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Posted: 12/28/2023 6:44:45 AM EST
[#1]
Quote HistoryOriginally Posted By 9D1Alpha: All the major things that the covid hits ; mitochondria, endothelium, gut biome , immune system, gut-brain connection. Quote HistoryOriginally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By darkd0r: @Mach @arowneragain Haven't heard from y'all for a while. How are you doing? I was significantly improved until Thanksgiving. I had been eating the Wahl’s diet pretty strictly for a few months and saw significant improvement in pain levels. I went off that diet for thanksgiving and the pain and spasms came back hard. Then a week later I had a brain MRI with contrast and body pain increased some more. The increased pain with the MRI contrast concerns the neurologist. The reduction in pain with the diet makes sense to him because it is a very anti-inflammatory diet and systemic inflammation causes increased nerve pain and dysfunction. I just get to feeling better then go off the diet because I get sick of eating nothing but raw salads with lots of bright colored veggies, virgin cold pressed olive oil, raw apple cider vinegar and fish and shell fish and some berries. He also thinks there is an immune system component. I have Small Fiber Neuropathy and all my symptoms are consistent with Non-Length Dependent Small Fiber Neuropathy, and it is confirmed by biopsy. What caused the SFN is the question, probably Lyme or an immune response to Lyme, but no way to know for sure, could also be COVID. I have been playing the guitar a lot. I am able to get into the zone at times and I get some distraction and relief from that. Back to taking Gabapentin and Viagra. They both help with the pain and spasms and muscle energy. Because diet makes such a big difference, he is having me tested for allergies to see if something can be isolated out that might be causing an immune response. An immune response is very systemically inflammatory. Some days I feel like just giving up. My wife is planning a cruise for our 40th wedding anniversary next year. She just finished 6 months of chemo and deserves a good break, but the thought of going to the airport, getting on a boat with thousands of people and not being able to completely control what food is available ( I also completely avoid pro-inflammatory seed oils and just about any commercially prepared food is full of that shit because it is cheap ) wears me out just thinking about it. Thanks for asking. Dr Terry Wahls . Her specific issue is MS but her protocol covers the spectrum of autoimmune issues . She mentions Myasthenia Gravis in this video.  https://www.youtube.com/watch?v=ZcRnjtHR6CI* besides "The Wahls Protocol " I believe she also has a book or video " minding my mitochondria ". It apparently helps anything inflammation related, which includes all of the above. All the major things that the covid hits ; mitochondria, endothelium, gut biome , immune system, gut-brain connection. The question is: is this fixable. I am ever going to get better. Been almost 4 years now. |
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NC, USA
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Posted: 12/28/2023 9:07:24 AM EST
[#2]
Quote HistoryOriginally Posted By Mach: The question is: is this fixable. I am ever going to get better. Been almost 4 years now. Quote HistoryOriginally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By darkd0r: @Mach @arowneragain Haven't heard from y'all for a while. How are you doing? I was significantly improved until Thanksgiving. I had been eating the Wahl’s diet pretty strictly for a few months and saw significant improvement in pain levels. I went off that diet for thanksgiving and the pain and spasms came back hard. Then a week later I had a brain MRI with contrast and body pain increased some more. The increased pain with the MRI contrast concerns the neurologist. The reduction in pain with the diet makes sense to him because it is a very anti-inflammatory diet and systemic inflammation causes increased nerve pain and dysfunction. I just get to feeling better then go off the diet because I get sick of eating nothing but raw salads with lots of bright colored veggies, virgin cold pressed olive oil, raw apple cider vinegar and fish and shell fish and some berries. He also thinks there is an immune system component. I have Small Fiber Neuropathy and all my symptoms are consistent with Non-Length Dependent Small Fiber Neuropathy, and it is confirmed by biopsy. What caused the SFN is the question, probably Lyme or an immune response to Lyme, but no way to know for sure, could also be COVID. I have been playing the guitar a lot. I am able to get into the zone at times and I get some distraction and relief from that. Back to taking Gabapentin and Viagra. They both help with the pain and spasms and muscle energy. Because diet makes such a big difference, he is having me tested for allergies to see if something can be isolated out that might be causing an immune response. An immune response is very systemically inflammatory. Some days I feel like just giving up. My wife is planning a cruise for our 40th wedding anniversary next year. She just finished 6 months of chemo and deserves a good break, but the thought of going to the airport, getting on a boat with thousands of people and not being able to completely control what food is available ( I also completely avoid pro-inflammatory seed oils and just about any commercially prepared food is full of that shit because it is cheap ) wears me out just thinking about it. Thanks for asking. Dr Terry Wahls . Her specific issue is MS but her protocol covers the spectrum of autoimmune issues . She mentions Myasthenia Gravis in this video. https://www.youtube.com/watch?v=ZcRnjtHR6CI* besides "The Wahls Protocol " I believe she also has a book or video " minding my mitochondria ". It apparently helps anything inflammation related, which includes all of the above. All the major things that the covid hits ; mitochondria, endothelium, gut biome , immune system, gut-brain connection. The question is: is this fixable. I am ever going to get better. Been almost 4 years now. I believe a good deal can be mitigated . Changing trajectory a couple of degrees up beats a couple of degrees down. Keep moving and keep learning . Stay positive . |
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Posted: 12/29/2023 9:50:57 PM EST
[#3]
Quote HistoryOriginally Posted By Mach: The question is: is this fixable. I am ever going to get better. Been almost 4 years now. For me, it was. I had long covid for 1 year where I could barely walk anywhere withought fainting, blackouts, no one could tell me why. Turns out, after my covid vaccine injury a year later with a pulmonary embolism and a body full of clots, Elequis, Vit C, Vit D3 and tons of sunlight, NAC, nattokinase, star anise tea, green tea, krill oil, and lots and lots of water fasting and keto knocked all symptoms out of me. I rebounded and at 52 I am in better shape than at 42. I go to the gym and run regularly, even after water fasting for 3 days with little exhaustion. Your body is extremly resilient if you push the boundaries. My military medic friend told me I would die on a treadmill 2 years ago. I told him I'd rather go out swinging than die in my bed. I only eat now when I'm hungry and my entire life has changed to where I feel much more "awake" all the time, alert, almost hyper alert. I need very little sleep or food and it drives my wife nuts. The only real issue I have now is from time to time SI joint pain will rear up from doing sprints. |
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NC, USA
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Posted: 1/1/2024 3:48:23 PM EST
[Last Edit: 9D1Alpha]
[#4]
I went back and reread through. I noticed the mention of low b12 and folate . Is there a possibility of high Homocysteine levels ? Those two generally preceed the Homocysteine issue . Look up Homocysteine and cns or immune system issues .
