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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Dr KDM rifaximin

Messages
17
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

Can I ask trickthefox, at the beginning of your illness, did you get struck down with an infection or was it a gradual onset?
 

trickthefox

Senior Member
Messages
212
Location
Brighton
It felt like quite a dramatic onset, i had a panic attack one night, woke up the next day in a huge fog which never left, but the year prior to this i was getting lots of mood swings so it could have been a while in the making. There was deffinitely a significant point of change though. Theoretically I have lyme disease (with armin tests) but then my other biomarkers (normal C3, C4, CD57, VeGF) arnt suggestive of lyme, its all very confusing!
 
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trickthefox

Senior Member
Messages
212
Location
Brighton
This is something else ive found very interesting. Ive done my research on Acetylcholine, and have discovered a somewhat paradoxical reaction in myself.

I used to be a heavy smoker before I got sick. I've noticed during the course of this illness that if I have a 'screw health' moment and smoke, that many of my symptoms improve - most notably fatigue and cognitive function increase, also i notice my face is less puffy etc.

Nicotene works by upregulating Nicotinic Acetylcholine Receptor Function, in turn boosting Acetylcholine, whilst things like Benadryl/nytol, massivley inhibit different Acetylcholine Receptors, in turn inhibiting acetylcholine. So its curious to be that by either boosting and supressing, i am getting some improvement in symptomology.
 
Messages
17
This is something else ive found very interesting. Ive done my research on Acetylcholine, and have discovered a somewhat paradoxical reaction in myself.

I used to be a heavy smoker before I got sick. I've noticed during the course of this illness that if I have a 'screw health' moment and smoke, that many of my symptoms improve - most notably fatigue and cognitive function increase, also i notice my face is less puffy etc.

Nicotene works by upregulating Nicotinic Acetylcholine Receptor Function, in turn boosting Acetylcholine, whilst things like Benadryl/nytol, massivley inhibit different Acetylcholine Receptors, in turn inhibiting acetylcholine. So its curious to be that by either boosting and supressing, i am getting some improvement in symptomology.

Nicotine is also an antimicrobial too, so perhaps thats its mode of action. I have a lyme via iGenex diagnosis too but I'm thinking it could be more of a viral onset in my case, as EBV was the first thing to show up in testing. Diagnosis is a winding road to navigate, often filled with massive expense, opinions and then a bit of medicine too. From the recent research relating to the TRP receptors being damaged by infection, seems the acetylcholine receptors are a part of the TRP receptor family too (I'm not 100% sure here), so it may be related to that.....
 

digital dog

Senior Member
Messages
646
Trick this is VERY interesting...and obviously rather exciting for you.
I have recently read a book about hashimotos thyroiditis and in it it mentions that giving up smoking can bring on hypothyroidism. I'm not suggesting you have thyroid issues but in the book they mention a supplement/drug (cant remember which) which gives people nicotine without problematic health issues. In the light of your recent findings it might be something you could try.
I can't remember what it was called but I will try and find the book and look it up for you.
I hate the thought of you taking nytol as it comes with its own problems.
Enjoy indulging!!!
 

digital dog

Senior Member
Messages
646
Anatabine!
'Anatabine has anti inflammatory effects and reduces the expression of cytokines.'
Have no idea if this is of any help Trick but the fact that you get relief in smoking might link to anatabine.
If you need more dosage info let me know
 

trickthefox

Senior Member
Messages
212
Location
Brighton
Thanks man and thank you for the kind words, ill look into anattabine!
And yeah im the same school of thought of you, im not going to take nytol long term as its linked to lots of cognitive disorders, im not keen to aquire some more problems, and im deffinitely noticing an overall reduction in my cognitive clarity even just a week in! I will probably stop soon, but it has been very useful in giving clues as to whats going wrong, very interestingly there are articles that state that adipose stem cells can mediate actelcholine levels, which makes me feel all the more better about the route im persuing

http://www.ncbi.nlm.nih.gov/pubmed/23404260
 

digital dog

Senior Member
Messages
646
Yippee!
Yes I was wondering if the stem cell treatment you were having is taking effect as you mentioned it would be around now that things start changing.
Let me know what your thoughts are on anatanine as I have high thyroid antibodies and your post has made me consider trying the supplement to reduce them.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
ive tried antihistamenes in the past, and also mast cell stabalisers so i know its not the histamene effect

Great you have found something to help. You could be wrong though in thinking its not histamine because of the trial of mast cell stabiliser and antihistamines because a lot of people with MCAS have to try VERY many different antihistamines and combinations of mast cell drugs etc before they hit on the one that works the best. Benadryl is well known to be the most effective for people with MCAS, but is usually kept for emergency situations because of its effects on the brain etc (as you know). Not pissing on your theory, just putting this here in case it helps. The right meds for MCAS also help my fatigue, but its taken a couple of years to find the right one and the right dose.

