Pgrovetom

Active Member
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, Fungi, autoimmune, hormonal, toxins and a variety of infections. I returned to investigating my gut since antibiotics, diet and especially sugars definitely modulate my symptoms and have done so for over 10 years. I had significant remission from key symptoms due to treatment with Flagyl, Bactrim and a few obscure anti-microbials. My high IgE, IL-5, IL-4, eosinophillia was suggestive of a parasitic infection or related gut based problem. My IBS-C fluctuated in severity along with other broader symptoms. I could eat something with a sugar such as milk, a candy bar or ice cream and I had severe asthma within 30-60 minutes. An early hypothesis to which I have returned was that something "living" 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. That marker is F-Actin IgA antibody. It indicates damage to the intestinal Actin.

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. Something living in your gut is doing the same type of damage as gluten which is leading to symptoms that mimic the Celiac extraintestinal symptoms. Since these are immune mediated, they can cause a wide variety of symptoms due to the pervasive nature of a varying over active innate and adaptive immune system.

https://arup.utah.edu/media/celiac_disease/Celiac disease Final 19.8.12.pdf

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
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913378

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.


Clostridium difficile Toxins A and B: Insights into Pathogenic Properties and Extraintestinal Effects

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4885049/

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.


Effective Sequestration of Clostridium difficile Protein Toxins by Calcium Aluminosilicate
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649210/

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.

F-Actin IgA antibody 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! Sound familiar? Think I'm crazy? Anybody had the same experience with doctors?
 
Last edited:

ponypanic

Active Member
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, Fungi, autoimmune, hormonal, toxins and a variety of infections. I returned to investigating my gut since antibiotics, diet and especially sugars definitely modulate my symptoms and have done so for over 10 years. I had significant remission from key symptoms due to treatment with Flagyl, Bactrim and a few obscure anti-microbials. My high IgE, IL-5, IL-4, eosinophillia was suggestive of a parasitic infection or related gut based problem. My IBS-C fluctuated in severity along with other broader symptoms. I could eat something with a sugar such as milk, a candy bar or ice cream and I had severe asthma within 30-60 minutes. An early hypothesis to which I have returned was that something "living" 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. That marker is F-Actin IgA antibody. It indicates damage to the intestinal Actin.

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. Something living in your gut is doing the same type of damage as gluten which is leading to symptoms that mimic the Celiac extraintestinal symptoms. Since these are immune mediated, they can cause a wide variety of symptoms due to the pervasive nature of a varying over active innate and adaptive immune system.

https://arup.utah.edu/media/celiac_disease/Celiac disease Final 19.8.12.pdf

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
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2913378

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.


Clostridium difficile Toxins A and B: Insights into Pathogenic Properties and Extraintestinal Effects

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4885049/

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.

Effective Sequestration of Clostridium difficile Protein Toxins by Calcium Aluminosilicate

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649210/

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.

F-Actin IgA antibody 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! Sound familiar? Think I'm crazy? Anybody had the same experience with doctors?
that is interesting , I’ve had low iron and low vitamin d for years, my consultant thinks could be gut related ( had colonoscopy/ endoscopy and celiac test, which were all normal) I have had IBS for years ! I’ll ask my consultant if she would be able to the test you advise. Thankyou
 

Pgrovetom

Active Member
that is interesting , I’ve had low iron and low vitamin d for years, my consultant thinks could be gut related ( had colonoscopy/ endoscopy and celiac test, which were all normal) I have had IBS for years ! I’ll ask my consultant if she would be able to the test you advise. Thankyou
Good News - After >10 years of serious FM like chronic pain and CFS-like fatigue plus other symptoms, my treatment regimen is WORKING! I've been almost pain free, reduced fatigue and much lower neurological symptoms for over a month now.

The treatment regimen was anti-parasitic treatment, a toxin binder and probiotics. Knock on wood but it does appear I had a parasite causing all my problems. Now I'm praying it was completely killed and won't come back. If it does, I know what to do.
 

pbyr

Active Member
Good News - After >10 years of serious FM like chronic pain and CFS-like fatigue plus other symptoms, my treatment regimen is WORKING! I've been almost pain free, reduced fatigue and much lower neurological symptoms for over a month now.

The treatment regimen was anti-parasitic treatment, a toxin binder and probiotics. Knock on wood but it does appear I had a parasite causing all my problems. Now I'm praying it was completely killed and won't come back. If it does, I know what to do.
I am curious to know what anti-parasitic you did and what toxin binder you used. Any tests to confirm a parasitic infection?
 

