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Rocephin shots

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by lizw118, Apr 16, 2014.

  1. lizw118

    lizw118 Senior Member

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    Hi all
    I have CFS and lyme and a host of other related issues (adrenal, thyroid and sinus problems). My doctor started giving me shots of rocephin. I have had two so far. After my first shot I felt horrible for the first day or two after but then I felt almost totally well. I believe a lot of my issues are in my brain, and maybe my brain might be swollen(?) I now even think that my sinus issues might be tied to the brian swelling. At any rate, the rocephin and the flagyl that I am already taking seem to be really helping. Does anyone else have experience with this? I am certainly not expecting this improvement to last, but it's nice while I have it. Is there anything else I can do about brain inflammation?
     
  2. Ema

    Ema Senior Member

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    Glad to hear that you are doing well on the abx!

    This is the best book I've found on brain health so far...

    http://brainhealthbook.com
     
    Little Bluestem likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Interesting that you were getting rocephin injections. What is the difference in effect between getting injections and getting it IV?

    Sushi
     
  4. Daffodil

    Daffodil Senior Member

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    hi liz. i have been severely ill for over 20 yrs and just tried a few weeks of IV Rocpehin. my fog has been unbearably horrible throughout my illness, and the Rocephin almost made my brain normal again. I was crying - couldnt believe how much it helped me. Unfortunately, I had severe diarrhea on it so I couldnt stay on it too long.

    Maybe it is killing Borrelia or doing something else? I know it is neuroprotective / anti-inflammatory and i was reading about how it even helps curb cocaine addiction....so who knows why it is working.

    Since I have been off it, all my fog is back, my neck and lymph nodes ache like crazy and I am miserable again - even though I am on an oral alternative now (Ceftin).

    xoxox
     
  5. lizw118

    lizw118 Senior Member

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    Hi Sushi,
    I'm not sure what the difference is. My guess is maybe that the shots are less frequent and maybe there is less of the medication delivered into the system than with an I.V. I don't want to do I.V. ABX if I can avoid it so I like the shots. Did you ever try Ceftin?
    Liz
     
  6. lizw118

    lizw118 Senior Member

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    Hi Daffodil,
    Same here. I had a really positive reaction in terms of cognitive abilities, mood, and head/sinus ache pressure issues. My hearing even improved after the initial bad symptoms. I wish I could find a medication that I could stay on long-term that has these effects. I am so sorry about the diarrhea. Is the ceftin helping? I took Ceftin before the Rocephin and it also helped, although not as dramatically as the shots. Would increasing the dose help you, do you think? Or do you think it is the difference in the drug itself.
    Where did you read about the neuroprotective anti-inflammatory stuff? Is there anything else that does that?
    I wonder how long we can stay on this stuff? Did your doctor tell you?
     
  7. lizw118

    lizw118 Senior Member

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    Thanks Ema,
    Does the book have any suggestions for supplements or ways to reduce brain inflammation?
    Liz
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I haven't tried Ceftin. I am being treated for Bartonella and that is done differently from Borrelia.

    Sushi
     
  9. Ema

    Ema Senior Member

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    Yes.
     
  10. Hip

    Hip Senior Member

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    This is very interesting.

    On my computer, I made some notes to myself about ceftriaxone (Rocephin) theoretically being able to improve ME/CFS symptoms. This is by virtue of the fact that this drug increases the expression and activity of the GLT-1 (EAAT2) glutamate transporters in the brain, and thereby enables these glutamate transporters to pull excess glutamate out of the brain. This reduces glutamate toxicity and glutamate overstimulation in the brain. Refs: 1 2 3

    I think this may explain why ceftriaxone has improved your brain fog and ME/CFS symptom, @Daffodil and @lizw118.

    @Marco may want to comment on this.

    More info on glutamate and ME/CFS: Dr Paul Cheney's views, Marco's blog about glutamate causing ME/CFS symptoms, and my post on how neuroinflammation-derived glutamate may cause generalized anxiety disorder.
     
