Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
Discuss the article on the Forums.

Ceftriaxone Rocephin: Experiences and Advice

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by DataDude, May 29, 2015.

  1. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 about what worked or didn't? Would you recommend it? I have been diagnosed with both CFS and Lyme and been prescribed IV Ceftriaxone for the Lyme.

    My analysis of forum user experiences does not suggest it is very helpful, but perhaps my understanding is incomplete. Happy to learn more.

    Through the forums, I identified a total of 30 people who seemed to have tried Ceftriaxone. Of these:

    0 (0%) were in complete remission from Lyme/CFS
    2 (12%) reported stable improvement, though still sick and trying other options
    4 (24%) reported temporary improvements that went away
    11 (65%) reported no improvement or negative experiences
    17 people provided some information on efficacy, 13 people did not

    5 (45%) reported extreme side effects (see thread for examples)
    2 (18%) reported strong side effects
    1 (9%) reported mild side effects
    3 (27%) reported no side effects
    11 people provided side effects information, 19 people did not

    @physicsstudent13 @Clodomir @Helen @medfeb @abporter
    @Riverview @Timaca @soxfan @Valentijn @Roxanne Martin
    @maryb @Vitalic @xrunner @anncavan @lizw118
    @nofuture @Thinktank @Jenny @Daffodil @Hip @filfla4 @melike @redo @Mya Symons
    @Dr. Yes
     
    Last edited: May 30, 2015
    Hanna and duncan like this.
  2. msf

    msf Senior Member

    Messages:
    3,210
    Likes:
    4,504
    Were all the people you mentioned being administered it for Lyme? If they were, it's not too surprising it didn't have a massive effect, as Lyme has been shown to still be present in rhesus macaques who were treated with first Ceftriaxone and then Doxycycline. I think some LLMDs now see this as a necessary first step in a patient's treatment, but do not expect it to cure them. I would imagine that they are looking more at reducing the amount of Borrelia in the body, and particularly the CNS. They then treat the patient with other antibiotics and herbs in order to get rid of the infection, or at least to hold it in check.

    Also, I would query your use of the term 'extreme side effects'. I understand this to mean life-threatening, or potentially life-threatening side effects - if this is what you found, I (and many others) would like to know what they were.
     
    maryb, beaker, Sushi and 3 others like this.
  3. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 perhaps these things are life threatening if continued? These side-effects seem to warrant a stronger adjective than "strong" but I'm open to suggestions if you feel a different word would be better.

    2. Most of those I found were Lyme patients, though they didn't always specify. As not everyone specified their diagnosis, it was not practical for me to separate them, and as I have both diagnoses I'm interested in both experiences.

    Do you have research, clinical, or personal experience that you can share with the folks following this thread? Are you advocating ceftriaxone as useful for CFS in certain conditions and if so what are those conditions? Thanks for sharing msf! :)
     
  4. Helen

    Helen Senior Member

    Messages:
    2,088
    Likes:
    3,242
    Hi @DataDude ,

    I have had 6 weeks of IV Ceftriaxone and 6 weeks of IV Azitromax (among others) for Lyme. I have improved a lot, but my doctor told it will probably take another year before my immune system is restored a. The side effects were rather hard to handle although they could be expected. I think, depending on how long time you have been infected you will need a treatment with more than Cefiaxtrone or not.. People in my country with a Bell´s palsy due to an acute Lyme usually get cured by some weeks of Cefiaxtrone.

    PS Before the IV abx I had been on pulsed oral abx for almost a year. Although that I had a strong positive Western blot (8 bands) as well as positive IgM and IgG afterwards. Clearly, IV abx is necessary in some cases.
     
    Last edited: May 29, 2015
    justy, Sushi, paolo and 1 other person like this.
  5. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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) but positive using Elispot and CD-57 (which are not recognized by the CDC). So I am especially interested in whether Ceftriaxone is effective in cases of Lyme which do not meet the CDC's recommended diagnostic criteria.

    Great that you're having a positive experience in any case, congratulations! Have you been using probiotic supplementation, and can you provide any other insight into your history and what you feel has made your treatment successful? Thanks very much for sharing Helen!
     
