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

[Rossy191276]

Hi Jesse...

I had seen these results via previous presentations and since I seem like the classic severe me/cfs case that would have these autoantibodies going on (extreme pots 60 to 140 HR on standing and extreme muscle weakness - completely bed bound for last 6 months) I thought I would likely have some of these but after convincing my doctor to get tests I was negative to all of them...

So based on my results and results of several others who I have talked to who believe they have me/cfs who have been tested and negative I would say at this point the idea that we are looking at different combinations of factors causing similar outcomes seems most plausible to me

 

[Gingergrrl]

(extreme pots 60 to 140 HR on standing and extreme muscle weakness - completely bed bound for last 6 months) I thought I would likely have some of these but after convincing my doctor to get tests I was negative to all of them...

So you have POTS and muscle weakness but were negative on all nine of the Cell Trend autoantibodies? Are you positive for any other autoantibodies? I totally agree that we are looking at different combinations of factors causing similar outcomes as you said.

Edit: Cross-posted with Jesse

 

[Jesse2233]

Hi Jesse...

I had seen these results via previous presentations and since I seem like the classic severe me/cfs case that would have these autoantibodies going on (extreme pots 60 to 140 HR on standing and extreme muscle weakness - completely bed bound for last 6 months) I thought I would likely have some of these but after convincing my doctor to get tests I was negative to all of them...

So based on my results and results of several others who I have talked to who believe they have me/cfs who have been tested and negative I would say at this point the idea that we are looking at different combinations of factors causing similar outcomes seems most plausible to me

Interesting, thanks for adding that Rossy. I'm sorry to hear about your current condition.

Was your onset post-viral? Were any of your CellTrend values "at risk" or borderline high?
And have you tested positive for any other autoantibodies?

I think you're likely right that we're looking at several different combinations of factors. Case in point there was a percentage of patients in Light's slight that did not have any of the CellTrend autoantibodies.

That said, given the 3x replicated findings, I suspect the CellTrend subgroup is fairly large.

Edit: cross posted almost the same thing as Ginger

 

[Hutan]

The impression I have of studies of both people with ME and people with POTS is that only a percentage of people have these autoantibodies in significant quantities - and some of the healthy controls have them too.

(I need to spend some time re-reading the studies so I can put the arguments for Celltrend testing to my doctor.)

Probably not all of the autoantibodies that are relevant are on the Celltrend test or have even been found yet.

Perhaps there are issues with the blood collection, freighting and analysis that can affect the results.

Perhaps there needs to be other things going on that makes having these autoantibodies a problem.

(and of course there is also the question of why the body is making these autoantibodies - is there an ongoing infection that is having impacts of its own?)

Thanks @Rossy191276 for telling us about your results. It's useful for tempering our expectations. If I campaign for my doctor to help me send samples to Celltrend, it's good if I don't assert that this is the definitive test of ME - and then get negative results. I'm sorry that you are so unwell Rossy.

Edit - ha, also cross posted.

 

[Jesse2233]

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.

Yea I couldn't believe they covered it. I thought they'd made a mistake at first

My doctor felt the adrenergic autoantibodies showed that I have "autoimmune POTS

Likewise. I'm positive for A1 which controls vasoconstriction (thus explaining my POTS, poor stamina, and brain fog).

I was "at risk" for M4, but I'm not sure if that means it's pathogenic.

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)?

I'd be very curious to know if there's a link between enteroviruses and the CellTrend ABs. We of course know that EVs can create myocardial, diabetic, and ATP translocator protein ABs

Anyone else here have their CellTrend results and are willing to post them?

 

[Rossy191276]

Interesting, thanks for adding that Rossy. I'm sorry to hear about your current condition.

Was your onset post-viral? Were any of your CellTrend values "at risk" or borderline high?
And have you tested positive for any other autoantibodies?

I think you're likely right that we're looking at several different combinations of factors. Case in point there was a percentage of patients in Light's slight that did not have any of the CellTrend autoantibodies.

