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Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 24, 2010.

  1. anncavan

    anncavan

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    Hi @cort,
    As a patient that falls into Group B, here's my understanding... I have been aware of his research results for about the past year. Once I was diagnosed with Lyme this February, Dr. Lerner made it a point to reassure me it wasn't a death sentance. I'd still get better. The big learning with this research was through the data diving. It was through that practice of data analysis that he even realized what was going on with CFS + Lyme patients. You're right, they still improved but started at a lower EIPS. He has been having more and more success though with patients being treated with long term antibiotics for lyme. I just started abx about 2.5 months ago and within the past 2 weeks I've seen a jump of 0.5-1 EIPS. And that's been a BIG deal for me. Oh, and to clarify again, EIPS is a peer reviewed and published measurement. It's not a pie in the sky benchmark.
     
  2. jackie

    jackie Senior Member

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    thanks Anncavan! for the dosage info.

    In nearly 4 years I've only stopped for several days one time - and im taking acyclovir instead (and although it generally takes 2-3 weeks before feeling the full effects of "stopping")...i began to feel the effects big time in just those few day! (i had to stop for some testing procedures - not voluntary! THAT I would NEVER do)

    I have heard of some folks taking a "drug holiday" for periods of time...to judge efficacy etc, but my instincts tell me (that in my case) that would NOT be a good idea! (especially since i have shingles all the time (in different stages)...wouldnt like to see what might happen if i stopped "cold turkey"!)

    I'll be content if i can titrate down to maybe 800 mg per day at some point in the future. Interesting about your liver function problems...mine went all over the place in about the 1.5 years mark (fortunately i keep good records and can track these for myself)...but have evened out and are now perfect...knock on wood!)

    One more thing, if you dont mind (dont need to post the actual "numbers" if uncomfortable with that, of course)...but are you aware of the tcell counts of patients over the course of the study? for example did most have theirs checked at the start (or were they "assumed" to be low as so many with me/cfs are?)...or were they rechecked as time went on or based on any symptoms reported...if so, at regular intervals

    I know there is some controversy with constantly checking and re-checking these "markers" - the "futility" of this or calling it an "unecessary" test).....did YOU have them checked or do you know if yours are in a normal or LOW range? or if there has been a marked change during your treatment? a spike at some point perhaps? (this is of interest to me regardless of the controversy.)

    thanks again for all the info and your willingness to share with us!

    (oh, and do you know of dr. lerners opinions on adding any "immune modulators" of any kind to the "mix" of AV's? any interferons for example?)

    jackie
     
  3. slayadragon

    slayadragon Senior Member

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    Hi Ann,

    That's really helpful. I've been on Valcyte for about 8 months (450mg/twice a day) and Famvir for 10 months (500 mg/twice a day). It has helped with cognitive functioning and mold reactivity. My score on Lerner's EIPS is 10. (It would be lower if I weren't practicing any mold avoidance, I'm sure.)

    Dr. Guyer is pretty good with the antivirals, but knowing Dr. Lerner's strategy is really helpful.

    I really am worried about resistance occurring. It feels like "Flowers for Algernon" to me: just because I've gotten my brain functioning and other functioning back doesn't mean it's going to last.

    Does Dr. Lerner talk about this with you? What does he say?

    Thanks much for your help!

    Best, Lisa
     
  4. jackie

    jackie Senior Member

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    wanted to chime in Lisa...with my own experience.

    My most noticeable improvements are in the area of cognitive/memory etc., and yet i still experience PEM (and depending on the triggers...very SEVERE pem!)

    BUT...it lasts for a MUCH shorter period of time, and is MUCH less severe.

    During a pem/crash it seems that nearly all the improvements are gone...so much so that each time it happens i momentarily panic!

    But once the pem subsides...im back to where in was at the START of the episode - NOT where i was when i started to notice improvements, and NOT having LOST the vital improvements (even if they are measured in "inches"!)

    It took me a long time before i fully wrapped my head around this...and now i dont think i WILL lose what i've gained (of course, anything can happen...but since i was cautiously optimistic for so long about this - (maybe a year or more before i considered this possibility of permanence).....it doesnt seem to be coincidental or temporary! Hope this helps!

