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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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    Ceftriaxone Rocephin: Experiences and Advice

    I can relate @duncan - I am hesitant to start antibiotics when I am hearing of complications like thrush and candida while not finding many people getting sustainably better with the combinations of antibiotics and other treatments recommended by LLMDs. Do you know of specific forum users who...
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks for this and your subsequent comment @duncan -- what are the very good alternatives to Ceftriaxone you are interested in? Have you started to try them? Cheers mate! Cheers
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks @paolo - sounds like you have some promising responses with these antibiotics. Do you think you might have another (or simply a different) bacterial infection to Lyme? In addition to the Lyme diagnosis I received, I have M. Pneumoniae and C. Pneumoniae IgG antibodies, so wonder if they...
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    Ceftriaxone Rocephin: Experiences and Advice

    Very sorry to hear about your reaction to Rocephin @BellaSC, and subsequent ME/CFS diagnosis. I have been wondering whether antibiotics can exacerbate CFS symptoms, as some people are reporting that they didn't have PEM at the start of their CFS experience, and some folks are describing...
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks @Sushi -- my comment to Helen was inaccurate, and I have edited it to reflect that she was not the only person I read reporting improvement, but the only person reporting sustained improvement. Valentijn posted improvements early in her treatment in January, and she is now reporting that...
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks @paolo -- sorry to hear you relapsed. Did you find many side effects (or herxing) on Ceftriaxone, and are you planning to try it again given you had a positive experience? Would you try more and different antibiotics and/or probiotics? As others have noted sometimes antibiotics are done...
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks @Valentijn - your philosophical point about people reporting unduly negative responses to treatments is noted and I agree. Of course, it cuts both ways as well. It is also common to see people claiming "good" results that disappear after days, weeks or months when we read their post...
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks very much @Helen - you were the only person with experience with Ceftriaxone I read which was positive and sustained :) Would you mind sharing how you were diagnosed for Lyme? I ask because I came up negative for Lyme using the tests accepted by the CDC (EIA with reflex to Western Blot)...
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    Ceftriaxone Rocephin: Experiences and Advice

    Thanks @msf, regarding your questions: 1. I counted as "extreme" things like describing the side effects as "horrific", having a "gall bladder attack" (ceftriaxone can create "sludge" in gall bladder), "severe intradermal reaction". I would put "life-threatening" as a level stronger -- though...
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    Ceftriaxone Rocephin: Experiences and Advice

    I have read all of the posts on the forum regarding the use of Ceftriaxone and Rocephin and want to share what I have found (below) as well as ask about others' experiences. Has anyone tried Ceftriaxone/ Rocephin who has had a positive or negative experience which they would like to share? Tips...
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    Antidepressant Concerns and Use in CFS Population: Your Experience or Research?

    Thanks @heapsreal - one explanation for why you may have experienced an improvement followed by a return of symptoms while on an AD is that the brain seems to adapt itself to the chemical. For instance, when an SSRI blocks a reuptake channel to increase serotonin availability in the synapse, the...
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    Antidepressant Concerns and Use in CFS Population: Your Experience or Research?

    Wow @justy -- that sounds terrible, sorry to hear but thanks for sharing. What years was this timing wise -- you had post-natal depression and took Prozac, got better, then when did you stop? And when did the CFS symptoms start, and when did you try Citalopram (I was put on the related...
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    Antidepressant Concerns and Use in CFS Population: Your Experience or Research?

    Thanks @heapsreal -- sounds like you have some experience with ADs. When did your CFS symptoms start, and when did you first try antidepressants? Did you have any side-effects from the ADs or see any symptom relief? Thanks for any details of your experience :)
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    Antidepressant Concerns and Use in CFS Population: Your Experience or Research?