That said, given the 3x replicated findings, I suspect the CellTrend subgroup is fairly large.

Edit: cross posted almost the same thing as Ginger

Hi all...

I will try to give you idea of my condition and potentially relevant results as concisely as possible. To give some context I am treated by Dr John Whiting in Brisbane Australia who is an associate of Neil McGregor who presented at the conference. I have spent 2 months in 2 seperate stints in hospitals and had a lot of testing done to rule out other possibilities...

I was VERY negative to nearly all of them except the a-1 adrenergic which was 5.5 with limit being 7...

I am waiting on an antibody result (not sure which one off top of head) from neurologist but have had basically all standard neurological tests done + muscle biopsy and other autoimmune tests first time in hospital which were all negative...

I was in the McGregor study and although I don't know Much of the details yet my doctor has said I am clearly in one of seven genetic subtypes that they believe predisposes ME/CFS.

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.

I had a sudden severe onset at the time I was trying a pale o type diet and exercising a lot. I later tested positive to Lyme LTT tests and PCR but have always been negative on all other Lyme tests... I had what I would consider a complete remission early in illness after getting an incredible appetite for a period of a couple of weeks. I relapsed about 2 months later when I was back exercising a lot again.

All in all the Naviaux theory is the one that makes the most sense for my experience and what I know so far... genetic vulnerability coupled with possible pathogen triggers it... perhaps early illness was body beating/neutralising Lyme and the crazy appetite was my bodies effort to 'fill the tank' which was enough to remit... but not knowing my vulnerability I and perhaps pathogen not being completely beaten i remitted...

 

[RL_sparky]

Anyone else here have their CellTrend results and are willing to post them?

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)

 

[Jesse2233]

Thanks @RL_sparky

What are your main symptoms?

 

[RL_sparky]

What are your main symptoms?

Drop dead fatigue, brain fog, digestive issues are my big three. I have POTS also.

 

[Rossy191276]

These are my actual numbers

 

[Gingergrrl]

Perhaps there are issues with the blood collection, freighting and analysis that can affect the results.

I have no doubt that this can occur if the blood sample got very delayed in getting to Germany or was not centrifuged correctly etc. But in my case, I did the test twice and they were five months apart. The first was shipped by me from Los Angeles from a private specialty lab. The second was shipped by my doctor at OMI and it is unclear to me if the Cell Trend technicians even knew that it was the same blood from five months earlier. Both times, I was positive for 7 of the 9 autoantibodies. The numbers were not identical but remained high across the board.

These are my actual numbers

Rossy, it is fascinating to see your results with all nine negative and such low numbers! Mine are mostly in the 20's and one is in the 30's. To me this also makes me think the test is legit b/c they are not telling everyone that they are positive and people are getting such a variety of results.

 

[Hip]

I'd be very curious to know if there's a link between enteroviruses and the CellTrend ABs. We of course know that EVs can create myocardial, diabetic, and ATP translocator protein ABs

POTS seems to be often triggered by viral infection (even in pure POTS patients, who do not have ME/CFS). since increasing evidence indicates POTS may be caused by autoantibodies, this suggests that viral infection can induce the autoantibodies that cause POTS.

 

[Jesse2233]

POTS seems to be often triggered by viral infection (even in pure POTS patients, who do not have ME/CFS). since increasing evidence indicates POTS may be caused by autoantibodies, this suggests that viral infection can induce the autoantibodies that cause POTS.

Know of any studies linking EVs to POTS specifically?

 

[Rossy191276]

I have no doubt that this can occur if the blood sample got very delayed in getting to Germany or was not centrifuged correctly etc. But in my case, I did the test twice and they were five months apart. The first was shipped by me from Los Angeles from a private specialty lab. The second was shipped by my


the 20's and one is in the 30's. To me this also makes me think the test is legit b/c they are not telling everyone that they are positive and people are getting such a variety of results.

