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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Antibiotics

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Daffodil, Nov 3, 2013.

  1. snowathlete

    snowathlete

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    sorry to hear of the rough time you've had/are having. I suspect you are right that it is the VSL3 causing that many bm's. I know it is not uncommon for some people not to tolerate vsl3. It is a huge dose of 8 good (probably) bacteria. Think its like 450 billion or something per dose, compared to what I take each day which is 6 billion (tablets). I may be trying vsl3 soon as its been studied for UC but I did read that some dont get on with it at all. If you can't get the right probiotic, perhaps just buy one you can get - I ran out the last week or two and have been using one from a local shop - solgar brand, but basically the same bacterial strains.

    I do get that brain swollen feeling too, basically all the time, but worse at times - I am just getting rid of a bad cold and it has been a whole lot worse while I've had it. Perhaps related to specific types of inflammation.

    I found that cheating on my diet now causes major worsening of symptoms, much more than I expected.

    Buhner's book on Bartonella (and mycoplasma) are really good, I found. Read it on my kindle.

    I can totally relate to your feeling tired of it all. and its ok to feel depressed about it too! I often feel the same. Hope you turn a corner. Keep us posted.
    merylg and Daffodil like this.
  2. xrunner

    xrunner Senior Member

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    I took it for some time also for Borrelia and Bartonella and the vsl3 as well.
  3. Daffodil

    Daffodil Senior Member

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    hi xrunner. did it help?
  4. xrunner

    xrunner Senior Member

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    Hi,
    Yes and no. I took it together with Azithromycin and Rifampin (and Boluoke) and helped rid of Bartonella.
    For Borrelia it was a bit more complicated. I alternated with Flagyl which seemed more effective.
    But they seemed to work only for short periods, so I took regular breaks but all up to a point and after that they did not seem to work as well, after that the maf314 and other were key for me.
  5. Daffodil

    Daffodil Senior Member

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    thanks, xrunner. so you are doing pretty well now?

    i am going through a hell right now :-/

    xoxox
  6. xrunner

    xrunner Senior Member

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    I'm sorry to hear you're not too well. I hope your dr can sort you out. If you have Bartonella it shouldn't take that long to resolve it. The Borrelia is usually a longer game.
    The thing with our illness, at least the way I think about mine, is that nobody knows the true cause, in spite of the tests and all the rest so it can be a long trial and error process. As for me, I'm not cured nor where I'd like to be but I can't complain. I haven't taken anything for several months and I haven't experienced any pem or relapse and I feel grateful for that.
    Tito likes this.
  7. Daffodil

    Daffodil Senior Member

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    xrunner...you have given me hope:)
  8. Daffodil

    Daffodil Senior Member

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    hi all. after experiencing increased energy on the antibiotics/diet/anti-inflammatories, I am sort of in a downturn. more inflammation, fatigue, fog, malaise, lymph node aches, rectal bleeding :eek:. this could be partly due to a little cheating on diet but i really don't know.

    another very worrisome development is increasing chest pain, which I blame on the AZT I took. we will see what happens when I begin IV antibiotics. I really hope I tolerate them...since my cardiac issues started, I have been unable to tolerate some IV's, such as glutathione or Meyer's cocktail..the chest pain gets very bad. I am always worried I will have a heart attack.

    I am unable to take VSL-3, so I am taking a weak, store-bought probiotic and trying to eat more fermented foods such as kimchi.
  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi Daf. I have been taking ABs for suspected lyme, but had no testing - problematic in Australia and expensive. I have all the neuro symptoms etc. My theory is that if I don't have Borrelia, then I probably have something else that the ABs can work on. In Australia, the govt doesn't recognize Borrelia, so even if I tested positive, there would be some doubt about the validity of the tests. I have tested positive for mycoplasmas a couple of years ago, but was negative on more recent tests. I suspect the more recent tests are wrong.

    Started on Plaquenil for a couple of months, then mino, then bactrim. Ended up in Emergency three times till someone worked out it was the bactrim (that someone being me, emergency were useless). Had a month or two break to recover then started back on mino and penicillin injections, and 2 weeks ago azithromycin. Presumably the penicillin is to replace the Plaquenil and bactrim. I don't think I am the only one to run into trouble with the Plaquenil and bactrim, since there are a few other patients getting the injections.

