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Posted: 7/2/2023 8:36:56 PM EDT
[#1]
Quote HistoryOriginally Posted By MarkNH: I've had various long Covid symptoms for 2.5 years, a month ago I started taking a 600mg N-Acetyl Cysteine supplement and my brain fog has got a lot better, I have more energy, I am getting much more stuff done around the house, and I'm not forgetting as much. Don't know if it will help you but may be worth trying for a month or two. I used to take 600mg, didn't do anything noticeable for me. But i will try again. I still have a bunch of it. |
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Posted: 7/2/2023 9:06:48 PM EDT
[Last Edit: arowneragain]
[#2]
Quote HistoryOriginally Posted By Mach: I used to take 600mg, didn't do anything noticeable for me. But i will try again. I still have a bunch of it. Quote HistoryOriginally Posted By Mach: Originally Posted By MarkNH: I've had various long Covid symptoms for 2.5 years, a month ago I started taking a 600mg N-Acetyl Cysteine supplement and my brain fog has got a lot better, I have more energy, I am getting much more stuff done around the house, and I'm not forgetting as much. Don't know if it will help you but may be worth trying for a month or two. I used to take 600mg, didn't do anything noticeable for me. But i will try again. I still have a bunch of it. I need to look at what's left of a bottle to see what dose they were, but, yes, I have taken it before - more than an entire bottle and part of another - with no obvious results. I hope, this week, to get a prescription for this combo: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691274/ |
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Posted: 7/2/2023 10:10:51 PM EDT
[#3]
Quote HistoryOriginally Posted By Mach: I used to take 600mg, didn't do anything noticeable for me. But i will try again. I still have a bunch of it. Quote HistoryOriginally Posted By Mach: Originally Posted By MarkNH: I've had various long Covid symptoms for 2.5 years, a month ago I started taking a 600mg N-Acetyl Cysteine supplement and my brain fog has got a lot better, I have more energy, I am getting much more stuff done around the house, and I'm not forgetting as much. Don't know if it will help you but may be worth trying for a month or two. I used to take 600mg, didn't do anything noticeable for me. But i will try again. I still have a bunch of it. Sorry to hear it didn't work for either of you. I feel I've made a lot of progress the last couple of months, the fog is getting better, the belly/cramping/bloating/back pain problems have got better after I cut out gluten and dairy and started probiotics (S.Boulardii and Ther-Biotic Pro) daily to rebuild my gut bacteria, and I realized the rest of my pain was stress related (that didn't cause pain before at the same stress levels) and treatable as back pain. I'm far from back to 100%, I'm 40lb heavier and was drinking too much as that relieved the pain temporarily, but I'm heading in the right direction. I hope you find the jigsaw pieces that are helpful for you. |
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Posted: 7/2/2023 10:13:53 PM EDT
[#4]
Quote HistoryOriginally Posted By arowneragain: I need to look at what's left of a bottle to see what dose they were, but, yes, I have taken it before - more than an entire bottle and part of another - with no obvious results. I hope, this week, to get a prescription for this combo: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691274/ I've seen guanfacine reported as being helpful but it needs a prescription and I've seen so many clueless doctors who have no idea how to treat long covid so I've almost given up on doctor help. I've seen family doctors, allergy doctor, ent doctor, gastro doctor etc etc. They all think it's something based on their specialty and do testing but nothing comes back. |
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Posted: 7/2/2023 10:15:55 PM EDT
[#5]
Quote HistoryOriginally Posted By MarkNH: I've seen guanfacine reported as being helpful but it needs a prescription and I've seen so many clueless doctors who have no idea how to treat long covid so I've almost given up on doctor help. I've seen family doctors, allergy doctor, ent doctor, gastro doctor etc etc. They all think it's something based on their specialty and do testing but nothing comes back. I was shocked when my new nurse practitioner said she’d already prescribed it to someone. |
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Posted: 7/4/2023 9:11:02 AM EDT
[#6]