Low vitamin D can be bolstered with boron which is also supposed to help cns and immune issues. Secondly , boron also spares magnesium which can clear some Homocysteine. All of the above lower insulin resistance and decrease reactive oxygen species ( free radicals ). Homocysteine levels are generally looked at as a marker for cvd and cns issues . Levels go up as we age due to declining kidney function and less nutrient absorption. * its interesting that spike protein issues are very similar and an episode of one could exacerbate the other. |
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Posted: 1/1/2024 5:57:37 PM EST
[#5]
Quote HistoryOriginally Posted By 9D1Alpha: I went back and reread through. I noticed the mention of low b12 and folate . Is there a possibility of high Homocysteine levels ? Those two generally preceed the Homocysteine issue . Look up Homocysteine and cns or immune system issues . Low vitamin D can be bolstered with boron which is also supposed to help cns and immune issues. Secondly , boron also spares magnesium which can clear some Homocysteine. All of the above lower insulin resistance and decrease reactive oxygen species ( free radicals ). Homocysteine levels are generally looked at as a marker for cvd and cns issues . Levels go up as we age due to declining kidney function and less nutrient absorption. * its interesting that spike protein issues are very similar and an episode of one could exacerbate the other. That’s interesting and I’ll look into it. Thanks! |
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NC, USA
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Posted: 1/1/2024 6:28:32 PM EST
[Last Edit: 9D1Alpha]
[#6]
Quote HistoryOriginally Posted By arowneragain: That’s interesting and I’ll look into it. Thanks! Quote HistoryOriginally Posted By arowneragain: Originally Posted By 9D1Alpha: I went back and reread through. I noticed the mention of low b12 and folate . Is there a possibility of high Homocysteine levels ? Those two generally preceed the Homocysteine issue . Look up Homocysteine and cns or immune system issues . Low vitamin D can be bolstered with boron which is also supposed to help cns and immune issues. Secondly , boron also spares magnesium which can clear some Homocysteine. All of the above lower insulin resistance and decrease reactive oxygen species ( free radicals ). Homocysteine levels are generally looked at as a marker for cvd and cns issues . Levels go up as we age due to declining kidney function and less nutrient absorption. * its interesting that spike protein issues are very similar and an episode of one could exacerbate the other. That’s interesting and I’ll look into it. Thanks! Excellent . Betaine -- also called betaine anhydrous, or trimethylglycine (TMG) -- converts homocysteine. Found in beets , shellfish , broccoli, and spinach. Also can find it in supplement form or prescription strength . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3610948/#:~:text=Betaine%20donates%20methyl%20groups%20to,to%2050%25%20of%20homocysteine%20metabolism. |
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WA, USA
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Posted: 1/1/2024 9:15:06 PM EST
[#7]
Is Boron or TMG something you can take over the counter and get results? I have VA health care and my provider would never approve of it. Is there a source for NAC, Boron and TMG that can be trusted?
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NC, USA
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Posted: 1/1/2024 10:17:34 PM EST
[#8]
Quote HistoryOriginally Posted By junkie: Is Boron or TMG something you can take over the counter and get results? I have VA health care and my provider would never approve of it. Is there a source for NAC, Boron and TMG that can be trusted? IDK about NAC , but boron is nothing more than a trace mineral , and for betaine , if you wanted to get down and dirty you could go straight to the produce department. |
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WY, USA
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Posted: 1/2/2024 2:56:06 AM EST
[#9]
NAC is available otc at Walmart, Amazon, etc.
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Posted: 1/2/2024 8:56:51 AM EST
[#10]
Quote HistoryOriginally Posted By junkie: Is Boron or TMG something you can take over the counter and get results? I have VA health care and my provider would never approve of it. Is there a source for NAC, Boron and TMG that can be trusted? You can buy NAC from Swansons online, or other places. Or likely at Walmart. |
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Posted: 1/2/2024 11:39:14 AM EST
[#11]
NAC is sold at any good vitamin store, even on Amazon and the Vitamin Shoppe.
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PA, USA
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Posted: 1/8/2024 6:41:42 AM EST
[#12]
Found this report using HBOT treating Long Convid.
