CFS, POTS, OH: treatment for adrenergic & muscarinic receptor antibodies

[Lolinda]

In POTS, OH and CFS, antibodies against adrenergic and muscarinic receptors can contribute to the disease by binding to the receptor and cause it to malfunction. See also here. If you tested positive for these, then this thread is all about treatment: doctors, ideas, questions and new research about treatment. This is all very new stuff, so there is nothing proven and established yet and all these treatments may have hard side effects. But being sick has also hard effects, so I will try treatment.

There are separate threads for:

• Labs that test for these antibodies
• Pathomechanisms: how the antibodies contribute to POTS, OH or CFS
• People who already got tested post their results and their symptoms so we can learn from it (this thread is yet to be created!)

If you need a plain explanation what these antibodies are about, start with the section "Simple introduction" here.

Wonder why I create separate threads for these? I just hate it to browse through threads of 30 pages talking about everything on earth often not related to the thread title. Takes hours. So this is my little initiative to have small threads that answer exactly one specific question. You need some information and you get exactly that. I also support a lot @Hip 's idea for a clever search that finds the most relevant posts.


List of doctors

I called Celltrend (who do the antibody testing), if they can recommend doctors. If you see them, please let others profit from sharing your experiences.

• POTS, USA: Janet E. Smith MD, CRC. Sierra Internal Medicine Research Department. 926 Incline Way #260; Incline Village, NV 89451. Tel.: 775-832-0989 Ext 111. Mail: jsmith@sierrainternalmed.com. Fax: 775-831-4817
• POTS, Germany: Prof. Bieger. Schwerpunkte - Stressmedizin Infektionen - Neuroimmunologie - Prävention. Bavaria-Haus 6. Stock (L4M). Augustenstr. 10, 80333 München Tel.: +4989-5432170 www.dr-bieger.de Generally, every doctor in Germany speaking speaks English. Professors doubly so.
• CFS, Germany: Dr. med. Christina von Köckritz
  Sakrower Landstraße 29, 14089 Berlin
  Tel. +4930-3658117 http://dr-v-koeckritz.de/chronische-muedigkeit/

Further chances:

• At the bottom of the lab list, you find a list of researchers in UK, USA and Germany. I think it is a good idea to contact any of them for help.

List of experimental treatment ideas

See this as a yet incomplete brainstorming list and not as any recommendation. Contributions are more than welcome! I made several times the experience, that it is absolutely worth to inform myself of options before approaching any doctor. So I can judge if they are up-to-date and knowledgeable. I want to trust myself on doctors who know what they do.

• "In patients responding to rituximab high pretreatment autoantibodies declined after treatment."
  
• Plasmapheresis: http://forums.phoenixrising.me/inde...y-at-berlin-charite-prof-scheibenbogen.44341/ - thanks to @Freddy for all these infos. This treatment is to remove the autoantibodies from the blood. This has actually some permanent treatment chance, because the production of autoantibodies in believed to be a self-perpetuating process: http://forums.phoenixrising.me/index.php?threads/antibodies-to-ß-adrenergic-and-muscarinic-cholinergic-receptors-in-patients-with-cfs.40109/page-20#post-709096 If that is true, then removing them once has a chance to remove the problem for quite a while or even permanently.... Sounds nice
• IvIg - intravenous immunglobulin: While this therapy was originally used to replenish immunglobulins in people who have a deficiency, it is also used in autoimmune diseases. I am not aware of a study in which it is used for excessive adrenergic or muscarinic antibodies. Thanks to @Gingergrrl for contributing the idea!
  
• One could try low dose beta blockers in case that one has activating B1 / B2 antibodies. Low dose beta blockers helped some people with POTS , without knowing if they have beta receptor antibodies or not. And there is some research on this, here and here.
• A few years ago, Prof Kem appeared confident in this video to be on a good way to a "decoy protein". That is a protein which neutralizes the antibodies by binding to them. Thanks to @Research 1st for giving me the link. I did not find anything on this idea since. Still, if you dont mind travelling to Oklahoma, it might be worth to ask him if you can see him for some treatment... - and let us know!