    Last edited: Apr 28, 2014
    Lou likes this.
  11. lizw118

    lizw118 Senior Member

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    Hi Hip, I had a metametrix ION Profile test some years bad that showed excitotoxicity in my brain from glutamate, I think (if I remember right). So yes, this does make sense. I have noticed a drug called Riluzole mentioned in some articles about this problem in other conditions. Riluzole apparently inhibits the release of glutamate in the brain--it's being used for ALS. I wonder if a drug like that would help us and if so, is it a safe drug to take? Or is there an anti glutamate type drug that is safe longterm? I believe I have seen some other posts of yours about this which have been very helpful about certain supplements like magnesium which help you, right? You should definitely try rocephin if you can.
     
  12. medfeb

    medfeb Senior Member

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    Interesting that you are getting both Flagyl and Rocephin.

    My son did 90 days of IV Rocephin and it did not help. But I saw a Lyme doctor at the Stanford meeting and she said that it was necessary to go after the three forms of Lyme at once - she used Rocephin and I am pretty sure she said flagyl plus one other antibiotic. I'm wondering if the combination is important.
     
  13. Daffodil

    Daffodil Senior Member

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    yes....i was also reading that one should take something else with the Rocephin....for the "cyst form" of bacteria, or something..?

    if rocephin's positive affect is from normalization of glutamate levels, would it take weeks to work? it took a while for me to notice a change.

    i have no idea how long you can stay on rocepin but i think after 6 weeks, there is probably some risk of C Diff infection...but i am not sure about this or whether probiotics might curb this risk (i cannot tolerate most probiotics). i have heard of people staying on it for several months.

    i told my doctor that i am a lot worse after stopping the rocephin and he today recommended i add doxycycline to the ceftin. however, doxycycline caused me intolerable diarrhea in the past so he will likely suggest minocycline instead, as in the past.

    i wish i knew exactly why rocephin works so well while you take it :-/
     
    lizw118 likes this.
  14. Hip

    Hip Senior Member

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    Riluzole is also in my list of medications that ramp up glutamate clearance from the brain. When I was Googling I found a several medications that can increase the efficacy of the glutamate transporters in the brain (glutamate transporters clear glutamate from the brain). These glutamate transporter boosting drugs and supplements are:


    I tried propentofylline 100 mg x three times a day, but did not notice any benefits. However, the amounts used in the study cited above work out to an equivalent oral dose of 30 grams for a human being, which I think is probably far too high (there may be severe side effects) and would be too expensive, since propentofylline is sold in 100 mg tablets. Propentofylline is in fact a medicine used for dogs; the dog oral dosage is 10 mg per kg.

    In terms of mitigating the effects of high glutamate (which acts to over-activate the NMDA receptors), high dose transdermal magnesium is useful, as magnesium blocks the NMDA receptors.
     
    Last edited: Sep 29, 2014
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  15. Hip

    Hip Senior Member

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    By the way, what dose of injectable Rocephin did you take, lizw118? I looked online and found that Rocephin comes in 125 mg, 250 mg, 500 mg and 1000 mg size injections.
     
  16. lizw118

    lizw118 Senior Member

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    Hi Hip, your list is very helpful. Did you try any of the other medications? If so, did you get any benefit? I am inclined to try the citocoline since it's OTC.
    I get a magnesium shot at my doctors which also helps my symptoms. I try transdermal, too, but it doesn't do as much for me. Maybe I should put more on.
    I am not sure of the dose in the rocephin shot. When I go this week I can ask.
    It's too bad the ALA dose is so high to affect the glutamate (according to your list). I worry about getting mercury into my bloodstream with that kind of dosage.
    I will let you know what I find out re dose.
    Thanks
     
  17. Daffodil

    Daffodil Senior Member

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    dare i say that if i could take rocephin forever, i would be cured of CFS
     
    lizw118 likes this.
  18. lizw118

    lizw118 Senior Member

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    If one takes rocephin injections rather than oral rocephin, then would the detrimental side effects of gut bacteria stuff be alleviated? Is it safer to take long term that way?
     
  19. Daffodil

    Daffodil Senior Member

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    hi lizw. I think it is still unsafe. but not everyone gets diarrhea. 2 doctors told me neither of their patients ever reported diarrhea - that I was the only one. also, they tried rocephin in ALS...I assume they were going to give it long term if the trial had worked out.....maybe if you are OK with it, you can just take probiotics with it and keep taking it.??...however, if it is targeting a bacteria, the bacteria could become resistant and then you would be n trouble.
     
    lizw118 likes this.
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Why not give citicoline a try? It if does what it is supposed to, it might give you the same relief.

    Sushi
     
    lizw118 likes this.

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