Brain damage/dysfunction and substances that give near remission

[knackers323]

I think there are many causes of fatigue even within the one person, this is why i think sometimes something will work and the next day it doesnt

Its very debatable if neurological symptoms are occurring due to structures being broken or not. Many people report feeling 100% normal lasting from hours to days to weeks, so maybe in a percentage of cfsers these issues arent from something being broken in the brain, its possible that outside issues are causing the neurological issues.

One example of something that can cause the fatigue and neurological issues is the actual immune system even if an active infection is going on. eg Many people feel terrible from the flu not just because of the flu virus itself but from the cytokines being produced from the immune system trying to fight the infection. I think this is why some people can feel better on high dose prednisone or maybe one of the newer autoimmune/anti inflammatory drugs like the tnf blocker enbrel. But its only treating apart of whats causing the fatigue which is the immune system itself, now if someone has an active infection then using these drugs to turn down the effects of the immune system can allow infections to thrive as we now dont have our immune system fighting the infection.

Dammed if we do and dammed if we dont sometimes.

What is the theory behind the high dose prednisone working? I got a fair bit of relief from using this?

I have also been thinking lately about the idea that cfs could be an autoimmune problem, well have many people tried immunosuppressants and anti inflamitorys? What did they find?

 

[heapsreal]

What is the theory behind the high dose prednisone working? I got a fair bit of relief from using this?

I have also been thinking lately about the idea that cfs could be an autoimmune problem, well have many people tried immunosuppressants and anti inflamitorys? What did they find?

High dose prednisone which is more then normal replacement dose would have immune supressing effects which would turn down inflammatory cytokines but in saying this if theres active infections then they could possibly run wild, or inactive infections could become active after supressing the immune system. High doses for short term treatment for relapses is common in inflammatory and auto immune disorders. One would really want to rule out any active infections first??

Anti inflammatories like celebrex or mobic though are very different to steroids like prednisone and dont have the immune supressing effects. I did hear there was one cfs doc who was using celebrex with antivirals and having good success but i cant recall who the doc was or who it was from here who told me??

Have u had cortisol levels tested, u may find low doses or replacement doses of hydrocortisone might be helpful. You would also want good levels of dhea to balance cortisol and has also been shown to be helpful in auto immune disorders and can help lower certain inflammatory cytokines??

 

[Fogbuster]

I have nothing useful to add to this conversation, but just wanted to say this sounds incredibly interesting!

 

[knackers323]

There was a dr jay goldstein who apparently got pretty decent results by treating patients with substances that effected the brain. One by one until he found something that worked or ran out of ideas. He wrote a book called betrayal by the brain.

One of his ideas was nitric oxide and I've heard it could bring about instant relief. Anyone tried this? I would be the test dummy if anyone knows where to get it?

 

[knackers323]

There was a dr jay goldstein who apparently got pretty decent results by treating patients with substances that effected the brain. One by one until he found something that worked or ran out of ideas. He wrote a book called betrayal by the brain.

One of his ideas was nitro glycerine and I've heard it could bring about instant relief. Anyone tried this? I would be the test dummy if anyone knows where to get it?

 

[Sushi]

There was a dr jay goldstein who apparently got pretty decent results by treating patients with substances that effected the brain. One by one until he found something that worked or ran out of ideas. He wrote a book called betrayal by the brain.

One of his ideas was nitric oxide and I've heard it could bring about instant relief. Anyone tried this? I would be the test dummy if anyone knows where to get it?

Dr. Julian Stewart has researched nitric oxide and autonomic dysfunction. Apparently some of us have too much (not good) and some too little (also not good)!

Dr. Martin Pall is of the "too much" school.

http://www.nymc.edu/fhp/centers/syncope/J_Stewart.htm

Sushi

 

[Allyson]

dyscognition I have heard is the new medical term for brain fog


mine resolves entirely if I hydrate well and lie down for 2-4 days

then returns if I go upright for any length of time - sitting or standing

so I am guessing OI/POTS is the cause

upright MRIs may throw more light on that theory

both by showing reduced cerebral brain flow and increased blood pooling in the abdominal veins


ALly

 

[MeSci]

I think there are many causes of fatigue even within the one person, this is why i think sometimes something will work and the next day it doesnt

Its very debatable if neurological symptoms are occurring due to structures being broken or not. Many people report feeling 100% normal lasting from hours to days to weeks, so maybe in a percentage of cfsers these issues arent from something being broken in the brain, its possible that outside issues are causing the neurological issues.

