My experiences with Chronic Fatigue Immune Dysfunction Syndrome

Vote for The Whittemore Peterson Institue

2011-06-14T14:37:00.000-07:00

Vivint is giving away $1.25 million to a charity and facebook users vote for the charity they think should win. Through facebook you can vote and I would recommend voting for the Whittemore Peterson Institute. They were the scientist who discovered XMRV in CFS patients and are very committed to doing research for CFS. Click on the link below and you will get directions on how to vote for this charity.

Description: The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability. Our goals include: * Facilitate and Advance patient care * Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism * Develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases * Advance and support medical education and physician training

How to find Joy in the midst of a storm

2011-05-07T12:23:00.000-07:00

Unfortunately Savella did not work out. I had bad anxiety, which is one of the side effects. I have anxiety as it is from dealing with my frustrations of not feeling well. My husband graduated with his Bachelors degree last week. The graduation started at eight in the morning and went until twelve and we were going to have a luncheon afterward. Did I mention his grandma loves to take tons of pictures whenever there is a family event? I knew there was no way I could make it that early and stay all four hours without being in exhausted for days. I got so anxious thinking about the judgment I could possibly get from his family for not being there the whole time. My sister decided to come with me for support and we went to the last part. Luckily it was freezing outside and we didn't take too many pictures. My husband decided we should come home and rest before we went out again for lunch. My mother came to the lunch too, which gave me courage to know I had double support, just in case an in law said something hurtful to me. I really think someone was watching out for me, because everything worked out. I am also very blessed to have a husband who knows that I still love and support him even though I can't sit through a four hour graduation!

I am learning that a lot of joy is being robbed from me because of the constant health issues I have and I need to put more happiness and joy into my life. We all need to do this because lets face it, life is hard and we are all going to go through difficult, cruddy experiences. I asked myself these questions the other day and I continue to ponder on them. 1. What can I learn from this? What does God want me to learn? Until my day of healing arrives how can I get through this? 2.What brings happiness into my life that can help me get through each day? 3.How can I help others who endure similar challenges? Question 3 I think no matter what our trials are we can gain strength from each other. Hard is Hard I don't think it matters if you are chronically ill or lost a loved one, going through a divorce, we can all draw strength from one another.

I had a really hard week that was just drab and depressing. The next week was my birthday and my family had a dinner for me, my husband took me out one day, and we went to the movies. Life was such much easier that week and I think it was because I had exciting events to look forward to where I could escape from my problems. So what I got from this is I need to plan activities to look forward to. We went to the BYU Carl Bloch exhibit this week. The wait was long so I ended up getting a wheel chair. The pictures of Christ were so inspiring. I loved one in particular of Christ in the Garden of Gethsemane. A beautiful angel has come down to comfort the Savior and she embraces the suffering Christ. I like to think that God sends us all angels to comfort us in our times of despair. The painting also reminded me that Jesus suffered for the sins and sorrows of all of us and he is there for me to turn to. He knows how I am feeling and what I am going through.

I find a lot of peace by writing in a gratitude journal. I try to think of 5-10 things I am grateful for. I'm going to break the rules and share some top secret journal entries with you. Here's an example+ of what I wrote in my journal on April 26th.

1. I am grateful I had the energy to teach piano to a delightful student who practices and wants to learn!

2. I am grateful for my new hair cut. It's shorter and so easy to style and look cute.

3. I'm grateful for the opportunity to sing Cecil Gates Easter cantata on Sunday. I spent my energy carefully each Sunday so I could make it to the practices.

4. I'm grateful for the darling slide show my mom made for my birthday and put online. She is so thoughtful

5. My dad took us to Olive Garden tonight and the food was delicious

6. I am so thankful for my sweet husband

I must close by adding that I read an interview with the author of SeaBiscuit, Laura Hillenbrand. She has had CFS for a long time and decided to talk about it in an interview with The New York Times. Her first onset was when she was 19, so you can see how I was very drawn to her story. I was so happy she spoke publicly about the reality of this illness. Her story gives me hope and courage!

Katie Couric Segment on CFS Study

2011-03-15T10:21:00.000-07:00

This new study on spinal fluid hope for a cure! I'm also about to start a new drug called Savella for Fibromyalgia pain.

A few weeks ago, Katie Couric did a segment on CFS on her show (wacth here). A study was done on spinal fluid of CFS patients in which they found protein abnormalities in the central nervous system. So What does this mean for CFS patients? This could eventually lead to be a diagnostic test which would allow researches to find the cause of this illness and be able to create drugs to help CFS and hopefully find a cure. More about the study here

I am going to start a new drug for Fibromyalgia pain called Savella. I was on Lyrica and it helped my neuropathy and fibromyalgia pain, but I gained 20 pounds over the last few months and the weight kept pounding on each week. I am just glad I was able to fit into my wedding dress! I am currently on Cymbalta for fibromyalgia pain, but I have not noticed a huge difference. I will be stopping Cymbalta since it is similar to Savella. If anyone has tried Savella I would love to know how it is working out.

Savella is not used to treat depression but how it works is similar to an antidepressant. Savella increases norepinephrine and serotonin activity in the brain. Savella has been shown to have more effect on norepinephrine activity. This is important for fibromyalgia patients because low brain norepinephrine levels are thought to be related to increased pain and cognitive difficulties (Many Fibro patients call this "brain fog").

So if you are like me you may be wondering what the heck is norephinepphrine? Released naturally in both the central nervous system and in the sympathetic nerves, norepinephrine acts as a neurotransmitter in the brain and is responsible for regulating nerve impulses. When the body produces the correct amount of norepinephrine, a patient's blood pressure stabilizes. When the amount of this hormone is too low in a patient's system, he may experience depression, poor circulation and is at increased risk of a heart attack. Read more: What Is Norepinephrine? | eHow.com http://www.ehow.com/about_4617154_norepinephrine_.html#ixzz1GgnAozEa

Cross my fingers that Savella can improve my pain levels. Happy Saint Patrick's day everyone.

Getting Married Without Crashing

2011-02-01T16:48:00.000-08:00

I have not blogged in a long time due to getting engaged and planning a wedding. Being a bridesmaid twice I had witnessed the stress and exhaustion a wedding brings. I was on a mission to make my wedding OVER FATIGUED PROOF. I want to share how I was able to handle such a big event without having a long lasting crash.

The first smart step in my mission was finding a photographer who was willing to work with me. We did 4 different photo sessions. In October, a month and a half before the wedding, I did bridals and photos with my husband. Then a about two weeks later we did photos with our families. All that was left for the photographer was to come to the reception and snap photos of all the traditions that go on there and to do a few shots outside the temple on our wedding day. I must add another bonus to doing photos early was that the autumn colors were at their prime and our photos were a lot more beautiful than they ever would have been in November.

We did things a little backwards and had our wedding reception the night before our ceremony. This way we didn't have to cram everything into one day. The day of the reception I made sure I had a lot of help getting ready. I even had time to go and get a relaxing pedicure and manicure.

We had our reception in my parent's home which made me feel so comfortable and there was a nice cozy feeling to the atmosphere. We had guests come from six to eight so we were not up terribly late. My husband and I sat in tall chairs with padding, so we didn't have stand as we talk to our guests. When the reception was over I just straighht downstairs took off my humongous dress and relaxed.

I made sure our wedding ceremony was in the afternoon so there was plenty of time for me to sleep in and get ready. (I am not a morning person; It seems like it takes me a couple of hours just to feel half descent A doctor told me its probably because my medications need to kick in and my body needs to un-kink the muscles from sleeping in one position all night- anyone else with cfs/fm like this?)

I didn't make a big deal about a formal luncheon. My parents invited close family and friends over for left overs. My husband and I ate and then we took off on our honeymoon.

Originally we thought of going on a cruise or to Mexico for the honeymoon. After thinking about it planning a trip like that is a whole different event to plan on top of a wedding. Time changes and traveling affect me and i would already be pretty worn out from the wedding. We decided to keep it simple. We stayed two nights in Salt Lake City. Warren's grandparents were very kind and let us stay in their condo in Park City, which is only a forty minute drive, so we went there. The next day after the wedding I literally slept all day and poor Warren was stuck watching t.v. the whole time. After a week and a half of rest i was able to get into the swing of things and teach my piano students.

Warren and I have been married for 2 1/2 months. I am so blessed to have found a man who is willing to marry me despite my health problems. Being newly married is always an adjustment and it has been health wise too. All of the sudden I have a 6'5 man sleeping in a queen sized bed with me and he snores. I don't think I got a good nights rest for the first two weeks. Good thing I love this guy to pieces! Now having dinner and a clean house fall on me. My husband works full time and goes to school full time. He knows how I'm feeling by the state of the house! He has been wonderful by helping do dishes (which we have to do by hand) and even will make dinner on those days that I have no energy whatsoever. My sister, brothers, and mom will even come over and clean. I have a great husband and family.

I found this article about Pacing for special events. It has some great advice

CFIDS Fundraiser

2010-04-20T18:02:00.000-07:00

I wanted let people know about an exciting fundraiser for CFS. Its called 24 hours in the Enchanted Forest. It's a bike race in the New Mexico Zuni Mountains June 19Th. It's $25 to enter and the money goes towards research through the CFDIS Association. This is their first year doing this. My family and I are going to be there and make a vacation out of it. I am really excited about this and I will be sure to write about the experience.

I am currently taking a online self help course for CFIDS through cfidsselfhelp.org It's a six week course that teaches practical skills for managing CFDIS and FM. It's great because while doing the course you are put in a discussion group of other people taking the course and we email back and forth. Each week I have an assigned chapter to read from the book Patients Guide to Chronic Fatigue Syndrome and Fibromyalgia. I then have to make a goal that relates to the chapter and report how I am doing on this goal to my email group. Last week the chapter was on Exercising without overexerting oneself. I made a goal to go on a short walk three times in the week (I've been in a lot of pain and so I have not been able to walk very far). I highly recommend this class. I wish I would have read the book years ago!

Discussion on XMR Virus by Dr. Lucinda Bateman

2010-01-04T12:26:00.000-08:00

The Offer Meeting Dec. 2, 2009 has now been posted on the Offer website.If you want more in depth knowledge on this mysterious virus listen to this. I know I've said this before, but this finding is huge in the CFS community. I think it would be fare to say this is the most substantial finding scientist have ever found. This virus has gotten a lot of publicity therefore giving more legitimacy to the illness. So I've been listening to this today while I do stuff around the house. It is long. I pray that these scientific findings lead us to a cure! Happy New Year

OFFER-UTAH November 4th meeting & Dr. Oz XMRVIrus

2009-12-11T12:28:00.000-08:00

Last week on the Dr. Oz Show there was a special on CFS and the XMRVirus. This XMRVirus has really shed the light on the legitimacy of CFS as a real illness.

In Novemeber my mom and I were asked to speak at the OFFER-UTAH meeting. We were on a panel of CFS patients with their caretakers. Just a viewer warning, some of the stories of the patients are really heartbreaking. Some of the questions were very difficult to answer. I was really emotional and sad for a couple of days after speaking on the panel. But it is very informative and up close and personal look into the life's of those with CFS.

The flu keeps going around my family and that has set me back. I've also been dealing with painful migraine headaches that are so annoying. But despite these set backs I still have been able to plug away at school and next week I have my finals. Christmas always puts me in a good mood because I love the beautiful, inspiring, music and that makes getting the flu not so bad! Merry Christmas to you all and A Happy New Year.

Top Ten Things for Family and Friends to Understand about CFIDS

2009-09-03T14:11:00.000-07:00

The CIFIDS association sent an email encouraging patients to share this list. 1,084 people took a survey and the association came up with top 10 list of things they wanted their family and friends to understand.

1. CFS is real.
“I’m not making this up.”
“My symptoms are very real even though you can’t see them.”
“I am sick with a real disease and I’m doing the best I can.”

2. It is very debilitating and disabling.
“CFS is as disabling as HIV, cancer and MS.”
“Staying at home is not a ‘fun vacation from reality.’”
“CFS is absolutely life-altering.”

3. The fatigue is very intense.
“It’s more than being tired.”
“My energy is very limited.”
“I understand you’re tired, but it’s not the same as CFS.”

4. Looks can be deceiving.
“I don’t look as bad as I feel inside.”
“Even when I look good, I feel awful.”
“Just because I look okay now, know that I’ll pay for it later.”

5. CFS is unpredictable.
“I don’t know from one day to the next how I’ll feel.”
“I have no control over how I feel.”
“I need to be flexible in planning things.”

6. It has nothing to do with being lazy.
“I wish I could accomplish more each day than I can.”
“Even simple things are often beyond my ability.”
“I’m not trying to get out of doing something when I say I can’t.”

7. Words don’t do CFS justice.
“There’s no way to accurately describe how bad I feel.”
“I still hurt as badly 20 years later as I did the first day I got sick.”
“Even when I don’t talk about it, I still feel sick.”

8. CFS is very isolating.
“I am often lonely and alone.”
“Life moves on without me.”
“Nobody understands what I’m going through.”

9. Your understanding is important.
“I am so grateful for my family’s support.”
“I am very lucky to have their understanding. It makes life bearable.”
“I still need quality life experiences and to be involved.”

10. CFS is not a choice.
“I don’t want to be this sick.”
“I miss the person I used to be.”
“It’s so sad to miss out on so many things in life.”

CFS/FM Awareness Month and Update on Moi

2009-05-19T15:52:00.000-07:00

I thought I would mention to anyone reading this that it is Chronic Fatigue and Fibromyalgia Awareness Month. There are several people around the country with this illness who go to Washington D.C during the month of May and talk to Congress and lobbyist about these illnesses. I would have loved to be a part of this experience, but I decided to take some classes this summer term.

There is currently a contest put on by ME-CFScommunity.com The site is encouraging care takers, loved ones, or patients to share there stories about the illness. You can either write your story or do it through a video. There is a cash reward for the winners.. Go here for more details

I know that when I was on Valcyte I was always so curious about how others were doing after they took the drug, so I thought I would update my health status. I am still experiencing great energy and stamina. Like I noted, I am taking an Ear training and Dictation Music Class right now. The class is going very well. I am still teaching as well, and getting my students ready to put on a recital. Let me say that around the time of last year's recital, I was in the emergency room the night before and was very loopy from the pain killers, and dealing with terrible anxiety. I am so happy to be normal, to feel normal. I think that if I would have stayed on Valcyte any longer I would have checked myself into the mental institution. Of course I am half kidding but here were those days I felt like I was going bonkers from all the herxing and side effects!

I am really improving and hope to keep doing better. I go on substantial walks with my dog. I've consistently attended all 3 hours of church for a few months now. After my class is done in July I am going to be planning a summer music camp for my students. I'm really excited about this. I've been wanting to to do this for a long time and I finally have the stamina and energy to do it!

I am still being careful not to over do it so I don't relapse. I make sure to park near the building where my class is so I don't have to walk really far. I have a brother who attends the same university so I am able to ride with him some days, which is very nice if I am a little tired. I still make sure to go to bed early. I find I do best if I have 10 hours of sleep. That way I don't have to take naps in the afternoon. I still take breaks and rests.

3 weeks ago I did the bicycle test at the University of Utah. They can measure one's level of fatigue and pain through their blood. It is so cool. I know they need more men on the study who have CFS, so if you are a male and interested let me know and I can give you the information. The lady who directed the study has a husband who is studying the same markers in mice. He is actually giants leaps ahead of the game and creating drugs that help with fatigue. He originally found the expressions for fatigue in blood work through his study in mice. It was very fascinating to talk to the scientists. I should be getting my results from the test in sometime in June. I am very curious to see how I did. I did have a little soreness but I was not set back by the 25 minute bike ride.

I want to thank all my friends, online friends, and family for the supportive comments, phone calls, and emails I've received. Thank you for your love and encouragement as I continue to improve.

Positive Signs

2009-03-30T07:05:00.000-07:00

I have been doing so much better since my last post in January. I started Provigal, which is a medication for narcolepsy and helps one to be alert and have energy. I believe it helps me get through a long day. When I study I feel more focused and don't have that tired brain fog feeling.

