After living with this issue since 18, 1978 and now 63 . I have read countless Medical Books taken every drug and supplement advised, Only Recently Thyroid issues presented themselves . This may not apply to all. My Thyroid was always within bounds. Until I had a few Thyroid Flairs. Then reading on the thyroid. I learned that all these issues I have had as a child,, Headache , OH those are Migraines. Sick to stomach for no reason, Happens and the Cystic Acne, All teenagers get that. No Sex Drive at all, Well some people just do not have a Drive. Moon shape on Finger nails , Did not have . Eye Brows width across eyes shortened as I got older. Gout Uric acid , That is Arthritis. NO it was not , is not. Optical Floaters from the gout. All this goes back to the Thyroid. You need to be in the upper ⅓ of the Box of desired area . If not from what i read this strains the Adrenal Gland . and causes the bacteria mucus in the Colon To change .. And eventually causes the Hormone PREGNENOLONE (SO) to deplete . Without this Hormone know of your others will work , your Testoterone even with injections will just disappear . all Hormones need this Pregnenolone to work. This is a blood test 10 doctors know asked for test , one did almost 0 . Asked other 9m about this Hormone known of them even heard of it. One doctor told me because it is available over the counter it is just a scam. Then I should Him my blood test before taking and after. He walked out of the exam room. When I asked for the Thyroid test most of the doctors gave me a RX for TSH. I know know there are 10 test you need . Reading about two more new test on way. I am Nit a DR forced to be my own advocate . Ask for the test , Print them out look read . any how busy busy , have to go help yourself . What can a dr do for you x times a year with 8 minute visits
Convinced of Issue that Creates the Crohns/Colits
- Thread starter BAWP
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I agree that one DEFINITELY must be their own advocate and that most Drs. simply don’t care to listen or believe anything we say because we aren’t a fellow Dr! I’m an R.N. but have had to SAVE myself from dying twice while hospitalized (as an easy example of not having somethings done in a timely fashion).
I have a theory that MY particular Crohn’s Disease was caused by taking HIGH DOSE ACCUTANE 80 mg. ? times/day, as I recall, during the early 70’s. Im in no group that is usually connected with Crohn’s — I have no familial history or relationships with the disease nor am I Middle Eastern or Jewish. But IBD was once associated as an adverse reaction to using Accutane and I strongly believe it caused mine. But whooo knows?! The cause doesn’t matter once you’re stuck with it! i.e. Accutane is rarely prescribed for teens any longer and certainly not at 80 mg. doses. However, I’ve watched my daughter and granddaughters go to dermatologist seeking cures for bad cystic acne (such as I had) yet no one will prescribe Accutane for them to try. I’m now 72 with many Crohn’s years under my belt — the best thing any of us can do is put our best foot forward each day and maintain a positive outlook. We probably all have many other conditions affecting our health, possibly due to Crohn’s, but I’ve learned to be thankful for many worse conditions or living environments that could be so much worse! [
At my lowest, I imagine I’m in an starving, war-torn, country and have been strapped down to boards in a hot desert without water, and ants are relentlessly crawling & stinging all of me. And there I lie, completely helpless and dying. Know you know I’m weird
. ]It helps me understand that I could be so less fortunate! Therefore, I think positively, realize just how good
my conditions, etc. are and feel much happier!And I strongly believe taking very high doses of Accutane in the early 70’s caused mine as an unforeseen side effect that wasn’t recognized until years later. Despite dermatologists now attempting to backtrack on those studies, they very rarely prescribe it for cystic acne any longer. I know because my daughter’s & granddaughters have deep, cystic, acne also but no dermatologist will prescribe Accutane for them. At least my c. acne was FINALLY ERADICATED, that’s the positive takeaway
. (My Dad took 1/2 the dosage I was given because he didn’t have cysts on his back, yet until he died at 86 he still had to treat his cystic acne with strong creams.)
Things common to thyroid problems and Crohn’s. Research says,MAP.
Anecdotally, interesting. Have you found any research validating your thoughts?
Also anecdotal, but on my end, I have had really bad Crohn’s all my life. Started when I was 3 and I am recovering from another resection of my small bowel as I type this. Surgery went well but we have yet to take it out for a test drive (not even liquid)
Throughout all this my thyroid is very good. My heart too. I have never had trouble sleeping, not waking up. I haven’t used an alarm clock for over 30 years (except in rare special cases, and I most often wake up before the alarm)
Years ago, my father was convinced that my thyroid was the problem, so I had all the tests done (not sure what they were since it was, I think 15 years ago)
A few years ago, I had pheumonia and so they tested my thyroid too. Normal.
But hey, Crohn’s manifest itself in different ways for different people. i’ve lost my colon and have some malabsorption of liquid although I’ve only lost about 100 cm of my small bowel. But it is in my bones, I have permanent damage in my back from coccyx to middle of the back, also in hands and feet from the crohn’s (arthritis) and it is in my blood too (very high risk of clotting)
My heart and my lungs are great and so is my thyroid.
