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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. kolowesi

    Lyme, too?

    This is so interesting! Thank you! I will have to think on it. Most things I can take, a few I already take, and some I am unfamiliar with. Love the liposomal technique using an ultrasonic jewelry cleaner. Just was watching bulletproof executive Dave Asprey pointg out that antibiotics are...
  2. kolowesi

    AIR HUNGER and incessant yawning

    Someone told me something came over from China. Sorry to be so vague. When smoke is over my location because of fields being burned in Central America, I have those same symptoms. Well, not specifically the flu-like, but the incessant yawning and some near panic attacks.
  3. kolowesi

    Parvovirus B19 in an Icosahedral Nutshell

    Parvo B-19 found in German heart biopsies http://jcm.asm.org/content/47/1/106.full The HHV-6 Foundation used to have an article showing which different viruses were found in heart biopsies from live CFS patients. Sorry I can't find it. Parvo B19 was the most common. Many people had multiple...
  4. kolowesi

    Parvovirus B19 in an Icosahedral Nutshell

    Re taking doxycycline It was a lifesaver for many years for me, then suddenly seemed to make me worse. There was an article in the Townsend Letter http://www.townsendletter.com/July2010/sapi0710.html Check out the pictures of the bloom in the round body form of Lyme. I am sure that's what...
  5. kolowesi

    Parvovirus B19 in an Icosahedral Nutshell

    Wow, that's scary high. Hope you get something to address that. I take either Swanson or Vitacost Colostrum with IgG 40%. There is a more expensive brand, whose name I can't remember, but these feel like they help. Can't tell you why, but I trust the feeling. My body wants it.
  6. kolowesi

    Parvovirus B19 in an Icosahedral Nutshell

    Great article! I love the picture, what a beauty! And listing out the chronology of the studies is so helpful. I might have a datapoint. In 2004 (infected early 1998), I saw a doc who tested for Parvo B19, I think an IgG antibody blood test. My number was 7+ with normal being < 1. After some...
  7. kolowesi

    Borrelia – In the Lymelight

    Great article. I satisfy criteria for ME/CFS and for Lyme. Testing issues: 1. I had less than 1/4 normal absolute B cell count when tested at 18 months. Wouldn't this affect an antibody test? 2. My blood cells blow up starting at 2 hours. (Babesia?) Wouldn't this affect any test requiring...
  8. kolowesi

    Outrageous stomach pain

    longbow Is the pain worse at any particular time, e.g. waking up at 3 a.m.? How would you describe it, burning, aching, pulsing, spasming? Many of us have enterovirus in our stomach tissues. I was able to pay for a test using some slides made from an antrum biopsy done during an EGD...
  9. kolowesi

    Could XMRV Be Transmitted by Vaccine?

    Thanks, Slayadragon. My cat became ill after a rabies vaccination. She lived 9 more years, but was never the same. She had immune abnormalities and some lesions the vets thought were herpes, but she had no "herpes inclusion bodies." I knew something was wrong with her reaction to the vaccine, a...
  10. kolowesi

    Cognitive-Behavioral Therapy: Has Anyone Here Benefited at All?

    Slayadragon preponderance of CBT articles I am truly shocked. And horrified. I'm not sure if my therapy is considered CBT. I started going to a psychotherapist about month 4 of my illness, as a friend told me my problems were likely emotional. Very early on, the therapist told me I would...
  11. kolowesi

    Ciguatera Toxin in CFS

    I meant to thank you, too, Hip. I think this is a big clue.
  12. kolowesi

    Ciguatera Toxin in CFS

    richvank dannybex Thanks Danny & Rich! I was positive (2005?) at the level of a person with actual ciguatera poisoning; a level lower than the average CFS patient, just high enough to be diagnostic for CFS. I never got the RNase-L test and wonder whether it corresponds. Around the same...
  13. kolowesi

    Did we do something to deserve this disease? Sin? Karma?

    are we to blame for being ill? Great thread, I enjoyed reading it. A doctor told me that since the advent of antibiotics and other "modern" medicines, many people are kept alive who would have died in early childhood in previous generations. It seems likely that I would have died, and if that...
  14. kolowesi

    VIP Dx Culture Test Poll For A LATENT Infection

    Thanks so much, Rafael. Good luck to all.
  15. kolowesi

    Pinecone extract

    Katja, I used it for about a month in 2007. I was on valcyte at the time for CMV, EBV and HHV-6. I had a huge autoimmune reaction, plus my HHV-6 titer went from 1:640 to 1:10,240. I had added Del-Immune V at the same time, but I believe it was the Immune Extra that caused such a big reaction...
  16. kolowesi