Hyperbaric oxygen therapy for the treatment of long COVID: early evaluation of a highly promising intervention What was interesting to me was the results. Results: HBOT yielded a statistically significant improvement in the Chalder fatigue scale (p=0.0059; d=1.75 (very large)), Global cognition (p=0.0137; d=-1.07 (large)), Executive function (p=0.0039; d=-1.06 (large)), Attention (p=0.0020; d=-1.2 (very large)), Information processing (p=0.0059; d=-1.25 (very large)) Verbal function (p=0.0098; d=-0.92 (large)). |
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Posted: 1/8/2024 9:45:56 AM EST
[#13]
Quote HistoryOriginally Posted By Nra-Life-Member: Found this report using HBOT treating Long Convid. Hyperbaric oxygen therapy for the treatment of long COVID: early evaluation of a highly promising intervention What was interesting to me was the results. Results: HBOT yielded a statistically significant improvement in the Chalder fatigue scale (p=0.0059; d=1.75 (very large)), Global cognition (p=0.0137; d=-1.07 (large)), Executive function (p=0.0039; d=-1.06 (large)), Attention (p=0.0020; d=-1.2 (very large)), Information processing (p=0.0059; d=-1.25 (very large)) Verbal function (p=0.0098; d=-0.92 (large)). In hindsight, it accomplished exactly zero of that, for me. I suspect that there are more immediate after-effects of the disease that might last for months, which HBOT might improve, and then there are endemic(?) changes to the body that are more or less permanent after covid, and HBOT won't touch those. And I have the latter. Obviously I'm no doctor. One thing HBOT accomplished for me, though: My already-nearsighted right eye never went back anywhere close to its pre-treatment prescription. It's far worse now than it ever was. My prescription has went from ~-4.5 to ~-9.0.  I would be very reluctant to suggest HBOT to anyone that was nearsighted. Since then, though, I've learned that some providers use a nose/mouth mask instead of a full-face mask to minimize oxygen contact with the eyes. Does that help? I don't know. But if I were looking into HBOT for some other reason (such as wound care, for which it seems to do wonders) I would strongly consider trying to find someone that would fit me with a mini-mask over my nose and mouth and try to minimize eye damage. |
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WY, USA
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Posted: 1/22/2024 12:06:29 AM EST
[#14]
Just watched this and thought I'd drop it here.
 Long covid and long vaccine |
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NC, USA
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Posted: 1/22/2024 11:13:57 AM EST
[Last Edit: 9D1Alpha]
[#15]
Quote HistoryOriginally Posted By darkd0r: Just watched this and thought I'd drop it here. https://www.youtube.com/watch?v=-Ea3UwYZnrAProfessor Clancy speaks about a phenotype that has a predisposition; I propose that those phenotypes are methylation polymorphisms or at a minimum victims of western diet . Dr Campbell's interviews with Professor Clancy and Angus Dalgleish are extremely educational. |
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WY, USA
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Posted: 1/25/2024 1:21:20 AM EST
[#16]
Another one - long, deep and disturbing. Also has info about proprietary treatment, but no sales pitch.
 Navigating the Minefield of Spike Protein Detox As mentioned previously, this disease/biological weapon affects multiple organs and pathways in the body. |
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NC, USA
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Posted: 1/25/2024 6:44:28 AM EST
[#17]
Quote HistoryOriginally Posted By darkd0r: Another one - long, deep and disturbing. Also has info about proprietary treatment, but no sales pitch. https://www.youtube.com/watch?v=Uq6cUHH4K1kAs mentioned previously, this disease/biological weapon affects multiple organs and pathways in the body. I listened live . Always better to watch later at 1.75x playback . Talk of quercetin inhibiting spike binding and/or entering cell was good, especially about it helping spike clear the kidneys without/minimalizing damage . Nattokinase/bromelaine to degrade/prevent protein/fibrin |
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NC, USA
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Posted: 1/25/2024 9:34:28 AM EST
[#18]
More good info ;
 Ivermectin and vaccine injury |
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Posted: 1/25/2024 9:43:03 AM EST
[#19]
So, to update....
After several months on Guanfacene I noticed that I was gaining weight. A bit of googling indicates that it can serve as an appetite stimulant, and lately I've been ravenous, and gaining weight. Is that the problem? I don't know. But there's no obvious improvement in symptoms from taking Guanfacene, now that I've been on it several months. So, long story short, I have dropped it as a treatment. Next doctor's visit I'll explore other ADHD treatments. Until then, I am looking at employment/career changes to things I can do with my current skills and without a great deal of extra education (watching online educational videos sucks with ADHD) and trying to shift to a more outside/fieldwork line of work. I seem to do best when I'm outside, not sitting at a desk trying to focus. Perhaps I will revisit that once I can try a different ADHD med. Unless a different (ie a stimulant) ADHD medicine produces significant results, I am going to move away from this quest to fix the brain fog and shift towards learning to better live (and work) with it. |
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NC, USA
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Posted: 1/25/2024 12:57:11 PM EST
[#20]
You might check into low dose methylene blue . Beware of significant drug interactions though if you decide to proceed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5018244/ |
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Posted: 1/25/2024 1:04:46 PM EST
[#21]
Did your symptoms come after Covid? Have you been evaluated for long covid? I would be curious to know what your liver function shows from your lab results. I have long covid and brain fog is one of the symptoms (not the worst) it has improved immensely since beginning antiviral therapy.
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Posted: 1/26/2024 12:24:20 AM EST
[#22]
Quote HistoryOriginally Posted By QueenDeNile: Did your symptoms come after Covid? Have you been evaluated for long covid? I would be curious to know what your liver function shows from your lab results. I have long covid and brain fog is one of the symptoms (not the worst) it has improved immensely since beginning antiviral therapy. What kind of anti-viral therapy? |
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Posted: 1/27/2024 8:40:40 AM EST
[#23]
Quote HistoryOriginally Posted By Mach: What kind of anti-viral therapy? Quote HistoryOriginally Posted By Mach: Originally Posted By QueenDeNile: Did your symptoms come after Covid? Have you been evaluated for long covid? I would be curious to know what your liver function shows from your lab results. I have long covid and brain fog is one of the symptoms (not the worst) it has improved immensely since beginning antiviral therapy. What kind of anti-viral therapy? @arowneragain what is your B12 levels? |
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Posted: 1/27/2024 8:46:36 AM EST
[#24]
Quote HistoryOriginally Posted By QueenDeNile: I am on Linzess which is prescribed off label (not sure the terminology) all I know is my platelet count has went from >12000 to 120000 and my liver is processing Lymphocytes more efficiently-my count is still too high however. @arowneragain what is your B12 levels? They were slightly low, and addressed, a year ago. 
