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Second visit to KDM - any advice?

Discussion in 'General Treatment' started by casino_4, Oct 15, 2018.

  1. casino_4

    casino_4

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    After being out of options in the Netherlands (where I live), I went to see dr. Kenny de Meirleir in Belgium. He diagnosed me with SIBO and said that my symptoms (mostly fatigue and skin rash) are caused by LPS (lipopolysacharoids). He concluded high LPS because sCD14, which he says is a surrogate marker for LPS, is increased. Also IL-6 and IL-8 are increased.
    He concluded that my intestinal permeability is increased because I have higher levels of Zonulin in my faeces. And the analysis of my gut bacteria show a high percentage of anaerobes. Particularly, a high percentage of bacteroids and alistipes, a high percentage of Clostridium IV/XIVb, and Parasutterella, and a low percentage Bifidobacterium.

    Basically, I don't know what most of this means, so I'm wondering if the conclusions he draws make sense to someone who is more knowledgeable than me.

    Based on these results I started treatment 2 months ago. The treatment consisted of the following for 8 weeks:
    - Flagyl 500 mg (an antibiotic), twice a day for 6 days, followed by 8 days of Bififlor (a probiotic) twice a day. Doing this 4 times.
    - Hydroxycobalamine 10 mg (Vit B12) twice a week (injection)
    - Choline-DHA twice a day
    - Toxaprevent 2 tablets before every meal 3 times a day
    - Gammanorm 165 mg/ml, 6 ml, once a week (injection)
    - Allegratab one tablet every morning

    The 8 weeks are almost over now, and so far I haven't felt any improvement (it hasn't gotten worse either). Next week I'm going to see KDM again, so I'm wondering if there are people here who have advice about particular treatments that I could ask him about. Because he's not a very talkative man so I want to really go there well prepared so I can get all the information I need out of him.

    Personally, I was wondering why he didn't prescribe me rifaximin as an antibiotic, because I read this is most often used to treat SIBO. Also I'm wondering if a faeces transplant would be helpful as a treatment. Any thoughts on this?

    Also I'm wondering what people think about the treatment I'm currently getting. Are there people who received a similar treatment for whom it worked?
     
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  2. mattie

    mattie Senior Member

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    To seek medical advice from forum members would be as wise as trusting KDM with your health. Even if you are currently out of options. We all are.

    KDM himself, but also his tests and treatments are just WAY to controversial in my opinion.

    an ex patient.
     
    Last edited: Oct 15, 2018
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  3. Moof

    Moof Senior Member

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    The only experience I can pass on is having to take Flagyl several times over a couple of months for an abscessed tooth that didn't want to clear up. I didn't have any gut problems at all before that, but I've had them ever since. I don't think the two things are unconnected, specially as I hadn't taken any other antibiotics for a couple of decades (I avoid them wherever possible, but this abscess needed proper treatment).

    I wouldn't argue with the hydroxocobalamin, which helps a good proportion of ME patients. It seems like an unnecessarily high dose, though, most of which your body is likely to dump. It's more usual to inject 1mg every other day to get your B12 levels up, and it must be supported by adequate folate intake, otherwise your system won't be able to utilise it. You can start spacing out the injections as soon as you stop seeing gains from it; if after three months you're not seeing any gains at all, you may not need/benefit from it.

    To be honest I don't really know what the rest of those meds are, or what they do.
     
  4. JadeD

    JadeD Senior Member

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    @casino_4

    I have spoken to several patients who have improved with his treatment, some are completely functional again. However treatment is a slow process and takes time as treatments are not yet fully optimal but the best we have atm.

    The sibo is a consequence of poor immune functioning in ME patients, 70% of which resides in the gut. The resultant sibo is responsible for bacterial translocation and high scd14 which has also been found by several other ME researchers e.g. Maureen Hanson, Armstrong, Unutumaz etc. The LPS can stimulate the immune system increasing oxidative stress and inflammation and also affects the mitochondria and energy production.

    High dose b12 is being used as a peroxynitrite scavenger to prevent oxidative stress. Look at Martin Pall’s work on nitric oxide if you want the mechanism. I find b12 helps the fatigue and pain a little.

    The antibiotic used depends on your bacterial overgrowth. Flagyl will help bring down the clostridium. He also uses rifaximin but again this depends on the results of your stool test.

    Gammanorm low dose helps protect you against the bacterial translocation and is an immunodulator. Choline-dha may help neuroinflammation and brain fog.

