Healing Midbrain Damage (chronic Fatigue Syndrome)

[cjm]

My impression of CFS is impaired inflammatory response where it's needed because of damage to the autonomic nervous system, which is similar to being overwhlemed by inflammation like PUFAs, since a person has difficulty with proper healing.

Two cents here to +1 the impaired inflammatory response... when I got the full dental reconstruction, i.e., almost 30 caps and 9 root canals, I barely even swelled up. Add to that two airplane flights to Cancun, and more than a few TSA body scans. I should have been bed-ridden for days if things were healing properly. Another example, I mountain bike on some really technical (rooty, hilly) trails (Appalachia ftw) and one time I took a bad line and ended up falling off and hitting my shin really hard on a rock. I swear I saw bone. But that wound just scar-tissued up in a few days. Probably needed stitches. It never hurt again and barely swelled up at all. I used to think it was a good thing. Just keep rockin' and rollin'. It's weird to "want" pain. I frustrate everyone I talk to about this. "You're fine!" Yeah, but... never mind. It's weekend time.

Also, I appreciate the thorough investigation you're doing. You're also full of really interesting thoughts, I found myself playing around with some of your post in my head today, for example:

Taking it easy (letting the midbrain heal and NOT using the prefrontal areas) seems conductive to healing.

+1! Good call! Easier in theory than practice. I wanted to take months off to be alone and do nothing but rest and listen to my body. Re-intregrating into society after a hiatus like that scared me but I daydreamed about solitary forest-living for years. Still do but it involves other people now.

 

[Recoen]

@Ivysaur @Korven @cjm @shine
I'm 25 and going off insurance soon. I'm getting EMG done, which would show the muscular fatigue, and I suggested orthostatic testing. My ESR (sedimentation rate) is on the low side, indicating my body has a low rate of inflammation, which is often found in people with CFS. A bunch of blood tests ruled out other causes.

My impression of CFS is impaired inflammatory response where it's needed because of damage to the autonomic nervous system, which is similar to being overwhlemed by inflammation like PUFAs, since a person has difficulty with proper healing.

I tried 1 capsule a day of TTFD and I can't say I noticed much. My vitamins were on the high side. B1 wasn't tested, but it likely was as well. It may help reduce lactic acid production, but I'd like to address the cause, which is damage to the autonomic system. Being 25 and having to skip showers to save energy is terrible.

@Kram

The neuronal healing study was interesting.

Effects of electromagnetic field (PEMF) exposure at different frequency and duration on the peripheral nerve regeneration: in vitro and in vivo study - PubMed

The guy talked about putting the PEMF device in different areas. I would put it about where my occipital bone is, or above my neck. While inflammation is low in CFS, it could help the midbrain and brainstem heal. Would you happen to know the best types for this application and explain the differences between them?

I have had multiple EMGs and nerve conduction studies. I had recurring rhabdomyolysis, CFS issues, POTs (OI), hEDS, MCAS issues, etc.

B1 and B2 have been crucial for my POTs. When I take them, it goes away. B vitamins, eating with RP’s thoughts in mind, tons of collagen and getting enough protein, etc have all been important for my muscle issues - I’m finally building muscle again and can lift 2-3 times per week! My MCAS went away after taking ancestral supplements kidney and thymus.

The EMG really won’t show much. If you have abnormal amplitudes or frequencies it indicates a problem. But really a muscle biopsy is what’s needed. All these things can be fixed with proper nutrition.

 

[orewashin]

@cjm @Recoem

I have normal wound healing. However, if autonomic regulation of blood flow is impaired, then blood doesn't flow to muscles while they're used, and doesn't flow to them afterward. This can induce fatigue and slow healing.

EMG would likely not show much but I notice neuropathy in my toes when I'm really physically fatigued. One paralytic episode occurred after taking TTFD, so maybe it's unrelated to mitochondrial functioning and B1/B2. Then again, I had CFS for a long time and the neuropathy is a recent development.

A muscle biopsy would be useful, at least to rule out other causes.

Autonomic testing would be useful in my case. Table tilt test in particular. The POTS thing is interesting. Heart rate increasing after standing up is a red flag for me, although I only notice this for a few seconds after standing up. I get faint, hear wooshing, my vision turns dark, my heart rate gets very fast for a few seconds and my pupils constrict during that time, then it suddenly slows to lower than normal for a few seconds. I don't know if I'd meet the criteria for POTS, since it measures heart rate for 40 minutes after standing up.