I've been reading and listening to a lot of books on positive thinking and how to get what you want out of life. The theory is what you think or send out to universe will come back to you. You have to not doubt and think positively and believe that you will receive what you ask for. Each day I write down what I want to create for that day. I write down that I want to be healed and everyday things like, I want to study chapters 5 and 6 for my Biology test. I'm finding that this really helps and I'm not doubting anymore and truly believing that I can have good health and live a full life.

I am a very religious person and I have a strong testimony of the atonement of Christ. I know that he suffered for our sins and struggles and knows what we are going through. I believe that there is tremendous power in believing on his name I know he can heal us, just as he healed the blind, the leapers, and the lady with the issue of blood. Having faith in Jesus Christ has helped me in my healing process.

I went hiking two weeks ago and I didn't crash the next day or the day after. That was amazing. I went roller skating this week and did fine the next day. At the end of each day I feel like I am accomplishing a lot. I finally feel like my old self. I want to be around people and go out. My doctor encouraged me to be more social since my job, piano teaching, keeps me at home. So I am taking her advice. I still pace myself and stop if I know I'm doing too much. I think a lot of the secret is planning ahead. For example; coming Friday evening I know I'm going to be spending at least 4 hours adjudicating piano students so I'm not going to go out all day. The last thing I want to do is relapse so I'm still being careful.

The University of Utah has asked me to be in a study to find a potential Bio Marker for CFS. I have to go and get my blood taken and then ride a bicycle for 25 minutes. I believe they take my blood right after I'm done, then take it again at 24 hours and then 48 hours. The theory is that CFS patients experience post external malaise, especially after exercise. Apparently there are ways to measure this affect in the blood. This could be a potential diagnostic test for CFS, which would be wonderful since there is no kind of actual test as of now to prove if one has this illness. Doctors would then take the illness more seriously which would raise public awareness. A ripple effect. So I am really excited about this experiment!

Trying to find answers for my fatigue

2009-01-27T22:28:00.000-08:00

As I said In my post last week I've been very tired all month. Today I pretty much slept all day and I didn't know if I was going to make it teaching piano. The good news is I have enough energy tonight to research and write this post and I found an exciting article on cfids.org about their biggest research projects ever and the plans to carry them through this year- see article below after my comments :)

Yesterday I found out my viral titers have not changed at all since last spring. I got really discouraged, especially since I've been so tired. But I can't let myself get down and depressed. I've been down that road and it's not a good place to be. I refuse. Pro activity is the key. So I've been researching and talking to people on immune support to get support and some ideas on how to get out of this tired spell.

Dr. Montoya uses Focus labs to test for the HHV-6 antibodies. Some people say that this is the most accurate testing to use for HHVV-6. My doctor just orders them through our hospital and I think they get sent up to the UofU. So maybe the focus labs would show more improvement. I don't know? All I know is that I defiantly was a responder to the valcyte since I herxed.

I have an Internet friend who went on valcyte and then valtrex and then got treated for some other underlying bacterias. She is doing great and has no fatigue. Actually a majority of the people on valcyte I know via Internet where treating other issues too. It seems like Lyme disease was very common thing they got treated for.

My dad is convinced I have Lyme disease. My symptoms first started when I came home early from girls camp up in Lake Tahoe area because I wasn't feeling well. Right around that time I had some very stressful emotional trauma happen, which I don't think any 15 year old would really know how to handle. My tiredness escalated from there.

I've been trying to figure out other reasons I've been tired. I've been having stomach issues. For example, today I ate 2 small pieces of pizza and a banana and I felt like my stomach was going to pop! I felt so sick to my stomach for the rest of the day and could not eat. I can only eat very small amounts of food. Maybe I am not digesting and absorbing my food properly and that is effecting my energy. 4 years ago I had my stomach scoped for H pylori. I wasn't supposed to eat for twelve hours and I made sure I didn't. When they scoped me all my food was sitting there in my stomach and hadn't been digested. The problem sort of went away. I need to address this again and go see my gastroenterologist.

My other thought has to do with Seasonal Affective Disorder (SAD). People with Auto Immune Disorders are very likely to have SAD. It is winter and I live in Utah. Not seeing a lot of sun. Even if you do go out it the sun you have to stay out for hours in the winter time since the earth is farther away from the sun to get the amount of vitamin D you need. That is hard to do, especially if you are tired all the time! I tend to be on the lower end of normal with vitamin d as it is. I have to take Vitamin D supplements. But from research I've done they best way to get vitamin D is from UV rays and not supplements. I have not been tested for a while, so maybe my vitamin D levels are low? A friend of mine with fibromyalgia she suffers from SAD and she did a lot of research on it and has started going to the tanning bed with UV VB rays which are suppose to imitate the sun. She only goes 1 or 2 times a week for 3 minutes and says it has helped her. I'm not big on tanning beds due to skin cancer. If I only went for a few minutes once a week maybe I'd be okay?

My next doctor's appointment is with Dr. Bateman at the end of February. I'll try some things at home, and maybe she will have some ideas too. This is a mysterious illness and maybe my tiredness will go away on it's own. I am really ready to have more of a life. Go back to school, even if I just go part time. I will be sure to report how I'm doing and if I find something that helps me.

FOR IMMEDIATE RELEASE
DECEMBER 3 THE CFIDS ASSOCIATION OF AMERICA, INC. www.cfids.org
Largest-Ever Chronic Fatigue Syndrome Research Initiative
Announced by CFIDS Association of America
CHARLOTTE, North Carolina—December 3, 2008. The four million Americans who suffer from chronic fatigue syndrome (CFS) have new reason for hope today with the announcement of an unprecedented research program to help identify biomarkers to improve diagnosis and treatment of CFS. The announcement was made by the CFIDS Association of America, which is funding the program, called the Accelerate CFS Research Initiative.
The initiative was made possible by the successful completion of a yearlong, million-dollar fundraising campaign, the largest research campaign for CFS to date in the United States. The CFIDS Association has funded more than $5.4 million in research since 1987, making it second only to the federal government in CFS research spending.
“The campaign is enabling us to develop a revitalized research program for CFS,” said Kimberly McCleary, president and CEO of the CFIDS Association. “Today, the Accelerate CFS Research Initiative has already resulted in research grants totaling $647,940 to six research teams in the U.S. and Canada. This will lead to an international network of scientists who routinely collaborate and communicate to accelerate the pace of CFS research.”
The grants were awarded following a rigorous process that included a review of proposals by 44 independent experts for scientific merit and by CFIDS Association board members for strategic merit. “We were very impressed with the number and caliber of grant proposals we received this year, which signals a heightened level of interest in CFS research,” said Suzanne Vernon, PhD, the CFIDS Association’s scientific director. “And most of the grant recipients, while experts in their respective fields, are new to CFS research. It’s critical to attract new investigators to CFS research in order to propel the field forward.”
The grant recipients are:
• Gordon Broderick, PhD, associate professor in the Department of Medicine at the University of Alberta in Canada. Broderick, a chemical engineer and leader in bioinformatics, will lead a cross-disciplinary team from four institutions to study adolescent patients who became ill with CFS after contracting infectious mononucleosis, which is caused by the Epstein-Barr virus. By studying the immune and endocrine response in patients from the time they get infectious mononucleosis to the development of CFS and through the first 24 months of illness, the researchers hope to identify biomarkers for early disease and for disease progression. These markers are essential for early detection and diagnosis, and may point to novel treatment courses.
• Kathleen Light, PhD, a research professor at the University of Utah Health Sciences Center. Light and her team will try to uncover the mechanisms involved in the chronic pain that afflicts 40%-70% of CFS patients. This study will confirm or negate preliminary evidence Light gathered during an NIH-funded study demonstrating that
receptors located on blood cells are increased and overactive in people with CFS, causing increased pain sensitivity. Light theorizes that increases in specific receptors following exercise may be blood-based biomarkers for CFS and could lead to a medical test to identify CFS patients. The study will also examine a combination of blood receptors to help identify subtypes of CFS and guide treatment of specific patient subgroups.
• Marvin Medow, PhD, associate director of the Research Division of the Department of Pediatrics at New York Medical College. Medow and his colleagues will investigate whether increased pooling of blood in the abdomen of CFS patients results in reduced cerebral blood flow. Medow will examine physiologic and oxidative stress changes associated with disturbance in blood flow. These results will help determine if alterations in blood flow affect brain metabolism.
• Bhubaneswar Mishra, PhD, a computational biology expert and professor at the Courant Institute of Mathematical Sciences at NYU. Mishra will use state-of-the-art bioinformatics and computational biology tools to create an agnostic computational model of CFS—a kind of “Google for CFS” that will be part database, part knowledge-base, part research network. This new resource will provide a “systems view” of CFS that accumulates published CFS literature and experimental data to disentangle complex relationships among reported findings and discover causes of CFS.
• Sanjay Shukla, PhD, a microbiologist and research scientist at Marshfield Clinic Research Foundation. Shukla and his team are using metagenomics to determine if the ratio of good to bad intestinal bacteria in CFS patients is altered, and whether this imbalance in gut bacteria may be responsible for triggering CFS symptoms. Recent advances in metagenomics have demonstrated the significance of altered gastrointestinal bacteria in illnesses like HIV, diabetes, Crohn’s disease, inflammatory bowel disease and ulcerative colitis. Shukla theorizes that CFS patients also have an imbalance of good and bad intestinal bacteria, resulting in enhanced intestinal permeability—called leaky gut—allowing bacteria to move across the protective intestinal barrier and causing chronic inflammation and immune activation in CFS patients. The study will rigorously examine these issues and investigate whether exercise may worsen this bacterial translocation, helping contribute to postexertional malaise in CFS. This study will contribute to our understanding of the relationship between the human microbiome and CFS. It may also produce evidence for new treatments, including the use of probiotics.
• Dikoma Shungu, PhD, a physics professor and research scientist at Weill Medical College of Cornell University. Using a brain scanning technique called magnetic resonance spectroscopy, which not only provides a picture of the brain but also detects and measures various brain chemicals, Shungu and his team will build on a preliminary study showing that brain fluid of CFS patients contains significantly elevated levels of lactic acid, or lactate, a substance important in metabolism. (Results from this preliminary study, also funded by the CFIDS Association, were published in October 2008 in the journal NMR in Biomedicine.) The investigators will also determine whether lactate levels are higher in CFS patients because their brains contain high levels of toxic compounds that cause a condition called oxidative stress, which could implicate chronic inflammation, or because mitochondrial dysfunction is causing their brain energy production to malfunction. If this study is successful, brain lactate levels could provide an objective diagnostic biomarker for CFS and evidence of a metabolic problem in these patients.
The research studies being funded this year are interconnected in many ways. “Not only will several of the investigators collaborate directly, all of them will be sharing their data with each other and with other scientists,” Vernon said. “This is essential if we are to make rapid progress in unraveling the complexities of a multisystem illness like CFS and in providing medical professionals with better diagnostic and treatment tools to improve patients’ lives.”
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Copyright 2008, the CFIDS Association of America, Inc.

Started Valtrex

2009-01-20T14:55:00.000-08:00

I started valtrex almost 3 weeks ago. Dr. Montoya puts his patients on valtrex because his theory is that if there is any viruses left over in your body the valtrex will stop them from replicating, therefore preventing relapse.

Valtrex is a milder anti-viral than valcyte and from the people I've talked to who are on it it appears that the side affects are nothing compared to valcyte. Thank goodness! The only side effect I've noticed is headaches. Valtrex is traditionally used against most species in the herpes virus family. It works against aliments like Cold soars, shingles, and genital herpes. Valtrex has recently been shown to lower or eliminate the presence of the Epstein-Barr virus in subjects afflicted with acute mononucleosis, leading to a significant decrease in the severity of symptoms (Simon et al. (March 2003) The Effect of Valacyclovir and Prednisolone in Reducing Symptoms of EBV Illness In Children: A Double-Blind, Placebo-Controlled Study. International Pediatrics. Vol. 18, No. 3. pp. 164-169.)

I am involved in a study done by Reflections Studies. They are interested in seeing what medications help in the treatment of CFS and Fibromyalgia. I get interviewed several times a year. They ask questions on how I'm doing in the 4 mains areas: sleep, energy/stamina, pain, and mood. I also get paid to do the surveys, $25 dollars a phone call. I was signed up to do the survey through my Doctors research clinic.

I'm still doing acupuncture. I'm still teaching piano lessons and working on my biology online class. My goal is to try and work on the class everyday because it can be easy to not do it do to not feeling well. I've been fatigued for the last 2 or 3 weeks. I think it is from all the excitement and activities going on during the holidays. I am starting to get back to were I was though. I'm looking forward to June my Two Year Marker since starting valcyte to see how I've improved.

Here is a good article on investing your energy. I know I could be better at this. As a single person in my 20s it is hard for me on good days not to stay out late with friends, plus so many of the activities are later. It really throws off my sleeping schedule since I require a lot of sleep!

Promoting Recovery: The Fifty Percent Solution
by William Collinge, PhD
January 11, 2009

Author of Recovering from Chronic Fatigue Syndrome: A guide to Self-Empowerment, and Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness, released in December 2008.*

The experts agree that lifestyle change is the foundation for recovery from CFS. According to Paul Cheney, MD, this is "easily the most important and often the least emphasized" part of treatment.

CFS is a cyclical disease. One important aspect of lifestyle change is how you manage your cycles. You can be "doing everything right," and you'll still have cycles, often for no apparent reason. You can, however, learn to reduce their severity, and even use them to your advantage. Here's how.

On the "Good Days"

Waking up to one of those precious "good days" is like finding an unexpected $100 in your pocket. What do you do with this extra money? The temptation might be to go out and spend it all. You may want to "make up for lost time" and do everything you've been deprived of: go shopping, go for a long walk, do the laundry, clean the windows, go to a movie, wash the car, shampoo the carpet, and finish those three or four other projects... knowing that this is a rare opportunity to "get a lot done." And then, of course, you crash.

There is an alternative way to work your cycles. You can actually use the good day to help build momentum toward healing. Think of the good day as a form of "capital" that can be invested in your healing process–rather than being spent or squandered.

I call this "the fifty percent solution," and it goes as follows: When you awaken to a good day, make an assessment of how much you feel you can do. For example, you might make a list often things you feel capable of doing and want to do today.

Now, instead of spending all your newfound capital, you would do half the things on your list, and then stop. For the next day or two, you observe your body's responses.

If you crash, your assessment is adjusted downward on your next good day. If you feel fine, you may want to repeat this process, each time doing just half of what you feel capable of doing. As your confidence grows, your appraisal of how much you can do may increase, but you still do just half.

"The essence of the fifty percent solution is that you spend half your energy and invest the other half."

What to do with the other half of your energy? This is the key. It takes some self discipline, but here is where you have a chance to do something clever.

The essence of the fifty percent solution is that you spend half your energy and invest the other half. What is not spent outwardly is used inwardly to support your body's self-repair mechanisms. Thus, even though you don't feel you need to, you take extra time to rest.

The rest that you get on a good day is of a higher quality than that on a bad day.

By gaining extra "unneeded" rest on a good day, you are investing in a savings program that collects interest.

Your body's self-repair mechanisms are what will eventually lead to your recovery. By giving them the benefit of this extra good quality rest, you build momentum toward a higher baseline of functioning.

As you move further toward recovery, your assessment of your available energy will gradually rise. By managing your energy conservatively on your good days, eventually your periods of remission can lengthen, and the severity of your relapses can gradually diminish.

Let your wealth grow. Don't spend every penny you find in your pocket. The fifty percent solution has served as a useful guideline for many former PWC's in promoting recovery.

___

William Collinge, PhD, is a consultant, author, speaker and researcher in the field of integrative health care. He has served as a scientific review panelist for the National Institutes of Health in Mind/body medicine and complementary therapies.

* This article is excerpted from the book Recovering From Chronic Fatigue Syndrome: A Guide to Self-Empowerment. The chapters of this book and other helpful articles are available for download free of charge from Dr. Collinge's website www.healthy.net/collinge/writings.html Note also that Dr. Collinge will soon be launching Phase II of his Fibromyalgia Wellness Project - an NIH-funded study to develop helpful web-based self-help programs for people with FM.

