Lolinda
J'aime nager dans le froid style Wim Hof.. 🏊♀️🙃
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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:
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.
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.
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!)
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/
- 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!
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