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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. R

    IV antibitoics and the gut inofrmation needed.

    I had very bad gut issues before starting any treatment. But I found with IV's, I had little to no problem with my gut. When on oral abx, my gut is so much worse. I always dread being on oral abx because of how it impacts on my gut situation and I was really glad to get a chance to take a break...
  2. R

    When should you go to the hospital with a migraine?

    I have had a migraine now running for last 4 days, and one for 2 days 2 days before the 4 day run. Real fun! I have given up now taking the meds for it cos they are strong and don't like taking to many days in a row, and well, they usually work and obviously not fixiing it now. I do have a...
  3. R

    Started 4ME / nexavir

    I think at first I used to feel shaky or muscle twiches , something funny anyway that I don't usually get, in my legs for a bit after taking it. It just felt weird, not painful or scary. But I did feel a really big uptake in energy levels around that time too.
  4. R

    Cowden Lyme Protocol

    I had serious fatigue, as well as other herx reactions, when I first started herbals and for many months in the beginning. But that was mainly Samento and Banderol reaction. I don't think I had much reaction or effect from Cumanda. I was able to increase drops rapidly on that one, while S & B...
  5. R

    Dr Jemsek and Alan MacDonald speaking at London conference - May 15th

    I saw Dr Marjo Valonen speak at a conference last year. I really enjoyed her talk - for me, it was the best and most informative that day of all the speakers. I really like her approach in treatment and was a lovely person to speak with in depth during the breaks. Also, had lyme disease...
  6. R

    Could I have Babesia?

    the babesia symptoms are improved, recent testing now says negative. Lyme is still going strong though. But I think I am now finally turning a corner with Cowden protocol, tolerating it now and increasing drops to 20 now. My physical energy and general ability hugely improved the month of...
  7. R

    Could I have Babesia?

    Hi @Daffodil , do you get air hunger or sob? or very severe sharp stabbing pain in chest (between ribs, intercostal muscles I think) anytime you breathe in? I think there is a proper term for that stabbing chest pain but can't think of it right now since it is 3am here and can't sleep :( Well...
  8. R

    My first appointment with KDM

    HI, I had elevated ammonia in serum too. I can't remember the figure, I need to check my notes/results. But I think it was similar to yours. I had an appointment last week and asked about it , what it meant etc. He said it is caused by gut issues/problems. I was surprised as I assumed the high...
  9. R

    far infrared sauna confusion

    I was doing sauna's at home for a while at the beginning of the summer and found them a great benefit at the time. I mean sometimes I would be completely wiped out afterwards and need to rest/lie on bed for half an hour or hour sometimes. But once I passed that initial bit, for rest of day...
  10. R

    In Belgium to see Dr de Meirleir

    @Hayes When I first started taking it, my stomach reacted for a few weeks - bloating etc. But no headaches though.
  11. R

    In Memory of Prof Austin Darragh

    A great man - didn't know he passed. RIP
  12. R

    Does KDM worry that long term abx for Lyme treatment may be bad for the gut?

    VSL#3 is a name of a probiotic that KDM prescribed me and many others. However, I think it has recently changed names ( I should have mentioned that in last post but completely forgot). My brain is not working too well at all today so I can't recall it but think the new name goes by Vivomixx or...
  13. R

    Does KDM worry that long term abx for Lyme treatment may be bad for the gut?

    I think VSL is one of the better probiotics out there, even though it is expensive - I find it worth the money cos I have found it very hard to find a replacement probiotic anywhere near as good and as effective as it. I was prescribed VSL for about 2 and 1/2 or 3 months before I started...
  14. R

    Starting 3rd mont of abx: doubts about Clarithromycin (2 diff formats)

    I took Clarithromycin combined with Doxy for about 2 months last Oct -Nov. I had to take both of them twice a day. I have no idea about the slow or fast absorption rate differences or which is best. I bought what the pharmacist produced for me from the prescription/protocol. I didn't think of...
  15. R

    Has anyone actually been cured by KDMs lyme treatment?

