snowathlete
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I think we largely agree, although the threshold for what qualifies a treatment as being scientifically proven would leave some of KDM's treatments in doubt perhaps.
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Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?
- Thread starter A.B.
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I think we largely agree, although the threshold for what qualifies a treatment as being scientifically proven would leave some of KDM's treatments in doubt perhaps.
A.B.
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According to Google, samento, banderol, cumanda are uncaria tomentosa, bark from the otaba tree, and campsiandra angustifolia, respectively.
The study you cited didn't test any of these unless they're listed under different names. See table 5: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/table/T5/
The origin of this treatment seems to be the Cowden chronic lyme protocol. If de Meirleir is giving you these it's because he wants to treat your chronic lyme.
You asked me about herbal protocol for leaky gut. That's why I gave you a study about some herbs KDM prescribes for it (samento/banderol/cumanda has nothing to do with the gut)
A.B.
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I wasn't aware he prescribes herbs other than samento, banderolo and cumanda. These were the only herbs I have read about him prescribing.
No problem. It's relatively recent I think.
I think he prescribes them if patients don't want to take antibiotics or if they are struggling/not improving with abx (not exactly the same protocol as mentioned in the article but very similar)
@A.B. - KDM told me he is using the samento/banderol/cumanda protocol as they're effective anti-inflammatories (irrespective of whether Lyme was ever the precipitating factor).
Since inflammation is central to the pathophysiology of ME he's trying his best to dampen this within the gut. This however is not used as monotherapy but part of a personalised treatment plan.
Since inflammation is central to the pathophysiology of ME he's trying his best to dampen this within the gut. This however is not used as monotherapy but part of a personalised treatment plan.
ivorin
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I've been a patient of KDM's for 6 months now. First off he made the mistake of supposing I had Biotoxin Illness from mould igg's. This was later proven to be wrong through vip and msh tests. That said, he always stated that was just the first step in treating me as I had (based on his test results) a late stage inflammatory disorder (this is what he calls ME now) and neurotoxicity.
In the meantime I did a lactulose breath test that did show Sibo and a marcons test that shows a positive result. He has now given me a new treatment plan that has 2 pulses of Vancomycin and probiotics for Sibo, Gammanorm (scig), 4me (Nexavir), 5-htp, Lactoferrin, Choline, Acetyl l-Carnitine and Coq10.
He told me this is the best that can be done at the moment but that a new trial of drugs would be starting next year that may prove to be a solution (Jak inhibitors?).
I asked about Plasmapheresis (expensive) and Rituximab (risky and expensive).
He seems to boast a bit too much and doesn't tell you enough but he also seems to be trying and I have no one else to go to as I'm Croatian and don't have that much money any more.
If it was up to me, I would choose a doctor that has less patients and is more involved with them but that is not on offer.
In the meantime I did a lactulose breath test that did show Sibo and a marcons test that shows a positive result. He has now given me a new treatment plan that has 2 pulses of Vancomycin and probiotics for Sibo, Gammanorm (scig), 4me (Nexavir), 5-htp, Lactoferrin, Choline, Acetyl l-Carnitine and Coq10.
He told me this is the best that can be done at the moment but that a new trial of drugs would be starting next year that may prove to be a solution (Jak inhibitors?).
I asked about Plasmapheresis (expensive) and Rituximab (risky and expensive).
He seems to boast a bit too much and doesn't tell you enough but he also seems to be trying and I have no one else to go to as I'm Croatian and don't have that much money any more.
If it was up to me, I would choose a doctor that has less patients and is more involved with them but that is not on offer.
The point you are missing is that they are not saying they have a cure for 'CFS' or M.E, so they are not directly treating the M.E/CFS, so they cannot publish their methods of 'treating CFS' as what they are actually doing, while they wait for the science to catch up, is to test patients for possible abnormalities - POTS, autoantibodies, viral and bacterial infections and then treat those issues in order to help the patient feel a little better.
