CFS or POTS: research into causes & treatments for people who took the Celltrend antibody test

[Lolinda]

If you are new to this topic:
look here for a simple introduction or for how to get tested. Depending on the individual pattern of antibodies, they are a cause of POTS, CFS or OH, for which first treatment ideas exist, which are however expensive, not easily available, have side effects and and most of all, benefit is temporary. Hence, in this thread harmless treatment is sought that has a potential to offer permanent solution.

Purpose of this thread:
Prepare a questionnaire to all people who have taken the Celltrend test. Please do not yet answer the questions! But do criticise and make suggestions. If you read this and don't have feedback, asking interested questions helps too, so go ahead. Behind each of the questionnaire items, there is some reason to ask that, such as a possible cause of autoimmunity or some treatment chance.

I am sorry to all who have been waiting since a while for all this, but analysing all the research for developing the questions simply took several weeks. I thank those who helped me on the way by providing feedbacks: @Gingergrrl @Emootje @Research 1st @CAPOTSmom and @Gondwanaland

 

[Lolinda]

Questionnaire to all people who have results on the Celltrend antibody test

This questionnaire is to find out what the common things are among us: what could have brought about the antibodies and what has a chance to help. First impressions from the study by Prof. Scheibenbogen on these antibodies indicate that she succeeded to bring about temporary relief by plasmapheresis. Parts of a patient's immune system (all circulating antibodies, healthy or pathological) get exchanged for blood extracts from other people. It is a great success, as it proves that the antibodies indeed cause disease. Needless to say, it has risks and cost. We want low risk and most of all, a permanent solution. Hence there is reason to find out if simple healthy things help. Example: eating more resistant starch can help to dampen autoimmunity (it converts to butyrate, which feeds the Treg immune cells, which dampen autoimmunity). However, there are myriad such simple and healthy chances around and we have to find out ourselves which of them help, because no researcher did a study. This is why this questionnaire has so many items: each is a chance. It will require you some 20-30 minutes. That is much, but less than a life in disability....

Doctors are welcome to encourage their patients to take part! The more people answer this questionnaire, the better we discover treatment chances. Every single response counts! Future: in a second round, people who got retested will report on their changes in antibodies and on what they tried meanwhile. Again, we will learn what influences the antibodies! And in case you wonder why all this effort with testing antibodies instead of simply watching symptoms: the problem is that they change slowly. So we won't see anything like "take this pill and you are fine". But we may see for example "supplemental vitamin D decreases antibodies in 2 months by some %". If there are several such treatments, their combination could bring noticeable relief.

 

[Lolinda]

QUESTIONS

Antibodies in the Celltrend test

• A1: A2: B1: B2: M1: M2: M3: M4: M5:

General

• Current functional level as a number:
• Current functioning in your own words:
• Current age (or, if you do not want to specify, just adult or child):

The following questions are to find out which treatments are probably helpful or not. For example, if you tried something before the test, you didn't get better and you just received elevated antibody test results, then more likely than not, it does not decrease antibodies.

• Any of the following used often within the last 3 months before the Celltrend test? ketogenic diet, water fasting of at least 3 days, autoimmune paleo; magnesium, selenium, vitamin D or B2 in doses much higher than rdv, molybdenum, resistant starch, butyrate, LDN, alpha lipoic acid, borage oil, NAC. Any effects?:
• Any other treatments used often within the 3 months before the test that some believe to be effective against autoimmunity or inflammation? Any effects?:
• Any medical treatments for any autoimmune disease at any time so far? Did it have any effect on POTS or CFS/ME?:

All the following questions are of interest because they may hint at possible causes/pathomechanisms.

Comorbidities & improvable contributing factors
Please answer using either:

+elevated / -deficient / =normal / ?not tested. To indicate highly elevated or diminished values (where a doctor gets concerned) use: ++ or --​

or:

value units (normal range)​

• Immune defects:
• Nagalase: Th1/Th2 imbalance: Treg: CD8+:
• CRP: ESR: TNF: IL-6: sCD14: Other labs indicating inflammation:
• Have you tested deficiencient/sufficient/dont know for the following at some time (past or present) when POTS or CFS/ME started or aggravated? vitamin D: A: magnesium: zink: selenium: omega-3: DGLA: butyrate in stool: uric acid in blood:
• Vegetarian, vegan, ketogenic or high meat diet at some time when POTS or CFS/ME started or aggravated:
• Underweight:
• Liver issues, for example fatty liver, coffeine or alcohol intolerance, steatohepatitis, etc:
• SIBO: Leaky gut: Other gastro issues:
• SpO2 (= oxygen saturation in blood = SAT): %
• Neuropathy:
• Psych:
• Unusually warm or cold skin:
• Other:

