Christopher
Senior Member
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- Pennsylvania
What is the evidence of antivirals suppressing immune function? My NP claims that as well but I was unable to find any proof of this.
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I will certainly discuss with my doctor when I get my latest test results back. Thanks.
I started on Valcyte in early June 2013, I did 2 weeks of 1800 bid and then went to 950 bid. I did have some early improvement but then I think I did too much as I started to feel better in end of June/July (WARNING) and then in Aug I had surgery to remove 1/2 of my thyroid so that set me back a bit as well. I'm coming up on 5 months of treatment and will be retesting my HHV-6 titers and NK activity next week. Also seeing a new Rheumatologist in a couple of weeks since I have a + ANA and want another opinion.
I don't have a me/cfs specialist. I'm not even diagnosed with cfs (don't really care, its a trashcan diagnosis in my opinion). I do have a very caring, open-minded doctor who is willing to test for anything I want and try different treatments, as long as he sees no harm in them. And he takes insurance, which a lot of specialists seem not to do.@vamah you live in the DC area like I do, I could never find a good CFS specialist in the DC or Baltimore area who do you see?
I don't have a me/cfs specialist. I'm not even diagnosed with cfs (don't really care, its a trashcan diagnosis in my opinion). I do have a very caring, open-minded doctor who is willing to test for anything I want and try different treatments, as long as he sees no harm in them. And he takes insurance, which a lot of specialists seem not to do.
I decided last week to go to 1350 a day now. Hopefully, I will get my hhv6 test results back this week and see where I stand. I had gone with the Montoya protocol because I know someone who brought hhv6 levels down to undetectable using that protocol. That person' s levels were never anywhere near as hign as mine, though, so that might explain why 900mg was enough.Ok, just want to help and please take this in the nicest way, from what I read about your Valcyte treatment regimen your doctor is doing it all wrong. I don't understand why s/he is having you do it this way where you go up to 1800 mg/day for a few weeks than down to 900 mg/day for a while then back up to 1800 for a while and so on.
With Valcyte and other antivirals, it is a long-term treatment where you start low and quickly build up to the target daily dosage which you then maintain for at least one year. Starting low and building up for the first week or so in the treatment is to check CBC, liver, kidneys and how you tolerate the drug.
From what I know all CFS doctors do it this way and as I said generally the best target daily dosage to take for at least a year is 1350 mg/day (Lerner and Montoya do it this way). Some people can handle a long term target of 1800 mg/day to try and get faster results but it can be hard to tolerate for others. 900 mg/day is usually too little especially if you have no problems tolerating the drug and going up and down up and down in dosage is not recommended at all unless there is another issue like liver or blood problems.
Many people don't know this about Valcyte but it was designed to work best against CMV and works only reasonably against HHV-6 because it has a 20-fold lower intracellular concentration in HHV-6 infected cells when compared to CMV infected cells in vitro.
This is because Valcyte (actually ganciclovir since Valcyte is a prodrug), like the other nucleoside analog antivirals, needs to be initially phosphorylated by specific viral kinases to "activate" it. It is phosphorylated very well by the CMV UL97 protein kinase but not as well by the HHV-6 UL69 phosphotransferase (the HHV-6 homolog to CMV UL97) and therefore has 20-fold lower concentrations in HHV-6 infected cells.
Anyway, that's why 900 mg/day might not be enough to get results within one year.
Neutropenia (abnormally low number of neutrophils in the blood) is a known potential side effect of Valcyte. That can leave you susceptible to infection. This is probably what your NP is referring to. It is also what scares many docs away from using Valcyte.What is the evidence of antivirals suppressing immune function? My NP claims that as well but I was unable to find any proof of this.
Neutropenia (abnormally low number of neutrophils in the blood) is a known potential side effect of Valcyte. That can leave you susceptible to infection. This is probably what your NP is referring to. It is also what scares many docs away from using Valcyte.
Good docs using Valcyte check neutrophils monthly and reduce Valcyte dosage (or stop entirely) if neutrophil numbers drop too low. The low neutrophil effect is reversible if caught before the neutropenia is severe, so the risk is not as great as many docs think it is.
I haven't seen data that all antivirals have immunosuppressant qualities, either, but it could be true. I think there's a lot we don't know about antivirals -- they're all relatively new.Thanks SOC. I did know about the neutropenia with Valcyte. My NP stated that all antivirals have immunosuppressant qualities, which I haven't seen on Google anywhere. Thankfully I have an appointment with Sue Levine next week who will hopefully do some more thorough testing.
It seemed to work that way for me.I would think that if you do have active infection, your immune system is already underperforming and antivirals could improve the situation.
I haven't seen data that all antivirals have immunosuppressant qualities, either, but it could be true. I think there's a lot we don't know about antivirals -- they're all relatively new.
It seemed to work that way for me.
Good luck with Dr Levine!
It could be true, but when a doctor makes that claim without sources, I'm less likely to trust him with this serious condition.
Time will tell, but i think my neutropenia is from valcyte. The last fortnight i have been using AHCC herbal extract to help increase immune function. There is abit of science behind using ahcc in cancer patients undergoing chemo and it protects their immune function from the chemo. In a couple of weeks time we will see if this is the case with my neutrophils, also interested to see if it increases my nk numbers.
cheers!!!
I take AHCC everyday as part of my supplement treatment.
Have u seen changes to nk function/or numbers and has it kept your neutrophils up?
The changes i have noticed in the short time being on ahcc that my sinusitis is almost gone 'touch wood', so maybe its improving my immunity as sinusitis is very common in immune suppressed people.
Only had NK function (13 LU) measured once during CFS diagnosis back in September. All my WBC counts have been completely normal so far on Valcyte (knock on wood )
A month or so before I got the sudden flu illness in January I started having a chronic sinus infection and every morning when I blew my nose there was dark green snot indicative of an infection even though I didn't feel sick at all! It was really weird.
Something definitely was getting screwed up with my immune system leading up to the fall, and the sinus infection continued with green snot every morning since January until maybe a couple weeks ago. As I've started to feel better on my aggressive treatment and supplements it seems to have gone away.
Now as you know by my posts the way I'm treating myself I wouldn't be able to tell you what is making what go away because I'm doing so much at once. Dr. Teitelbaum says that Candida overgrowth gives you chronic sinus infections or sinusitis so treating that will make it go away. I have been treating Candida along with everything else but would never be able to tell you what drug or supplement I am swallowing is fixing what ;-)