The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Have Scheibenbogen, Light, and Bergquist already cracked ME/CFS etiology?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Aug 14, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,197
    Likes:
    29,125
    USA
    If you removed the ME/CFS vs. "controls" and just looked at the autoantibody results in general, could they be significant for autoimmunity? Meaning if one person did the test twice and was negative on all nine autoantibodies and someone else did the test twice and was positive on 7+ of the nine autoantibodies (and was symptomatic), wouldn't this mean something?

    Thanks. Rossy, and I would love to learn which autoantibodies Oxford tested you on once you get the info.

    Thanks, Jimmy, for sharing this and to me it is significant that you were tested twice but do not have the autoantibodies. Although I would never speak for my doctor, I would imagine that he would interpret this to mean that the cause of your POTS is not autoimmune vs. someone like me who he views as having "autoimmune POTS".

    That is interesting and I also have very high homocysteine (16 to 19 on last two tests) but normal Ferritin.

    I also believe that TGF- b1 is a promising lead and from my experience, it can also relate to mold exposure causing inflammation. My prior mold doctor tested me for TGF-b1 and it was 9400 in 2015 (at the height of my mold exposure) and it is currently around 2100 (within the normal range which I believe cuts off at 2380). I am not saying that mold is the only trigger of TGF-b1, but in my case, it was definitely a trigger and I improved once being removed from that environment and getting rid of our belongings.
     
    Rlman and cigana like this.
  2. Kenny Banya

    Kenny Banya Senior Member

    Messages:
    321
    Likes:
    527
    Australia
    Ok thanks. I will investigate
     
  3. Rossy191276

    Rossy191276

    Messages:
    91
    Likes:
    284
    Brisbane, Australia
    Yes Art as far as I can tell most people tend to have lower ferritin... it got to the point where I could go to doctor and predict ferritin based on symptom level and homocysteine was usually higher when ferritin was higher... my ferritin has been as high as 450 but usually high 300's when Sympromatic and down into the 200's when I was in relative remission.

    I was also negative to hemocromotosis and my doctor is confident it is inflammatory response...

    I have also been positive on some LTT lyme and PCR but negative on others and antibiotic/herbal treatment hasn't seemed to of helped and my symptoms are severe ME and I've never had some of the classic Lyme symptoms...

    What treatments have you tried? Maybe we should keep in touch to compare progression... I am currently bed bound and severe
     
    Art Vandelay likes this.
  4. Rossy191276

    Rossy191276

    Messages:
    91
    Likes:
    284
    Brisbane, Australia
    Yes also tested and negative
     
    JamBob likes this.
  5. viggster

    viggster Senior Member

    Messages:
    436
    Likes:
    3,700
    Just FYI NIH is doing antibody discovery in the 40 patients they are now looking at. Dr. Nath developed a panel of something like 1,000 potential neurological auto-antibodies that helped him figure out something called nodding syndrome. I am eagerly awaiting results from this part of the study.

    press release:
    https://www.nih.gov/news-events/new...ng-syndrome-caused-response-parasitic-protein

    Good NPR story:
    http://www.npr.org/sections/goatsan...y-have-solved-the-mystery-of-nodding-syndrome
     
  6. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,862
    Likes:
    4,833
    Southern California
    wow @viggster thanks for the insight, Dr Nath is certainly on top of it

    Do you know if he's including the CellTrend ABs?
     
    dangermouse and Gingergrrl like this.
  7. viggster

    viggster Senior Member

    Messages:
    436
    Likes:
    3,700
    Well, I don't know if he is using the same assays they use but the panel he developed will almost certainly include all the same receptors CellTrend looks at - plus hundreds of other proteins found in the brain.
     
    NK17, PDXhausted, dangermouse and 5 others like this.
  8. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,862
    Likes:
    4,833
    Southern California
    that's great, really hope he can release data as he goes

    Not to take things too far off topic but do you know yet if he's looking for enteroviruses in tissue?
     
  9. RL_sparky

    RL_sparky Senior Member

    Messages:
    305
    Likes:
    1,549
    California
    I was hoping for the same thing. I previously posted on this board a response from Dr. Nath on this issue. I'm reposting it here in case you didn't see it.

