CFS: Antivirals, Not doing well

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Sep 29, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. just wanted to report that for some reason, my condition, which had improved about 10-15% on antivirals, has now deteriorated almost completely.

    i had some stress a few weeks ago but this does not seem like it should be enough to bring me back to square 1!

    i feel awful...my brain fog is almost all back.

    i see dr. lerner this wednesday. i wonder what he will say.

    i think my first doctor was right...there is no real correlation between RNase L levels and improvement.

    i wonder if i could have a co-infection but i have been tested for everything. my mycoplasma pneumoniae is a little high but not high enough to treat he said.

    i will ask him if we should retest it. it has been many months since it was tested.

    i will maybe ask dr. lerner if he would consider adding tagamet to increase absorption of valtrex.

    this is really difficult! ugh

    sue

  2. ladybugmandy

    ladybugmandy Member

    kelly..thank you. it was very nice hearing from you.

    i had some transient itching which seems to have gone away and i also have some odd crustiness in my right ear canal. other than that, nothing new that i can remember.

    i was feeling so down today i emailed 2 lerner patients, one of whom has long since improved and one who is improving slowly. this temporarily made me feel better lol

    you made a good point about blood counts. i think dr. lerner does routine tests at every visit but i haven't looked at the tests for a while.

    the only thing i can think of that could have caused this is the stress and lack of sleep i experienced recently...but to think that the small amount of improvement i had was so delicate is a little discouraging.

    thank you again for caring. sometimes the depression becomes scary when its accompanied by brain fog. it is almsot unbareable.

    i hope you are doing well and am so glad you are improving overall. as always, it gives me hope.

    love
    sue

  3. deliarose

    deliarose New Member

    Reposting from another thread:


    Hi gals & guys.

    This issue of high SERUM B12 came up recently on the CFS Yasko list.

    I've cut and paste a post from Rich Van Konyenburg where he explains why PWCs often have high normal or v. high B12 in the blood, and why this can be misleading.

    He says conventional testing is not sophisticated enof and you have to run the tests from specialty labs that look at cellular or functional markers of B12 and folate in the cells.
    HTH.
    Delia


    Now we come to the subject of blood serum testing for B12 and folic acid. As has been discussed, in many cases of CFS, one finds from such testing that the levels of B12 and folic acid look just fine, and often are over the top of the normal ranges. However, these high values do not mean that the cells of the body are actually benefiting
    from effective use of B12 and folate.

    Here's why: First, these measurements are made in the blood serum, which is outside the cells. In a normally operating body, the levels outside the cells reflect what's going on inside the cells. However, that isn't true in CFS, which is far from normal. In the case of folate, there is a phenomenon known as the "folate trap." This means that when the utilization of the bioactive form of folate (5-methytetrahydrofolate) is blocked inside the cells, this form of folate builds up and leaks out of the cells, producing a high level in the blood serum. But the
    cells themselves become impoverished in folate. Second, and this is important for B12, the serum B12 measurement does not distinguish the bioactive forms of B12, of which there are two: methylcobalamin and adenosylcobalamin, from other cobalamins. The former is the one that is important for the methylation cycle. It is very possible to have a high total B12 level in the blood serum, but not have sufficient
    methylcobalamin to operate the methylation cycle at a normal rate. In order to determine whether B12 is being used effectively, it is best to evaluate methylmalonate in the urine, using a urine organic acids test, such as a Genova Diagnostics MAP. If methylmalonate is high,
    it is very likely that methylcobalamin is low. And the Figlu on this profile will tell you how the folate is doing inside the cells.

    It is of course up to you what you want to do, but my guess is that the $300 you would spend on the Vitamin Diagostics methylation panel (or, I think, a lesser amount for the Genova Diagnostics Metabolic Analysis Profile) would turn out to be one of the best investments you will have made.
  4. deliarose

    deliarose New Member

    If one's cellular immunity is totally compromised, would one benefit from antivirals?

    AFter all, anti virals don't kill viruses .. your immune system does.. all the drugs do is expose the virus.

    If one's immune system, specifically cellular immunity, is horribly compromised (because of say a methylation cycle block) then how would this therapy help?

    What are your NK cell activity numbers?
  5. ladybugmandy

    ladybugmandy Member

    hi there. thanks for your post. i had very extensive immune testing by dr. leo galland in NYC. everything was normal accept that CD ratio and one other CD-related thing (sorry...fog). my NK cells are a little low but still in normal range. my IL-2 i think was high.

    aside from that, the only thing that was abnormal was the HHV6 antibodies and EBV antibodies. my mycoplasma pneumoniae antibodies were a little high.

    i don't think my immune system is in bad shape...i think it is being suppressed by viral infection. at least, that is what i hope.

    thanks
    sue

  6. ladybugmandy

    ladybugmandy Member

    thats exactly what i'm waiting for...for the balance to tip, to know i have started to get to the other side...but i know is hasn't happened yet. the improvement is so minimal i wonder if it is even there sometimes.

    if it took you 20 months to get stamina, then perhaps i am being impatient.

    i have decided to maybe take some of the supplements i have (that cost me a mint) and just not tell dr. lerner...maybe the NAC, peppermind oil for my IBS, and B12 injectible.

    i have heard from 2 reliable sources now (both doctors) that RNase L acitivity is being found not to correlate with improvement....but i am sure my drastic drop has to mean something!

    thank you again...will keep you posted:)

    love
    sue

  7. deliarose

    deliarose New Member

    Your results are similar to mine, although I am surprised your Figlu is good.

