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Valcyte or not....my question

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by soxfan, Jun 16, 2011.

  1. soxfan

    soxfan Senior Member

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    I just finished 2 months of Nexavir and I had no reaction to it at all-good or bad. I am trying to decide now whether or not to try either valcyte or valtrex. I am in a dilema because I have read that unless you have a very high titer in HHV6 then valcyte will be of no help.

    I had my HHV6 done at ARUP as a number not a titer and not sure if it is considered high enough 0.0-1.1 was considered normal range and mine was 21.44 There is no way to compare that to a titer. My EBV was also a number at 640. These were both IgG.

    I had previously been treated for Lyme with over 20 abx and am not sure I ever had Lyme so I don't want to go down that route again of taking something which isn't going to be of any help. My body has had so much stuff put into it.

    I am asking this here because the doctor I see does not prescribe any thing other than Nexavir so I will have to go to my Lyme doctor for anti viral treatment. He is the only one willing. I also want to mention that I did have a titer done in Nov 2010 and it was 1:160 which is just above normal. The ARUP test was done in March 2011.
    I need some help here on this please anybody!

    soxfan
  2. Waverunner

    Waverunner Senior Member

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    Isn't there a genetic expression profile which helps determining if you have a HHV6/EBV reactivation? I would take Valcyte if you have a HHV6 reactivation, in case of EBV Valtrex is the better choice.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    if u have ebv and hhv6 take both av's, thats what dr lerner does with his patients aparently.

    cheers!!!
  4. soxfan

    soxfan Senior Member

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    I am not sure about the profile but I will have to look into that. I am willing to take whatever av's are necessary as long as I am a candidate for them..thanks
  5. Timaca

    Timaca Senior Member

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  6. soxfan

    soxfan Senior Member

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    Thanks Timaca...what are you treating the HHV6 with? I am pretty sure the titer test was done at Focus labs and the other done at ARUP. That is why I am questioning the results because they are so opposite. I am going to ask to have them redone again at Focus.
  7. Timaca

    Timaca Senior Member

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  8. undcvr

    undcvr Senior Member

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    Valcyte yes, even if your HHV6 are 1:160 and EBV is active. Valcyte worked better for me than Valtrex did. I just lowered my Valcyte dose after being on the highest dose continously for 6 months. I cannot say that I have chronic fatigue anymore. I can excercise moderately without crashing.

    All this is happening after 15 years of CFS with what I am almost sure now was almost consistently recurring EBV.
  9. soxfan

    soxfan Senior Member

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    Dr Komaroff seems to think the EBV is active but my levels for that weren't really all that high either. I am just very skeptical about taking such a powerful medication if it won't do me any good. I am going to get retested before I start any treatments. The doctor who did the titer said that it is considered a normal level for people that have been exposed at some point. I also read the same thing on the HHV6 foundation sight so I am rather confused.....
  10. Timaca

    Timaca Senior Member

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  11. CBS

    CBS Senior Member

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    After 18 months on acyclovir (improved for 6 months and then back slid) I was recently switched to Valcyte. I was anxious about the potential side effects and toxicity but my symptoms were getting much worse (including rapidly worsening arrhythmia, bradycardia, 3 second pauses between beats, duplexes, etc. - all captured on a Holter monitor).

    So far (a little over six weeks) my response to Valcyte has been very encouraging. Testing Liver, Kidney and creatinine monthly. Doing OK. I get the reluctance to go on such a powerful med. I was having issues that made the risks worth it. I also have a doc that is very familiar with using Valcyte in ME patients. It is a very personal decision.
  12. soxfan

    soxfan Senior Member

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    Thanks Timaca and CBS...I think what made me confused was the fact that I had two different tests done..the titer and the elisa. There is no way to compare the two and they both had opposite results.
    I see the doctor in a few weeks and will have him retest me and then I will decide. I am not as unsure about taking Valcyte as I am about the fact if it is something that will help.