 

[Gingergrrl]

Wonder why I ceate separate threads for these? I just hate it to browse through threads of 30 pages talking about everything on earth often not related to the thread title. Takes hours. So this is my little initiative to have small threads that answer exactly one specific question.

@Lolinda Thank you so much for doing this and for tagging me into the thread. I am so appreciative of the other stuff that you sent me and feel guilty that I am so slow to read through it! So many people have sent me articles and links on autoantibodies, paraneoplastic syndromes, IVIG, etc, that it is an embarrassment of riches (I hope that is the right phrase and that it translates correctly for other countries)! I am so far behind with reading everything but I want to read everything and take it all in and don't want people to stop sending me stuff either! I just need to find a day or two that I can focus on reading it all and hoped to do it before my IVIG this Sat but don't think it will be possible.

Plasmapheresis: http://forums.phoenixrising.me/inde...y-at-berlin-charite-prof-scheibenbogen.44341/ This is to remove the autoantibodies from the blood. This has actually some permanent treatment chance, because the production of autoantibodies in believed to be a self-perpetuating process:

I have not been able to find any doctor in my state who has ever done plasmapheresis before or will order it for me. Literally every single one (my main doc, MCAS doc, Neuro, Cardio, etc) felt that IVIG was the better choice for me than PP so for now this is what I am doing. But if I ever find a way to try PP, I would love to do it. It appears to be common in Europe and Asia but rare in the US.

IvIg - intravenous immunglobulin: While this therapy was originally used to replenish immunglobulins in people who have a deficiency, it is also used in autoimmune diseases. I am not aware of a study in which it is used for excessive adrenergic or muscarinic antibodies. Thanks to @Gingergrrl for contributing the idea!

Am happy to have contributed something! I have lots of articles re: IVIG and autoimmunity but nothing specifically re: the adrenergic or muscarinic auto abs.

One could try low dose beta blockers in case that one has activating B1 / B2 antibodies. Low dose beta blockers helped some people with POTS , without knowing if they have beta receptor antibodies or not. And there is some research on this, here and here.

Low dose Atenolol works very well for me and is the only med that controls my POTS. Have tried CCB, Mestinon, IV saline and all were a disaster.

Call Celltrend

I have not yet called Cell Trend but am close to giving up that I will get a response with the info that I need via e-mail. They do not seem to be set up for overseas patients and I had hoped to obtain a sheet with all of the tests that they offer so my doctor can choose which ones he wants. I had also hoped to learn the prices of the tests and the instructions to give the lab who is drawing the blood but no one has gotten back to me beyond telling me to ship with Fedex Intl. I am not sure if there are three tests, four tests, or maybe even more and if I am sending blood, I want to do as many as possible and I want the lab to prepare the blood correctly for overseas shipping but they have not been able to provide me any info!

 

[Lolinda]

Update: All the treatment chances listed in the beginning of this thread have serious side effects. So before starting any of them, I first try to collect simple and harmless treatments one can do at home. In fact, it seems that I found two: I noticed improvement in my POTS issues from the following two treatments:

• agp-choline
• alpha lipoic acid

These have nothing to do directly with adrenergic or muscarinic receptor antibodies. But they help indirectly by circumventing the issues: Both can help to make the heart pump more blood volume. If this happens, then standing up is relying less on vasoconstriction! And vasoconstriction is what is impaired if one has elevated adrenergic receptor antibodies. Equally, if the heart pumps more volume, then no need to beat more frequently.

Now, how do choline and ALA help the heart to pump more volume? And what did I do exactly and what did I really achieve? Let me start with the latter:

• First, I tried transdermal choline. All the details on what I did are summarized here. Starting at very low doses, I meanwhile slowly slowly increased the dosage to 450mg / day. I noticed my heart beating more forcefully in a pleasant way and a small betterment of my POTS. Btw my feelings have meanwhle been objectively proven: My bifascial block is gone! I had that over many years, two times measured by ECG. Now, I asked for a new ECG and happy happy: no more bifascial block!! So apparently choline improved sthg in cardiac conduction... I would be curious to know what choline does there.
• Recently, I started ALA. First I overdid (2x200mg / day) -> poor sleep. Then I took only 200mg 1x / day in the early morning, transdermally. I consider it important to take it transdermally. If 60% of supplemental choline is eaten by gut bacteria, then I can well imagine that it will be similar for ALA. No need to feed my enemies (I have some SIBO). Effect: Again a small but noticeable improvement in POTS.