I got to talk to The CFSAC

2008-11-06T11:14:00.000-08:00

Gradually I have seen improvement. I have not been able to do much on Halloween for the past three years because of my health. Last year I got all dressed up and went with my friend to go to a party and fell asleep in the car. Last Thursday,the day before Halloween, I had my piano students,ages 6-10, come over and we played music games and they performed. It was a lot of work keeping entertaining and keeping them on task but somehow I managed to do it. I was glad to not have a huge payback the next day and I was able to go out on Halloween.

I have started taking a Biology course online. I have a year to complete it so that works out perfectly with my situation. I'm hoping this coarse will help me get a better understanding of CFS as there are a lot of theories that the illness has something to do with things like abnormal cells and mitochondria dysfunction.

I would still like to get more stamina and function. When I get a bit more energy I'd like to start up a business. I make signs/plaques out of old music paper I have that dates back to the 19th century and then I stencil on music quotes. I have been able to sell some already. We will see what happens.

Last week on Tuesday and Wednesday the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC)met for 2days in Washington DC with the Assistant Secretary of Health.

CFIDS.org states that "CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of
programs to inform the public, health care professionals, and the biomedical, academic, and research communities about chronic fatigue syndrome advances."

The committee set a side time for public comments. They encouraged patients to give 5 minute comments on CFS regarding research, quality of life, and provider education.

I was not able to make it to Washington DC so instead I read a statement over the phone to the committee. Here is what I read to them:

I noticed that I was developing chronic fatigue in the Fall of 2000. I was 15, loving life, and excited about being in high school. Unfortunately, I was extremely tired, sometimes sleeping up to 20 hours a day. Along with the fatigue I had tender lymph nodes, a sore throat, body aches, and daily headaches. I ended up missing two months of school due to this condition. I gradually was able to go back to school, but with a lot of adjustments. My doctor had no idea what was wrong with me. Eventually we moved and found my current Dr., who is a chronic fatigue specialist. Over the last six years I've had my ups and downs with this illness. There was a two year period when it seemed the fatigue was going into remission and I was able to attend college. I thought I was done with my hypersomnia days. In 2004 my aunt, whom I was extremely close to passed away from kidney failure. The chronic fatigue came back accompanied by fibromyalgia pain.. I had mornings were I had to have help getting out of bed because I was in so much pain. I didn't know what was going on; I was a nineteen year old with the body of a 90 year old. I had to go home in the middle of the semester because I was so sick. I have not gotten my energy back to what it was since 2004.

I am very hesitant to tell people I have I have Chronic Fatigue Syndrome. I choose instead to tell them I have Virus Induced Central Nervous System Dysfunction. I get a completely different response than I do when I say I have CFS. There is negative connotation with CFS phrase. People don’t take you seriously. What if instead of Diabetes we called it “Chronic Urination Syndrome”. That would be insulting to people who have the illness. Chronic Fatigue Syndrome is a lot more complicated than just fatigue. In my case I have not only with post external mylasis, but digestive problems, muscle pain and aches, issues with my heart such as Orthostatic Intolerance, cognitive impairment, and the typical symptoms of CFS : sore throat, tender lymph nodes, and headaches. All of these symptoms are very common among CFS patients.

. My experiences with this illness have taught me a lot. I have had many friends and family members who “get it” and understand the struggles I have had. They are supportive. Unfortunately there have been some who don’t get and have said very ignorant and hurtful remarks. Some people don’t even realize what they are saying is hurtful and I have concluded that a lot of this has to do with the lack of knowledge, awareness, and education there is on this illness. So I plead with you to help the CFS community get the word out!

Doctor Lucinda Bateman recently stated in a CFS conference that “There are 2,400 people in the US with breast cancer. The NIH spent $690 million on Breast cancer research. The Susan G. Komen Foundation lists contributions of $242 million, with end of year cash: $184 million.

Muscular Dystrophy is classified as a "rare disease" affecting less than 200,000 of USA population. In September the Jerry Lewis telethon raised $65 million for the Muscular Dystrophy Association, 1.2 million more than last year.

According to CFIDS.org 1 million Americans are affected by CFS. Federal funding through NIH for CFS was $3-7 million/year. CDC (intramural research teams) $5 million/yr which was down from $9 million in 2005.

Bottom line? We need more research! As you can see this illness is real and affects so many people and is not a rare disease. We need more research and money to find a cure. This effort will give sufferers such as myself hope. I thank you for your time.

Update on My Health and Summary of CFS Conference

2008-10-09T22:39:00.000-07:00

Hope by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

I was so glad to have such good energy for about a good 3 weeks in August going in to September. I can't even recall the last time I had such consistency. I got really discouraged last week when I woke up with swollen glands, soar throat, and very lethargic. I am glad to say though that this is a one time occurrence since being off valcyte the past three months. Thankfully this only lasted two days. My acupuncturist helped me out, suggested some herbs and gave me “emergency” treatments. I would say now that I have a lot of so-so days combined with good days as opposed to mainly bad days when I was on valcyte.

I'll confess I'm impatient and have even been, I hate to say, discouraged. It has been such a long year and three months, plus pre-valcyte I was not doing well. This past weekend I was not doing well and in a funk and just tired of it all. Sick and Tired of being Tired I call it! My mom got on immune support and read an account of a gentleman who was on valcyte for 7 months. He said six months after being off valcyte would not be a fair place to judge how it had helped him. A year has passed now since he stopped valcyte and he his biking 8 miles a week! He said he has improved 80-90%. Another person on valcyte said although she had cognitively improved 100% at 6 months post-valcyte, and said it would not be a fair place to judged if the drug had helped her over all at a 6th month post valcyte marker. She had seen improvement in energy too. I was so glad to hear this. I needed that hope to hold on to. As I've thought about these two patients I realized how greatly my cognitive function has improved. I've read 3 novels in the past month. I can sit down at the piano and read difficult music. On good days I can play and sing for 45 minutes. In December I tried to read accounts of Christ's birth from Matthew and Luke, but I gave up because of the brain fog and fatigue I felt. Now I read from the Bible or Book of Mormon(another testament of Christ) several times a week. I constantly have to remind of myself of these things.

A quote from my doctor Lucinda Bateman from a recent article she published says it well "...The patients who do best over the long term are those who build their emotional resilience. They develop insight. They learn how to get out of an emotional slump or calm paralyzing fears. They learn to get back up and take one step forward." several excellent articles including the one I just used the quote from.

I have stopped telling people I have CFS. I tell them I have a virus attacking my central nervous system. Dr. Montoya calls it Virally Induced CNS dysfunction. They ask what exactly it is and I tell them it has caused complications with my heart (orthostatic intolerance and POTS) my stomach intestines, fatigue, and muscles, ect. Then they say "I've never heard of that before, wow!" Actually they have heard of the illness before; it's called Chronic Fatigue Syndrome but that is the most degrading name for this illness and there is negative cogitation associated with it so I refuse to tell them it is also called CFS. It would be like a diabetic saying "I have Chronic Urination Disease". The last thing I need at this point in my life is to have ignorant comments made, and I’ve had many made as does everyone else with CFS, and judgment so I refuse to tell them I have CFS. I just want support and respect and I'm not doing this for attention. I'm a musician and I've done lots of theater. If I wanted to be the center of attention I go be in a production of the Sound of Music. The other day I was at an young adult church activity and this girl asked me if I was going to school and I told her no and she immediately went on to the girl next to me and asked her if she was going to school and she was and they chatted up a storm. I just figure it's here loss if she doesn't want to get to know me and I'm still a person of worth. Worth isn't based on an achievement resume that you whip out every time you're in the social arena. And when I’m around people my age and they start complaining about how many tests they have and how they are stressed out about school and work, ect. I just want to grab their face in my hands and plead with them to be grateful for their healthy bodies and energy and highly functioning, clear brain they have and to do all these things. Of coarse I'm envious because I want to be able to do all those things and those are their concerns and mine are about how I'm going to make it through the next day and without agonizing so much about the future and what's going to happen to me. Will I ever get better and how long is it going to take? Is the valcyte going to work? I'm I ever going to be able to go to school again and do what I love? I'm I going to get worse over time? Will I ever talk to my best friend again and will she ever understand? I know anyone out these with a long term illness asks the same questions, feels the same way and I write these things to represent the CFS community. I'm working on how to cope with these situations, suggestions are welcome from my fellow CFS community friends.

One of my favorite people to be around actually has a rare disease called Wolframs. He has diabetes, is legally blind, and probably will die in his 30's because it's a degenerative disease. Somehow his maturity is impaired so he is child like. He is very smart and funny. We hang out a lot and he is so optimistic and confident, non-judgmental. When I with him I forget about my problems and I enjoy being his company.

I am thinking about going to Washington D.C. where the CFDIS Advisory Committee is meeting with the Department of Health and Human Services to advise them to get awareness out research, ect. CFS patients are urged to attend and give a 5 minute Public comment. This will be held at the end of the month and if I attend I will be sure to write about it.

I went to a great half day conference 3 weeks ago that was put on by my doctor's organization OFFER. There were 4 great speakers. Daneen Akers is the daughter of an FMS patient and she and her husband produced a documentary film called "Living With Fibromyalgia". I didn't get a chance to see the film and the DVDs were sold out, but I hear it is excellent. Dr. N. Lee Smith the director of the Lifetree Pain and research center gave a great talk on Fibromyalgia. His clinic offers a 6 week stress management course and most insurance companies will cover the whole cost.

Dr. Bateman talked about Updates in the Diagnosis and treatment of CFS. She mentioned Stanford Valcyte Trial. Results are still to be announced. The part that stuck out the most for me from Dr. Bateman's remarks was research funding. There are 2,400,000 people in the US with breast cancer. the NIH spent $690 million on Breast cancer research. The Susan G. Komen Foundation lists contributions of $242 million, with end of year cash: $184 million. Muscular Dystrophy is classified as a "rare disease" affecting less than 200,000 of USA population. In September the Jerry Lewis telethon raised $65 million for the Muscular Dystrophy Association, 1.2 million more than last year. According to CFIDS.org 1 million Americans are affected by CFS. Federal funding through NIH for CFS was $3-7 million/year. CDC(intramural research teams) $5 million/yr which was down from $9 million in 2005. The CFIDS Association of America set a goal to raise $1 million for direct research funding. They have been working so hard to do this and I just received an email this week informing that they had reached their goal. A lot of awareness has gotten out for Fibromyalgia because of two new drugs that have been approved for it Lyrica and Cymblata. Unfortunately not much for CFS has been done. More people are affected by CFS than Breast Cancer and Muscular Dystrophy. The money they have to do research is hardly anything. Research takes millions of dollars to fund. There are some people and politicians, who love to hate pharmaceutical companies because they take up so much money, but it costs so much to do studies for drugs. It has been hard for me going into stores and seeing M&M and even Salad packages with Breast Cancer Awareness written across. Not to demean cancer but people with CFS suffer just as much and need and deserve the funding and awareness. I would be awesome if we could organize a marathon to raise money and have a family member or fried sponsor the CFS patient and run for them. Any ideas on how to raise money?

There was a presentation that was so interesting and hopeful given by University of Utah researcher Kathleen Light about biomarkers that could be a new and better way to diagnose CFS/FMS. There were notes given along with the conference and I'm going to copy from them. Email me if there is a problem with me posting this.

New Hopeful Biomarkers in CHRONIC FATIGUES & FIBROMYALGIA SYNDROMES

Genes
Genes are likely to be involved in 2 ways.1. Genes (the kind you inherent from your parents) may give you a constitutional vulnerability but you may not know it for years. Then you may be exposed to some life event (infection, traumatic accident, major life stressor) that influences gene expression (turns on specific genes) and triggers onset of worsening of symptoms. 2. Challenges like exercise also influence gene expression, sometimes for better and sometimes for worse.

Sensory Pathways Involved in Muscle Pain and Fatigue (even in Healthy People) Are Still Not Understood
Pain from skin damage (cuts, poking or pinching the skin) has been studied a great deal and the nervous system pathways are fairly completely known.
Pain from working muscles that are obviously damaged is something we all have experienced, but the pathway involved are only recently beginning to be documented. Likewise, we have all experienced muscle fatigue, and like pain, this is a vital protective sensory experience, but there is even less known about the pathways involved.

Paradox in FMS and CFS
Gradual increases in whole body exercise is one of the most effective treatments to slowly reduce symptoms and normalize function, yet exercise even at moderate level causes worsening of pain and fatigue symptoms in these patients at 24 and 48 hours later, and sometimes much longer.

Legal and Scientific Considerations of Exercise Stress Test-- Margaret Cocolella, EdDJournal of Chronic Fatigue Syndrome 2007, 14:7-23
A standardized bicycle exercise protocol to at least 85% of predicted maximum heart rate was repeated twice 24 hours apart in 6 CFS patients and 6 normal controls. Expired gases were collected throughout the test so that the following values could be determined: Peak oxygen consumption, oxygen consumption at anaerobic thresholds, peak respiratory quotient, and percentage of age-predicted maximum heart rate.
Controls showed only 2-3% change in oxygen consumption from Test 1 to Test 2 while CFS patients declined by an average of 22-27%. Based upon the premise that test-retested variability should not exceed 8% this study indicated significant metabolic capability 24 hours after initial exercise test in CFS patients.
This is at the same time period when CFS and FMS patients report increases in muscle pain and fatigue even at rest or during simple movements.
We ask: can we find blood-based bio markers that are associated with this exaggerated delayed onset muscle pain and fatigue in CFS and FMS patients?

Why Look for Blood based Biomarkers?
Tender point exam requires hyper-sensitivity to pressure at 11 of 18 points to be diagnostic. Many patients experience chronic wide-spread pain without hyper-sensitivity, or have fewer tender points on some medical visits. Like all self reports, these can be based.
Blood based diagnostic measures are traditional in medical practice, and are considered objective, hard evidence.
Avoids legal concerns about subjectivity, malingering or biases from secondary gain 9insuarnce or disability).

Recent Research on sensory Pathways Shows How we Sense Muscle Fatigue and Pain
Alan Light and his research team (2008) recently reported a series of studies in animal models clarifying that at least 2 or more types of molecular ion channel receptors must be activated together to detect muscle fatigue and pain. They detect acid, especially lactic acid, and ATP produced by muscle activity(even low level activity) Can we determine if one or more of these ion channels receptors is functioning abnormally in CFS and FMS?

White blood cells also know as leukocytes
1.Are involved in immune and inflammatory responses.
2.Express receptors of many kinds, including ion channel receptors that appear to sense muscle pain and fatigue
3. Are carried throughout the body, having contact with all tissues including muscles and connective tissue, and all of the nervous system including the brain
4. When a series of blood samples are taken from the same person the numbers of ion channel receptors on leukocytes can increase or decrease dramatically.
We believe that very large increases in these receptors could lead to sensations of muscle pain and fatigue even when the muscles are not working hard.

Our R21 Pilot Study Uses 5 Blood Samples before and Up to 48 Hours After Moderate Exercise to Examine Possible Dysregulation of Adrenergic and Sensory Receptors and Cytokines
Current Sample: 20 CFS patients (15 also had Fibromyalgia, 5 only with CFS, tested off pain meds) and 15 healthy controls. They hypothesized
Do CFS patients show greater increases than Controls in ion channel receptors on white blood cells after 25 minutes of whole body exercise to 70% of age-predicted maximum heart rate (less strenuous than Ciccolella study)?
Are these differences maintained at 24 or 48 hours after exercise, when muscle pain and fatigue worsens?

Thesis
The same mild exercise task to achieve the same level of heart rate and blood pressure may have very different effects in patients with CFS and FMS versus healthy, pain-free individuals.

Results
Beginning at 30 minutes after exercise and continuing at 8, 24, and 48 hours after exercise, patients with FMS as well as CFS increased one ion channel receptor (type a believed to be sensitive to muscle pain and fatigue) 2 times its pre-exercise level and increased one ion channel receptor (type p believed to be sensitive to fatigue from animal study) 4 times it's pre-exercise level. Healthy subjects showed no change. Both CFS and FMS patients also showed increases in receptors that detect sympathetic nervous system activity (adrenergic receptors) that were 2-6 times their pre-exercise levels. recent animal studies by Alan Light and Jon Levine have indicated that injecting muscles of rats with propranolol (which blocks beta adrenergic receptors) reduces their pain responses 1-7 days after they are injected with a substance causing inflammation. Kathleen Light and William Maixner also found that very low dose propranolol led to reductions in clinical pain in FMS and TMD patients.

