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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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Search results

  1. M

    Supplementation of pyruvat risky?

    Thanks for the feedback, @Judee. Yeha, he is figuring out what to do next because some test results came in and among other things pyruvate is lowered. So he asked himself if a supplementation could be a good idea because he remembered that it used to work in the nano needle. So he wondered...
  2. M

    Supplementation of pyruvat risky?

    Hi all, after @Martin aka paused||M.E. is in a very severe condition again, I ask for him, whether the supplementation of pyruvate is risky. In Martin's blood a lower pyruvate level was measured; lactate is normal. @Martin aka paused||M.E. told me that Ron mentioned 2007 that it worked in the...
  3. M

    Starting Copaxone

    The hospital is at the same time stressful and helpful. Of course the noise and light and so is a problem, but if you are in a quite room for months, the isolation is also a big problem. Generally the staff is aware of the situation but they are changing many times and you have to tell them how...
  4. M

    Starting Copaxone

    Martin is still in hospital. Docs are figuring out if a stomach tube is necessary. Fortunately there is one doctor who is very interested in Martins situation. We give her all those studies and background information. I hope he can participate here again very soon. @Yuno No, Martin stopped...
  5. M

    Starting Copaxone

    Martin is in hospital and gets a stomach tube tomorrow due to his ongoing problem to swallow liquid. In the last days he was a little bit more vital because he wasn‘t forced to use his energy for swallowing. We hope that the stomach tube helps him to get more energy in the next days...
  6. M

    Starting Copaxone

    No, to find out more would have been the next step. But they told us that you can order the standard one and after you get the results there is still the possibility to upgrade to the extended or complete UDx
  7. M

    Starting Copaxone

    I‘m sorry. Really thought I have already answered. The standard UDx Core is 1500$ (including brief statement), UDx extended is 2500$ and UDx Complete is 5000$ (full scale biochemical interpretation including telephone consultation).
  8. M

    Starting Copaxone

    Yes, we wanted to run the Meta UDx, but there would be another 1,5k EUR for transportation what made us stop the whole process. Best regards Michael
  9. M

    Starting Copaxone

    Martin haven‘t started taking copaxone yet. It takes longer than expected to proceed the Metabolon test. Due to his hospital stay in the next week we will postpone the whole Copaxone thing. I will give an update as soon as Martin starts with Copaxone.
  10. M

    Starting Copaxone

    Hi Ben, I hope your situation improved in the last 2 weeks. Have you find something out? Martin postponed the beginning of taking copaxone because he first wants to send some blood to Metabolon to test the metabolism stuff and avoid false results due to taking copaxone. Hope we can manage...
  11. M

    Is it all histamine ?

    @MartinDH is taking H1-Antihistamines for 1,5 weeks now, starting with 5mg and the current dosis of 15mg per day. I read that it would be good not to start with H1,H2 and stabilzers at the same time. Until now he has no significant problems with H1. Do you think it is better to wait another few...
  12. M

    Now very severe HELP

    I'm really sorry to answer so late. To many things to handle at the same time. Currently we have no access to those specialists. We are focussing on LDN (which doesn't seem to work) and the Chiari/CCI-Problem. The specialist who should do the traction test checked Martin during the first visit...
  13. M

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi @jeff_w ... great to hear that you are constantly improving and also thanks for your incredible effort to share your knowledge. You have already been linked in another Thread. In that thread I am writing for @MartinDH who is in a very severe condition (100% bedbound, no communication possible...
  14. M

    Now very severe HELP

    After reading through the whole thread, you are totally right. We should try the "soft" things like Trendelenburg position, Traction Test, Neck stretching device or a basic neck brace just to see how it works. An MRI ist no alternative at the moment. I summarized everything I found and forwarded...
  15. M

    Now very severe HELP

    I have never heard anything about these things. After reading some minutes, I am not sure what to do without sending him to hospital that is still a thing he doesn't want to. If "elevating his feet" doesn't work we have the same situation which happened many times in the last weeks: Martin...
  16. M

