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

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  1. S

    Dr Patterson on Long Haul Covid vs ME/CFS

    For anyone still interested the IMD Berlin comparative tests for sCD40L, VEGF, and RANTES all came back within normal ranges. I had taken a statin for 8/9 weeks when those bloods were taken so who knows whether that influenced the reduction in levels, or whether they would have been within IMDs...
  2. S

    Dr Patterson on Long Haul Covid vs ME/CFS

    Thank you for the reply. Where did you get the second Rantes test done by flow cytometry?
  3. S

    Dr Patterson on Long Haul Covid vs ME/CFS

    For those of you interested and want to compare Patterson's cytokine profiles to another. IMD Berlin now appear to be offering sCD40L as part of their Covid Inflammation Panel. https://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/Anforderungsschein_COVID-19_Selbstzahler.pdf...
  4. S

    IncellDX Long covid testing

    Yes, they have monthly blood draws in the UK. see here https://www.covidlonghaulers.com/home You can sign up as a patient or email them if you live elsewhere to see if its possible to get the test done.
  5. S

    Vaccine Side Effects

    Hi All, Got my first Pfizer dose Monday last after two years of living under a rock. Have active Lyme and took a chance on getting the first dose to try and engage with society more. The side effect have been incredibly debilitating. My muscles are burning, I've a termor pulsing all over my...
  6. S

    Whats the best borrelia test on the market?

    The most important word in your question is "market" because that is exactly what is it, labs inventing tests for financial gain. That is not to say all labs are in it just for the cash, there are some labs associated with academic research centers and charities, who publish the scientific basis...
  7. S

    A little confused about enterovirus testing in Europe!

    @Hip is the guy to talk to about Enterovirus testing. From my own experience with IMD Berlin their communication is terrible, I am not sure where IMD sent my Enterovirus testing, but neutralization testing was done and and the reported to my doctor by fax and sent to me by post eventually.
  8. S

    Lyme Phage Test

    The test is one thing, and we debate whether to call it Chronic Lyme or Post-Lyme Treatment Syndrome or whatever, it is the treatment that is proposed on the back of this test is the issue for most concern. I have heard and read all the claims from RED Labs and Dr Teullières about how this test...
  9. S

    Borrelia miyamotoi anyone?

    I have been tested twice at RED Labs by way of the Phage tests and both results came back negative (blood/urine). As you said it depends on what treatment path is outlined for treating B. Miyamoto. Did you ever pursue a treatment for your positive result Jenc?
  10. S

    Lyme Phage Test

    I would thread carefully. Did you undertake this test on your own initiative or was it reccomdneded by a doctor?
  11. S

    Abnormal hair fibers - Exploring possible link to tick borne illness

    Hi again @Hip. Just regards the coxsackievirus B antibody neutralization test provided by the Hellenic Pasteur Institute, have you any experience of ordering this test? Their English language website doesn't seem to provide any information on ordering tests, requirements of samples etc. I am...
  12. S

    Post Lyme Treatment with KDM

    Thanks for the update Jenc. Have you being speaking to patients who are doing the 25mg protocol and if so how are they doing?
  13. S

    Lyme Phage Test

    @Sushi Thanks for the info. Mine was negative as well with a similar history of treatment approaches.
  14. S

    Post Lyme Treatment with KDM

    I'd imagine at that low dose you would have to get it made up at a compounding pharmacy. At least you were aware of your liver situation before embarking on DSF. Hopefully more people report their experiences in the meantime so we all can make a safe and informed decision to embark on DSF.
  15. S

    Post Lyme Treatment with KDM

    Thanks for your swift reply! I think a lot of patients and doctors are winging it on the dosing of DSF, using a lot of the first generation of patients as guinea pigs to see what side effects manifest and adjust the dosage and method of delivery accordingly. That might benefit those of us who...
  16. S

    Post Lyme Treatment with KDM

    @Jenc What was his rationale for changing from your original plan of 500mg DSF a day to the more gradual approach of working up from 50mg a day?
  17. S

    Borrelia miyamotoi anyone?

    Thanks for your reply Jenc, Id be very interested to see what treatment KDM recommends on the basis of this test. "Chronic" Lyme is a very controversial subject as you know, and a lot of people on here have been down the road of treatment on the basis of previous tests which were heralded as...
  18. S

    Looking for a doctor in Dublin, Ireland?

    In relation to finding a doctor to help with testing in Ireland, it depends on what you want to get done and what action you want to take once these tests results are in. If they are tests that you need somebody just to draw blood for and you can work on the results yourself I would think a bog...
  19. S

    Borrelia miyamotoi anyone?

    Hi Jenc, I havnt been tested by this method yet, but it has been suggested I undertake it. Id be very interested to know how this test result was reported and what options KDM has outlined to you in terms of treatment either antibiotics or herbal alternative?
  20. S

    Abnormal hair fibers - Exploring possible link to tick borne illness

    Many thanks @Hip for your response. Trying to find somebody to separate the serum for these blood tests could be the biggest stumbling block! I find the divergence in testing from the various doctors you referenced earlier quite interesting. Seems that each doctor has their own areas of interest...
  21. S

    Abnormal hair fibers - Exploring possible link to tick borne illness

    @Hip Following on from this, would PCR of a feacal sample be a worthwhile test for Enterovirus infections? Seems to be the only EV test available in my country. Thanks for all your information on this topic in the roadmap!
  22. S

    Lyme Phage Test

    Hi All, Another day another Lyme test... https://redlabs.be/phelix-phage-borrelia/ Has anybody had experience of being diagnosed with this test, and dare I ask being treated (successfully) following it?
  23. S

    Would you try a Lyme disease treatment ?

    There is that to consider too, its a similar situation if you pursue a herbal protocol for SIBO as well, the herbal preparations that are marketed are rather expensive in comparison to what the individual herbs would cost on their own. You could pursue a similar herbal protocol to the expensive...
  24. S

    Would you try a Lyme disease treatment ?

    If I was given the choice again I would not do the Lyme antibiotic protocol. I was 60-65% of my operating levels before a years worth of Doxy/Azrith, down to 40% at the end of it and I still havent recovered from the damage the treatment did to my microbiome to the gut itself. If you already...
  25. S

    SIBO / Dysbiosis herbal treatment

    Has anybody else got experience of the SIBO herbal protocol of Dysbiocide, FC Cidal and Caprystatin that @Aubry originally posted about? I have been prescribed this also, however after reading some of the comments on this thread about it, I am thinking twice about embarking upon that journey!
  26. S

    Assistance Required

    Hi All, long time reader, sometimes contributor here. I require some assistance with my current predicament! Just crashed out of a three month cycle of Flagyl 1000mg 8 days, rotated with Vivomixx. First month no real issues, second month emergence of muscular pain and flu like symptoms...
  27. S

    Brussels pharmacy - KDM patients

    Check your inbox
  28. S

    Appointment with KDM & prescriptions

    Hi Colm, Also an Irish KDM patient for a number of years. Most of the prescription medication he has prescribed for me to date has been available in Ireland, although some of it falls into the categories such as of "unlicensed" or "high tech" prescriptions which would involve a bit of work...
  29. S

    Zeolite and Zonulin

    Has anybody tried Zeolite pills to reduce permeability/ Zonulin levels?
  30. S

    CFS treatment in Ireland?

    Hi Cady, Sorry I am only getting back to you now, I only visit here now and again. To answer your more general question first, there is no specific CFS/ME specialist in Ireland, and from my own experiences I have not come across any doctor who is successfully treating people, however others on...