Meirleir treatment: avelox 400mg for overgrowth in gut

[msf]

Fluoroquinolones are essentially chemotherapy drugs (topoisomerase inhibitors). It is insane to prescribe these for non life threatening infections.

Since it´s on-label uses include non-life threatening infections, it seems your truck is not just with KDM, but the FDA and countless other health organizations:

https://aidsinfo.nih.gov/drugs/458/ciprofloxacin/0/patient

 

[msf]

Anyway, since those critical of KDM have not responded to any of my points, and since I already know that antibiotics are bad, mkaay, I can only imagine that you are addressing other patients of KDM and not me. So please carry on whilst I enjoy the improvements that I have seen under KDM´s treatment (going from largely housebound to enrolling to study a master´s full-time this year).

 

[hinterland]

I recently went to Kdm and I got new treatment. I have overgrowth of streptococcus and bacteroides mainly. Plus general bad gut (almost no firmicutes etc)

He proposed: Avelox 400mg, 1/day for 30 days. Hereafter: Biokult probiotic for 30 days.

I looked it a bit up and see there is 40% resistance to avelox from bacteroides I assume KDM knows this? I am worried cause it is a though antibiotic to take. I took ciprofloxacin before (same family) with no issues exept black tongue at the end of the course...

I'm another one screwed up by fluoroquinolone antibiotics. I'll never take them again for any reason. Very dangerous drugs, the full extent of the side effects didn't become apparent until several weeks after stopping taking them. Ten years later I still experience symptoms.

 

[Vojta]

This is just my interpretation of how he operates. I think some others (not generally his patients) think he just draws the name of an treatment from a hat. If you have met him though, or even just heard him speak, it is easy to see that he goes about things in a very logical, measured way.

I was his patient for 6+ years. He ruined my life and the rest of my health. In those 20+ visits he never said anything "very logical" to me. He drawed conclusions from absurdly vague symptoms or ignores parts that doesn't fit his current "discovery". He actually told me once that all my negative Western Blots means that I have "chronic lyme" because I wouldn't be so sick if I had them positive. Crazy. I know that now but it's too late for me.

@Aubry I didn't have any major side effects from ciprofloxacin before too but Avelox caused me peripheral neuropathy starting on day 5. By day 10 I had such tremor I problems with movement and coordination + other symptoms I had to stop. Back than most of that was reversible over next few months but I was unfortunately damaged later by other of his antibiotics. (so it could make some change which would made me suspectible to consequent damage of other toxins).

Funny thing is that he himself told me after that Avelox can't be taken for long because it could do this damage!!!

 

[msf]

I did say not generally his patients. It´s awful that you are much worse than before, but I don´t think there is a doctor who actually prescribes treatments who hasn´t made a patient worse.

 

[Vojta]

I did say not generally his patients. It´s awful that you are much worse than before, but I don´t think there is a doctor who actually prescribes treatments who hasn´t made a patient worse.

He had plenty of opportunities to stop damaging and useless treatments when I reported progressing side effects, neurotoxicity and new symptoms over the years and reasses my case. He always dissmised anything I tried to say by "it's a herx" (despite not having any of the classic symptoms listed for Herx reaction!). And I'm not the only one who ended up like this. It's not one time mistake. It's long-term malpractice and I hope they close him down because he's just really lousy and dangerous clinican blindfolded by his unpublished "discoveries" who builds his "scientific aura" only with help of unproven claims how many people he cured.

 

[msf]

I disagree, and so do many of his other patients. If you look at the only figures published about any ME physician, KDM´s success rate (as reported by his patients) was 75% better, 10% worse.

 

[Valentijn]

If de Meirleir thinks he can help patients with antibiotics he should publish the data that shows this.

He doesn't prescribe antibiotics for ME. He prescribes antibiotics for infections and dysbiosis detected via lab tests. These are mainstream uses of antibiotics, nothing experimental or unusual. And certainly not quackish.

The validity of the lab tests may be open for discussion, but that is always the case with Lyme, and not under KDM's control. The mainstream tests simply have a very high false negative rate, which is why even the most conservative doctors who see Lyme patients (versus people spouting off online) acknowledge that diagnosis is largely clinical, relying on exposure, symptoms, and supporting lab tests which indicate a strong likelihood of Lyme.

