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Meirleir treatment: avelox 400mg for overgrowth in gut

msf

Senior Member
Messages
3,650
I don't think Prof Edwards has any right to say KDM wouldn't be able to practice in the UK when patients are currently being neglected and abused by the so called BPS doctors!!

It makes me so angry. KDM is intelligent and measured like you said. How can he publish his work when his treatments are so patient-specific. He's no different to the other top ME clinicians like Dan Peterson, Montoya, Klimas etc. Just his focus is more on the gut. I don't see patients being rude about these docs?!

Also why are people so anti antibiotics?! Do they not appreciate that all drugs carry some risk - rituximab, ivig, antivirals etc. It's a benefit vs risk decision and there's no way you can fully protect patients against adverse effects. But denying therapy is also dangerous!!´
 
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A.B.

Senior Member
Messages
3,780
Also why are people so anti antibiotics?! Do they not appreciate that all drugs carry some risk - rituximab, ivig, antivirals etc. It's a benefit vs risk decision and there's no way you can fully protect patients against adverse effects. But denying therapy is also dangerous!!´

The benefit may be zero. The risk isn't fully explained to the patient. The justification for antibiotics are lab tests which may be mostly false positives. The doctor doesn't acknowledge harm he has inflicted on patients and doesn't publish his data. This is all happening under the radar. Patients deserve better than this.
 

msf

Senior Member
Messages
3,650
Paragraph 3 refers to paragraph 2: how is this different to what Peterson, Montoya and Klimas do?
 

dadouv47

Senior Member
Messages
745
Location
Belgium
It's weird. Two days ago I was on a Lyme forum and people were angry that KDM only treats co-infections with abx when he gets a positive result (which is not the case most of the time since bartonella has a 80% false negative rate and so does many others co infections). And today I'm reading that he's abusing with abx, prescribing them without any data. Everything and its opposite...

It's seems to me that he prescribes some very standard abx for leaky gut/SIBO or for Lyme. Nothing different from what others ILADS doctors do. He's even more cautious than most of them.

In my case I'm under treatment with him for 15 months and he doesn't want to treat me ''aggressively'' and he has been in my opinion a little bit overcautious by not changing my treatment plan, probably because my blood and stool tests were improving (and I was getting some small improvements as well).

I'm pretty aware that KDM is far from perfect and can make tons of mistakes. I'm not a ''successful'' story, but I don't understand all the drama about his approach since most of what he prescribes are clearly based on clinical trials, at least for intestinal dysbiosis and Lyme disease. You can disagree on his main approach and make the case that you can't treat M.E with abx for the gut and supplements, but that's doesn't mean that he's prescribing medications that don't have any scientific evidence about what he's trying to fix.
 

Aubry

Senior Member
Messages
189
Doing nothing is no option for me. I come from being totally bed bound to being homebound with antibiotics (KDM treatment). Some people have not so big symptoms and say: well yeah, if I do nothing it's better for me... Well, be glad that NO treatment doesn't make you worse I would say. This is definitely not the case in my situation.
 

erin

Senior Member
Messages
885
Doing nothing is no option for me. I come from being totally bed bound to being homebound with antibiotics (KDM treatment). Some people have not so big symptoms and say: well yeah, if I do nothing it's better for me... Well, be glad that NO treatment doesn't make you worse I would say. This is definitely not the case in my situation.

Have you benefited from Avelox?

I am very interested in this.

This medication made me so sick, I'm sicker than before. It was not KDM who gave me Avelox. To me this thread is not about the Dr's, about the specific medication.
 

msf

Senior Member
Messages
3,650
Have you benefited from Avelox?

I am very interested in this.

This medication made me so sick, I'm sicker than before. It was not KDM who gave me Avelox. To me this thread is not about the Dr's, about the specific medication.

Since you are interested in discussing the actual topic of this thread, I will say that I was prescribed Cipro after being mildly ill for two days (not by KDM), and I have good reason to believe that if I had taken it I wouldn´t have developed ME (since my ME was triggered by Yersinia Enterocolitica). But I also understand that it can cause syndromes that may be comparable in severity to ME in others, so I think it is a difficult issue that in my opinion needs to be solved by quantifying the risks.
 
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Gingergrrl

Senior Member
Messages
16,171
My issue is with Avelox and fluoroquinolones and preventing another living soul from going through what I did with Levaquin. I felt you were being very hard on Mij and speaking to her rudely. That is just my opinion and it has absolutely nothing to do with KDM.
 