    Last edited: May 30, 2015
  6. Helen

    Helen Senior Member

    Messages:
    2,088
    Likes:
    3,242
    Glad if I can help with my experiences as a "single-case" :). Maybe it was the combination with IV Azitromax that helped. ( Did I post about improvement on only Cefiaxtrone? Can´t see this fact clearly in my logg) The first is expected to kill extracellular bacterias and the second the intracellular ones.

    About getting diagnosed it was a long, sad story before I saw KDM. Before, I had two spinal taps without pleocytosis so then "it couldn´t be Lyme" though I had very high antibodies, both IgG and IgM, both increasing ( although I also got Doxycycline pulsed with Azitromycine for almost a year ). KDM told that late stage Lyme seldom show up in spinal fluid. My symptoms were typical for Neuroborreliosis. I think the symptoms shouldn´t be neglected in diagnosing as most other tests are pretty invalid. I also had a LTT test from Infectolabs that was negative (0-0-1) and a negative PCR. Still no diagnosis, but some doctors wanted to treat me with oral abx due to the typical symptoms.

    Then I saw KDM and a Westernblot from Redlabs was clearly positive, as mentioned above, as well as the IgG and IgM. I also had immune markers that all were typical for Lyme, according to him. Two co-infections also pointed to Lyme.

    I took and still take, as I am also getting treatment for Yersinia, strong probiotics; VSL-#3 and others. It should have been Mutaflor but I couldn´t get it. I also take Biofilm Defence by Kirkman.

    I think it is the thourough and long treatment based on my lab results and symptoms that has helped. As you can see I also had a long treatment before, but it probably didn´t pass the blood brain barrier as neccessary. I hope that you will find something in my story useful!
     
    Last edited: May 30, 2015
    maryb, Hanna, Sushi and 3 others like this.
  7. duncan

    duncan Senior Member

    Messages:
    2,085
    Likes:
    4,520
    In the US, there are political issues also swirling around Rocephin use, thanks to the IDSA.

    You'd think it would be as simple as if you suspect NB, try Rocephin. I have a couple of clinicians recommending I do IV Rocephin for this very same reason, and it seems like good logic on paper. To date, I have declined because: a)I think there are very good alternatives, b) politics.

    I have a quick question, though, for those like Helen who have had spinal taps. Really, the main determinant when scrutinizing CSF these days is the AI. That is certainly true in Europe. I wouldn't be surprised if when the IDSA releases its new guidelines, it will recommend an AI metric for the US as well.

    I had a lumbar puncture. I had a low positive ELISA. My tester was a researcher, who declined to do a WB or C6 on my spinal fluid. Instead, that researcher went for the AI value, which was negative. When I pushed for an explanation as to why a WB or C6 wasn't employed, I was told they are not good metrics for CSF.

    Only, for the life of me I cannot find any literature that has convinced me that AI is any better a metric than an ELISA or WB in CSF exams when is comes to very late stage NB. So I agree with KDM.

    Has anyone gotten positive AI results? Has anyone spoken with their clinician about the inherent strengths and/or weaknesses of the AI value when looking for signs of Borrelia in patients' CSF?
     
    DataDude likes this.
  8. Helen

    Helen Senior Member

    Messages:
    2,088
    Likes:
    3,242
    FWIW, definitely. A lab specialist and Lyme researcher told my doctor friend after analyzing the tests that "The official meaning is that she hasn´t got Lyme but I think you should give here IV antibiotics". My doctor friend didn´t dare to, as the "FDA" here would make her a visit. It took me another year and 10.000 dollars to get it.
     
    Last edited: May 29, 2015
    Sushi, Valentijn and duncan like this.
  9. msf

    msf Senior Member

    Messages:
    3,210
    Likes:
    4,504
    Hi Datadude, I didn't realise you had another level - perhaps you should have mentioned that no one had 'very extreme' side effects.

    I do not advocate anything because I am not a doctor and even they aren't supposed to do that on this forum. I was merely pointing out that although Ceftriaxone is commonly used in Chronic Lyme, it does not always cure the patient.
     
  10. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,850
    We've had at least one person on the forums at times who has claimed permanent damage from pretty much every imaginable drug, supplement, and medical practitioner he's encountered. So I think it's rather important to determine 1) if someone is an ME patient, 2) why they're taking the drug, and 3) how they characterize their experiences in general.