    To be on the safe side...i do monitor myself...and obviously try to avoid that dreaded big crash, when i can.

    But although i am housebound, and so rarely go anywhere to overextend myself physically...i have MORE than my share of emotional stressors (i have an elderly mother that "depends" on me and I'm watching the inevitable decline, for example...and my husbands health has been less than perfect for the past year) AND i have those pesky shingles that plague me day in and day out...so i cant say my life is the easiest.

    I know that if I lived in a less stressful environment...I would be considerably MORE improved.

    And yet..i AM moving forward - NOT back!

    BTW... i have cardiac issues (i take atenolol for OI and tachycardia) and my doc warned me (sternly!) NOT to aggravate that area...as damage can happen via the viruses, that CANT be undone, if not careful. So, i take this to heart and i dont EVER push it!

    take care, jackie
     
  5. alex3619

    alex3619 Senior Member

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    Hi Gerwyn

    This is a follow-up to your report that the Lerner paper didn't show any patients recovering beyong seven, as I promised. You are correct. The highest average recovery point I could find was 6.88.

    However the interview with, I think, Cort, indicated that some patients recover to a 10. We also know from this thread that some patients reading this have made such a recovery.

    Which brings me back to my original statement. The cut-off for treatment was 7, and the implication, without being explicitly stated, was that many improve beyond that. The paper was probably remiss in not explicitly stating that.

    I am concerned that, from a reading of the interview it is clear that full recovery of heart damage does not always occur. This was what I was worried about with respect to vascular modelling.

    I suspect that many of the recovered patients will always have a weakness for aneurisms and strokes, and their medical team needs to be made aware of the possibility so that it can be managed. This probably wont be an issue while their blood pressure remains low, but for any former patient who subsequently develops high blood pressure this could occur at increased risk.

    Bye
    Alex
     
  6. slayadragon

    slayadragon Senior Member

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    Improving to a 10

    I honestly don't want to co-opt this thread, but I need to make a clarification.

    Yes, I improved from a 3 ("sitting, standing, walking 2-4 hours a day") to a 10 ("normal") on this scale. But I'm pretty sure I'd never have done it if all I'd done is go to see Dr. Lerner and follow his protocol.

    Before mold avoidance, I couldn't even take 250 mg of Famvir without getting (truly!) deathly sick. God knows what would have happened to me if I'd taken Valcyte.

    So I'm pretty sure I'd have been in the group of non-responders. And though I never had an IgeneX test, my even more scary die-off to 15 mg of doxy makes me think that, yes, I did have Lyme and likely other co-infections as well.

    Since taking those drugs, I've been able to substantially reduce the extent to which I've had to be careful about my exposure to mold without having negative effects. Perhaps eventually, I will be able to do so even further.

    I'm not faulting this particular study for not including mold as a variable. Not every study should include every possible treatment, I agree.

    But I still think that if there's a possibility that patients meeting Dr. Lerner's study criteria can benefit from his treatment and get to a 10 (rather than a 7 as the highest one in his study did), he might want to consider why that particular improvement occurred.

    Perhaps then he would be able to figure out how to also get other patients to a level of improvement above a 7 and thus have more convincing study results.

    Best, Lisa
     
  7. slayadragon

    slayadragon Senior Member

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    "Naps"

    On a different note, one thing that's always perplexed me about Dr. Lerner's Energy Index scale is the mention of "naps."

    When I had "active CFS," I didn't take what I would characterize as naps.

    Some of the time when I was in bed, I was "awake" (sort of). Sometimes I was aimlessly playing with the computer or attempting to read, others staring at the ceiling for hours at a time.

    Other times, I was lying with my eyes closed in a (poisoned) stupor. I don't think that counts as a nap though.

    On the other hand, I know a few really healthy people with high-powered jobs and regular strenuous exercise routines who frequently take time for naps. They get what could clearly be called "sleep" during these naps, and awake refreshed.