I don't agree with 100% of KDM's statements or proposed treatments (or those of any other ME/CFS clinician or researcher, for that matter), but his use of antibiotics is quite scrupulous. I also would not take a fluroquinolone, since one may have triggered a pre-ME episode for me, and they impact mitochondria, which I tend to react pretty badly to with other drugs. But instead of concluding that KDM and hundreds of thousands of other doctors who have prescribed the same drugs shouldn't be licensed, I'd email the clinic to let them know why I don't want to take it and to ask for an alternative that can achieve the same result.

 

[A.B.]

He doesn't prescribe antibiotics for ME. He prescribes antibiotics for infections and dysbiosis detected via lab tests.

That doesn't change a thing. He should publish all this data.

 

[Vojta]

I disagree, and so do many of his other patients. If you look at the only figures published about any ME physician, KDM´s success rate (as reported by his patients) was 75% better, 10% worse.

Is there any peer-reviewed published study supporting this made up statistic? I don't think so. If you want to continue spreading propaganda like this keep going I'm too sick to fight it as many others and you have bigger motivation defending your "saviour" and your investment.

He doesn't prescribe antibiotics for ME. He prescribes antibiotics for infections and dysbiosis detected via lab tests. These are mainstream uses of antibiotics, nothing experimental or unusual. And certainly not quackish.

I will say it again then. He also prescribes long-term antibiotics to people without any scientific evidence of infection or without any empirical evidence of improvement of particular patient. And you will certainly reply ... but, but, it's clinical diagnosis. Yeah, sure...

 

[Valentijn]

I will say it again then. He also prescribes long-term antibiotics to people without any scientific evidence of infection or without any empirical evidence of improvement of particular patient. And you will certainly reply ... but, but, it's clinical diagnosis. Yeah, sure...

I haven't heard of him doing this. Even if a Lyme test with low sensitivity is negative, there are other lab tests which can support the possibility of Lyme, or at least indicate a bacterial infection. Combined with symptoms and possible or definite exposure, a clinical diagnosis is reasonable. If clinical diagnoses were not allowed, half of patients with Lyme would simply never be treated.

Perhaps it's not a certainty that a Lyme diagnosis is correct, even when made scrupulously on a clinical basis. But it's up to the patient and the doctor to decide together if they're willing to accept the risks of treatment.

 

[Valentijn]

That doesn't change a thing. He should publish all this data.

Why? Or do you believe that every doctor should publish about every group of patients they see? Antibiotics for Lyme is not controversial. No doctor is under an obligation to prove that antibiotics work for Lyme. And clinicians literally have to choose between spending time treating patients or publishing. If they are going to publish, I'd prefer it be about ME/CFS, not about the use of antibiotics in treating detected bacterial infections.

 

[A.B.]

Why? Or do you believe that every doctor should publish about every group of patients they see? Antibiotics for Lyme is not controversial. No doctor is under an obligation to prove that antibiotics work for Lyme. And clinicians literally have to choose between spending time treating patients or publishing. If they are going to publish, I'd prefer it be about ME/CFS, not about the use of antibiotics in treating detected bacterial infections.

He is supposedly finding a lot of infections (multiple per patient from what I've heard) whereas other doctors aren't finding any. Why the huge discrepancy? He should publish so that we can find out. The answer is likely that de Meirleir is treating false positives (and hurting some people in the process).

 

[Mij]

Perhaps it's not a certainty that a Lyme diagnosis is correct, even when made scrupulously on a clinical basis. But it's up to the patient and the doctor to decide together if they're willing to accept the risks of treatment.

I personally don't have experience with treating Lyme or taking abxs, but I did have a very dear friend (who passed away from M.E complications) who was very desperate to get well again and had several doctors who would openly rx them to him. All the abxs he took, including the one we are discussing totally screwed him up.

I have a real issue with the patient 'deciding' with the doctor whether they should 'accept' treatment when the patient is desperate and not as experienced and educated as the doctor on the risks.

 

[Vojta]

I haven't heard of him doing this. Even if a Lyme test with low sensitivity is negative, there are other lab tests which can support the possibility of Lyme, or at least indicate a bacterial infection. Combined with symptoms and possible or definite exposure, a clinical diagnosis is reasonable. If clinical diagnoses were not allowed, half of patients with Lyme would simply never be treated.

Perhaps it's not a certainty that a Lyme diagnosis is correct, even when made scrupulously on a clinical basis. But it's up to the patient and the doctor to decide together if they're willing to accept the risks of treatment.

