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.
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...
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.
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?
edu/health/medical/altmed/condition/mononucleosis
About two months later I am still not feeling any better at all. I got another blood test for CMV IGG antibodies and it came back positive at 2.9. I read that the higher the number the higher the viral load here but I am not feeling any better with a lower number
I have read that Valcyte (Valganiclovir) may help but it seems to be primarily for patients with an otherwise compromised immune system, which I don't believe I have.
It made me feel like crap, but if you tolerate it fairly well, I would suggest low dose (maybe 500mg daily) for several weeks. Valcyte is the proper antiviral for CMV but it has a black box warning that it may cause cancer. Valtrex is only marginally effective with CMV but I believe every little bit can help. This is why I also take the Lysine.
CMV when it infects the body, incorporates itself into every cell in your body. Sometimes only in certain areas.
In conclusion I have tested negative for almost every std test under the sun except positive for cmv . I also had a cmv pcr test which showed no cmv culture found. But I have read it is adept at hiding in your immune system weakening it from the inside. Do you think I could be one of the unique cases where HIV could not show up in the blood tests but actively be present in my body damaging it?
I would appreciate any help provided. It could SAVE my life. thanks.
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.
My husband just had a blood test for CMV, IGG came back high at 4.31 the test was for CMV (IGG, IGM). Should we be concerned? Should he have follow up tests? His IGM came back <0.90. And I was tested and my numbers were Negative.
Does this mean he has herpes or some other STD?
Please help. Very perplexed.
OK WELL I HAD A TEST BACK IN APRIL 08 WITH A TEST OF HERPES VIRUS 1 IGG DETECTED AND IGM NEGATIVE OK SO NOW I GOT TESTED FOR CMV IN SEPTEMBER 08 TEST RESULTS CAME BACK POSITIVE CMV IGG AND IGM DETECTED I AM 15 WEEKS PREGNANT AND I AM 100% HAVING THIS BABY NO DOUBT.I AM REALLY WORRIED THOU BECAUSE ALL I GET BACK IS THAT HERPES AND CMV ARE REALATED INFECTIONS I HAVE A QUESTION???
1 ARE THEY BOTH THE SAME JUST AS BOTH HAVE COME UP DIFFERENT NAMES??
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.
In conclusion I have tested negative for almost every std test under the sun except positive for cmv . I also had a cmv pcr test which showed no cmv culture found. But I have read it is adept at hiding in your immune system weakening it from the inside. Do you think I could be one of the unique cases where HIV could not show up in the blood tests but actively be present in my body damaging it?
I would appreciate any help provided. It could SAVE my life. thanks.
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!
I have been tested for mono and CMV, but the doctor has yet to give me my results and mono has came back negative 3 times. They had also found that my thyroid levels are low, so they are sending me to a endocrinologist. I am just curious on what else they may test me on. My symptoms include fever (usually around 103), tiredness (I sleep up to 18 hours a day and even when I wake up, I am still exhausted) and fatigue.
This symptoms are driving me crazy.. I dont know if I have mono or cmv.. I tested for mono 3 weeks ago and came back negative. However cmv has almost the same symptoms as mono. Most of the symptoms have disappeared, but I am scared that I have infected someone..Went to the dr and told me not to worry about it... I try not to think about it but I dont want any of my family to get sick because of me...
I do have a decent amount of experience with cmv though. Cmv is a virus that almost everyone contracts as a child and carries antibodies for. The issue with pregnancy is if you have an active infections, not if a blood test shows you have antibodies for it. If you were newly infected during pregnancy or have a low enough immune system that can actually allow the dormant virus to become active again then it is a concern because it can cause things like blindness and deafness.
I just got the results of a blood test yesterday. I was tested for CMV, Epstein-Barr and HIV. I was told that my CMV and Epstein-Barr levels were high. I was also told that HIV antibodies were undetectable, thank God! Unfortunatly, I am still worried about possible HIV infection because my doctor was not able to clearly define the relationship between CMV, Epstein-Barr and HIV.
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