I've been on a quest to unravel my own CFS/ME and FMS. I initially relied on doctors thinking they should be able to diagnose my condition. But after seeing dozens of local, integrative, Stanford, John Hopkins, UCSF and Mayo Clinic doctors, I realized they weren't like the doctors who's papers I read on PubMed. I'm now doing the thinking and doctors occasionally offer good ideas and run tests I can't get on my own. After going down many dead ends and curing some unrelated problems, I'm getting close to what is going on. It might be something seen in others so I thought I would share what I've discovered and see what people think.
From the early days of my problems over 10 years ago, I kept seeing evidence implicating my gut. But I was pulled off into many other possibilities such as Lyme disease, Gluten sensitivity, SIBO, Spinal stenosis, vasculitis, MS, myositis and a variety of infections. I returned to investigating my gut since antibiotics, diet and especially sugars definitely modulate my symptoms. I had significant remission from key symptoms due to treatment with Flagyl, Bactrim and a few obscure anti-microbials. An early hypothesis to which I have returned was that something in my gut was "stirred up" by the sugar causing a gut immune reaction which in turn found its way into my circulatory system and stimulated a body-wide immune reaction. That reaction seemed to vary but seemed behind all my extra-intestinal symptoms ( i.e. pain, fatigue, neurological etc..). So I finally found a marker that shows what is happening to my intestines that leads to the immune response bleeding into my greater circulatory system. I've always heard about leaky gut but its such a vague description of the complex intestinal permeability problem.
Severe Celiac Disease if allowed to go for years can mimic all the symptoms I experience. But I tried going gluten free plus thorough and repeated testing suggested I did not have Celiac Disease. But it was noticed that I had a very high F-Actin IgA antibody. That is used to monitor Celiac patients for being gluten free.
The Celiac story. Think Celiac-like damage but not caused by gluten -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809109/
https://www.inovadx.com/sites/default/files/2018-07/690418 - Celiac Brochure.pdf
This is because the gluten immune reaction in the intestines damages the intestinal smooth muscle Actin. Actin is a key structural protein of the cytoskeleton network that is particularly abundant in intestinal microvilli. But Gluten is not the only thing that damages the intestinal Actin. So the F-Actin IgA antibody test is useful for detecting this particular damage to the intestines which if severe can cause all the symptoms of Celiac but has nothing to do with gluten. Going gluten free does modify your intake of sugars and carbohydrates so may give the impression its having an impact via microbiome alterations. The problem involves the microbiome driven gut immune activity altered when the microbiome is changed that bleeds out into the body via increased permeability due to Actin damage. Just like Celiac.
Cytoskeletal Regulation of Epithelial Barrier Function During Inflammation
So my F-Actin IgA antibody was quite high on the 2 recent tests and being gluten free made no difference. So that suggests something in my gut is damaging my intestinal Actin and causing increased permeability such that my gut immune reactions are bleeding into my system. By avoiding sugar 99.99%, I'm able to decrease my overall symptoms but that's only one factor. So I've been on a search for what's in my gut that is known or believed to damage Actin. And what is in my gut that is known to damage Actin. So far I've been able to identify a few organisms in my gut using DNA stool testing that are suspect. They include a parasitic worm, blastocystis, Clostridium difficile and Clostridium perfringens. There are many other possibilities but organisms are potentially treatable and it can be tested with empiric treatment.
The treatment of the parasitic worm is fairly easy but given its a 10 year plus infection, the maximum treatment is suggested. So I was given 1200mg of Praziquantel twice day and 400mg of Albendazole also twice a day for 14 days. I then waited 2 weeks and repeated the treatment. As of this writing, all my pain is gone and many other symptoms are at an all time low. This is promising but then I moved on and am now treating the blastocystis with Nitazoxanide ( Alinia) with 500mg twice a day for 14 days. I will then treat the blastocystis one more time with Flagyl at 400mg twice a day for 10 days. So far things look quite promising. I've yet to get any doctor to consider any of this as realistic. They are so rigid and seem unable to think outside a very small box and fear curiosity and generally don't really care. I was given the drug Nucala for the severe Asthma symptoms which is seriously contraindicated for someone with a parasitic infection. When I mentioned my very high IgE, IL-5, IL-4 and eosinophillia which strongly suggest a parasite, they looked at me like I was crazy. When I also mentioned that DNA meta-genetic sequencing found a parasitic worm, they asked what meta-genetic sequencing was and how did I get it done - being suspicious rather then curious.
