Dr KDM rifaximin

[sarah darwins]

I have to agree with @Kati on this one and the Infusio Clinic seems like snake oil to me. It is fairly close to where I live so I checked out the website wanting it to be legit but it just doesn't appear to be (and I am generally pretty open to outside of the box ideas.)

All the same, best wishes for Trick that it gets him somewhere. And kudos to him for trying it and telling people about it.

Even if Infusio can't totally explain the science of it, maybe it's one of those things that just works.

 

[Gingergrrl]

All the same, best wishes for Trick that it gets him somewhere. And kudos to him for trying it and telling people about it.

Even if Infusio can't totally explain the science of it, maybe it's one of those things that just works.

Absolutely and this was not directed at him and I am hoping this treatment helps.

 

[Justin30]

Hi Justin, stem cell transplant is one ball park- where chemo is used to wipe out all immune cells- the risks presented are huge, and are many time higher when someone else's stem cells are used. These are performed for patients who have no other choice, and it is last resort.

Here though, we are not even sure what we are talking about. The way this 'institute' for lack of better words present things is. 'We will take your stem cells, we will give you vitamins, and IV every day, and in 10 days time, we give you your stems cells back' that doesn't make sense.

Are the stem cells altered to fight infection better? Is the body's immune system wiped put before reinfusing the stem cells? I don't think so. So what exactly is the treatment, and how is it possible that a treatment like that would allegedly eradicate Lyme, but not used in mainstream medicine? Is this scientifically based (backed by clinical trials) and is it FDA approved? It simply doesn't make sense.

I agree Infusio is so vague in all respects.

At this point with ME so many things are just a shot in the dark.

Like you said no clue what this illness is.

There is a couple this I think about when reading over the infusio stuff and that is. That vitamin and mineral therapy over all treatments has been best for me hands down. If damages was done to my brain or gut stem cells would seem to be the only way to regenerate this...unless these leaky gut protocols actually hold weight which in my mind only do in limited instances and are not supported by research.

I know u are very knowlegeable and just hope for all our sakes they allocate the correct funds to figure out this mess.

I would try things at this point that I would never have thoiught of doing. Whether it be stem cells, ivig, ritux, etc.

Some weird unorthdox treatments have worked for people and even people that are close to the family.

Infusio is vague without a doubt. I wish they explained the process in greater depth and had scientific backing.

 

[Justin30]

Its these clinics that should be accountable for collecting data on the disease and having it published.

So much has been tried on us with success with all different kinds of benefits its time for publishing and explanation.

Im am refering to infusio and other me/cfs clinicians......

We need money, centers of excellence and biological samples of people labelled with this disease and separated based on symptom clusters.

 

[trickthefox]

Im really not interested in this thread becoming a stem cell legitimacy thread, i can get into it and defend autologous stem cells for lyme, but im not interested in that right now as its using energy I dont have. I would urge anyone genuinely interested to look into adipose stem cells for treating autoimmune conditions without needing chemo, how they can mediate defective B and T cells which I believe is a large part of chronic lyme, and look at a few of the case studies done on dogs with treatment resistant lyme disease where they used autologous adipose stem cells.

For me the proof is in the pudding so to speak, the people i met were geunine people who are living full and happy lives now, with no additional treatment, which is very rare for lyme disease, I am happy with the route that i took. Snake oil is a pretty big claim especially if you'd have met some of these people who had been sick for years and tried countless treatments before! As for me my lymphocites are now in refference range for the first time in 6 years, something is happening, i feel my gut is just hindering my progress right now.

If we can keep it on rifaximin that would be cool, i'll happily discuss stem cells when i have the energy, but people saying 'this is snake oil' and making claims about the clinic when you havn't been there and seen how it operates is a bit much and throws me when im going through the treatment myself.

 

[trickthefox]

The thing is, in order to harvest stem cells, you have to stimulate the bone marrow to make more. Only then you get a good harvesting.

'Preparing the immune system' is insanely vague.

Incubating with cytokines is an in vitro process.

Its these clinics that should be accountable for collecting data on the disease and having it published.

So much has been tried on us with success with all different kinds of benefits its time for publishing and explanation.

Im am refering to infusio and other me/cfs clinicians......

We need money, centers of excellence and biological samples of people labelled with this disease and separated based on symptom clusters.