    This is in violation of Dr. Lerner's criteria of "no naps," but I think they'd be categorized as a 10 (normal) in terms of energy by anybody's definition.

    I've talked to a number of Dr. Lerner's patients over the years on various boards, so I do believe that he knows the definition of CFS.

    His mention of "naps" still seems really peculiar to me though.

    Best, Lisa
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have been on av's for over 18months and have improved from a 6 to a 9 out of 10, still have up and down days and still have sleep problems, but av's have definately helped. I have had a few breaks from av's mainly to validate to myself that its working. Within a week i start to feel crappy again, after reading lerners study i think i will just stay on them permanently for a couple more years as he seems to think that the av's stop ebv infecting other cells and taking them long term gives the virus time to die out naturally.

    Im only taking 500mg twice a day, have used higher doses but for only a couple of weeks, cost holds me back. Does anyone know if higher doses that lerner recommends would possibly kill the virus directly rather then just stopping infecting other cells. Im also going to look into immunoglobulin injections and interferon tablets http://www.pharmacy1010.com/category_list.asp?id=16 , will talk to my cfs doc about these and maybe add this to my antiviral treatments. If av's at higher doses have a direct affect on killing ebv, i might just budget for that.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    bump bump bump
     
  10. LaurelB

    LaurelB Senior Member

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    This thread is too long for me to skim through, so my apologies if this has already been asked. Does anyone know what dosage of av's was used in the study? I've been taking valtrex for years (500mg 2x daily) with no benefit, but I am one of the more severely afflicted. I would love to increase my dose to whatever dosage Dr. Lerner used in his study.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    i have read he prescribes 1000mg 4 times a day
     
  12. cfs since 1998

    cfs since 1998 *****

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    That's correct. Valtrex 1g four times a day (1g every six hours). And he tells his patients to drink a lot of water to prevent kidney stones.
     
  13. anncavan

    anncavan

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    San Francisco, CA
  14. LaurelB

    LaurelB Senior Member

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    I've tested positive at various times for EBV, CMV, HHV6, Lyme and XMRV. So, I have the whole loot. :) I was on Valcyte for 6 months with no improvements and my doctor felt uncomfortable continuing me on it, so we switched to Valtrex. I will slowly increase my dose and see what happens. I've also tried antibiotics for the Lyme to no avail. Thanks for the info!
     
  15. Seeker

    Seeker

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    DE
  16. Dolphin

    Dolphin Senior Member

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    Well said, Cort. I think the finding is relevant to at least some readers of PR. I'm not convinced the Fukuda definition does exclude such patients and am certainly not convinced it should.
     
  17. Dolphin

    Dolphin Senior Member

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    Little to no holter monitor data at the end

    Firstly, let me say I found this study interesting.
    And it's useful to have something in print. [Aside: It is frustrating that doctors such as Paul Cheney have published so little - unfortunately, that can mean other doctors are slow to take ideas on board].

    I am frustrated with the lack of the data from the Holter Monitors at the end.

    In the methods we get all this information about how it was scored:
    It is even mentioned in the abstract:
    But unless I missed something, we are given virtually no info on how the patients were at the end (and indeed aren't even given the data on the initial "total severity scores")

    From the discussion:
    From the introduction:
     
  18. Dolphin

    Dolphin Senior Member

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  19. Dolphin

    Dolphin Senior Member

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    Which studies?
     
  20. Dolphin

    Dolphin Senior Member

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    Useful observations.

    Although to me, this doesn't sound like a 10 "normal" on the http://www.treatmentcenterforcfs.com/energy_index_score/index.html
    - if somebody doesn't feel "normal", I think one can just say one is a 9 (say) or less esp. if after work, one "then spend(s) the rest of their time recovering from working".

    I think the talk of being able to do a 40 hour sedentary job, social activities, etc. suggests that cognitive stamina/mental fatigue is also being measured.

    Maybe it can be improved but I think it's a lot better than a lot of scales used in the field - it is more encompassing. Also the definitions of recovery in other studies are often/nearly always worse, IMO, from what I can recall.
     

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