Now, for ALA, I can offer some theory as to how this can work:
First, it is mentioned in various publications that it increases intracellular glutathione. For example here:
http://www.ncbi.nlm.nih.gov/pubmed/10826559
"...dietary supplementation of an endogenous fatty acid, alpha-lipoic acid, another thiol compound that is known to increase tissue cysteine and glutathione..."
Then here are publications by Rich van Konynenburg, which make the link to increased cardiac output:
http://forums.phoenixrising.me/inde...-van-konynenburg-parts-1-7.11488/#post-198773
"Low cardiac output (145): According to this Hypothesis, this occurs because depletion of reduced glutathione in the heart muscle cells lowers the rate of production of ATP, as in the skeletal muscle cells. This produces diastolic dysfunction as observed by Cheney (146, 147)."
And:
"Orthostatic hypotension and orthostatic tachycardia (149): According to this Hypothesis, these occur because of low blood volume, low cardiac output and HPA axis blunting (See Diabetes insipidus, Low cardiac output, and HPA axis blunting, above.)."

- Take the above as first ideas. Critique, additions and personal experiences are more than welcome!

 

[Lolinda]

A FIRST SMALL LIST OF HARMLESS STUFF TO TRY AGAINST AUTOIMMUNITY

I collected a few things that some believe to be effective against autoimmunity in general. I collected stuff generally considered harmless and good for health. They have nothing specifically to do with adrenergic or muscarinic antibodies, I would try the same against any other autoimmune issues. I am now in the process of trying some and will retest soon @Celltrend if antibody levels start to go down.

Butyrate
Feeds Treg cells, which are responsible to dampen excessive immunity. Butyrate you naturally get from:
- 3-4% of butter are butyrate
- Beneficial gut microbes produce it in the colon. Eat more food containing resistant starch. I have SIBO and I cant do this, because then I would feed my SIBO.
Butyrate levels in blood are to my knowledge not yet testable as of today, but butyrate levels in stool are tested by Ganzimmun, Germany (accept samples from allover the world. The test is damn cheap, 30 something Euros.)

Autoimmune paleo diet
See Chris Kresser: "no grains, no dairy, no legumes, no industrial seed oils, no alcohol, and so on. ... additionally eliminating eggs, nightshades (e.g. potatoes, tomatoes, eggplant, peppers), nuts and seeds. Every time you eat a food that triggers an immune response, such as gluten, dairy, eggs, etc., your body will produce antibodies that incite an attack on your immune system for days, weeks, even months if the intake was significant enough."

Fasting
increases cortisone and that may dampen autoimmunity
This is not an option for me, as I am struggling to gain weight. But I want to further learn if increasing cortisone/cortisol has merit against autoimmunity, because mine is at the lowest normal level in 24h urine.

LDN
Some people on DINET report (for example here and here) that LDN helped their autoimmune issues. I want to learn if there is any research on this or at least a credible mechanism.

ALA
There is some research that it helps against autoimmunity, but also case reports that it causes autoimmunity in people with specific genetical susceptibilities, for example here (600mg ALA/day). I definitively feel better on 200mg ALA per day, transdermally. It gives me a wonderful peaceful happy focussed mind. Before, I tried 2x200mg per day which produced sleep issues. I guess it further lowered my blood sugar which is anywise lowish on my very low carb paleo diet. - But reading now about a risk to not only treat but also cause autoimmunity, I first want to learn more in order to judge risk vs benefit (and most of all, retest to see if there is any change in antibody levels during the time so far). Hippocrates was a wise guy to say: "First, cause no harm!"

Uric acid / molybdenum
Avoid low values of uric acid and check if enough molybdenum in the diet: This research shows that people low on uric acid have more often MS, which is usually considered autoimmune. Certainly, you don't want to shoot too high with uric acid, because then you get gout. Uric acid production needs molybdenum. I just noticed that my very low carb paleo diet is almost devoid of molybdenum: I learned here and here that molybdenum is all in grains, lentils and beans. Surprisingly strong reactions from a first try with 50% rda tell me that there might be a possibility that I am extremely low on it, but also that I need to go slow. Replenishing deficiency sounds reasonable to me. Wether the above speculation about autoimmunity has any merit, I will try and retest. My uric acid was low normal a while ago, so that would fit.