One example of something that can cause the fatigue and neurological issues is the actual immune system even if an active infection is going on. eg Many people feel terrible from the flu not just because of the flu virus itself but from the cytokines being produced from the immune system trying to fight the infection. I think this is why some people can feel better on high dose prednisone or maybe one of the newer autoimmune/anti inflammatory drugs like the tnf blocker enbrel. But its only treating apart of whats causing the fatigue which is the immune system itself, now if someone has an active infection then using these drugs to turn down the effects of the immune system can allow infections to thrive as we now dont have our immune system fighting the infection.

Dammed if we do and dammed if we dont sometimes.

In my early days of ME I felt much better when I had a cold or flu, and theorised that it was because my immune system was distracted from attacking me for a change!

Now I just don't seem to get such infections at all.

 

[MeSci]

I plan to try Ayahuasca and Wachuma/San Pedro one day. These also have DMT and/or do similar things. I know they can help you go inside of yourself and, get spiritual insights and sometimes they give people health back.

Theorically the suboxone gave you a high,that would explain why you felt normal. Remember, healthy people exist in a state of bliss that is not actually fully graspable until you lose it.

http://www.suboxone.com/hcp/about_suboxone/mechanism_of_action.aspx

There is a site which is full of info about a wide range of psychoactive substances here.

 

[Beyond]

I know MeSci, I would love to submit one day a experience of mine to that awesome site.

 

[PNR2008]

@knackers323 I went to Goldstein in 1992 and he tried nitric oxide by way of nitroglycerin. Being a vasodialator it made me feel like a migraine was coming and the ceiling was coming down. He was disappointed it didn't work on me.

 

[Tristen]

http://forums.phoenixrising.me/inde...ome-of-my-neurological-me-cfs-symptoms.22751/

From my own extensive experience with opioid pain

Does anyone know if anyone is looking into brain or nervous system damage as a cause of our illness?

I ask this as I have heard of a few people that have taken DMT and their symptoms completely disappeared for a few hours.

I have also heard of a PWCFS take suboxone and it had the same effect. Desperate to feel well I had a very small amount of suboxone and the crushing fatigue completely went away. The next few hours were absolute heaven.

My body felt 100% and I was able to do push-ups. This would normally be completely out of the question. I was left with no PEM symptoms. This normally would have left me bed bound for a week.

So I wonder if it actually something in the brain that is driving the fatigue symptoms at least.

Anyone have any similar experiences, thoughts on this or know of any research into this?

http://forums.phoenixrising.me/inde...ome-of-my-neurological-me-cfs-symptoms.22751/

From my own experience with opioid pain relievers, I'm sure the resulting reduction of me/cfs symptoms is not due to any high/eurphora masking the symptoms. With these drugs, I get a level of wellness that I have not experienced since before becoming ill 20 years ago. Over the last 20 years, I've been through it all attempting to arrest this brutal disease and have found nothing that comes close to the effects I experience from these drugs. Regardless, for myself living on narcotics is not the answer......but the response to these drugs is of extreme significance.

My experience is the same that I get very significant reduction of symptoms, including being able to push myself far being normal limits without causing PEM. One could not prevent or mask that symptom by getting high. Besides, I did not need to take enough to even feel the drugs to cause the symptom reduction.

Surely our response to these drugs goes well beyond the binding of opiate receptors, and this response by some of us is extremely significant. It seems to me that this experience would allow for huge advances in understanding and treating this disease......that is if we can get it to the right researchers.

 

[lansbergen]

Seems a bit more complicated

http://www.fasebj.org/content/16/1/61.full#sec-
Gene profiling reveals unknown enhancing and suppressive actions of glucocorticoids on immune cells
First, at the gene cluster level, our study shows a bidirectional action of GC, which are both immunostimulatory and immunosuppressive at the same time even for the inflammation cluster (12)⇓. They seemed to prime and enhance the innate immune response while repressing part of the adaptive immune response in a resting state. This suggests that GC help clear antigens by stimulating cell trafficking, scavenger systems, and matrix metalloproteinases while they halt cellular immune responses by inhibiting antigen presentation and T cell activation.

High dose prednisone which is more then normal replacement dose would have immune supressing effects which would turn down inflammatory cytokines but in saying this if theres active infections then they could possibly run wild, or inactive infections could become active after supressing the immune system.

 

[Tristen]

Prednisone gives me partial relief for the first 1-2 days, then it's over....plus experience shows me that I may be in for a crash. Many drugs, such as Cortisol do the same. But, I do suspect we have an immune modulator already on market that will do a better job than Prednisone. And yes, one runs a serious risk of encouraging exacerbation of any known or unknown infections with these drugs. We must have a drug that will tweak the immune system just right, without causing this threat.