    No real improvement, though I am able to consistently do a little more in exercises with measurably less PEM. Nothing to get too excited about. In the last couple of days I may have less head congestion (if that means anything), but no lessening of most neuro issues. It is very hot here atm, and I would typically feel pretty bad this time of the year, so it is hard to objectively gauge improvements. In short, I have improved, but only a little.

    I have put on a bit of muscle, but only a little strength. I am not all that hopeful, since I have been on various ABs for about 6 mths now. However still have to go thru Flagyl cycle, which from past experience with another nitroimidazole several years ago, may make a difference.

    I get a lot of bloating. from the Azithromycin I think, and very loose motions, but only once or twice a day. The day after the penicillin injection (once a week) is pretty much a wipe out. I get severe muscle pain at the site of the injection for about 4 days, not sure why this is. Requires hot and cold packs. No other real side effects, other than for the first few days after starting mino and Azithromycin which is to be expected.

    I have avoided probiotics because the literature is generally controlled by commercial interests (biased) and somewhat confused. It is not uncommon for people with ME to have negative effects from probiotics.

    Not sure if this has been of any use to you, but at least you know you are not alone :) .
    Last edited: Dec 28, 2013
    merylg and heapsreal like this.
  10. Daffodil

    Daffodil Senior Member

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    hi Rusty. sorry you are also going through so much. Canada is the same..no real lyme testing or treatment.

    May I ask why you are taking AZT? I am 100% sure i have cardiomyopathy from having taken it, or maybe from another NRTI I am on. I had excrutiating chest pain while I was on it but i was so desperate at the time, i stayed on it almost 2 years.

    I also have a little more energy on the antibiotics and for a while, it was more than a little.

    I know I have said this so many times, but I just want the suffering to end now. It's just too much and I am just too tired.
  11. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania

    Yeah Daffodil

    I definitely comprehend with that.
    Just so tired from all of this.

    I've been thinking of setting an app. with
    Dr K . Meirleir.

    I know he cant do much. Just want someone
    to listen to my sad sad story I guess.

    Hope you enjoy new years day.

    Chill.
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Sorry, brain fog. Was reading an earlier post in this thread and curiously plucked it out. I meant Azithromycin. Soon to start Clindamycin.
  13. Daffodil

    Daffodil Senior Member

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    just wanted to report that the last 10 days have been extremely difficult due to worsening chest pain. it is hard to lay on my back or even lift my left arm without my heart feeling bad. i also have waves of nausea and wake up in the middle of the night with chest discomfort which always radiates into my left arm. i also have a feeling of heaviness in my left chest and left arm.

    from everything i have read, this seems like cardiomyopathy. don't what is going on..if its cardiac damage from the past or something happening with the antibiotics. i have read that azithromycin can cause cardiac death from bacteria from the gut i think. i am wondering if other antibiotics can do something, too.

    i am seeing a cardiologist on tues. but i dont know if she will know anything about CFS or leaky gut.

    i am also not sure if i should stop antibiotic treatment for a while....if i should go to reno for IV antibiotics...what i should do... i guess i will wait and see what the local cardio says.
  14. maryb

    maryb iherb code TAK122

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    @Daffodil
    If you think for one minute this chest pain is linked to your antibiotics I wouldn't hesitate in stopping, what is there to lose? You can always start again if it proves not to be the case.

    If the antibiotics are killing bacteria at a rate at which you body can't process the toxins, the toxins will make you feel pretty sick. I don't know about any risk to the heart from the a/biotic you are on but don't take the risk is you are worried.

    I get that you may have to feel a little worse in order for your body to heal but I don't believe negative major shifts are what my body needs. Its done me well for a long time.
  15. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    I understand you're providing safe and cautious advice Mary. However, she cannot simply continue and discontinue ABX whenever she feels like it. With ABX, you have one shot at overwhelming bugs with high doses as the second time she takes it, the bugs would have become resistant and ABX would be useless.

    That is precisely why these bugs have survived for so long and been passed on generations and generations from mothers giving birth.

