Valcyte is certainly a consideration for people who have severe Chronic Fatigue Syndrome. I certainly support anyone who chooses any route which works for them, but I'll be honest and say that I have concerns about Valcyte.
My concerns are this: an estimated two-thirds of CFS patients have bacterial infections. If you take an antiviral drug, that will suppress the immune system...
Dr. Jose Montoya at Stanford University had a successful outcome for his first research trial using Valcyte. I believe the results of his second study are still pending.
Lastly, two-thirds of CFIDS patients have bacterial infections. Another thing to think about is if you are one of these people who have L-form bacteria, then it probably wouldn't be a good idea to take antivirals. Testing for this sub species (and others) mycoplasma is not easy and insurance may not cover the expense.
My physician has me addressing the bacterial issues (mycoplasmas, etc) that is the underlying cause of my illness (my opinion along with some other physicians) and is waiting for the results from the next Valcyte trial. Since I am making progress on my current treatment, I may decide to stick with it, although it takes years.
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 0.1-1.1)
EBV Early Ag IgG - 40 (no range was listed on either of these)
EBV Anti VCA IgG - 640
The mono screen was negative as was the EBV Anti VCA IgM
It all began with "flu" symptoms almost 7 years ago.
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.
I had chemo for Hep C and got FM. I don't think there are any Chemo's out there for fibromyalgia. The only thing that is supposed to be the FM drug is Lyrica. It works for me. I have been off chemo for a year and have terrible flares of FM, but the Lyrica does help a lot!
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...
I've been seeing a retina group here in SC since March. My right eye was becoming blurry, and my mono-vision contacts didn't work well for me any more. They examined me and did many tests, including dye, and found 'something' that looked like a virus in that eye. They found inflammation, and talked about surgery to remove
fluid and debris from that eye and examine it to find out what's wrong. I opted for copious bloodwork and they found many cmv anti-bodies in my blood.
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.
That is a good video. It is nice that the doctor is making more people aware that CFS isn't ordinary tiredness.
I do have a question for you about the sore throat associated with CFS. Is it viral or allergy in nature?
I ask because I was finally diagnosed with FMS, but I also have MCS, so I have a lot of allergies. I often have a sore throat that seems to be associated with the allergies.
I felt like it was taking a long time to get over my jet lag. I was exhausted for a week or two and it never really got much better. I have felt tired, regardless of how much sleep I get since then. In December 2016 I went to an internal medicine doctor to have some blood tests done to figure out what was wrong. They came back positive for Cytomegalovirus (results attached - IgG level at 5.5). The doctor told me there wasn't much I could do and to check back with him in a month.
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.
Proctitis is not a STD symptom.
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.
It sounds like you have EBV virus induced CFS. EBV is notorious for causing peripheral neuropathy and autonomic system disorder which are the symptoms you describe. I had all this tested at a special neurodiagnostic lab and that's what I have. It sounds like you're taking all the right meds. There's also these stocking you can wear. google peripheral neuropathy treatments. Also check out a dr who'll treat your ebv/cfs with anti virals such as valacyclovir or valcyte.
His penis may have also brushed against my genitalia briefly we did not have sexual intercourse and he was not totally undressed in that area, had boxers on. What is the possible outcomes from this for him? I have read that HSV2 rarely transmitts through oral sex, and I am wondering if the genitalia has to come into direct contact with the lesion area?
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?
this was november of 08..then I started to have burning in my penis... so I went and got test for herpes in jan of 09...my test came back negative..1.9 or something cnt remeber the exact number...but before I got my resluts back..I was taking some meds that begin with an a..
The meds didn't wrk for the feelings on the inside...so arond march...I noticed I had a sore...I'm thinking I tested negative so this is not herpes...so I didn't kno wht to do...
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