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Posted: 1/27/2024 11:24:08 PM EST
[#25]
Quote HistoryOriginally Posted By QueenDeNile: I am on Linzess which is prescribed off label (not sure the terminology) all I know is my platelet count has went from >12000 to 120000 and my liver is processing Lymphocytes more efficiently-my count is still too high however. @arowneragain what is your B12 levels? Quote HistoryOriginally Posted By QueenDeNile: Originally Posted By Mach: Originally Posted By QueenDeNile: Did your symptoms come after Covid? Have you been evaluated for long covid? I would be curious to know what your liver function shows from your lab results. I have long covid and brain fog is one of the symptoms (not the worst) it has improved immensely since beginning antiviral therapy. What kind of anti-viral therapy? @arowneragain what is your B12 levels? My neurologist prescribed Pyridostigmine bromide for my brain fog, the same anti-nerve agent shit that some say contributed to Gulf War Syndrome. I refused to take it. |
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NC, USA
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Posted: 1/28/2024 12:27:46 AM EST
[#26]
My belief is that it is centered in the mitochondria.
https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ |
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Posted: 1/28/2024 7:25:57 AM EST
[#27]
Quote HistoryOriginally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. |
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NC, USA
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Posted: 1/28/2024 10:01:03 AM EST
[#28]
Quote HistoryOriginally Posted By Mach: Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. Quote HistoryOriginally Posted By Mach: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. It's a good starting point . https://www.triathlete.com/training/mitochondria-can-help-researchers-crack-the-training-and-aging-code/#:~:text=A%20single%20bout%20of%20exercise,have%20significant%20increases%20in%20mitochondria. |
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Posted: 1/28/2024 10:08:39 AM EST
[#29]
Quote HistoryOriginally Posted By 9D1Alpha: It's a good starting point . https://www.triathlete.com/training/mitochondria-can-help-researchers-crack-the-training-and-aging-code/#:~:text=A%20single%20bout%20of%20exercise,have%20significant%20increases%20in%20mitochondria. Quote HistoryOriginally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. It's a good starting point . https://www.triathlete.com/training/mitochondria-can-help-researchers-crack-the-training-and-aging-code/#:~:text=A%20single%20bout%20of%20exercise,have%20significant%20increases%20in%20mitochondria. Exercise is a problem for me. My muscles have no strength. Holding a cell phone to my ear for 10 minutes causes arm failure. I did 8 pushups 7 days ago and for 3 days I was in enough pain just by reaching for or picking up light things like a guitar that I had uncontrolled arm muscle failure where my arm was painfully unusable. |
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Posted: 1/29/2024 8:45:18 PM EST
[#30]
Quote HistoryOriginally Posted By Mach: Exercise is a problem for me. My muscles have no strength. Holding a cell phone to my ear for 10 minutes causes arm failure. I did 8 pushups 7 days ago and for 3 days I was in enough pain just by reaching for or picking up light things like a guitar that I had uncontrolled arm muscle failure where my arm was painfully unusable. Quote HistoryOriginally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. It's a good starting point . https://www.triathlete.com/training/mitochondria-can-help-researchers-crack-the-training-and-aging-code/#:~:text=A%20single%20bout%20of%20exercise,have%20significant%20increases%20in%20mitochondria. Exercise is a problem for me. My muscles have no strength. Holding a cell phone to my ear for 10 minutes causes arm failure. I did 8 pushups 7 days ago and for 3 days I was in enough pain just by reaching for or picking up light things like a guitar that I had uncontrolled arm muscle failure where my arm was painfully unusable. As ridiculous as this may sound, have you tried using Methylene Blue? I was recently reading this paper related to things that supposedly help mitochondria issues, in particular the brain (but I'd assume elsewhere as well). The stuff seems cheap enough. I've read the most (really) common side effect is blue pee (which makes sense since it's original purpose was as a dye). You might also try hydroxy methyl butyrate (HMB) which has shown to help treat sarcopenia. |
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FL, USA
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Posted: 1/29/2024 9:01:03 PM EST
[#31]
Huperzine A for brain fog.
