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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. Patrick*

    Chronic Constipation - Gilbert's Syndrome, Bile Acids, Milk, Elobixibat

    I'me late to this thread, but adding my 2 cents now: I have Gilbert's Syndrome and chronic constipation resulting in SIBO. I've known about Gilbert's well before my descent into chronic health issues in 2011, but I never developed a theory regarding how GS fit into the puzzle, so I never...
  2. Patrick*

    Enhancing Coffee enemas

    Cream and sugar. kidding ;)
  3. Patrick*

    Tongue Symptoms

    Yes, I have had that (worse in the past) and I currently have it right now. I believe that it is a form of peripheral neuropathy for me. When it comes on for me, it often comes with pain in my fingertips and toes, and to a lesser extent, pain in my hands and feet---all signs of PN. It could...
  4. Patrick*

    Active EBV?

    Anana, I recently went through a long period of trying to determine if I really have active EBV because tests repeatedly showed that I had an active infection. My doctors couldn't agree on whether these test results were significant or errors. You said you've been lurking, so maybe you've...
  5. Patrick*

    Which doctor is right about chronic EBV?

    I'm still 50/50. Dr. Lerner's theory seems equally as plausible as the others mentioned here who say that the titers are not due to an active infection. The one thing I couldn't get past when considering if the test results were false positives was: what is causing consistent false positives...
  6. Patrick*

    Which doctor is right about chronic EBV?

    My Quest lab results only list it generally as <200. Stupid Quest.
  7. Patrick*

    Which doctor is right about chronic EBV?

    These are very helpful responses, thank you all. @Galixie, what your virologist said makes a lot of sense to me. @ljimbo423 That is really interesting. I wonder if the findings re IgG supertiters are applicable to IgM as well. @Ema Thanks for asking about symptoms. I forgot to mention...
  8. Patrick*

    Which doctor is right about chronic EBV?

    I'm at a complete loss whether to treat chronic EBV, and I have two doctors recommending different things. I don't know which one to believe, so I'm hoping PR will have some opinions. If you make it through this long explanation, thank you! Background: Since getting ME in 2011, I've always...
  9. Patrick*

    Low Dose vs High Dose Antivirals

    I've had an active EBV infection (IgM very high) for at least the last 10 months. Before that, previous tests were always IgG positive only - albeit very high titers. At first, my doctor started me on 500 mg 2x/day. We tested again and there was almost no change. We went up to 1G 2x/day - I...
  10. Patrick*

    uBiome results

    Alicec, thank you very much for that information. I am on a paleo-ish diet with a lot of vegetables and meat and, at the time the sample was collected, also a lot of nuts. (I have since eliminated nuts). Here are my top 8 genera (the only 8 genera that are over 1%): Bacteroides: 54.60%...
  11. Patrick*

    uBiome results

    Thinktank, I did take antibiotics - at least once per year since first getting ME/CFS in 2011. The longest stretch was for about 3 months in 2014. I have only collected one sample, once.
  12. Patrick*

    uBiome results

    I just received my uBiome results. Bacteroidetes: 66.13% Firmicutes: 26.25% Verrucomicrobia: 6.91% Proteobacteria: 0.61% Actinobacteria: 0.10% On the genus level, I have no measurable bifidobacterium or lactobaccilus -- although I understand from alicec that the latter isn't too important...
  13. Patrick*

    Fingers and hands sensitive?

    Sorry to revive a zombie thread from 7 years ago, but I wanted to say that I am experiencing this too. My hands and fingers have all of a sudden become really really sore and sensitive, to the point where it hurts to type or to wash my hands or a million other regular daily tasks. Does this go...
  14. Patrick*

    I've mostly recovered, but I'm not quite 100% yet. Is the methylation cycle the key?

    Hi. I'm sure you know, there are different approaches to methylation. Many people here have found success with methylation protocols involving various doses and types of B12. Personally, after 2-3 years of experimenting with different forms and doses of B12 and methylation, I was never able to...
  15. Patrick*

    Tamiflu for flu?