    There is a facebook group called Lyme success stories or something similar. People post what their treatment was, how they sick, supplements, detoxing etc , the whole story. But they only allow people who are better to post, not just those who have improvements or half way there. I have not read...
  16. R

    Has anyone actually been cured by KDMs lyme treatment?

    When I was first diagnosed last year, I met with a local lady to had been treated for Lyme and was recovered. She gave me lots of invaluable advice about the process, how she felt on certain drugs, what she did , found helpful - most of all she gave me much needed hope! But she threw...
  17. R

    Antibiotic Ketek. Would you?

    Hi Justy, I have also been prescribed this. My letter with new protocol came in the post the other day. I don't know anything about it to help you sorry. But would be interested to know more about it too.
  18. R

    Dr. John Lambert

    I know he is an infectious disease doctor, and sees patients for Lyme. I am not sure if he does ME/CFS, but perhaps he does too. I will send you a PM tomorrow with some info, as I am about to go to bed. But I only had a one off appointment with him, so can't help with treatment stuff. I'll share...
  19. R

    Dr. John Lambert

    Yes, I had an appointment with Dr.Lambert about this time last year. Is it for Lyme disease, or ME/CFS.?
  20. R

    C3a & C4a test/Lyme vs Mold

    I got my test results back last week and they included C3a and C4a tests, which I never had done before and know nothing about. My results were: C3a : 0.92 (0.58 - 1.92) C4a: 0.32 (0.57 - 1.68) Last year at my first appointment, I tested positive for Lyme (LTT) and for mold...
  21. R

    Cowden Lyme Protocol

    I put my order in with Nutramedix last Friday, and 2 big boxes arrived this morning with my Cowden herbs! I didn't order the full 9 months, was too cautious about it, just in case they don't work for me/ react badly to them. I think I ordered 3 or 4 months to try. I am going to have to study...
  22. R

    After huge relapse LTT for lyme finally positive after years of negative results: My story

    Hi @Vojta I have heard great things about that new clinic and that young doc. I know someone who goes there also. I am glad they found you some answers finally, even if a positive Ltt is not great news for you, or cause more questions!
  23. R

    Cowden Lyme Protocol

    thanks for that Pam. I did try Andrographis before I started any treatment over a year ago, and found I did well on it. Some of the bottles don't seem relevant to what I need - metal detox, and Bart herbs, I don't like wasting them but ordering full protocol seems best deal.
  24. R

    Cowden Lyme Protocol

    Ah ok more replies, while I posted!!! I am specifically concerned with targeting my Babesia at the moment. Really want to knock that one out good and hard, fingers crossed. I was hoping my new test results would be back before the special offer deadline offered to the conference goers runs out...
  25. R

    Cowden Lyme Protocol

    @Dufresne Thank you for the response That is my main concern, if I decide to go herbal route , should I stop abx altogether or continue with them and see how it goes for me. It's a tough choice for me, I feel I am at a cross roads with my treatment right now, or at least a few months. I'm tired...
  26. R

    Cowden Lyme Protocol

    Hi, sorry if I am gate crashing Daffodil's thread, but I had some questions about the Cowden Protocol and didn't want to make another thread on same topic. A week or two ago, I went to a Nutramedix workshop all about Cowden Herbal Protocol, this also offered a discounted rate for buying so I...
  27. R

    Questions about staying in Brussels and clinic treatment

    I tended to feel v v cold while getting infusion even if it was warm outside or even if it felt ok in the clinic itself while not hooked up. They have red rugs to use, I think most people were using them. Sometimes I used two. But then I have always been a v cold person even before being sick. I...
  28. R

    Question about test results after first appointment

    Yeah the break might be a problem but contact them before the break, even if all the results are not back , they can send what ever they do have. But do give them a few days/week to respond, or enough time that you can get back on to them if they don't reply straight away.
  29. R

    Question about test results after first appointment

    Hi Sarah, I emailed Infectolabs about results and they replied with my Ltt results. I also chanced emailing redlabs but they said they send results to the doc so I would have to get them off him. So about a week or two before my second consult, I emailed (and then a few days later phoned) the...
  30. R

    New Clinic

    Himmunitas clinic could keep going nicely with just locals - Belgians and Netherlands. So so many patients , even with out internationals thrown in too.