    I was reading Dr. Montoya's study criteria and I don't even come close to the levels that he would treat so that is a concern also. Guess I need to do some more reading!
  13. undcvr

    undcvr Senior Member

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    Can you get a PCR Real Time DNA test of EBV in the blood ? That will show if EBV is detectable in the blood or not no matter what your titers are. Once it is 'detectable' most docs won't hesitate to put you on Valcyte.
  14. aquariusgirl

    aquariusgirl Senior Member

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    CBS..does yr doc have any idea why you stopped responding to acyclovir?

    I have this all ahead of me... and I can't really fathom what the strategy is..

    PLUS....my NK cells cytotoxicity (or whatever that parameter is properly expressed) is about 3 on a scale of 5-180.....so it's just a bandaid anyway right?

    Sigh....A functioning brain would be nice....A long term solution would be nicer....
  15. CBS

    CBS Senior Member

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    I most likely didn't take his advice to rest for several months (even after I started to feel better) seriously enough. It's wasn't a cure but it did lead to big improvements, especially in headaches and cognition. I'm now having a similarly good reaction to Valcyte (it would have been nice to see these gains without the increased toxicity of Valcyte).

    Good luck!
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I was watching montoya's video from stanford again and picked up that some patients didnt have high titres to hhv6, i cant remember what test it was that picked up another version or area of hhv6 infection, but he does say its harder to treat but does respond to valcyte. Maybe if u watch the video again u will pick up what it is im refering to, i just cant remember exactly. Also i have heard and read in some older posts where montoya is now using lower doses of valcyte which he is finding just as effective and less die off type reacions etc but cant confirm this but would be nice if some of his patients could let us know.

    cheers!!!
  17. soxfan

    soxfan Senior Member

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    I have decided not to try any of the antivirals right now. I saw Dr. K in Boston yesterday and he stated once again that he will not treat his patients with Valcyte until the complete study has been published and there is real proof that it would be beneficial to his patients. I asked again about my HHV6 levels and he only said they were extremely elevated (21.44) Elisa. So I don't feel right going to my other doctor who would put me on Valcyte or any other anti viral if I asked.

    I am just going to stick it out for now and hope the completed study comes out soon so he will make a decision. He did put me on florinef hoping that might help me. I don't have any salt in my sweat so he feels I am having a problem with that....I don't see him again until October but he said if anything comes up before then he will get in contact with me. So I am assuming he would treat with that level (HHV6) I have.
  18. undcvr

    undcvr Senior Member

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    Just so you know extremely elevated HHV6 levels do suggest an active HHV6 infection. Same for EBV if you tested it indirectly through IgA and IgB levels. And according to Lerner's non-permissive theory of viral replication, these viruses are replication inside the cells and it is very hard for commercial lab tests to detect them. That is, the virus does not stay in the blood long enough to actually be detected even by say PCR. By the time the virus spills out into the blood to be 'detectable' alot of CFS symptoms would have already occurred and you would be quite far along the spectrum of a CFS patient.
  19. soxfan

    soxfan Senior Member

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    My blood levels for HHV6 was tested through ARUP lab..Only the IgG was tested. I have no idea where EBV testing was done. The problem is I have no way of really knowing just how elevated my level was since it seems as though not many doctors use this lab for testing. Even though it was way above normal I don't know what most CFS patients test at...
    The doctor did tell me the virus's don't hang around in the blood. He said they used the plasma part of the blood to check for levels. I don't know if this is how the other labs test too....I just really don't know what to do!
  20. undcvr

    undcvr Senior Member

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    Montoya refers to this stage of the HHV6 infection as 'chromosomally integrated HHV6 infection'. Somehow by this stage the virus has managed to integrate itself into our chromosomes and orchestrate its replication from there. I would assume that it would also alter the the entire function of the cell. Not much is known about HHV6 at this level of infection except that it would take an even longer course of AVs to remove it from the cell. At this point I think that methyl nutrients would also be very helpful as methylation can silence gene expression.

    Soxfan can you get your doc to write you a script to specifically test for the EBV virus using PCR DNA ?

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