Some people are misdiagnosed, had one of these conditions as primary and recover completely. Some people have M.E AND POTS, AND Lyme, AND EBV for example and they feel a bit better after treating these, but not recovered.
Various people on this thread have been trying to explain this distinction to you, but you don't seem to be acknowledging the difference between finding a treatment for M.E and treating abnormalities found in an M.E patient.
And finally, these researchers and Drs DO publish - as you have also been shown repeatedly - KDM has published many papers.
I think you´ll find there is no standard definition for ´scientifically proven´, and that, since bodies like NICE support it, GET could be said to be scientifically proven. I would agree that the medical consensus would not back some of KDM´s treatments though, but then, that is why I went to see him. In terms of the scientific consensus, I think it depends on which scientific community you are talking about - so, IDSA researchers would agree with you, but ILADS researchers wouldn´t.
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A.B.
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I do not recognize variations of "he cannot publish his methods and results" as legitimate argument. It's always possible to publish what you're doing and how well it works. If it works well then it will help others. If it doesn't work well then we know we need to look elsewhere. There aren't any ethical arguments against publishing. It's exactly the same debate we had with the PACE data.
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A.B. let me break it down for you: if you have a reasonable objection here, it must be to the way KDM as well as other ME physicians like Kauffman test for and treat co-morbid conditions, such as Lyme Disease and dysbiosis/SIBO. If you truly object to the fact that they do test for and treat co-morbid conditions, then you are basically taking the same line as those BPSers who say that no tests should be done for other conditions in ME patients.
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KDM is not inventing a new treatment, or putting an existing treatment to a new use. He is using treatments which are already known, for patients in whom he finds problems for which those treatments are indicated. This is what doctors do. He is not a researcher - he is a clinician. He does publish research, but that's based off of his work as a clinician.
The vast majority of clinicians never publish anything. It is simply absurd to demand that KDM do so, especially when he's following various guidelines in making a diagnosis and using a treatment for it.
Data gathered in research should be public. But if you demand that every clinician conduct research, doctors won't have the time to actually treat their patients. This is nothing like the PACE situation.
snowathlete
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The issue is that some of the treatments prescribed by KDM are based on very weak evidence, sometimes a single study, or studies with methodological flaws. Most would not meet the lowest definitions that some might come up with for something being considered "scientifically proven", that's the issue.
It doesn't mean they don't work, or that they are unsafe, necessarily, it just means that they can't reasonably be described as scientifically proven, which was the point I was responding to.
The poor evidence accepted by NICE for GET is more to do with political reasons than scientific ones and poor practice elsewhere seems a rather unconvincing argument for justifying someone else's position, in my view. I doubt you're suggesting GET's evidence base is solid, are you?
No, I am not, but ME is not the only field where politics has an impact on ´scientific´ approval, hence my mention of the IDSA and ILADS. I think you are right about some of the treatments though, but that´s what happens when you try to help patients despite the fact that many of the issues that affect them have been underfunded in terms of research.
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Oral vancomycin is, to my knowledge, only indicated for the treatment of pseudomembranous colitis due to Clostridium difficile and enterocolitis due to Staphylococcus aureus.
If KDM uses this to treat other types of Clostridium, this is off-label use. In Western Europe vancomycin is considered a 'drug of last resort'. Off-label use poses a real risk.
Are his patients tested for the bacteria for which Vancomycin is indicated and officially diagnosed with these infections? Are they informed by KDM about the dangers of the development of resistant bacteria?
When Gammanorm is prescribed: Does he test patients' IgG subclasses beforehand? Are they officially diagnosed with an immunodeficiency for which the use of immunoglobulins are indicated? If not, this is off-label as well.
Based on what diagnosis, tests and scientific studies are 4ME / Nexavir, gcMAF and high dose vitamin B12 prescribed by him? I haven't seen any studies on its use in ME/CFS, Lyme, SIBO, or any other relevant co-morbid condition.