Those patients who were involved in exercising on a regular basis showed some reduction in their post exercise increases in these ion channel receptors and in their beta adrenergic receptors, although they were still higher than normal. This may be one way that exercise training helps reduce pain and fatigue symptoms.

Correlation of Fitness/Symptoms with Cytokine
Among CFS Patients, those who were higher in fitness (which overlaps with being lower in fatigue and pain symptoms) had lower anti-inflammatory and pro-inflammatory cytokines, especially at the 8 hour post-exercise time point. There was an association between having more normal ion channel receptors and more normal cytokines.

Yes, there appears to be "Light at the End of the Tunnel"
Now have hope that these post exercise blood-based measure can help us develop bio markers for CFS and for FMS. They also offer clues as to possible targets for future interventions to reduce muscle pain and fatigue.
Caveat: We still need to know if these patterns of responses are specific to CFS/FMS but may occur in other disorders e.g. MS, post cancer fatigue.

I Have Energy

2008-08-28T19:40:00.000-07:00

I've been off Valcyte for 2 and a half months. These past few weeks I have had great stamina. I mentioned in the last blog that I'd been dealing with lots of fibro pain, especially in the morning when I woke up. I started stretching and doing yoga poses before I went to bed this past week and I feel great when I wake up, in fact yesterday and today are the best I've felt in the last year and a half.

I went to Glacier National Park for a family reunion and was able to enjoy myself, which I was worried about. I went on two or three substantial hikes - on one of the hikes I saw a grizzly bear eating in a huckleberry patch! What's even more remarkable is I didn't have pay back the day after the hikes, and I wasn't in bed for a week after the trip. In fact, I went to Education Week at BYU a couple of days after I got home. I was able to go to about 3 classes a day for 3 days, and walk to the buildings around the campus. It's quite remarkable when you come to think that walking across a parking lot use to wear me out. On Tuesday I went to Thanksgiving Point Gardens, which are huge. The last time I went was in April, and I used one of those battery operated scooters to get around. This time I walked and did fine!

I've had the "sick" look for ever, even before Valcyte. My eyes were sunken in, dark circles, grayish look to the skin. I thought that I must be aging. My mom noticed recently that I didn't have that "sick" look, and that in our pictures from our vacation I looked like my old self again!

Starting next week I will be teaching 8 piano students. I'm excited to have this stamina and I hope it continues and improves even more.

The Offer foundation is holding a half day conference on September 13Th in Salt Lake. It should be really good. My doctor is speaking at it. So anyone interested should go!

I have been lifting weights and the theory is to under do it so you don't have pay back. Anyway I got a kick out of this joke:

Fibromyalgia Exercise
Begin by standing on a comfortable surface, where you have plenty of room at each side. With a 5-lb potato sack in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax. Each day, you'll find that you can hold this position for just a bit longer.
After a couple of weeks, move up to 10-lb potato sacks.
Then try 50-lb potato sacks and then eventually try to get to where you can lift a 100-lb potato sack in each hand and hold your arms straight for more than a full minute.

After you feel confident at that level, put a potato in each of the sacks....

2-months post valcyte update

2008-08-05T17:00:00.000-07:00

I have been going to an acupuncturist about twice a week for the last 6 weeks. It is helping my pain. I haven't had a loratab for over a month and I have been taking less of the tramadol as well. This is a huge improvement. I go to lotussprings acupuncture. I highly recommend this clinic. It has been a lifesaver for me. My pain has reduced so much since I started acupuncture.

If I compare myself to were I was at a year ago I have improved so much in each area: stamina, energy, cognitive function. I had a week were I was really down and out and sleeping all day accompanied by the bruised feeling in my head and itching, but that has passed. I went to Education Week at BYU-Idaho last week and was able to go to two classes each day. So far I have not had pay back and I've been home since Sunday. My biggest symptom right now is fibromyalgia pain all over my body. Hey I'll take dull and achy pain if I have stamina and energy.

A lady I've talked to who has been off valcyte for around the same time as me recently met with Dr. Montoya and he is still stressing that post-valcyte you need to plan on resting for 12 months and not over do it! It's always nice to have that friendly reminder because the temptation to over do it on those good energy days is always there. Montoya has not yet released his information from the HHV-6 conference that was held at the end of June. My doctor was able to attend a special meeting about valcyte with Montoya and other top researches and doctors. She was not able to share the information with me because of confidentiality reasons. I do know that there was significant data showing cognitive improvement in the patients. I recently read an interesting article that found HHV-6 in CFIDS patients caused problems in the brain which could account for the "brain fog" associated with the illness.

I have been debating whether I should tell a recent experience that has been devastating, but I feel like I need to because countless people I've talked to with CFIDS/FIbro who have worse stories than mine have dealt with lack of support from friends and family.

My Best Friend has chosen not supported me through out this past year and now that I think about it there were even hints of her lack of support before my valcyte treatment as well. The last time I saw her she said some really hurtful, below the belt comments about my health problems . We have not talked since this incident. I thought that a person that has known me since I was a little girl and who I thought would know me well enough to know that I want nothing more than to heal and get on with the next chapter of my life would not be so vicious! This event has temporarily affected my confidence, especially in social settings. I am really sensitive about who I want to share my story with and I have had a harder time than usual with the ignorant comments I get such as: "I get tired all the time too" "I work out a lot and I hurt in the mornings too", "Have you tried exercising?", "You've been sick?, well you look great!". I know the only reason people make these comments is lack of education on the illness so it is my job to educate. Sometimes I just can't handle it and I want to be a hermit and not deal with it; even more so since this incident with my friend. So I am slowly picking myself up by the bootstraps after this big blow and I think of this quote a lot "A real friend is one who walks in when the rest of the world walks out".

The other day I was flipping through the channels and caught the end of a discussion between some cancer specialists. They said that cancer support and awareness has really grown over the last twenty years. There used to be a time when you didn't talk about it if you had cancer. No one really knew what to say and I'm guessing that if they did say something it was probably something really stupid. Sound familiar? There is also a high divorce rate in cancer patients because their spouse can't handle seeing their partner sick.

I am so blessed to have a supportive immediate and extended family. The friends I do have are supportive and wonderful. It's interesting how an experience like this weeds out all the fair weather friends. Things are looking on the bright side with my health and I hope to be able to report more good news next time I write.

Article in Good House Keeping about Fibromyalgia

2008-06-18T22:36:00.000-07:00

I forgot to add in my last post that I discovered a 2 page spread in Good House Keeping Magazine, on fibromyalgia. It promoted the website fibrocenter.com. Pfizer pharmaceutical, who sponsors the website is the first pharmaceutical company to have a drug approved specifically for fibromyalgia. They are helping to make the disease more recognized and make help available to more fibromyalgis sufferers. At least 6 million people in the U.S. have fibromyalgia, with 80% of them being women. Alot of people are misdiagnosed, or go untreated, so this website should be a great learning tool and support system. I know from personally experience the frustration of not having a diagnoses, when something is really wrong. I went for 4 and 1/2 years this way. I think it is so important to have a support system when you are going through any kind of illness. Talking to others patients on valcyte and having their encouragement has literally saved me just knowing that I'm not alone in this battle. My extended family and several friends have been so supportive through out this trial of valcyte. I feel so blessed to have those around me understand because I know of patients who have no support except for those online and it just breaks my heart. I've talked about this website before, immunesupport.com. They have a great message board not only for CFS but for the following as well:
AIDS
Alzheimer's
Arthritis
Cancer
Candida
Depression
Diabetes
Lupus
Lyme Disease
Parkinson's
Sinusitis

Look for the ad in magazines and spread the word. I will just add that I went to the acupuncturist yesterday and my pain levels have gone down today! I have another appointment tomorrow. I did acupuncture a few years ago and he gave me some Chinese herbs that really helped me and then I had to stop going when I went off to college. I know this acupuncturist suggested herbs as well, but he wants to make sure they don't interfere with my other medications, which I really appreciated. Holistic/alternative health has always been fascinating to me, probably from my Aunt's infuence. She was always trying unique things for her health. So I like to have one foot in the western medicine and the other in the alternative world. I'm excited to see what happens :)

After 11 months of Valcyte I'm finally done!!!

2008-06-11T17:26:00.000-07:00

My leg/foot pains have gotten worse over the past three weeks I was in the Emergency Room because my leg pains were getting severe. At my doctors appointment I told her about my pains.On bad days my legs/feet hurt from light walking around the house and up the stairs, and from being lightly touched. The inner part of my foot below the big toe and above the heel hurts the worst and the weird thing is it's on the exact same spot on both feet!

It is listed that Peripheral neuropathy is a side effect of Valcyte. I tried icing my feet two nights ago and it made my pain worse. Icing is apparently not good for neuropathy so I am pretty sure I have it. I have also have started to feel burning/tingeling sensation in my hands, another reason for me to guess it's neuropathy. Dr. Bateman thinks it could possibly be a component of the virus manifesting itself. I read an article on neuropathy stating that one cause of neuropathy is from the herpes family viruses. Since my leg pains didn't start until I was on valcyte and have been getting worse she thought it best that I stop. I've been on valcyte for 11 months and was going to try to do a year, but at this point we both agreed that 11 months was a good shot and that one more month wouldn't impair my healing process. I've been taking Ultrum, Loratab, and Gabapatin to manage the pain, all which have a sedating effect so my head is in outer space a lot! But don't worry I don't drive. The drugs still are not cutting it pain wise and I really don't want to take anything stronger than Loratab so I am trying acupuncture tomorrow. I pray that this helps because I really want to start feeling like my normal non-druggy self again!

The good news is that I have good days with my energy. I drink this stuff from Costco called Zip Fizz. It has caffeine in it through green tea so it does not deplete the body from its minerals or give you a "crash" like coke. The Zip Fizz helps with my energy. We got a new kitten named Hermione that is so cute and playful. I have grown so attached to my other cat, Mama Kitty. She left our house for few days because she got jealouse of the kitten. When she came back we had quit reunion! She is the most affectionate cat ever! I went on a garden tour of Avenue homes in down town Salt Lake. The beautiful flowers and outdorrs got my mind off the pain and I held up well for the day out. I have been going to a chiropracter that has really helped my back and shoulder/neck pain due to a hip misalignment and just fibromyalgia in general. I am wearing my hair up these days because my sensitive scalp and headaches are gone:) My anxiety is only brought on by pain. I know of a few people who have had a terrible time with anxiety after stopping valcyte. I have been off valcyte for 2 weeks and have not had that problem with abnormal anxiety. I recently started drinking GAC and Acai berry juice to boost up my antioxidant levels. My cognitive function is continuing to improve and I try to read every day. Being off valcyte is a process as well and I hope I am one of those people that continue to progress after stopping valcyte. I am going to ask my doctor about taking Valtrex, a less potent anti viral that Dr. Montoya puts his patients on after valcyte to prevent the HHV-6 from replicating. Take care everyone and all of you on valcyte hang in there!

Month 11

2008-05-18T22:43:00.000-07:00

I've been on valcyte for almost 1 year! I never expected to be on it this long but life never does turn out the way you think it will! Dr. Montoya's second trial has ended and I know that some of the patients who are still struggling he put back on valcyte since they were only on it for 6 months during the trial. I definitely think future studies should do a 1 year trial of valcyte with a follow up of how the patients continue to do. I am excited to hear what Dr. Montoya has to say at the HHV-6 conference. My doctor said she might be going to it so I'll have to get the 411 from her. I wonder why some people on valcyte respond immediately, I recall the lady from South Africa who was hiking and running 6 weeks into valcyte. Some people I have read about see improvement a few months after they stop taking it. My experience has been that it is gradually helping me. I wonder what my health situation will be like in a year from now. Will I be at 90% recovered or even 100%? It's hard to say what level I'm at right now because it is not consistent. On a good day I'd say I'm 75%.

I had some really good weeks in April. I got the valcyte flu all over again last week with swollen gland, sore throat,itching, fatigue etc. But I bounced back pretty well to a good stamina level. The pain I have can get in the way of my well being. I have some very bad back and neck pain and of coarse continue to deal with leg pain. I just try to stay on top of my pain medication and Tylenol as best I can. I'm a little worried I might have the liver of a heavy drinker when this is all over due to the many meds I'm taking that affect it! So I have a back massager chair and I did that last night and I think it bad it worse! Anyone with fibromyalgia have that experience? I'm not sure if a chiropractor would help or not. I've ruled out getting massage after last nights experience! I have been trying to be more active. I rode my little brother's razor scooter and the next day I could hardly walk. I still have pain in my thighs from it and that was on Thursday!This is typical of CFS/Fibro. I guess I have to keep in mind that I have been sick for a year and not moving around a lot so my body is going to have to get use to my activity level. I think for now I'll stick to my yoga. I am very grateful for the good days I have. Just in time for this beautiful spring weather. My family and I have been very prayerful to find a cure for my illness and we feel very strongly that this is the answer. I also have felt that the process will be slow, but that it will work!

I've talked about my aunt before who passed away from kidney failure. Towards the end of her life the kidney dialysis really started to take a toll on her body and she was very ill. I ran into a poem she wrote during this period and it really touched me as I feel I can relate to it right now in my own life.

A Journey of Faith
Once asleep now alive,
Once despondent, now I arrive.

Blinded darkness a clear bright sky,
Opens life, again I reply

Deep despair, hope appears
Where faith regains its hand over fear.

Desperation, fear and hate,
I cry to God “What is my fate?”

My child, my child, The Savior replies,
“This too I suffered when I bled and died.”

“Time is short, so carry on,
Your faith strengthened, now you’re strong”

“This life seems long and hard to bare,”
“It’s not my daughter, I’m always there,”

“When your mission on earth is done,
Angels will song praises that you have come.”

“You’ll sit before my throne above,
Be crowned with glory and praise and love.”

Chronic Fatigue Awareness Day

2008-05-12T18:30:00.000-07:00

May is Chronic Fatigue Syndrome/Fibromyalgia Awareness Month and May 12th is the official awareness day.

I was very fortunate to have the opportunity to speak publicly about my illness and valcyte treatment a few weeks ago. I live in Utah and we have a huge celebration and state holiday on July 24Th called Pioneer Day. On this holiday we honor the first Mormon pioneers who came to Utah in 1847 escaping religious persecution. Part of the festivities for this holiday includes a Days of 47 Pageant for young women. I was able to participate as a contestant in this pageant a few weeks ago. The pageant is unique as it does not have a swimsuit or talent competition and the contestants are judged on their community service, education, goals and speaking skills. Those chosen as royalty receive nice scholarships.

The judges were given an information sheet on which I included my struggle with CFS. In the interview portion I was asked several questions about Chronic Fatigue Syndrome and the Valcyte treatment I've been on. I explained virus induced CNS dysfunction and how the drug Valcyte works. One of the judges got emotional and told me he had a daughter who had CFS and told me there was hope in getting better as his daughter recovered and now lives an active life. I got emotional too and started crying as I told my story, but despite the tears I made it into the top 10 out of 40 girls. I also was asked questions about my illness and quest in being a CFS activist. I expressed the frustrations for myself and many other CFS patients. that have to put up with the trivializing name "Chronic Fatigue Syndrome", where fatigue is only one of many symptoms of this complex illness. I also explained that there was a petition currently going around to change the name of the disease and encouraged people to get on the bandwagon and sign it. There were several hundred people in the audiences and the judges were all influential people in the community. I was so glad that I got to get the word out in my community that CFS is a real and serious illness. After the pageant all 5 judges pulled me aside and told me that they were touched by my story and wished me a successful recovery. A photographer also came up and told me that he struggled with CFS and in fact didn't know how he was going to make it through the day taking pictures of all the contestants, etc. He was glad someone was getting the word out about the illness.