Also, cjm, how come you claim to have CFS and mountain bike? It depletes my energy to even ride a regular bike.

 

[Recoen]

@cjm @Recoem

I have normal wound healing. However, if autonomic regulation of blood flow is impaired, then blood doesn't flow to muscles while they're used, and doesn't flow to them afterward. This can induce fatigue and slow healing.

EMG would likely not show much but I notice neuropathy in my toes when I'm really physically fatigued. One paralytic episode occurred after taking TTFD, so maybe it's unrelated to mitochondrial functioning and B1/B2. Then again, I had CFS for a long time and the neuropathy is a recent development.

A muscle biopsy would be useful, at least to rule out other causes.

Autonomic testing would be useful in my case. Table tilt test in particular. The POTS thing is interesting. Heart rate increasing after standing up is a red flag for me, although I only notice this for a few seconds after standing up. I get faint, hear wooshing, my vision turns dark, my heart rate gets very fast for a few seconds and my pupils constrict during that time, then it suddenly slows to lower than normal for a few seconds. I don't know if I'd meet the criteria for POTS, since it measures heart rate for 40 minutes after standing up.

Also, cjm, how come you claim to have CFS and mountain bike? It depletes my energy to even ride a regular bike.

Have you had a nerve conduction study?

I had to slowly build up B1. And I only take ~20mg ttfd throughout the day. I also take one drop of energin in my belly button multiple times a day.

The symptoms you describe for your OI are exactly what I experience.

The good thing is these things can be healed :).

 

[Energizer]

What if CFS is just low thyroid function?

 

[orewashin]

Have you had a nerve conduction study?

I had to slowly build up B1. And I only take ~20mg ttfd throughout the day. I also take one drop of energin in my belly button multiple times a day.

The symptoms you describe for your OI are exactly what I experience.

The good thing is these things can be healed :).

I haven't. I didn't suspect CFS until recently. I thought it was psychiatric or thyroid-related until I started taking more T3 and realized that my body would lag behind my mind, and that it felt like a different type of issue.

My TSH was still 9 on a blood test. However, T3 doesn't seem to improve physical symptoms, only the mental ones like brain fog and insomnia. The post-exertional fatigue is still present. And although mental functioning is better, mental exertion also wears me out. I'm able to function mentally as long as I don't put forth any effort.

It's not too inspiring that I can "get better". I'm far from being functional enough to lead a productive life. Catching up from the lack of social development or from failing education would require even more effort than the average person puts forth.

I also have doubts about B1/B2 being very effective, although I'll try them in larger quantities. If I did Peaty things like restricting PUFAs for almost a decade, had higher than normal quantities of vitamins that were tested, and did many different things with no improvement, then why would a couple of vitamins make a difference?

Again, since CFS is related to disrupted midbrain/brainstem and autonomic functioning, I think the issue is that the body itself has trouble maintaining its own health.

Did your nerve conduction test show anything? I'll request a table tilt test, as well as a muscle biopsy. I don't know if I'll have a nerve conduction test at the same time as the EMG test, or if I'd be able to add it and have it done at the same time.

 

[Recoen]

I haven't. I didn't suspect CFS until recently. I thought it was psychiatric or thyroid-related until I started taking more T3 and realized that my body would lag behind my mind, and that it felt like a different type of issue.

My TSH was still 9 on a blood test. However, T3 doesn't seem to improve physical symptoms, only the mental ones like brain fog and insomnia. The post-exertional fatigue is still present. And although mental functioning is better, mental exertion also wears me out. I'm able to function mentally as long as I don't put forth any effort.

It's not too inspiring that I can "get better". I'm far from being functional enough to lead a productive life. Catching up from the lack of social development or from failing education would require even more effort than the average person puts forth.

I also have doubts about B1/B2 being very effective, although I'll try them in larger quantities. If I did Peaty things like restricting PUFAs for almost a decade, had higher than normal quantities of vitamins that were tested, and did many different things with no improvement, then why would a couple of vitamins make a difference?

Again, since CFS is related to disrupted midbrain/brainstem and autonomic functioning, I think the issue is that the body itself has trouble maintaining its own health.