Yer welcome. |
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Posted: 1/29/2024 9:09:17 PM EST
[#32]
Quote HistoryOriginally Posted By Iamhere: Huperzine A for brain fog. Yer welcome. Never heard of it but I’ll give it a shot. |
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Posted: 1/30/2024 11:09:44 AM EST
[#33]
Quote HistoryOriginally Posted By arowneragain: Never heard of it but I’ll give it a shot. Quote HistoryOriginally Posted By arowneragain: Originally Posted By Iamhere: Huperzine A for brain fog. Yer welcome. Never heard of it but I’ll give it a shot. Huperzine A increas levels of acetylcholine. So does pyridostigmine bromide which my neurologist prescribed to me, but is also the chemical given to people during the gulf war as an ant-nerve agent that some say may be responsible for Gulf War Syndrome. I don't know if it helps, because I never took any. Pyridostigmine bromide, has also been used since 1955 to treat myasthenia gravis, but the doc doesnt think I have myasthenia gravis or low acetylcholine levels. I grow very tired of not getting anywhere and have started just cancelling doctor appointments because fuck it. |
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Posted: 1/30/2024 11:18:44 AM EST
[#34]
Quote HistoryOriginally Posted By planemaker: As ridiculous as this may sound, have you tried using Methylene Blue? I was recently reading this paper related to things that supposedly help mitochondria issues, in particular the brain (but I'd assume elsewhere as well). The stuff seems cheap enough. I've read the most (really) common side effect is blue pee (which makes sense since it's original purpose was as a dye). You might also try hydroxy methyl butyrate (HMB) which has shown to help treat sarcopenia. Quote HistoryOriginally Posted By planemaker: Originally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. It's a good starting point . https://www.triathlete.com/training/mitochondria-can-help-researchers-crack-the-training-and-aging-code/#:~:text=A%20single%20bout%20of%20exercise,have%20significant%20increases%20in%20mitochondria. Exercise is a problem for me. My muscles have no strength. Holding a cell phone to my ear for 10 minutes causes arm failure. I did 8 pushups 7 days ago and for 3 days I was in enough pain just by reaching for or picking up light things like a guitar that I had uncontrolled arm muscle failure where my arm was painfully unusable. As ridiculous as this may sound, have you tried using Methylene Blue? I was recently reading this paper related to things that supposedly help mitochondria issues, in particular the brain (but I'd assume elsewhere as well). The stuff seems cheap enough. I've read the most (really) common side effect is blue pee (which makes sense since it's original purpose was as a dye). You might also try hydroxy methyl butyrate (HMB) which has shown to help treat sarcopenia. Thanks, I will look into Methylene Blue but that sounds really sketchy. HMB sounds interesting. I will look into that. I think I am going to try a bunch of stuff for Chronic Lyme like Cats claw, Oregano oil and some shrooms. Thanks for the info |
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NC, USA
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Posted: 1/30/2024 12:22:30 PM EST
[#35]
Quote HistoryOriginally Posted By Mach: Thanks, I will look into Methylene Blue but that sounds really sketchy. HMB sounds interesting. I will look into that. I think I am going to try a bunch of stuff for Chronic Lyme like Cats claw, Oregano oil and some shrooms. Thanks for the info Quote HistoryOriginally Posted By Mach: Originally Posted By planemaker: Originally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Just fucking great. I had suspected this for a long time, and would explain much of my symptoms. It is the primary reason I will not even try statins, because they have been proven to be toxic and cause mitochondria damage, ( which is what causes the muscle pain side effect ) and if that is what I have, I am not willing to make what I have even worse. The big question is, what can be done to heal mitochondria, because with all the supplements and diet change to an anti-inflammatory diet, I am still not making any real progress. It feels just like MS, gets better, gets worse, rinse and repeat, but I have no brain lesions. I have also read nerves have mitochondria too, and damage to that mitochondria produces nerve symptoms, pain, numbness, spasms from damaged nerves but without impingement. Damage to nerve mitochondria causes nerve cells to die, just like muscle cells. Something killed the vast majority of my small nerve fibers in my skin and muscles, confirmed via biopsy, called Small Fiber Neuropathy. But nobody can tell me how to fix it. It's a good starting point . https://www.triathlete.com/training/mitochondria-can-help-researchers-crack-the-training-and-aging-code/#:~:text=A%20single%20bout%20of%20exercise,have%20significant%20increases%20in%20mitochondria. Exercise is a problem for me. My muscles have no strength. Holding a cell phone to my ear for 10 minutes causes arm failure. I did 8 pushups 7 days ago and for 3 days I was in enough pain just by reaching for or picking up light things like a guitar that I had uncontrolled arm muscle failure where my arm was painfully unusable. As ridiculous as this may sound, have you tried using Methylene Blue? I was recently reading this paper related to things that supposedly help mitochondria issues, in particular the brain (but I'd assume elsewhere as well). The stuff seems cheap enough. I've read the most (really) common side effect is blue pee (which makes sense since it's original purpose was as a dye). You might also try hydroxy methyl butyrate (HMB) which has shown to help treat sarcopenia. Thanks, I will look into Methylene Blue but that sounds really sketchy. HMB sounds interesting. I will look into that. I think I am going to try a bunch of stuff for Chronic Lyme like Cats claw, Oregano oil and some shrooms. Thanks for the info My notes on the methylene blue say it needs to be high grade ( medical ...low impurities) , low -dose , and does not get along well with common medications like antidepressants ( serotonin syndrome) . |
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WY, USA
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Posted: 2/15/2024 7:16:59 PM EST
[#36]
Just stumbled onto this one. She mentioned that you can have long term spike production in your body regardless of whether you have been jabbed or not. Iver#&$÷×? has used effectively (reportedly) to help clear spike by some guests of John Campbell. I have no experience with the product mentioned in this video.
