and fungal infections are going to play in here too right along with bacterial and virus, in a WDB exposure it may turn out to be fungal infection in the mucosa, that's what some newer research is pointing to and some older research too so not a far jump to the gut and candida Al. and loss of homeostasis, dysregulated PH, ect.
Are infections really a cause?
- Thread starter Santino
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IreneF
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Autoimmune disease is not infectious. It's caused by your own immune system attacking your body.
https://en.m.wikipedia.org/wiki/Autoimmune_disease
I can't find any information on chronic tularemia. AFAIK it's an acute and serious infection. Untreated, it has a high death rate.
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I'd also be interested to know what KDM's approach to healing the gut is. Does it involve the use of Rifaximin and probiotics and diet? Or does he have something new and more advanced? If you could share how he determines the gut is more of an issue than infections for certain patients (perhaps pre-existing IBS?) and how he addresses it I would be very thankful.Hi.. sorry for the MCAS. I am a housebound CFS patient with always very low energy, but at least I can tolerate almost everything.. I guess MCAS must be so hard on top of CFS.
I'm also a patient of KDM's and that is not always the case. With me, he didn't want to start an aggressive abx treatment; as I could understand, he thinks there is an auto-immunity going on and altered gut bacteria is one of the major triggers of it. So with me and some of the patients I know, his priority is to correct the gut microbiome. I also don't believe he makes such a big money from prescribing drugs? I don't buy the drugs from himAnd his fee as a doctor is extremely low for an European professor.
mast cell can release mediators that are toxic weither they degranulate or not. in a high dose exposure that is to much for the mast cells to keep up with mast cells will suppress the immune system, this act will allow a lot of damage to accure to the mucosa and tissue this allows possible infection to accure,
I think it may also signafiy autoimmunity, I also recall that it maybe a IgG deficiency that's causes B cell switching to IgE witch may also signafiy autoimmunity, this was from some pretty deep researching into immunology and the process of becoming sensitized and I was doing this when it was realized that mast cells plays a big role in chemical exposures, like the main players and that mast cells were the bridge between the innate and acquired immune system and that both were involved in environmental exposures. it makes sence to me that infection may accure because of autoimmunity.
the microbiome is based around a lot of talk about lifetime low dose long term exposures , higher dose shorter term or longterm(because last I checked long term is considered around 3 months and short term anything thing over a one time acute exposure accurance) needs to be reconized in my opinion more so because for one, our snot flow, and mucosa system is equipted to handle quite a bit, but different for everyone no doubt, even if you breath more with your mouth shut than open can play in, I'm just not convienced that long term low dose chemical exposure can lead to MCS or hypersensitivities or autoimmunity.
some long term low dose exposures are endoctrine disruptors and at low doses injury may be more specific as to what the chemical is and what pathways it takes where high dose exposures can just really mess you up and involve the whole body. but really to become sensitized to something a exposure has to accur, theres absolutely nothing that shows a virus will make you hypersensitive to multiple things, but it might aggervate your hypersensitive disease. autophagy dysfunction conserning the microbiome would be a reason some with what I think would be pretty active infection (s) might end up with ME/CFS but the microbiome itself points to the environment and autophagy dysfunction and many other cell dysfunctions possible could get us to the same place so there people seceptabilities might come in or it may just be about the exposure because I don't think anyone is immune from a bad toxic/chemical exposure.
I can surely see how some may be here from ingestion alone but if you have what points to the airway involvement you need to be looking at everything and not just the stomach , theres no way secondary effects to other organs can produce the same diseases as primary effects, but ya some diseases aren't really reconized unless they are fairly severe, sorry, rambleing I guess, tryin to make sence of things. I was only tested for herpes 6 and EBV, who knows what I've picked up that hasn't been tested for sence I got so ill from a moldy house, could be multiple things. biofilms can house multiple infectious agents so that might be a factor for some. some think molecular mimicry and autoimmunity is the same thing to me autoimmunity is a breakdown in immune function that changes the way it functions, may be several causes.