Did your nerve conduction test show anything? I'll request a table tilt test, as well as a muscle biopsy. I don't know if I'll have a nerve conduction test at the same time as the EMG test, or if I'd be able to add it and have it done at the same time.

Yes my EMG showed abnormal amplitudes and my NCS showed demyelination - brain and spine MRI did too. I was set to have a muscle biopsy then covid so still waiting on that.

These things are all healing with nutrition and supplementation. Really I had to change my mindset and for me, finding God again did that.

Have you tried the TTFD form of B1? There’s tons of research on B1 healing ANS issues, helping with myelination, etc. I’m not saying B1 is the only thing. But it has been crucial for my healing.

 

[Korven]

I haven't. I didn't suspect CFS until recently. I thought it was psychiatric or thyroid-related until I started taking more T3 and realized that my body would lag behind my mind, and that it felt like a different type of issue.

My TSH was still 9 on a blood test. However, T3 doesn't seem to improve physical symptoms, only the mental ones like brain fog and insomnia. The post-exertional fatigue is still present. And although mental functioning is better, mental exertion also wears me out. I'm able to function mentally as long as I don't put forth any effort.

It's not too inspiring that I can "get better". I'm far from being functional enough to lead a productive life. Catching up from the lack of social development or from failing education would require even more effort than the average person puts forth.

I also have doubts about B1/B2 being very effective, although I'll try them in larger quantities. If I did Peaty things like restricting PUFAs for almost a decade, had higher than normal quantities of vitamins that were tested, and did many different things with no improvement, then why would a couple of vitamins make a difference?

Again, since CFS is related to disrupted midbrain/brainstem and autonomic functioning, I think the issue is that the body itself has trouble maintaining its own health.

Did your nerve conduction test show anything? I'll request a table tilt test, as well as a muscle biopsy. I don't know if I'll have a nerve conduction test at the same time as the EMG test, or if I'd be able to add it and have it done at the same time.

It's possible to eat a nutritionally adequate diet, and on paper not be deficient in thiamine, yet still have full blown beri-beri which looks a lot like dysautonomia. Any type of stress/trauma/infection depletes the body of thiamine and magnesium. Only way to fix this is to megadose the lacking nutrients and co-factors i.e thiamine, other B-vitamins, and magnesium.

I'm not saying that this will fix all your problems because I can't possibly guarantee that... maybe you're dealing with something entirely else that won't respond to thiamine therapy. However given that there are so many people fixing CFS, dysautonomia, POTS and other "mystery symptoms" with high dose allithiamine, I think it's worth giving a shoot given it's very safe. Here's some more reading You searched for dysautonomi - Hormones Matter

Personally it's been very helpful for my CFS symptoms. Last year I could barely go for a walk without getting PEM and now I'm doing a lot better. Have done lots of other things as well but since adding allithiamine I'm seeing further improvement.

Good luck man!

 

[Unknownuser]

Pregnenolone was the most effective substance I took for CFS. Especially when taken sublingually as micronized powder.

Same here. After years of no energy and cfs symptoms I took Dhea 25mg and pregnenolone 10mg under my tongue in December 2019. It was like I was reborn. I also have pfs from finasteride and it even healed my pfs for 4-5 days (libido raged). But went away fast. Still it helps me a lot with many symptoms like fatigue.

Now I stopped both for 5 days because I started hcg to heal pfs hopefully. The lack of energy starts to come back. I yawn all the day. Especially in social situations every half minute.

 

[orewashin]

@Korven
What if CFS is the stressor that depletes thiamine, and not thiamine deficiency that causes CFS? If aerobic metabolism is impaired in CFS, then thiamine is used up at a faster rate.

That being said, since CFS is correlated with disturbances in the midbrain/brainstem and thiamine improves the process of myelination, then thiamine would aid healing, even if a person doesn't have a deficiency.

Studies haven't shown damage that's consistent across groups of CFS patients in other brain regions and inferior connectivity is a feature of many mental illnesses, as well a lack of intelligence in general.

If you've already saturated your body with thiamine, then why is it that you're not completely cured? It only takes months to fix demyelination from thiamine deficiency. There's something more specific at play.

Yes my EMG showed abnormal amplitudes and my NCS showed demyelination - brain and spine MRI did too. I was set to have a muscle biopsy then covid so still waiting on that.

These things are all healing with nutrition and supplementation. Really I had to change my mindset and for me, finding God again did that.