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Gingergrrl

Senior Member
Messages
16,171
I agree and Avelox and FQ antibiotics are so incredibly dangerous but the opportunity to share that is gone for this thread. Even if my own doctor tried to prescribe it to me (which he wouldn't b/c he knows my history with Levaquin), I would 100% say no and ask for an alternative. Taking Levaquin is truly one of the biggest regrets of my life and if I could go back in time, I would not have taken it, and might not be sick today. It altered the entire course of my life and this is why I feel so passionately about it.
 

Aubry

Senior Member
Messages
189
In my previous consultation with KDM he showed pictures of our gut sections. Totally inflamed dentric cells. It looked like grapes lol. In crohn or ulceritis inflammation is only at the outside. In ME/CFS (lyme) the whole section of the gut is inflamed which gives chronic inflammation etc... One of the new medecins (Jak Stat inhibitor) could address this problem.

BUT I also heard from a friend patient he would present something big today in USA to a panel of scientists. But about that he couldnt tell us anything... mystery as always I guess
 
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JadeD

Senior Member
Messages
165
Location
UK
@Aubry - this is exciting. I wonder if it's to do with all of the gut immune work him and his team are doing at the Nevada Center for Biomedical Research Unit (Lombardi et al).

Even if they don't find the complete cause for ME, I'm confident they will add something very positive to the current evidence base, as they have done in many of their previous publications. Respect to him for that.
 

Aubry

Senior Member
Messages
189
Indeed. Let's hope :) We all know KDM did promise a lot during his career.
But this time I feel it could be spot on. He also said: In 2019 I will be able to go on pension, then you won't need me anymore. He is very thriven cause he has family members who are ill.
 

Daffodil

Senior Member
Messages
5,875
@Aubry the dendritic cells are like grapes? oh man..that sounds awful. ugh.

in may he told me there was a paper being reviewed by a journal and that it would be published soon but another team member told me he is not aware of any upcoming papers...so I don't know what's going on
 

erin

Senior Member
Messages
885
Since you are interested in discussing the actual topic of this thread, I will say that I was prescribed Cipro after being mildly ill for two days (not by KDM), and I have good reason to believe that if I had taken it I wouldn´t have developed ME (since my ME was triggered by Yersinia Enterocolitica). But I also understand that it can cause syndromes that may be comparable in severity to ME in others, so I think it is a difficult issue that in my opinion needs to be solved by quantifying the risks.


I have never been to KDM, not have any information about his treatment regimes. I came across few very interesting explanations of his about endocrines and ME in youtube. That's what I know about him over all.

I don't know what cipro is. I was given avelox very recently though I have ME since 12 years. I did not have the ME because of Avelox. That's why I found the subject interesting.
 

TenuousGrip

Senior Member
Messages
297
Edit: As a result of all the damage caused to me by Levaquin, I was diagnosed with FTS (Fluoroquinolone Toxicity Syndrome)

I'm hoping this doesn't stray further off topic, but ....

What's your gut tell you about the long-term impact of that severe adverse drug reaction on you ??

In December 2013, I suffered a near fatal drug reaction (DRESS Syndrome). Since that time, my health has slowly gone downhill. I'm now in presumptive heart failure along with the ME/CFS.

My scant research tells me that these serious ADRs (Adverse Drug Reactions) can really do serious harm -- some immediate, some much longer term. It's often triggered by a 'cytokine storm' set off by the drug reaction.

I saw the autoantibodies you were found to have. Much of this ... and late-onset autoimmune issues ... are known to be sequelae to severe ADRs.

My gut tells me that none of this is coincidence in my case (and I'm trying to get the IVIG that you got (huge congratulations to you, by the way)).

Did your health take a serious and unrecoverable turn for the worse after your ADR ??
 

Marc_NL

Senior Member
Messages
471
BUT I also heard from a friend patient he would present something big today in USA to a panel of scientists.
I've also read about this, it's supposed to have happened yesterday (Monday).
Can't wait to hear about what was presented ...
 

Gingergrrl

Senior Member
Messages
16,171
I'm hoping this doesn't stray further off topic, but ....

I think it is on the topic b/c the original poster was asking about Avelox (FQ antibiotic).

What's your gut tell you about the long-term impact of that severe adverse drug reaction on you ??