    Now very severe HELP

    @Lisa108 yes, I was talking about Marburg. We hope that some contacts can speed up the process. Thanks for the idea with the communication folder, but Martin is also very light sensitive. I am not really sure if it's the best to rest totally and do nothing (as @Silencio pointed out that he...
  17. M

    Now very severe HELP

    There is no improvement at all regarding Martins condition :( After 4 weeks we stopped azithromycin, carnitine and d-ribose. Nothing has changed in the last weeks. The communication is on a minimum (Martin has a button to press which is linked to a bell and then he only writes down a letter or a...
  18. M

    Now very severe HELP

    Basically, nothing essential has improved for Martin. With the help of beta-blockers his POTS could be improved. In addition, his day-night rhythm has normalized in recent days. Prof. Scheibenbogen answered. She suggested 1L saline (implemented, was not positive on the first day), cortisone...
  19. M

    Now very severe HELP

    Only a saliva test for the daily cortisol. Another headword for the list that has to been discussed with his doc. Try to avoid to think about such a path. Somebody in this forum also told us that rest doesn't only come from outside but also from inside. I think that is really important although...
  20. M

    Now very severe HELP

    @Sundancer and @NotThisGuy . Thank you! I really don't know why I haven't thought about that solution. And thanks sundancer for your offer. That's really nice that you would do that!!! But then there shouldn't be a problem to buy Thorne ourselves.
  21. M

    Now very severe HELP

    Finally it is important that there will be an improvement (almost) regardless of the timeline. I hope that your situation will continue to improve. It's hard to accept that there is a possibility that improvements can take years.
  22. M

    Now very severe HELP

    We start with 1.0mg and we will document the dosage and changes every day to get a feeling for the right dosis. Mainly antibodies. Martins doc will discuss that with Prof. Scheibenbogen. Side fact: The import of Thorne is partly blocked by customs in germany. We can't figure out how to deal...
  23. M

    Now very severe HELP

    Martins condition still haven't improved. We startet with LDN yesterday. All test results were negative except his problem with the gut (low/no lactobacillus and bifido), high GPT and some lymphozytes are slighly to high/to low. We also tested for histamine in the blood and the DAO activity...
  24. M

    Now very severe HELP

    Thank you all. We have already contacted Prof. Scheibenbogen and she told us that it is possible to discuss some issues with Martins doc. But on top it would be great to have other experts, too. All these people have limited time of course and perhaps we can activate other experts to get...
  25. M

    Now very severe HELP

    Unfortunately no. Perhaps you can say that there is a stabilisation on a very bad level. We are still doing some testings. The common infections with viruses and bacteria are negativ. But there are still a few left. Currently we are mainly focusing on his gut issues (lactobacillus/bifido were...
  26. M

    Now very severe HELP

    Hi Kurt, I'm very thankful for your hint. Good to hear that you could get out of that horrible situation to a more stable one. Unfortunately Martin is still in a very severe condition, but some test results came in and they indicate some possible infections with viruses and bacteria. In...
  27. M

    Now very severe HELP

    Hi all, unfortunately I can't be that active on the forum due to Martin's severe condition and other time consuming issues, but again I want to thank you all for your input. On Friday we moved Martin to his parental home with a patient ambulance. It was necessary due to different aspects (his...
  28. M

    Now very severe HELP

    Thank you all again and again! Those up and downs are really difficult to handle. He doesn't tolerate any food fortunately "only" means that he is crashing often after eating or drinking. But we got fluid and nutritions into him and fortunately it stabilized today a little bit in comparison to...
  29. M

    Now very severe HELP

    In his current condition he doesn't tolerate any food. Sometimes he ist just crashing after drinking water. We are thinking about parenteral nutrition. Do you think that could be a good idea for a few days and look how it works?
  30. M

    Now very severe HELP

    Thanks @Lisa108 . We tried to start with D-Ribose right after yor message. Martin had some left somewhere in his collection of medicine and supplements. Unfortunately his condition is still worsening after he started eating some pureed potatos and carrots in the last days in addition to the...