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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. cyclamen

    Post infectious cervical instability, variants of the Grisel Syndrome, a link to post-infectious CCI?

    I wonder if treatment of these infections with fluorchinolons plays a role.
  2. cyclamen

    My ME is in remission

    Hi Jen, I‘m so happy for You!!! Hope You are able to answer two questions for me: Did You wear a neck brace before the fusion and if, did You have the impression it made you feel somehow better? Had you done testing for at1, alpha, beta and m Antibodies before and if you did, have you been...
  3. cyclamen

    More and more autoimmunity

    Sorry Gingergirl, I can’t. But I expect more from this group of researchers in the future.
  4. cyclamen

    More and more autoimmunity

    Don’t take my words for the truth, it is how I understood it. For to say it is or will be a biomarker for autoimmune , POTS this one study was much to small , it has to get confirmed with more and bigger studies. It does not represent autoimmunity but increases the possibility.
  5. cyclamen

    More and more autoimmunity

    To the contrary. Lower levels might lead the way to peripheral Autoimunity - and the levelof this Furin is lower as longer POTS persists.
  6. cyclamen

    Is there consens among specialists regarding IVIG in CFS-patients?

    You are right about that E.R.D.E. is testing less muscarinic aabs, m2 is the most important one. But You can’t say, that their test is less thorough. They could give numbers too, but decided against it because higher numbers, = more aabs in the blood, do not indicate a worse case of ME or POTS...
  7. cyclamen

    Is there consens among specialists regarding IVIG in CFS-patients?

    Oh Gingergrrl, I made a mistake in writing the Acronym. It is CIDP (I will edit it in my other Posting). Because of CFS you will not get IVIG. There was only one small study from Scheibenbogen https://en.m.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy Yes there are two...
  8. cyclamen

    Is there consens among specialists regarding IVIG in CFS-patients?

    Hi Gingergrrl, Krankenkasse is just health insurance, without specification it’s the public one - private Krankenkasse ist private health insurance You need to have a doctor diagnosing you with autoimmun POTS and SFN(!), because it is seen as equivalent to CIDP. Autoantibodies can be tested...
  9. cyclamen

    Is there consens among specialists regarding IVIG in CFS-patients?

    Hello Markus, at the moment it seems to be possible in Germany to receive IVIG and to get it payed by Krankenkasse if You suffer also from autoimmun POTS and Small Fiber Neuropathy.
  10. cyclamen

    Cyclophosphamide

  11. cyclamen

    Cyclophosphamide

    Hi badback - as a doctor, besides having a try on all kinds of treatments, you had probably all kinds of tests. Did nothing show up on the event recorder (heart) or skin biopsies or xxx? Maybe you have one of the structural damages leading to POTS, taking a longer time to heal before you will be...
  12. cyclamen

    Do we know who Jennifer Brea's doctor is?

    I can only recommend for POTS: Dr Maier at http://www.ans-ambulanz.de/ (They have an autonomic labor) Prof. Dr Haubrich at http://fa-zd.de/facharzt-zentrum-duesseldorf/unsere-aerzte/neurologie-christina-haubrich.html
  13. cyclamen

    Do we know who Jennifer Brea's doctor is?

    Joh, my ❤️ goes out to You, I`m sorry You are not well enough to do some doctor hopping for some symptoms. And of course I understand Your reasons and it is a shame that You have to pay this hefty price.
  14. cyclamen

    Do we know who Jennifer Brea's doctor is?

    Ηi Joh I do not know how well or sick You are, but did You try to tackle the POTS or the sleeping problem alone, by going to a new doctor, without telling him about the rest of your health baggage? In Germany at the moment I would avoid a diagnosis of CFS from a regular doc at almost all costs...
  15. cyclamen

    Heart rates spikes while sleeping

    This is a very interesting slide show about decreased sleep quality in POTS, especially hart rate spikes: https://de.slideshare.net/mobile/DukeHeartCenter/5-xavier-preudhomme-potspresentation4151
  16. cyclamen

    What lab work is used to detect excess norepinephrine in POTS?

    The way I understand it is that with POTS you need to have blood drawn two times, first in rest, laying down for 30 minutes and the second one after 10 minutes of standing. The analyzing for norepinephrine in the lab is done just like the normal catecholamines test. This way the difference of...
  17. cyclamen

    What lab work is used to detect excess norepinephrine in POTS?

    I had this test - first you need to get a needle in and secured in a way it can be uses do draw blood without needing to hurt you a second time. Than You have to lay down for half an hour before blood is drawn for the first time. After that you get up and stand for 10 minutes before having your...
  18. cyclamen

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    Germany - und this was the rare cardiologist, who has known about POTS. This was the reason I went there.
  19. cyclamen

    Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

    I hope the cardiologist don`t fall for it. My last encounter with a cardiologist regarding POTS ended with her upbeat goog bye: "Just enjoy life and forget about your symptoms, they will be gone sooner than you think!"
  20. cyclamen

    What are some natural supplements for POTS?

    Yes, there are special salts containing potassium along with sodium. For example the pan salt from Finnland.
  21. cyclamen

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    Thank You Joh and Jo Best, no it is not my case, but from a friend who doesn't understand english well enough. And until now, she doesn't want to bother the mother with the two sick children.
  22. cyclamen

    Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

    Joh, are You aware of any lawyer which can be of help in a situation in wich the parents lose the medical custody for their child. Because the child is sick with ME and can not attend school? Integrative Homeschooling is not provided because ME is no reason for not attending school?
  23. cyclamen

    Examples of how psychological causes have been postulated for many medical conditions

    Shell Shock
  24. cyclamen

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    Sadly, You are correct here.
  25. cyclamen

    Peter White gets set to speak at Swiss Re Insurance Medicine Summit 2017

    All of this gets already done - at least by many german doctors-
  26. cyclamen

    Wild Horses - new film on ME/CFS is short listed for prize at Cannes Fi

    And exactly this latter leap is made by leading British (and Danish, and German and ....) psychologists... and two of three doctors, physiotherapeuts, psychologists we consulted and some neighbors and even from a few friends .... Not because they have any proof of it, no, it is already the...
  27. cyclamen

    POTS/Heart rate monitors.....confused!

    Treatment for POTS helpes my daughter a lot. It does not make her healthy, but much more stable. The heart rate monitoring validates her feeling and helpes with the fine tuning of medication. But I know from others, that not everyone can handle it. Some might get very anxious about numbers or...
  28. cyclamen

    Wild Horses - new film on ME/CFS is short listed for prize at Cannes Fi

    I have nothing against the cute little horse, nothing against comic moments, even in films about chronically sick children. I understand fully the wish to just run away, to be silly, to push your luck - I know this dream well myself. I also do not think, there is an automatic need to be...
  29. cyclamen

    Wild Horses - new film on ME/CFS is short listed for prize at Cannes Fi

    My troubles are, that in the ME Modell for children from Chalder et friends, the fear of the mother will hinder the recovery of the child. If the child at the end relapses, the mother's worries will be to blame. So, with an end like this, the narrative of Chalder will be confirmed. Don't...
  30. cyclamen

    Wild Horses - new film on ME/CFS is short listed for prize at Cannes Fi

    Thank you Dr Shepherd for copying the statement from the filmmaker Rory A Stewart for me. Still, I can't help it. This repetition of the meme, the overprotective mum, will hurt families with chronically sick children, despite good intentions. Maybe the film is much better than the trailer or...