Someone posted on another board that they had antiviral chemotherapy and after, their fibromyalgia was gone. Has anyone heard of this before? I don't even know what this is...a pill type chemo?
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.
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.
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.
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.
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 is it that insurance companies don't understand fibromyalgia? I paid in Short Term/Long Term disability insurance at work. But after a 10 month wait while they evaluated my condition, they refused to pay me stating that Fibromyalgia was not a disability. If they ever actually had Fibro maybe they would understand. I don't know where to go from here.
I do plan on adding Ampligen to the list of CFS treatments. I also need to add that Valcyte trial. But of course... some of these treatments for CFS are risky. I want to include my personal thoughts on that as well (and anyone elses).
Antivirals suppress the immune system and as jason said, "keep the bugs at bay". 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.
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 son is 16 and was diagnosed with mono February of 2012. He has had neurological difficulties and a steady cognitive decline. His HHV-6 IgG was 1:1280 and his DNAse B antibody was 448. His doctor wants him to start Valcyte. Does anyone have any thoughts on this.I'm not sure how this will effect him while going to school.
She said it sounded like I had fibromyalgia. She then said that fibro was triggered by stress. What?
I have CLL and was just dx with Papillary Thyoird Cancer-one cm nodule on isthmus dx by FNA. I also have several small nodule on the right lobe and lumpy lymph node on my right neck. I have had extreme fatigue prior to the thyroid dx. I'm schedule for a total thyroidectomy and select lymph node removal next week. Doc says no thyroid replacement therapy for thirty days post-op pending scan for metasteses. I worried about the thirty days. Any idea on what I can expect?
i have fibromyalgia amongst other complaints.fro about 2 years i have had a swollen abdomen-lumpy and tender which progressed to sore and protruding ribs.have had ct and mri scans which gave no clues.doctors seem to ignore symptons,now i have a feeling of tightness around my ribs and am sore all around them.it feels like ribs are digging in me.
I have fibromyalgia and so does my mother. From what I have learned it can stay the way it is now for the rest of your life or it can get worse. Try to stay on a daily routine sleep when your tired and don't overdue yourself, the best you can do is take good care of yourself hoping to help it not get worse. Very true, as bad as it gets for you.
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