• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. X

    People's experiences of Bartonella

    Hi @ChrisD, For testing I'd go to a specialist with cinical experience in treating Lyme. There's a huge difference between a doctor who treats say two cases a year vs. two per week. If you live in the UK that means going private. However, at present, I don't know of any UK Lyme specialist I...
  2. X

    I just "graduated" from a GET/CBT therapy at the Mayo Clinic. Ask me anything!

    Can you tell what criteria they used for your diagnosis? Thanks for answering all questions.
  3. X

    People's experiences of Bartonella

    @Michael_venice I have never been a patient of Dr K. I was diagnosed in the UK by a rheumatologist as explained in posts n.27 and 36. As for the other questions, any LLMD who treats according to the ILADS guidelines, and doesn't mess up with alternative treatments!, should be fine. Have a look...
  4. X

    People's experiences of Bartonella

    I pm'd you.
  5. X

    Has anyone ever NOT had awful side effects with Cipro?

    At the time I was supposed to take it for Bartonella and for a month but after a week without problems, my tendons became gradually sore and couldn't go further than ten days I think.
  6. X

    Has anyone ever NOT had awful side effects with Cipro?

    After about ten days I started to experience some pain in my tendons which went away once stopped. Until then it had been working well. A couple of years ago instead I tried Levaquin for my sinuses and had tendonitis after just two days. On the other hand, three members of my family and one of...
  7. X

    Phosphatidylcholine?

    Tried both oral and iv with no positive results.
  8. X

    Cognitive-behavioral therapy with Dr. Jesus

    @Glycon the title of your thread is inaccurate and misleading. The video is not about CBT and it is not about Jesus Christ, whose title by the way according to Sacred Scripture is not Dr. but Lord. The video you posted instead is about a charlatan, or false prophets as they're called...
  9. X

    Positive for Bartonella...and I have so many questions!

    The most effective abx was ciprofloxacin (levofloxacin would be more effective but it was more expensive and my GP couldn't prescribe it) but I had to suspend it due to tendonitis. I was then prescribed a combination of minocycline, rifampin and azithromycin which worked fine. After about four...
  10. X

    Has anyone cured lifelong anxiety depression and ocd

    Hi @stetson28 I used to purchase gcmaf privately from a dr in Vienna. It's now distributed online under the brand name Bravo Probiotics. I used the recommended dosage daily for 12 months. The thiocyanate from various sites, last time from a uk site I can't recall the name now, if you google '1st...
  11. X

    How to forgive

    Forgiveness, I learnt is an act of the will. You can find peace by willing to forgive them. This does not mean you have to forget what they did to you. What matters is that going forward you sincerely wish only good to those who hurt you. This is the theory. In practice, you're going to have to...
  12. X

    Spinal tab / lumbar puncture scheduled - what panels should I request?

    @Antares in NYC I had a spinal tap about six years ago and it was useless. I had been diagnosed with Lyme a couple of years earlier but all the tests (bacterial, viral etc) from my spinal fluid were negative. In addition as a result of that test I was forced to bed for weeks with an inflamed...
  13. X

    ABX treatment failure, nothing improving, feeling overwhelmed and powerless

    Hi @Antares in NYC I'm very sorry to read of your lack of improvement in your health and also the cowardly inhuman way you were treated by work colleagues. I think your doc was right in stopping the treatment. I did an overall three-year abx treatment for Lyme (incl' Bartonella) and my view is...
  14. X

    Religion?

    Hi @David Jackson, I don't think there are stats on this. However, you could easily come to that conclusion by studying history and personal observation because since the very beginning, for Christianity that was the case. There's no other explanation for the growth and flourishing of a church...
  15. X

    People's experiences of Bartonella

    Hi @valentinelynx Have a look at Dr Burrascano's guidelines. The rheumatologist who diagnosed and treated me used to follow Dr B and ILADS protocols. For me it worked out just as explained in those guidelines. Bartonella resolved relatively quickly, Borrelia took much longer.
  16. X

    Fatigue gone but "jittery and stressed" please please help

    I'd stop everything and wait. B vitamins can cause insomnia. If symptoms subside then you'll know for sure it was the Bs. When I was healthy I did not have reactions to any supplements. Then I got sick and started to react to most vitamins, minerals and a lot of other stuff. Later with recovery...
  17. X

    Has anyone cured lifelong anxiety depression and ocd

    No worries. All big and lasting improvements came from (chronologically) 1- antibiotics 2- probiotic GcMAF 3- thiocyanate. I also had a few courses of Ivermectin supposedly for Cryptostrongylus pulmoni (Kaplow's roundworm). Was it for that worm or something else anyhow that also helped somewhat...
  18. X

    Advice with Insurance Company on Short Term Work Leave

    You need a letter from your GP detailing your diagnosis and the medical reasons why working PT (or not being able to work at all) is recommended for your health situation. Ideally you would also need a diagnosis and similar arguments from a consultant. With two doctors' opinions on your side it...
  19. X

    Do people ever recover from orthostatic intolerance?

    Mine gradually reduced during treatment for Lyme then it went away completely and haven't had that symptom for three years. I still have a lower than avg blood pressure but it doesn't fluctuate any longer bw sitting and standing. Before that there was nothing that really helped, only minor...
  20. X

    Atrial Fibrillation and ME/CFS

    I only know that it can be caused by an infection esp. affecting the heart. My dad developed AF following a staph infection and it resolved once the infection was completely treated which took several weeks.
  21. X

    Religion?

    Religion no. God's love and grace yes. It did more than helping with suffering, pulled me out of the shadow of death and back to life.
  22. X

    People's experiences of Bartonella

    Hi @sianrecovery I treated mine following a positive but dodgy serological test. Never had any red rashes, main symptoms were CNS-related i.e. feeling wired and nerves kind of vibrating esp. through my legs and feet. Initially, my consultant recommended a course of Levofloxacin but my GP said...
  23. X

    Book of Prayers

    Hi @Andrew, thanks for posting! you're not alone... ps: do you seek and receive regular prayer ministry as well? It can speed up things a lot.
  24. X

    What is least damaging med for depression, panic

    I never tried hydrocortisone. I only experienced getting off diazepam/valium by a very gradual reduction in dosage and even that way was a nightmare. I'd try may be by reducing something like 1 mg or half that every week or fortnight.
  25. X

    What is least damaging med for depression, panic

    it could be the side effects of cortef...
  26. X

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    In the early days of my illness I saw a psychiatrist who, although not a specialist in the ME area, had a no-nonsense approach to the illness. He believed it wasn't psychological and was certainly a reasonable and compassionate man. He also worked as consultant in legal cases...
  27. X

    anyone with me cfs cfids with vertical nystagmus

    Is there any way of getting a second opinion?
  28. X

    Lightning, reverse etc. says cortisol is too high, but what if too low?

    There's no study showing that's the case. It's a lie because someone who makes a living out of also treating people with CFS, probably looks at scientific literature and there's nothing to back that up and they're most likely aware of that. Since they're marketing a psychological treatment, and...
  29. X

    Mega High Dose Vitamin C

    I can't see how any substance could kill cancer cells whilst doing nothing to normal cells esp. something such as a water soluble vitamin.
  30. X

    Simplified Methylation Protocol Revised as of Today

    You're welcome. They're just band-aids. I'd try and rule out first if the underlying symptoms may be due to over dosing or sensitivity to some supplements you're taking...