We are working very hard to confirm our initial success with this treatment in our current randomized, double-blind placebo-controlled study and hope to publish our results in 2008. Please visit our study website at www.vicd.info as well as http://clinicaltrials.gov/ct/show/NCT00478465 for more information.
Sincerely,
Jose G.
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. Treatment on this medication is only about 6 months.
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.
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.
That is the frustrating part. There is no standard treatment for Chronic Fatigue Syndrome. The only two treatments that I am aware of that has apparently cured some CFS patients would be the antibiotic protocols (I listed some of them in the health pages) and Valcyte, a very powerful anti-viral drug. The co-founder of PetsMart was on the original study and he is now jogging again. He said he had CFS after a flu-like illness and I believe he was disabled when he participated in the study.
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.
so i began to take antibiotics for 3 years and nothing changed. I began to feel more creepy.. could not study .. nothing.. went downhill.
Finally 2 years ago i was testet in a lab which is specialized in detecting immune defects... everything was fine here too, they made a lyme blot too and everyrhing was negative, onle the lyme antibodies IgG were slightly positive. So i guess lyme never played a big role in my symptoms.
I was wondering if SSRI can have an impact on the antibody tests and cause a false negative. For example I saw a study that HIV viral replication can be reduced by SSRIs. Also read a study that MAOI can prevent/reduce HSV viral replication due to something involving the LSD-1 (http://insciences.org/article.php?article_id=7314).
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?
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.
We declined, which is a good thing now because I have a surrogate that is pregnant with twins and they are due in Feb of 2009. I have been thinking about trying the valcyte. The only problem with me and valcyte is that I have chronic low white blood cell counts. Mine are always in the 3.2-4.5 range. I have had a bone marrow biopsy and some other tests to rule out any kind of blood cancer.
Why do that when we have Valcyte (also a little bit frightening, but probably not as bad as the chemotherapy treatment) ?
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).
Thyroid hormone levels have a very big impact on the health and development of a fetus. A mother's low thyroid hormone levels can negatively impact a child's brain development. See this study for more info on that:
http://www.ncbi.nlm.nih.gov/pubmed/24015847
We need more information about your situation to be able to help. Is 3.88 your TSH? or Free T4 level?
The most relevant tests to request from your doctor are Free T3, Free T4, and TSH.
I'm guessing you mean a Crystalens IOL implanted after cataract surgery. The choice of IOL shouldn't impact the risk of retinal detachment. Having the Cryalens shouldn't impact treatment methods, they should be the same as if you had a monofocal IOL (since the Crystlens has a single focus, even if that focus might perhaps be able to shift) or still had your natural lens.
Unfortunately cataract surgery does increase the risk of retinal detachment, even a number of years later.
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.
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.
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