    He has got me from wheelchair bound to walking. He’s aware that not everyone can be cured atm, however a subgroup of his patients are very well now.

    He’s currently doing great research alongside Prof Vincent Lombardi who has just got a Ramsay award looking at the gut, the inflammation and immune activation mechanisms and how we may be able to control these with JAK-STAT inhibitors when they’re on the market.

    I have found his research fascinating, he is incredibly intelligent and cares a lot about his patients and has invested decades of his career in helping ME patients. Most of what he’s told me about the disease years ago has only just been confirmed by new ME researchers on the scene.

    All I can say is trust your instincts and if you see some symptom improvement like I have then that’s great.
     
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  5. WoolPippi

    WoolPippi Senior Member

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    Hi, I don't have much to offer so skip this post if you're tired.

    Just wanted to let you know I'm also in the Netherlands. You're right, there are not much options here. For example, there's no all round "internist" here anymore, the last one was in Utrecht and retired earlier this year. We do have some good supplement companies though (Bonusan, ELN) for analysis.

    Looking at the big picture: you chose to go at this illness via the anti-biotics route. Plus intensive knowledge of how your gut is performing. This is a very viable choice and people have recovered through this route. I know nothing about anti-biotics and seemingly also not much about the gut because I don't recognize a lot of what you say, like "Zonulin".

    I went another way: building up the cell functionality from scratch + knowledge of how all endocrine systems are performing. For this last one I visited dr. Thierry Hertoghe in Brussels, an endocrinoloog. Also not a talkative man and very expensive. I only saw him twice and did the rest myself, with help from my general practitioner.

    I want to say: don't give up hope. I figured out my illness and now I am recovered. It took about 7 years of study, one major subject per year (for example digestion, endocrinology, sleep, mitochondria, DNA 23andme, psychological management). I had to do all the research into the specific way my body functions (or not, in this case) myself.
    You're doing great, asking these questions here. Sorry I can't answer. I cheer you on as you too become expert on your own bodily system.
     
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  6. ivorin

    ivorin Senior Member

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    I'd just stop wasting money on him. Ex-patient who spent most of their savings and saw no change.
     
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  7. casino_4

    casino_4

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    I appreciate the replies. And I'm really sorry for those of you who didn't get helped. I also realize it's a risk I'm taking and it's a lot of money for me as well, but right now I really don't see other options, so I'm willing to take the risk.

    @JadeD thanks for your explanation. Can I ask how you know all of this? Did KDM tell you this or did you look this up yourself?

    @WoolPippi Did you go to Bonusan/ELN to get particular values in your blood tested? If so, how did you go about this? Your story is very interesting, I really admire the fact that you managed to get better by doing all this research. Could you give me more information about steps you took, like how you built up your cell functionality etc?

    Also, @ljimbo423 , I know you are very knowledgeable about the gut, any ideas about this post?
     
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  8. JadeD

    JadeD Senior Member

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    @casino_4 - I’ve learnt this from information sought during my consultations but mainly from hours of reading his research, books, YouTube videos and lectures, conference abstracts etc. I made sure I was well informed before I decided to see him as I would before seeing any clinician.

    I wouldn’t classify it as a risk. He manages patients clinically much like the other M.E. clinicians like Susan Levine, Dan Peterson, Jose Montoya etc trying to bring symptomatic relief and quality of life improvement. He treats what he finds athough his main focus is on the gut-immune-inflammatory interactions if you are found to have sibo from testing for example. This is based on his years of research and is finally being confirmed by other ME researchers now.

    Search for his name in YouTube and Vimeo to listen to his presentations if you are able to of course.

    Papers:
    https://www.ncbi.nlm.nih.gov/m/pubmed/?term=kenny de meirleir

    Book (very complex btw)
    https://www.amazon.com/Chronic-Fati...e meirleir&dpPl=1&dpID=51IQCvD2GzL&ref=plSrch

    IACFS conference abstract
    http://iacfsme.org/ME-CFS-Primer-Education/News/IACFSME-2016-Program.aspx

    I hope this helps you with your decision.
     
  9. ljimbo423

    ljimbo423 Senior Member

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    I read through this thread.

    This all makes good sense to me. I think the gut is the core issue and it's primarily LPS that are causing symptoms. My feeling is the best protocol I've seen for treating dysbiosis was the one Ken Lassesen used when he put his ME/CFS in remission for the third time.

    He took antibiotic herbs daily and pulsed antibiotics, with a low carb diet. This makes the most sense to me. Because taking the herbs daily helps prevent bacteria in the gut from overgrowing between antibiotic pulses.