 Potential Discovery On How To Get Rid Of Spike Protein Hope Mach and arowneragain are hanging on! |
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Posted: 2/16/2024 12:38:24 AM EST
[#37]
Quote HistoryOriginally Posted By Mach: What kind of anti-viral therapy? Quote HistoryOriginally Posted By Mach: Originally Posted By QueenDeNile: Did your symptoms come after Covid? Have you been evaluated for long covid? I would be curious to know what your liver function shows from your lab results. I have long covid and brain fog is one of the symptoms (not the worst) it has improved immensely since beginning antiviral therapy. What kind of anti-viral therapy? |
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Posted: 2/16/2024 12:41:29 AM EST
[#38]
Quote HistoryOriginally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/
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Posted: 2/17/2024 5:31:10 AM EST
[#39]
Quote HistoryOriginally Posted By QueenDeNile: This is my belief as well. I have no sex hormones and no thyroid hormones. It's so weird that after a virus I just stop producing hormones. I think my cells are not communicating with the hormones. My doctor keeps increasing my dosage but my body doesn't respond. Quote HistoryOriginally Posted By QueenDeNile: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Have your Pituitary hormones been checked? You can get different endocrine glands hormone levels low or high from a pituitary tumor because the pituitary produces the hormones that control the rest of the endocrine glands, ie Thyroid, Adrenal, ovaries, etc. So if your TSH Thyroid Stimulating Hormone from the pituitary is low, your get low Thyroid hormone output. If your FSH, Folicle Stimulating Hormone from the Pituitary is low, you get low Sex Hormones. The only way to know about a pituitary tumor, 99.9% of the time a benign adenoma, is with a brain MR but low or high Pituitary produced hormones would point to that. You simply can not get the body to produce normal levels of these pituitary hormones with drugs, you have to take the hormones or remove the tumor from the pituitary and hope it restores normal function. The pituitary being compressed by the tumor can cause low hormone output and the tumor itself can produce unregulated / excess hormone output. |
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Posted: 2/17/2024 10:52:18 AM EST
[#40]
Quote HistoryOriginally Posted By Mach: The question is: is this fixable. I am ever going to get better. Been almost 4 years now. Quote HistoryOriginally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By 9D1Alpha: Originally Posted By Mach: Originally Posted By darkd0r: @Mach @arowneragain Haven't heard from y'all for a while. How are you doing? I was significantly improved until Thanksgiving. I had been eating the Wahl's diet pretty strictly for a few months and saw significant improvement in pain levels. I went off that diet for thanksgiving and the pain and spasms came back hard. Then a week later I had a brain MRI with contrast and body pain increased some more. The increased pain with the MRI contrast concerns the neurologist. The reduction in pain with the diet makes sense to him because it is a very anti-inflammatory diet and systemic inflammation causes increased nerve pain and dysfunction. I just get to feeling better then go off the diet because I get sick of eating nothing but raw salads with lots of bright colored veggies, virgin cold pressed olive oil, raw apple cider vinegar and fish and shell fish and some berries. He also thinks there is an immune system component. I have Small Fiber Neuropathy and all my symptoms are consistent with Non-Length Dependent Small Fiber Neuropathy, and it is confirmed by biopsy. What caused the SFN is the question, probably Lyme or an immune response to Lyme, but no way to know for sure, could also be COVID. I have been playing the guitar a lot. I am able to get into the zone at times and I get some distraction and relief from that. Back to taking Gabapentin and Viagra. They both help with the pain and spasms and muscle energy. Because diet makes such a big difference, he is having me tested for allergies to see if something can be isolated out that might be causing an immune response. An immune response is very systemically inflammatory. Some days I feel like just giving up. My wife is planning a cruise for our 40th wedding anniversary next year. She just finished 6 months of chemo and deserves a good break, but the thought of going to the airport, getting on a boat with thousands of people and not being able to completely control what food is available ( I also completely avoid pro-inflammatory seed oils and just about any commercially prepared food is full of that shit because it is cheap ) wears me out just thinking about it. Thanks for asking. Dr Terry Wahls . Her specific issue is MS but her protocol covers the spectrum of autoimmune issues . She mentions Myasthenia Gravis in this video. https://www.youtube.com/watch?v=ZcRnjtHR6CI* besides "The Wahls Protocol " I believe she also has a book or video " minding my mitochondria ". It apparently helps anything inflammation related, which includes all of the above. All the major things that the covid hits ; mitochondria, endothelium, gut biome , immune system, gut-brain connection. The question is: is this fixable. I am ever going to get better. Been almost 4 years now. My heart goes out to you. I have been struggling for 18 months {{shudder}}. Have you tried fasting? I know that my numbers (for me there's a direct correlation between my ferritin levels and my platelets levels in how I feel) improve with fasting. A 16 hour a day fast will maximize the release of human growth hormones which is the most effective way to heal at the cellular level. Extended fasting (more than 24 hours) will cause HGH to be released continuously. Extended fasting is proven to heal all of above listed symptoms except autoimmune. |
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Posted: 2/17/2024 11:01:30 AM EST
[#41]
Quote HistoryOriginally Posted By Mach: Have your Pituitary hormones been checked? You can get different endocrine glands hormone levels low or high from a pituitary tumor because the pituitary produces the hormones that control the rest of the endocrine glands, ie Thyroid, Adrenal, ovaries, etc. So if your TSH Thyroid Stimulating Hormone from the pituitary is low, your get low Thyroid hormone output. If your FSH, Folicle Stimulating Hormone from the Pituitary is low, you get low Sex Hormones. The only way to know about a pituitary tumor, 99.9% of the time a benign adenoma, is with a brain MR but low or high Pituitary produced hormones would point to that. You simply can not get the body to produce normal levels of these pituitary hormones with drugs, you have to take the hormones or remove the tumor from the pituitary and hope it restores normal function. The pituitary being compressed by the tumor can cause low hormone output and the tumor itself can produce unregulated / excess hormone output. Quote HistoryOriginally Posted By Mach: Originally Posted By QueenDeNile: Originally Posted By 9D1Alpha: My belief is that it is centered in the mitochondria. https://www.statnews.com/2023/08/09/long-covid-mitochondria-sars-cov-2/ Have your Pituitary hormones been checked? You can get different endocrine glands hormone levels low or high from a pituitary tumor because the pituitary produces the hormones that control the rest of the endocrine glands, ie Thyroid, Adrenal, ovaries, etc. So if your TSH Thyroid Stimulating Hormone from the pituitary is low, your get low Thyroid hormone output. If your FSH, Folicle Stimulating Hormone from the Pituitary is low, you get low Sex Hormones. The only way to know about a pituitary tumor, 99.9% of the time a benign adenoma, is with a brain MR but low or high Pituitary produced hormones would point to that. You simply can not get the body to produce normal levels of these pituitary hormones with drugs, you have to take the hormones or remove the tumor from the pituitary and hope it restores normal function. The pituitary being compressed by the tumor can cause low hormone output and the tumor itself can produce unregulated / excess hormone output. |
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Posted: 2/18/2024 8:14:53 AM EST
[#42]
I guess you know you're desperate for medical help when you read something in a thread in GD and decide to try it.
