1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

reviewing dr lerners videos

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, May 23, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,525
    Likes:
    3,461
    australia (brisbane)
    http://www.treatmentcenterforcfs.com/

    i just watched dr lerners 2 videos again, see how much i can recall, somethings i thought were interesting.

    Correct me if im wrong as well, but it seems alot of testing for the herpes viruses is very inaccurate especially titre levels as it was mentioned that pieces of these virus can be reactivating can be causing issues but wont get picked up in many tests. I think there is a certain research test he gets done that he finds only in cfs patients and referred to it as a good biomarker for cfs/me. It makes u wonder then if any who fits the criteria for cfs/me who has had past exposure to these viruses should be trying antiviral treatments. it also seem to be important to be tested for bacterial co-infections as they dont seem to respond as well, also age is another to not respond as well. It might be why the sinus infections knock the crap out of me.

    Its is interesting how he mentions ebv is stored in the b-cells, could this be how ritux works and might be why theres an interest in av's with ritux. cmv is in monocytes and hhv6 is in the genome. with ritux is there any info in subgrouping ritux responders into the different herpes viruses. From what i have read i would say those with cmv and hhv6 might be non responders to ritux, maybe those with a combo of infection with 1 being ebv could respond to??

    His energy index score(EIS) is interesting, i have tried to work it out several times but when he mentions naps it throws me off as i cant nap, but he explained that it can be lying down and resting. he also mentions an improvement in 1 point is significant and a points score of 6 he classes as a cure, but this isnt 100% and may confuse people abit when it is mentions the high rate of cfs cures, i think it would be better worded as improvement in functioning, not really a cure.

    Now that i understand the EIS better, i will say that i was a 3 on his scale before antivirals and currently a 6, but this varies between a 5-7 with an occassional 8(been awhile). So going by lerner i have recovered, i would say i have improved but not recovered, plus i want to get upto a 9 or maybe a 10, doesnt everyone? also just to be more stable instead of jumping between a 5 and a 7. Do i sound greedy?? We will see how the valcyte i have recently started works out.

    SO i think after watching the videos, the wording cure is really an improvement. Those of us that have been on av's awhile who have gone up 2 point or over the 6 point mark, are we expecting too much to find more improvement from av's, although maybe we need to stay on these meds to maintain our improvement?? I think improving our nk function is the next thing to look at but how do we do this?? Non responders to av's, maybe need to investigate bacterial infections further to get a positive effect from av's?? Maybe having me/cfs for a long time hampers our chances of getting to a 10 as irriversible damage has been done??

    Can someone better at using this site then me make a survey up of before and after energy index scores from av's as well as being able to maintain their improvement when stopping av's or need to stay 'onn' to maintain improvement.

    cheers!!!
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,525
    Likes:
    3,461
    australia (brisbane)
    b-cells are a resevoir for ebv and dr lerner mentions this. After reading some more on ritux, the b-cell depletion drug, it said that a 1/3 of patients with ME improved(so not a total cure either). Is this group of patients the same type that lerner improves/cures with valtrex only??

    This might be why dr K is looking into valcyte with ritux as viruses like cmv and hhv6 arent 'stored' in the b-cells, only the ebv. so an only ebv group may respond to ritux where other groups with ebv plus 1 or 2 of the other viruses will require valcyte?? Maybe the other non responders are in the lerners hard to treat group with bacterial co-infections like lyme??

    It would be nice to know if the nk dysfunction is caused by infections or if the infections occurr because of the nk dysfunction. Maybe we need to be tested for every dam pathogen and treat as many as we can?? When the pathogen studies come out it will be interesting. Any news on when this is happening??

    cheers!!!

See more popular forum discussions.

Share This Page