    A low carb diet helps to lower the bacterial overgrowth because carbs are their best source of energy. Essentially lowering their numbers because of lack of food for them.

    Ken put his ME/CFS in remission in just 6 months doing this, the last time he got ME/CFS. He has been in remission now for years. Since 2013 I think.

    Herbal antibiotics are not nearly as strong as prescription antibiotics. So they do very little if any harm to the good flora (bacteria) but mostly target pathogenic bacteria in the gut.

    On the other hand, prescription antibiotics can kill off a huge amount of pathogenic bacteria in days. Where herbs might take many months to do the same thing.

    However they also kill off many good bacteria. That's why I think prescription antibiotics and antibiotic herbs, work so well together, with a low carb diet.

    They both have their strengths and weaknesses, that balance each other out to large degree.

    I am actually thinking about pulsing an antibiotic myself. I'm thinking about taking one for 5 days, with the antibiotic herbs I'm already taking and the low carb diet I'm on. If I feel improvement after 3-4 weeks, I might repeat that same treatment.
     
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  10. JadeD

    JadeD Senior Member

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    If you are not 100% sure on taking antibiotics I know KDM has been supportive of others taking herbals. There was a paper showing they could be equivalent in efficiacy, but it probably depends on what microbial overgrowth you are targeting and how specific you need to be.

    However he does try to use selective antibiotics/narrow spectrum where possible to target the pathogenic overgrowth and limit the effect on the normal/good gut bacteria. In other circumstances he’ll use broader spectrum antibiotics like rifaximin but this is dependent on your stool analysis.

    As you know he always uses probiotics for the majority of the month following short courses of antibiotics to support any undergrowth we may have, particularly in lactobacillus and bifidobacterium as a lack of these causes an inflammatory environment.

    However my understanding is that sibo and dysbiosis are secondary downstream effects in ME. Likely to be due to impaired gut immunity, the pathology of which is yet to be fully elucidated. Therefore all we can do right now is support the gut the best we can and reduce the toxic metabolites that they make like ammonia and d-lactate which affect the mitochondria and cognition amongst other things.
     
  11. ljimbo423

    ljimbo423 Senior Member

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    Hi JadeD-

    My view is that the dysbiosis and leaky gut is at the core of most ME/CFS. The immune system dysfunction and sometimes autoimmunity are caused by the effect LPS have on the immune system.

    Dysbiosis and leaky gut are very common in the general public, according to most leading functional medicine doctors. I think ME/CFS develops in just a very small percentage of people with dysbiosis and leaky gut.

    People without ME/CFS often spend years trying to reverse there SIBO or dysbiosis. There are many, many, many (okay that's enough many's :)) things that cause dysbiosis and leaky gut. Once it is well established, it takes time to reverse it and is often extremely difficult to reverse.

    Many people also need a low carb diet, to remain free of it and these are people without ME/CFS. Here are just some of the things that people are regularly exposed to or do regularly that cause dysbisois and leaky gut-

    No wonder so many people have it.:eek::eek: To me, it's not surprising given all the many millions of people around the world that have some degree of dysbiosis and leaky gut.

    That a very small percentage of them develop ME/CFS. Probably 2 main reasons are the extent of the leaky gut and genetic predisposition.
     
  12. JadeD

    JadeD Senior Member

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    @ljimbo423 - whilst I agree with you that leaky gut/bacterial translocation and LPS chronically stimulate the immune system and therefore play a key and important role in the pathophysiology of the disease and symptoms, it cannot explain everything and is too simplistic on its own as a complete theory. For example how the dysbiosis, overgrowth and leaky gut gets initiated in the first place and what role a genetic predisposition has, will be equally important in explaining the disease and paving the way for future treatments. Also why the immune system doesn’t keep the overgrowth in check like it should do, is a big factor.

    In terms of KDM’s gut hypothesis any infection can trigger an immune-mediated inflammatory condition in the gut causing bacterial overgrowth and translocation as a consequence. You may find his 2016 paper interesting. Let me know what you think.

    http://www.jimmunol.org/content/196/1_Supplement/137.4

    I’ve read that SNPs in TLRs may be important for example.

    Treating the gut and translocation effects are very important in symptom management and can bring a lot of improvement like they have yourself and myself. But they are not the whole picture as many other PwME have found. It’s like trimming the branches of a tree without getting to the root. Although I do appreciate some patients can go in to remission with this treatment alone. There must be factors that can explain why this is.