Quote HistoryOriginally Posted By MarkNH: I've seen guanfacine reported as being helpful but it needs a prescription and I've seen so many clueless doctors who have no idea how to treat long covid so I've almost given up on doctor help. I've seen family doctors, allergy doctor, ent doctor, gastro doctor etc etc. They all think it's something based on their specialty and do testing but nothing comes back. Quote HistoryOriginally Posted By MarkNH: Originally Posted By arowneragain: I need to look at what's left of a bottle to see what dose they were, but, yes, I have taken it before - more than an entire bottle and part of another - with no obvious results. I hope, this week, to get a prescription for this combo: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9691274/ I've seen guanfacine reported as being helpful but it needs a prescription and I've seen so many clueless doctors who have no idea how to treat long covid so I've almost given up on doctor help. I've seen family doctors, allergy doctor, ent doctor, gastro doctor etc etc. They all think it's something based on their specialty and do testing but nothing comes back. I will have to talk to my neurologist about that. He is pretty open to prescribing stuff off label, although he said no to ivermectin and said yes to hydroxychloroquine, though I have not tried it yet. |
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Posted: 7/8/2023 7:34:37 AM EDT
[#7]
Originally Posted By arowneragain: Figured I'd document what, if anything, comes of it. Today was an intro visit. Saw a NP, not the actual neuro doc. She said they've seen lots of brain fog patients, my symptoms were common, but honestly on the low end of the spectrum as far as severity. They scheduled some blood tests (lab drew blood today) and an MRI (scheduled for ~2 weeks out) and a sleep study (date TBD) to rule out the big, obvious things. After that they'll probably call it post-covid brain fog and discuss treatment. I asked about the possibility of HBOT and they said they'd be happy to try it, in time. Updating this thread will happen slowly. Right there with ya bro...rule out dementia, apnea, brain tumor, epilepsy, encephalitis, Wait till they find out about Vaccine & booster "fog"...(pretty sure they already know but won't prove) |
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Posted: 7/26/2023 4:55:51 PM EDT
[#8]
The next chapter in this story:
I now have a prescription for guanfacene. It's used to treat high BP, ADHD, and PTSD. I should start on it tomorrow. Waiting for the pharmacy to fill it. I'll start with a low dose combined with N-Acetyl Cysteine. |
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Posted: 7/27/2023 12:58:54 PM EDT
[#9]
How you doin'?
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Posted: 7/27/2023 1:48:06 PM EDT
[#10]
Quote HistoryOriginally Posted By dragoontwo: How you doin'? Waiting on the pharmacy to fill the 'scrip. Hopefully they'll have it today, and I can take the first dose tonight and start observing (or looking for) changes(?) tomorrow. |
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Posted: 7/27/2023 6:27:48 PM EDT
[#11]
Please keep us up to date, still following.
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Posted: 7/29/2023 3:04:00 PM EDT
[#12]
Quote HistoryOriginally Posted By Ascendent: Please keep us up to date, still following. x2 |
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Posted: 7/29/2023 3:15:25 PM EDT
[#13]
Quote HistoryOriginally Posted By arowneragain: The next chapter in this story: I now have a prescription for guanfacene. It's used to treat high BP, ADHD, and PTSD. I should start on it tomorrow. Waiting for the pharmacy to fill it. I'll start with a low dose combined with N-Acetyl Cysteine. what is it supposed to do to you? |
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Posted: 7/29/2023 3:26:42 PM EDT
[#14]
Quote HistoryOriginally Posted By Mach: what is it supposed to do to you? It has apparently helped some people with the brain fog and headaches. It has something to do with the regulation of noradrenaline/norepinephrine and how it's handled by neurotransmitters. I'd be lying if I tried to explain beyond that; it quickly gets over my head. But it seems to have a calming effect, which helps with BP, anxiety, PTSD, ADHD, and, in some cases, brain fog. I'll take my third dose tonight. Spoiler alert: I am not expecting results until after 30 days when I increase the dose beyond the start dose. They suggest taking it at bedtime because it makes you sleepy. Well, it certainly does that, thus far. 
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Posted: 7/29/2023 3:38:06 PM EDT
[#15]
Tag
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Posted: 7/30/2023 10:54:36 PM EDT
[Last Edit: cmw]
[#16]
Been following this off and on.
