• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Can the nervous system heal/reverse damage

notmyself

Senior Member
Messages
364
is it possible? does nervous system have the ability to regenerate like tissue for example? i didint find anything conclusive about that,there is some research about neuroplasticity,brain ability to form new neuronal pathways..can things like POTS/OI be reveased somehow?
 

Jesse2233

Senior Member
Messages
1,942
Location
Southern California
Yes to all of the above

Things that can help repair nerves / restore brain function

- proper methylation
- hyperbaric oxygen
- neurofeedback
- certain antidepressants / nootropics (used judiciously)
- light appropriate exercise
- treating pathogens, autoantibodies, toxins, and sources of inflammation that affect the CNS

Things that help POTS/OI

- IVIG / plasmapheresis / immunosuppression for autoimmune cases
- antiviral / antibiotic for chronic infectious cases
- prescription meds / supplements for symptomatic relief (beta blockers, adrenergic agonists, funny channel antagonists, aldosterone boosters, fluid loading, mineral supplementation)
 

pattismith

Senior Member
Messages
3,941
is it possible? does nervous system have the ability to regenerate like tissue for example? i didint find anything conclusive about that,there is some research about neuroplasticity,brain ability to form new neuronal pathways..can things like POTS/OI be reveased somehow?

I am curently wondering the same.

Being ill for 35 years, and very ill for 15 years, have I a chance that my nerves and brain can heal?

I know the process is slow, especially when aging comes to add it's effects, but the first results I had with my eyes improving gives me much hope for the future.

My mood is still very difficult to stabilized, but it was always bad and low before I started my big supplementing program, so it is already a good result. When I am in a bad day, feeling low and giving up, I know I have to keep going and that the next day can be better. :thumbsup:
 

Jeckylberry

Senior Member
Messages
127
Location
Queensland, Australia
Neurons are single cells that don't divide like the cells in tissue do. Clearly they do recover if not too badly damaged, and they can repair and rejoin. OI and POTS are caused by problems in the sympathetic and autonomic nervous systems that affect the circulatory, endocrine and lymphatic systems and the way each communicates with the other and this is still a mystery. To me, curing POTS is not a matter of reparing just one system because of all the feedback that happens. If all involved systems are restored to some extent the sufferer will feel better. Many of my POTS associates have tried many remedies and still do not get relief except through the usual channels of Florinef, Midodrine, beta blockers and saline to keep up blood volume and other things mentioned by @Jesse2233, and these are all remedies that, combined, work on different systems and have different results depending on the person.
 

ash0787

Senior Member
Messages
308
why do you think its nerve damage ? if you have consistent severe CFS then you will probably also have consistent pots, because when I had pots it always coincided with being 'bedbound', so relatively very ill, but it recovered in sync with other symptoms, even seen it come on and go within 1 day, so in that case its probably caused by some sort of signalling chemical and not nerve system, or a chemical disruption to the nerve system.

I heard that nerve can regenerate yes, I would look at chemotherapy patients for more information, they get this thing called peripheral neuropathy.
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
one blogger online had her POTS caused by autoimmune illness (Sjorgen's )affecting her nerves. With IVIG she recovered i think. this website whatpotsreallyis.net has interesting info re POTS caused by brain trauma and use of neuroplasticity to help that.
 

andyguitar

Moderator
Messages
6,604
Location
South east England
Yep brain can form new pathways. Spent 7 months visiting a stroke patient. Almost total loss of everything. Paralysed on one side, could'nt read or write or speak properly. Got to know the specialist staff at the hospital fairly well who said that the brain has 'spare capacity' so when it gets damaged it takes over the functions of the brain thet are 'lost' through damage. Expect you want to know how the patient got on. Every thing came back apart from a slight problem with swallowing reflex and some slowness of walking. Remarkable.
 

Hip

Senior Member
Messages
17,858
is it possible? does nervous system have the ability to regenerate like tissue for example? i didint find anything conclusive about that,there is some research about neuroplasticity,brain ability to form new neuronal pathways..can things like POTS/OI be reveased somehow?

