• 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.

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  1. V

    Strong and quick reaction to Valtrex

    Hi, that valtrex treatment a long time ago didn't change my overall condition but after that IgM for EBV stayed negative, only high IgG again. I went downhill anyway because of antibiotics and exhaustion and went through Rituximab and other treatments later which improved some symptoms.
  2. V

    Jarred Younger does a webinar with more updates

    Together with typical MCAS reaction like severe skin burning and itching, it triggered some kind of neuropathic dull pain mostly going through limbs, hands, and feet, on top of that dizziness, restlessness, irritation, headache so in total it resulted in total agony when I couldn't stand it...
  3. V

    Jarred Younger does a webinar with more updates

    I tried Montelukast for MCAS for few months and I have a lot of neuroinflammation. It didn't help for either. Maybe it does to other people. I had no reaction at all. But later other MCAS inhibitor, Cromolyn, improved MCAS and my neuro symptoms. I'm trying to get enough to up my doses. I hope...
  4. V

    Seeking information on long-term outcomes with Dr. Kaufman

    No, because it's not option for me. It's extremely expansive and I don't have insurance in US (also frequency of IVs and indefinite timeline is problem) and nobody will prescribe it to me in my country because it's not approved for any of my diagnosis and nobody will give it to me and I doubt I...
  5. V

    Seeking information on long-term outcomes with Dr. Kaufman

    So far no change at all. There were no complications. I don't think it will work for my ME/CFS. It is just exapansive long shot in my opinion. But I was just hoping for some improvement of MCAS and other rarer symptoms but nothing so far. I still need to source some other medications for other...
  6. V

    Seeking information on long-term outcomes with Dr. Kaufman

    @Rlman Yeah, I don't take Cunningham Panel seriously despite being positive on D2 ab. The test is just poor. Dr. K told me that the border is lower for adults than in the test fo children. So I asked the lab and truth is they don't have any data supporting that and they don't even have much...
  7. V

    Ciprofloxacin and other flouroquinolones

    @Learner1 It would be nice to know if the damage is irreversible or not as my the worst symptoms are neurological and induced by atbx. It would answer the question if I should pursue other potentionally useless treatments or I should opt out for euthanasia. It's more complicated because I have...
  8. V

    Ciprofloxacin and other flouroquinolones

    How did you get this tested? I always hit the wall when I try to convince any neurologist to diagnose damage done by the atbx.
  9. V

    Ciprofloxacin and other flouroquinolones

    They are toxic to mitochondria so it would not be a surprise that it can lead to all sorts of problems. I was seriously damaged by other antibiotics also due to possible mito toxicity when I already had ME and they caused me lot of new permanent syndromes. What kind of infection did you have?
  10. V

    Dr. Kaufman patients. Anyone Bartonella positive in Galaxy Lab being treated here?

    I stayed in Santa Clara close to SJC and took Lyft rides to Mountain view. I never waited more than 5 mins. You shouldn't have any problems at airport.
  11. V

    Seeking information on long-term outcomes with Dr. Kaufman

    Although I had only two appointments with Dr. Kaufman, I can't say anything but positive things so far. I can tell you that I have wide range of neurocognitive/neurological symptoms most people here don't have plus all the usual ones and I also have some symptoms he never encountered. I wanted...
  12. V

    Documentary: Undercover in German Lyme Clinics

    I'm glad somebody finally exposed this scam. Too late for me as I have already been damaged by wrong diagnosis by KDM and treatment with long term antibiotics too. It was suspicious that from certain point basically everybody tested positive on these tests. I remember that when I was at clinic I...
  13. V

    Misdiagnosed: How Children With Treatable Medical Issues Are Mistakenly Labeled as Mentally Ill

    I did get positive test result for Cunningham panel (test for PANS/PANDAS) as some others on PR who did this test as adults. And with all the suspicions that there is some autoantibody involved in ME/CFS too it seems likely there could be paralel in causality infection>autoimmunity. It's even...
  14. V

    Belgian newspaper Nieusblad has reported that De Meirleir is being prosecuted

    He's not only bad physician but also liar! (either that or he is senile and lost his memory) Together with his "treatment plan" I was pushed Product ordering form for expansive supplements by Protea Nutraceuticals B.V.. This was done personaly at his clinic and also I got it in letter with his...
  15. V

    Big thinking about trip to Brussels after unfunctional treatment CFS/Lyme in Czech