    The topic can be debated for some time and we can only go by personal experience and currently published research. Let’s hope the years of research KDM and Lombardi has in this area along with their Australian colleagues - Henry Butt and Donald Lewis, their recent Ramsay award project looking at gut inflammation, and the more recent Armstrong, Unutumaz, Hanson, and Lipkin’s work will determine the exact mechanisms at play.
     
    Last edited: Oct 17, 2018
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  13. ljimbo423

    ljimbo423 Senior Member

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    I agree. My view is, the immune activation and oxidative stress from the LPS cause the mitochondrial dysfunction found by Fluge and Mella in their study about Pyruvate Dehydrogenase inhibition in the mitochondria from up-regulated Pyruvate Kinases.

    I also think the LPS cause inflammation at the blood brain barrier (BBB), causing it to also become hyper-permeable, just like the gut. The leaky BBB causes the low grade neuro-inflammation Jared Younger has found and is working on in ME/CFS.

    Jared Younger said at the symposium last month. That the brain inflammation he found in ME/CFS, could cause all the symptoms found in ME/CFS. The fatigue, PEM, flu-like symptoms, etc.

    I think the immune system activation from the LPS, the brain inflammation and the mitochondrial dysfunction, explains all symptoms of ME/CFS.

    It also pulls together, Fluge and Mella's mitochondrial findings, Ian lipkin, Derya Unutmaz and Chris Armstrong's theory that the gut is the core issue and the brain inflammation found by Jared Younger.

    I answered this in the post above yours. Essentially, millions of people around the world have dysbiosis and leaky gut, without ME/CFS and spend years trying to get rid of it. It's often extremely difficult.

    The difficulty in getting rid of dysbiosis and leaky gut are not limited to ME/CFS. It's extremely common.

    I agree, however, there are countless things that also cause dysbiosis and leaky gut, as I mentioned in my last post. I think most people that do get ME/CFS after an infection as KDM says, is because they already have some degree of dysbiosis and leaky gut and the infection is the straw that breaks the camels back, so to speak.

    I am very confident the researchers are closing in on the answers they and we need. All of the 10 leading research teams in ME/CFS are focused on the gut, mitochondria, immune system and the brain. What I wrote above connects them all.:thumbsup:
     
  14. JadeD

    JadeD Senior Member

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    I agree with all of the links that translocated LPS has in causing chronic immune activation, Fluge and Mella's proposed mitochondrial effects, blood-brain barrier permeability etc etc and how this may cause symptoms. These are downstream effects.

    However what I'm trying to establish is what causes the intestinal permeability and dysbiosis/overgrowth that is specific to ME in the first place. The reason I say this is that several other conditions like Crohn's disease and HIV etc also have increased bacterial translocation/dysbiosis, so why is it that they have a different symptom expression to that of ME. We have to get to the root of the defective cellular mechanism in ME in order to fully treat it.

    Therefore we cannot be so reductive by saying leaky gut, bacterial translocation and its knock on effects on the immune system, brain and mitochondrial explain everything. And therefore by merely treating the leaky gut we can cure ME. Equally I cannot deny how important it is to treat this, but it isn't the full story.

    I agree that many millions of people out there have dysbiosis and maybe even leaky gut (proper name intestinal permeability) due to many other underlying reasons. From a functional medicine perspective this could be claimed as poor diet, too many antibiotics, hypothyroidism, and so on and so on. But these people do not have ME therefore what is unique to ME pathophysiology must be established.

    We cannot deny the role of the immune system in the disease not solely as a consequence of bacterial translocation (although this is important and obviously does occur) but as a potential cause of the disease and the dysbiosis/leaky gut that we're seeing. Have you ever wondered why it is so hard to treat leaky gut and overgrowth and why it keeps reoccurring when antibiotics or herbals are stopped? Maybe the paper I previously linked to gives a mechanism for this, a genetically predisposed immune defect which could be infection triggered.

    As an example, the immune defect could give rise to reactivation or acquisition of viruses in the gut which then cause the dysbiosis as a consequence. See John Chia's and the Quadram Institute's work. In this example you would need to control the virus or fix the immune defect upstream before the consequential dysbiosis and leaky gut could be fixed. These are all hypotheses by current researchers which still need to be confirmed but they quite nicely explain the complexity of the illness.