    High citric acid.. If you're backed up at the top of the krebs cycle like this it indicates a glutathione deficiency per Rich.. because you need glut to convert to the next step in the cycle.

    I'm told low pyroglutamic acid means low gsh in teh kidneys.

    I can't find you on ebay. If you post on CFS-yakso, I can contact you back channel for more on this.

  8. SpecialK82

    SpecialK82 New Member

    Sorry to hear it's not going so well at the moment. I'll be interested to hear what Dr. Lerner has to say today. I know he was happy to hear about your RNase L levels last time you were there, so he thinks that it means something.

    Hopefully he will run some more tests today just to check everything out. I don't know if you have ever had a thyroid problem, but mine has acted very strangly in the last year (too low, then too high etc.) it may be another thing to test since that it very common with us.

    Looking forward to reading your post, hang in there!

    Kristina
  9. sascha

    sascha Member

    i stopped valcyte June 6th, after 5+ months. my HHV6 came way down, as did another virus. i then got on valtrex; am now on acyclovir.

    i felt ok enough early this month to go visit in my home state for a week. got very scared after that i'd overdone; i went into decline. but i seem to have recovered from that, and in general believe i am better. i am very weak and totally out of condition; have no stamina physically or mentally or emotionally BUT i see improvement.

    i've recently moved and managed that ok- wow. NOW i'm going after next phase of healing and wonder if it's something you might like to look into- i started reading about it online here through posts by Barrowinnovations. she had the CDSA (Comprehensive Diagnostic Stool Analysis) done and started working with doctor she found online- has regular phone consultations with him- he analyzed her testing and her questionnaire that she filled out, and put her on individualized regimen including recommendations for diet and supplements. she went from 5 years of being bed-ridden to going out, feeling quite normal, riding her bike. she inspired me to go this route. you can find her posts at this site.

    theory behind it is that 80% or more of our immune system resides in the guts, so problems there must be found and addressed. so much can be found wrong in our innards. the doctor she found knows how to uncover and prescribe for problems found.

    i've now had stool, blood, saliva, and blood tests, and filled out and e-mailed in HUGE questionnaire. i have my next consultation soon and will be put on regimen that will go after my particular problems.

    maybe you'd be interested int this. you can check out website at GetHealthyNow.com. or google CDSA.

    i hope you will find help- very best from Sascha
  10. sascha

    sascha Member

    i stopped valcyte June 6th, after 5+ months. my HHV6 came way down, as did another virus. i then got on valtrex; am now on acyclovir.

    i felt ok enough early this month to go visit in my home state for a week. got very scared after that i'd overdone; i went into decline. but i seem to have recovered from that, and in general believe i am better. i am very weak and totally out of condition; have no stamina physically or mentally or emotionally BUT i see improvement.

    i've recently moved and managed that ok- wow. NOW i'm going after next phase of healing and wonder if it's something you might like to look into- i started reading about it online here through posts by Barrowinnovations. she had the CDSA (Comprehensive Diagnostic Stool Analysis) done and started working with doctor she found online- has regular phone consultations with him- he analyzed her testing and her questionnaire that she filled out, and put her on individualized regimen including recommendations for diet and supplements. she went from 5 years of being bed-ridden to going out, feeling quite normal, riding her bike. she inspired me to go this route. you can find her posts at this site.

    theory behind it is that 80% or more of our immune system resides in the guts, so problems there must be found and addressed. so much can be found wrong in our innards. the doctor she found knows how to uncover and prescribe for problems found.

    i've now had stool, blood, saliva, and blood tests, and filled out and e-mailed in HUGE questionnaire. i have my next consultation soon and will be put on regimen that will go after my particular problems.

    maybe you'd be interested int this. you can check out website at GetHealthyNow.com. or google CDSA.

    i hope you will find help- very best from Sascha
  11. Atlanta8

    Atlanta8 New Member

    With Sascha - go and get a comp stool analysis done and find out what's going on - the antivirals need to work with your body and if you don't have enough resouces left your system's going to struggle.

    I'm going to get this done before going on AVs, and start prepping my body asap! :p
  12. Lichu3

    Lichu3 New Member

    read sergei001's recent post about valcyte blood levels. It's interesting to think that some may not be responding to antivirals because of inadequate blood levels of the medicine.
  13. ladybugmandy

    ladybugmandy Member

    hi there! quite interesting about the ANA and allergy shots! there is so much to consider....ugh!

    i had normal ANA when both galland and lerner tested it.

    we recently had some moldy drywall removed and replaced(at a hefty price:( )...and the air quality i think was OK when they tested it before anyway.

    next up is the carpet removal and new flooring installation, which it looks like we won't be able to afford for many, many months.

    thank you for your always-valuable suggestions:)

    love
    sue
  14. ladybugmandy

    ladybugmandy Member

    lichu..thank you. i did have my valcyte blood levels tested when i was under the care of dr. galland in 2007. at that time, i was taking 450 mg every 12 hrs.

    perhaps i will bring it up to dr. lerner.

    thank you again!
    love
    sue