Just occurred to me to suggest the supplement Sulbutiamine to those of you with low energy or brain fog. It's a modified thiamine (B1) that is more available and persistent in the brain (short version). It has been used for a variety of conditions from asthenia, psycological ED, to ADHD and more. I suggest it to patients who are having difficulty with energy and concentration -most report noticeable good results. A few (early stage) dementia/Alzheimers patients really get a boost out of it IME. I suggest taking a moderate B complex along with Sulbutiamine. I'm a chiropractor ~ nutrition and supplements are a common part of my practice. My personal experience with Sulbutiamine is that in low doses, around 200mg, it provides a mild background 'lift'. 400mg and I've got a noticeable increase in focus and drive/motivation. I don't use it myself to any great degree now, but when studying for national board exams at the end of school 800mg with 150mg caffeine was like a fresh start for another 4 hours at the books. At low doses the effects seem very sustainable and comfortable, higher doses too many days per week and the positive motivation seems to drop off some and the rough edges of feeling stimulated start to show through, IMO. Studies indicate a tolerance can build up fairly quickly at higher doses. None of this is medical advice, I'm a doctor but I'm not your doctor, Sulbutiamine is a dietary supplement and is not suggested or approved as a treatment for any disorder by me or the FDA, can disturb (delay) sleep, can be habit forming - people can develop a tolerance, your mileage may vary... |
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Posted: 7/31/2023 12:04:28 AM EDT
[#17]
Quote HistoryOriginally Posted By cmw: Been following this off and on. Just occurred to me to suggest the supplement Sulbutiamine to those of you with low energy or brain fog. It's a modified thiamine (B1) that is more available and persistent in the brain (short version). It has been used for a variety of conditions from asthenia, psycological ED, to ADHD and more. I suggest it to patients who are having difficulty with energy and concentration -most report noticeable good results. A few (early stage) dementia/Alzheimers patients really get a boost out of it IME. I suggest taking a moderate B complex along with Sulbutiamine. I'm a chiropractor ~ nutrition and supplements are a common part of my practice. My personal experience with Sulbutiamine is that in low doses, around 200mg, it provides a mild background 'lift'. 400mg and I've got a noticeable increase in focus and drive/motivation. I don't use it myself to any great degree now, but when studying for national board exams at the end of school 800mg with 150mg caffeine was like a fresh start for another 4 hours at the books. At low doses the effects seem very sustainable and comfortable, higher doses too many days per week and the positive motivation seems to drop off some and the rough edges of feeling stimulated start to show through, IMO. Studies indicate a tolerance can built up fairly quickly at higher doses. None of this is medical advice, I'm a doctor but I'm not your doctor, Sulbutiamine is a dietary supplement and is not suggested or approved as a treatment for any disorder by me or the FDA, can disturb (delay) sleep, can be habit forming - people can develop a tolerance, your mileage may vary... Never heard of it, but I’ll try it. I want to give the Guanfacene time first, but thank you. I’ll look into that. |
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Posted: 8/8/2023 1:23:31 PM EDT
[#18]
Nothing life-changing yet.
I sort of halfway think I am seeing some small changes, but need to be clear that such is often short-lived placebo effect. Feeling better because you think you're going to feel better. Hope springs eternal, and all that. |
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Posted: 8/17/2023 1:24:31 PM EDT
[#19]
Quote HistoryOriginally Posted By arowneragain: Nothing life-changing yet. I sort of halfway think I am seeing some small changes, but need to be clear that such is often short-lived placebo effect. Feeling better because you think you're going to feel better. Hope springs eternal, and all that. God Bless. |
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Posted: 8/20/2023 8:11:25 PM EDT
[#20]
Have you tries ivermectin?
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Posted: 8/21/2023 8:26:22 AM EDT
[#21]
Quote HistoryOriginally Posted By TheRealSundance: Have you tries ivermectin? Yes. Doesn’t seem to help. Others have reported success. |
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Posted: 8/21/2023 8:27:13 AM EDT
[#22]
I should be upping my dosage later this week.
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NC, USA
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Posted: 8/21/2023 11:49:48 AM EDT
[#23]
Have you tried any therapies with relation to the gut biome or mitochondrial health ?