Yeah, he did it to me and I know at least several other people who were negative for everything or only viral and should got ME/CFS diagnosis but got "chronic lyme". Of course none of them improved on long term antibiotics, most of them are worse... But he still had courage to proclaim "ME/CFS = "chronic lyme""!
Also is there really evidence that that half of lyme patients (how do we know this again?) with "clinical" diagnosis are getting any better with long term antibiotics? Again I don't think so. They could have ME/CFS and they wouldn't be able to prove it one way or other.

Also I wasn't aware or were informed about any risks of any treatment by KDM ever! He checked my liver tests like twice in 6 years when I was under his "treatments". And later after I was more sick I wasn't able to research anything at all so I couldn't make any reasonable conclusions myself. If I knew back then that neurological/mito toxicity I was getting were side effects and not "herx" and that some long term atbx can damage permanently mitochondria, I would have never agreed and I wouldn't suffer in agony everyday unable to do anything.

 

[Aubry]

Thanks for your warnings. I have taken the antibiotic 5 days and will stop it. I have to many side effects (or die off reactions) and I don't want to risk anything more. The SIBO herbal protocol I had to gradually build up and now I can handle it good so I will continue the SIBO and Dysbiocide herbal protocol for my gut.

 

[msf]

Is there any peer-reviewed published study supporting this made up statistic? I don't think so. If you want to continue spreading propaganda like this keep going I'm too sick to fight it as many others and you have bigger motivation defending your "saviour" and your investment.



I will say it again then. He also prescribes long-term antibiotics to people without any scientific evidence of infection or without any empirical evidence of improvement of particular patient. And you will certainly reply ... but, but, it's clinical diagnosis. Yeah, sure...

I appreciate that you feel strongly about this issue, but please try to remain courteous on this forum - I have been temporarily banned before for not remaining so, and when that happens it puts a real dent in the discussion. Perhaps you could have asked me where I got that statistic from. I got it from a Norwegian ME association report about ME patients (look it up, its on the forum somewhere). As I suggested, they just asked some patients what treatments they had undergone, and asked them what the result of that was. KDM´s figures were the exact opposite of the Lightning Process´s. Again, as I suggested in my post, there aren´t any peer-reviewed published studies of ANY ME PHYSICIAN (I am trying to remain courteous whilst adjusting for the hard-of-hearing), so presumably you have a problem with all of them. I guess you didn´t for the 6 years you were a patient of KDM though.

I have one question for you too: did you suddenly get worse at the end of those 6 years? I can´t imagine being so desperate that I would continue seeing a doctor whilst steadily getting worse for 6 years, although I am not saying that that is impossible. Personally, I would not have stuck with the treatment if it had made me significantly worse for more than say, 6 months. I appreciate that other people might see it differently, so I am just curious as to how this worked in your case.

By the way, I don´t need to justify my ´investment´ in KDM´s treatment. The Masters programme I am starting this year does that for me. As does the great holiday I took in Crete this year. As does the HSK level 5 test I passed this summer. As does the couple of weeks I worked full-time after my last round of treatment (the contract was for just two weeks), when I went to the pub almost every day with the students. Now, I wouldn´t dream of pretending that every patient of KDM will see the same results as me. So I do not understand why you insist on the equivalent.

 

[msf]

I personally don't have experience with treating Lyme or taking abxs, but I did have a very dear friend (who passed away from M.E complications) who was very desperate to get well again and had several doctors who would openly rx them to him. All the abxs he took, including the one we are discussing totally screwed him up.

I have a real issue with the patient 'deciding' with the doctor whether they should 'accept' treatment when the patient is desperate and not as experienced and educated as the doctor on the risks.

So, are you happy just waiting for the NHS to get its act together then? Unfortunately for my father, he died whilst waiting for that to happen, just 35 years after getting ME.

 

[Mij]

So, are you happy just waiting for the NHS to get its act together then? Unfortunately for my father, he died whilst waiting for that to happen, only 35 years after getting ME.

I'm sorry about your father.

Happy? I'm not damaging myself with shot in the dark treatments.

I've already made myself worse off by taking immune modulators when I was feeling 80% improved by doing absolutely ZERO treatments.

 

[keenly]

Dear Aubry,
I think you can be pretty sure that Dr De Meirleir has no reliable evidence for treatments like this. That is why only he is handing them out. Antibiotics of this sort can cause significant long term harm. In the UK I very much doubt Dr De Meirleir would be allowed to practice the way he does. As a physician I cannot see the sense or ethics behind this sort of treatment. Are you sure you want to follow his advice?

The NHS is not very good at all when it comes to helping those with long term health issues.