    I took Tamiflu recently and my opinion is that it probably did reduce the length and severity of my flu. I checked here with PR before taking the first dose and, naturally, there were mixed opinions, but nothing dissuaded me from trying it (cautiously.) Before I caught it, the flu had been...
  16. Patrick*

    Doctors Views on Things Written about on PR

    I've never gotten anywhere mentioning ME/CFS or any of the so-called alternative medicine treatments we deal with here in PR. That will almost always work against you. But it's funny because if I merely mention various components of ME/CFS, they take me very seriously. For instance, when I...
  17. Patrick*

    Equilibrant

    I am taking Equilibrant, 6 tabs/day per Dr. Chia's recommendation. I started with 1 pill. Each time I increased the dose, I had flu-like symptoms for 3 or 4 days. There are about 2 dozen threads on Equilibrant on this site. This one is pretty comprehensive if you have time to do some...
  18. Patrick*

    Next iOS update will have nighttime amber-shift included

    For those of us working on sleep hygiene, and for those who know that the blue glow of our devices shuts down melatonin: the next iOS update coming out soon will include a setting that shifts your screen to amber light at night...
  19. Patrick*

    Help interpreting IGeneX Lyme test results - what does this mean?

    Sorry to revive an old thread, but I received my IGenix results and they are the same as yours. IgM is positive by BOTH IGenix standards and CDC/NYS standards. But IgG was negative under both standards. Babesia was negative. Did not get tested for any other co-infections. I had a prior...
  20. Patrick*

    Take Prednisone for one day only?

    Side note, I had to chuckle at the image of your muscle-bound avatar combined with a post defending steroids. lol
  21. Patrick*

    Take Prednisone for one day only?

    Thank you all for the feedback. I considered caffeine and/or a small dose of Adderall, but the problem is that both of those tend to increase my HR and give me a dry mouth. In some circumstances that's OK, but I've found in court those are not good things. Nonetheless, I appreciate those...
  22. Patrick*

    Take Prednisone for one day only?

    Thank you Adreno and ukxmrv for the valuable insights.
  23. Patrick*

    Take Prednisone for one day only?

    I have a dilemma. I am one of those rare ME patients who's functionality is high enough for the time being that I maintain a job (barely). I'm an attorney. Ever since getting ME in 2011, I've been lucky with the timing of trials. I've never had a trial that coincided with a crash. I've been...
  24. Patrick*

    NBC report on CFS and the new dx

    I just emailed NBC News' email address contact.nbcnews@nbcuni.com. This is the email address specifically set aside "To report an error or comment on NBCNews.com or an NBC News program." I encourage others to do so. Although there were many problems with the report, I think the most...
  25. Patrick*

    Supraphysiological dose Fluoxetine Enteroviruses?

    Hi Halcyon. The dose is 20mg, 1x per day. I haven't started this trial yet but will soon...
  26. Patrick*

    Equilibrant

    I have typically posted my write-ups from Dr. Chia appointments in this thread as I know there's some interest in his theories. This latest appointment didn't have much to do with Equillibrant, so sorry for taking this a little off topic. He wants me to try Interferon and Prozac as a sort of...
  27. Patrick*

    Dr Sudhir Gupta at UCI.. I need info about him.

    Bump. I'd like to read people's responses to this too since I live somewhat near UCI
  28. Patrick*

    Low/High Potassium Symptoms

    I've had hypokalemia several times, as confirmed by labs, due to methylation protocols and possibly genetic predisposition. For me it comes with really bad brain fog, leg pain and numbness, and tachycardia.
  29. Patrick*

    Cancer On Top Of CFS! :(

    That is absolutely heartbreaking to read. I am so sorry for your cancer diagnosis in addition to ME/CFS.
  30. Patrick*

    Highest Rated Treatments on HealClick

    I agree with that. I'd rather see more of this kind of data collection and apply my own judgment as to how seriously to take it, than not have anyone attempting to collect this type of data at all. With the current number of respondents to that survey, I don't think it's worth much at this...