    Given that 70% of the immune system is in the gut, we could also hypothesise that the pathogenic bacteria in the gut are having a local effect on the immune cells before they may even translocate into the bloodstream. Researchers are currently looking into these interactions. As I've mentioned Lombardi and KDM are looking at the JAK-STAT pathway in immune cells (in the gut) and how they may be causing an increase in the cytokines and the resulting inflammation we're seeing in ME. Potentially using JAK-STAT inhibitors may calm down the immune mediated inflammation. This may then have a knock on effect on the leaky gut and bacteria. Jose Montoya and Dan Peterson have also referred to the JAK-STAT inhibitors and that they are excited to see if they work or not.
     
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  15. ljimbo423

    ljimbo423 Senior Member

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    @JadeD -
    I respect your opinion, I just disagree.

    I apologize @casino_4 for going off topic.
     
    Last edited: Oct 18, 2018
  16. JadeD

    JadeD Senior Member

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    @ljimbo423 - that's ok that you disagree, you are equally welcome to your own opinion. Opinions should be guided by good quality research and only time will tell.

    @casino_4 - apologies that this discussion may of gone off topic and I hope you have enough information to help form your decision. Good luck with your treatment.
     
  17. bertiedog

    bertiedog Senior Member

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    I have found that taking probiotics make SIBO worse because they are feeding the bacteria in the small bowel instead of the colon. The exceptions for me have been Symbioflor 2 and Mutaflor. Both of these helped things to calm down in the small intestines and I also had more normal stools. Along with these E Coli probiotics I was taking herbal antibiotics like Oregano, Oregano Complex or Candibactin.

    When I take the herbal antibiotics on their own and I do this on a rotation basis I don't get the same benefits. The other thing that is essential with SIBO is to take a pro kinetic for the Migrating Motor Complex which is basically not working in people with SIBO. The one that is working for me is a small amount of Triphala, 1/4 - 1/2 teaspoon mixed into my evening desert which consists of a few berries, flaxseed, psyllium, homemade yoghurt and a small amount of creme fraiche.

    I tend to have IBS that constantly changes from constipation to very loose bowels so obviously I do have to adjust the Triphala because it does have a laxative effect. However I found that recently when I was taking the herbal antibiotics and the Triphala after a week of so my stool became almost normal and I was much more comfortable under my ribs. The herbal antibiotic I was taking at that time was Biocare's Oregano Complex btw.

    Berberine always seems to come up as being very helpful with SIBO but I cannot seem to take that one because it interferes with the Prednisolone I have to take and I get severe migraine on it. I might try taking a small amount at some time but the one I have got in the cupboard has Grapefruit Seed Extract in it and that's another one I am not sure I tolerate well. It seems to me we have to be prepared for some trial and error but to do the research and make notes as to how one is responding whether it be a positive or negative reaction.

    Pam
     
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  18. ljimbo423

    ljimbo423 Senior Member

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    I think asking about the Rifaximin make sense. It is often used in treating SIBO as you say. It is not absorbed which makes it more targeted in the small intestine, with little affect in the large intestine.

    Because it needs bile to be activated and most bile is reabsorbed at the end of the small intestine. Deactivating most of the Rifaximin in the large intestine.

    I think if I had access to fecal transplant (FMT), that would be my first choice in treating SIBO or dysbiosis. One of the down sides of it is that often multiple treatments are necessary over a period of time for it to be successful.

    I think how a patient is prepared to receive the FMT and how it is delivered, as well as how healthy the donor is are also very important.
     
    Last edited: Oct 18, 2018
  19. msf

    msf Senior Member

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    I actually found this interchange really interesting, and a lot more coherent than most that have been had here over the years (many of which I have been a participant in). I take that as a sign that many people are staying to think the same way, which is encouraging in that it suggests we might be close to finding an answer.

    FWIW, I know what triggered my gut translocation problems, it was getting Yersinia. However, some people seem to get this (and even keep this) without having ME (and others get reactive arthritis), so I am sure genetics has a big part to play (it seems to run in my family for a start). So I would say triggering infection plus genetics = bacterial translocation= ME.

    Re: the thread topic, I have seen KDM for over four years, and in that time I have gone from housebound to completing a fairly intense full time master's degree. I would say KDM is as aware as anyone as to what the basic problem is, but that he does not always know what to do about it (but then neither does anyone else). I have been helped a lot by targeting the triggering infection and some of the gut treatments, but equally important were my own discoveries, chiefly trazodone for sleep and the fodmap diet.
     
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  20. casino_4

    casino_4

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    No worries about taking the thread off-topic, it was very interesting to read.

    I have my appointment on Tuesday, I will let you guys know what treatment he will suggest going forward.
     
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