The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Dysbiosis Treatment with ABX, KDM

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Banana94, Aug 20, 2017.

  1. Banana94

    Banana94

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    Hey all

    Did somebody of KDMs patients had success treating Dysbiosis with Antibiotics? It sounds so wired because ABX can also damage the Flora!
    I have "only" high Bacteroides for which I take Azithromycin for 2 month (4days a week)
     
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  2. herpesbaby

    herpesbaby Senior Member

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    What if you'll take probiotics along with antibiotics?
     
  3. JaimeS

    JaimeS Senior Member

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    Yes, ornidazole was essential to my improvement and marked a turning point for me. But absolutely find a probiotic that works. I'd even go so far as to urge you not to bother with antibiotics until you've found a probiotic that you can tolerate. I didn't, and spent months rebuilding my microbiome. I put the cart before the horse.
     
  4. Banana94

    Banana94

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    Hey Jamie, I'm glad you had success with ABX treatment and the gut.
    Did you get ornidazol from KDM? He prescribed me BioKult. I had never problems with probiotics. I think this should not be a problem..
     
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  5. jpcv

    jpcv Senior Member

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    Hi, what helped me was changing the diet( no gluten, sugar, lactose) , probiotics prescribed by my nutritionist and also
    Kefir.
    I learned from Kefir here in Phoenix Rising. If you want to know morw, read the excelent blog entry by @62milestogojoe .
    If this does´nt work, I would consider some kind of test to detect wich microorganisms are out of place and only then consider some antibiotic
     
  6. JaimeS

    JaimeS Senior Member

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    Yes, I did get it from KDM. Good, re: you have a probiotic. I don't know how much validity there is to this, but I always hear to space out the probiotic and the antibiotic with at least a few hours.
     
  7. Banana94

    Banana94

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    @jpcv
    I ve already changed my diet 100 times. I avoid now gluten, dairy, and I am on a paleo diet. It helps me with my energy but not with my gut. Kefir also doesnt help me. I got diagnosed by KDM with high bacteroides in the colon. Thats why I take ABX.
    @JaimeS i take 4 day ABX followed by 3 days Probiotics
     
  8. jpcv

    jpcv Senior Member

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  9. JaimeS

    JaimeS Senior Member

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    Yes, I was on that diet too and still ended up needing abx. :(

    I mean, take the antibiotic, then 8 hrs later, probiotic, rinse, repeat. ;) I mean to say, keep re-populating your gut with good bacteria even as you kill the negative bacteria. I have no idea how long your particular antibiotic stays in the system, just saying 8 hrs as an example.
     
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  10. Vojta

    Vojta Senior Member

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    KDM destroyed my gut completely (among other things) with his random atbx. I didn't even had any major gut symptoms in the first year of illness. Before "treatment" I could even eat ice cream, fruits, chocolate... Now after his long term atbx I can't even eat plain rice... And problem is not only damage to flora but to the tissue itself.

    Azithromycin for 2 months for just "higher" bacteroides is just crazy!
    Anyway Azithromycin has like 68h half-life and it has biliary excretion so it will present in your gut (unchanged) baasically all the time! I doubt any probiotics would survive that no matter when you take them, they are pretty fragile.

    Also be aware of its potential side effects on heart, you should do ECG before and during long term Azithromycin.

    I wouldn't like to see another person damaged for life by his nonsense treatments.
     
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  11. JES

    JES Senior Member

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    Patients in my country routinely get prescribed around 3 weeks of macrolide (azi/roxithromycin) for mycoplasma pneumoniae, so I don't think it's out of the ordinary if you suspect a bacterial infection to even get a course for 2 months. I took roxithromycin for two months as well, and while it weakened my immune system while I was on it, it left no gut issues and my symptoms of CFS/ME are the same as before the antibiotic. Basically these type of antibiotics get prescribed all the time and I've never heard that they would require an ECG.
     
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  12. Banana94

    Banana94

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    I' m sorry to hear that you feel worse after his treatment. I' ve tried everything with my gut (diet changes etc.) and nothing helped me. It's my last chance to fix it with KDM's treatment.
    Did he prescribed you Fluorchinolon ABX, Vojta?
     
  13. snowathlete

    snowathlete

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    Sorry to hear this, I am sure you are right that you guy was damaged by this treatment from KDM.

    KDM prescribed me combined Rifampin and alternating clarithromycin or telithromycin for ten months for suspected Borrelia and Bartonella. After five months I started passing blood and losing weight. I went back to him and he told me to continue treatment. At around nine months I had a colonoscopy in the UK and was diagnosed with ulcerative colitis, induced by the abx. I had lost a third of my body weight and was in quite a bad state. I then stopped the abx and immediately began to improve but I still have UC and gut problems.

    The most worrying thing for me was a lack of caution at the point an adverse event occurred and seemingly being unaware and not looking for anything in the literature about these drugs causing inflammatory bowel disease - I later found a published case study in a journal of a patient who's UC was traced back to use of Rifampin.

    My mistake was believing him that the two were not related, that probiotics would protect me, and listening to other patients who told me to keep going and I'd get better. In hindsight I can say that these treatments have risks, if people are going to take those risks, stop if you get made worse or have new symptoms. Probiotics will not protect you, all you are taking is a tiny teeny fraction of the friendly bacteria that are supposed to be in your gut; it is like taking a thimble of water a day when you are dying of thirst in the scorching desert.
     