Have you tried the TTFD form of B1? There’s tons of research on B1 healing ANS issues, helping with myelination, etc. I’m not saying B1 is the only thing. But it has been crucial for my healing.

I did try TTFD. I took another look at info on it. I was paralyzed after taking TTFD, and felt more fatigued after taking it at other times, which I thought was a coincidence, but it was probably the so-called "paradoxical reaction". At least it's doing something.

I think CFS is the cause and not the effect of demyelination, save for the specific possible demyelination in the midbrain/brainstem. I only had peripheral neuropathy in my toes for the past year, and it's not noticeable most of the time. It also didn't occur alongside a worsening of CFS symptoms, although the tingling was more noticeable during the paralysis from TTFD.

 

[orewashin]

Same here. After years of no energy and cfs symptoms I took Dhea 25mg and pregnenolone 10mg under my tongue in December 2019. It was like I was reborn. I also have pfs from finasteride and it even healed my pfs for 4-5 days (libido raged). But went away fast. Still it helps me a lot with many symptoms like fatigue.

Now I stopped both for 5 days because I started hcg to heal pfs hopefully. The lack of energy starts to come back. I yawn all the day. Especially in social situations every half minute.

Why did you stop taking DHEA and pregnenolone to take hcg? Also, while I'm aware that pregnenolone aids in myelination, I'm unaware of DHEA having this effect. Also, RP said that it can aromatize. I wonder if the pro-libido effect is from DHEA, rather than pregnenolone, which doesn't seem to affect libido.

 

[Recoen]

@Korven
What if CFS is the stressor that depletes thiamine, and not thiamine deficiency that causes CFS? If aerobic metabolism is impaired in CFS, then thiamine is used up at a faster rate.

That being said, since CFS is correlated with disturbances in the midbrain/brainstem and thiamine improves the process of myelination, then thiamine would aid healing, even if a person doesn't have a deficiency.

Studies haven't shown damage that's consistent across groups of CFS patients in other brain regions and inferior connectivity is a feature of many mental illnesses, as well a lack of intelligence in general.

If you've already saturated your body with thiamine, then why is it that you're not completely cured? It only takes months to fix demyelination from thiamine deficiency. There's something more specific at play.


I did try TTFD. I took another look at info on it. I was paralyzed after taking TTFD, and felt more fatigued after taking it at other times, which I thought was a coincidence, but it was probably the so-called "paradoxical reaction". At least it's doing something.

I think CFS is the cause and not the effect of demyelination, save for the specific possible demyelination in the midbrain/brainstem. I only had peripheral neuropathy in my toes for the past year, and it's not noticeable most of the time. It also didn't occur alongside a worsening of CFS symptoms, although the tingling was more noticeable during the paralysis from TTFD.

I had to start really low and build slow with ttfd. It sounds like you went too quickly.

There are many who need high dose biotin and thiamine daily. Susan Owens of the TLO group is one example. She’s also in contact with a researcher who is showing B1 has many more indirect effects than the direct ones (PDH, etc). There are also some in the understanding mitochondrial deficiencies group with demyelination who need years and not months to recover. I am one of them. My NCS are improving every year but it’s a slow process.

I used to sleep 18+h per day and would only wake up to eat and was exhausted, had to use a cane, etc

Have you had a brain MRI showing the midbrain damage? Will you share what the radiologist and neurologists said?

 

[Unknownuser]

Why did you stop taking DHEA and pregnenolone to take hcg? Also, while I'm aware that pregnenolone aids in myelination, I'm unaware of DHEA having this effect. Also, RP said that it can aromatize. I wonder if the pro-libido effect is from DHEA, rather than pregnenolone, which doesn't seem to affect libido.

I want a reset of hormone system and dont want to take other factors that might interrupt. I dont know about if preg or dhea did the libido boost because people with pfs lack of gaba and allopregnenolone. It's said gaba boosts libido in the hcg thread. Its probably true, when I am relaxed, my libido is way better. And the last few weeks am not able to relax. Never, not even in bed. Wich reflects on my libido, wich was zero the last few weeks.

When I am able to relax by listening to chilling music, my libido gets also better. That's why pfs people report healing by meditation I guess. But as soon as the stress starts again, we crash. That's my experience at least.

I am trapped in my own mind and thoughts the last weeks and cant exit. No matter what I do. But when you let all worries go and relax, everything gets so much better.

