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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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Search results

  1. L

    Cistus incanus

    Hi "Howirecovered". I'm 3 months into the antiviral trials now (under Dr. Pridgen in the US) . It's been a roller coaster ride, but I was told to expect this. When I first started the medications I had 4 days of hell. Then 5 days of really great. This was unheard of for me, 5 days in a row...
  2. L

    I was cured with GCMAF

    Meant to insert this link https://www.gcmafplus.com/?gclid=EAIaIQobChMIj9Hql_Dm2wIVEZ4bCh2FDQtwEAAYASAAEgL0ovD_BwE
  3. L

    I was cured with GCMAF

    I don't seem to be able to find any other conversations on GcMaf so I'm posting here. I'm assuming the injectable GcMaf is still no longer available (and the Japanese offering still not precise enough in the dosing). Has anyone tried this particular version with the Frankincense and if so can...
  4. L

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Has anyone watched this video where Dr. Klinghardt speaks on Suramin ? The entire speach is well worth watching but if you don't have the time start at 30 minutes into the video where he speaks in depth of Suramin. He also then mentions that they have now produced a homeopathic version of...
  5. L

    Cistus incanus

    How are you all doing with the Cistus Tea trials? Does anyone know if the cistus tincture is as effective as the tea leaves ?
  6. L

    Help please? Homozygous for MTHFR C677T / COMT V158M / COMT H62H / VDR Bsm

    Alicec, thank you so so much for taking the time to put all this most helpful information down. I'm very grateful indeed. I'm going to read through it all carefully and consider my next step. Thank you again.
  7. L

    Help please? Homozygous for MTHFR C677T / COMT V158M / COMT H62H / VDR Bsm

    Alicec, I am so grateful for your response. I'm so ill and no treatment I seem to trial helps. I recently returned from 3 weeks in hospital in Germany hooked up to IV 4 times a day. Still no improvement and often too sick and ill to get out of bed. Thank you for your very welcome advice you...
  8. L

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    I am doing LDI now. As well as LDN. It's not a quick fix, however, I do believe many are seeing real improvements. The difficult part is being patient in trying to find your 'core' dose without flaring. Everyone is different, so it's a little bit of trial and error. If you take a dose and you...
  9. L

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Hi everyone. I started this thread a year ago. Topic meandered from the tracks at times, but seems it's back on course now. I started on LDI treatment in Sept 2015 after a lot of research. So far it's slow going as I am in the UK and my doctor, who is trained by Dr. Ty Vincent is in the States...
  10. L

    Building Blocks of a Disorder

    Thank you for your reply. Is there anyone that can guide me to the most up to date protocol for this please????
  11. L

    Building Blocks of a Disorder

    Hi Lou. Thank you. You're not kidding about it being complicated when starting out. I need this broken down in layman's terms and directions. A list, that tells me what to get, when to take and what reactions to expect and look out for. Fredd's knowledge is immense and I am grateful to you all...
  12. L

    Building Blocks of a Disorder

    Lot's of information there thank you again. Trying to decipher it and break it down to a starting point. I have the CNS damage, as though the signals and neurological pathways are misfiring or crossed in my brain. Pain is a constant, feels as though my brain is swollen. My muscles in upper body...
  13. L

    Building Blocks of a Disorder

    Fred thank you for your reply. I would say my anxiety and ability to handle stress is far lower since I became ill. Other situations are heightened, such as claustrophobia, not just that I can no longer enter elevators but being inside in crowded places. This has all come about since becoming...
  14. L

    Building Blocks of a Disorder

    Thank you.
  15. L

    Requesting help with treatment for homozygous a1298c

    Hi. I have read your info with interest. I have been very ill for 4 years, firstly diagnosed with CFS/ME and then in 2015 I tested positive for Lyme Disease. I decided to get tested by 23andMe (I have attached my results from Genetic Genie) In short I need help please and any advice on where...
  16. L

    Building Blocks of a Disorder

    Helen, thank you and forgive my ignorance on this, but 'what' exactly do I do? Whatever it was you did I hope it gets Fredd's attention and he will deam me with a reply.
  17. L