Initially, I was very nervous about how the judges would respond to my story of Chronic Fatigue Syndrome. It turned out to be very positive. Having an accepting audience and having the opportunity to educate others in my community about this illness was better than winning! Plus I don't think I'm quite ready for the energy demanding duties of being in the Days of 47 Royalty. But who knows what will happen next year, I might just be a bundle of energy!

One more thing to add: I recently read an article stating that Florence Nightingale had CFS the later part of her life so I linked that article.

Month 9

2008-04-15T01:15:00.000-07:00

It's about time I write an update. I reached my 9 month mark on valcyte last week. Earlier this month I had an appointment with Dr. Bateman. We decided that I should continue on valcyte since I am noticing improvement. I got my 3 months supply and I am glad to say that I am still getting excellent insurance coverage. I also got some lab work done so we can figure out why my legs are hurting all the time. I got my b-12s checked and I got tested for a muscle disease.

Two weeks ago my friend got married and I was her bridesmaid. I flew to Sacramento were the wedding was. I walked around old town Sacramento, the Sacramento Temple grounds, etc without feeling exhausted. I have learned through trial and error over the years to be smart about things and take breaks and sit down. I started getting some anxiety again on the trip, but I realized that I had ran out of Fish oil and had not been taking it for a few weeks. I bought some more and I really do think that it helps with mood. The anxiety is gone now!

My family and I took a trip to Zions National park this past weekend. It's great because there are buses that take you to all the sites. I went to a few of the sites. Some site had a longer hikes of a mile or more to get to the main attraction and I didn't want to wear myself out so I sat by the trial head and read a book and enjoyed the beautiful surroundings! I did really well on the trip. My leg pains are my main complaint, but my doctor gave me a script for Loratab just to get through the trip, which took the pain away. I wish I could take it all the time, but it is very addictive and I don't want to deal with that!

This has been the most consistent week I've had with excellent stamina. It's interesting because I can tell that my body can handle more and that it's healing. I don't know how to explain it. I am so excited because I am starting to feel like my old self again! I just need to get rid of the leg pain and I will feel even better. But for now I am so happy to be doing things that normal people can do. Yesterday I drove a half hour to Salt lake. I have not driven that far in over a year. I hope to continue to report that I am improving and to all of you on valcyte hang in there. I really do think there is light at the end of the tunnel.

Month Eight

2008-03-12T22:05:00.000-07:00

No longer forward nor behind
I look in hope and fear;
But grateful take the good I find,
The best of now and here.
John G. Whittier

I am so excited for spring because it is one of beautiful things I can admire in the here and now that the above quote speaks of. A fellow valcyter inpired me to seek out the uplifting things in life.

I've been on valcyte for 8 months. This process is very gradual. Two steps forward and one step back is what has happened the last few weeks. My stamina was improving last time I wrote, which I still think is doing well. Some things have gotten in the way of me enjoying my stamina though.

I started getting terrible pain about three weeks ago. For a couple of mornings there my whole body would cramp up and I could hardly get of bed. It's not that bad now, but I do feel like I've been sleeping on a board. And I have a very nice, expensive mattress and pillow. My neck gets terrible kinks and my shoulders are tense. So I went and got a massage. It felt wonderful the first day. But the next morning I felt like I had the terrible flu, which I wasn't surprised. All those nasty HHV-6 toxins were floating around and moving out, so I guess it was a good thing. My legs have always been a complaint. SO the massuist I went to said that my legs probably had a lot of lactic acid build up. I'm starting to read and research about lactic acid in CFIDS/fibromyalgia. Apparently CFS patients over-produce it and are very sensitive to physical activity. For example: I was sanding a small block of wood last week and next morning my arms and hands hurt very badly from such a small task. If anyone has any information about lactic acid, how to drain it, or any suggestions please let me know! If I run on to any info that is helpful I'll post it. I'm at my wits end with the legs pain! Oh I'm on a new muscle relaxant called Skelaxin. It's helping some. I'm continuing to take Tramadol as well. Nothing works as well as the Percacid, but I don't want to get addicted.

My heart palpitations/Orthathstatic intolerance/low blood pressure has been acting up. So that can add to feeling sluggish when I feel light headed all the time. Does anyone else have this act up out of no where even when they are guzzling water, doing the high salt intake, Midodrine, etc. The Nurse Practitioner said that sometimes it will do just become a problem for awhile and then go away.

I have that weird pulling feeling in my head. My scalp is very tender and I've given up on trying to have presentable hair. I had dark circles and dull looking skin a few days ago. I did a detox bath and the circles went away and my skin looks healthier. I'm pretty irritable and short tempered and anxious from pain. But you know this is all part of the herxing and valcyte. I've never experienced this before. So chemotherapy patients have to deal with throwing up and their load of side effects and us valcyte therapy people have our load to live with too. I am hoping and praying that I will be able to handle all of this for however long it may be. I guess that's where religion comes in or else it would all be pointless to me. Whether you believe in God or some other higher power I think that's what helps us get through these sort of things along with the good people that bless our lives.

February 7th 2008

2008-02-07T22:40:00.001-08:00

I am still feeling improved stamina. I feel like I actually have a life! I'm teaching piano consistently each week and look forward to it. I'm planning a Bridal Shower for my friend.

I'm starting to get out more. Being on valcyte has really made me come to grips with my condition. I finally realized that I shouldn't be ashamed and be in denial about having CFS. I have my whole speech down and a lot of come backs for when I get asked the big questions "So Desi, what are you up to right now?, are you working, and when are you going back to BYU-I?". There is a game I learned called "the rubber band game". SO when you know you’re going to be in a difficult situation, in my case any social situation, you wear a rubber band around your wrist and for each time someone says something that makes you feel uncomfortable or is hurtful you snap yourself with the rubber band. For each snap I have to say a good thing about myself or something I'm grateful for. Playing this game changes my whole perspective of socializing.

I've had more pain than usual this week. I wake up with a lot of stiffness and pain in my neck and shoulders and as usual my LEGS. The first few hours after waking are the toughest and as the day goes on I tend to feel really good in the evenings.

I went to a question and answer session about Fibromyalgia and CFIDS last night. My doctor was on the panel as well as a lawyer who helps people get disability benefits and a psychologist. There was a lot of discussion about exercise. I learned that there are 3 areas of physical fitness CFIDS patients need to think of when it comes to exercise: 1. Stretching and Flexibility 2. Strength Training 3. Cardiovascular
Dr. Bateman said that CFIDS patients usually can handle the first two areas because you can do them on the floor or sitting. Lots of patients deal with Orthostatic Intolerance issues (I do) and get tired from cardiovascular activity. She said that swimming, Pilates, and yoga seem to be better tolerated cardiovascular activities for patients. All three of the panelist stressed the importance of knowing your limits not only in excericising but in day to day activities.

I was so glad to see some younger people at the meeting. There were two girls there with their husbands who were my age. My heart went out to them. They both asked questions about disability and insurance. I feel so blessed and fortunate that I am on my parents insurance and have excellent coverage. I think I loose coverage at 24 so I'm glad that I was able to go on valcyte now and I'm glad that I made certain choices the way I did so I could be in this fortunate situation.

There's a campaign going on right now to change the name of Chronic Fatigue Syndrome. On my site there's a link in the left corner to sign a petition. I also sent out an email to those on my Google groups contacts. My doctor is on the committee for the campaign. So check it out and go vote in May!

Why the fuss?
The term chronic fatigue syndrome trivializes the seriousness of the disease and damages patients every minute of every day. Imagine calling Parkinson's disease chronic shakiness disease! Or calling Alzheimer's chronic forgetfulness disease! It would be reprehensible.

What's more, while physicians equate the CFS experience with that of a cancer patient undergoing chemotherapy, few patients receive adequate medical care. The severity of CFS is as significant as that experienced with other serious illnesses, such as multiple sclerosis, COPD, end-stage AIDS, and kidney failure; yet CFS consistently receives among the lowest in federal dollars for research.

Finally, in countries around the world, including Canada, CFS is known either as ME/CFS or simply ME. And the International Association for Chronic Fatigue Syndrome - or IACFS - voted to change their name to the IACFS/ME. This is the largest organization of CFS researchers and clinicians in the world. It’s time we followed suit. The vote will occur throughout the month of May, eliciting the will of patients across the country. read more

Back on Valcyte

2008-01-24T17:00:00.001-08:00

I am back on Valcyte. I was off Valcyte from Dec. 16 to Jan 10. I thought that my herxing symptoms would cease and that I would feel a dramatic change. Well, I continued to herx the whole time I was off including, headache, leg aches, fatigue, itching, etc. There was no difference at all, which led me to conclude that I was still in the process of killing alot of bugs. Had a Dr. appointment a week ago, and Dr. Bateman agreed, and I am on Valcyte for at least another 3 months.

Dr. Bateman addressed the anxiety issue. Her theory is that perhaps because I am improving in stamina and getting better slowly, I made be taking too much of some of my meds. Taking too large a dose of some medications can cause anxiety. So we are experimenting with taking some medication completely off the list, lowering the dose on others, and changing the time of day when certain meds are taken. We are hoping that this may help. I am no longer taking Allegra D as the "D" part is known to cause anxiety! Big surprise.

Positives:

My anxiety is lessening. It comes and goes, and is less intense, where it use to be a constant and intense companion a few weeks ago. I have found that ice cream seems to help! Seriously. The last couple of days I have noticed that after an ice cream cone the anxiety seems to evaporate! Could it be that the shot of dopamine stimulated by the ice cream counters the anxiety? I continue to have good stamina. I went to 2 church meetings on Sunday - 3 weeks in a row. I never use to do that!

Negatives:

I still deal with pain, but it is entirely manageable. My cognitive function has been a little fuzzy lately. That's about it!

Update January 9, 2008

2008-01-09T21:12:00.000-08:00

I haven't updated for a while because I have been unsure of my plans. I have been off Valcyte for several weeks now and expected the herxing to stop. Interestingly, there has been no difference in the way I feel. I continue to have some very good days along with days of flares with significant herxing. The anxiety is still there, but it has gotten better recently.

Positives:
I had 3 days December 19-21, that I had especially good energy (around 85%). These were the best days I have all year long, even pre-valcyte! I overdid it, but still it was great. I have had other days that I have some symptoms, and considerable energy around 40-70%. My anxiety is not as bad as last month. My stamina definitely continues to improve slowly. An example of my improved stamina is that I walked all over Temple Square to see the Christmas lights and it didn't wear me out. I just signed up for an online biology class and have recently added a piano student or two. So I'm gradually improving - slowly but surely!

Negatives:
I continue to have herxing symptoms along with flares. My legs have been especially painful, along with some headaches, itching, and fatigue. The symptom I'd most like to see leave is anxiety. My nerves seem more sensitive to all kinds of stimuli. I am finding out that other patients have also had an increase in anxiety around the time they start to feel better energy-wise. Apparently it is a physiological response to inflammation and neurotoxins in the brain (amygdala). The physiological explanation of anxiety makes alot of sense to me. Sounds like it is another temporary part of herxing that will eventually subside. I am taking pharmagaba, a supplement for the central nervous system. I think it is helping.

I have a doctor's appointment next week where I will discuss where I am going with my Valcyte treatment. My thoughts are that as long as I am feeling the same off Valcyte as on Valcyte, I may as well continue to take it. Dr. Montoya is recommending patients continue to take Valcyte if they are still herxing at 6 months.
The goal is to make sure all the bugs are dead. It is a long process, but hopefully well worth it.

6 months on Valcyte. I made it!!!

2007-12-16T23:30:00.000-08:00

Hello Everyone,
Happy Holidays! I made it through 6 months of Valcyte and couldn't have done it without the love and support of my friends and family. Thanks again for the little notes asking me how I am doing, and the words of encouragement. The little things are big things and help me through the very hard days!

Big Question:

I ran out Valcyte pills on the 6 month mark, December 14th. Most people on the first cinincal trail only took Valcyte for 6 months and they were done. There are however many patients who may take longer to recover and they contine to take Valcyte for however long it takes. I have a script for another 3 months of pills. The big question is, "Do I want to continue Valcyte"?? I am going to fill the script and then sit on it. Big decision. On good days I feel like I could continue Valcyte treatment, but on bad days I feel like I want to throw in the towel. Anxiety is one bad side effect of this Valcyte treatment and I feel like it gets worse the longer I am on the drug. When the pain gets bad then the anxiety is exacerbated and it's a bad combination. It is interesting that definitely my stamina has increased - When I feel good I feel really good, but when I feel bad it's awful. If I could take the edge of the bad days that would be encouraging. Does anyone else find that their anxiety has gotten worse even though their stamina has improved?

Positives:
I am ecstatic that my circulation has done big 180! My legs use to turn purple and my feet were always cold. I have pretty much been cold my whole life. Well, for about a month now, I have been toasty warm. I am shocking my family when I ask them to turn down the heat rather than turn it up! I am always warm and I find that so interesting and great. Has anyone else experienced their circulation getting better?
I understand that it may be related to the adrenal function.

I forgot to mention that I went to Disneyland 2 weeks ago and over all it was a good experience. I used a wheel chair, but had the stamina to do the airport, rides etc. and not crash. I came home and continued to have good energy for another week. So I was excited about that.

My mom has noticed that my spelling has gotten better! So she thinks my brain fog is lifting. I am able to do tasks that require concentration and patience, like crafts etc.

I performed a couple of times in the last week or so a sleigh ride duet with my Mom. I had no problem practicing my part and performing with ease. Sometimes I have not had the brain stamina to even practice, so this is good! I have been doing some reading that requires more intense concentration and I can do that now, where I couldn't before.

I have also been able to do more household chores, like dishes etc. that I had almost forgotten how to do! (just kidding)

Negatives:

The last week I have been down and out. My symptoms were jaw pain, fatigue, leg aches, headache, and anxiety. Some of the my anxiety may have been hormone related, but not all of it. After a week of these symptoms, they seem to have lifted and I am having a great day today.

Strangest Symptom:

The strangest symptom I have had is a popping and pulling feeling in my head. I will wake up to a loud popping sound in my head, then everything blacks out. I also feel like my eyes are being pulled back! Weird! I have had this symptom come and go over the last few months, most recently this last week.

Functionality Scale:

I've ran across several functionality scales for people with CFIDS over the years and I like this one the best thanks to someone who posted it one immunesupport :). Partly because I am a younger person in the CFS world and this was created especially for children and youth. This might help everyone including me understand how the valcyte has helped me over these last 6 months.

I'll consider pre-valcyte the six months before I started the drug January 2007-June 2007. So before pre-valcyte I was around 40%-60%. 70% would be very good for me, which I did experience some days. For those of you with CFIDs you know that one day you can be feeling great and the next day you will be in bed. I had some days that would be 30% if I go sick or overdid it. Those would be very bad days. I took one online course that ended just a few weeks into my first month of valcyte. They talk about using wheelchairs but I had too much pride until the valcyte to ever use one. I usually just made sure my outings required little walking or lots of places to sit down and rest. I could go on short walks around the neighborhood with my family.

Once I started the valcyte I went down hill into the Very Severally Affected Category,with a lot of days being 10% - 20%. Those nice walks down the path were non-existent for me. I started to gradually make my way back up and thought I was over the hard part and then I went down again. These last six months of valcyte I never would have been able to take a college course. Any kind of commitment has seemed impossible. But I am considering taking one course for the spring semester! So I think that says alot about how my stamina has improved.

FULLY RECOVERED
100% No symptoms even following physical or mental activity. Able to study and work full time without difficulty, plus enjoy a social life.

VIRTUALLY RECOVERED
95% No symptoms at rest. Mild symptoms following physical or mental activity - tire rather easily but fully recovered next day. Able to study or work full time without difficulty but a slight restriction on social life.

MILDLY AFFECTED
90% No symptoms at rest. Mild symptoms following physical or mental activity - tire easily. Study/work full time with some difficulty. Social life rather restricted with gradual recovery over 2/3 days.

80% Mild symptoms at rest, worsened to moderate by physical or mental activity. Full time study at school/ college is difficult, as is full-time work, especially if it is a crowded, noisy or busy environment. Home tuition or part-time study without difficulty.