 

[Korven]

I want a reset of hormone system and dont want to take other factors that might interrupt. I dont know about if preg or dhea did the libido boost because people with pfs lack of gaba and allopregnenolone. It's said gaba boosts libido in the hcg thread. Its probably true, when I am relaxed, my libido is way better. And the last few weeks am not able to relax. Never, not even in bed. Wich reflects on my libido, wich was zero the last few weeks.

When I am able to relax by listening to chilling music, my libido gets also better. That's why pfs people report healing by meditation I guess. But as soon as the stress starts again, we crash. That's my experience at least.

I am trapped in my own mind and thoughts the last weeks and cant exit. No matter what I do. But when you let all worries go and relax, everything gets so much better.

I also tend to get stuck in my own mind quite a bit, which I honestly believe to be the greatest stressor of all as it so often is a 24/7 thing with no pause. You can make yourself very sick just from excessive thinking. I can wholeheartedly recommend all of the videos on this channel, they are great for letting go of whatever it is that's worrying you:



(Sorry if a bit off topic)

 

[orewashin]

I had to start really low and build slow with ttfd. It sounds like you went too quickly.

There are many who need high dose biotin and thiamine daily. Susan Owens of the TLO group is one example. She’s also in contact with a researcher who is showing B1 has many more indirect effects than the direct ones (PDH, etc). There are also some in the understanding mitochondrial deficiencies group with demyelination who need years and not months to recover. I am one of them. My NCS are improving every year but it’s a slow process.

I used to sleep 18+h per day and would only wake up to eat and was exhausted, had to use a cane, etc

Have you had a brain MRI showing the midbrain damage? Will you share what the radiologist and neurologists said?

I had a brain MRI back in middle school after I fainted from orthostatic hypotension and hit my head, although I have no idea if they only recorded the back of my head which I hit, or the whole brain. I'll inquire about it.

Keep in mind, the deep brain regressions found in CFS are nonspecific, inconsistent, and involve different regions involved in autonomic control. I don't think I have a justifiable reason to get an MRI. To my understanding, CFS can't be diagnosed by MRI at this point.

 

[gaze]

I also had/have similar symptoms. I got a blood test and had elevated wbc with normal inflammatory markers so my doctor said it’s not COVID since inflammatory markers would be elevated. Definitely some sort of chronic infection maybe a covid long haul although I never had real covid symptoms besides some weight loss. Might try @lvysaur suggestion and ask for some low dose antibiotics

 

[orewashin]

I also had/have similar symptoms. I got a blood test and had elevated wbc with normal inflammatory markers so my doctor said it’s not COVID since inflammatory markers would be elevated. Definitely some sort of chronic infection maybe a covid long haul although I never had real covid symptoms besides some weight loss. Might try @lvysaur suggestion and ask for some low dose antibiotics

I'm not sure what symptoms you're referring to. This thread is geared mostly toward people who have had CFS for years, rather than months. I wonder where the term "long-hauler" came from. I think it's just a normal post-viral malaise from what I can tell.

 

[gaze]

I'm not sure what symptoms you're referring to. This thread is geared mostly toward people who have had CFS for years, rather than months. I wonder where the term "long-hauler" came from. I think it's just a normal post-viral malaise from what I can tell.

Ah I see. My bad. I was responding more so to lvysaurs comment which was referring to shorter term symptoms

 

[Gone Peating]

If you’re suffering from fatigue and muscle issues it could be lyme disease.

Worth checking out Stephen Buehner’s book and website. He lists his protocol for treating lyme for free. And even if it isn’t lyme I think his suggestions would still help with your symptoms. Only one or two of the herbs he recommends is directly for destroying lyme. The others are to help the muscles, nerves and tissues recover

 

[orewashin]

If you’re suffering from fatigue and muscle issues it could be lyme disease.

Worth checking out Stephen Buehner’s book and website. He lists his protocol for treating lyme for free. And even if it isn’t lyme I think his suggestions would still help with your symptoms. Only one or two of the herbs he recommends is directly for destroying lyme. The others are to help the muscles, nerves and tissues recover

Lyme was one of the first things that I was tested for, and it was negative. I think it's routinely checked for in the case of ruling out causes of CFS-like symptoms. What does he recommend for nerve healing, and does it have scientific basis?