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

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  1. Hugo

    Wet sensation

    Interesting. Ive had several other problems of this nature. Like a strange nerve sensation because of a pressure from a rather heavy book I was reading, it lasted several days and was really awkward and nearly impossible to explain.
  2. Hugo

    Wet sensation

    Ive had something similair, but just one day and I never had it again. But someone I know have it all the time. This person has MS so if you have more symptoms of neurological nature that could be MS I would recommend going to a neurologist and rule that out.
  3. Hugo

    Psychologists using forum posts for research papers promoting psych theories of ME

    Yes its highly unethical to say the least.
  4. Hugo

    Documentary: Undercover in German Lyme Clinics

    Possible the german clinic but hardly the diagnose chronic lyme. I myself got lyme (proven) after a tickbite. I already had ME and I got worse and worse after the initial treatment of two weeks of antibiotics. Im still not better, im not alone. It is far more complicated than just antibiotic...
  5. Hugo

    drugs bad effect to liver, kidney, etc

    Regarding liver problems I would recommend taking milk thistle. I been on a toon of meds recently (mostly antibiotics) and milk thistle seems to work atleast what I can see from labtests. Also short breaks can be enough for the liver (three weeks) and identify what meds that cause liver...
  6. Hugo

    Driving with ME/CFS

    Thats a good point and Im sorry you had to give it up. Drinking and driving could be even worse though than cognitive impairments since I would guess that your judgement regarding risk when driving (like speed, overtaking etc) when your drunk isnt to good. Also I wonder how many have your good...
  7. Hugo

    Driving with ME/CFS

    Interesting, I would guess it could be somewhat less energy used in automatic. Ive only driven a manual when I had ME but I would like to try a automatic. Well if one would like to wait a while I guess we soon will have cars that drives for us. That would be something ;-)
  8. Hugo

    Driving with ME/CFS

    In that case I would think thats a way for you to get more mobility and freedom so I would go for it. Getting a drivers license is in itself kind of a uplifting thing for the harsh life of one with ME.
  9. Hugo

    Driving with ME/CFS

    I dont have a car but I drive sometimes. It depends on how your health is overall and your health the day you drive, how long and what kind of traffic (rural or city). In my experience its a rather easy activity if its not heavy city traffic, I drive stick aswell and I dont find that hard for...
  10. Hugo

    Low-dose naltrexone (LDN) - how's it working for you?

    It is? I didnt know that.. I dont take sleep meds now but I have earlier in the treatment. Aha sorry I saw it was a question.. read it to fast.
  11. Hugo

    Blood Pressure Going Very High With Almost No Effort

    What did your heart rate and blood pressure measure to on the tilt table test?
  12. Hugo

    Yoga

    Im doing yoga once a week. Its yoga with a mindfullness focus but it still have some standing exercises and that is problematic for my POTS. But I can do this exersises sitting down instead. Its several medidation on one session and the main one is a yoga nidra. Before Ive also done a light...
  13. Hugo

    New research on treating migraines with ketone supplementation

    I done a ketogenic diet for a year or so and then continued with a much less strict version of it. It could be somehting to the migraine study since I didnt have that during that time but I have it now (once a week). But I think that is more about the lyme I got a couple of years ago. I think...
  14. Hugo

    Change the committee and stick to your assignment

    Sad news indeed. Doesnt surpise me that the commite wasnt exactly neutral. Ive seen this again and again, would it been a court of law he would not been alowed to be a part of an advisory committe since he is so clearly bias. Ive heard about the situation in Netherlands and its not good, it...
  15. Hugo

    Do you feel something moving in your ears?

    Its very common with sinusproblems for ME and also tonsills problems. That could cause several problems with ears. In my own experience tooth problems could cause problems with my ears. But not like something was moving in my ears. What could cause this problems is to my knowledge wax. I had...
  16. Hugo

    Vitamin C & adrenals

    Yes I understand that, but I meant if it worsened the adrenal fatigue. Good to know it didnt and that it may have made you better. Did Lam thought liposomal C was a good supplement? Ive read about a doctor in Denmark (his rather controversial there) who uses high doses of IV C-vitamin in...
  17. Hugo

    Vitamin C & adrenals

    Im doing that aswell (liposomal c) and I been a lot better, but cant be sure its because of liposomal c since Im taking several supplements and medicins. Do you mean it caused a possible adrenal fatigue later on?
  18. Hugo

    Vitamin C & adrenals

    Im curious of what kind of what kind of sublingual hydroxo you use? I also would like to try that (its not as common as methyl or cyano)
  19. Hugo

    Auto-immune (paleo) - losing some weight but feel lower energy, - comments ?

    Yes, I eat a lot of olive oil its the best of all fat to use as an energy source in my experience. I like ghee and coconout oil but just in small amounts.
  20. Hugo

    Auto-immune (paleo) - losing some weight but feel lower energy, - comments ?

    Ive done some version of paleo before, and in my experience my energy returned after a while on it. But nowadays I eat carbs aswell, like potatoes and so on and its better for me. Cant you eat eggs, is that high on carbs? I had a lot of eggs during that time.
  21. Hugo

    Products that make your life easier?

    This version may be a little better if one has balance problems. http://www.bikemania.biz/rmb-libert-e-hybrid-electric-tricycle.html
  22. Hugo

    Products that make your life easier?

    True, all traffic could be dangerous with brainfog. I dont have any problems with it though and for example I can drive a car without any problems. Strangely enough though my brainfog could act out in other circumstanses. Like cognitive tasks like mathematics or logic problems or social...
  23. Hugo

    Tickplex a new test for Lyme and Co-infection

    Yes if Tickplex would detect an antibody reaction on the cyst form I guess it would find chronic cases. Better still if this Elisa can detect antigens of an cystform it will find the bacteria itself. Elisa is generally to my knowledge not as good at finding the bacteria itself like an PCR, but...
  24. Hugo

    Tickplex a new test for Lyme and Co-infection

    As I understand it can track chronic cases because its more sensitive and would need less antibodies. But I dont know to much about this test. I contacted armin labs and at that time they said that the big tickplex test (20 pathogens as I understand it) will come in a month from mid juni when...
  25. Hugo

    Lyme questions

    I do think most are rather reliable when its Elisa or Elispot. I dont know about Tickplex since its new but my doctor where I live seems to like it, he knows the researchers so his not neutral though. The CD57 is something I would not trust to much, I think its a to broad indicator and could...
  26. Hugo

    Lyme questions

    I think its mostly the NK-cell cd57 test that one could be sceptical about with the german tests (arminlabs). The Elispot test is usually not used in screening (diagnose) but I think its reliable since its commonly used in research. A better alternative could possible be Tickplex. I think its...
  27. Hugo

    181, New painkiller. An opiod without addictive qualities

    Yes as Hixxy are saying in her post just because it doesnt have the "high" doesnt mean it doesnt have other problems like dependence and withdrawal. But the effect opiods have on dopamine is generally all of this so I would guess its better than a standard opiod. More testing is needed ofcourse.
  28. Hugo

    181, New painkiller. An opiod without addictive qualities

    Thats true but I guess also you have to follow the patients over time. Placebo generally go down over time.
  29. Hugo

    DIY Fecal Transplant...would you try it?

    ;-) Sure but I guess the discussion is now (or recent history) not then, at one time they thought mummypowder was the best treatment for everything. Still it shows how times are changing. No I wouldnt try it for something else than gut problems. The one I know that got the treatment had severe...
  30. Hugo

    DIY Fecal Transplant...would you try it?

    True, but I never heard any health reasons to try smoking. And this is more of an uknown than smoking that is very well documented.