I think it may also signafiy autoimmunity, I also recall that it maybe a IgG deficiency that's causes B cell switching to IgE witch may also signafiy autoimmunity, this was from some pretty deep researching into immunology and the process of becoming sensitized and I was doing this when it was realized that mast cells plays a big role in chemical exposures, like the main players and that mast cells were the bridge between the innate and acquired immune system and that both were involved in environmental exposures. it makes sence to me that infection may accure because of autoimmunity.
the microbiome is based around a lot of talk about lifetime low dose long term exposures , higher dose shorter term or longterm(because last I checked long term is considered around 3 months and short term anything thing over a one time acute exposure accurance) needs to be reconized in my opinion more so because for one, our snot flow, and mucosa system is equipted to handle quite a bit, but different for everyone no doubt, even if you breath more with your mouth shut than open can play in, I'm just not convienced that long term low dose chemical exposure can lead to MCS or hypersensitivities or autoimmunity.
some long term low dose exposures are endoctrine disruptors and at low doses injury may be more specific as to what the chemical is and what pathways it takes where high dose exposures can just really mess you up and involve the whole body. but really to become sensitized to something a exposure has to accur, theres absolutely nothing that shows a virus will make you hypersensitive to multiple things, but it might aggervate your hypersensitive disease. autophagy dysfunction conserning the microbiome would be a reason some with what I think would be pretty active infection (s) might end up with ME/CFS but the microbiome itself points to the environment and autophagy dysfunction and many other cell dysfunctions possible could get us to the same place so there people seceptabilities might come in or it may just be about the exposure because I don't think anyone is immune from a bad toxic/chemical exposure.
I can surely see how some may be here from ingestion alone but if you have what points to the airway involvement you need to be looking at everything and not just the stomach , theres no way secondary effects to other organs can produce the same diseases as primary effects, but ya some diseases aren't really reconized unless they are fairly severe, sorry, rambleing I guess, tryin to make sence of things. I was only tested for herpes 6 and EBV, who knows what I've picked up that hasn't been tested for sence I got so ill from a moldy house, could be multiple things. biofilms can house multiple infectious agents so that might be a factor for some. some think molecular mimicry and autoimmunity is the same thing to me autoimmunity is a breakdown in immune function that changes the way it functions, may be several causes.
also IL-33 has resently been said to be on the bridge between innate and acquired immune system along with mast cells, but still part of the innate immune system and theres quite a bit pointing to breakdown of innate immune system, ex:natural killers cells, NK cells. IL-33 is involved in infection. this all points to th1 th2 balance and th2 side witch seems to play in possably even more so with both allergic and non-allergic hypersensitivities and possible MCAD, MCAS, and all this points to autoimmunity too or dysregulation and changes in how the immune system functions.
kangaSue
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@Santino I don't identify with having ME/CFS fatigue issues but have severely compromised GI function too and rely on a severely restricted diet. Can't say I have brain fog with it either but it came on slowly with regular flu-like symptoms to begin.
Something I was looking into was an antibody basis for my GI dysfunction in Autoimmune Autonomic Ganglionopathy which can cause severe GI issues as well as other widespread autonomic dysfunction, though not generally with the fatigue issues, but something that kept cropping up that did so was Sjogren's Syndrome.
Sjogren's can be one of those slow burners with a long lead in time (up to 10 years) for all symptoms to become apparent. With you having a positive ANA result, it would be worth looking into getting an ENA panel done for signs of Sjogren's.
Enterovirus is something else to consider, it would need a full thickness biopsy (through Dr Chia's Enterovirus Foundation?) to get a diagnosis though and it's not easy to get the co-operation of a GI doctor to do this.
http://forums.phoenixrising.me/inde...-etiology-of-gastroparesis.45508/#post-741702
I actually have a diagnosis of a form of Chronic Mesenteric Ischemia (Non-occlusive Mesenteric Ischemia) causing Gastroparesis which I think is more prevalent than indicated by the literature and mast cell activation in the GI tract is common with intestinal ischemia (again, a full thickness biopsy is needed to ascertain this which I haven't been able to get done). I think my dysfunction is still a part of a wider problem of autonomic dysfunction that is antibody related, some things that don't have easily accessible commercial tests so are mostly the domain of research studies.