    Additionally, antibiotics targeting spirochetes, such as Lyme or Syphilis, are expected to trigger a classic Jarisch-Herxheimer reaction. This can include fevers, headaches, and new or different or more severe OI symptoms. Hence such a reaction isn't exactly a negative thing, even if it's unpleasant to experience.

    And finally, as someone else mentioned, one antibiotic alone is not sufficient to treat Lyme, which is probably the primary use here for that antibiotic. Multiple antibiotics are necessary, and over an extended period of time. Since Rocephin was the first antibiotic prescribed to me in treating Lyme, I would have been rather shocked if it cured me or made a substantial dent in my ME symptoms. This also makes it pretty impossible and irrational to attribute most improvements to a single antibiotic or other drug.

    I doubt only one person reported any sustained improvement. I think many of us have had improved cognitive functioning since taking Rocephin. It has been sustained for me thus far, though that could also be partially attributable to the other antibiotics I've continued to take since then.
     
    justy, Hanna, Sushi and 3 others like this.
  11. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 history months or years later. We need to find ways to control for people's desire to report good results when none exist, as well as the tendency to report bad results excessively. Thus my request for info from folks with specific experiences :)

    Would be great to hear more details of your experience -- it sounds like you feel you have had sustained benefits from using Ceftriaxone and multiple other antibiotics? How long have you been on antibiotics and what is your status with them -- how much improvement have you seen and how long has it lasted? Were you using for ME, Lyme or something else?

    Agree that some of the side effects could be "herxing," and therefore not necessarily bad. In the case of the "extreme" reactions, all of the forum users chose to stop because of the reactions. Whether those were good or bad decisions, I can't say.


     
    Last edited: May 29, 2015
  12. paolo

    paolo Senior Member

    Messages:
    197
    Likes:
    553
    Italy
    I was on IV Ceftriaxone for 4 weeks, for Lyme disease. I experienced a rapid and substantial cognitive improvement. But after the end of the therapy I relapsed.

    I wondered if this effect was really due to its antibiotic property. Ceftriaxone is well known for its ability to kill spirochetes which are replicating, since it interferes with the syntesis of the peptidoglycan layer (the mechanical support of the cell wall). Nevertheless beta lactam antibiotics (such as ceftriaxone, penicillin, amoxicillin...) are also known to stimulate the glutamate transporter so to reduce exitotossicity due to glutamate.

    As you know, exitotossicity due to glutamate is a strong neurodegenerative process which can contribute to cognitive imparment in many neurological illness and brain injuries (such as chronic infections).

    So I was unable to determine if the temporary improvment while on ceftriaxone was due -in my own case- to its neuroprotective activity or to its antimicrobial property.
     
    Sushi and DataDude like this.
  13. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 in combination.

    Interesting speculation about the neuroprotective effects. I had a similar experience and thought. I had a great day -- feeling strong concentration, positive mood, and energy -- about three days into starting an antifungal, Fluconazole. I have since wondered if it was some other property of the drug responsible for this great experience (which went away and was replaced by rather bad days), or was it attacking a fungal infection? Or was something else entirely responsible for the "great day"? I also ended up with very bad blood test results a few days after the Fluconazole, so have hesitated to try it again.




    h
     
    paolo likes this.
  14. paolo

    paolo Senior Member

    Messages:
    197
    Likes:
    553
    Italy
    I had periodic relapses while on ceftriaxone. I didn't experience other side effects. It was a positive experience.

    I'm trying with other antibiotics, but ceftriaxone has been the best, so far. These have been my therapeutic attempts:

    • Ceftiaxone IV, 2 grams/die for one month (along with Amantaine 100mg/die for L-forms). Impressive improvements from the third day in cognition (I was able to read all the day), Orthostatic Intollerance and Fatigue. No improvment in PEM. I relapsed soon after the end of Ceftriaxone.
    • Amoxicilline 3 grams/die for one month (along with Amantadine 100mg/die). As with ceftriaxone. I relapsed after the end of treatment.
    • Penicillin G, 1200.000 UI, one shot every two week. Improvement for 2-3 day after the shot.
    • Mynocicline 200 mg/die with Idrossiclorochine for 20 days. No improvement.
    • Penicillin G IV, 20.000.000 UI/die with Metronidaxole IV 1g/die, for two weeks. Improvement during the second week, as with Ceftriaxone. I relapsed soon after the end of treatment.
    • Doxycicline 200mg/die with Idrossiclorochine for one month. No improvement.
    • Azytromicine 500 mg/die for 9 days, then 500 mg/die for three days a week for three weeks. Only sporadic improvement.
    So my improvements have been associated with beta lactams (ceftriaxone, penicillin G, amoxicilline). But those ABX are not considered to be curative in Lyme by many Physicians, because they only address extracellular cell wall spirochetes, while in persistent Lyme disease the main bacterial load is due to intracellular bacteria and L form bacteria (L form = cell wall deficient). So it sounds very strange to me.

    Yes, I'm taking probiotics as VLS3 and Saccaromices boulardi, in order to reduce adverse effects on gut flora and the spreading of Candida albicans and Clostridium difficilis.
     
    Last edited: May 29, 2015
    DataDude likes this.
  15. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    14,796
    Likes:
    22,480
    Albuquerque
    There are two other forum members who took IV Rocephin who are not on your list and did report very positive effects, though in one case they only lasted a couple of months. They did not report this on the forum so I will not name them.

    Sushi
     
  16. BellaSC

    BellaSC

    Messages:
    69
    Likes:
    76
    I was on an IV of Rosephin and Flagyl for 4 weeks for a severe case of Osteomyelitis (2008) - a rare and very serious bone infection in my jaw. It was New Years Eve and I started itching like crazy (head, hands and feet)....I knew that I was having an allergic reaction. Why it took a month for me to react to the meds I have no idea, but was immediately taken off the IV and put onto Clindamycin IV for another 5 months.
    It was shortly after that I was diagnosed with ME/ CFS.
    Both of these meds are now on my allergy list.
     
    DataDude likes this.
  17. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 she has experienced sustained cognitive improvements, so I will update this post to reflect that.

    I searched Ceftriaxone, Rocephin, and various alternate spelling of each and read every post I found, so if others had positive experiences I don't think they wrote about them using these names. Should anyone wish to add experiences here or message me, I would be happy to update the data, as I shared it not as an endpoint but to learn. If people don't write about their experiences here or elsewhere, I am not able to account for it. I'm just describing what people have shared. We might assume there are positive stories people haven't shared, but it is equally likely there are negative experiences people didn't write either, so I think what people have shared is useful to document and probably representative :)


     
  18. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 developing PEM years into it but doing antibiotics in the interim. Do you think that the timing of your CFS symptoms so closely to the antibiotic use reflects a relationship between antibiotics and the symptoms, or that the initial infection bone infection was the proximate cause, or have any other theories?

    What is your status with CFS now and have you found any treatments effective? Thanks for sharing and hope that you're as well as can be.



     
  19. duncan

    duncan Senior Member

    Messages:
    2,085
    Likes:
    4,520
    DataDude, just for the sake of a relevant read, you may want to check out Kim Lewis et al study just released May 26 on treating Bb persister cells with Ceftriaxone. It's an in vitro effort, so keep that in mind. But his four-pulse doses of Ceftriaxone is an innovative approach, and he reports it eliminated all persisters in culture.

    No in vivo studies to follow-up yet, that I am aware of. So, extrapolating to how the approach would work on infected people is unwise.
     
    maryb and DataDude like this.
  20. DataDude

    DataDude

    Messages:
    44
    Likes:
    18
    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 are involved in my symptoms though the the IgM levels are low, and also whether there is something else which hasn't been tested for.

    What is your strategy for next steps -- will you continue trying different ABX protocols?

    With probiotics, any thoughts on Mutaflor? I did some research on that on the forums, and it seemed associated with a few more positive reports than Ceftriaxone. I will try to summarize what I found in another thread. There were folks that reacted poorly to Mutaflor as well though.

    Sounds like you have done great research on antibiotics, thanks for sharing your experience. I will look up what you've described. I don't understand the types of antibiotics or their mechanisms of action at this point.


     

See more popular forum discussions.

Share This Page