What will the cure look like someday?

[Hopeful1976]

It's been a long slow learning process. I'll give you the "readers digest version".

I started, when I was mostly bedridden, by just slowly cutting back on junk food like cookies, ice cream, etc. Even just that gave me die-off symptoms from gut bacteria dying off, so I had to go very slowly.

Then I did the same thing with carbs. Then I added in supplements that helped to prevent PEM and flares from the bacterial die-off. Supps like BCAA's, coq10, Alpha lipoic acid, vitamin b-1 and worked my way up to fairly high doses of all of these.

Then I added in probiotics, anti-bacterial herbs and prebiotics. These are the things that have moved me from mostly bedridden to fairly mild.

It's not easy and it's not fast BUT I no longer suffer like I use to! I can also walk for half an hour without PEM and do 6-7 hours of physical activity a day. I can't walk for a half hour every day without PEM but the fact that I can do it at all, still amazes me!

I too have found benefit from most of what you write - what prebiotics do you use? I find that when I eat some sugar, it all goes wrong again. Thanks for your words

 

[knackers323]

@ryan31337 do you have more information on the researchers not being able to find CFS patients?

@Wishful what was the medication that gave you remission?

 

[ryan31337]

Hi @knackers323,

From memory (if you can trust it!), the reports re 1/3 rejected in first week were reported by Cort in an article. Apparently Dr Nath was due to discuss this and detail some of the rare diseases discovered at following events/conferences, though I don't recall which.

I'm less clear on the 50% claim, pretty sure it was from the chap that frequented this forum who had prior professional connections with NIH and subsequently was included in the trial - can't remember his name but I guess it'll be on here or the other site.

Cheers,
Ryan

 

[ryan31337]

It doesn't surprise me though. I remember a long consultation with an ME/CFS specialist a few years back when Rituximab was the talk of the town, he called it when he said it'd help 10% of the patients at best.

I was just as enthusiastic about RTX as everyone else at the time and wondered why he was being so negative. But he knew from decades of experience seeing patients that whilst there might be a sub-group with some new identifiable disease, the majority are just a heterogeneous collection of existing problems. The diagnostic criteria casts too wide a net.

 

[ljimbo423]

I too have found benefit from most of what you write - what prebiotics do you use?

For prebiotics I use partially hydrolyzed guar gum ("Healthy origins"), inulin, acacia and modified potato starch- (it has resistant starch in it, which is a good prebiotic).

I find that when I eat some sugar, it all goes wrong again.

Sugar and carbs make me much worse. The more I eat of them the worse I get.

About 3 years ago I was very low carb for a few months and was feeling awful. Ketosis makes me feel sick for some reason. I was still able to do about 3 hours a day of physical activity and rarely spent even a day in bed.

I decided that my gut wasn't the problem and started to eat a normal amount of carbs, about 200 grams a day, of very clean carbs. Within about a week or so, I was spending almost every day in bed again!!

I lowered my carbs again and within a few days to a week or so, I was back to my previous level of energy.

That was a HUGE wake-up call for me. Making it crystal clear the devastating effects of carbs on my health and ME/CFS!

Since then, whenever I start thinking about increasing my carbs, I remember what a diet with a "normal" amount of carbs in it did to me and that gets me back on the right track in a hurry!

Thanks for your words

Your welcome! Happy to help in any way I can.

 

[Wishful]

@Wishful what was the medication that gave you remission?

There were several. I think iodine was the first; it was the 'something' in a multivitamin'mineral tablet that made me think I was cured (for a few hours). It stopped working after a couple of doses. When I tried T2 years later, it too gave temporary remission the first couple of doses. Prednisone was next. Worked great the first two times, then never again. Cumin (Cuminum cyminum) was as effective as prednisone, but it too stopped working that way (now works well for me as PEM blocker).

I also, in the early stages of ME, had some temporary remissions without knowing what was responsible. It was amazing how quickly my body could switch states between ME and fully healthy again. ...and then back again.

 

[knackers323]

@Wishful things working and them stopping is common in CFS. I’ve experienced it myself many times.

To someone who hasn’t experienced this illness it would sound like we are making it up.

Are you aware of any other illnesses where this also happens or heard any decent theory’s on how it could be possible?

 

[Wishful]

I haven't heard of any similar illnesses with this response. My theory for it is that ME is a positive feedback loop involving some systems of the body, and the body adapts to keep us in that ME state. Think of it as something (mutation or whatever) that sets a thermostat in a room higher. We can try different ways (treatments) to cool the room down, such as opening a window or turning on a separate air conditioner, but the furnace keeps putting out extra heat to counteract those changes. We need a way to reach that thermostat and set it lower, but so far we don't know how (or even where it's located).

Who hid the ME thermostat?

 

[percyval577]

The thermostat allegory is pretty nice.

I think it to be geometrical. The brain might release different stuff for emphasizing this or that geometrical direction in nerve actions. This will be possible only in non-specific structures, so in non content-coding nerves, I would think that joy or sorrow are made up like so.

A main thing could be forwards and sidewards, at least this is for my case now my impression, and I now think that manganese codifies the sideward direction, and zinc the forward direction. All the pounding head aches I had would have been an exaggerated sideward nerve action, so pem.

My gum receded two times when I got better in course of lower manganese intake, maybe zinc was needed in the brain, for the now allowed and requested forward direction. Other stuff will be needed to help changes, and also to help different changes. Otherwise it´s a very simple theory.

 

[Rufous McKinney]

Who hid the ME thermostat?

Its in the homeostasis room

 

[soulflower]

I envision a white glowing dome with an iridescent quality. Inside is a scanner - like an open MRI. Everything is white and you notice the ceiling almost looks like it's made from crystals of shifting colors. A large donut like object will rotate around you and emit a bright, white- blue healing light. You will feel amazingly well rested almost to the point of confusion. You rest a bit longer once the 'donut' stops and then you are greeted with a fresh juiced drink of your choice. When you stand up, you are amazed at how well you feel. There is no bill presented, just a warm smile.

It's nice to dream sometimes.

 

[gbells]

I'm convinced beyond any doubt that in my lifetime we will see a discovery of the root cause for ME/Chronic Fatigue Syndrome/POTS/Dysautonomia... My question for everyone is: What do you imagine the cure will look like? I'm not talking about a temporary fix or pill that "masks" the problem, but something that treats the underlying cause. Will it be a brainwave treatment? A surgery to repair/replace a major organ (adrenals, thyroid, etc)? A psychological/mental health therapy that changes our chronic thought patterns? An anti-viral treatment? A vaccine? Etc?

I once thought that gene therapy might fix the viral infections but after reseaching it leaned that it couldn't because that can only be done to embryos. So the only cure I can think of would be to target the virally infected cells and kill them like chemotherapy does for cancer cells. It would be a long, painful process but should stop the disease and its symptoms.

 

[Rufous McKinney]

It's nice to dream sometimes.

Thats a wonderful cure! And not out of the question at all! Just need a bit more time....

 

[joannadm]

That will be the day we clean up toxic chemicals from our air, water, soil, built environment and consumer products...

 

[Frunobulax]

What do you imagine the cure will look like? I'm not talking about a temporary fix or pill that "masks" the problem, but something that treats the underlying cause.

Personalized treatment. Identify the root cause for the individuel patient, fix it.
I expect there to be a wide variety of root causes, so there will be different treatments.