I did have a couple of years of good symptom relief using nitrate vasodilators to improve blood flow to the bowel though.
http://forums.phoenixrising.me/index.php?threads/nicorandil-a-role-in-treating-cfs.29487/
Just on FMT, I don't know if you were doing it d.i.y., if so, results can sometimes be different if you can switch to another donor.
and I do know this from my research, there has been a long on going dispute going on over IgE and what it means, some believed it showed autoimmunity some thought it was just showing atopy and otherwise harmless exposure, now this new research is proving these too different IgE', low vs. high affinity and pretty sure it's pointing at autoimmunity too with the high affinity IgE
I also had to have a very restricted diet do to food allergies and intolerances and IBS , it did help and I've been able to reintroduce some things over the years
He doesn't claim to cure 80% of his patients. I am a patient of his and despite me asking several times he doesn't promise any cure rate. He does his best to uncover things that can be treated and then does his best to treat them - a lot of his patients I have spoken to have had a good increase in functioning from long term treatment. Yes some infections - most notably Lyme disease can cause MCAS. I have MCAS and Lyme, but also have EDS which is another risk factor for MCAS. Lyme is one of the listed cause of mast cell degranulation - it is well acknowledged in the literature. I know a lot of people with MCAS and Lyme. Nobody can say how many people will recover. In a Lyme group I am in the majority of cases have been undiagnosed and told they have ME/CFS. a lot of these patients are improving on various treatments.
I also test positive for Tularaemia (past infection it cant be chronic). Not many of his patients are testing positive for this one. It is a good indicator, alongside lyme serology and immune markers that there has been a tick bite as there are only two ways to pick up Tularaemia - tick bite or exposure to dead rabbits. I've never been near a dead rabbit. Also depends what country you are from - Tularaemia is much more common in Spain and very rare in the UK.
KDM makes NO money from prescribing or from testing - he only makes money from his Dr fees, which are very low - his treatment fees are also the lowest I have ever seen. His clinic doesn't make a profit.
It can only be a past infection - it can not be a chronic infection - KDM told me this himself after he did a lot of research into it.
He determines a patients issues by individually tailored testing and likewise with the treatment - each patient is treated according to their own unique results and symptoms so no one can tell you what his 'approach' is.
Interesting re the Tulareamia - I will listen later. i wont argue about the chronic v active nature of the disease, i know what KDM told me and what i have read up on.
How do you think a Dr runs an entire clinic and staff on just 90 euros for an apt (btw only new patients pay this - existing patients pay 70 and it has only just gone up to this rate). If i have an IV there i only pay for the meds and 5 - 10 euros for the nurses time - even if i am there for three hours or more! There are two nurses, a medical assistant, at least three reception admin staff. Believe me it is not a clinic that makes a profit - everyone takes a wage and then overheads are covered. that's it.
REDlabs is not KDM's lab - there are many threads discussing this. He doesn't make any money from testing at Redlabs - i believe he may have helped set the lab up many years ago and developed some of the tests, but he doesn't own it nor is he a major shareholder. He uses it because he developed many of the tests so he trsust them.
Further - he doesn't use 'aggressive' abx protocols. each patient is treated separately. if you have Lyme or other bacterial infections then abx would be necessary. Patients cant comment on treatment protocols as there is no one size fits all approach.
im listening now. The expert says that the main ways of catching it are handling of dead animals and ticks - she says tick infect rodents, rabbits etc and then people handle the dead animlas or get bitten by a tick - which is exactly what i said. Tulreamia is not endemic in UK wildlife - unlike the US its very rare here. I have never handled a dead animal.
No, taking antibiotics does not cause infections by the bacteria which the antibiotic is targeting. Some antibiotics do have side-effects, but the common ones are pretty mild. There are a number of conditions (such as severe chronic acne) for which antibiotics are taken for decades.
While the side-effects and risks do mean that healthy people shouldn't be taking them, we are not healthy people, and KDM is not treating people with antibiotics unless they test positive for bacterial infections.
I'm not sure what you mean by "aggressive". The treatments he uses are the typical ones indicated for the infections or other abnormalities found on lab results. Yes, antibiotics are more "aggressive" than doing nothing at all, but I'm not sure what you think an appropriate but less aggressive treatment would be.
I suggest using the forum's "search" function to find such discussions.
The aerosol nature of the TF infections was from dead animals or ticks - i have never handled dead animals oir run one over with a lawnmower - i imagine the case you are discussing was an active TF infection - that is possible.