POTS

• yes/no (as diagnosed by doctor or selfdiagnosis by heart rate and blood pressure):
• POTS since when:
• Anything you regard in hindsight as likely first signs before developing POTS:
• Sudden or slow onset? Suspected onset trigger (viral/bacterial/blood transfusion/mold in a building/...):
• Current triggers for POTS symptoms (morning/postprandial/etc):
• Increase in heart rate upon standing up:
• Increase in noradrenaline upon standing up:
• High/normal/low flow POTS:
• Where does your blood pool (abdomen/pelvis/legs/...):
  
• Further POTS causes known so far (yes/no/dont know): mast cell disorder: low 24h urine cortisol: low salivary cortisol: low aldosterone: low cardiac output / stroke volume: altered baroreflex function: sympathetic denervation: cardiac sympathetic dysautonomia: norepinephrine-transporter deficiency: decreased blood volume: muscle pump defects: or autoimmune autonomic neuropathy:

CFS/ME

• ME/CFS/none (as diagnosed by doctor or selfdiagnosis according to the criteria: ME, CFS):
• Since when:
• Anything you regard in hindsight as likely first signs before developing CFS/ME:
• Sudden or slow onset? Suspected onset trigger (viral/bacterial/blood transfusion/mold in a building/...):
• Malaise after physical exertion:
• Malaise after mental exertion (difficult thinking/meetings/socialising/stress/...):

 

[Lolinda]

Answering a comment from another thread:

I don't think you can say you have autoimmune POTS at this point. Elevated antibodies are found in healthy people without POTS or CFS too. These antibodies are not unigue. There is more wrong then 'only' autoimmunity.

Here are my arguments that these antibodies are a cause for CFS or POTS:

• These antibodies on the Celltrend panel have been used in the study by Prof Scheibenbogen. Plasmapheresis (throwing out all antibodies and replacing them via IVIG) brought about improvement. -> Antibodies are causative. (Unfortunately, the improvement was only temporary, but its still enough to prove that they are part of the chain of causation. They won't be the final cause, though.)
• While Jonathan Edwards said that he does not know whether these antibodies are causative or merely indicative / a byproduct, this opinion was before the Scheibenbogen study. At that time nobody could know. Now we have a very first indication for causation.
• This discussion with Scheibenbogen and Edwards applies to CFS, where there is no clear mechanism as to how the antibodies on the cellltrend panel cause disease. In POTS there is a clear mechanism, see also the next point.
• My main elevated antibody is the A1RAB (alpha1 adrenergic receptor antibody). If this receptor is blocked, then neuronal vasoconstriction is hindered, which is crucial to blood flow regulation. To confirm this mechanism, I have measurement results: Just one example from several ones: I have a whooping increase in noradrenaline by +608 pg/mL upon standing 10 min, as compared to supine. In this test setting, this is neuronal noradrenaline, which is to desperately try constrict vessels: If receptors are blocked, the body must mount huge effort to achieve the same vasoconstriction via remaining free receptors. Alternative explanations such as autonomic neuropathy or impairment of vasoconstriction by vasodilators are excluded by tons of further measurements...
• Symptoms seem to change with A1RAB levels. My POTS worsened during the last months and so did my A1RAB: they went from a 14.5 to 23, while normal is <7.
• Most of all, while it is true that healthy people do have such antibodies too, the cut-off values used by Celltrend are chosen high, such that almost no healthy people have such values. The few who have, are just slightly above the limit. I am far above the limit: double, respectively currently >3 times the max normal value.
• On this thread you see the values of some people so you can compare their health situation and their antibodies.
• Obviously, any individual can have further contributing causes for POTS...

Having said all this, I would like to get the correspondence between POTS symptoms and labs more clear. And infer about likely treatment chances! We can either a) wait years for published studies or b) do our own. We are enough people and we are faster than the years researchers need. Being a researcher myself, quite a few times did I go through funding, planning, executing and publishing research... so.. waiting for published research, confirmed by several groups just cannot happen fast and is a plan to stay sick for so many years.

I plan the questionnaire study outlined here on this thread, above. Your critical thinking is utmost welcome to improve it!! I received feedbacks from 6 people, but it definitively needs more. And thanks for your critical comment. I like these type of discussions. They push me to summarize my arguments.

 

[Lolinda]

New version of the questionnaire. The old version above is outdated. Sorry for this, the software does not let me delete it. So here is the new version:

QUESTIONS

Antibodies in the Celltrend test

• A1: A2: B1: B2: M1: M2: M3: M4: M5:

General

• Current functional level as a number:
• Current functioning in your own words:
• Current age (or, if you do not want to specify, just adult or child):

The following questions are to find out which treatments are probably helpful or not. For example, if you tried something before the test, you didn't get better and you just received elevated antibody test results, then more likely than not, it does not decrease antibodies.