https://www.ar15.com/forums/general/Long-covid-can-destroy-your-ability-to-exercise-or-do-simple-tasks/5-2707226/?r=-1&page=5&anc=107984056#i107984266 As of five minutes ago I'm trying nicotine patches. Long story short, nicotine isn't very addictive when delivered slowly through a patch, but there's a receptor that the covid spike protein binds to, very tightly, and there's a theory that long after the disease these receptors still have the covid protein bound to them. Nicotine binds (much more strongly) to those receptors. So, to grossly oversimplify, it seems that in some people, you wear the patch, the nicotine more or less 'kicks off' the covid protein and takes its place in the receptor. Do this a week and you more or less rid the body of the bound up covid. Again, that's a kindergarden level explanation of what some docs *think* is happening. Yes, studies have been done. No, this isn't within a million miles of being proven. I'll report back. The very small but promising study: https://bioelecmed.biomedcentral.com/articles/10.1186/s42234-023-00104-7 A pretty good explanation of how they think it works, and to what extent (~55-70% of people who have tried it reported some degree of success) https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/ |
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NC, USA
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Posted: 2/18/2024 1:21:45 PM EST
[#43]
Quote HistoryOriginally Posted By arowneragain: I guess you know you're desperate for medical help when you read something in a thread in GD and decide to try it. https://www.ar15.com/forums/general/Long-covid-can-destroy-your-ability-to-exercise-or-do-simple-tasks/5-2707226/?r=-1&page=5&anc=107984056#i107984266 As of five minutes ago I'm trying nicotine patches. Long story short, nicotine isn't very addictive when delivered slowly through a patch, but there's a receptor that the covid spike protein binds to, very tightly, and there's a theory that long after the disease these receptors still have the covid protein bound to them. Nicotine binds (much more strongly) to those receptors. So, to grossly oversimplify, it seems that in some people, you wear the patch, the nicotine more or less 'kicks off' the covid protein and takes its place in the receptor. Do this a week and you more or less rid the body of the bound up covid. Again, that's a kindergarden level explanation of what some docs *think* is happening. Yes, studies have been done. No, this isn't within a million miles of being proven. I'll report back. The very small but promising study: https://bioelecmed.biomedcentral.com/articles/10.1186/s42234-023-00104-7 A pretty good explanation of how they think it works, and to what extent (~55-70% of people who have tried it reported some degree of success) https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/ That is interesting. The other thing is spike protein getting converted to amyloid fibrils by neutrophil elastase....it appears Nattokinase can break down the amyloid fibrils. Quercetin also ameleriates the inflammatory side of amyloid fribrils. If you look into amyloidosis there is a propensity for clotting. It affects each system differently. |
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WA, USA
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Posted: 2/18/2024 3:01:39 PM EST
[#44]
Quote HistoryOriginally Posted By arowneragain: I guess you know you're desperate for medical help when you read something in a thread in GD and decide to try it. https://www.ar15.com/forums/general/Long-covid-can-destroy-your-ability-to-exercise-or-do-simple-tasks/5-2707226/?r=-1&page=5&anc=107984056#i107984266 As of five minutes ago I'm trying nicotine patches. Long story short, nicotine isn't very addictive when delivered slowly through a patch, but there's a receptor that the covid spike protein binds to, very tightly, and there's a theory that long after the disease these receptors still have the covid protein bound to them. Nicotine binds (much more strongly) to those receptors. So, to grossly oversimplify, it seems that in some people, you wear the patch, the nicotine more or less 'kicks off' the covid protein and takes its place in the receptor. Do this a week and you more or less rid the body of the bound up covid. Again, that's a kindergarden level explanation of what some docs *think* is happening. Yes, studies have been done. No, this isn't within a million miles of being proven. I'll report back. The very small but promising study: https://bioelecmed.biomedcentral.com/articles/10.1186/s42234-023-00104-7 A pretty good explanation of how they think it works, and to what extent (~55-70% of people who have tried it reported some degree of success) https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/ This has been known since mid-2020. People expected smokers to get hit really hard by a nasty respiratory virus. Instead they were very under represented in serious and fatal cases. I don't remember the specifics but it has to do with the ACE2 receptors. |
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NC, USA
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Posted: 2/18/2024 3:15:43 PM EST
[#45]
Quote HistoryOriginally Posted By Mr_Woodsy: This has been known since mid-2020. People expected smokers to get hit really hard by a nasty respiratory virus. Instead they were very under represented in serious and fatal cases. I don't remember the specifics but it has to do with the ACE2 receptors. Quote HistoryOriginally Posted By Mr_Woodsy: Originally Posted By arowneragain: I guess you know you're desperate for medical help when you read something in a thread in GD and decide to try it. https://www.ar15.com/forums/general/Long-covid-can-destroy-your-ability-to-exercise-or-do-simple-tasks/5-2707226/?r=-1&page=5&anc=107984056#i107984266 As of five minutes ago I'm trying nicotine patches. Long story short, nicotine isn't very addictive when delivered slowly through a patch, but there's a receptor that the covid spike protein binds to, very tightly, and there's a theory that long after the disease these receptors still have the covid protein bound to them. Nicotine binds (much more strongly) to those receptors. So, to grossly oversimplify, it seems that in some people, you wear the patch, the nicotine more or less 'kicks off' the covid protein and takes its place in the receptor. Do this a week and you more or less rid the body of the bound up covid. Again, that's