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Posted: 8/21/2023 12:44:59 PM EDT
[#24]
Quote HistoryOriginally Posted By 9D1Alpha: Have you tried any therapies with relation to the gut biome or mitochondrial health ? I have taken probiotic supplements for reasons that had nothing to do with this. I have taken the same supplements in the past and they did seem to help with some stomach issues. But beyond that, no. |
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NC, USA
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Posted: 8/21/2023 1:35:37 PM EDT
[Last Edit: 9D1Alpha]
[#25]
Quote HistoryOriginally Posted By arowneragain: I have taken probiotic supplements for reasons that had nothing to do with this. I have taken the same supplements in the past and they did seem to help with some stomach issues. But beyond that, no. It may only be peripheral to your issue but the gut/mind connection is a pretty strong one . Covid/mrna has shown to have alot of adverse effects there . Home made sauerkraut has help my gut function quite a bit . High in k2 , vitc , probiotics. Plus cabbage is cheap haha. I mention the mitochondria too as covid does a lot of damage there . Obviously there are a lot of those in brain cells ...once they're damaged they put off a lot of ROS which cause inflammation. That could also trigger the autoimmune issues . * another is broccoli sprouts . The sulforaphane seems to act fast to cool my immune system when I'm having calcific-tendinitis...tennis elbow - frozen shoulder . I grow my own in a Mason jar for economy and efficacy . |
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USA
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Posted: 8/23/2023 12:22:27 PM EDT
[#26]
After reading this and other posts I know of got off easy with COVID.
Really hope you can find that thing or things that help arowneragain. Prayers up for you. |
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Posted: 9/12/2023 9:36:23 AM EDT
[#27]
Update:
I do see certain signs that the fog is lifting. Again, it's still too early to be sure. I am increasingly convinced that having Covid simply, somehow, took underlying ADHD symptoms and exacerbated them, somehow. I'll feel better, to some extent (the headache is still always here, but seems *slightly* less intense) then sit down to do a particularly hard thing at work ('hard' in this context means I have to really focus on it) and poof, I feel dumb again. But I get the tasks done, eventually. |
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WY, USA
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Posted: 9/12/2023 6:31:01 PM EDT
[#28]
I hope and pray that this helps you and many others injured by covid and the drugs fraudulently forced onto people.
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Posted: 9/19/2023 8:39:57 PM EDT
[#29]
Quote HistoryOriginally Posted By arowneragain: Update: I do see certain signs that the fog is lifting. Again, it's still too early to be sure. I am increasingly convinced that having Covid simply, somehow, took underlying ADHD symptoms and exacerbated them, somehow. I'll feel better, to some extent (the headache is still always here, but seems *slightly* less intense) then sit down to do a particularly hard thing at work ('hard' in this context means I have to really focus on it) and poof, I feel dumb again. But I get the tasks done, eventually. I am glad you are seeing some progress. More prayers for you tonight, promise. |
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Posted: 9/19/2023 9:05:40 PM EDT
[#30]
Quote HistoryOriginally Posted By Ascendent: I am glad you are seeing some progress. More prayers for you tonight, promise. It’s appreciated! Again, nothing definite, but there are positive signs. |
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NC, USA
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Posted: 9/29/2023 10:58:58 AM EDT
[#31]
 Long COVID: Diagnosis, Differentiation and Treatment with Dr. Bruce Patterson |
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CO, USA
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Posted: 10/8/2023 10:34:43 AM EDT
[#32]
ARowneragain - you might want to watch the videos in this link:
https://www.ar15.com/forums/General/Dr-Sherry-Tenpenny-on-the-Wuflu-jabs/199-2644955/ |
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AL, USA
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Posted: 10/29/2023 1:22:41 AM EDT
[#33]
@arowneragain
Dropped in this thread. Sharyl Atkkison has been doing pieces on a doctor out of Birmingham. You might want to investigate. This doc treats "long vaxx" and "long covid" sufferers. Apparently with good effect. He's even working on a clinic and working on a network.  The COVID Clots: A Full Measure Town Hall |
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Posted: 10/29/2023 8:29:01 AM EDT
[#34]
Thank you for that (those, actually - I've missed a couple of replies) videos.