If you have further ideas or any studies, mechanisms or experiences that help to judge the chance of the above, pls post here to the benefit of all.

 

[Gingergrrl]

@Lolinda, I absolutely have to read ALL of your posts on this topic and all of your PM's and put together some questions that I want to ask you. You have been so generous with your time to put all of these separate threads together on the Cell Trends tests and these autoantibodies and I need to read it all now that I know I am positive for 7 of the 9 and figure out what to do.

I just sent an e-mail to the assistant of one of the doctors you mentioned (no idea if I will hear back) to see if he does Skype consults with patients or their doctors. I have to learn more about this topic and am certain these antibodies play a big role in my case (although I have some other antibodies that play a big role, too, so it is very challenging to sort it all out). Mostly I just want you to know how much I appreciate all of your info and plan to make the time to really read through it all. Thanks again for doing all of this.

ETA: The e-mail was just returned to me as "undeliverable" so on to Plan B as usual...

 

[Gondwanaland]

200mg LDN per day

200mg? AFAIK the rocommended dose to treat autoimmunity is up to 4mg.

 

[Lolinda]

Thank you! I corrected it above. ( I did a copy-paste mistake in which the end of the LDN section and the beginning of the ALA section got lost and then rewrote it from German to English and utter bullshit came out... )

 

[Gondwanaland]

I want to learn if there is any research on this or at least a credible mechanism.

In theory it increases endorphines, I know I would feel better with more endorphines... But apparently it doesn't work like that for everyone.

 

[CFS_for_19_years]

Butyrate
Feeds Treg cells, which are responsible to dampen excessive immunity. Butyrate you naturally get from:
- 3-4% of butter are butyrate
- Beneficial gut microbes produce it in the colon. Eat more food containing resistant starch. I have SIBO and I cant do this, because then I would feed my SIBO.
Butyrate levels in blood are to my knowledge not yet testable as of today, but butyrate levels in stool are tested by Ganzimmun, Germany (accept samples from world wide. The test is damn cheap, 30 something Euros.)

Butyric acid was one of the first remedies that a naturopath started me on early in my illness. I'm contemplating taking it again to help with gut issues. I think this was the brand:
https://www.pureformulas.com/butyriccalmag-180-capsules-by-biotics-research.html

This looks more economical:
https://www.amazon.com/BodyBio-Butyrate-Calcium-Magnesium-Capsules/dp/B0016NHCGA

If I recall correctly, it smells awful.

 

[Lolinda]

@CFS_for_19_years Interesting! How much did you take? What were your benefits? What were the recommendations of your naturopath? Any side effects?

I am so interested!! In fact, butyrate (from butter) could be what helped me over so many years and protected me from getting worse:
- Just think of it: 100g butter has 3-4g butyrate. 2 pills of the brand linked above have 1g alltogether.
- I ate copious amounts of butter since all the time I am sick. I easily eat a 150g a day, but at least 50 or 100g. (and if anyone thinks that this is unhealthy: all that BS about cholesterol in food is debunked meanwhile and there are even estimations how many lives would be saved if margarine and omega6-rich vegetable oils would be outlawed and people would return to traditional fats)
- Nobody told me to do so. I felt a clear urge from my body.
- I noticed literally a hundred times the following pattern: I had mysterious flu-like bouts that felt like inflammation, but nobody could tell me what it was. On inflammation, my appetite for butter went very high. When inflammation calmed down, my appetite for butter normalised. Today I know I have autoimmune POTS and neuropathy.
- My autoimmune POTS got worse during a time when I believed advice that I should eat less butter. I have to double check, but this could also be the time when I had to leave resistant starch (->gut bacteria-> butyrate) because of SIBO.
- Interesting that you write about the awful smell. Now, while I love butter, I always refuse eating butter at room temperatures. It must be the cold butter from the fridge. I want no other food and no drink cold. Just think of it: everything loses taste and smell when cold.

Maybe butyrate is the answer to all the above.

