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

Gingergrrl

Senior Member
Messages
16,171
Please note that this is in no way a diagnostic or clinically useful test. The differences between ME and controls found by Scheibenbogen are only statistical and not very big.

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?

Gingergrrl I am not sure off the top of my head the antibody my neurologist sent for but will confirm will report results when I get them

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

I have been tested twice for these antibodies. Once by cell trend, the other by a German university hospital because of my POTS. Both times negative.

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".

I've also had very high ferritin and high homocysteine.

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

I agree that the repeated suggestion that TGFbeta is high may be a more promising lead, although I do not discount the antibody results being an indirect indicator of something else that may come to light in time.

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.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
You can call it nothing special, but if that were me, I'd be considering Dr Lerner's protocol, using Valtrex to lower EBV titers, which his published studies showed led to improvements in ME/CFS symptoms after several months.
Ok thanks. I will investigate
 

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
That's interesting stuff, @Rossy191276 . I've also had very high ferritin and high homocysteine. You're the first person who I've come across with the same results.

My ferritin is now consistently under 500 (which is considered normal range by one lab although another says the upper limit should be 250) and my homocysteine went down to normal levels with folinic acid supplementation.

I've either been told that these results are a sign of inflammation or infection (I have positive tests to d.fragilis and positive IgMs for borrelia) or have been referred to specialists who don't know/care.

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
 

viggster

Senior Member
Messages
464
I don't doubt that we could have some exotic antibody creating weird symptoms... On the other hand, I suspect the important task is to find some and then treat the auto immune problem... Seems to be the same set of tools in any case... Not sure we need to find every last one.

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
 

Jesse2233

Senior Member
Messages
1,942
Location
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?
 

RL_sparky

Senior Member
Messages
379
Location
California
that's great, really hope he can release data as he goes

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."
 

Gingergrrl

Senior Member
Messages
16,171
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.

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.

That is really interesting and thanks for sharing it @viggster
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
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 hemachromatosis 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
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:

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
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?

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
 

Learner1

Senior Member
Messages
6,305
Location
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?
 

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
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."

Ok Thankyou I will check previous testing from hospital and ask my doctor at next appointment...

Regarding iron panel I have low Transferrin and very high Transferrin saturation but my doctor doesn't seem to focus on this and when I have asked other doctors they don't seem to know much about what it might mean..

You've had an iron panel done, too?
 

knackers323

Senior Member
Messages
1,625
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
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
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
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.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Ok Thankyou I will check previous testing from hospital and ask my doctor at next appointment...

Regarding iron panel I have low Transferrin and very high Transferrin saturation but my doctor doesn't seem to focus on this and when I have asked other doctors they don't seem to know much about what it might mean..

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