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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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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)
Hey Jamie, I'm glad you had success with ABX treatment and the gut.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.
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
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.
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.
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.
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.
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?
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.
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.
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
@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.