• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

anni66

mum to ME daughter
Messages
563
Location
scotland
IMO it is reliable. It is fairly expensive although the prices may have gone down from when I first did the test over a year ago. And you can send the blood from anywhere in the world as far as I know.



I am also in Los Angeles like Jesse and had no problem sending the blood samples to Germany.



My doctor felt the adrenergic autoantibodies showed that I have "autoimmune POTS". My own instinct is that the muscarinic/cholinergic auto-abs cause the muscle weakness but b/c I also have the calcium autoantibody (that links w/LEMS) it is hard to know for sure.



I do not get head spins or dizziness even though this is one of the first questions that doctors ask me! I had a very low/weak pulse pressure prior to IVIG and also had hypotension in general. My issue when I stood/walked was dyspnea and if I pushed it, it led to chest pain/angina. Luckily this is much better for me now.



Wow, you got your insurance to cover the Cell Trend tests?!!! That is amazing. Since I was trying to get them to cover IVIG and Rituximab (and they did), I did not even bother with trying to get the Cell Trend tests covered and just paid for them myself.



It does not make you a candidate for Ritux but it certainly would show that you have autoimmunity. For me, the Cell Trend auto-abs combined with other autoantibodies, a positive ANA titer, etc, and then an extremely positive response to the autoimmune dose of IVIG, was all evidence that I could be a good candidate for Ritux. My doctor is using the autoimmune protocol, which is well established for RA and other autoimmune diseases, (vs. the currently experimental protocol of Fluge and Mella).
Wow- it really is a different world in the US
Our paediatrician won' t even do an active B12 test ! She didn' t know thatvthere was such a thing....
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Cheers everyone...

Learner1 my neurologist talked about Mayo and had actually worked there a while back but in the end I am pretty sure he chose to send for just one antibody test and I think he sent it to Oxford... I knew a lot more about Cell Trend and not much about the Mayo panel but I had read about it... I haven't received info on results yet...
I think what we heard this weekend is that we could develop all kinds of antibodies, so having not found them yet doesn't mean you have none.

Sounds like you are getting good help and maybe you'll be able to teach us something. I was very impressed with Neil McGregor this weekend...
 

Gingergrrl

Senior Member
Messages
16,171
Learner1 my neurologist talked about Mayo and had actually worked there a while back but in the end I am pretty sure he chose to send for just one antibody test and I think he sent it to Oxford...

Rossy, do you know which autoantibodies they looked at on the panel that your doctor sent to Oxford? I really wanted to be tested for auto-abs at Oxford but it was a dead-end and I just couldn't figure out how to do it from the U.S. and gave up!

Thanks Gingergrrl yes it is a brutal process and glad to hear you are doing better with IVIG and I hope the Ritux is helpful as well...all the best!

Thank you so much and I really appreciate it! Best wishes to you as well.

I think what we heard this weekend is that we could develop all kinds of antibodies, so having not found them yet doesn't mean you have none.

I agree that having not found them yet does not mean that they are not there. I have heard several people say that Dr. Angela Vincent in the U.K. is discovering new auto-antibodies every week. I think they are pretty much endless and if I have eleven that we know of, I can't even imagine what others I might have that we do not know of!
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
I agree that having not found them yet does not mean that they are not there. I have heard several people say that Dr. Angela Vincent in the U.K. is discovering new auto-antibodies every week. I think they are pretty much endless and if I have eleven that we know of, I can't even imagine what others I might have that we do not know of!

I need to learn more about Dr Vincent.

We can also look at this through Naviaux's model of a general genetic predisposition to a stuck purinergic response with different symptoms based on immunological idiosyncrasies (one of those being the CellTrend cohort)
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
. I have heard several people say that Dr. Angela Vincent in the U.K. is discovering new auto-antibodies every week. I think they are pretty much endless and if I have eleven that we know of, I can't even imagine what others I might have that we do not know of!
That's what Mark Davis was describing... We have an endless ability to make antibodies.

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.
 

Gingergrrl

Senior Member
Messages
16,171
I totally agree w/you 100% @Learner and my doctor said there is no point looking for additional autoantibodies in my case b/c it would not change my treatment plan of IVIG & Rituxan.

I do wonder though if there are specific autoantibodies that could be of use diagnostically or treatment wise (i.e. knowing I have the calcium autoantibody led to lung cat scans b/c of the high correlation to small cell lung cancer) and led to testing for LEMS.

It could clarify if ME/CFS is really my diagnosis vs. something else but regardless it would not change my current tx plan.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
Have you been tested to see if you have any active chronic infections with the viruses commonly linked to ME/CFS (coxsackievirus B, echovirus, EBV, HHV-6, cytomegalovirus and parvovirus B19)?

Viruses can enter the body relatively asymptomatically, so you don't necessarily have to have an obvious acute infection (like say gastroenteritis) in order to catch an ME/CFS-triggering virus.
Off the top of my head, EBV, but that's nothing special
 

pattismith

Senior Member
Messages
3,931
I wonder if I will do the celltrend test for CFS (cheaper) or the full test for POTS...

