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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. filfla4

    Specific muscle problems in ME: forearm

    Thanks @Dr.Lynne I've identified a physio clinic that does dry needling. I might get in touch with them next week.
  2. filfla4

    Specific muscle problems in ME: forearm

    Thanks @Martin aka paused||M.E. No, I don't think this is an allergy issue. Yes, we have a lot of mosquitoes here and of course I get butchered, while my husband sitting right next to me doesn't get bitten once. But I don't think this is a skin/allergy thing. It feels deep down. Also, don't...
  3. filfla4

    Specific muscle problems in ME: forearm

    @junkcrap50 I think deconditioning is definitely part of the problem. I haven't done weights etc. The physio involved manipulation and infrared heat. No, I haven't had Covid, just two doses of the Pf vaccine. My immune system (prob autoimmune) is messed up and I really struggled after taking...
  4. filfla4

    Specific muscle problems in ME: forearm

    It doesn't feel like fluid. It feels like a knot in the muscle, if you know what I mean. But I have noticed that when I massage it myself, with anti-inflammatory oil, to try to release the knot, the swelling and the pain gets much worse. So I'm now just applying (and not massaging) Ibalgin...
  5. filfla4

    Specific muscle problems in ME: forearm

    Thanks. I don't know if physical therapists do that sort of thing here. Will find out.
  6. filfla4

    Specific muscle problems in ME: forearm

    Thank you @junkcrap50. A lot to digest there. I have to explain that I live on the tiny island of Malta in the Mediterranean. So medical specialists do not have the turnover of patients to be able to focus on only one area of their field. The doctor I saw is an Orthopedic Surgeon who would...
  7. filfla4

    Specific muscle problems in ME: forearm

    This is the Ultrasound report:
  8. filfla4

    Specific muscle problems in ME: forearm

    Thanks. Appreciate your input. Anyone?
  9. filfla4

    Specific muscle problems in ME: forearm

    Wouldn't that show up in an ultrasound?
  10. filfla4

    Specific muscle problems in ME: forearm

    Not sure what you mean by "blood flow" exactly. I've recently had a lot of blood work done by a Haematologist and I have a follow-up appointment with the same on 6th Aug. From what I can tell my inflammatory markers are high; my immune markers are not good (flow cytometry) and there's much more...
  11. filfla4

    Specific muscle problems in ME: forearm

    Is this a regular thing in ME? I've had ME for 28yrs and it's the first time I've had something like this. I have a visibly inflamed forearm which is really painful, with the pain radiating both down and up my arm. It comes and goes, probably depending on how much I use my arm. I've had this...
  12. filfla4

    Meirleir Poll

    I started seeing KDM about six years ago. I would say that on the whole I have improved from functioning at around 40% to around 80% but I seem to be stuck there. I can't seem to improve any further. The best feedback I can offer is this: on the positive side, I think that he cured my EBV...
  13. filfla4

    Pseudomonas aeruginosa

    http://news.uchicago.edu/article/2009/04/14/research-could-lead-new-non-antibiotic-drugs-counter-hospital-infections
  14. filfla4

    Pseudomonas aeruginosa

    I've been a patient of Kdm for the last 4yrs and have been on abx treatment for Lyme/Bartonella for the last 2.5yrs: oral, IV and also herbal, as well as several other treatments. I just got some new blood results and now he has found me IgA positive for Pseudomonas aeruginosa. My result came...
  15. filfla4

    Wish me luck I start my treatment with KDM on Monday

    Hope to meet you at the clinic Riverview!! I'm the one going through the clinic with my bodyguards :) (actually my two teenage sons who are also having treatment). Please send me a message if you need anything. Bea x
  16. filfla4

    Lyme community says we all have it

    @Hanna It is a bit difficult for me to track my progress and subsequent decline in detail because I have been on a roller-coaster of stress for the last 3 yrs which wreaks havoc with my Lyme progress. I would say that after the first round of IV's (4wks) it probably took about 3/4 months...
  17. filfla4

    Lyme community says we all have it

    I am definitely better than when I started out with Kdm 4yrs ago. However I would not say I am cured. I know that from past experience, when I stopped the abx I felt very much better, only to start to decline again a few months later. I keep hoping that each time I will last for longer...
  18. filfla4

    Lyme community says we all have it

    Ok, so here's my 2 cents worth: I've had "ME" for 21 years. I have have been a patient of Kdm for just coming up to 4yrs. On my first visit he tested me for Lyme and the result was negative. I'm afraid I can't remember what test he used. I started his treatment protocol which, among other...
  19. filfla4

    My first appointment with KDM

    Hi everyone! I haven't been around for a while as I've been on the move and have had computer problems. So...we've now been based in Brussels for 6.5 weeks. We've had 4 weeks of IV azithromycin, which was then continued orally for the two-week break. This is now our first week of 6 weeks of...
  20. filfla4

    My trip to see Professor De Meirleir (long post)

    I remember that tender spot from my first visit 3.5 years ago! I too jumped in pain when he pressed it rather strongly. I've always had pain in that spot, long before I became very ill. In fact, I was first diagnosed with ovarian cysts (this is more than 30yrs ago when the testing wasn't...
  21. filfla4

    Malta: ME, FM recognised as chronic conditions

    Here's our follow-up to the above article, published in today's Times of Malta
  22. filfla4

    Good article on how draft for next WHO icd classification does not have ME under nervous system dis.

    Is anyone aware of this? http://dxrevisionwatch.com/2014/02/08/update-on-classification-of-the-icd-10-g93-3-categories-within-the-icd-11-beta-draft/
  23. filfla4

    floaters in my eye

    Have you been adequately tested for Lyme Disease?
  24. filfla4

    Need Help for my 11 year old - Lyme, many SNPs, PANDAS, Aspergers, Anxiety

    I don't know if this helps, but here goes... My 15yr old son was diagnosed with Dyspraxia aged 8yrs. He tested positive for Lyme by PCR, confirmed by DNA sequencing 20 months ago. Last winter he was on Azithro & Doxy abx for 9 months. It was a tough regimen. My LLMD also prescribed "Daily...
  25. filfla4

    In Belgium to see Dr de Meirleir

    You guys!!! :rofl:
  26. filfla4

    80% of CFS sufferers have Lyme? Is this true or an exaggeration by LLMDs to make money?

    One of the leading labs in Europe for Lyme testing is Infectolabs http://www.infectolab.de/ This lab is associated with the dedicated Lyme treatment clinic in Augsburg, Germany http://www.b-c-a.de/ which is headed up by Dr Armin Schwarzbach. Anyway, a few days ago I was listening to a radio...
  27. filfla4

    Have here anyone seen KDM at WPI? Can you tell me about your experience?

    $700 for the appointment!! That's ridiculous! In Brussels the charge for an appointment with him is only around 80 euros. Of course then the lab tests and cost of meds put the whole thing up.
  28. filfla4

    In Belgium to see KDM

    I've finally just had my blood results back from my visit to Brussels in September. Just to remind you, I was positive for Borrelia by PCR and confirmed by DNA sequencing. I had 4 weeks of IV ceftriaxone, followed by 8 months of abx (doxy, azithro and plaquenil). I finished the treatment last...
  29. filfla4

    Soluble CD14 testing

    Sushi, my sCD14 is 3,993.00 on a range of 1,430.00 - 2,800.00 ng/ml. Any thoughts/explanation on what it actually means? Any help in understanding this would be welcome!!
  30. filfla4

    Have you been properly tested for Lyme poll?

    Can't take the poll. I was tested by PCR (positive), confirmed by DNA sequencing. I never took a basic test.