In your case, it may be a kind of comorbidity, or maybe the crohn’s is IN the thyroid. As in, the thyroid is not the cause, but you personally have underlying thyroid issues and so the crohn’s attacked there.
Also anecdotal, but on my end, I have had really bad Crohn’s all my life. Started when I was 3 and I am recovering from another resection of my small bowel as I type this. Surgery went well but we have yet to take it out for a test drive (not even liquid)
Throughout all this my thyroid is very good. My heart too. I have never had trouble sleeping, not waking up. I haven’t used an alarm clock for over 30 years (except in rare special cases, and I most often wake up before the alarm)
Years ago, my father was convinced that my thyroid was the problem, so I had all the tests done (not sure what they were since it was, I think 15 years ago)
A few years ago, I had pheumonia and so they tested my thyroid too. Normal.
But hey, Crohn’s manifest itself in different ways for different people. i’ve lost my colon and have some malabsorption of liquid although I’ve only lost about 100 cm of my small bowel. But it is in my bones, I have permanent damage in my back from coccyx to middle of the back, also in hands and feet from the crohn’s (arthritis) and it is in my blood too (very high risk of clotting)
My heart and my lungs are great and so is my thyroid.
In your case, it may be a kind of comorbidity, or maybe the crohn’s is IN the thyroid. As in, the thyroid is not the cause, but you personally have underlying thyroid issues and so the crohn’s attacked there.
If you do an internet search: “mycobacterium avium thyroid” you will find several studies. Many references to Hashimoto’s, another autoimmune disease.
Mycobacterium avium lupus search brings up more on this autoimmune disease.
If it is truly involved in the disease process, then it does manifest itself in different ways in different people.
My thoughts are it is involved however it is not always or possibly never, the sole cause of symptoms.
My niece is currently fighting a Hashimoto’s flare. She reached out to me for assistance. I have treated her for MAP using targeted frequencies. We are waiting to see if it has any effects on her various symptoms.
Autoimmune disease seems to start out as an immune system deficiency in specific areas. The only pathogens I can identify as unchecked in my case of Crohn’s are the ones that improved my condition personally.
MAP removal resolved my psoriasis. I couldn’t tell it did much of anything else based on my other symptoms.
The other three, once removed, that helped my general symptoms were: mycoplasma, don’t know the specific strain. This stopped my crushing fatigue and bouts of pneumonia.
E-Coli, I suspect an adherent invasive strain, probably LF 82 strain if I remember correctly. Helped my guts somewhat.
The worst offender, gut wise, was H-Pylori. I was loaded with it in spite of several negative tests for it.
Another one I found that may or may not be a factor in Crohn’s is klebsiella pneumonia. Certainly was loaded with it.
Frequency treatments produced blisters of it coming out of the palms of my hands and the bottom of one foot. Only one foot which is curious. Later I found that the supplement MSM would also push it out of the body.
Our immune systems just don’t control certain organisms that wouldn’t present a problem for most. None of the above organisms are rare. They are quite common.
It is likely more than one invader causing symptoms in most cases. It is not identical for everyone.
Still learning. The Hashimoto’s may teach me something else. Hopefully, my niece can get back to normal.
Best regards.
Dan
Mycobacterium avium lupus search brings up more on this autoimmune disease.
If it is truly involved in the disease process, then it does manifest itself in different ways in different people.
My thoughts are it is involved however it is not always or possibly never, the sole cause of symptoms.
My niece is currently fighting a Hashimoto’s flare. She reached out to me for assistance. I have treated her for MAP using targeted frequencies. We are waiting to see if it has any effects on her various symptoms.
Autoimmune disease seems to start out as an immune system deficiency in specific areas. The only pathogens I can identify as unchecked in my case of Crohn’s are the ones that improved my condition personally.
MAP removal resolved my psoriasis. I couldn’t tell it did much of anything else based on my other symptoms.
The other three, once removed, that helped my general symptoms were: mycoplasma, don’t know the specific strain. This stopped my crushing fatigue and bouts of pneumonia.
E-Coli, I suspect an adherent invasive strain, probably LF 82 strain if I remember correctly. Helped my guts somewhat.
The worst offender, gut wise, was H-Pylori. I was loaded with it in spite of several negative tests for it.
Another one I found that may or may not be a factor in Crohn’s is klebsiella pneumonia. Certainly was loaded with it.
Frequency treatments produced blisters of it coming out of the palms of my hands and the bottom of one foot. Only one foot which is curious. Later I found that the supplement MSM would also push it out of the body.
Our immune systems just don’t control certain organisms that wouldn’t present a problem for most. None of the above organisms are rare. They are quite common.
It is likely more than one invader causing symptoms in most cases. It is not identical for everyone.
Still learning. The Hashimoto’s may teach me something else. Hopefully, my niece can get back to normal.
Best regards.