Since Clostridium difficile and Clostridium perfringens cannot be treated, the only strategies to control the problem would be using a aluminosilicate toxin binder. Hopefully the Clostridium perfringens toxin will bind to an aluminosilicate binder. By taking the binder 3 times a day, as it passes through my intestines unabsorbed, the toxins bind to it and they pass with the stool. This won't eliminate all the toxins but will reduce the quantity. Some strains of Clostridium difficile are known to have a toxin B that is 100 times more toxic than typical strains. Clostridium difficile toxins are known to cause extra-intestinal effects similar to Celiac. I've been taking the binder along with the parasitic treatment. I will see if I can reduce or eliminate most of my symptoms and then recheck the F-Actin IgA antibody test to see if my gut lining is healing.
So to summarize my hypothesis, I'm thinking I have a Celiac-like condition that is damaging my smooth muscle F-Actin in my intestines which is leading to Celiac-like extra-intestinal symptoms. I am testing 3 different possible organism based causes through empiric treatment. I suspect organisms are involved due to the effects of diet and anti-microbials. I would recommend anyone with CFS/ME and FMS with IBS-like symptoms that seem to be modulated with diet to ask your doctor for the F-Actin IgA antibody test. You can learn more about it below. If you are positive, you should investigate the cause and try and "treat" it down to normal. I suspect this might be a common problem not yet widely understood. Its mentioned in many research papers but the condition is not widely known like IBS or IBDs.
Labs:
http://ltd.aruplab.com/Tests/Pub/0051724
http://www.rdlinc.com/test_menu/anti-f-actin-ab-iga/
https://www.cyrexlabs.com/CyrexTestsArrays - Intestinal Antigenic Permeability Screen Actomyosin IgA
Test developer brochure
https://www.inovadx.com/sites/default/files/2018-07/690418 - Celiac Brochure.pdf
let me know what you think!
From the early days of my problems over 10 years ago, I kept seeing evidence implicating my gut. But I was pulled off into many other possibilities such as Lyme disease, Gluten sensitivity, SIBO, Spinal stenosis, vasculitis, MS, myositis and a variety of infections. I returned to investigating my gut since antibiotics, diet and especially sugars definitely modulate my symptoms. I had significant remission from key symptoms due to treatment with Flagyl, Bactrim and a few obscure anti-microbials. An early hypothesis to which I have returned was that something in my gut was "stirred up" by the sugar causing a gut immune reaction which in turn found its way into my circulatory system and stimulated a body-wide immune reaction. That reaction seemed to vary but seemed behind all my extra-intestinal symptoms ( i.e. pain, fatigue, neurological etc..). So I finally found a marker that shows what is happening to my intestines that leads to the immune response bleeding into my greater circulatory system. I've always heard about leaky gut but its such a vague description of the complex intestinal permeability problem.
Severe Celiac Disease if allowed to go for years can mimic all the symptoms I experience. But I tried going gluten free plus thorough and repeated testing suggested I did not have Celiac Disease. But it was noticed that I had a very high F-Actin IgA antibody. That is used to monitor Celiac patients for being gluten free.
The Celiac story. Think Celiac-like damage but not caused by gluten -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809109/
https://www.inovadx.com/sites/default/files/2018-07/690418 - Celiac Brochure.pdf
This is because the gluten immune reaction in the intestines damages the intestinal smooth muscle Actin. Actin is a key structural protein of the cytoskeleton network that is particularly abundant in intestinal microvilli. But Gluten is not the only thing that damages the intestinal Actin. So the F-Actin IgA antibody test is useful for detecting this particular damage to the intestines which if severe can cause all the symptoms of Celiac but has nothing to do with gluten. Going gluten free does modify your intake of sugars and carbohydrates so may give the impression its having an impact via microbiome alterations. The problem involves the microbiome driven gut immune activity altered when the microbiome is changed that bleeds out into the body via increased permeability due to Actin damage. Just like Celiac.