• Any of the following used often within the last 3 months before the Celltrend test? ketogenic diet, water fasting of at least 3 days, autoimmune paleo; magnesium, selenium, vitamin D or B2 in doses much higher than rdv, molybdenum, resistant starch, butyrate, LDN, alpha lipoic acid, borage oil, NAC. Any effects?:
• Any other treatments used often within the 3 months before the test that some believe to be effective against autoimmunity or inflammation? Any effects?:
• Any medical treatments for any autoimmune disease at any time so far? Did it have any effect on POTS or CFS/ME?:

All the following questions are of interest because they may hint at possible causes/pathomechanisms.

Comorbidities & improvable contributing factors
How to answer these? If you can specify exact values, units and the reference range from the lab, thats ideal (do not omit the units or the range!). If you feel overwhelmed, just do the easy way using ++ + = - -- ?. Meaning: ++strongly elevated (doctor gets concerned), +elevated / =normal / -deficient / --strongly diminished / ?not tested.

• Immune defects:
• Nagalase: Th1/Th2 imbalance: Treg: CD8+: IL-10:
• CRP: ESR: TNF: IL-6: sCD14: Other labs indicating inflammation:
• Have you tested deficient/sufficient/dont know for the following at some time (past or present) when POTS or CFS/ME started or aggravated? vitamin D: A: magnesium: zink: selenium: omega-3: DGLA: butyrate in stool: uric acid in blood:
• Vegetarian, vegan, ketogenic or high meat diet at some time when POTS or CFS/ME started or aggravated:
• Underweight:
• Liver issues, for example fatty liver, coffeine or alcohol intolerance, steatohepatitis, etc:
• SIBO: Leaky gut: Other gastro issues:
• SpO2 (= oxygen saturation in blood = SAT): standing: sleeping:
• Neuropathy:
• Psych:
• Unusually warm or cold skin:
• Other:

POTS

• yes/no (as diagnosed by doctor or selfdiagnosis by heart rate and blood pressure):
• POTS since when:
• Anything you regard in hindsight as likely first signs before developing POTS:
• Sudden or slow onset? Suspected onset trigger (viral/bacterial/blood transfusion/mold in a building/...):
• Current triggers for POTS symptoms (morning/postprandial/etc):
• Increase in heart rate upon standing up:
• Increase in noradrenaline upon standing up:
• High/normal/low flow POTS:
• Where does your blood pool (abdomen/pelvis/legs/...):
• Further POTS causes known so far (yes/no/dont know): mast cell disorder: low 24h urine cortisol: low salivary cortisol: low aldosterone: low cardiac output / stroke volume: altered baroreflex function: sympathetic denervation: cardiac sympathetic dysautonomia: norepinephrine-transporter deficiency: decreased blood volume: muscle pump defects: or autoimmune autonomic neuropathy:

CFS/ME

• ME/CFS/none (as diagnosed by doctor or selfdiagnosis according to the criteria: ME, CFS):
• Since when:
• Anything you regard in hindsight as likely first signs before developing CFS/ME:
• Sudden or slow onset? Suspected onset trigger (viral/bacterial/blood transfusion/mold in a building/...):
• Malaise after physical exertion:
• Malaise after mental exertion (difficult thinking/meetings/socialising/stress/...):

 

[KatieUK]

@Lolinda - where do you send the questionnaire answers to? I've just joined the forum but don't seem to be able to message you directly.

 

[Lolinda]

Hi Katie,

thanks for your interest.

I abandoned all this. While people were interested, it was only wanting to profit from it. No one wanted to contribute (those few who did were friends and people I knew before, whom I asked for a feedback on PM. Contributions were linguistic, which I do need a lot and is very valuable. But no one from all the pots-affected readers of these threads cared to do the hard work of digging into the details). You see an accurate image of the situation:
- if you look at the three threads were people get ready results of my research, you see a lot of activity:
treatment
test
research bacgrounds / which antobodies cause what
- If you look into this thread here, calling for work, you see big emptyness. (and in the very first post, you see several lines of mine asking for contributions from people... all unanswered.)

I do not call PR a "community" any more. It probably was, a while ago, but many people with a positive attitude and willingness to contribute have left together with Cort to the new website (which is however not addressing pots). His enthusiasm and spirit of contribution is lacking here.

I learned that contributing to the common good on PR is pointless. I better invest my time into solving my issues myself. Infact, it took only 2 weeks to get rid of my Celltrend antibodies, they are now in the healthy range, and I improved my pots. I will sparingly check back to PR, if at all.