    "I am really torn. I realize that the field is desperate for answers and waiting only adds to the agony. But all the same the field is filled with data that is hard to interpret, often not reproducible and in the hurry to publish they are incomplete studies. My suggestion is to wait and get the first paper out that is very detailed and has a comprehensive evaluation of many parameters and then follow it up with several manuscript on each of the testing's done. But as the data emerges it would become more evident if we need to rethink this strategy."
     
  10. Art Vandelay

    Art Vandelay Senior Member

    Messages:
    324
    Likes:
    1,467
    Adelaide, Australia
    @Rossy191276 sorry to hear you're so severe. I'll send you a message when I get a chance a little later today so we don't derail the thread :)
     
    Rossy191276 likes this.
  11. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,197
    Likes:
    29,125
    USA
    That is really interesting and thanks for sharing it @viggster
     
  12. TrixieStix

    TrixieStix Senior Member

    Messages:
    538
    Likes:
    890
    I've heard this too.
     
  13. Learner1

    Learner1 Professional Patient

    Messages:
    1,618
    Likes:
    2,860
    Pacific Northwest
    My ferritin has been as high as 605. At that point, as I'm a cancer survivor, my doctors sent me off for a CT scan and tested every cancer marker they could think of. No cancer for me, fortunately, but its worth considering.

    My doctor thinks my infections are in my liver. I'm on valganciclovir and IV antibiotics and a lot of immune supporting nutrients and my ferritin had gone down to about 250. My iron studies were weird with TIBC/UIBC low and iron saturation high.

    We found I'm heterozygous for the 2 HFE SNPs, which is the category of 10% of hemachromatosis patients. I did 3 phlebotomies, and ferritin went to 120.

    My CFS doctor fully supported the phlebotomies as iron can feed some of the bugs, particularly chlamydia pneumoniae but others as well.

    Have you had all your immunoglobulins and subclasses tested?
     
    Last edited: Aug 16, 2017
    pattismith likes this.
  14. Rossy191276

    Rossy191276

    Messages:
    91
    Likes:
    284
    Brisbane, Australia
    Hi Learner

    Thats a great result re your ferritin.

    thanks for the info re the iron and I will look more into it but I always was within range until I got sick and did test negative for hemochromotosis.

    I just had full body PET/CT scan and no cancer present...

    I am not sure what you mean by immunoglobulins and subclasses but will try to research...

    All the best to you

    Rossy
     
  15. Learner1

    Learner1 Professional Patient

    Messages:
    1,618
    Likes:
    2,860
    Pacific Northwest
    Many people with CFS have low total IgG and IgG subclasses 1 and 3, which are what fight viral and bacterial infections. There are other immunoglobulins as well as Natural Killer Cells to test.

    If its not hemachromatosis it could be infections. Ferritin is an "acute phase reactant."

    You've had an iron panel done, too?
     
  16. Rossy191276

    Rossy191276

    Messages:
    91
    Likes:
    284
    Brisbane, Australia
     
  17. knackers323

    knackers323 Senior Member

    Messages:
    1,350
    Likes:
    381
    hi @Learner1 why do the docs think your liver is infected, do you have abnormal liver results? i also have high ferritin results. i think many cfsers do
     
  18. Learner1

    Learner1 Professional Patient

    Messages:
    1,618
    Likes:
    2,860
    Pacific Northwest
    I've also had elevated AST and ALT and the bugs I have have been known to end up in the liver.

    It makes sense as the liver filters bad stuff out of our blood to rid the body of these threats to healthy cells.
     
  19. Learner1

    Learner1 Professional Patient

    Messages:
    1,618
    Likes:
    2,860
    Pacific Northwest
    This page has a helpful chart for interpreting your iron panel lab results.

    http://www.irondisorders.org/tests-to-determine-iron-levels/

    Yes, I've had multiple iron panels done. Much better at diagnosing iron overload than using serum ferritin.
     
    pattismith likes this.
  20. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,862
    Likes:
    4,833
    Southern California
    I still think this is a significant subset
     
    pibee, Gingergrrl and pattismith like this.

See more popular forum discussions.

Share This Page