Im involved in one such study with infusio they are tracking my progress, Phil the CEO is actually a very knowledgable guy and was always willing to explain the science behind the stem cell and thymus peptide shots which were used to help modulate my immune system (thymus was used for HIV for a while). Treatment goes beyound 'vitamins and a spa experience' i had many IV's tailored to my specific deficits as well as some rounds of Ozone, IV antimicrobals to bring down my pathogen load, and taylor made intravenous nutrients. They are now using both fat and blood stem cells, and basing the decision of which one on the individuals unique symptom presentation. Whether or not this will be the thing that pulls me out of chronic illness is yet to be seen, but I am heading towards the three month mark which is when many of the other patients said they started noticing significant changes, so time will tell I am doing things like playing guitar for hours a day which is something I havn't done in years, I'm hoping its not short lived, but I feel good about it

 

[Gingergrrl]

@trickthefox i am thrilled that something is giving you improvements and I lack any knowledge of stem cells to comment further. I felt concerned when you said you had anaphylaxis to the IV (which was what drew me into the discussion) but the last thing I want is for you to have to put energy into defending your choices. If it's working, keep doing it! Best of luck to you and my apologies.

 

[Kati]

Sending my best wishes, @trickthefox

 

[Justin30]

fusio they are tracking my progress, Phil the CEO is actually a very knowledgable guy and was always willing to explain the science behind the stem cell and thymus peptide shots which were used to help modulate my immune system

This is good news. I hope the study is published.

I hope you and can see from your post i are feeling better which is promising.

Do you have any knowledge if he is doing this for CFS?

Dr. Daniel Petterson said with ME/CFS treat early with IVIG and nutrional therapy which I assume is IVs. They have been one of the best treatments for me they are just expensive.

Did Infusio do testing to tailor the nutrtional approach? I assume they did and this my second the Mito stuff coming out of OMI.

 

[trickthefox]

This is good news. I hope the study is published.

I hope you and can see from your post i are feeling better which is promising.

Do you have any knowledge if he is doing this for CFS?

Dr. Daniel Petterson said with ME/CFS treat early with IVIG and nutrional therapy which I assume is IVs. They have been one of the best treatments for me they are just expensive.

Did Infusio do testing to tailor the nutrtional approach? I assume they did and this my second the Mito stuff coming out of OMI.

They are treating M.E. patients! I havn't spoken to any directly, I only know of a girl who had a fibromyalgia diagnosis who was doing treatment at a simmilar time to me, but that actually turned out to be lyme, i think a significant ammount of people with the fibro/M.E. diagnosis turn out to have tick bourne disease either current or past

 

[trickthefox]

Okidoki, well ive spoken to my stem cell doc, im gona go ahead and do the two months of rifaximin, ive also looked into beta glucans which seem to boos bifido and lactobaccilus while reducing the bad mo fo's so I may get some of that shizzle too! Will let you guys know how it goes

 

[trickthefox]

Which leads me to my next question, what is the science behind such a long continual dose of quite low dose rifaximin? The studies on both SIBO and Liver problems both state that 1200 mg is required for significant results. Anyone got any insights?

 

[justy]

Which leads me to my next question, what is the science behind such a long continual dose of quite low dose rifaximin? The studies on both SIBO and Liver problems both state that 1200 mg is required for significant results. Anyone got any insights?

I was on a long and low dose for a number of reasons. One being my general sensitivity and issues with drug reactions, the other being my high bacterial load and the need to avoid severe herxheimer reactions.

The Dr is dealing with a much sicker population that just people with SIBO or leaky gut so this could explain it?

 

[trickthefox]

Hmm that wouldnt explain why he would thenbe dosing quite high dosages of other antibiotics like clindamycin, which is a very powerful antibiotic which is exactly what he did with me

 

[Hugo]

Which leads me to my next question, what is the science behind such a long continual dose of quite low dose rifaximin? The studies on both SIBO and Liver problems both state that 1200 mg is required for significant results. Anyone got any insights?

Have you asked KDM?

Sorry to hear that you have such a low tolerance on food by the way. Do you know why you had an
anaphylactic shock, do you think it was because of your stem cell therapy?

 

[trickthefox]

So ive finally found something that has dramatically helped my food reactions! A sleeping pill! Keep in mind i have tried nearly everything from nalcrom, to antihistamenes, to FMT, to probiotics, to antibiotics, Im pretty certain this is not because of nytol's antihistamene action. i recieved this message from someone who was following my blgos

"I think i may have figured it out. It happens after exercise or eating because its your parasympathetic nervous system overdriving and overcorrecting. Your parasympathetic is for after you release adrenaline to slow heart back down but it overcorrects which makes you not want to engage sympathetic system in anyway (like exerting yourself) since that is what stimulates your parasympathic, also eating does, which is why eating made us feel like death.
Because your vagal nerves control ur heart and digestion and my digestion seemed paralyzed since acetylcholine relaxes ur gut and norepinephrine contracts your gut (along with serotonin) but my sympathetic system which controls norepinephrine was overpowered by overcorrection of the parasympathetic. (Which is a type of dysautonomia really)

So after learning it was Acetylcholine that was likely the enemy, I knew the strongest OTC anticholinergic (which blocks Muscarinic Acetylcholine receptors) was Diphenhydramine.