MODERATELY AFFECTED
70% Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity limited. Part time study at school/college is very tiring, and may be restricting social life. Part time work may be possible for a few hours in the day. With careful pacing out of activities and rest periods, one may discover windows of time during the day when one feels significantly better. Gentle walking or swimming can be beneficial.

60% Mild to moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity very limited. Study with others or work outside the home very difficult unless additional support is available, e.g. use of a wheelchair/quiet room for a rest period. Short (I-2 hours) daily home study/work may be possible on good days. Quiet, non-active social life possible.

MODERATE TO SEVERELY AFFECTED
50% Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Mid-day rest may still be needed. Simple, short (1hr) home study/home activity possible, when alternated with quiet, non-active social life. Concentration is limited. Not confined to the house but may be unable to walk without support, much beyond 100/200m. May manage a trip to the shops in the wheelchair.

40% Moderate to severe symptoms following any activity. Care must be taken not to over-do one's life style at this stage. Not con-fined to the house but unable to walk much more than 50/I00m, usually requiring aids such as walking stick/crutches. May manage a wheelchair trip to the shops on a quiet day. Requires 3 or 4 regular rest periods during the day. Only one 'large' activity possible per day - friend dropping by or doctor's visit or short home study (half hour at a time) etc - with space usually requiring rest day/s between.

SEVERELY AFFECTED
30% Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult. As mentioned in the report on ME to the Chief Medical Officer, (2002*4) and the DFES report on education for children with medical needs (2001*5), children may be too ill to access any education at all. This should be respected and kept under review.

20% Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time.

VERY SEVERELY AFFECTED
10% Severe symptoms following any activity. Weakness and pain in arms or legs. In bed the majority of the time but feeling more stable and less dizzy. No travel outside the house. Concentration very difficult indeed. A friend can be seen for ten minutes or so.

5% Severe symptoms almost continuously but may be possible to be propped up in bed for very short periods. Weakness and pain in arms or legs can give rise to paralysis; dizziness and nausea. Small, personal care may be possible (e.g. if washing equipment placed on the bed it may be possible to wash some parts of the body). As with 0%, sudden jerking movements can be a problem and what may be described as panic attacks are felt. No TV is possible but a little quiet music or audio book may be listened to for a few minutes. A friend can be seen for a minute for a hug and a few words.

0% Severe symptoms on a continuous basis. In bed constantly, feeling extremely ill even with permanent rest. Severe dizziness makes it almost impossible to be propped up in bed for longer than a few minutes at a time. Light and noise are very painful to the eyes and ears - curtains are closed and earplugs are needed. Severe pain almost anywhere in the body with the skin feeling very cold and extremely sensitive to touch. Unable to care for oneself at all; washing needs to be done a tiny bit at times throughout the day. Nausea and severe fatigue make eating extremely difficult. Liquid based food preferred - little and often. Occasionally, nasal feeding tubes are required when the energy to chew is completely spent. Any stimulus worsens the feeling of being severely ill, with no movement in the bedroom preferred. Any visitor to the room is almost impossible. Talking, even to the carer/family, is often impossible. This is often misread as being 'selective mute'. Severe adrenaline rushes felt with heightened sensitivity; jumping and over reacting to doors shutting/door bell ringing, etc. Sleep pattern often completely reversed. Source: http://www.ayme.org.uk

Week 25

2007-12-08T05:35:00.000-08:00

This is the best week I've had since starting valcyte (I'll be six month into it next week).

Monday night I went out to dinner and I drove myself. I had some brain fog. I had this gift certificate that I swore I put in my purse but when the check came it wasn't there. The funny part was my friend and I decided to order this yummy chocolate cake that was huge and pricey! We were freaking out over the check:) And I lost my bank card that night after going to the bank. I still can't find either of the lost items!

Tuesday I had a doctors appointment. My mom and I got really excited because as we were driving there we discussed how I was doing overall. I have to fill out this form before I go in and rate on a scale of 1-10 how I am with the following:
Fatigue
Sleep
Mood
Pain
Aches
Activity level

As we got talking we realized that I am to the levels I was pre-valcyte! Granted I wasn't able to go to school this last year and was still struggling obiously or I wouldn't be on valcyte, but I'm not as housebound and bedridden as I've been. And my stamina is defiantly improving. I know I wrote about how I went to the mall in July just to get a pair of shoes and as a result of this trip I was exhausted and in bed for a couple of days. That wouldn't be the case now! The nurse practitioner said to continue valcyte and Dr. Bateman will decide what we should do when I see her in January. I am just hoping this love-hate relationship with valcyte will turn into a deep love! Two weeks ago I was really considering just completely stopping at six months. I'll be completely honest and say this has been the most emotional trying time in my life and my nerves are shot. I think anyone would be this way after having the flu from hell for six months! I did a detox bath that evening and then went to a movie and again drove there! I didn't feel the effects of the bath till the next day. My tub water had a weird color to it after I got out, so maybe that's a good sign???? On the immunesupport board some people recommended lowering the measurements of the ingredients I put in so I don't feel so yucky the day after.

But for once it is nice to know that my fluish feeling on Wednesday and Thursday were due to hydrogen peroxide and epsine salt! I just pray that those weird baths really do bring those nasty toxins out of my body.

Friday I woke up feeling like I had refreshing sleep for a change! I got a last minute phone call from my best friend's boyfriend who wanted me to accompany my friend on a scavenger hunt which led to him with a bouquet of roses and a ring at her favorite restaurant! It was the cutest proposal ever. I got my hair cut which was great since I have not had one in four months and I've been trying to get around to that. And I actually drove again! I usually just feel to foggy to want to pay attention to the road so I've avoided driving. It snowed all the way home as I was driving over a steep mountain pass, and I started to get anxiety but I made it home safely. I was praying the whole way that I wouldn't slide and fall off the cliff of the mountain! I came home took a hot bath (no detox stuff this time) sat in my back massage chair and sipped a zip fizz and then, somehow I made it to the one and only performance of The Messiah our county was putting on. Being able to go to that just brought so much joy. I would have loved to be able to have sung in the choir but I was just thankful to be there! I was flippin' crazy for doing all that in one day but I really was glad that I got to see my friend's proposal!

This week I have not dealt with terrible headaches, my leg pains are not leaving me in tears like they have before, my scalp is less tender (I noticed this when I got my hair cut), and I have not had rashes and itching :) I only had to take one form of pain killer once yesterday!

Finding Relief for Fibromyalgia

2007-11-27T13:25:00.000-08:00

My Doctor was on the news last night discussing a new drug for fibromyalgia called Lyrica. Check out the interview.

Finding Relief for Fibromyalgia Sufferers
Reported by: Jill AtwoodLast
Update: 11/26 10:37 pm
SALT LAKE CITY (ABC 4 News) -

It's a complex syndrome that baffles doctors and debilitates patients. There is no known cure for fibromyalgia or chronic fatigue syndrome. In fact, some doctors still question the validity of these illnesses. But a new breakthrough is forcing the medical community to take a closer look.

Unexplained pain, flu like symptoms, difficulty just getting out of bed; these are only a few of problems encountered by CFS and fibromyalgia sufferers.
For years many patients who suffered from chronic fatigue and fibromyalgia were told "it's all in your head". But now science is backing up those claims.

Maureen Higham is often tired, miserable, in pain, and desperate to just feel normal. Higham is just one of the millions that suffer from chronic fatigueand fibromyalgia. It is a debilitating, complex syndrome that has costher everything.

"You go through a period where you start to doubt yourself and you think 'maybe I am crazy' Do crazy people think they are crazy?" says Maureen.

For nine years this has been her life; doctor after doctor, test aftertest, frustration after frustration.

"There was one doctor as we were trying so hard to find answers, he said to me well at least it is not life threatening, and I looked at him and I thought I'd rather it be life threatening. This is life stealing," says Higham. Dr. Lucinda Bateman has been working with fibromyalgia and chronic fatigue patients for over a decade.

She says nationwide, 3 to 6 million people suffer from one or both, as in Maureen's case. Both affect the central nervous system and doctors say each patient follows a similar pattern, with similar symptoms. Diagnosis can be difficult, especially with CFS, but with fibromyalgia there seems to be a more straight-forward criteria. Fibromyalgia can usually be diagnosed through a series of 18 tenderpoint tests. Patients complain of widespread pain and stiffness. For years, finding the right individual treatment has boiled down to trial and error, but finally there has been a recent breakthrough;something doctors and patients have been waiting for. In June of this year, the FDA approved Lyrica, the first drug madespecifically for treating fibromyalgia. Suddenly, doctors who wereuneducated are eager to learn more, and patients have new hope.

"This is going to catapult the education of doctors into the modernage of fibromyalgia," says Dr. Bateman.

Doctors say Lyrica reduces the release of chemicals in the brain that amplify pain signals throughout the body. "I think the first thing I noticed was better sleep...a better sleep pattern where I actually laid down and sleep came to me instead of me trying to search for it," says Richard Sloan, a fibromyalgia patient.

Sloan says it was so bad three years ago he wouldn't have been able to walk around a park. "After about 3 or 4 months I was like, 'wow this stuff really works',"says Sloan. Today, thanks to Lyrica, he's running and training for a career in law enforcement. "I'm able to spend better quality time with my children I don't think enough can be said for the amount of energy that I feel. I have now,"says Sloan

But Dr. Bateman is quick to remind patients what works for one, maynot work for others; like in the case of Maureen Higham. She's taking Lyrica, but so far no nothing, no improvement. So, she's still searching...still suffering. Still, Maureen continues hoping one day she will have her life back. "People say that to me 'I don't know how you do this. I could never do this,' and I'm like 'give me another alternative'," says Higham.

Dr. Bateman says patients benefiting from Lyrica report an 80 percent improvement in their pain, but there some side effects initially so you have to weigh all those factors when you speak with your doctor. Also there is another warning about all those herbal remedies and "cure-alls" you find on the Internet for fibromyalgia and CFS. If they are tied to profit, be leary.

For more information log onto:
www.cdc.gov
www.fda.gov
www.fcclinic@xmission.com

Just starting month 5

2007-11-20T08:55:00.001-08:00

Hello, Hello and wishing everybody a Happy Thanksgiving. Last week I had two really good days with great stamina. Half way through the week I was not sleeping well; I kept waking and never reached the stages of deep sleep, so that of coarse slowed me down. I am glad to finally be having some good days. Good days were unkown a few months ago. Someone asked if I noticed cognitive improvement. Well when I was a little girl I would always day dream and not know at all what the teacher was saying. So I've always been a little bit of an artsy scatterbrained as it is, but My cognative function has been worse on valcyte than it ever has been. HOnestly I don't know if I have had improvement. I just know there are some things my friends and family will talk about from the past "remember when..." and I can't remember a thing about it. I feel so badly for those who can hardly write or read because of the brain fog - I hope you guys improve!

I decided to try some detoxing. I found the following recipe on the immunesupport website to detox in the tub:

1 cup epsine salt
2 cups Baking soda
1/3 cup hydrogen peroxide
2 tsp glycerin (to keep skin moist)

The person who posted this said they sometimes can't handle this bath because they end up in so much pain/achenes from the toxins being released. I think he said the hydrogen peroxide is what causes this. If you try this drink lots of water while in the bath and after. The salts really make you sweat. Be careful getting out, since you might feel really weak and light headed. I was nauseous for a while after I took the bath. So I tried it on Saturday night. I woke up feeling like I had the flu. Every part of my body was in pain in weird place like my ribcage, hips; my little brother would cuddle by me on the couch and it hurt me too much to have him laying on my side. I feel bad trying to explain to him that he can't give me a hug, but he is really sweet. He rubbed my legs for me :) It's Tuesday and the pain kept waking me up so I didn't sleep well at all last night. I took some Utlrum and it helps taking the edge off. I know caffeine isn't the best thing to drink for your health, but a Dr. Pepper helps take the edge off too! I think you are supposed to do the bath every three days. My family advised me to hold off so I can enjoy Thanksgiving! I'll take their advise and wait after the holiday. I figure that if I'm getting rid of that virus then I'm willing to feel cruddy and lay in bed all day. It's not like I have a pressing schedule! My job is to get better. I also wanted to mention that I have had dark circles under my eyes off and on for the last 5 months. Last week they were sickly. I looked like a concentration camp victim with the buggy eyes popping out. They are looking better these last few days, so I wonder if the bath did something? I know having a sinus problem can make the dark circles pop up. I'm also looking into the lymphatic massage that John talked about. I found a website that talks about this massage. I have not watched the videos yet, but I'll link the site anyways for anyone interested. Enjoy your Turkey with mashed potatoes and pumpkin pie!

November 2-9

2007-11-09T22:36:00.000-08:00

So do you hate trying to remember to eat all of your servings of vegetables? I know I do. My aunt gave me this great recipe with all the foods I've been told to detox with!

"Green Drink"
1 large apple
4 celery stalks
1 cucumber
Juice of 1 lemon
Juice of 1 lime
A handful of spinach
1/2 inch piece of ginger

Put it in the blender and liquify. The taste wasn't bad for a health drink and I hate juicing and I didn't have to use that blasted machine so that was a pluse!

So I had some amazing days this week. I swept the floor and did the dishes and laundry for the first time since I started valcyte. I was thrilled. My cold wasn't going away and BAM... a sinus headache came on. I am on antibiotics and the sinus headache is gone. My energy suddenly was zapped. Maybe I did too much, but I think this sinus infection is mostly responsible for wiping me out. So I am peranoid about getting sick.

I read the following suggestions from a Doctor on the Standford trial. He emphasized the following for a good recovery: 1.Do as little as possible. Building up slowly, Adding one small thing here and there. 2. We need to SLEEP as much as possible! 3.) We need to stay away from anyone who has a cold or flu, and stay away from crowds. If we must be in a crowd we need to frequently be handwashing in those situations; (I'm personally trying to make a concious effort not to touch my face when I'm out and hand sanitizer is my new best friend.) One of the trial patients was discouraged from how ill they were feeling and he reassured this patient that some people need as long as six months or more on valcyte, and that they have patients who have needed it for as long as a year.

I am interested to see how I feel after this sinus infection is over since I had some very good days this week. My pain and achiness have really acted up this week. I am worse when I wake up in the morning but get better as the day goes on. I still have a lot of symptoms (itching - I have found over the counter aveeno menthol lotion works the best to relieve the itch, headache, body aches and pains) but I have noticed my stanima is improving!

How are the other patients on valcyte doing? What month or week are you on? Any signs of improvement?

October 24th-31st

2007-11-01T01:24:00.000-07:00

Here is my update of the past week:

I am drawing a complete blank when I try to think of last Thursday. Friday I went to my little brothers school and did his makeup for his Halloween costume parade. His class sang some really cute pumpkin songs. Little children always brighten my day! I came home from that and got myself ready to go to a Halloween party. I did too much and didn't go. It's so hard not to push myself when I have a good day!

I came down with a cold and slept pretty much all day Saturday, Sunday, and Monday. I bet I got sick from those elementary school kids! Tuesday was a good day. I went and browsed around with some friends at a Halloween festival. I am definitely able to be on my feet longer compared to 1-2 months ago! Halloween was fun. I did my brother's makeup again. He was Darth Maul. I had no clue who that even was! I begged him to be Prince Charming and I could be Cinderella, but he didn't go for that! I watched some really funny horror movies from the 50's. One was called "Frankenstein goes to Outer Space". In my family we have a tradition of watching "Night of the Living Dead"; did you know there is an unedited version?

I've been very itchy these past few days. I have found icy hot and some benedryl to be more helpful than anything else. Taking a bath or showering makes this worse because it dries out your skin! Even a baking soda bath made me itch more. Those terrible headaches have subsided for the past few days. I just started a pain med called Ultram.

What are you guys on valcyte doing so you don't get sick all the time? I am taking colostrum which my doctor said would be good because it builds up my antibodies. In the past two weeks I've had a stomach flu and now I have a cold. I've read that some people on this drug avoid going out altogether. Someone has also stated that Dr. Montoya recommends avoiding public places especially in the cold season. I don't think I can handle being a hermit; I'm an extrovert. I don't drink, but I can completely see why people do, so going out whether it's a beautiful boutique shop, or to a delicious restaurant, movie, etc.. is my way of forgetting about my problems. I use antibacterial gel and trying to wash my hands a lot. Any other suggestions?

