Ihave Cfs, multiple allergies, psoriasis. Caught chicken pox "mutation" (!?!) although already had it as child and nursed 2 teenage daughters through very bad bout some years ago. Granchildren had it recently, My psoriasis went mad, infected legs looked as though they'd been blown up and burnt. Fever, very sick, mad itching. Antibiotics and steroids, gradually better. V. bad CFS symptoms, could not get out of bed for 3 weeks. No energy to talk.
I just joined this forum and have a question regarding my EBV tests and Valcyte. My doctor wants me to start Valcyte for my elevated HHV6 and EBV antibody levels. I will post them and if anyone here has any thoughts on them I would very much appreciate it. I know this isn't an HHV6 forum but I will post the test results as well.
HHV6 Ab IgG 21.44 (range 0.1-1.
I read online a post from a lady who claimed that she was on one of the Valcyte studies and she became even sicker after the treatment. I know that one CFS expert was recommending Valcyte only for people who were disabled. I am interested in reading more about Montoya's second trial.... but I really do have concerns about these people relapsing. These antiviral drugs suppress the immune system.
sources:
http://www.immed.org (click on fatigue illness)
http://www.medicinenet.
s (Stanford University) Valcyte trial. Fortunately... he was one of the lucky ones. The first Valcyte trial was a success, but I've heard (without seeing the results) that the second trial wasn't. One woman claimed on the internet that she became worse after taking Valcyte. Of course Valcyte is a nasty drug and this trial and many physicians won't prescribe it unless you are disabled.
Hi ! You've had CFS a very long time, like me. I am not familiar with any of the medications you are taking, as my specialist decided to prescribe a pathogen killing treatment for me instead. Here is a link to our Health Pages and I list various treatment plans, written by the fibro/CFS experts... some of them who have had (?) CFS or fibro themselves.
Have you tried antivirals and/or supplements ?
http://www.medhelp.org/health_pages/list?
There is one antiviral, Valcyte, that apparently is either curing or putting some CFS patients in remission... but the risks involved with Valcyte are too risky for me.
(about Valcyte: http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.shtml )
Knowing that the majority of CFS patients have mycoplasma (L-form bacteria) infections, I prefer the pathogen killing treatments over the antiviral treatments.
I think many fibromyalgia patients find this hard to believe... but of course CFS know we have an infection. This is due to research on CFS and also the fact that most of us became ill after having a viral illness. I know that EBV was the trigger that set-off my CFS symptoms.. without a doubt.
An estimated 60% of fibro patients have some CFS symptoms and vice versa. Of course as you know... we all share symptoms of lyme and autoimmune diseases !
It is working, although it takes years and can make you feel worse. But it is intended to cure CFS... just like the drug Valcyte. But Valcyte is an immunosuppresant and has some very toxic and possibly deadly side effects.
If you have any questions for Dr. N... zip them my way before 5 PM (Pacific Time) today. Send them via PM or note.
I am convinced this stems from the EBV when I had mono. I have been reading about CAEBV and CFS. My feeling is that the EBV has triggered CFS or it has lead to a persistent illness in my system.
I do not know where to go from here. I have been to my family doctor several times and he has ruled out other causes of fatigue (e.g. depression, testing thyroids), but I don't seem to be getting any solid answers.
(arg) Another thing you may want to consider is printing out information on fibromyaglia and CFS. I would hand it to them and walk away. If you google "Dr. Garth Nicholson" --- you will immediately see his website address (The Institute of Molecular Medicine). You can click on "fatigue illness research" and read about all of the mycoplasmas and viruses that are found in both CFS and FM patients. You might want to print that page...
CMV is the most common infection is post transplant patients which is why we recipients are prescribed Valcyte for a period of months after our transplants as part of the anti- fungal, anti-bacterial and anti-viral regime of meds along with out immunosuppressants.
In the vast majority of patients, CMV disease responds to treatment with intravenous Cytovene/ganciclovir.
This may answer your question :
We have yet another viral discovery linked to chronic fatigue syndrome (CFS or ME/CFS) - and it's a protein in a particular strain of human herpesvirus-6 (HHV-6), a virus long suspected of playing a role in many cases of ME/CFS.
While we have a dx of FMS or CFS, most individuals will have several overlapping conditions along with this dx. In order to give others an idea of what symptoms/disorders can tag along with these illnesses, I thought it would be good to share from our own experiences.
How many 'overlappers' do you have?
(Overlapping being things that are chronic such as IBS, RA, Lupus, MS, Lyme, Migraines, RLS, PLMD etc.
However after about a week and a half to two weeks the pain went away. I was started on Valcyte about 2-3 weeks after all this. I also had a blood vessel rupture in my eye towards the back making it almost impossible to see anything when I went to try and find out what was going on (Have been seen by three different optometry clinics). I Have also been using Predisonal 4-6 times a day and Cyclopentalate 2 times daily.
Why do that when we have Valcyte (also a little bit frightening, but probably not as bad as the chemotherapy treatment) ?
The other viruses showed latent infection controlled by the immune system. I was given Valcyte 450mg a day for 4 months.. after that 2x1000mg valtrex (valacyclovir).. my CMV titers fell down the half and i stopped the medicine.
Now im thinking.. that all the time, all my problems are caused by the ebv virus.. and i think im right because all other things.. like:
vitamins (also vit D, B12 .....)
Infections (really all kind of Infections.. babesia, bartonella, toxoplasmosis...
My CFS condition is getting worse and worse. I have been seen/treated by Neurologist, Psychiatrist Endocrinologist and others and I'm taking medications.Not helping. Basically they all gave up and just suggesting physical activity and socializing . In recent test ordered by my neurologist re mitochondria and found my lactic acid result: 2.8 ( which shows as high compared to normal 0.5-2.2. My neurologist explained that it has to do with irregular production of my ATP from glucose.
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