Discussion in 'ME/CFS Doctors' started by SamB, Mar 27, 2017.
@Folk i think the amount of improvement depends also on how long you have been sick.
Any news or publications from KDM?
Funny, he told me the exact same thing back in January 2013 in my first appointment. Good if there is more research due but I won't be getting my hopes up until I see it.
Like I said before, there are ultimate and proximate causes, so I think patients´ reports of what KDM has said need to be taken with a pinch of salt, especially as I have noticed that he tends (as all doctors do) to simplify things for patients. I would say that he found a cause of most of the symptoms of ME back around 2011 when he reported extremely high levels of LPS in severe patients, but then, what causes the high levels of LPS? And how exactly do the high levels of LPS cause this set of symptoms? If he has made some progress in one of these areas then it will be a great advance in our understanding of ME.
PGE2 is a big problem for me. When I had it tested several times it was very high and when I subsequently got ulcerative colitis and started taking mesalazine my ME improved a bit with the inflammation feeling going down, but sky rockets if I forget a dose. I believe mesalazine is working to keep a lid on PGE2.
So I do believe there is something going on with PGE2 in ME that is key, at least for some people.
My ME gets worse when i have angioedema.
Ketofien stabilises so mast cells implicated.
Possible LPS leakage for sure.
I see no correlation in LPS and sort of symptoms in many people who are going to KDM. Same for other blood tests. Its sort of ironic that 2 people with approx same blood results are totally different: one can work and have pretty normal life while other is bed bound...
Do you mean sCD14 doesn´t track symptoms? KDM doesn´t test directly for LPS.
Indeed sCD14, shows not much for me (symptom wise)
Hi Aubry -
Do you have high sCD14 levels?
first 3200 nowadays within reference range of redlabs 2700 (0 - 2800)
I think these KDM statements need to be seriously examined. I have not had a doctor telling me a big announcement is upcoming in the next months, and then later coming up with nothing. If he is misleading his patients, then it should be brought to public here, as many people get a lot of false hope from these kind of statements. I was under the true impression that he was about to announce something, but if what @snowathlete told is true that he has been doing the same since 2013, there is little reason to expect any real announcement would come out.
There are now three independent posters (this, this and this) claiming he told similar things, so it can't be a coincidence. The whole reason this thread exists is because KDM made a statement, so at the very least the PR community should in future not be wasting their time speculating every time he tells a new patient something similar.
I saw him in 2011....he was talking about a big revelation/announcement back then. Never came ...
A poster on here called Athene said he told her he had discovered some Scandinavian Snp that would explain why Scandinavians were so badly affected.
I remember her saying nothing came of that.
So it seems like he has a habit of touting big announcements that never materialize
Hi everyone, this is my first post on here although I have been following Phoenix Rising since I got sick just over one year ago. I have been under KDM's treatment now for 4 months - it has been very expensive however I can say it has been money well spent as I now know what is going on in my body. I am also starting to slowly improve.
My official diagnosis is Lyme disease (as confirmed by high scores on the Arminlabs Elispot), however Borellia is now likely inactive and is not the ongoing cause of my symptoms.
Sorry for the long post however here is the situation as I understand it:
According to KDM, the core of the problem in the vast majority of his patients lies in the intestines. ME/CFS is a gut disease which is initiated by a severe infection (often Lyme, but not always. Yersinia is another common one) that causes a sequential chain of events to happen in the intestines that results in a self perpetuating illness.
During my first follow up appointment in April he showed me pictures of the cross section of the guts of ME sufferers - it was filled with purple blobs that looked like raisins/grapes. These are inflammatory cells/dentritic cells which have migrated to the gut from the rest of the body during the initial infection (in my case borellia invaded the intestinal lining).
These cells cause major inflammation and an increase in intestinal permeability and this is the reason why most ME sufferers have pain in the abdomen when pressed in a certain area. Normal healthy people do not have this pain.
Once this mechanism has occurred we enter a vicious cycle - the dendritic cells in the swollen gut affect immune system homeostasis and we quickly develop dysbiosis and SIBO. LPS from the overgrowth of gram negative bacteria in the small intestines perpetuate the inflammation and the dentritic cells continue to be activated, causing further immune dysfunction.
SIBO/increased leaky gut/translocated LPS as the consequence of the immune dysregulation is the first domino to fall, setting off our cascade of symptoms. LPS is highly toxic to the body and when translocated causes a huge amount of systemic inflammation. Specifically:
High sCD14 - the body's IGA response to LPS
High PGE2 (which then causes a Th2 shift - which is responsible for the reactivation of EBV, poor viral defence, high nagalase) etc)
A significant increase in nitric oxide (part of the body's immune response to a bacterial infection). This results in a major upregulation of the NO/OONO cycle which causes mitochondrial problems/fatigue.