    Wondering about peoples' experience with antidepressants and whether anyone knows what proportion of those with CFS have used antidepressants at some point? I have read the persuasive argument that the increase in rates of chronic depression may be related to antidepressant use. Historically...
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    Chelation with Antibiotics: Experience with Multi-System Infectious Disease Syndrome (Horowitz)

    Just wondering if anyone has tried both chelation and antibiotics to treat CFS or Lyme? I was originally diagnosed with having toxic metals that needed to be removed. After a few months of chelation with no improvement, I was diagnosed with Lyme and told I need to take antibiotics -- that the...
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    Horowitz patients

    Hope your move goes well @soxfan and sorry to hear about your crash. Looking forward to the PM when you have a chance! Why don't you think that the mental exhaustion could have been caused by antibiotics? Not sure if you've seen some of the recent research on the intestinal microbiome...
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    Horowitz patients

    @soxfan, sorry for my slow reply, very interested in your response but saw it late and a bit tired these days too. You mentioned that you can PM me what you've tried, that would be very much appreciated, thanks :) You note that you didn't start to get PEM until 2010, six years after your...
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    Horowitz patients

    Hi @Dufresne -- thanks for the replies. My Lyme diagnosis is via an LLMD and based on tests from Infectolab, the ELISPOT and CD57 both being positive. I was negative based on the CDC tests (EIA result was negative, so the Western Blot was not undertaken). One of the ways I would feel more...
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    Horowitz patients

    Thanks @soxfan -- no problem with the length, I'm interested in your experience! :) Given the progress you felt from the antibiotics what is it that makes you not want to try them again? The side-effects were too strong? And what was your experience with metal detoxification -- did you do...
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    Norman Doige Book [2015] on Neuroplasticity and Healing the Brain + [TDCS]

    I don't recall the specific resources but a combination of sites and YouTube videos found through Google using TDCS as a search term ("build TDCS" as a search term or something like that). The instructions and resources were pretty straightforward. I don't think the instructions I found had the...
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    Horowitz patients

    Thanks @soxfan - very sorry to hear you didn't experience improvements but thanks very much for sharing your story. How did your function/symptoms change during the treatment? It sounds like you felt you had some changes as you describe a "relapse" from going off of IV Rocephin. Would you go...
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    Horowitz patients

    Thanks @Dufresne -- have you had a Lyme diagnosis and/or treatment as well? Anything to report about it if so -- who you worked with/what you did, for how long, changes in your functioning (e.g., from housebound to working, or part-time to full-time working)? Of the 40ish folks I've seen with...
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    Horowitz patients

    Thanks @justy -- great you've found a doctor you trust. What has your experience with the Lyme treatments been like? How long have you been at it and have you experienced a change in your functioning -- going from housebound to working or working part-time to full-time or anything like that...
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    Horowitz patients

    Thanks @msf, good suggestion -- I will take a look at the American Lyme forums. I have looked at about 40 folks on this website who have reported a Lyme diagnosis though, and not found anyone who was treated by him until @soxfan so that is still curious to me. With 12,000 treated I would expect...
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    Horowitz patients

    I've been searching the forums here for stories from people that have been treated by Horowitz, but am not finding much. Anyone have experience with him? I have seen him claim to have treated 12,000 people (in his book) with about a 90% success rate (in an interview), so it seems incongruent...
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    No Brakes on Adrenaline

    An excessive stress response and inability for the adrenaline system to stop characterizes my problems. I feel as though my condition is a hybrid of CFS and PTSD (Post-Traumatic Stress Disorder). On one hand, I am more functional, particularly recently, than many others with CFS in that I can...
  27. D

    Wellbutrin?

    Wellbutrin made me worse. I was prescribed it in 1999 and felt terrible -- heightened stress and anxiety for the months I was encouraged to use it, and that went away within days of stopping it.
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    Transient improvement from antibiotics - help be troubleshoot

    Hi @Mya Symons - hope this finds you well. I noticed that in this post you described feeling better on Rocephin, and I'm wondering if you tried it again, and if not why not? I ask because I have been advised to try Rocephin for a Lyme diagnosis with CFS symptoms. Thanks for any insight you can...
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    Gamma globulin

    Hi @susank -- noticing you had planned to resume your experiments with Rocephin. Wondering if you ended up trying that, and what the results were -- did your symptoms improve and stay away, how were the side effects, and what is your status? Hoping this finds you well and thanks for any insight...
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    Lyme conference Dr H. Dr B. etc - a must read

    Hi MaryB, hope all is well -- you noted symptom remission after a month on Rocephin IV. I have been diagnosed with Lyme and suggested that I try Rocephin IV, but I have not seen many positive experiences on it and I'm wondering what your symptoms were like before, during and after Rocephin and...