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Valcyte is working and what are my options

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by jlynx, Nov 30, 2015.

  1. jlynx

    jlynx Senior Member

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    Just got lab work back. My HHV-6 levels have gone down from 13.99 to 7.28, since starting treatment in February!

    My IGF-1 is low - 288, reference range 93-342
    And I have high cortisol - 21.8

    I know those are not uncommon for CFS. My Parvovirus did not move at all- 5.7. I've been taking Oxymatrine for that (although not as long as Valcyte), and my doctor also just had me start taking Amantadine. I know the only proven treatment is IVIG/ GG shots, but there is no way I can afford it, so what are my options? My immunoglobulin levels are good so how would I get covered for it? Does anyone know how much the GG shots cost?

    I am also working on improving my sleep so I can get my growth hormone level up and start feeling better in that aspect, trying different drug and non-drug options.
     
    Last edited: Nov 30, 2015
  2. BurnA

    BurnA Senior Member

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    Are you feeling better ?
    If not then does it matter what the virus levels have gone down to ?
     
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  3. jlynx

    jlynx Senior Member

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    Not really, that's why I'm wondering if better treating the Parvo would help.
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    Proven treatment for what? Most insurances only cover IVIG for certain primary immune deficiencies. CVID is one I know of.

    Also, why would you have to pick and choose what to treat? Why not treat multiple things at once, once you know you can tolerate a med.
     
  5. jlynx

    jlynx Senior Member

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    IVIG being the only effective treatment for Parvovirus.

    Sorry I didn't make myself clear. I am treating multiple things, that's why I mentioned trying to improve sleep for GH. I know everyone is different but most people feel better on Valcyte by this point, so my question is is it likely I am not doing better because the Parvo is still high?

    And I thought it was worth posting that the Valcyte was working as encouragement for those that are on it. I also have not had side effects from it. Although numbers don't matter as much if you don't feel better, I think it is still encouraging.
     
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  6. minkeygirl

    minkeygirl But I Look So Good.

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    IVe been taking Valcyte for 9 months and I haven't noticed any difference.

    I always go by how I feel vs what the labs say.

    Everything is like figuring out a puzzle. You'll only know if you have success treating the parvo. If that is still why you feel bad. No one can say for sure

    And since you can't afford GG find other options I guess. No insurance is going to pay for it.
     
    Last edited: Nov 30, 2015
  7. minkeygirl

    minkeygirl But I Look So Good.

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    I was thinking you might want to change the title of your thread to something about parvo since that is really what you're asking about isn't it?
     
  8. SOC

    SOC

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    Antibody levels are not a particularly good indicator of treatment success or failure. They do not directly track level of infection. You can have high antibodies if you had a recent infection that is cleared. You can have low antibodies and high level of infection if your body is not producing antibodies well. So I wouldn't pay too much attention to changes in antibody levels in assessing treatment success. :)

    I was positive (by PCR), but not very high, for Parvo and Coxsackie. A few months of Equilibrant resulted in negative PCR tests for both. I realize that Equilibrant is not a standard treatment for either, but according to my ME/CFS specialist, it has been known to help in some cases. It did for me. Since I was not eligible for IVIG at the time, it was my only option. I'm glad I tried it.

    Since then, my GG levels dropped low enough that I now get IVIG. It's prohibitively expensive if not covered by insurance. Last time I looked, my insurance company is charged something like $15,000 per infusion. Since insurance companies usually negotiate special discounts, it's probably even more expensive if you pay for it all yourself. GG shots may be another matter, I don't know.

    Valcyte did the most for me (I had high HHV6 titres, too), although that may be because it was the first major treatment I received, so there was the most room for a significant improvement. I did notice a difference when the Parvo and Coxsackie cleared, though. In fact, I felt better after every pathogen treatment -- to greater and lesser degrees, but always better.

    It sounds like you have a good doctor who knows what he's doing. :thumbsup: Good luck with your treatment!
     
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  9. jlynx

    jlynx Senior Member

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    Wow that is confusing to me. I thought for sure it being lower was a good thing.

    Thank you. I really hope the Equilibrant gives me some relief, since the IVIG is not an option for me right now. I will ask how my doctor how much the cheaper GG shots are though.

    I have been feeling a little better the past few days, mostly mentally and mood-wise. I'm thinking it's from the Curcumin I just started taking since I read that it was found to be as effective as Prozac as an anti-depressant! Awesome stuff.
     
  10. SOC

    SOC

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    It probably is a good sign. :) It suggests that your body was chugging out lots of antibodies and now it doesn't feel the need to work quite so hard. That's probably good. The thing is, titres not being lower is not necessarily a bad sign. You body can continue to produce a significant antibody response after the infection is cleared. That's why you don't get the same infection again shortly afterwards -- how we develop immunity to various pathogens after exposure (including vaccines). At the same time, having low titres to start is not necessarily a good sign that you don't have an infection unless you are certain your immune system is capable of producing the relevant antibodies in expected numbers.

    Yeah, it's not a straight-forward situation. A good doctor knows antibody data needs careful evaluation in parallel with a number of other information -- symptoms, state of the immune system, etc.
     
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  11. Clerner

    Clerner Senior Member

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    Did you find out about price of GG injections vs. Iv for parvo? Been taking av's for over 2 months but still in lots of pain all over (high parvo titers). Did equilibrant help?
     
  12. jlynx

    jlynx Senior Member

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    My appointment is on the 28th- I will let you know what I found out. I've now been on Valcyte for 11 months and Equilibrant for 6 months. I switched after one box of Equilibrant to the cheaper White Tiger brand of Oxymatrine. I have not experienced any relief.
     
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  13. Clerner

    Clerner Senior Member

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    Sorry you have had no relief! It almost feels like the av's exacerbates my pain! So much pain I feel it throbbing in my head and often get sharp, shooting pain in random places: ankles, hands, wrists, ears. I think I'm going to go off av's for week and see if pain dies down. Keep me posted! Thanks!
     
  14. jlynx

    jlynx Senior Member

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    Sorry to hear you are having a lot of pain. I did not get to chance to ask about the cost of GG shots. But from a couple sources it seems like it's either $50 to $100 per shot, I'm sure it would vary per doctor though and if your insurance would cover it. I hope you find relief soon.

    I saw a different doctor who had different opinions than my last. She wants me to stop taking the Valcyte soon since I've been on it for so long. She's having me tested for a couple more things to see if there's markers for what's causing my issues. But she think it's from Lyme. I'm going to start getting LDI (Low Dose Immunotherapy) shots every 7 weeks and I got my first one today. My last doc never mentioned it, but she wants to try different things since I've been on treatment a long time without change. It is affordable at $60 per shot. I should feel a little better or worse from it within a week. A flare is still good news because it means the therapy will work, just at a weaker dose. If nothing happens I will need a stronger dose. She's had Lyme/ CFS herself and was personally helped by the shots. She gets one every once in a while as maintenance when she starts to have symptoms again.
     
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  15. Clerner

    Clerner Senior Member

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    Thanks. That sounds promising. Keep us posted on the effects. I just started low dose naltrexone for the pain. Praying it helps.
     
  16. jlynx

    jlynx Senior Member

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    LDN is great and has helped a lot of people, I hope it works for you.
     
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  17. darroo

    darroo Senior Member

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    any updates on valcyte i just started famvir in a few months will start valcyte. are you guys still alive lol:cool:
     

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