I've heard that some people use some pretty cool ways to get rid of the toxins in their body from the valcyte. Let me know what you are doing! I talked to a lady at the health food store and she suggested drinking a half a squeezed lemon a day. Lemons have a lot of vitamin C and they lower acidity in the body. Apple cider vinegar baths (I've talked about this one before), eating lots of fiber to make sure one is "going" 2-3 times a day. She said to eat apples and celery. Oh she also mentioned some sort of clay that starts with a B that you drink.

I know improvement is gradual with this condition. I am starting to see some and I'm so glad, even though it may seem small to others. I hope all of you on valcyte are doing okay! Oh and check out the article of the week from prohealth

Week 18

2007-10-22T05:51:00.000-07:00

Thought of the Day
"WE CANNOT DIRECT THE WIND, BUT WE CAN ADJUST THE SAILS".

THANKYOU, THANKYOU, THANKYOU, for all the positive encouragement both on this blog and from individual emails!! I so appreciate it. Each day is a little easier with good people who encourage!

Today was my appointment with Dr. Lucinda Bateman. She has a gift for helping her patients have hope and see the bright and positive side of things. When I told her about the recent setback I have had and she questioned me thoroughly on all my symptoms etc.. Somehow it led to her asking me how often I play the piano. I told her that just Sunday I sat down and played and sang for a good hour. Last time I saw her, I was lucky to spend 5 - 10 minutes playing. She reminded me that when our energy increases we push ourselves to the max and then our symptoms increase, so the aches and pains aren't really a measure of how we are doing. It is the increase in activity and stamina ( such as progressing from 5 minutes of piano playing to 60 minutes of piano playing) that counts. So she gave me hope in midst of headaches and jaw pain and lots of sleepiness!!! I am improving!!!

Several people in my family have had a virus which makes them very tired and lethargic. I am wondering if I might have picked up the virus and that is why I have been extra tired lately.?? Four months on Valcyte might not be enough to have any dramatic changes, at least for me. Several Valcyte patients have mentioned (hearsay) that Montoya may recommend being on Valcyte longer than 6 months. Right now it is all still experimental. My doctor feels that because Valcyte has no hard data yet, we are just going along hoping for a miracle! I am getting my titers retested to see what they are doing. I also have a new pain med to help me through the extreme pain that Tylenol doesn't cut.

I received a great article about a doctor who was at first skeptical about antivirals, but after trying them has had great success.

More Herxing

2007-10-10T21:33:00.000-07:00

"ALWAYS LAUGH WHEN YOU CAN, IT IS CHEAPER THAN MEDICINE."

My mom is writing this update for me because I have been in zombie mode lately. A couple of weeks ago I definitely noticed an increase in my energy, less pain, and fewer symptoms. This lasted until Sunday night when I felt a severe headache coming on. Since Sunday evening I have felt like I have a drop-dead case of the flu, with many symptoms (extremely tender scalp, migraine-like headache, jaw pain, overall body-aches, itching, and extreme fatigue). I have been pretty much bed-ridden the last 3 days. The good news is I have been so tired that I sleep up to 18 hours a day, so I only deal with the pain when I am awake, and the meds I take help take the edge off.

I haven't exerted myself to the extreme, which would normally explain an increase in symptoms. I thought the worst of my herxing was over with but apparently not. For those of you who are wondering what "herxing" means, Wikopeida gives a good definition: "The Herxheimer reaction (also known as Jarisch-Herxheimer or herx) occurs when large quantities of toxins are released into the body as bacteria die, due to antibiotic treatment." In my case the toxins released into my body are from the Hhv6 and Ebv viruses and my drug is an antiviral, rather than an antibiotic. I get some comfort thinking about the many viruses that have met their death this week!!!

I am only at 4 months on the drug Valcyte, and most people stay on it for at least 6 months. Dr. Montoya is suggesting that some might need to stay on 9 or more months to kill all the viruses. One Valcyte patient just reported major improvement only after dealing with bad herxing for 7 months! I must still be in the midst of major herxing.

Thought of the Day

2007-10-05T05:48:00.000-07:00

To laugh often and much;
To win the respect of intelligent people and the affection of children;
To earn the appreciation of honest critics and endure the betrayal of false friends;
To appreciate beauty, to find the best in others;
To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition;
To know even one life has breathed easier because you have lived.
This is to have succeeded.

-Ralph Waldo Emerson

In addition to yesterday's post...

2007-10-03T09:19:00.000-07:00

I get CFS articles from immunepro.com sent to me weekly. The article this week I thought would be beneficial to not only CFS/fibromyalgia people but anyone who hates getting colds. Some other supplements I have found to be good for fighting infection are olive leaf extract, echinacea, garlic, and zinc.

For the valcyte patients: I wanted to say again how much better I think I'm doing. I feel like I'm over the nasty viral, valcyte hump and hopefully will continue to descend down the hill. I'm still going to take it easy! I don't want to relapse. I forgot to add a very odd symptom in my post yesterday: Chest pain. I thought maybe it was bronchitis because I had a nasty cough, but I took some Colloidal silver and the cough is gone. My chest hurts the worst when I laugh, just breathing deeply, or give someone a hug. Does anyone else have this symptom?

=

C'est La Vie

2007-10-02T21:02:00.000-07:00

Reader Beware: For normal people this might be a bit much along with the other blogs I have written. I'm not trying to be a hypochondriac but I know the valcyte patients like to know all the details of every ache and pain and what month/week you are on. It's our life and we like to compare notes.

Pain: It's getting so, so, much better. I have morning stiffness and achiness, but a hot bath and some moving around helps it go away. I went for quite a few days without a headache! Today I felt a headache coming on but I got rid of it in time with a mi grain pill. I still use the lavender oil, but if you use it make sure to wash your face immediately after. I have been getting some nasty pimples (it may be the oil or may be a side effect of medication). I think I've mentioned this before but my head/scalp continues to be very sensitive.

Fatigue: My energy is improving. I am making sure to not push myself. I've learned from 7 years of CFS that if I'm on my feet too long I get tired and "pay for it". My doctor has a great saying : "CFS patients have a dime to spend on energy where as most people have a dollar's worth. Spend your dime wisely." I've been sleeping for 12 hours or more a day. I think it's helping me feel better. I went to three hours of church on Sunday, a first since I started valcyte.

Sleep: I have had a hard time getting to sleep a couple of times a week for the past month I'd say. I use the following to help me get to sleep: Ambien, but not every night or it stops helping, melatonin, kava kava or chamomile tea, or a whole Xanax pill, again not every night. Today I talked to some valcyte patients who complained of insomnia and they are on month 3 or 4. I thought this was interesting.

Mood: This month has been the hardest emotionally. I have to keep remembering that my value as a person is not based on typical accomplishments. Going to school you have to work hard and having a job gives you a sense of worth. Your hard work is rewarded through good grades, money, and approval from others. Been there, done that, and miss that! There isn't any type of physical award or social praise when you work ten times harder physically and emotionally than normal just to get through the day being on this drug. It's like being a mother of infant children; There's no trophy at the end of the day. My Aunt Tracy inspires me. She spent 18 years on kidney dialysis and wasn't a "typical" person. She has been a huge influence on my life, especially now! If she can do hard things so can I!

Stomach: I've had some stomach pain this last week. I guess I can't pretend like I'm in Italy while I eat gelato for a while. I have been getting hypoglycemia the last few days. I don't know if this is valcyte related or if I just need to watch the sugars.

Good stuff: I have been watching some good Alfred Hitchcock movies. I have great piano students who practice and are talented! I went to a new Italian restaurant that was yummy. This the best news ever: A See's Candy opened up near my house and I'd love a box for Christmas or better yet for Halloween instead of all of those tootsie rolls and smarties.

2007-09-25T18:22:00.000-07:00

I've been on valcyte for 3 and half months. My pain is decreasing. I don't deal with it daily like I have previously, which makes my life so much better! I have been getting chest pain accompanied by a bad cough, but it's not ruining my sleep or terribly uncomfortable. I really notice it when I laugh or when I'm singing because I have to take in deep breaths. I'm not sure if this is a valcyte thing or if I have bronchitis. I don't a stuffy noise though. My back pain is so much better! I have a long neck and I tend to stick it like a dinosaur, so I decided to become more aware of it and balance it my head like I use to when I was told a million times every day in my voice classes and lessons. I think having my body in proper alignment has helped the back pain. Here is the thought process I go through when thinking good posture: Head balanced over shoulders and tall (I think of a string being pulled up from the back of my head), shoulders back, chest lifted, and tuck that tushy under. Standing up against a flat wall with shoulder blades/head/bum touching the wall helps you get a feel for what the posture should feel like. My voice teacher at college taught me this and last year when I went to a physical therapist he had me do the same thing and hold the position for 5 minutes, 3 times a day as a back strengthening exercise. This simple thing has helped my back just to have good posture so give it a shot. I also have a hip misalignment (one shoulder higher than the other, one arm longer than the other, etc...) and wearing a heel lift in one shoe (the shorter leg) helps with my back pain and aids in obtaining correct posture.

I have muscle weakness which I've read that other people on valcyte have. My hands hurt from things an old person with arthritis would complain of. It hurts my hands and arms to blow dry my hair with a brush, taking the lid off a jar. But it's easy to avoid this, I just make my family do everything for me. I still play the piano though because that gives me enjoyment, I just don't play for hours on end. This is really weird but when I first was diagnosed with fibromyalgia I went to go get some strange test done where I had this wire/needle sort of thing poked into different muscles in my body and then a machine would shock me. It was done by a neurologist. I have no idea what the name of the test was, but when I got the results back they said they couldn't find anything wrong with my muscles except for carpel tunnel in my hands. I had been playing the piano my whole life up to this point and never had complained of pain until one day I woke up and couldn't get out of bed; my whole body felt like I had been on the boy scout 50 miler. Has anyone else had the mysterious presence of carpel tunnel with their fibromyalgia?

I'm not out doing the 800 yard dash, but my energy has definitely improved. The first two months on valcyte I frequently had to reschedule my student's piano lessons because I felt so fluish, but I have not had to reschedule at all this month!

To be c0completely honest I was expecting miracles around month 3. Don't get me wrong I am so grateful to be on this drug and the hope it brings to my life. At the same time although I am improving I still don't feel like I'd like to. If I push myself I end up paying for it, so I'm really hesitant to do a whole lot. I just want to have the best recovery possible. I just keep thinking 2 and a half more months. I think because of this I have been experiencing anxiety which I find brings on insomnia for me sometimes. December 14th and I hope to be seeing some signifcant improvment.

So what do I do all day some ask? I sleep and rest a lot. I've been praciting the piano and singing. Sometimes I have people ask me what I've been playing so here it is: I'm relearning a Bartok piece called "bagpipes", a Chopin nocturne in f minor, and Mozart's Fantasy in D minor on the piano. I am learning a Faure art song "apres un reve" and have been looking at an aria from "The Abduction from the Seraglio" it's the one the maid sings, "Durch Zartlichkeit und Schmeicheln". Does anyone know how to do accents and umlauts on the computer?

The energy I have I feel like I am doing worthwhile things and nothing brings more joy to my life right now than being able to escape to the world of music. I made some really beautiful collages out of old sheet music from the 1800's and turn of the century. My grandma found boxes this music at a garage sale when she was on a mission in Vermont. So I put the music to some use. My friend is getting married so I am in the process of making bridal shower invitations. I enjoy scrap booking and crafts what can i say, I'm a true Utah Mormon! Pretty soon I'll be ratting my hair.

2007-09-15T00:06:00.000-07:00

My aunt sent me this great article about a study that has linked enterovirus (causes gastrointestinal problems) with Chronic Fatigue syndrome.

I also found some great articles that my doctor has written to help Patients and Doctors. They are very good. I know one big thing in her clinic is treating mood, sleep, and pain, she talks about this in one of the articles. If you can improve these three things your quality of life improves so much! I know that I have been dealing with at the present time and need to work on improving them. I'm up at 1:30 right now and that's not good (I have not been sleeping well due to pain and anxiety). Hope these are helpful.

Three months on Valcyte

2007-09-08T02:51:00.000-07:00

I've been on 3 months of valcyte. So my energy has been improving alot each week. I've been able to have some what of a social life. My evenings are particularly better and that's when I am able to do more. I've been having weird pain that has been making somedays unbearable. My Aunt suggested Goji Juice, so I have been looking into that. I want to make sure it doesn't interfere with the medication (some herbs/meds do that I have been taking). A lady at our local health food store who has fibromyalgia swears by Apple Cider Vinegar baths for pain. I tried it yesterday and it helped my legs so much! I added 1 1/3 cup to my bath and soaked for 20 minutes. It's important to drink plenty of fluids because it works up a sweat. Apparently the lactic acid build up is released through the skin through sweating. I continue to have lavender and peppermint with a carrier oil massaged on my face and head for jaw pain and headaches. I'm also on an anti seizure medication that helps with pain. I thought you just took it like Tylenol (pop one when you need it) but my Doctor told me yesterday that it's the sort of med that has to get in your system every day with a certain amount to take full effect, so that was nice to know. My brain fog is getting better. I'm reading a book right now and can read for long periods without feeling totally drained.

Today I didn't wake up until three in the afternoon and I had a terrible sinus headache. I went back to sleep an hour or two later and woke up at 8:30. I felt like someone had drugged me. I am hoping that I have a sinus infection and that is why I'm having an energy crisis today! I'm crossing my fingers that this is a passing thing and that I will continue to gain energy.

In memory of Lisa Varillas

2007-09-01T21:36:00.000-07:00

I hope that if anything good can come of this tragedy that it will help spread the word of the realness of Fibromyaglia and Chronic Fatigue. Our prayers are with her family!

http://www.sptimes.com/2007/08/28/Features/_Her_pain__his_ache.shtml

Some good articles

2007-08-27T15:24:00.000-07:00

The magazine, Healthy Utah, has some articles on CFS . I see this magazine all the time when I go to doctor's offices, so this is a great way to inform that medical world about CFS!

This article ,by Dr. Podell, answered a lot of my questions about using Valcyte for CFS.

www.immunesupport.com has tons of information on CFS and Fibromyalgia and they have a message board that I go on all the time. Their are many other people on valcyte that post on the board and we all support each other; it's great. I don't feel so frustrated that I am not able to do that much because they can't either! I particularly liked this article I found on their website. It's about why the name Chronic Fatigue Syndrome should be changed. Their are so many elements to this disease besides fatigue. This name would be the equivalent to calling diabetes "Chronic Peeing Syndrome"; Doesn't quite cover it all, right?

http://www.offerutah.org/ is a good source of information too. They link to some very informative CFS and Fibromyagia websites. They also recently linked to my blog on their site. If you go to their website and click on CFS and FMS news you'll see were they've linked my site. I thought that was pretty cool!

Update - it's been a while! Weeks 8-9

2007-08-21T15:50:00.000-07:00

Week 8 was very tough - in bed a lot. It was probably my hardest week yet. I felt awful -very achy all over and extreme fatigue. I got a massage this week but the girl was afraid to dig in and give me a serious massage after she found out I had CFIDS. This week just holding a magazine for a few minutes caused my hands to be racked with pain. Very weird. I had just a few good hours this week. One evening I slept all day and then went out to dinner and did alright. Another evening my mom talked me into going to music club. I wasn't feeling well, but thought that going might give me a boost. My mom put on my makeup, and fixed my hair so I would look presentable. I wasn't going to sing, but after alot of chiding by the good people there I did, and it was a good experience. The evening was upbeat and boosted my mood. Like Dr. Bateman said - "do the things you love." My symptoms seems to be on track for many of the Valcyte patients. Weeks 6-12 are said to be the toughest, and the time many start to improve.