Looking into all of them. FWIW, I am 110% convinced that either 1) long covid made my ADHD worse - from a level that didn't need treatment to a level that does, or 2) long covid, for me, is a stack of symptoms that are indistinguishable from ADHD. Take your pick. The current drug scheme (guanfacene/NAC) seems to help to some limited extent. Not a miracle cure, but Friday I was able, for the first time in a long time, to work my way through a day at work, and be productive, to an extent. It's not like I can magically and easily focus now, but if I really grit my teeth, I can do it. I just have to be very careful to guard against distractions. Headphones/music really help a lot. |
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Posted: 10/29/2023 8:49:35 AM EDT
[Last Edit: Mach]
[#35]
Quote HistoryOriginally Posted By arowneragain: Thank you for that (those, actually - I've missed a couple of replies) videos. Looking into all of them. FWIW, I am 110% convinced that either 1) long covid made my ADHD worse - from a level that didn't need treatment to a level that does, or 2) long covid, for me, is a stack of symptoms that are indistinguishable from ADHD. Take your pick. The current drug scheme (guanfacene/NAC) seems to help to some limited extent. Not a miracle cure, but Friday I was able, for the first time in a long time, to work my way through a day at work, and be productive, to an extent. It's not like I can magically and easily focus now, but if I really grit my teeth, I can do it. I just have to be very careful to guard against distractions. Headphones/music really help a lot. We probably have different things as I have brain fog and small fiber neuropathy, but I have been eating the Wahls Protocol. There is a book but also a website that has all the info in it. It is by an MD in the US that was diagnosed with MS and taking all the drugs and just getting worse, she did a bunch of nutrition research, mostly about systemic inflammation, and started eating much lower carb, not keto but paleo, meat, fish, fresh veggies, lots and lots of greens both salad and cooked, and different colored veggies ( phytonutrients ) and berries, sea weed, organ meats, increasing Omega 3 / Omega 6 ratio, fermented foods, sulfur foods, got out of the wheel chair she was in and made a remarkable recovery and essentially cured her MS. Been doing this for somewhat over a month, probably 2 months and have had significant improvement. If I stray off, it all starts coming back. I get back to serious, and it mostly goes away. Don't know if I mentioned it before or not but 20 mg of viagra 2 to 3 times a day, increasing blood flow and dilating blood vessels combined with taking a bunch of supplements at the same time to get them in the blood and delivered to places better with the viagra has also made a difference, it makes an immediate and long term difference, best I can tell. It sucks sticking to this diet, but it sucks worse being in pain all the time, not sleeping, and being dumb with no attention span. Lots of info all over the net. maybe it can help you. https://www.verywellhealth.com/reasons-to-try-the-wahls-protocol-for-ms-5218077 |
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NC, USA
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Posted: 10/29/2023 1:11:23 PM EDT
[#36]
Quote HistoryOriginally Posted By Mach: We probably have different things as I have brain fog and small fiber neuropathy, but I have been eating the Wahls Protocol. There is a book but also a website that has all the info in it. It is by an MD in the US that was diagnosed with MS and taking all the drugs and just getting worse, she did a bunch of nutrition research, mostly about systemic inflammation, and started eating much lower carb, not keto but paleo, meat, fish, fresh veggies, lots and lots of greens both salad and cooked, and different colored veggies ( phytonutrients ) and berries, sea weed, organ meats, increasing Omega 3 / Omega 6 ratio, fermented foods, sulfur foods, got out of the wheel chair she was in and made a remarkable recovery and essentially cured her MS. Been doing this for somewhat over a month, probably 2 months and have had significant improvement. If I stray off, it all starts coming back. I get back to serious, and it mostly goes away. Don't know if I mentioned it before or not but 20 mg of viagra 2 to 3 times a day, increasing blood flow and dilating blood vessels combined with taking a bunch of supplements at the same time to get them in the blood and delivered to places better with the viagra has also made a difference, it makes an immediate and long term difference, best I can tell. It sucks sticking to this diet, but it sucks worse being in pain all the time, not sleeping, and being dumb with no attention span. Lots of info all over the net. maybe it can help you. https://www.verywellhealth.com/reasons-to-try-the-wahls-protocol-for-ms-5218077 Thanks for reminding me of Dr Wahl ;  AHS12 Terry Wahls, MD — Minding My Mitochondria Right down to the mitochondria |
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Posted: 11/1/2023 3:30:37 PM EDT
[#37]
I have heard the term brain fog so many times, I hit my google.