I recall not that long ago someone claiming full recovery with Methyltrexate (yikes, but not as dangerous as Rituximab). She had a website and had written a book. Sorry that I can't remember enough about her to provide a link.

My response to opioids must go well beyond suppression of a few pro-inflammitory cytokines. I've been on treatments that included regular immune testing and watched those values go from absurdly abnormal closer to normal, and did not experience that kind of relief. Some yes, but not a huge change, and not immediately. It is a neuro-immune connection, but significant responses I get from these drugs seems more to do with their effects on the CNS.

 

[Dufresne]

Baclofen has done me worlds of good. I actually go through my days now not feeling ill, despite my limitations. Unfortunately it doesn't touch my PEM. GBL, GHB, and opiates tend to offset this. I could actually lift weights to some degree on the first two without developing PEM. As the only real difference I can discern between GBL and Baclofen is the increased endorphins, I've concluded it's this that protects from post-exertional malaise.

Though I haven't touched it in years alcohol in large doses after several days has eliminated all of my ME/CFS symptoms. It differs from the other mood altering substances I've experimented with in that it actually seems to mess up the immune system sufficiently to stop the reaction to the causal pathogen or something that pathogen releases. Now I realize this is an incredibly bold statement and I wish I could tell you how I know it. And I understand this appears to contradict so much anecdotal evidence about alcohol intolerance in ME/CFS, but it wouldn't surprise me to learn others can experience this as well if they pushed through the intolerance. It takes about three days of hardcore consumption to reach the desired effects. Certainly not for the faint of heart, and I wouldn't recommend it.

 

[Dufresne]

In my early days of ME I felt much better when I had a cold or flu, and theorised that it was because my immune system was distracted from attacking me for a change!

Now I just don't seem to get such infections at all.

I've experienced the exact same thing. I contracted a rare flu a couple years ago, my first in 20 years, and felt totally healthy the next day.

 

[Tristen]

High-dose Baclofen has done me worlds of good. I actually go through my days now not feeling ill, despite my limitations. Unfortunately it doesn't touch my PEM. GBL, GHB, and opiates tend to offset this. I can actually lift weights to some degree on the first two without developing PEM. As the only real difference I can discern between GBL and Baclofen is the buzz or increased endorphins, I've concluded it's this that protects from post-exertional malaise.

Though I haven't touched it in years alcohol in large doses after several days has eliminated all of my ME/CFS symptoms. It differs from the other mood altering substances I've experimented with in that it actually seems to mess up the immune system sufficiently to stop the reaction to the causal pathogen or something that pathogen releases. Now I realize this is an incredibly bold statement and I wish I could tell you how I know it. And I understand this appears to contradict so much anecdotal evidence about alcohol intolerance in ME/CFS, but it wouldn't surprise me to learn others can experience this as well if they pushed through the intolerance. It takes about three days of hardcore consumption to reach the desired effects. Certainly not for the faint of heart, and I wouldn't recommend it.

Thanks for your input about the Baclofen. I have some on the shelf but have been reluctant to try it without more feedback on this. I may just give it a go.

Although not in the least an option for me, your response to alcohol is interesting.

On the issue of people feeling better with a cold/flu......I remember someone reporting years ago a complete reduction of their symptoms while they had poison oak (allergic reaction to the plant). Just one persons report, never heard it again. I'm not going to roll in the stuff to find out.

 

[Dufresne]

@Tristen It's worth a try. Note though that I didn't see any real benefits until getting up to 60-80 mg per day. At this dose my circadian rhythm normalizes and I start feeling great and the effects are sustainable.

 

[Beyond]

An imbalance in GABA and Glutamate is suspected in CFS. Especially if your sleep is shitty and you are tired but wired. I wouldn´t mind trying that Baclofen if I could. My urine tests showed I must be one of the most defficient GABA persons ever.

 

[MeSci]

I get a very strong sedative effect from the low dose of codeine in combined paracetamol and codeine tablets, and use it as part of my rotation of sleep meds. I haven't observed other effects but it would be hard to figure them out without doing some detailed analysis of my health diaries, and even then there would be a lot of confounding factors. One thing that may be relevant is opioids' effect on the gut.

For symptom relief I have found marijuana very effective, and alcohol seems to help to some extent, perhaps especially gin and tonic, which I had guessed might be due to the quinine - a muscle relaxant. Sedating antihistamines have helped me with muscle tension, anxiety, nausea and tremor, presumably through their anticholinergic effects. I rarely need them now except to aid sleep.

However, although opioids may help with gut problems for some people, I don't think that there are many drugs that address the underlying disease process on a sustained basis. I haven't found one, and I am instead focusing on (hopefully) longer-term solutions such as diet, supplements and pacing.