Meirleir treatment: avelox 400mg for overgrowth in gut

[Aubry]

Hmm... "Collectively, 62% of all Bacteroides strains were susceptible to erythromycin (MIC 1 mg/1) and 74% were susceptible to azithromycin"

Will ask for Azithromycin maybe. Although I used this AB a lot in the past.

 

[Jonathan Edwards]

Thanks I was worried because first search I found on google was: 40% resistance avelox on bacteroides. And my biggest overgrowth is bacteroides (30%). But I assume Meirleir knows what he gives.

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?

 

[msf]

I don´t think Aubry is from the UK, I think he might be from a country with a far superior health care system, albeit one that probably failed him just as much as the NHS failed me, which is why he is seeing KDM.

 

[Aubry]

It is difficult and double. I know people who got into remission with this kind of treatments (some friend of me got 6 months Vancomycin pulsed)... I try to follow this treatment cause it brought me almost in remission in 2016 (during oral Clindamycin pulsed with probiotics). And so far, there is not really one treatment for ME/CFS I think. (I'm from Belgium).

KDM first believed also in chronic lyme and other infections but last 2 years he returns back to how he treated many years ago: modulating the gut. With succes and with no succes in others unfortunatly

 

[msf]

I was guessing France (sorry about that), but I´m sure Belgium has a better health care system too.

 

[msf]

I don´t think we want to talk about what is allowed in the UK: doesn´t Wessely have a licence to practice medicine there? Who do you think has caused more harm when it comes to ME patients?

 

[A.B.]

I don´t think we want to talk about what is allowed in the UK: doesn´t Wessely have a licence to practice medicine there? Who do you think has caused more harm when it comes to ME patients?

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

 

[Aubry]

Indeed. I hope he publishes soon his results.

 

[msf]

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

So, in my experience KDM prescribes the standard antibiotic regimens for most things, with two exceptions. One is Lyme disease and the other is the gut. The same reason lies behind both, namely that patients with these problems are truly heterogeneous. So it will be very hard for anyone to show efficacy for a specific treatment (one targeting a particular microbe) in a trial. You would have to have a massive patient population to be able to find enough patients with the same microbiota profile/combination of co-infections.

 

[Thinktank]

Since KDM believes (I believe) that the gut is the main driver of ME symptoms, it is not a minor problem. The relative risks of fluoroquinolones are hard to quantify, however, and it really is up to you whether you want to take it or not.

Not really, the risk of fluoroquinolone toxicity is very real. The FDA even assigned black box warnings to several fluoroquinolone antibiotics. Patients should be educated about the potential risks from using this life threatening drug.

I share your belief about ME being driven by gut problems, but it's still a hypothesis. And because of that, such drugs should not be prescribed. I'm also against the use of vancomycin, it should be used as a drug of last resort.
There are other antibiotics that can be used which have similar properties with less harmful side effects.

 

[msf]

I put relative there on purpose: relative to the risks of doing nothing. I am talking about quantifying risk. I am not advocating using any particular treatment in any particular case, I think that should be up to the patient to decide (since I do not trust organisations like the NHS to decide it for me).

 

[A.B.]

So, in my experience KDM prescribes the standard antibiotic regimens for most things, with two exceptions. One is Lyme disease and the other is the gut. The same reason lies behind both, namely that patients with these problems are truly heterogeneous. So it will be very hard for anyone to show efficacy for a specific treatment (one targeting a particular microbe) in a trial. You would have to have a massive patient population to be able to find enough patients with the same microbiota profile/combination of co-infections.

If it's very hard to demonstrate effectiveness, why does de Meirleir prescribe antibiotics? How does he know they are effective? If he has data showing effectiveness, it should be published. If he has no data showing effectiveness then why does he consistently prescribe antibiotics in particular?

 

[msf]

I thought you might ask that. He is prescribing them off-label, so the usual logic applies. Is there something in their on-label use that suggests that it might be effective in an off-label use? So in the case of a certain bacteria in the gut, is the antibiotic in question effective against that bacteria in invasive infections? And so forth.

 

[msf]

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.

 

[A.B.]

I thought you might ask that. He is prescribing them off-label, so the usual logic applies. Is there something in their on-label use that suggests that it might be effective in an off-label use? So in the case of a certain bacteria in the gut, is the antibiotic in question effective against that bacteria in invasive infections? And so forth.

If he has evidence that infections are playing an important role in most ME/CFS patients (he is prescribing antibiotics to most of his patients) why isn't he publishing it? If he has no evidence, why is prescribing antibiotics?

 

[msf]

Hey, you´re just throwing questions at me, this thread was about the use of a particular antibiotic in a particular context. If you want to revisit that debate, just google it, there are tons of them on PR. I am a patient of KDM; I do not work for him.

 

[erin]

I have ME since 12 years, though diagnosed in 2008.

I was on Avelox 400 mg for pneumonia in last April, I had to complete my course and it was not effective enough. I had to take a second course of this horrid medicine. While I was on it, I had very strong suicidal thoughts first time in my life. I still have the depression on/off since then, which was not an issue for me before. What is worse is that I now have gastritis (had to have an endoscopy) and I am unable to get better. It is a very common side effect of Avelox apparently. Nausea is continuing since the day 1 of Avelox use, I am on several stomach medication, I can not eat very well. I have lost 8KGs total since May. I feel very weak.

Just writing my experience.

 

[perrier]

As stated before, avelox is a fluoroquinolone antibiotic. That's one thing i will never ever touch again in my life.
I made the unfortunate mistake to take ciprofloxacin for inflammatory bowel disease and that's when my ME really blew up. I was later diagnosed with fluoroquinolone toxicity syndrome, the damage has so far been irrepairable.
It's a minor percentage of users that will contract the syndrome but lives have been completely destroyed because of this antibiotic class, so in my opinion it should only be prescribed for life-threatening conditions.
Treating gut dysbiosis with such an antibiotic is not worth the risk.

Thanks for your candid post. This is a nightmare drug.

 

[A.B.]

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

 

[barbc56]

If it's very hard to demonstrate effectiveness, why does de Meirleir prescribe antibiotics? How does he know they are effective? If he has data showing effectiveness, it should be published. If he has no data showing effectiveness then why does he consistently prescribe antibiotics in particular?

While I suspect he believes in what he does, he ignores much of the scientific evidence when it comes to treatments.

Frankly, I find that combination frightening. At least a real quack knows his/her treatments are fake.