    My AZT + RAL Trial

    Hi, Sue, I can't understand why the doc won't give you anything for tachycardia. Is this the infectious disease doc? Tachycardia is exhausting. Plus isn't there a danger of the blood pooling in the heart and a clot forming (I hope I'm mixed up about that, maybe that only happens with...
  17. kolowesi

    i got a dx of lupus yesterday and also very low growth hormone on labs

    andreamarie lupus and CFS Hi, and I think I'm happy for you! If you have it, you may as well know. And as you mentioned, lupus gets a lot more respect than some other diagnoses. Several years ago, I had the malar rash, painful joints, hair loss, speckled pattern ANA, and very dry eyes (every...
  18. kolowesi

    VIP Dx Culture Test Poll For A LATENT Infection

    I just got my test results back and I tested negative. I first requested a test kit in November, and they contacted me in March. Then it took about 4-5 weeks to get results, which went to my doctor. My test just says "Negative." Since early on I had greatly reduced counts of B and T cells, and...
  19. kolowesi

    Has anybody tried Hydrocortisone therapy?

    Great thread! I am currently on 10 mg time-release compounded hydrocortisone. I pour about 1/4 of the capsule out, so say 7.5 mg. I also take 75 mcg compounded T3. Before correcting subclinical hypothyroid (TSH btn 2.5 and 4), hydrocortisone made me feel terrible. I wonder if anyone can...
  20. kolowesi

    Weight Training

    Thanks everyone for all the info. It is really, really helpful. I have had a big psychological block about this. And of course endless advice that all I need to do is exercise. Wonko, somehow I didn't realize I was doing GET, but of course, that's what Medicare demands when you do PT. The...
  21. kolowesi

    Weight Training

    I tried physical therapy last summer. I wore a pulse monitor on my finger and never went into aeorbic territory. I started at 10 reps with a 2 lb weight. assorted conditioning exercises for legs, arms, abdomen. I went to 2 sessions a week, and most were 45 minutes. I relapsed at the 3rd week...
  22. kolowesi

    How not to find Viral RNA The Dutch approach

    old and frozen blood Hi Ladybug, I just re-listened to Dr. Peterson's presentation. I believe he said that the plasma from a very old frozen sample contained virion which could infect cell lines. Plasma not containing actual cells. Perhaps this is the explanation? I have been very...
  23. kolowesi

    Information on the Science CFS Cohort - Inclusion of Cancer Patients?

    Anika cancer patients in the Science study There is a lot more detail in Dr. Dan Peterson's testimony to the CFSAC meeting in 2009. You probably listened to this already, but just in case, here are some youtube links: http://www.youtube.com/watch?v=SA-o6QR5rK0...
  24. kolowesi

    TRAZODONE user's. I need some advice

    juniemarie article about sleep meds http://www.aboutmecfs.org/Trt/TrtSleepPrescrip.aspx
  25. kolowesi

    TRAZODONE user's. I need some advice

    sleep meds Hi, Juniemarie, My doctor prescribed both clonazepam and trazadone. I take 0.5 clonazepam (generic klonopin) and 50 mg trazadone. I also take 2 mg melatonin, 200 mg oral progesterone and 4 mg tizanidine (generic zanaflex). This cocktail knocks me out and keeps me asleep...
  26. kolowesi

    Prayers for those that are sick

    prayer list Great idea. Sometimes I just add a generic for all who have this, but it's good to have certain people to remember. I would like to add Victoria (Vicky), if it is all right with her. I've been thinking of her all day. She mentioned the possibility of being forced into retirement...
  27. kolowesi

    XMRV VIPdx Positive for Culture

    culture vs PCR Hi, Joey, I think I am happy for you. I am happy that if you have to have XMRV, at least you didn't get a false negative. Do you think that all the tx you have been doing have made the XMRV less active, and it's hiding out in the wbc's rather than out in the blood where a...
  28. kolowesi

    EBV in ME/CFS: Four Part Series

    smoldering infections I can't find info on the EBV test Dr. Lerner uses, but I remember the HCMV test looked for antibodies to early gene products. I think he uses an Italian test for EBV early gene products. If a virus is making proteins but not completely replicating, you could have an...
  29. kolowesi

    BRAIN FOG: What has helped?

    brain fog suggestions Great thread! Trying not to be jealous of you guys as my IQ has dropped a lot recently. Danny, you mentioned skewed DD hair analysis. I just got that done, and 9 of my minerals were low or sub-optimal. The doctor said, "Low stomach acid!" This has been a eureka, as I...
  30. kolowesi

    Anyone else here waiting for test results?

    xmrv test kit I sent an email request, I recommend others call instead of doing that. I got a reply email saying my request was forwarded and it would be about 3 weeks, but I don't know if that was accurate given the timeframes others were given and that I didn't talk to Megan directly and...