• Welcome to Phoenix Rising!

    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. pcmenten

    The Onset Poll

    For the record: the onset of my chronic symptoms occurred when I contracted HSV1 at age 62.
  2. pcmenten

    Sudden increase in flu-like symptoms -- how to treat?

    Hi Laura. I'm sorry to hear about your troubles. As a diagnostic, I'd be curious to know how antivirals such as Valtrex and Valcyte make you feel. The flu-like symptoms could well be a 'sub-clinical' reactivation of a virus such as EBV, HSV1/2, or HHV6. I know that Valtrex is well tolerated, so...
  3. pcmenten

    numbness

    Hi Isobel. I hope this finds you in good health. I'm also hoping you can give us an update - any new developments? - Paul
  4. pcmenten

    Peripheral Neuropathy

    I hope you are feeling much better. I'm also hoping we can get an update on how you're doing. Good luck! - Paul
  5. pcmenten

    Constant nerve tingling ,hands legs ,head..

    I'm hoping that Righthammer is able to see this message and give us an update on the state of his/her health. I'm also hoping that Righthammer is feeling much better. - Paul
  6. pcmenten

    New Alzheimer’s Study - Guess What Was Hanging Out In Brain Tissues - HHV-6A & HHV-7

    This hit the headlines in 2015. http://www.einstein.yu.edu/news/releases/1076/experimental-herpes-vaccine-upends-traditional-approach-and-shows-promise/ It looks like one of the strategies that herpes viruses use to defeat immune response is to provide a 'decoy' target for antigens. Attached...
  7. pcmenten

    New Alzheimer’s Study - Guess What Was Hanging Out In Brain Tissues - HHV-6A & HHV-7

    My understanding of how the HHV-1 virus works is that it infects the glial cells that protect neurons. It demyelinates them, leaving behind the amyloid plaques that were part of the myelin sheath that was protecting the neuron. Once it reaches the brain, it goes into neurons and becomes dormant...
  8. pcmenten

    Rituximab Phase III - Negative result

    I do an overnight 13 hour fast for weight management; I don't have ME/CFS but I have a family member whose ill.What about trying an overnight 13/14 hour overnight fast i.e.on a daily basis? I rather think that a 24-36 hour fast twice a week, with a 16 hour daily fast, is likely much more...
  9. pcmenten

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    Have yoiu noticed that EBV seems to be showing up in a lot of places? I've heard that it shows up in Alzheimer's, breast cancer, MS, lymphoma, and CF. I'm sure I've missed others. Paul
  10. pcmenten

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    I keep seeing references to the involvement of macrophages in health outcomes. Examples: a new avenue of pain treatment involves blocking macrophages. MS treatment includes Rituximab, which lowers white blood cell counts. EBV is an infection of white blood cells. Turns them into zombies...
  11. pcmenten

    Rituximab Phase III - Negative result

    So, my understanding of Rituximab is that it is intended to lower white blood cell count. Because EBV infects these cells, there has been hope that it would relieve ME/CFS symptoms. It's also my understanding that fasting will lower white blood cell counts. I have tried fasting and I've felt...
  12. pcmenten

    Article: Chronic Fatigue Syndrome (CFS) associated with Epstein-Barr virus infection.

    Wow, okay! The mention of IBS-D caught my attention. Thank for writing this up.
  13. pcmenten

    IgM when relapsing/reactivating Lyme&co?

    It's my understanding that IgM will rise when the infection recurs. I'm curious about which IgG bands showed positive with your test results (if you've been tested.)
  14. pcmenten

    Viral titer levels change in months

    I have read in more than one place that the levels of viral titers, EBV NA, for example, move slowly. I don't know what qualifies as moving slowly but I can report that my titers move significantly in months. And from what I have experienced, they are reflective of my symptoms at the time of...
  15. pcmenten

    Lyme results confusion

    Update: I had taken a one-month course of Doxycycline with Valtrex back in the March timeframe. The doctor discontinued the medication with a plan to re-test in two months. My health declined, especially fatigue and cognitive symptoms. I was restarted on Doxycycline June 28. It took more than...
  16. pcmenten