    Hello Martin, I was patient of De Meirleir for 6 years and he ruined me completely and his wrong treatments caused multiple new disease and problems. I lost huge amount of money and didn't get help even with one symptom. So I would strongly advise against wasting your last money on him. You can...
  16. V

    burning sensation on skin

    I developed same thing about year ago. Burning hands, feet, face, or any part of skin that is pressured. It turned out it is most likely from Mast Cell Activation Syndrome (mcas) which is common with CFS. Combination of antihistamines seem to improve this for me.
  17. V

    List of ME/CFS + POTS Related Autoantibody Panels (That Your Doctor Can Run)

    @Jesse2233 Do you know how much is Cunningham panel taken seriously by neurologists by any chance (in europe)? I'm afraid I would hit the wall again if I demand more neuro autoimmune testing.
  18. V

    List of ME/CFS + POTS Related Autoantibody Panels (That Your Doctor Can Run)

    It would be nice to know approximate price for panels too. I have done Cunningham and celltrend. I'm positive for anti dopamin 1, anti tubulin and 2 celltrend. I have wide range of neurological symptoms so autoimmune encephalitis is definitely possible but dr. did only these two. I would like to...
  19. V

    PANDAS/PANS treatment protocol for ME/CFS?

    Hi @Jesse2233, I just found out today I'm positive for anti dopamin D1 and anti tubulin in cunningham. I'm also positive on 2 antibodies in celltrend test. Dr. suggested Rituximab.
  20. V

    Dysbiosis Treatment with ABX, KDM

    @snowathlete I'm sorry you got permanent damage by his treatments too. I was on Rifampin, Clarithromycin and Telithromycin too. Unfortunatelly, gut isn't only thing which was damaged. There are more people like us on this forum who suffer from permanent damage because KDM ignores reported side...
  21. V

    Dysbiosis Treatment with ABX, KDM

    If you actually had any experience with Azithromycin you would notice there is warning about the heart thing on/in the box! It is known and possible risk and if you google it gives you like millions of results. That's why even lyme clinics using long term azithromycin do ECG before and sometimes...
  22. V

    Dysbiosis Treatment with ABX, KDM

    KDM destroyed my gut completely (among other things) with his random atbx. I didn't even had any major gut symptoms in the first year of illness. Before "treatment" I could even eat ice cream, fruits, chocolate... Now after his long term atbx I can't even eat plain rice... And problem is not...
  23. V

    CBD OIL... Anyone tried it? It's legal now.

    I can recomend Cibdol. It's legit. They have certified organic weed and analysis of product.
  24. V

    Meirleir treatment: avelox 400mg for overgrowth in gut

    Yeah, he did it to me and I know at least several other people who were negative for everything or only viral and should got ME/CFS diagnosis but got "chronic lyme". Of course none of them improved on long term antibiotics, most of them are worse... But he still had courage to proclaim "ME/CFS =...
  25. V

    Meirleir treatment: avelox 400mg for overgrowth in gut

    Is there any peer-reviewed published study supporting this made up statistic? I don't think so. If you want to continue spreading propaganda like this keep going I'm too sick to fight it as many others and you have bigger motivation defending your "saviour" and your investment. I will say it...
  26. V

    Meirleir treatment: avelox 400mg for overgrowth in gut

    He had plenty of opportunities to stop damaging and useless treatments when I reported progressing side effects, neurotoxicity and new symptoms over the years and reasses my case. He always dissmised anything I tried to say by "it's a herx" (despite not having any of the classic symptoms listed...
  27. V

    Meirleir treatment: avelox 400mg for overgrowth in gut

    I was his patient for 6+ years. He ruined my life and the rest of my health. In those 20+ visits he never said anything "very logical" to me. He drawed conclusions from absurdly vague symptoms or ignores parts that doesn't fit his current "discovery". He actually told me once that all my...
  28. V

    Weird goose bumps?

    Most damge was done by minocycline and azithromycine. But I was on fluoroquinolones before and they caused me peripheral neuropathy. However it was mostly reversible. After exhausting myself last two days browsing on computer I got these goose bumbps in patches again with all other symptoms...
  29. V

    Weird goose bumps?

    I get random goose bumps in some areas of body. It started after I got damaged by atbx and consequently much worse with all neuro symptoms. So I have many other symptoms now. It is always on strictly on one side of the body and lingers on the same areas over time. First it was on left side of...
  30. V

    Lyme questions

    I have this hyperreflexia too. I think this is common for ME. Neurologists ignored it because I had normal MRI too. My observation is that people with severe neurological symptoms are less likely to write on the forum much because writing,reading,thinking is extremely difficult. For this...