Week nine -My fatigue started to lessen, and I was able to add a few more hours of activity on to each day. We had company and I was able to alternate resting with a short shopping trip, going to movies, etc. I started to wake up from sleeping without that death warmed over look I had the week before, which was noticeable to both me and my family. The big question pending was "Should I go on our family vacation or stay home and rest"? At the last minute I decided to go, and it may or may not have been the right decision, but I did it. We went to Grand Teton National Park and West Yellowstone. We got rained on but had a great time! Here is a picture of me near Jenny's Lake at Hidden Falls. Hidden Falls was a short hike and I rested about every couple of minutes. I took me 3 times a long to get to my destination then the others, but I did it. I just hope I didn't overdo it! We got stuck in a thunder storm and had to wait it out for over an hour (in the rain). We had taken a boat over to hike the trail, and had to wait for the thunder storm to end before we could take the boat back. I've been home for 2 days and have been taking it very easy. I am definitely better than I was in week 8, but also feeling some symptoms, (jaw pain, some headache, and a little dizzy). I hope to report more progress as time goes on. Best to all - Desi

Information on my doctor and my titers

2007-08-08T10:07:00.000-07:00

Some people were wondering about my doctor, her protocol, etc. Here is some information:

My doctor has a chronic fatigue/fibromyalgia clinic in Salt Lake City. She changed her focus from internal medicine to CFIDS after her sister battled with cfids. Her sister died in 2001 from cancer which was most likely brought on by CFIDS. The CFIDS Association of America did a spotlight on Dr. Bateman. http://www.cfids.org/about/bateman.asp

She is a one of a kind doctor and I am blessed to be one of her patients. I was on a waiting list for 6 months and was finally able to be one of her patients. It was so worth the wait. Because it is hard to get in to Dr. Bateman she is more than willing talk to patient's doctors to help them diagnose and treat people with CFIDS. Dr. Bateman attended the conference in Florida where Dr. Montoya presented his study. She has 4 or 5 patients on Valcyte. While she is excited about it, she also maintains a wait and see attitude, as Valcyte is still in the experimental phase. My dosage of Valcyte is 900 mg daily from the beginning ( different than the Montoya protocol). My titers were not done by Focus labs, and the scale is different. I am not a doctor obviously and do not know exactly what these tests all mean; some of them are for EBV, but are different tests for the virus. Not quite sure why. I do know that when I went into my doctor to decide if I should go on valcyte she said that my HHV-6 test was the highest she had seen in her office. Here they are:

EBV Nuclear IgG - 3.279 (My test result)

Scale:
0.90 or less Negative,
0.91-1.09 Questionable
1.10 or greater Positive

Human Herpes Virus 6 Ab IgG (hhv-6) - 4.68 (My test result)

Scale:
0.89 or less negative
.90- 1.10 questionable
1.11 or greater positive

EBV ANTI-VCA IgG - 3.796 (My test result)

Scale:
0.90 Negative
.90-1.09 questionable
1.10 Positive

EBV Ab EA Early Antigen - 1.01 Hf (my test result)

Scale:

0.00-0.99
1.00 or greater....Positive, which may indicate a current or past EBV infection

CMV IgG- .025 (my test result)

Scale:

.90 or less negative
.91-1.09 questionable
1.10 Positive

Valcyte week 7 update

2007-08-03T19:08:00.000-07:00

I had a doctor's appointment on Tuesday with Dr. Bateman. It was just what I needed after having a rough couple of days because Dr. Bateman is always understanding and encouraging. Some words of advice that she gave me were not to give up the things I love to do, even though I may not be able to do them the way I use to. For example, maybe I can't practice my music 2 hours a day , but I can sit down and sing or play the piano for 10 minutes and that is good enough! She also told me to fill my life with good things: beautiful music, and a good laugh every day, etc. I watched "Happy Gilmore" last night, and the "Office" a day or two ago and got my chuckles in!

On the more technical side of things, my symptoms have been getting more intense (more pain in more areas, ie.. chest, arms and back, in addition to my legs, feet, and head, and more fatigue). It has been 7 weeks of flu-like symptoms, from mild to extreme. Dr. Bateman, really reiterated the fact that I had a choice in staying on Valcyte. She was concerned about whether or not it was too much for me. She just had a patient go off Valcyte for this very reason. I guess the patient had a family to care for and it was just too much right now to be sick all the time and try to care for her family. But after I told her I was sticking with it, she said that she was glad, as she would like to see me be on it at the very least for 3 months. From what I have read from Dr. Montoyas first study, week 6-12 is where things usually start to happen ( you get worse and then hopefully began to get better). I am blessed right now to have a family to help me and circumstances that allow me to get sick and be taken care of. My heart goes out to those people who have jobs or families to care for while on Valcyte. Not easy at all!

The appointment with Dr. Bateman renewed my resolve and her suggestions on surrounding myself with good things has already helped me. I'm hanging in there! Hope all is going well with my fellow Valcyters - Desi

Week 6

2007-07-28T11:44:00.000-07:00

I'm just starting week 6 of valcyte and I'm excited. I've heard that some people start feeling a lot better somewhere between weeks 6-12. Fall semester starts in one month and I was hoping to be able to take a class or two, so we will see what happens!

I do have to say that someone has been leaving certain comments that I find very hurtful. I just would like to say if someone had cancer would you tell them it was all in their head? They would need all the support they could get going through Chemo. I need support and love too! I think whoever wrote this is going to feel really sheepish when more research and discoveries are made throughout the years about Fibromyalgia and Cfids . As for the person who wrote this I just want to ask you, Do you want a blood transfusion from me?

As for symptoms so all you other valcyters can compare, I've had very low energy this week. There was a sale on shoes at the mall and I really wanted a pair so I drank tons of caffeinated beverages to make the trip. (a little voice seem to keep telling me, "Your going to regret it). I took my little brother with me and he really wanted to go on the Merry Go Round, so we walked across the mall to it. I had to keep taking breaks and sit down. SO I was pretty much bed ridden the next day, but I got some really cute shoes and my little brother got have the ride of his life!

Last Friday my legs and jaw muscles hurt badly. I couldn't sleep the night before because of the pain. I was in tears from lack of sleep and pain. My dad took me to the doctor (I couldn't get in to my usual Dr. so I had to go to a G.P.) . He gave me some Tylenol with codeine and muscles relaxers and these helped so much! I could actually sleep.

I don't want to get dependent on this medication, so I try to just take half and only every other day. It has helped so much. If you have any questions feel free to ask me. Good luck with all your recoveries!

Valcyte and Chronic Fatigue Syndrome

2007-07-25T21:14:00.000-07:00

Here are some websites that I have found to be helpful in figuring out what the heck this virus is that I had the highest antibodies for (HHV-6) and information on valcyte and Dr. Montoya's studies on it.

http://www.hhv-6foundation.org/hhv6cfs.html

http://www.vicd.info/

http://www.immunesupport.com/library/showarticle.cfm/id/7636/searchtext/montoya%20cfs/

Check out this article from the New York Times

2007-07-23T13:03:00.000-07:00

Chronic Fatigue No Longer Seen as ‘Yuppie Flu’
By DAVID TULLER
Published: July 17, 2007

For decades, people suffering from chronic fatigue syndrome have struggled to convince doctors, employers, friends and even family members that they were not imagining their debilitating symptoms. Skeptics called the illness “yuppie flu” and “shirker syndrome.”

But the syndrome is now finally gaining some official respect. The Centers for Disease Control and Prevention, which in 1999 acknowledged that it had diverted millions of dollars allocated by Congress for chronic fatigue syndrome research to other programs, has released studies that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes. The centers have also sponsored a $6 million public awareness campaign about the illness. And last month, the C.D.C. released survey data suggesting that the prevalence of the syndrome is far higher than previously thought, although these findings have stirred controversy among patients and scientists. Some scientists and many patients remain highly critical of the C.D.C.’s record on chronic fatigue syndrome, or C.F.S. But nearly everyone now agrees that the syndrome is real.

“People with C.F.S. are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease,” said Dr. William Reeves, the lead expert on the illness at the C.D.C., who helped expose the centers’ misuse of chronic fatigue financing.
Chronic fatigue syndrome was first identified as a distinct entity in the 1980s. (A virtually identical illness had been identified in Britain three decades earlier and called myalgic encephalomyelitis.) The illness causes overwhelming fatigue, sleep disorders and other severe symptoms and afflicts more women than men. No consistent biomarkers have been identified and no treatments have been approved for addressing the underlying causes, although some medications provide symptomatic relief.

Patients say the word “fatigue” does not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a physical therapist and former professional figure skater, said the profound exhaustion was unlike anything she had ever experienced.

“I slept for 12 to 14 hours a day but still felt sleep-deprived,” said Ms. Flowers, 51, who fell ill several years ago after a bout of mononucleosis. “I had what we call ‘brain fog.’ I couldn’t think straight, and I could barely read. I couldn’t get the energy to go out of the door. I thought I was doomed. I wanted to die.”

Studies have shown that people with the syndrome experience abnormalities in the central and autonomic nervous systems, the immune system, cognitive functions, the stress response pathways and other major biological functions. Researchers believe the illness will ultimately prove to have multiple causes, including genetic predisposition and exposure to microbial agents, toxins and other physical and emotional traumas. Studies have linked the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q fever, Ross River virus, parvovirus, mononucleosis and other infectious diseases.

“It’s unlikely that this big cluster of people who fit the symptoms all have the same triggers,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, the advocacy group in charge of the C.D.C.-sponsored awareness campaign. “You’re looking not just at apples and oranges but pineapples, hot dogs and skateboards, too.”

Under the most widely used case definition, a diagnosis of chronic fatigue syndrome requires six months of unexplained fatigue as well as four of eight other persistent symptoms: impaired memory and concentration, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed sleeping patterns and post-exercise malaise.
The broadness of the definition has led to varying estimates of the syndrome’s prevalence. Based on previous surveys, the C.D.C. has estimated that more than a million Americans have the illness.

Last month, however, the disease control centers reported that a randomized telephone survey in Georgia, using a less restrictive methodology to identify cases, found that about 1 in 40 adults ages 18 to 59 met the diagnostic criteria — an estimate 6 to 10 times higher than previously reported rates. However, many patients and researchers fear that the expanded prevalence rate could complicate the search for consistent findings across patient cohorts. These critics say the new figures are greatly inflated and include many people who are likely to be suffering not from chronic fatigue syndrome but from psychiatric illnesses.

“There are many, many conditions that are psychological in nature that share symptoms with this illness but do not share much of the underlying biology,” said John Herd, 55, a former medical illustrator and a C.F.S. patient for two decades.
Researchers and patient advocates have faulted other aspects of the C.D.C.’s research. Dr. Jonathan Kerr, a microbiologist and chronic fatigue expert at St. George’s University of London, said the C.D.C.’s gene expression findings last year were “rather meaningless” because they were not confirmed through more advanced laboratory techniques. Kristin Loomis, executive director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus that has been linked to C.F.S., said studying subsets of patients with similar profiles was more likely to generate useful findings than Dr. Reeves’s population-based approach.
Dr. Reeves responded that understanding of the disease and of some newer research technologies is still in its infancy, so methodological disagreements were to be expected. He defended the population-based approach as necessary for obtaining a broad picture and replicable results. “To me, this is the usual scientific dialogue,” he said.
Dr. Jose G. Montoya, a Stanford infectious disease specialist pursuing the kind of research favored by Ms. Loomis, caused a buzz last December when he reported remarkable improvement in 9 out of 12 patients given a powerful antiviral medication, valganciclovir. Dr. Montoya has just begun a randomized controlled trial of the drug, which is approved for other uses.

Dr. Montoya said some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood. Ms. Flowers, the former figure skater, had high levels of antibodies to both viruses and was one of Dr. Montoya’s initial C.F.S. patients.
Six months after starting treatment, Ms. Flowers said, she was able to go snowboarding and take yoga and ballet classes. “Now I pace myself, but I’m probably 75 percent of normal,” she said.

Many patients point to another problem with chronic fatigue syndrome: the name itself, which they say trivializes their condition and has discouraged researchers, drug companies and government agencies from taking it seriously. Many patients prefer the older British term, myalgic encephalomyelitis, which means “muscle pain with inflammation of the brain and spinal chord,” or a more generic term, myalgic encephalopathy.
“You can change people’s attributions of the seriousness of the illness if you have a more medical-sounding name,” said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.
Correction: July 20, 2007

An article in Science Times on Tuesday about new research and financing for chronic fatigue syndrome misstated the given name of an infectious disease specialist at Stanford University who is studying the effects of an antiviral medication in people who have the condition. He is Jose Montoya, not Joseph.

Dr. appointment and update

2007-07-18T12:32:00.000-07:00

I had a doctor's appointment with the P.A. on Monday. I told her about some of the symptoms I was having, (fatigue, headache, rash, brain fog, swollen glands). She was eager for any information because this drug has hardly been used for chronic fatigue at this office before. I think I am the 4th or 5th person to start it, so the staff is interested in every detail. I told her about chat group I belong to, with alot of Dr. Montoya's patients who are on Valcyte. She took down the web address and sounded eager to read the blogs about Valcyte. Dr. Montoya is the pioneer who started all of this, so it is awesome to be able to talk to his patients and learn what he has to say about their treatment on valcyte.

Today I am a zombie. Infact, my mom is writing this for me while I am comatose on the couch. I woke up feeling slightly fluish which is normal, then an hour later I went from bad to worse. Now I have a terrible headache, nausea, aches all over my body, and more fatigue. This is all good in theory, because it means there is a battle going on in my body with my immune system and valcyte on one side, and the Hhv6 and Ebv virusus on the other side. The sickness I feel is hopefully from what they call "herxing" or viral die off. I sure hope It is herxing and not the flu. I read from another valcyte patient of Dr. Montoyas that valcyte forces the viruses out from their hiding places (in the brain tissue and in the cells, and body organs) out into the open where my immune system can then fight them. The theory is that because these particular viruses are not present in the blood stream, (they hide) they cannot be found by my natural immune system, but the drug Valcyte forces them out, causing them to be activated, (thus the cruddy feeling) and then my immune system can knock em out! Go Valcyte!!!

To read interesting blogs on valcyte go to immunesupport.com and then click on message board. Do a search for valcyte and learn about the handful of patients nationwide that are on this experimental drug. You may have to log in and create a username and password.

Thanks all !

July 9th, week 4

2007-07-09T16:48:00.000-07:00

My right gland is getting more swollen every day and it is painful. We will see if it goes down. I was able to go take a final for history and after that I went out to lunch. I'm pretty tired now from my big day out! But I'm glad I was able to get the energy up to go do that :)

7/5/07 WEEK THREE ON VALCYTE

2007-07-07T07:44:00.000-07:00

2007-07-05 17:49:07
Week Three of valctye

I've been on valctye for exactly three weeks now!
Exciting. This week has been a butt kicker. I've been
very tired. Sunday I didn't go to church. It's difficult
because my singles ward starts at the same time as my
family's ward. I would like to go to just sacrament, but
everyone is gone and I needed help getting ready. On
Tuesday I woke up for a doctor's appointment at 8:30 and
it was painful just to open my eyes. I came home and
slept from 11 till 5. Yesterday I was better. I was able
to go to a movie (kind of slept through it though!) and
relax at the pool. I have a rash on my arm and legs,
which apparently is a sign of viral die off. My cognitive
function has declined. I am studying to take a test for
an online course I started before valcyte and I'm telling
you studying has never been so difficult.

In general I would say week three has put me at the function level of 30-40% of a normal person.

6/23/07 END OF WEEK ONE ON VALCYTE

2007-07-07T07:42:00.000-07:00

End of Week One

Yesterday and today I have been feeling flu-ish. Very
lethargic with body aches. I've been trying to do some
homework but it's difficult to concentrate because my head
is foggy

June, 19, 2007 - DAY 6 ON VALCYTE

2007-07-07T07:40:00.000-07:00

(I am copying a few posts from my old journal to this new blog, thus the dates won't match up for the first few posts!)

2007-06-19 17:43:54

I'm on my sixth day of being on valcyte. I started developing swollen lymph nodes on Saturday. I've been told that this is a sign that there is a virus in my body trying to fight. I had some chest pain on Saturday as well. I have some body aches, but I had those before I started the drug. My fatigue is about the same as it's been for the last couple of weeks. Yesterday I was able to go on a short walk without "paying back". I'm excited to see what happens!