Anatabloc was available and I was prescribed it by the Dr, but unfortunately its not available anymore.
 

Justin30

Senior Member
Messages
1,065
Nicotine was an effective treatment used by Dr Jay Goldsteim one of the pioneers of treating this illness...it didnt work form all but others it did from Betrayal by the Brain his book. There is an easy read version as well. That has been summarized with treatments.
 

trickthefox

Senior Member
Messages
212
Location
Brighton
Ive decided to stop the benadryl today, i just couldnt hack this overall feeling that i was doing myself more harm than good, my baseline of cognitive function has been dropping by the day, and depression / toxic feeling was rising, interesting little self experiment non the less that may have given more insight into this whole messy picture, ah well, on to the rifaximin!
 

digital dog

Senior Member
Messages
646
Did you take the anatibloc Justine? How did you get on? Have you considered trying to find anatabine?

Doxepin is another drug in the antihistime family. I think it would have similar side effects as the nytol though. Nytol makes me feel pretty damn edgy and low. Not worth the benefits for me.
 
Messages
17
Ive decided to stop the benadryl today, i just couldnt hack this overall feeling that i was doing myself more harm than good, my baseline of cognitive function has been dropping by the day, and depression / toxic feeling was rising, interesting little self experiment non the less that may have given more insight into this whole messy picture, ah well, on to the rifaximin!

Hey @trickthefox, hope you are doing ok!
Just found this interesting interview with Dr Driscoll, talking about here experience with these issues and her latest research, http://thelowhistaminechef.com/dr-diana-driscoll-interview-vagus-nerve-and-potsmast-cell-activation/

I found this really interesting: "I remembered from optometry school, like a gazillion years ago, about our lecture on autonomic nerves, that the vagus nerve has 2 components: the preganglionic portion of the nerve that goes from the brain down the neck to the organ be it the heart and lungs, GI tract, or whatever, and then there’s a little gap, what we call a synapse, then there’s the postganglionic portion of the nerve, which is very, very tiny. It’s almost a part of the organ itself. I wondered if my preganglionic nerve was defunct for any reason. I was considering compression at the time. Could I possibly stimulate the postganglionic portion of that nerve and have a bowel movement? As far as I knew, my postganglionic nerve should be okay. I’ve never had surgery on that area. It should be okay. The preganglionic vagus nerve stimulates the postganglionic portion by sending a neurotransmitter, acetylcholine, across that little gap which then stimulates the organ to respond. We can’t use acetylcholine as a drug inside the body because the body immediately breaks it down. Instead, we have to use an imitator, what we call an agonist.

The vagus nerve is also special. It is a nicotinic acetylcholine nerve and a good agonist for this nerve is nicotine. I called my husband and asked him to bring home a nicotine patch. I placed the patch on the lower right hand area of my abdomen, near the ileocecal valve just kind of hoping, and about an hour later things started moving, the ileocecal valve opened and amazingly I had a normal bowel movement. Shocking, right? I couldn’t continue using a nicotine patch because nicotine activates histamine producing cells. I was on fire. It looked and felt like I was being attacked by a swarm of fire ants inside my body. It was horrible, but my response taught me two things and they’re important. First, my receptors were working fine. I did not have some rare autoimmune problem causing my gastroparesis. I did not have a receptor problem. I had a neurotransmitter problem or a problem with the preganglionic portion to my vagus nerve."
 
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Justin30

Senior Member
Messages
1,065
@Troyza thanks for putting that up...I am leaning towards this whole ME thing as being part in parsal with a neurotransmitter problem....but what caused it...i think its still an encephalopathy or encephalomylietis in true ME..