It destroyed my health and life as I knew it was over. I was in excellent health (other than the throat infection) prior to taking Levaquin. At that time, I was at the gym 5x/week (three of those working with a personal trainer) and was working full-time in my career and doing volunteer work. The reaction occurred on the final day of taking Levaquin (500 mg pills, 1x/day for seven days). It was not an allergic reaction vs. a neurotoxic reaction. Had I been allergic to the first pill, it would have actually been a blessing, because I would not have ended up taking all seven pills. After Levaquin, it took me six months of physical therapy just to be able to write with a pen again. It started my descent into medical hell.

In December 2013, I suffered a near fatal drug reaction (DRESS Syndrome). Since that time, my health has slowly gone downhill. I'm now in presumptive heart failure along with the ME/CFS.

Which medication was it from (if you are comfortable saying)? I Googled "DRESS Syndrome" after reading your post and it is not what happened to me b/c it sounds like an allergic skin reaction (unless I am totally misunderstanding). My reaction was not allergic and did not involve my skin. Five years after the Levaquin reaction, I developed MCAS and had near death allergic reactions in 2015 but they were totally different than what happened with the Levaquin. I have no idea if the MCAS was in any way related to it.

Why do you think you are in presumptive heart failure now? Did this show up on an Echo or other test? I am so sorry to hear this and am hoping it will turn out not to be the case.

My scant research tells me that these serious ADRs (Adverse Drug Reactions) can really do serious harm -- some immediate, some much longer term. It's often triggered by a 'cytokine storm' set off by the drug reaction.

My reaction was considered an "ADR" and I filed an FDA Med Watch report not that anyone at the FDA ever contacted me or gave a shit if I had died. Levaquin is given out like candy and is one of the biggest money makers on the market to this day. I had both immediate and long-term damage from it like you said.

I saw the autoantibodies you were found to have. Much of this ... and late-onset autoimmune issues ... are known to be sequelae to severe ADRs.

I had no idea that auto-antibodies were known sequelae to severe ADR's! I assumed in my case that the autoantibodies were post-viral. I was very unlucky to have several triggers and hits to my immune system in a short time span starting with the Levaquin reaction in 2010, followed by severe mono from EBV in 2012 (post surgery), followed by a second viral infection in Jan 2013 at the exact same time that we moved into a rental with toxic mold. So at this point, it is literally impossible to figure out what caused what? Even if I could assign percentages to what is from Levaquin, what is from EBV & viral infections, what is from toxic mold exposure, etc, I am not even sure it would matter at this point. All I know is that I have all of these auto-antibodies and I want them gone.

My gut tells me that none of this is coincidence in my case (and I'm trying to get the IVIG that you got (huge congratulations to you, by the way).

I don't think it is coincidence either and I hope you will be able to get the IVIG. Which autoantibodies do you have? Does your doctor support you getting IVIG? Once I realized that high dose IVIG was my best chance, and that if I was a responder, that Rituximab was the next step, I was hell-bent on making this happen. I had reached the point of knowing it could kill me, but it could also bring remission, and nothing was going to stop me or get in my way.

Did your health take a serious and unrecoverable turn for the worse after your ADR ??

Yes, 100% and I was not sick prior to taking Levaquin. But I recovered after 1.5 yrs only to get severe mono/EBV at age 41. And then the second virus/mold exposure sealed my fate and once I developed severe POTS, it just kept getting worse and worse. But I am still alive so there is hope.

So my message is that unless you are dying of sepsis, or there is literally no alternative to an FQ antibiotic, do not take one. It is not worth it.
 

Undisclosed

Senior Member
Messages
10,157
This thread was supposed to be about an antibiotic that KDM prescribed. Unfortunately, the thread veered off into conversations about the antibiotic and KDM. It's impossible to split the thread as many posts involve both discussions. We have removed any off-topic posts and some rule breaches.

This thread was never meant to be about KDM and we can understand why some members got very upset and annoyed when it did.

Please restrict any further posts to be about the subject of the first post -- avelox 400mg for overgrowth in gut

Thank you.
 
Messages
73
Location
Belgium
Fluoroquinolones are essentially chemotherapy drugs (topoisomerase inhibitors). It is insane to prescribe these for non life threatening infections.

In Belgium doctors prescribe them like candy. GPs are "advised" by pharma reps to give avelox as a first line treatment for pneumonia. Many do so.
Ciproxine and tavanic are very easily prescribed for cystitis/ pyelonefritis, also by specialists.