"Brain fog is characterized by confusion, forgetfulness, and a lack of focus and mental clarity. This can be caused by overworking, lack of sleep, stress, and spending too much time on the computer." |
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Posted: 11/2/2023 8:26:27 AM EDT
[#38]
Quote HistoryOriginally Posted By wildearp: I have heard the term brain fog so many times, I hit my google. "Brain fog is characterized by confusion, forgetfulness, and a lack of focus and mental clarity. This can be caused by overworking, lack of sleep, stress, and spending too much time on the computer." I have had the hot tub for 11 years. It has a light button to the right of the temp display and a jet button to the left of the jet button. Both are big a are labeled. When my brain fog was at it’s worse, I could not hit the proper button to turn the lights on or off, even when consciously making an effort to touch the proper button by concentrating on it before pushing it, I constantly turned on the jets instead of the lights, and vice versa. It was like my brain was wired backwards. No matter what I did, I got it wrong. That lasted roughly 2 years. I still have it today but significantly less. That is just one example of literally being dysfunctional. |
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CO, USA
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Posted: 11/2/2023 9:12:30 AM EDT
[Last Edit: vim]
[#39]
Not your symptoms, but I had a long-lasting problem after COVID, related to skin sensitivity and a permanent mild rash/bump thing that about drove me crazy. (I had had a fierce and lingering chest rash in the immediate aftermath, and lymph inflammation, swollen nipples, etc.) My father had passed after an autoimmune problem and severe neurological decline seemingly due IMO to the third rail for medical practitioners at the time: vaccine. The genetic proximity got me thinking hard about solutions.
Prescribed corticosteroid cream wasn't effective. I tried a bunch of things, swapped this in and that out, the supplement box got large. A couple months ago, I started a regimen of quercetin/bromelain, curcumin, and high dose C (3500mg split over the day). The problem I was having started to get better, and two night ago my wife told me my skin was much smoother and had definitely cleared up. |
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WY, USA
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Posted: 12/21/2023 12:20:48 AM EDT
[#40]
@Mach
@arowneragain Haven't heard from y'all for a while. How are you doing? |
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Posted: 12/21/2023 12:43:02 AM EDT
[Last Edit: FlashMan-7k]
[#41]
Quote HistoryOriginally Posted By arowneragain: Nothing life-changing yet. I sort of halfway think I am seeing some small changes, but need to be clear that such is often short-lived placebo effect. Feeling better because you think you're going to feel better. Hope springs eternal, and all that. Your SO and others who live with you would likely have a better chance of noticing the difference than you would, is my *guess.* ETA: Nice to see you got some good results. 
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Posted: 12/21/2023 1:06:21 AM EDT
[#42]
Quote HistoryOriginally Posted By darkd0r: @Mach @arowneragain Haven't heard from y'all for a while. How are you doing? It’s very difficult to say. My work has slowed down, due to reasons that have nothing to do with me personally, to such an extent that it’s impossible to say how I’d handle a full day at work right now. I’m in the process of trying to start a side business to leverage what I do now but in a way that gets me out of the house and away from a desk. I still have the headache nonstop. Still mild, and I still think the guanfacene/NAC may help with that. But I don’t think the ADHD-ish symptoms have changed one bit. I’ve noticed that I have difficulty even sitting in the woods deer hunting. Or sticking to an enjoyable hobby for more than an hour. *shrug* I genuinely appreciate you asking and wish I could give a better report. Suffice to say there’s been no miraculous healing. |
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Posted: 12/21/2023 1:24:09 AM EDT
[Last Edit: FlashMan-7k]
[#43]