Dan
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- Aug 23, 2023
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The things you guys are all mentioning have one thing in common. It's not that one of them necessarily causes another, but rather that they all stem from the same core issue — gut dysbiosis.
I've been disabled with various chronic diseases for the past two decades and it amazes me how most ill people are still so ignorant about the gut microbiome.
I've been disabled with various chronic diseases for the past two decades and it amazes me how most ill people are still so ignorant about the gut microbiome.
Yeah, I remember 20 years ago, when I still had a colon, I was doing a lot of research on it. Lost in the ether now for me. Just my small bowel and me now. My father, a family doctor, got more into it for me and he is still quite into it.
After over three decades, you would think that the research would have evolved more. Sure, it needs more funding but anything aiming for a cure rather than symptomatic relief will get less interest from big pharma.
But also, I always email lead researchers and most never reply, but one leader in this fields of the gut mycrobiome did reach out and another issue, is with all the popularity of probiotic and prebiotic and healthy strain this and healthy strain that, mostly being used by consumerism to sell us things that will heal what ails us (but that is a convenient easily picked up container at your local store!) people are mostly ignorant of how incredibly complex this field is. It’s actually more complex than brain research or dna research. We’re talking about billions of billions of billions of strains and we are nowhere near understanding how to classify or let alone how to know which one does what. There aren’t even protocol.
A bit like space travelling in our solar system: we are nowhere near ever being able to build a ship who can just freely fly around the planet, not even to the moon, just you know like you see in sci fi movies, luke skywalker in his x-wing type deal just flying around willy nilly no complex preplanned trajectory. And we are nowhere near being able to build a “flying saucer” like vessel. And yet, if you speak to people many think, yeah but we can fly a a plane right? same thing but in space, right?
And here is is a bit the same thing, so I take this strain and? And we don’t know! We don’t know what that strain or those billions over there, we don’t know what they do.
Have a kosher pickle it’s good for you. Some real sauerkraut, sure. Kimchi okay. Have a dairy-free yogurts with lots of good strains in it and it’s good for you, maybe? But why?
Why? We don’t know.
And the MAP thing is definitely sound. I am certain of it. But, it’s flying an xwing around the moons of mars kinda stuff, at this point, with our current level of technology, it is science fiction.
So there is no big conspiracy against MAP (no one here said that, but many have) and it is not that people are necessarily ignorant, it’s just way too complex for us
After over three decades, you would think that the research would have evolved more. Sure, it needs more funding but anything aiming for a cure rather than symptomatic relief will get less interest from big pharma.
But also, I always email lead researchers and most never reply, but one leader in this fields of the gut mycrobiome did reach out and another issue, is with all the popularity of probiotic and prebiotic and healthy strain this and healthy strain that, mostly being used by consumerism to sell us things that will heal what ails us (but that is a convenient easily picked up container at your local store!) people are mostly ignorant of how incredibly complex this field is. It’s actually more complex than brain research or dna research. We’re talking about billions of billions of billions of strains and we are nowhere near understanding how to classify or let alone how to know which one does what. There aren’t even protocol.
A bit like space travelling in our solar system: we are nowhere near ever being able to build a ship who can just freely fly around the planet, not even to the moon, just you know like you see in sci fi movies, luke skywalker in his x-wing type deal just flying around willy nilly no complex preplanned trajectory. And we are nowhere near being able to build a “flying saucer” like vessel. And yet, if you speak to people many think, yeah but we can fly a a plane right? same thing but in space, right?
And here is is a bit the same thing, so I take this strain and? And we don’t know! We don’t know what that strain or those billions over there, we don’t know what they do.
Have a kosher pickle it’s good for you. Some real sauerkraut, sure. Kimchi okay. Have a dairy-free yogurts with lots of good strains in it and it’s good for you, maybe? But why?
Why? We don’t know.
And the MAP thing is definitely sound. I am certain of it. But, it’s flying an xwing around the moons of mars kinda stuff, at this point, with our current level of technology, it is science fiction.
So there is no big conspiracy against MAP (no one here said that, but many have) and it is not that people are necessarily ignorant, it’s just way too complex for us
- Joined
- Aug 23, 2023
- Messages
- 3
It's not that complicated. Yes, you can't do precise targeting with strains and diagnostic tests yet, but FMT (fecal microbiota transplant) is quite simple and is very promising for treating numerous chronic diseases. The main caveat is donor quality. Thus, I've been working on that for the past decade.
I created this educational site: https://humanmicrobiome.info/
And I founded humanmicrobes.org to try to find "super-donors". I've screened over a million donors thus far, but have hit various roadblocks and need help: https://forum.humanmicrobiome.info/...24-humanmicrobes-org-i-met-wit.520/#post-1370
I created this educational site: https://humanmicrobiome.info/
And I founded humanmicrobes.org to try to find "super-donors". I've screened over a million donors thus far, but have hit various roadblocks and need help: https://forum.humanmicrobiome.info/...24-humanmicrobes-org-i-met-wit.520/#post-1370