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  14. msf

    msf Senior Member

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    I don´t know which I find more surprising, @snowathlete, that KDM did not stop the antibiotics on hearing that you were passing blood, or that you didn´t (I am not blaming or doubting you). I think this shows that if you do get treatment from an ME doctor in particular, you really need to research as much as you can yourself. I know you have since found out a lot about the gut, but I think it is essential to research things as you are prescribed them. I know some ME patients are too tired/brainfogged to do so, so I fully understand why people don´t, but I think in that case if you don´t have a primary care doctor who is going to keep a close eye on things for you (as you would if the NHS system actually worked), then you are taking a risk regardless of which ME doctor you see.

    I personally have improved a lot from KDM´s treatment, but equally important in my improvement has been me finding out things about diet for myself, as no doctor I have seen (including an NHS gastroenterologist) has given me helpful advice (KDM did say to leave out sugars, but I have found I need to leave out much more than this) with regard to this. That same NHS gastro I mentioned earlier also ordered a colonoscopy to confirm a completely spurious diagnosis, and when I read about the possible risks associated with that I decided that I should not go through with it.

    This was only partially addressed to Snowathelete by the way. I think anyone who undergoes treatment from any ME doctor should be aware of this.
     
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  15. Vojta

    Vojta Senior Member

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    If you actually had any experience with Azithromycin you would notice there is warning about the heart thing on/in the box! It is known and possible risk and if you google it gives you like millions of results. That's why even lyme clinics using long term azithromycin do ECG before and sometimes during treatment when it's long term. This is something patient and doctor should be at least aware of, so please don't confuse patients by denying the existence of the risk.

    I was on ciprofloxacin and moxifloxacin for something else before. Moxifloxacin is nasty stuff. There is huge risk of peripheral neuropathy which many people on this forum got from them. Me too, but mostly reversible as this was before KDM made me much worse.
     
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  16. Vojta

    Vojta Senior Member

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    @snowathlete I'm sorry you got permanent damage by his treatments too. I was on Rifampin, Clarithromycin and Telithromycin too. Unfortunatelly, gut isn't only thing which was damaged. There are more people like us on this forum who suffer from permanent damage because KDM ignores reported side effects and mostly dismisses them as "herx". Same happened to me I also reported suspected toxicity when I was in horrible condition on his IVs in Brussels and he just said "herx" and "continue"...

    @msf I don't know why it is so difficult for you to understand that many patients who come to him are severe and just CAN'T research hours of science stuff every day. Many, including me, were not able to read at all (especiall during and after his "treatments") and many don't have anyone to do that for them. And when you have no other choice of doctors, you trust your only doctor who is supposed to know your case and believe that he wouldn't at least damage you because of negliagence or ignorance. Obvioulsly when he and some of his followers manipulate you into believing that you don't suffer from toxicity but from "herx" and you should stay in his treatments, you just continue until you realize it's already too late. You probably can't imagine being in such horrible condition that you can't make any medical decision for yourself. And last time I checked patient isn't legally responsible for doctor's wrong diagnosis, wrong treatment or failure to stop damaging treatment after reporting side effects. It really sounds you are trying to blame victims here again.
     
  17. snowathlete

    snowathlete

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    I was less experienced back then, this was a few years ago, my brain fog was much worse on the treatment and at that point in my illness I was desperate. It's easy to say in hindsight or as a third person that stopping the treatment much earlier would have been the wise move but when you are in the situation yourself in those circumstances it is less obvious. It's true that people should inform themselves as best they can, but I did do my best at the time. While in hindsight I don't consider myself particularly bright for continuing the treatment, KDM was the trained physician who prescribed it, at the end of the day.

    I tried cutting out this and that, under KDM but none of it helped. I've seen nutrionists under the NHS as part of my UC treatment, but haven't found them useful either. Thanks to the damage to my gut, which was pretty much fine before treatment, I now have severe intolerance to certain things and I had to do a careful exclusion diet to figure out what causes me problems - I cannot tolerate soya, or preservatives, so I can no longer eat bacon and cured meats, etc. and a lot of processed foods have it in so I have to be careful and look at ingredients on everything now. If I eat them then I get a lot of systemic inflammation very quickly. But stuff I was supposedly intolerant to, such as gluten and dairy, I have no problem with them at all and I've reintroduced without issue.
     
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  18. msf

    msf Senior Member

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    I totally understand. As I said, I was not trying to attribute blame, I was just trying to point out that, whichever ME doctor you see, there is no real safety net, because even if you have a GP who thinks you have a real illness, their stock response to any treatment whatsoever will just be that you shouldn´t undergo it. The only KDM treatment that the NHS ID doc agreed with was coincidentally the only one that I had a bad reaction to, namely probiotics. Once I had established that these were making me worse, I discontinued taking them. I am not saying I would always make the right decision under such circumstances, I´m just trying to point out that people need to be aware that there is no safety net with ME doctors, for reasons that are entirely the fault of health organizations such as the NHS.

    I think I have probably asked you this before, but have you tried the strict elimination phase version of the FODMAP diet?
     
    Last edited: Aug 22, 2017
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  19. JaimeS

    JaimeS Senior Member

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    I was only on abx for one month, so I don't really have this experience.
     
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  20. msf

    msf Senior Member

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    I thought I wrote exactly that. Did you even read my post or try to understand the point I was making? For your benefit, my point wasn´t: nothing KDM prescribes has any harmful effects. My point was: there is no safety net when it comes to seeing a ME doc, and therefore people should be aware of this fact both when they are deciding whether to see one, and when they are actually seeing one.
     

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