    KDM, H.Butt and others have been looking for ABX which completely whipes out all bacteria in order to "reboot" the body. Once they find that, CFS would be cured.
  16. Daffodil

    Daffodil Senior Member

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    hi all. thanks for the replies. on Saturday, I woke up drenched in sweat and then felt a little bit better during the day. the same thing happened just now, Sunday. KDM said night sweats are related to leaky gut I think...?

    anyway, I never had chest pain like this before I took azt so even if the antibiotics might be stressing out my body somehow, I just know the azt has weakened my heart considerably...I even had excrutiating chest pain while on the drug! ugh....

    overall, I am still much better than I was 2 yrs ago and after almost 21 years of illness, I know I should not expect to come out unscathed, but I still cannot help feeling frustrated and depressed.

    xo
  17. Daffodil

    Daffodil Senior Member

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    another thing is...I have been able to follow my diet maybe 75% but still find myself messing up a lot. part of it is not having things on hand at all times; I am too sick to shop several times a weak, there are items I need not available close by, I do not drive, and just cannot cook all day (I eat 4 - 5 meals a day!) I just don't understand how people are doing it, especially living with someone else.
  18. Tito

    Tito Senior Member

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    Daffodil,

    The symptoms you describe are worrying. I have heard many times that you have to get worse before getting better. In my view, this is BS. What you experience is a clear deterioration of your health. This is way beyond herxing. Antibiotics are a toll on the liver, and they allow proliferation of fungi. Some antibiotics are also toxic on other organs.

    Probiotics are bacteria. There is no such thing as good or bad bacteria. That is a marketing argument. What is relevant is the number of each of them, the variety and the pathogenicity. The body needs a large variety of low pathogenic bacterias, so that the bacteria compete against each other (and against fungi) so their respective populations do not increase above a level that is pathogenic for the human body.

    It makes no sense to take antibiotics and probiotics at the same time. You just kill the bacteria you have just ingested. There is also another problem that is the interaction between the numerous drugs and supplements people take. KDM recently told me that GcMAF and Nexavir did not work. So let's forget about them.

    I advise you to think long and hard about IV antibiotics, especially if you suspect heart problems. If you are already suffering that badly with tablets, it will be much worse with IV.

    Daffodil, have you tried to give your body a rest for a couple of months and just take nothing? I have noticed that you persisted for months with GcMAF and Nexavir despite being unwell. Now you follow the same approach with antibiotics. It must be really hard for your body to deal with all these molecules to break down and eliminate. And i am not even talking about the exhaustion of going there for the infusions, etc. It is sometimes difficult to accept the idea that doing nothing IS the best thing to do.

    The purpose of my message is not to be unpleasant or rude, but it is worrying to read how bad you are.

    Good luck!
    maryb likes this.
  19. maryb

    maryb iherb code TAK122

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    @Jon_Tradicionali
    I understand all about antibiotics and the resistance possible when not taking a full dose etc. What I'm talking about here are daffs worrying chest pains - not a normal response to a/biotics.

    @Daffodil
    good to hear you had some sweats daff, I eventually had some after a week of feeling very sick and they do seem to make you feel better, so a good response from your body.

    I get it on the diet totally - all I've had for over a week is gluten free toast and water, some packet veg and frozen chicken thighs that I buy by the bucketload. What on earth can you eat when you're sick with a diet like this - my hubby has lived off salad and pizza since I've been ill - no chance of training him now after all these years. My son have been cross that he hasn't cooked for me - its not his fault - its mine.....

    And no way on earth am I touching sugar again - I've been off it for 4/5yrs and seem to have drifted back on and off - this time its all or nothing
  20. Daffodil

    Daffodil Senior Member

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    thanks everyone. it really makes me happy that i am not alone in all this.

    tito....you mentioned that KDM told you that nexavir and gcmaf dont work....i dont understand this...i thought he was prescribing this stuff right now? when did he tell you that?

    i just have no idea what to do. i stopped the strong probiotics and am taking weak ones now...but for all i know, thats bad too.

    the pain in my chest is the same kind of pain i had while on AZT, just less. i have a bad feeling that nothing will show up on tests, either...thats how it goes with me.

    just so confused. sometimes i really don't care if i have cardiac arrest. i know this sounds awful, but i just am not sure i care anymore.

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