There is not really much evidence of damage in the brain and nervous system of ME/CFS or POTS patients. That's why ME/CFS is considered a functional disorder (where something is thought to be amiss with the functioning of the body), rather than a structural disorder (where there is damage and lesions in the structures of the body).
 
Last edited:

notmyself

Senior Member
Messages
364
There is not really much evidence of damage in the brain and nervous system of ME/CFS or POTS patients. That's why ME/CFS is considered a functional disorder (where something is thought to be amiss with the functioning of the body), rather than a structural disorder (where there is damage and lesions in the structures of the body).
if that's the case, why is recovery so hard to achieve? or imposible like some people think
 

Seven7

Seven
Messages
3,444
Location
USA
I think so, you have people like me where one day I can pass out 5 times an hour, then go months without episodes. Also I go into remissions.
When I was growing up my mom was in the floor mostly, she Also suffer from some bizarre pain thing ( I believe she had fibromyalgia) but never diagnosed. And she recovered 100% ( spontaneous).
 

Hip

Senior Member
Messages
17,858
if that's the case, why is recovery so hard to achieve? or imposible like some people think

Why should a functional disorder be any easier to cure than a structural disorder?

If for example the dysfunction were caused by a chronic intracellular viral infection throwing a spanner in the working of the body, as many ME/CFS specialist doctors believe, then you are not going to fix the dysfunction until you get rid of that intracellular virus (which is hard given the current range of antivirals with limited efficacy).

What we need are some really good antivirals, like those new hepatitis C antivirals that actually fully eliminate the virus from the body. Hepatitis C is an ME/CFS-like disease caused by the hepatitis C virus forming a chronic infection in the liver, but with these new drugs, many patients can be fully cured now.
 

notmyself

Senior Member
Messages
364
I think so, you have people like me where one day I can pass out 5 times an hour, then go months without episodes. Also I go into remissions.
When I was growing up my mom was in the floor mostly, she Also suffer from some bizarre pain thing ( I believe she had fibromyalgia) but never diagnosed. And she recovered 100% ( spontaneous).
how long did she sufferred for?
 

notmyself

Senior Member
Messages
364
Why should a functional disorder be any easier to cure than a structural disorder?

If for example the dysfunction were caused by a chronic intracellular viral infection throwing a spanner in the working of the body, as many ME/CFS specialist doctors believe, then you are not going to fix the dysfunction until you get rid of that intracellular virus (which is hard given the current range of antivirals with limited efficacy).

What we need are some really good antivirals, like those new hepatitis C antivirals that actually fully eliminate the virus from the body. Hepatitis C is an ME/CFS-like disease caused by the hepatitis C virus forming a chronic infection in the liver, but with these new drugs, many patients can be fully cured now.
maybe the same type of antivirals can help many of us here...
 

Hip

Senior Member
Messages
17,858
maybe the same type of antivirals can help many of us here...

These new hepatitis C antivirals were investigated for their effects against enterovirus, the virus commonly found in ME/CFS, but unfortunately it was found they have no antiviral action against enterovirus.

However, Dr John Chia uses oxymatrine, Epivir and more recently tenofovir to target enterovirus infections, and these do significantly help some ME/CFS patients.
 

Seven7

Seven
Messages
3,444
Location
USA
how long did she sufferred for?
That particular bout was the longest 10y that I remember. I think all my aunts ( most of them maternal) have some level of OI) so they think certain things are normal and I tell them nope!
Like me, if they suffer intense pain they pass out. Since I grew up seeing that I thought it was normal. So I just told my aunt not long ago, no aunt that is not normal. It is normal in our family but that does not happen to regular plp lol!
 

notmyself

Senior Member
Messages
364
t
These new hepatitis C antivirals were investigated for their effects against enterovirus, the virus commonly found in ME/CFS, but unfortunately it was found they have no antiviral action against enterovirus.

However, Dr John Chia uses oxymatrine, Epivir and more recently tenofovir to target enterovirus infections, and these do significantly help some ME/CFS patients.
if a virus is causing all this,i am very optimistic that treatment will come..i just hope is a virus and not something else..even hiv is manageble this days, almost every infectios disease have efective treatment these days,,