Pgrovetom

Active Member
The anti-parasitic was a combination of Praziquental and Albendazole. The binder is Zeolite ( aluminosilicate ) and can be purchased on Amazon. A major problem in medicine is the only parasite testing is a stool test that looks for eggs in the stool. This test assumes the parasite is in your gut and is subject to its life cycle. The CDC says this test is only 10% effective because not all parasites have detectable eggs and the life cycle can be up to 2 weeks and eggs are only produced during a small window. There are very few effective tests for antibodies and non for DNA or RNA. The Viome testing actually caught a few Fungi and Blastocytis in me. It can be done for $149 at https://www.viome.com/ .

Because parasites are Eukaryotes, their DNA and RNA are very diverse and not all DNA/RNA based tests can accurately detect them due to the widely diverse DNA not being catalogued as yet. If they have entered your body versus gut, the only blood ( versus stool) test that has a shot might be the Karius Dx test at https://www.kariusdx.com/ . They will only test someone in the hospital with a suspected serious infectious disease - sadly.
 

pbyr

Active Member
Thank you for the response, very good information. I would suspect that the doctors were unwilling to prescribe the pharmaceuticals.
 

Pgrovetom

Active Member
No a doctor prescribed 14 days of the maximum dose on both. He had spent time in the third world and was familiar with parasitic worms. Its true most would not. Its too odd and its not seen often in the US... or I should say caught. Who knows how many cases just go unresolved.
 

Pgrovetom

Active Member
Its complicated. Since I made this post, I've continued to struggle with GI intestinal problems with some improved and some not. I have used a couple of stool DNA (PSMOGEN) and RNA ( Viome) testing services to monitor my gut plus fairly extensive and multiple lab IgE food allergy and IgG (possible food sensitivity ) testing trying to to the bottom of what might be damaging my intestinal lining. High levels of a food IgG does not always mean a sensitivity but is a good way of finding "candidates" to eliminate.

I have found multiple causes and possible causes and I have become ANA positive suggesting an autoimmune condition. I have very high IgE ( allergy and parasite) ranging from 300- >1000 with normal being <100. I have CK bound to IgG called CK ISO Enzyme Type 1 which is also suggestive of an immune system problem. My IgG total and IgG 1 and IgG2 are all low. My T Cells are not balanced properly and NK are fairly low. My CH50 is high suggesting high complement activity. This all means my immune system is going NUTS by stuff leaking from my gut ( e.g. food peptides and gram negative LPS )into my blood and reactions in my gut also passing into my blood. My high Eosinophils are being controlled in part by Nucala, a IL5 biologic for my Asthma.

Yet when I eat any carbohydrate, my lungs fill with fluid but its not my real Asthma, plus I get very ill with body pain and numbness and more. The carbs seem to be feeding my gut bacteria in my small intestines since the reaction is quick plus this suggests an IgE allergy. I think I'm having an IgE allergy reaction to some kind of bacterial metabolite ( not the glucose carb breakdown itself) nor fructose part of sucrose which does nothing.

I have found multiple foods to which I have an IgE allergy to ( beef, milk, wheat, lamb, gluten) and multiple food sensitivities ( e.g. casein, millet). The IgE allergy reacts quickly while the sensitivity ( probably T cells) reacts the next day making it really hard to know what did what. My complement system does not like the stuff in my blood like LPS...I've found the parasite blastocystis ( types 1, 3 and 4) which can damage F-actin plus a few nasty toxin producing bacteria ( C Diff, C, Pefringens and Ecoli 104)... But these toxins usually cause diarrhea ( not me) I also have discovered via spinal MRIs that I have multiple forminal spinal stenosis in cervical/neck and lumbar/lower back) pinching my nerves that could impact my intestinal motility causing constipation ( maybe).

I do know that antibiotics help suggesting my gut bacteria play a role possibly causing SIBO which I knock down with antibiotics Rifaximin and Tinizadole course plus Linzess to stop constipation. Avoiding all the allergy and sensitivity foods helps some. I'm trying to kill the Blastocystis ( with all known blastocystis recommended anti-parasitics) but I've failed multiple times. I'm getting a Colonoscopy soon to see if its my Colon or small intestines. Everything suggests its the small intestines especially the rapidity of reaction to my lungs and how antibiotics greatly reduce this reaction but don't stop it.