 

[CFS_for_19_years]

@CFS_for_19_years Interesting! How much did you take? What were your benefits? What were the recommendations of your naturopath? Any side effects?

Butyrate is something I took about 20 years ago, so I don't remember how much I took. I didn't get any explanation from my naturopath. I don't think I had any side effects. It was one of the first things she ever prescribed for me.

When I saw her I clearly had ME/CFS along with chronic sinusitis, low-grade fever, sore throat, all the yucky symptoms that one normally has in the first years. She prescribed a lot of different natural remedies that eventually helped me overcome the chronic sinusitis.

 

[edawg81]

Not sure if this has been mentioned but Dr. Kem's new paper is out now:

https://www.ncbi.nlm.nih.gov/pubmed/27702852
http://europace.oxfordjournals.org/content/early/2016/10/04/europace.euw154.long

 

[Lolinda]

much appreciated @edawg81 ! I will put it right into the first post on the POTS & CFS adrenergic & muscarinic receptor antibodies research thread, because this paper deserves to be there, supporting that indeed A1, B1 and B2 are causing POTS. It will take a while, because I accumulate several changes to disturb admins only 1 time for opening an old post as editable again.

 

[sb4]

The paper seems to be suggesting that people with pots but no fainting may have these autoantibodies but fainters won't. Have I got that right? So hyper pots should ask for autoantibodies blood tests.

 

[Gingergrrl]

The paper seems to be suggesting that people with pots but no fainting may have these autoantibodies but fainters won't. Have I got that right? So hyper pots should ask for autoantibodies blood tests.

I read the papers and was confused about this myself but I have seven of the antibodies and have never fainted. So it would match in my own case. I have many other autoantibodies so am not surprised that my POTS is autoimmune, too. I am researching possible doctors (including David Kem) who I might be able to consult with but there are very few worldwide who know about these particular antibodies. It's really a shame.

 

[Sidereal]

The paper seems to be suggesting that people with pots but no fainting may have these autoantibodies but fainters won't. Have I got that right? So hyper pots should ask for autoantibodies blood tests.

Not quite. Occasional faining in POTS was considered to have a different mechanism and symptom presentation than the control group with vasovagal syncope. The paper merely shows that those antibodies are found in POTS but not another form of dysautonomia (vasovagal syncope) but it's not about fainting per se.

 

[Sidereal]

Not sure if this has been mentioned but Dr. Kem's new paper is out now:

https://www.ncbi.nlm.nih.gov/pubmed/27702852
http://europace.oxfordjournals.org/content/early/2016/10/04/europace.euw154.long

This paper is very interesting. It suggests a causative role for these antibodies in tachycardia.

I wish the German-Norwegian collabo which found adrenergic (and muscarinic) antibodies in a subset of ME/CFS had measured their autonomic function using TTT and questionnaires. I bet the people with ME/CFS + POTS were the ones with the antibodies but there is no way to know.

 

[sb4]

If one has the autoantibodies,would strengthening the immune system through things like colloidal silver, UV-B, etc, help or would it increase autoantibody activity.

 

[Gingergrrl]

If one has the autoantibodies,would strengthening the immune system through things like colloidal silver, UV-B, etc, help or would it increase autoantibody activity.

My uneducated guess is that there would be no connection and the auto Ab's would need an immune modulator or suppressant to be affected (ex: steroids, IVIG, RTX, etc).

 

[sb4]

Mirtazapine and beta blockers for A1 B1 B2
In theory mirtazapine would increase norepinephrine which activates A1 B1 B2, and it blocks A2. So if you take, say, propanolol it will block the raise in B1/2 from Mirtazapine and autoantibodies, and the autoantibodies that decrease A1 will be countered by the extra norepinephrine from mirtazapine, bringing balance to the force.

My pots was REALLY bad a few months back then improved slightly with first propanalol and then mirtazapine.

A1 Autoantibodies
These would result in:
less saliva
less sweating
more vasodilation
pale skin
poor function in gastric sphincter muscles
salt reabsorption problems in kidneys
etc


One thing confusing me is my symptoms improve in the cold and other things , suggesting vasoconstriction issues, however I dont seem to experience blood pooling in the legs. Why is this?