I don't know if I have POTS, because no-one tested me for that in my country... But I'm sure I have orthostatic intolerance because I feel often sick when I stand up too quickly. This was increased when I was taking vasoconstrictors to give me energy (cafeine, ephedrine...).
I also had once a bad head spin when I was in my worst time with strong pains and fatigue... this time I visited the doc, he said there was nothing really wrong and gave me Gabapentine, but I couldn't take it more than one day (strange side effect)...


Here are my Celltrend results for what it's worth:

Anti α1 adrenergic antibodies (> 7.0 U/ml) 11.2 (positive)
Anti α2 adrenergic antibodies (>
15.0 U/ml) 10.5 (negative)

Anti β1 adrenergic antibodies (> 15.0 U/ml) 15.0 (positive)
Anti β2 adrenergic antibodies (> 14.0 U/ml) 9.4 (at risk)

Anti M1 cholinergic antibodies (> 9.0 U/ml) 8.9 (negative)
Anti M2 cholinergic antibodies (> 9.0 U/ml) 19.5 (positive)
Anti M3 cholinergic antibodies (6.0 - 10.0 U/ml at risk) 7.5 (at risk)
Anti M4 cholinergic antibodies (> 7.0 U/ml) 6.0 (at risk)
Anti M5 cholinergic antibodies (> 14.2 U/ml) 23.8 (positive)

Thank you for sharing! Would you tell us if you do have POTS?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I

is the testing reliable? Is it expensive? Can blood be sent from North America?

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. They do not look like the sort of differences we see for autoantibodies in lupus or RA etc. They are slight differences in proportions.

What this means is that a test on single patient means absolutely nothing. Please realise this. I would not waste money on a test that cannot be diagnostic in its present form.

Unfortunately it is standard for test findings like this to be replicated by a few other labs before the dust settles and everyone realises there is at best a tiny clue that might produce something with more work.

One of the things that worries me is that there are two sorts of antibodies involved. I am unclear how you get the same set of symptoms from interfering with two different receptors. There are other diseases where more thane antibody is involved but the results are much more clean cut there.
 

Gijs

Senior Member
Messages
690
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. They do not look like the sort of differences we see for autoantibodies in lupus or RA etc. They are slight differences in proportions.

What this means is that a test on single patient means absolutely nothing. Please realise this. I would not waste money on a test that cannot be diagnostic in its present form.

Unfortunately it is standard for test findings like this to be replicated by a few other labs before the dust settles and everyone realises there is at best a tiny clue that might produce something with more work.

One of the things that worries me is that there are two sorts of antibodies involved. I am unclear how you get the same set of symptoms from interfering with two different receptors. There are other diseases where more thane antibody is involved but the results are much more clean cut there.

I have heard that the patiënts from Light have been tested in the same laboratory in Germany, so they didn't test the bloodsamples in their own laboratory. I also know that some patiënts have been tested twice in Germany with different outcomes.

Professor Edwards, Is it correct that also healthy people have some low levels of autoantibodies without any disease?

I think that the high levels of TGF b found in the blood is much more significant. Do you agree with this? I would put my money on this finding.
 

Rossy191276

Senior Member
Messages
145
Location
Brisbane, Australia
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

Learner I can say in talking to my doctor who is working closely with Neil McGregor that McGregor was understandably very understated in the way he presented the genetics findings and privately they are very confident they have uncovered an important piece of the puzzle.. it didn't come across in the presentation but they have actually classified seven suptypes of genetic clusters from that study with what they consider very strong results (they were amazed at the data) and will now look to replicate...
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
My doctor consistently finds very high ferritin and homocysteine levels for me that correlate with illness severity which he has said are inflammatory markers so I was interested to see the Canadian presented present on findings of homocysteine.

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.
 

JamBob

Senior Member
Messages
191
@Art Vandelay and @Rossy191276

Have you guys with high ferritin had haemochromatosis ruled out as a cause? My mum found out she had it from a 23andme test and there are loads of younger guys on her forum. It's easily treatable but if you don't know you have it, damage (from excess iron) occurs over time to all kinds of organs.
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
@Art Vandelay and @Rossy191276

Have you guys with high ferritin had haemochromatosis ruled out as a cause? My mum found out she had it from a 23andme test and there are loads of younger guys on her forum. It's easily treatable but if you don't know you have it, damage (from excess iron) occurs over time to all kinds of organs.

Yes, I've been tested for it twice and apparently I don't have it. It was good that it was picked up in your Mum's case!
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I have heard that the patiënts from Light have been tested in the same laboratory in Germany, so they didn't test the bloodsamples in their own laboratory. I also know that some patiënts have been tested twice in Germany with different outcomes.

Professor Edwards, Is it correct that also healthy people have some low levels of autoantibodies without any disease?

I think that the high levels of TGF b found in the blood is much more significant. Do you agree with this? I would put my money on this finding.

As far as i could see normal people have just as high antibodies as patients. The proportions of high values may be a bit less but it is not that different. most individuals in both groups come out negative on most of the tests. For rheumatoid factor about 80% of patients are positive and about 10% of normals. We are not looking at a difference anything like that.

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.