• 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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    Pulmonologist wants to know more about lyme disease

    I've found the best info to share are Burrascano's guidelines http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf and Dr Horowitz's book 'Why can't I get better'.
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    Cyst busters

    @heapsreal It's taken me years to be able to build up to tolerating 2 day pulses of metronidazole. Slowly is ok though, and I'm gradually making good progress. I still can't tolerate tinidazole at all, as it causes far too much die-off which my body can't cope with. Many do find tinidazole more...
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    Chlamydia pneumoniae - maybe? Help!

    @AndyPandy - hoping your immune system has managed to fight it off. I test negative for antibodies though, because so many years of Cpn and borrelia infection have suppressed my immune system. Probably worth still keeping Cpn in mind, if you still have symptoms.
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    Chlamydia pneumoniae - maybe? Help!

    Wishing you well, @Starlight. It sounds as though you are now heading in the right direction.
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    Chlamydia pneumoniae - maybe? Help!

    For anyone who hasn't found it, there's lots of info about treating Cpn at cpnhelp.org
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    New doctor wants to treat empirically for Lyme, good idea?

    I started abx treatment, empirically, 4 years ago, after 26 years of an ME/CFS diagnosis. I was so ill at that point, that treating was an easy decision, as I had absolutely nothing to lose. It made sense, clinically. I didn't have access to any testing at that point. Treatment is tough, but...
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    Doing So Well On Modified Cowden Protocol

    Pam - great to read your updates. So encouraging! I'm slowly starting to add Cowden herbs to my abx, so you are inspiring me. Wishing you well.
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    Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

    There's some more info about Keith Jarrett here: http://articles.latimes.com/1999/feb/23/entertainment/ca-10710 Antibiotics are mentioned on page 2.
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    Need help understanding Clamydia Pneumonia test results

    @Gingergrrl It might be worth asking on the Cpnhelp.org forum, as there is lots of info there.
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    Antibiotics with KDM

    @Daffodil - I have been on an oral antibiotic protocol for 3 years for Chlamydia Pneumoniae. I've been ill for 25 years with ME/CFS and lots of other neurological symptoms. It's very usual to have negative results in testing, because the bacteria 'hides' inside cells and so antibodies are not...
  11. C

    A thread about my Freddd protocol implementation.

    @CaliObserver Yes, I had pneumonia aged 2. A lifetime of sinus infections and chest infections. Interstitial cystitis from age 14. Diagnosed with ME following EBV. Gluten intolerance, too. And probable MS for past 7 years. Cpn, for me, seems to have been the link between all of these. I always...
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    A thread about my Freddd protocol implementation.

    @CaliObserver Given your symptoms, I think it's still well worth you looking at, even if you are not convinced about the diagnosis. Cpn bacteria is implicated in lots of these weird illnesses we seem to get. My diagnosis for the first 20 years of being I'll was ME. Wishing you luck.
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    A thread about my Freddd protocol implementation.

    @CaliObserver I can relate to everything you describe. But, with MS, I've found sorting methylation is very important, but not always enough. Have you looked at david.wheldon.co.UK/ms-treatment.html and the cpnhelp.org site? Lots of us are making good progress on the antibiotic protocol...
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    new free genetics course starts tomorrow!

    I've just signed up. Looks really interesting - thanks for the link. I'm already panicking tho', at the prospect of having to mark other people's homework. Doubt my brain can cope with that!
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    Help with Nac

    NAC can cause flu-like symptoms when there is a Cpn infection. Taking 2400mg of NAC is one of the ways to test whether there is Cpn infection - flu-like symptoms suggest there may be. Lots of info at cpnhelp.org.
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    Free CFS treatment book today only 5/12/13

    Many thanks for the info, Lynn_M. I was easily able to get the book from amazon.co.uk yesterday evening. Much appreciated.
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    Chlamydia pneumoniae and b12 antibodies

    The best place for information is www.cpnhelp.org. There was a TV programme broadcast about Cpn (in relation to MS) this week - which can be downloaded at http://www.abc.net.au/catalyst/stories/3572695.htm
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    B12 blood test

    Many thanks for the info, Rich - much appreciated.
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    B12 blood test

    Rich - is there a link to the Korean research, please? Many thanks
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    mb12, adb12 and mthf lozenge with no sweeteners and pointless additives?

    Yes, that's a good point, Adster - the quality of batches may well vary. Also, I imagine it's possible that some of us may be able to absorb the B12 more easily than others.
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    mb12, adb12 and mthf lozenge with no sweeteners and pointless additives?

    I'm sorry, Lynn, to hear that Freddd says the methylcobalamin I'm using is 'worthless'. It's working for me, so I'll stick with it.
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    mb12, adb12 and mthf lozenge with no sweeteners and pointless additives?

    Has anyone tried the No Shot microlingual methylcobalamin by Superior Source? It seems to work well for me, though it is fairly expensive, especially for the 5000mcg and 10,000mcg. I’ve not seen any mention of it on the forum here.
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    New here, B12 test results confusing. Not absorbing?

    Stacy – and Crux – this is the first time I’ve posted here, and it’s also the first time I’ve ever come across anyone else with high serum B12. Mine has been greater than 2500 for many years (with low MMA). I also have peripheral neuropathy, and always felt that lots of B12 in my blood and all...