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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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  1. JBB

    32 of 40 chronically ill have spirochetes in their blood

    Well said and thank you for the extra info.
  2. JBB

    32 of 40 chronically ill have spirochetes in their blood

    Could the blogger send his evidence (videos) to someone with a trained eye who would be able to judge if these are some kind of spirochete perhaps? @Pactallon This might give it more weight. I don't think anyone is arguing this is empirical proof. I've suggested one person with ME do a Lyme...
  3. JBB

    32 of 40 chronically ill have spirochetes in their blood

    Yes this is correct! Sorry must have been having a brain fog day, edited to correct it.
  4. JBB

    32 of 40 chronically ill have spirochetes in their blood

    Nobel prize nominee Dr Lida Mattman has found spirochetes in MS, Fibro and ALS...why is it so difficult to believe that ME / CFS is not dissimilar. All the naysayers just seem to shout "there's no evidence, the tests are unreliable" while having read very little about Lyme disease. According...
  5. JBB

    Constant spaced out feeling

    Sorry I didn't mean that Borrelia by itself can't cause brain fog. I agree it certainly can! I must have not been very clear but perhaps what I meant is that it seems to me that "derealization / depersonalization" are more commonly a Babesia / mold symptom and that this is distinctly different...
  6. JBB

    Constant spaced out feeling

    @skyfall I don't usually post here anymore as I've found the many Lyme facebook groups and speaking to many Lymies for over a year now is a better way to get info. My gf who is a psychologist who has Lyme told me about this, I also get it from time to time: the feeling is called derealization...
  7. JBB

    Mold HLADR gene test in the UK?

    @Dufresne how did you conclude that you did have mold illness / susceptibility? Are there any more reliable tests?
  8. JBB

    Mold HLADR gene test in the UK?

    That's very interesting @Valentijn . So what you're saying is that it would work if you're Western European but perhaps not from a different patient set? I'm surprised as Horowitz and others seem to like him. Have you any ideas on how else to test for mold sensitivity? Realtime labs...
  9. JBB

    Mold HLADR gene test in the UK?

    Could anyone advise me where I can get the HLADR gene test that Dr Shoemaker recommends in the UK for mold susceptibility? Cheers, JBB
  10. JBB

    Immune Dysfunction in ME / CFS

    Great links and summary @Jon_Tradicionali thanks. Thanks @bambi. I agree, everything points to pathogen involvement at this point. I look forward to Lipkins further studies which hopefully will shine some light on what we are dealing with. Many thanks, JBB
  11. JBB

    Immune Dysfunction in ME / CFS

    Mady Horning says: Has "immune exhaustion" or "immonosenescense" been shown in any other diseases? How about chronic infectious diseases? Autoimmune diseases? Best wishes, JBB
  12. JBB

    New paper from the Netherlands: the treatment of CFS

    Perhaps, if we cross reference some of this information with Lipkin / Mady Hornigs study we will find some correlation...due to all our "mis-perceptions" at the start of marriage our cytokines are raised. As we come to terms with the disappointment of marriage our cytokines then drop...
  13. JBB

    1.5 years after treating lyme and i think I have a relapse

    I'd be very interested if you have any research about tissues in the nose allowing medication past the BBB @nofuture ? BBB is definitely a problem in Lyme although some medications can get through. You said colloidal silver was helping a lot...is it still? Best wishes, JBB
  14. JBB

    1.5 years after treating lyme and i think I have a relapse

    Good for you @nofuture . Glad you are making progress so quickly. Could you let us know what other holistic approaches you have tried? What doses etc? Pain in liver could be from overburden of toxins. Many people experience pain in kidneys, it is not clear exactly what causes this but...
  15. JBB

    Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

    @peggy-sue Yes. I have taken the information out of Dr Horowitz's book see pp.420,421,198 (very much in my words so could be inaccuracies). Once you read some and research yourself around this area it is very obvious and scientific. Of course detox is a rather loose unscientific term and...
  16. JBB

    Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

    @peggy-sue there is certainly nothing "quackish" about "detox" although I can make no judgements on the effectiveness of this clinic. Here is a brief explanation on why all Lyme docs believe detoxing is important. 1. When spirochetes are killed their outer surface proteins (lipoproteins) cause...
  17. JBB

    Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

    @Always Hope very sorry you saw no improvement there. Out of the people who were there with you how many DID see improvement that you kept in contact with?
  18. JBB

    Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

    I know someone who went here. I asked him about the treatment and this is what I gathered: -They have three phases. Detox > Kill > Detox. -The detox phase includes IV vitamins / minerals, glutathione, and also others which are "top secret". Maybe because they are illegal??! Or maybe he is a...
  19. JBB

    Send my daughter home, mother begs social workers after she was wrongly accused of poisoning her Re

    So latest update is...mother is still fighting to get daughter back. It is simply appalling and from what I gather from mother the restrictions placed on daughter are extreme - to the point I have difficulty understanding what on earth the point of them is. Very distressing indeed. Anyway...
  20. JBB

    Lyme conference Dr H. Dr B. etc - a must read

    IGeneX Lyme panel is $260 USD which is the Western Blot and IFA. The PCR is at best only 30% sensitive so probably not worth the extra $200. If you are more ill the PCR is likely to be more +ve. Many people in Oz are being diagnosed with Lyme, there are facebook groups there who may be able...
  21. JBB

    Lyme conference Dr H. Dr B. etc - a must read

    @heapsreal if you have sore shins, sore foot soles this is indicative of Bartonella I believe. You can do IGeneX tests from Oz which would probably be a good starting point. Also it might be worth looking into Advanced Lab for Borrelia. Fry labs does a PCR test for Babesia species which is...
  22. JBB

    1.5 years after treating lyme and i think I have a relapse

    That's fantastic that you have found something that works, let alone so simple. My advice would be - RUN WITH IT! There is no known medicine that definitively kills all Borrelia at the moment, so you just keep taking something to keep it at bay. But if CS does it for you then that is not a...
  23. JBB

    Lyme conference Dr H. Dr B. etc - a must read

    @Vic There are many possible causes for CFS / ME type symptoms...Lyme is one of em, I find it strange you can't accept this as a possibility. You may or may not have a valid theory of a subset of patients. Doesn't have anything to do with Lyme disease.
  24. JBB

    Improving Using Rife and CDS/MMS (Miracle Mineral Solution) for Lyme -- Coronavirus Update

    Thanks @brenda . Please let me know how you get on with herxings frequencies!
  25. JBB

    Improving Using Rife and CDS/MMS (Miracle Mineral Solution) for Lyme -- Coronavirus Update

    @Wayne thanks. Yes I know about the pro-oxidant thing with MMS. Shame but you can't have everything I guess! @brenda Have you had success with stopping herxing / detox? I can't understand how it works for detox. Cheers, JBB
  26. JBB

    Lyme conference Dr H. Dr B. etc - a must read

    I would like to add @Vic that I find your view very distressing and dangerous to people. I know people personally (and have met in person) who have had seizures, periods of unconsciousness, paralysis and are practically dieing of Lyme disease because of the ignorance of this disease. Indeed...
  27. JBB

    Lyme conference Dr H. Dr B. etc - a must read

    @Vic So I guess the National Health Service in the UK offering a Chronic Lyme test is based on completely unfounded evidence? They are pretty stingy over here so I'm sure they wouldn't throw money at something which is completely unfounded. No. There is mountains of evidence and no I can't be...
  28. JBB

    Lyme conference Dr H. Dr B. etc - a must read

    Sorry @Vic maybe I misunderstood your post but it made me laugh..."Chronic Lyme...reeks of bullshit." Perhaps it would enlighten you to know that there is a "Chronic Lyme" test in the UK now. There ARE quite a few reliable specialist labs contrary to your belief...Fry for example. No one is...
  29. JBB

    Improving Using Rife and CDS/MMS (Miracle Mineral Solution) for Lyme -- Coronavirus Update

    Interesting article on CD here: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0079157 Can you explain how you are using it @Wayne ? Dosing every hour or less frequent larger dosing? Dr K uses CD for treatment of Babesia...
  30. JBB

    1.5 years after treating lyme and i think I have a relapse

    Lyme doctors do not normally talk about a "cure" for Lyme. It is more a case of putting it into remission and holding remission as best as possible. According to Horowitz's book, 95% of people who are treated for Lyme and come off all antimicrobials relapse. Basically, at minimum herbal...