    Partial remission for a day

    Odd coincidence; I'm having a day of remission. Feels incredible to feel normal. I have been taking Doxycycline for Lyme since June 28. I use Saccharomyces boulardii yeast to stabilize my gut. Yesterday I resumed taking Valtrex for EBV. Presto! Remission (for a day). We'll see how long it...
  17. pcmenten

    Partial remission for a day

    Another possibility is that the immune system is somehow being disabled and allowing a smoldering infection to flare. In the case of those of us who seem to have multiple smoldering infections, it results in being chronically sick with a minimal immune response. When we hit upon a combination of...
  18. pcmenten

    Partial remission for a day

    lansoprazole is a proton pump inhibitor The anesthetic was likely lidocaine. Question for Adam; were the fillings in your upper jaw? - Paul
  19. pcmenten

    Partial remission for a day

    The binary nature of remission that some are seeing implies that there is a malfunction in the endocrine system. Some research is showing an involvement in the mitochondria. Short answer to your question; yes, we will find a 'cure', and it will likely involve mitochondrial function. But I also...
  20. pcmenten

    Partial remission for a day

    It is so interesting to hear of the sudden remission of symptoms. I didn't quite have a 'light switch' experience, but I did have a dramatic improvement in cognitive symptoms over a course of three days when I first experimented with Doxycycline. This happened early this year. By the third day...
  21. pcmenten

    Partial remission for a day

    (The above quote was in reply to my suggestion that he might have an issue with Candida albicans.) I had long-running issues with my gut. I got some improvement with use of Saccharomyces boulardii. Then I tried using remedies such as Candex and Candibactrin and got more improvement. I have more...
  22. pcmenten

    Partial remission for a day

    Candida. Try taking a Candida remedy on an empty stomach, alternating with Saccharomyces boulardii when you eat.
  23. pcmenten

    Recurrent cold like virus and downstream effects

    Have you considered a possible enterovirus infection? Search for the Enterovirus Foundation website and scan the list of symptoms.
  24. pcmenten

    Do I have it or Not?

    Please get tested for HSV1, HSV2, EBV, CMV, and HHV6. Don't take no for an answer. My initial HSV1 infection at age 62 was kicking my a$$, and might have lead to reactivation of EBV and HHV6. HHV6 requires a different antiviral than HSV and EBV. Reach out to @Hip , he is quite knowledgeable...
  25. pcmenten

    Coxsackievirus test by ArminLabs

    Thank you, Hip. I knew you had posted this elsewhere and I did a few quick searches, but bailed out and resorted to a direct question. I truly appreciate all the information you provide on these forums.
  26. pcmenten

    Coxsackievirus test by ArminLabs

    @Hip or anybody who can answer, a question; where do I get tested for coxsackie/enterovirus? What other advice relating to this testing can you offer? I've done a little searching on this forum, and I'll do more, but, of course, I'm feeling a little brain-foggy at the moment. Thanks, Paul
  27. pcmenten

    My chronically elevated EBV antibodies

    @bspg That does NOT look normal!!! The IgM titers should have dropped long ago. The fact that they are still elevated seems like a big red flag.
  28. pcmenten

    Lyme results confusion

    Another update; I returned to clinic to get retested for EBV and HHV6. I had finished a one-month course of antibiotics (doxycycline) about two months ago. Most symptoms have returned, although the severity of POTS is much less this time. I'm sick. I was written up at work for poor performance...
  29. pcmenten

    What induced your ME?

    I've read several accounts of people have had 'flu' prior to the onset of CFS symptoms. I, too, thought I had a flu when I contracted HSV1 - flu-like symptoms and a sore throat that would not quit. By coincidence, I had been tested for HSV1 and HSV2 just prior to coming down with these...
  30. pcmenten

    Food Coma / Postprandial exhaustion / Postprandial somnolence

    @pattismith In the last year or two, I started to experience this post-prandial malaise. I recently tried using an OTC remedy for Candida albicans (Candex, Candibactrin). It has resolved the malaise and vastly improved my gut function, but I've lost my appetite. Note that I'm back on an...