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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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Search results

  1. S

    Help -- positive result on Advanced Laboratory Testing test

    Hello. I am sick since 1992 when lyme was misdiagnosed for other diseases. Lyme "The great imitator" . I don't know Mr. Edwards scientific or educational background. What I do know is we do need a better test for Lyme. I did eventually have positive PCR lyme tests multiple times but my...
  2. S

    Anyone develop a severe trigeminal neuralgia(teeth pain)?

    Thanks picante. When I was very sick years ago with whatever attacked me my son came home and gave me the chicken pox which put me in the hospital for 5 days. I feel like I have shingles many days. My skin is very sore to touch in certain neurological patterns such as on legs where L5 nerves...
  3. S

    Noise sensitivity getting worse...

    I can relate to noise. sometimes when not feeling well just driving if a truck passes me feel like reaching up and covering my ears. Not a good idea though. Traveling on the train to NYC as soon as entering the tunnel the air pressure changes and I grab my ears from the pain. I tried ear...
  4. S

    Equilbrant feels like helping me

    Thank you. I am a low tech man in a high tech world. Do I just look for my old post and add to it? Do I do this by editing the post or create new post. Not sure thanks
  5. S

    Equilbrant feels like helping me

    Thanks for the info. Gonna keep on it. It is doing something to me. I am not sure if I had Lyme or an enterovirus. I did drink from a documented contaminated water source just before getting ill. Funny two days ago had severe neurological symptoms malaise and what felt like brain...
  6. S

    Equilbrant feels like helping me

    Thanks halcyon. If I still have lyme disease which is what Drs. first thought perhaps this is kicking in my immune system to fight it. Herxheimer die offs flare symptoms severely. Thats one thought. The other is perhaps the enterovirus is dying off also. No matter will keep trying this and...
  7. S

    Equilbrant feels like helping me

    Yes because I have no other choices open to me and I did notice some improvement for a few days. I will not go more than 2 a day. Perhaps it is a herxheimer type reaction I am getting. I may wake up tomorrow much better. Will post tomorrow. Thanks
  8. S

    Equilbrant feels like helping me

    My good friend who i used to fish with ate sushi every day for years. He developed numbness in his face. His mercury levels were extremely high. He was on a chelating agent for a few months and he is fine now. It never made him weak. He is a letter carrier. I thought I had some kind of...
  9. S

    Equilbrant feels like helping me

    I posted earlier that I felt equilbrant was making me better. I woke up feeling good this morning. Slept good, no pain killer for joint pain to get dressed. It felt great to feel almost normal. I ate breakfast, took my calcium/vitamin D and multi and another dose of equilbrant. I just did a...
  10. S

    Equilbrant feels like helping me

    Good morning. I am not sure If I am having one of those days you could count on one hand for a whole year or this product is working. Up to 2 a day over a ten day period and I notice I am sleeping better at night and longer. I was able to get dressed without having to take a pain killer...
  11. S

    Antiviral hit me like a sledge hammer yesterday

    Not sure if had Lyme disease or still have it but from your picture I was about your age with my second son just born and I came down with some kind of virus or lyme and have never recuperated. What ever it is started with my intestinal tract and worked its way into my central nervous system...
  12. S

    Antiviral hit me like a sledge hammer yesterday

    Do you have a good infectious disease doctor that is open minded to look for all this stuff? Who helped you get the blood work to see if you had IGG to the bug
  13. S

    Antiviral hit me like a sledge hammer yesterday

    I will do that. I don't think they even knew about enteroviruses 22 years ago. They initially found inflammation in my stomach, mild inflammation throughout entire small intestine and severe inflammation at the terminal ileum and my colon. Stupid me drank from a roadside well up in the...
  14. S

    Antiviral hit me like a sledge hammer yesterday

    They initially looked for yersinia but did not find it. Can that make you really chronically ill?
  15. S

    Feel awful after naps

    Mornings have been the worse for me since I first got sick in 1992. I still wake up early usually between 5 and 6 and it takes 2-3 hours to feel somewhat better. Sometimes I just don't get better and am sick and on the couch all day. Sometimes by evening symptoms abate. On an antiviral now...
  16. S

    Antiviral hit me like a sledge hammer yesterday

    I had a whole year of intravenous antibiotics because the Dr. thought I had lyme. Then I had penicillin shots twice a week for about 4 months, then oral antibiotics. Don't think I had lyme because never got better like I saw so many patients get better and feel great with these drugs. It felt...
  17. S

    Antiviral hit me like a sledge hammer yesterday

    And the good news today I feel like a human being again. Much less joint pain and on and on. It is all related to one thing whatever that may be. I am hoping yesterday was just side affects of my body fighting off some enterovirus or some kind of herxheimer from dead virus or whatever...
  18. S

    All symptoms related somehow

    Thanks but have tried just about every diet out there over the past 22 years. From wheat grass juice to gluten free to vegetable diet. Did not make one bit of difference with me. I am so sick today feel like I am dying. Tremors, extremely weak, barely able to take a shower, chronic dull...
  19. S

    All symptoms related somehow

    I don't know if anyone ever gets a day where all symptoms for no reason at least that I can figure out abate dramatically or just go away and you feel like a normal healthy human being. It is so frustrating that I get days during a year that I can count on one hand when the following happens...
  20. S

    Milk intolerance severe

    There was a test I took in a gasteroenterologist office to see how sensitive you are to milk. They asked me to drink a large glass of whole milk and after 10 minutes or so I had to blow into these mylar like balloons. They then read the gas expelled in some kind of meter. They told me that I...
  21. S

    What does intolerance to hot and cold mean?

    Good morning everyone. I wish I could say it is a good morning but with my me/cfs mornings are always the worse. Anyone else feel this way? I understand that heat intolerance at least in my case I get excessive sweating even on a moderately warm day with humidity many times. This occurs just...
  22. S

    Anyone develop a severe trigeminal neuralgia(teeth pain)?

    About 3-4 months into this disease with what I now feel was a virus attacking me I developed the most painful trigeminal neuralgia. I could not even bit down on a piece of meat without getting stabbing pains in teeth. Hot and cold liquids caused severe pain. One time at the dentist with a very...
  23. S

    Gallbladder: did you have issues with it during your CFS journey?

    HI. I too have had since I first got ill years ago multiple HIDA scans showing 15% function. No stones or sludge or thickening of the gallbladder walls on ct scan. My personal feeling is that since I had such severe neurological symptoms with what I now think was an enterovirus the gallbladder...
  24. S

    Anyone sickness start like this?

    Thanks I did not know that. I will call them and see if they still have biopsies.
  25. S

    Anyone sickness start like this?

    If I get another biopsy I will have samples sent there. Thanks.
  26. S

    Anyone sickness start like this?

    Thanks for the info. However me/cfs may be triggered by an enterovirus. The clinical trials at Stanford University show promising results for patients being treated with antiviral meds. Dr. Chai's research has found 80% of cfs patients that had their stomachs biopsied had dna/rna for...
  27. S

    Anyone sickness start like this?

    Yes enterovirus is found in contaminated water. Humans are the hosts for this disease and it is found in polluted water with human contamination. I am not sure if animals carry it also. I had read somewhere on the net that there were clusters of this disease traced back to some polluted lakes...