I think most of KDM's patients are not on PR - are Belgian, French or Dutch and don't post here. I have met a LOT of people at his clinic that have made improvements from big to small- across a spectrum of ages and sexes etc. I really only meet them there - its a good diea to talk to patients when you are there to find out how people are doing.
I think most people it takes a lot of time and patience for big improvements, especially with regard to how old you are an years ill. I am one of his severe complex cases - house/sofa/bed wheelchair bound with MCAS and one of the treatments he prescribes keeps me out of being bedbound and able to be up and about for a few hours a day in the house. I have had trouble though tolerating treatments - i am told it will be very slow and very careful in my case.
My TF infection is considered a past infection. I have also been found to have severe leaky gut, severe bacterial translocation, Lyme, Bart, Cpn and high IL8 and PGE2, low iron, borderline thyroid and low titre ANA. He also found i had a mitral valve prolapse with regurgitation that was missed by my cardiologist here. Independently of KMD i now also have an EDSIII and MCAS dx. i have been sick for over twenty years to varying degrees, the last 8 severely ill. The MCAS meds are helping me - but they don't touch the ME symptoms much.
I think most of KDM's patients are not on PR - are Belgian, French or Dutch and don't post here. I have met a LOT of people at his clinic that have made improvements from big to small- across a spectrum of ages and sexes etc. I really only meet them there - its a good diea to talk to patients when you are there to find out how people are doing.
I think most people it takes a lot of time and patience for big improvements, especially with regard to how old you are an years ill. I am one of his severe complex cases - house/sofa/bed wheelchair bound with MCAS and one of the treatments he prescribes keeps me out of being bedbound and able to be up and about for a few hours a day in the house. I have had trouble though tolerating treatments - i am told it will be very slow and very careful in my case.
My TF infection is considered a past infection. I have also been found to have severe leaky gut, severe bacterial translocation, Lyme, Bart, Cpn and high IL8 and PGE2, low iron, borderline thyroid and low titre ANA. He also found i had a mitral valve prolapse with regurgitation that was missed by my cardiologist here. Independently of KMD i now also have an EDSIII and MCAS dx. i have been sick for over twenty years to varying degrees, the last 8 severely ill. The MCAS meds are helping me - but they don't touch the ME symptoms much.
Yes playing in hay etc would do it if an infected animal had been around there. I'm sorry you have suffered so much.
For my part I grew up in London, never went to a farm or handled farmyard materials. I hope you manage to get some relief from the treatment suggested.
For my part I grew up in London, never went to a farm or handled farmyard materials. I hope you manage to get some relief from the treatment suggested.
What is your diet? And how do you determine which foods are safe? By that I mean what symptoms do you get if you eat the wrong food and how quickly does it come on?
Thanks. Sorry, I must have forgotten what you initially wrote by the time I got to page 3 of this thread.
You can't find out if his treatments work for you or even your friend unless you both try them yourself. If KDM or anyone had a "treatment that works" on everyone well they'd be pretty famous by now.
What works for one person may not work for another.
What you're doing is looking for guarantees and certainty. Unfortunately those don't exist in life - especially in medical science and treatments. How's that for reading the whole thread this time? I'd say pretty damn good.
Most people who attend clinics don't post on forums. I have posted here and on other threads that KDM is helping me. I am not cured - far from it, but I have an improvement in functioning from a medication that has been prescribed.
Speak to the people at this clinic who are in the waiting room - I have and have met people who have gone back to work, become able to walk again after being in a wheelchair and who have been able to drive themselves there from another country after years of having their parents bring them.
On the other hand - there really isn't a cure for ME. He tests to find abnormalities based on what you tell him, like any Dr and then attempts to treat what is treatable.
I cant emphasise enough the untruth in the rumour that he makes money out of selling medicines like antibiotics. This is categorically untrue and slanderous.
Speak to the people at this clinic who are in the waiting room - I have and have met people who have gone back to work, become able to walk again after being in a wheelchair and who have been able to drive themselves there from another country after years of having their parents bring them.
On the other hand - there really isn't a cure for ME. He tests to find abnormalities based on what you tell him, like any Dr and then attempts to treat what is treatable.
I cant emphasise enough the untruth in the rumour that he makes money out of selling medicines like antibiotics. This is categorically untrue and slanderous.