Quote HistoryOriginally Posted By arowneragain: It’s very difficult to say. My work has slowed down, due to reasons that have nothing to do with me personally, to such an extent that it’s impossible to say how I’d handle a full day at work right now. I’m in the process of trying to start a side business to leverage what I do now but in a way that gets me out of the house and away from a desk. I still have the headache nonstop. Still mild, and I still think the guanfacene/NAC may help with that. But I don’t think the ADHD-ish symptoms have changed one bit. I’ve noticed that I have difficulty even sitting in the woods deer hunting. Or sticking to an enjoyable hobby for more than an hour. *shrug* I genuinely appreciate you asking and wish I could give a better report. Suffice to say there’s been no miraculous healing. Quote HistoryOriginally Posted By arowneragain: Originally Posted By darkd0r: @Mach @arowneragain Haven't heard from y'all for a while. How are you doing? It’s very difficult to say. My work has slowed down, due to reasons that have nothing to do with me personally, to such an extent that it’s impossible to say how I’d handle a full day at work right now. I’m in the process of trying to start a side business to leverage what I do now but in a way that gets me out of the house and away from a desk. I still have the headache nonstop. Still mild, and I still think the guanfacene/NAC may help with that. But I don’t think the ADHD-ish symptoms have changed one bit. I’ve noticed that I have difficulty even sitting in the woods deer hunting. Or sticking to an enjoyable hobby for more than an hour. *shrug* I genuinely appreciate you asking and wish I could give a better report. Suffice to say there’s been no miraculous healing. I divert what's left of my ADHD with a pair of axil ghost stryke 2s bluetooth connected to my audio player that's loaded to the gills with audiobooks, lectures, podcasts ... Helps me redeem the time. My player has physical stop/ffw/play buttons, so I can stop and replay when I get distracted without having to look at it. |
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WY, USA
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Posted: 12/21/2023 5:54:34 AM EDT
[#44]
Quote HistoryOriginally Posted By arowneragain: It’s very difficult to say. My work has slowed down, due to reasons that have nothing to do with me personally, to such an extent that it’s impossible to say how I’d handle a full day at work right now. I’m in the process of trying to start a side business to leverage what I do now but in a way that gets me out of the house and away from a desk. I still have the headache nonstop. Still mild, and I still think the guanfacene/NAC may help with that. But I don’t think the ADHD-ish symptoms have changed one bit. I’ve noticed that I have difficulty even sitting in the woods deer hunting. Or sticking to an enjoyable hobby for more than an hour. *shrug* I genuinely appreciate you asking and wish I could give a better report. Suffice to say there’s been no miraculous healing. Thanks for the update. Sorry that progress is not better. Sometimes just getting through the day is a minor triumph. We're pulling for you. |
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Posted: 12/21/2023 10:38:14 AM EDT
[#45]
Quote HistoryOriginally 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. |
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Posted: 12/21/2023 3:10:59 PM EDT
[#46]
Quote HistoryOriginally Posted By FlashMan-7k: I divert what's left of my ADHD with a pair of axil ghost stryke 2s bluetooth connected to my audio player that's loaded to the gills with audiobooks, lectures, podcasts ... Helps me redeem the time. My player has physical stop/ffw/play buttons, so I can stop and replay when I get distracted without having to look at it. I can listen to music as background noise and it sometimes helps. I absolutely cannot listen to music I really like, or lectures or sermons or podcasts, while working. I’ll stop working and just listen. |
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Posted: 12/21/2023 6:13:45 PM EDT
[#47]
Quote HistoryOriginally Posted By arowneragain: I can listen to music as background noise and it sometimes helps. I absolutely cannot listen to music I really like, or lectures or sermons or podcasts, while working. I’ll stop working and just listen. I understand completely. |
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NC, USA
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Posted: 12/27/2023 7:28:50 PM EDT
[Last Edit: 9D1Alpha]
[#48]
Quote HistoryOriginally Posted By Mach: 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. Quote HistoryOriginally 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.  Terry Wahls, MD: Updates on Dietary Research: February 2023 * besides "The Wahls Protocol " I believe she also has a book or video " minding my mitochondria ". |
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Posted: 12/27/2023 7:44:41 PM EDT
[#49]
Quote HistoryOriginally Posted By 9D1Alpha: 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 ". Quote HistoryOriginally 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. |
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NC, USA
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Posted: 12/28/2023 7:38:02 AM EDT
[#50]
Quote HistoryOriginally Posted By Mach: It apparently helps anything inflammation related, which includes all of the above. Quote HistoryOriginally 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. |
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