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Sorry, I don't know if he's prescribing that routinely, or at all, or what it's being prescribed for. I haven't been prescribed it.
How so? All of the side effects seem to be related to IV administration, since it doesn't get absorbed orally. Hence side effects would seem to be limited to disturbance of gut flora (which is already disturbed).
Stool tests are fairly common.
I think society has been well-informed, yes. But here in the Netherlands at least, information about side effects is the responsibility of the pharmacy, not the doctor.
No idea. I don't have access to the medical records of his other patients
Do you have a source showing IgG is only used "on-label" for a deficiency? Because there's been an awful lot of research into using it for many other immune dysfunctions.
ivorin
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I agree with all of that, but I would still rather try something than continue dying experimenting on my own with supplements and diets and useless psychiatric medicine.
Is that a compliment for KDM, definitely not, but what can you do if you live in south-east Europe.
Maybe it helps, maybe I die faster, both are better options than where I am now.
Is KDM using that fact to further his research goals? Maybe, but who cares -- not my government or medical establishment. I can't even get the Vancomycin prescribed, I need to buy it. But the psychiatric medicine that fucks my head up, that I can get in barrel-loads.
Is that a compliment for KDM, definitely not, but what can you do if you live in south-east Europe.
Maybe it helps, maybe I die faster, both are better options than where I am now.
Is KDM using that fact to further his research goals? Maybe, but who cares -- not my government or medical establishment. I can't even get the Vancomycin prescribed, I need to buy it. But the psychiatric medicine that fucks my head up, that I can get in barrel-loads.
heapsreal
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Thats not how i take what Montoya does. My understanding is that patients diagnosed with cfsme he will test them and if he finds an ongoing infection he may treat it. So if he sees cmv as an active infection he may use valcyte to treat cmv. He doesnt use valcyte to treat cfs but cfs patients with a possible active cmv infection or whatever he may find. Ive never seen Montoya even say these infections are a cause of cfs but is hopeful treating active infections in cfs patient can help them improve.
I think this is the same with KDM, he doesnt use abx for cfs but uses abx in cfs pts who may have a chronic bacterial infection.
Many drs dont directly treat cfs but treat the abnormal processes they find in cfs, thats the difference in looking at what someone may take who has cfs.
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ivorin
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And just to wrap it up, I hate KDM for being the way he is, but what am I supposed to do? What is any of us supposed to do.
You try the off-label and the dangerous and the potentially useless to find something that works. Either you do that or you wait, and I can't wait, I'm getting worse too fast.
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ivorin
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Sorry, I don't know if he's prescribing that routinely, or at all, or what it's being prescribed for. I haven't been prescribed it.
How so? All of the side effects seem to be related to IV administration, since it doesn't get absorbed orally. Hence side effects would seem to be limited to disturbance of gut flora (which is already disturbed).
Stool tests are fairly common.
I think society has been well-informed, yes. But here in the Netherlands at least, information about side effects is the responsibility of the pharmacy, not the doctor.
No idea. I don't have access to the medical records of his other patients
Do you have a source showing IgG is only used "on-label" for a deficiency? Because there's been an awful lot of research into using it for many other immune dysfunctions.
I think he gave me Vacomycin because it stays in the gut and resets your microflora to zilch -- this means I can repopulate it with a more adequate gut biota. That's where his idea ends, cause he prescribes Bio Kukt probiotics after -- inadequate in CFU's and not the right breath of strains so I ask him isn't this wrong. Will he answer? Probably will with something like "you can use different ones".
The Nexavir may or may not work, it's at least wprth a try now that it's on discount at Kalida.
The Gammanorm scares me as he doesn't explain why he gives it or how I will benefit from it.
That is what I have a problem with, a lack of understanding we deserve to know what he is trying with us and our bodies.
Fuck him and thank him is where I stand.