Yes Gingergrrl I was quite shocked because it was from following your story and having some similar symptoms (extreme muscle weakness, breathing weakness during crashes, I also am to weak to talk for most of the last 4 months, and dysautonomia) that got me thinking I'd likely have some of this going on...

I just spent time in hospital where they took me through all the traditional medical combos for treating Pots and i reacted badly to all of them even in small doses (eg beta blockers, midodrine and flurinof, ivabradine)...

I believe it's possible that in part for some dysautonomia is simply a protective response in severe ME to prevent the person from using energy (so once again could be different causes for same eventual outcomes)

 

[Hip]

Know of any studies linking EVs to POTS specifically?

Research on POTS viral etiologies seems to be still in its infancy, and I have not seen any studies linking specific viruses to POTS (but hopefully future studies will start to uncover which viruses tend to trigger POTS).

This contrasts to ME/CFS, where there is an established set of viruses that have been linked to this disease.

 

[Learner1]

POTS seems to be often triggered by viral infection (even in pure POTS patients, who do not have ME/CFS). since increasing evidence indicates POTS may be caused by autoantibodies, this suggests that viral infection can induce the autoantibodies that cause POTS.

My CFS doctor explained it similarly... He said my EBV and likely HHV6 had pushed my immune system to create the autoantibodies - I have A1 and M4 and POTS.

@Rossy191276 - we chose to do the CellTrend first, but he said we could also do the more expensive Mayo autoantibody panel if nothing showed up on CellTrend. Maybe you can try that and see if anything pops up.

He also did a gene test for my HLA SNPs.
He said I had a predisposition to autoimmunity as I already had Hashimotos and celiac.

Has anyone seen a list of the 38 SNPs correlated with ME/CFS patients that they mentioned?

 

[Snow Leopard]

These are my actual numbers

Are these results from the Celltrend test or is there an Australian lab that tests for these?

 

[Learner1]

Are these results from the Celltrend test or is there an Australian lab that tests for these?

That's a CellTrend report from Germany.

 

[Gingergrrl]

Yes Gingergrrl I was quite shocked because it was from following your story and having some similar symptoms (extreme muscle weakness, breathing weakness during crashes, I also am to weak to talk for most of the last 4 months, and dysautonomia) that got me thinking I'd likely have some of this going on...

I am so sorry Rossy, and it is so frustrating each time that I thought I had figured something out about my illness, only to be wrong (and knowing that even now, I could end up being wrong at the end).

I just spent time in hospital where they took me through all the traditional medical combos for treating Pots and i reacted badly to all of them even in small doses (eg beta blockers, midodrine and flurinof, ivabradine)...

I do well with beta blocker and Midodrine but I did not tolerate Florinef whatsoever and I have never tried Ivabradine.

I believe it's possible that in part for some dysautonomia is simply a protective response in severe ME to prevent the person from using energy (so once again could be different causes for same eventual outcomes)

I completely agree that there are many different causes to our illnesses which makes it so difficult to sort it all out.

Research on POTS viral etiologies seems to be still in its infancy, and I have not seen any studies linking specific viruses to POTS (but hopefully future studies will start to uncover which viruses tend to trigger POTS).

I would love to know more about viruses and POTS b/c I had an unknown respiratory virus and two weeks later, I developed POTS (in Jan 2013). The confounding variable was that about 2-3 months prior to developing POTS we moved into the rental with the toxic mold.

@Rossy191276 - we chose to do the CellTrend first, but he said we could also do the more expensive Mayo autoantibody panel if nothing showed up on CellTrend. Maybe you can try that and see if anything pops up.

I think it would actually be easier to get tests from Mayo covered than Cell Trend (at least with U.S. insurance b/c it is a U.S. lab vs. a German lab). Although I guess for Rossy it would probably both be private pay from Australia.

 

[Rossy191276]

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...

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!