A big increase in body toxicity resulting in low glutathione/methylation problems etc compounding mitochondrial problems.
A major amount of neuroinflammation. LPS causes an increase in IDO which results in the massive increase of the breakdown on tryptophan in the brain into quinolinic acid (often leaving sufferers depressed). The inflammation messes up the signalling of the HPA axis, so ACTH is not produced in large enough amounts. The adrenal glands then do not get the signal to produce cortisol. This causes more fatigue, orthostatic hypotension etc.
High ammonia is also a result of the SIBO. Ammonia contributes to most of the above problems.
In response to the comment above regarding the correlation of LPS/sCD14 to the severity of symptoms – my own take on this is that the body has been damaged over a period of time and whilst removing the LPS will ultimately help, it will take a while to start to see an improvement in symptoms as all the systemic consequences described above still need to correct themselves even after the source of the problem has been reduced. Michael Maes’ famous study in 2008 corroborates this.
The goal of KDM’s treatment is to attempt to break the cycle which is happening in the intestines by correcting the dysbiosis using pulsed antibiotics/probiotics. In continually removing the source of the inflammation (the excess LPS caused by the SIBO), the immune system over time will allowed a chance to normalise and eventually be able to take care of the problem itself.
This is easier said than done however as the SIBO comes back very quickly after the course of antibiotics, especially in sufferers who have been sick for a long time as the biofilms are better established/there is usually greater degree of inflammation & tight junction breakdown.
There is hope for us all in the future however as a new breed of genetic medicines are due to hit the market in 2019 for Rheumatoid Arthritis/Crohns, if given regulatory approval. They inhibit the JAK enzyme which is responsible for inducing inflammation in the body/gut. The hope is in that inhibiting the JAK 1 /STAT 3 pathway that the dendritic cells in the gut will be extinguished and intestinal immunity will be given chance to normalise. This will attenuate the translocation of LPS, the immune system will shift back to TH1 and systemic inflammation will eventually die down allowing healing/recovery to occur.
I think people should take second hand news with a pinch of salt..
I have read statements from KDM on this forum and on facebook that where exactly the opposite as what he told me. So did he say two different things or did one of us just not understand what he meant? Or maybe he changed his opinion a few years later?
I worked in medicine and I once got a course on communication, it turned out patients just understood about 25% of what you said.. that combined with the fact that KDM tries to explain things extremely simple, has very limited time per patient and is not the most talented social person I have ever met I will just wait for news until I have it on paper.
If have found articles from KDM from 2012 or 2013 about differences in SNP's and microbiome between norwegian and belgian patients and controls.
hmmm How KDM explains with high LTT than Lyme is not active anymore? This is a bit weird for me. Is this test then unreliable? Will you get IV persister protocol for Lyme OR gut antibiotics etc...
My scores were +5 +4 0 on the LTT.
I'm not entirely sure how he came to the conclusion the Lyme is inactive either - perhaps it is a case of simplification, ie that Lyme is not causing me problems any more, it is the damage left behind (leaky gut). The only cytokine that was out of range was IL-8.
I think he is right anyway, since March I have been on the full buhner protocol on high doses and I do not have any issues tolerating the herbs any more, no more herx reactions etc. This was not the case when I first started the herbs.
My treatment is gut antibiotics to treat the dysbiosis, first vancomycin and now rifaximin along with weekly gammanorm, mesalazine, plus zeolite, lactoferrin, b12 injections. I also do buhner, which I added myself (he has recommended samento/banderol and cumanda. I just substitute the samento for regular cats claw and it works fine).
I wouldn't be entirely comfortable with IV ABX anyway, so I am thankful he has not recommended that and I am happy to stick with herbs for the lyme.
He has also put me on a 4 day rotation diet which I believe he now gives to all patients. This is to minimise the risk of developing any more food intolerances (I have had to give up eggs).
On the diet, I have also found out that if I eat certain foods - usually foods containing saturated fat - that I have a big reaction and a significant temporary worsening of symptoms. My gut aches, I get intense fatigue and have a toxic/ poisoned feeling. There are a number of studies showing that eating food with a high saturated fat content increases endotoxemia and leaky gut. My gut is very sensitive to this, even using any cooking oil at all is enough to cause a big reaction. I am totally fine with carbs/fruit and most foods provided there is practically zero sat fat.
Hi Twazzle - I think KDM has it exactly right! Here is a link to a functional medicine doctor that outlines the same domino effect as KDM.
Although this article talks about fibromyalgia mainly, he also says cfs/me has the same microbial origins in the gut.
Edit- The link works, it's just slow.
That's interesting Jim. It seems to me that most are now coming round to the idea that ME is a disease with its origins in the gut.
Hi, do you have any idea how these come back in your explanation of KDM's theory?
As for the Lactoferrin I think he prescribed it for gut inflammation, not sure about this though.
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