    Help please? Homozygous for MTHFR C677T / COMT V158M / COMT H62H / VDR Bsm

    I have been very ill for 4 years, firstly diagnosed with CFS/ME and then in 2015 I tested positive for Lyme Disease. I believe I have a vitamin B12 Deficiency (yet my tests constantly come back sky high) and that I have a blocked methylation pathway. My 23andMe results indicate I need help in...
  18. L

    Building Blocks of a Disorder

    Fredd. Thank you for this article. I have been very ill for 4 years, firstly diagnosed with CFS/ME and then in 2015 I tested positive for Lyme Disease. I believe I have a vitamin B12 Deficiency (yet my tests constantly come back sky high) and that I have a blocked methylation pathway. After...
  19. L

    Federal US Court rules Hepatitis B vaccine caused Chronic Fatigue Syndrome

    Just read this. Staggering! 2 months prior to becoming very ill with CFS 3 years ago, I was given the hepatitis vaccine. I had a severe reaction to it immediately in the doctors surgery within seconds of it being given which they documented. I ended up passed out and woke on a tilted bed. Was...
  20. L

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Hi. By shot I mean it comes in a syringe and can be given under the skin or (as I take it) sublingually under the tongue. So as Dr. Ty Vincent sees no difference I'm happy to take under the tongue as I can do it myself. Dr. B took all my symptoms and info into account, including that I am very...
  21. L

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Hi. I am in the UK and am being treated LDI by Dr. B in the States. I have had my first dose shipped to me and took it approx 3 weeks ago. Dose was a mix of Lyme and Yeast at 15C. I felt pretty ill for about 4 days after (could have been my normal up and down of symptoms) but then had a run of...
  22. L

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Hi, Good to hear you are doing well. I did not feel comfortable staying with the London doctor, we left the £400. consult without confidence in him or the experience he has with this. I then contacted quite a lot of people on Ty Vincent's list of doctors he has trained and I found one in CT...
  23. L

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Can anyone shed light on what they have experienced or know about LDA/LDI in regards to a new technique that seems to be working for so many. I came across this interview with Dr. Ty Vincent in Alaska who seems to be pioneering this form of treatment with remarkable results. This...
  24. L

    Very High Intracellular Calcium

    Hi. I sent them to Nandixon as he sent a PM. Thank you for asking. Do you think it is worth uploading then here. I have not had much response, but then perhaps it's not such a common problem and so not many will have knowledge of it. I just hesitate in going ahead with the immunotherapy that...
  25. L

    Very High Intracellular Calcium

    Thank you so much for your advice. Will try it.
  26. L

    Paper on killing Lyme persisters in vitro

    Having just read this recent publication (link below) result I couldn't help but be excited by it. A study by Johns Hopkins I believe produced these impressive results from combining certain antibiotics. "Remarkably, we found that daptomycin in combination with doxycycline and cefoperazone was...
  27. L

    Very High Intracellular Calcium

    Thank you. May I ask why you use the resveratrol (is this made from red grapes?). I'm trying the magnesium citrate but can only tolerate 200mg per day due to the side effects of dioreaha (even this tablet I have to break into 3 pieces and take throughout the day).
  28. L

    Very High Intracellular Calcium

    Hi and thank you for reply. I'm looking at my results and can only make out the comments "Intracellular calcium is high at 255 nmol/l *Normal is 100" . I can send you my results and I'm sure you'd make more sense of them? Is it OK to upload my results on here? Or can I send to you in a PM (not...
  29. L

    Very High Intracellular Calcium

    Hello All I have been very ill for 2.5 years. First diagnosed with CFS/Fibromyalgia and recently tested positive for Lyme. I am new to this forum so not sure to post this question here or in CFS area, so will do both. I was about to start treatment via IV antibiotics in UK (every day for 4...
  30. L

    Very High Intracellular Calcium

    Hello All I have been very ill for 2.5 years. First diagnosed with CFS/Fibromyalgia and recently tested positive for Lyme. I am new to this forum so not sure to post this question here or in CFS area, so will do both. I was about to start treatment via IV antibiotics in UK (every day for 4...