So after i tried diphenhydramine (aka benadryl) at 25mg I could not believe that my heart rate when back to normal and my gut started contracting normally over the next couple days and I could eat wheat again! Because I do not have an actual allergy to gluten, it was an intolerance and I think you need the sympathetic adrenaline system (epinephrine and corisol, not just cortisol) to stop inflamation (though prednisone helped during the worst times last winter) and makes ur gut move along so it doesnt sit and fester and grow fungus and bad bacteria. "


So today I thought id put his theory to the test. I'd tried other antihistamenes reccomended with no luck, so i thought I had nothing to loose by trying it. Since taking it I've had pretty much zero food reactions, maybe very mildly for about 5 minutes then nothing, no debilitating fatigue, ive tried antihistamenes in the past, and also mast cell stabalisers so i know its not the histamene effect! Its still just the third day so maybe its placebo, but ill let you know if it keeps on happening. The only annoying thing is it's left me with this really weird wired feeling and last night I couldn't sleep, I normally sleep fine, its also numbed my creativity and desire to play music which is frustrating for a musician, but my food reactions seem way better already

 

[Hugo]

So ive finally found something that has dramatically helped my food reactions! A sleeping pill! Keep in mind i have tried nearly everything from nalcrom, to antihistamenes, to FMT, to probiotics, to antibiotics, Im pretty certain this is not because of nytol's antihistamene action. i recieved this message from someone who was following my blgos

"I think i may have figured it out. It happens after exercise or eating because its your parasympathetic nervous system overdriving and overcorrecting. Your parasympathetic is for after you release adrenaline to slow heart back down but it overcorrects which makes you not want to engage sympathetic system in anyway (like exerting yourself) since that is what stimulates your parasympathic, also eating does, which is why eating made us feel like death.
Because your vagal nerves control ur heart and digestion and my digestion seemed paralyzed since acetylcholine relaxes ur gut and norepinephrine contracts your gut (along with serotonin) but my sympathetic system which controls norepinephrine was overpowered by overcorrection of the parasympathetic. (Which is a type of dysautonomia really)

So after learning it was Acetylcholine that was likely the enemy, I knew the strongest OTC anticholinergic (which blocks Muscarinic Acetylcholine receptors) was Diphenhydramine.

So after i tried diphenhydramine (aka benadryl) at 25mg I could not believe that my heart rate when back to normal and my gut started contracting normally over the next couple days and I could eat wheat again! Because I do not have an actual allergy to gluten, it was an intolerance and I think you need the sympathetic adrenaline system (epinephrine and corisol, not just cortisol) to stop inflamation (though prednisone helped during the worst times last winter) and makes ur gut move along so it doesnt sit and fester and grow fungus and bad bacteria. "


So today I thought id put his theory to the test. I'd tried other antihistamenes reccomended with no luck, so i thought I had nothing to loose by trying it. Since taking it I've had pretty much zero food reactions, maybe very mildly for about 5 minutes then nothing, no debilitating fatigue, ive tried antihistamenes in the past, and also mast cell stabalisers so i know its not the histamene effect! Its still just the third day so maybe its placebo, but ill let you know if it keeps on happening. The only annoying thing is it's left me with this really weird wired feeling and last night I couldn't sleep, I normally sleep fine, its also numbed my creativity and desire to play music which is frustrating for a musician, but my food reactions seem way better already

Thats very promising, thats the medicin for motion sickness if I remembered correctly and there is a chewing gum for that and I dont think you need a prescription for that one atleast where I live. I hope it will work for you and that your creativity will find its way back somehow. As all antihistamin it probably can cause drowsiness so maybe thats it.

 

[Dufresne]

I'm not sure the explanation is correct but I think it's in the right ballpark, as my sensitivities have responded in a big way to both sympathetic and parasympathetic stimulants. In fact such approaches are the only thing to have helped outside of avoidance.

 

[Troyza]

Glad to see a bit of a positive news! Please let us know how you get on with it trickthefox.
Was surprised to see this paper, seems much more plausible after reading this today, http://www.ncbi.nlm.nih.gov/pubmed/26399744

 

[trickthefox]

Very interesting! Also interesting to self experiment, and also slightly worrying that in my individual case my food intolerence may be to do with central nervous system damage which may be harder to fix than a microbiome issue. Im not so sure about staying on the Diphenhydramine long term, but its very very interesting, ive only had one bad food reaction since starting it, and that was the day i lowered my dose to 12.5 to see if i could get away with it. This is the longest i've been without food reactions in years, just have an underlying strange feeling in my brain, and i feel its lowered my overall cognitive function and concentration a bit, but its reduced my fatigue dramatically