Cytoskeletal Regulation of Epithelial Barrier Function During Inflammation
So my F-Actin IgA antibody was quite high on the 2 recent tests and being gluten free made no difference. So that suggests something in my gut is damaging my intestinal Actin and causing increased permeability such that my gut immune reactions are bleeding into my system. By avoiding sugar 99.99%, I'm able to decrease my overall symptoms but that's only one factor. So I've been on a search for what's in my gut that is known or believed to damage Actin. And what is in my gut that is known to damage Actin. So far I've been able to identify a few organisms in my gut using DNA stool testing that are suspect. They include a parasitic worm, blastocystis, Clostridium difficile and Clostridium perfringens. There are many other possibilities but organisms are potentially treatable and it can be tested with empiric treatment.
The treatment of the parasitic worm is fairly easy but given its a 10 year plus infection, the maximum treatment is suggested. So I was given 1200mg of Praziquantel twice day and 400mg of Albendazole also twice a day for 14 days. I then waited 2 weeks and repeated the treatment. As of this writing, all my pain is gone and many other symptoms are at an all time low. This is promising but then I moved on and am now treating the blastocystis with Nitazoxanide ( Alinia) with 500mg twice a day for 14 days. I will then treat the blastocystis one more time with Flagyl at 400mg twice a day for 10 days. So far things look quite promising. I've yet to get any doctor to consider any of this as realistic. They are so rigid and seem unable to think outside a very small box and fear curiosity and generally don't really care. I was given the drug Nucala for the severe Asthma symptoms which is seriously contraindicated for someone with a parasitic infection. When I mentioned my very high IgE, IL-5, IL-4 and eosinophillia which strongly suggest a parasite, they looked at me like I was crazy. When I also mentioned that DNA meta-genetic sequencing found a parasitic worm, they asked what meta-genetic sequencing was and how did I get it done - being suspicious rather then curious.
Since Clostridium difficile and Clostridium perfringens cannot be treated, the only strategies to control the problem would be using a aluminosilicate toxin binder. Hopefully the Clostridium perfringens toxin will bind to an aluminosilicate binder. By taking the binder 3 times a day, as it passes through my intestines unabsorbed, the toxins bind to it and they pass with the stool. This won't eliminate all the toxins but will reduce the quantity. Some strains of Clostridium difficile are known to have a toxin B that is 100 times more toxic than typical strains. Clostridium difficile toxins are known to cause extra-intestinal effects similar to Celiac. I've been taking the binder along with the parasitic treatment. I will see if I can reduce or eliminate most of my symptoms and then recheck the F-Actin IgA antibody test to see if my gut lining is healing.
So to summarize my hypothesis, I'm thinking I have a Celiac-like condition that is damaging my smooth muscle F-Actin in my intestines which is leading to Celiac-like extra-intestinal symptoms. I am testing 3 different possible organism based causes through empiric treatment. I suspect organisms are involved due to the effects of diet and anti-microbials. I would recommend anyone with CFS/ME and FMS with IBS-like symptoms that seem to be modulated with diet to ask your doctor for the F-Actin IgA antibody test. You can learn more about it below. If you are positive, you should investigate the cause and try and "treat" it down to normal. I suspect this might be a common problem not yet widely understood. Its mentioned in many research papers but the condition is not widely known like IBS or IBDs.
Labs:
http://ltd.aruplab.com/Tests/Pub/0051724
http://www.rdlinc.com/test_menu/anti-f-actin-ab-iga/
https://www.cyrexlabs.com/CyrexTestsArrays - Intestinal Antigenic Permeability Screen Actomyosin IgA
Test developer brochure
https://www.inovadx.com/sites/default/files/2018-07/690418 - Celiac Brochure.pdf
let me know what you think!