There are many researchers here on PR, who could have contributed on a detailed level of content. But one doesnt need to be a researcher to find and read papers in mostly plain English such as for example this one, and start thinking about autoimmunity, vitamin D and EBV or whatever else. There is a saying "The one who wants achieves more than the one who can" (translated from German).

Thanks once more for your interest.

 

[sb4]

I will sparingly check back to PR, if at all.

I have gained a lot of useful information from your posts, so your hard work is appreciated by me and I'm sure many others.

 

[Hutan]

@Lolinda, pleases don't be disheartened. I found your threads interesting. We as a community move slowly, by necessity. Probably not many have yet investigated their antibodies with the Celltrend test. Those few who have may well have been busy with the holiday season and the aftermath.

It's good to hear that you have reduced your Celltrend antibody levels to within normal ranges and are feeling better. If you would like to share more details about that, I and I am sure many others too will be interested to hear.

Best wishes

 

[KatieUK]

@Lolinda thanks for your reply - I am sending you a private message

 

[Lolinda]

Thanks for your kind words, @Hutan @sb4 and @KatieUK

Probably not many have yet investigated their antibodies with the Celltrend test.

Sounds tempting what you write! But the opposite is true: I know frow Celltrend that after I posted the three threads, their previously little used tests were in huge demand. They were just swamped with dozens of testing requests from allover the world. This is what really broke me: Not one, not one single of all these people came that for example "I went to google scholar and found this and that paper saying that not oniy vitamin D an A deficiencies, as you write, but also vitamin X and Y were associated with some autoimmune disease. So lets add this then also to the questionnaire!".

We as a community move slowly, by necessity.

Indeed. I would never ever criticise single people, because one can have valid reasons to do nothing such as brain fog. But from several dozens of people tested ( many of them bed-bound with POTS, thus having nothing else to do than read stuff on their mobile phones) nobody tell me that there isn't a single person who can read a bit on google scholar as to what causes autoimmunity, so what to add to the above list of questions.

I have published the questionnaire above. Its public.It is almost ready. It costed me weeks (bed bound most of the day! on my mobile phone!) to read over hundred papers to assemble the questions in the list above. Now, @Hutan, I want to see if this is a "community" as you call it: I want to see if there is a single person stepping in and saying "I can take it over, will read more, will add more, will finalize it". If anyone wants to continue my work, I am happy to dump here all the research papers on which the above questionnaire-in-preparation is based. The purpose of the questionnaire is as simple as this: if we see that many people positive on the Celltrend panel have condition X, say, SIBO, then there is a chance that these connect. Dig further here! Read more papers on how SIBO connects to autoimmunity, etc.

It's good to hear that you have reduced your Celltrend antibody levels to within normal ranges and are feeling better. If you would like to share more details about that, I and I am sure many others too will be interested to hear.

Unfortunately, I do not know. This is exactly why it is important to have many people answering, so we see some trends emerging from many answers.. My approach was simply to "throw everything at it" and retest frequently. And then it happened... I will go through my notes and make a list of all the things I tried in the time when the big change happened and then make a last post. Then you will see if this is a "community". I predict, people will answer only on the level of "thank you" and "I try it too, great info" and "for me it worked / did not work", and "for me sthg else worked..." and "here I post my Celltrend results" etc. But no one will step in and systematise things, make sure that people do not only post soiutions and failures , but also post under which medical circumstances these things did or did not work, etc.Because one thing is certain about autoimmunity: there is high individual variety and no solution fits all. And those "solutions" that purport to work for all such as IVIG, immunabsorption or ritux, not only risk serious side effects but the antibodies will often reproduce as the root-cause of the disease is neither identified nor treated. It can be as simple as EBV in one person or vitamin D deficiency in another ... we just do not know.

 

[eljefe19]

I just had my cell trend test done, as well as SIBO and 21 other things. I will report back with results

 

[sb4]

Maybe people might haven't read this thread or forgot about it.

The problem is for me and I suspect others is that we have so many things we are reading / testing and so little energy. I posted a few ideas in the other thread and just bookmarked this one until I get the test done (next week) so didn't read.

I am currently trying to learn quantum biology and so this is priority for me first. As for vitamin A and D, both of these are solar vitamins and I think light could be BIG for autoimmunity. B cells absorb at 260nm...

 

[Jackie M]

I think interesting additions would be:
Positive for any other antibodies?
When first positive for antibodies in relation to when first I'll?
C3, C4 (complement) levels:
Any current autoimmune diagnoses?
Have any autoimmune treatments been attempted, if so, which symptoms were helped (or not)?