a kindergarden level explanation of what some docs *think* is happening. Yes, studies have been done. No, this isn't within a million miles of being proven. I'll report back. The very small but promising study: https://bioelecmed.biomedcentral.com/articles/10.1186/s42234-023-00104-7 A pretty good explanation of how they think it works, and to what extent (~55-70% of people who have tried it reported some degree of success) https://www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/ This has been known since mid-2020. People expected smokers to get hit really hard by a nasty respiratory virus. Instead they were very under represented in serious and fatal cases. I don't remember the specifics but it has to do with the ACE2 receptors. Dr McMillan showed too , that smokers had excess mucous and stunted cilia that didn't extend outside of the mucous . The virus used the cilia in healthy people to transfect cells. This decreased viral load . Just another neat mechanism. |
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Posted: 2/18/2024 3:37:48 PM EST
[#46]
Quote HistoryOriginally Posted By Mr_Woodsy: This has been known since mid-2020. People expected smokers to get hit really hard by a nasty respiratory virus. Instead they were very under represented in serious and fatal cases. I don't remember the specifics but it has to do with the ACE2 receptors. I wasn't aware of it until yesterday. I simply didn't know. But, yes, apparently part of the virus binds tightly to ACE receptors and nicotine can, for lack of a better word, kick the virus off and replace it. We'll see. No negative effects yet after ~8 hours. |
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WY, USA
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Posted: 2/18/2024 9:21:02 PM EST
[Last Edit: darkd0r]
[#47]
Elliot (the person talking) is not a medical professional. Posted here for general information and for those who tried everything else with no improvement.
 Eliminating Spike Protein, Blood Clots & Protecting Cardiovascular Health Edit: oops, forgot link |
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Posted: 2/18/2024 10:19:45 PM EST
[#48]
@arowneragain I think you are familiar with my history. I read the same thing on reddit. One of the hardest things for me to do after Covid is to stand in place. I will collapse every time (I have read this is common with long covid). My heart rate will get above 150 and I faint. I have worn monitors and have had stress tests and an ultrasound of my heart. My cardiologist says my heart is very healthy. I started using a nicotine patch and I haven't fainted yet. I am able to teach now standing. It's scary af but it does work.
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Posted: 3/11/2024 9:12:13 PM EST
[#49]
Quote HistoryOriginally Posted By Mach: Have your Pituitary hormones been checked? You can get different endocrine glands hormone levels low or high from a pituitary tumor because the pituitary produces the hormones that control the rest of the endocrine glands, ie Thyroid, Adrenal, ovaries, etc. So if your TSH Thyroid Stimulating Hormone from the pituitary is low, your get low Thyroid hormone output. If your FSH, Folicle Stimulating Hormone from the Pituitary is low, you get low Sex Hormones. The only way to know about a pituitary tumor, 99.9% of the time a benign adenoma, is with a brain MR but low or high Pituitary produced hormones would point to that. You simply can not get the body to produce normal levels of these pituitary hormones with drugs, you have to take the hormones or remove the tumor from the pituitary and hope it restores normal function. The pituitary being compressed by the tumor can cause low hormone output and the tumor itself can produce unregulated / excess hormone output. what's the old saying what doesn't kill you mutates and tries again?  |
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Posted: 3/12/2024 6:19:00 AM EST
[#50]
Quote HistoryOriginally Posted By QueenDeNile: @Mach I had my labs rechecked last week and I asked her to check for pituitary and pineal gland function but she didn't. My blood count is normal now which is good news (my platelets were below 8000 after Covid) but my ferritin levels are still way to high and my thyroid hormones are extremely low. My CRP levels are extremely high. My iron is fine but my saturation is extremely low. I see my doctor next week. It's so weird that she won't check my pituitary function. When I was last checked in November my thyroid was very low so she raised it more than I have ever had it raised (75mcg T4 & 35 mcg T3 raised to 150 T4 & 50 T3) and now my T4 and T3 are lower than they were in November. My ferritin levels are higher than they were in November too (215 in November to 250 now.) what's the old saying what doesn't kill you mutates and tries again? Quote HistoryOriginally Posted By QueenDeNile: Originally Posted By Mach: Have your Pituitary hormones been checked? You can get different endocrine glands hormone levels low or high from a pituitary tumor because the pituitary produces the hormones that control the rest of the endocrine glands, ie Thyroid, Adrenal, ovaries, etc. So if your TSH Thyroid Stimulating Hormone from the pituitary is low, your get low Thyroid hormone output. If your FSH, Folicle Stimulating Hormone from the Pituitary is low, you get low Sex Hormones. The only way to know about a pituitary tumor, 99.9% of the time a benign adenoma, is with a brain MR but low or high Pituitary produced hormones would point to that. You simply can not get the body to produce normal levels of these pituitary hormones with drugs, you have to take the hormones or remove the tumor from the pituitary and hope it restores normal function. The pituitary being compressed by the tumor can cause low hormone output and the tumor itself can produce unregulated / excess hormone output. what's the old saying what doesn't kill you mutates and tries again? @QueenDeNile I hope you get it straightened out. I am not a doctor, but if you are dealing with your primary doctor maybe you instead need to see an endocrinologist. 2 endocrine systems producing low hormones to me means go see an endocrinologist. I have found that primary care docs are there to send you to a specialist. Not treat you for anything more than ordinary stuff. I would ask for a referral to an endocrinologist due to the hormone issues. |
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