So I have and have had multiple parasites ( worms = now gone plus Blastocystis- hard to kil) , some bad bacteria ( C Diff, C Perfringens, coli 104 and Klebsiella)., multiple food IgE allergies and food sensitivities. If I can all of this under control, I think things will get much better. I'm getting Nucala and Budesonide to slow my immune reaction down while I try and find all the things damaging my intestines. I can check for success through symptom reduction plus the ARUP F-actin antibody IgA test. It is normally used for gluten monitoring in Celiac but also can be used to look for F-actin damage to the intestines beyond Celiac. I'm surprised its used so little. Doctors and Medicine sucks...

I take good probiotics, amino acids, and quercetin to support my gut.

That is an update but in summary, its my intestines causing all my problems ( and maybe stenosis) but finding and stopping the multiple causes is difficult and outside most doctors knowledge and willingness to even to consider. Its my problem to analyze and utilize various doctors and testing services myself. Then I present solid ideas to doctors. Then they believe but its hard to get much help beyond that.

Hope that helps. Its quite a journey and parasites are only one part I have realized.
 

Baz493

Member
The connection between the gut, the brain, and chronic fatigue, is pretty complex. The gut produces a number of different hormones either in response to signaling from the brain or as a consequence of reactions to food. Histamine is one of these. I think that's why it can be so hard to tell many conditions apart from each other. Unlike yourself, gluten was part of my problem, resulting in lactose intolerance (due to the vili disappearing and failing to produce lactase) and with my kidneys experiencing minimal change disease because of it. The bigger part of my own problem turned out to be a toxic exposure which burnt holes in my gastrointestinal tract; that kind of thing never helps. Anyway, it's worth checking out the range of hormones and other signaling products which the gut produces in order to understand how they can trigger things like dysautonomia, thyroid issues, and mast cell issues.
 

Pgrovetom

Active Member
I've been searching for the root of my problems for 15 years and finally may have found it. I've been down almost every road for ME/CFS and tried and investigated almost everything. I've been to Stanford ( Montoya and many others), UCSF ( many specialties), John Hopkins ( myositis center). Columbia (Fallon's Lyme group), and a full workup at the Mayo Clinic Rochester with very little to show for it. Then during mitochondrial DNA testing of a muscle biopsy at UCSF, a rather serious mitochondrial DNA problem was identified. It showed a 6 kb deletion in 15% of the mtDNA in he sample. This is 5 complete genes deleted which completely disables the mitochondria from producing ATP and energy. They are essentially dead. So that suggests my cells effected by this have an 18% greater need for oxygen on average than normal cells. This suggests my respiration/circulatory system must deliver 18% more O2 just to break even with normal.

One of my main symptoms has always been awakening feeling quite ill with GI, neurological and bodywide pain symptoms. I've dug into the GI issues and concluded that the constipation was causing SIBO and IBS but what was causing the constipation. Testing suggested problems with my smooth muscle and contractions while sleeping when "rest and digest" occurs under parasympathetic control ( enteric nervous system). But what was wrong with the enteric nervous system at night. I did sleep studies which showed no sleep apnea. I tried anti-seizure medication before bed and it did nothing. Sleeping wit supplemental Oxygen seemed to help sometimes. Watching myself sleep with video and audio showed nothing obvious. Then earlier this year the symtoms became unbearable. What was going on. It felt like Hypoxia?? maybe I wasn't breathing enough or my heart was having trouble. Earlier I had heart testing that looked ok but has something changed. I noticed from overnight pulse oximetry / heart rate testing that my O2 was a little low at 92%. I also noticed my heart rate was a bit low at 49-51bpm. Neither of these would be a problem typically.

But when you combine a low heart rate with low PAO2 combined with mitochondria that need 18% more O2 then things look suspicious. So I decided to try and artificially raise my heart rate while sleeping. First I tried caffeine and it seemed to work. Then I tried theophyline ( similar to caffeine ), and my heart rate average overnight was now 62bpm. All my symptoms were now gone. I tried reducing the dosage an my heart rate began to drop and symptoms began to return. Si I've been taking either caffeine or theophyline now for over a week making adjustments and its now obvious I have been starving my brain and muscles ( including GI muscles) for Oxygen for years while sleeping. Apparently it had varied depending on what medications I tried which would modify my depth of sleep and heart rate or respiration rate. I've just worn a ZIO-patch on my heart and had a Echocardiogram and not yet gotten results. If my heart is normal than its the mtDNA or other very basic Oxygen cellular perfusion or respiration issue. I'm curious if any has seen anything like this?
 

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