List of ME/CFS Recovery and Improvement Stories

[Hip]

I will report back if I ever hit remission.

Thanks for posting this.

Can you post the supplements that you took, and their doses? Joshua's protocols change frequently, so it would be best to spell out the protocol you are using.

The mods I believe are allowing discussion of Joshua's protocol among members trying it.

I don't tend to add improvement stories to this thread where patients have only had improvements for a few weeks or so, because as we all know, lots of ME/CFS treatments can be flash-in-the-pan, and do not last for the long term. But we can revisit your story in say 3 or 4 months time, and see if you are still maintaining the benefits.

 

[godlovesatrier]

Yep no problem. Current dosing is like this and it will remain like this now for the foreseeable as the experimentation phase is over really, I expect to get even better in the next 2 weeks. It I don't somethings not quite right.

**Note on Reishi: (life extension only - mass spectrometry has confirmed this is the only product out of a sample of 4 that had any high level triterpenes present)

Diet macros
140g protein
130g carbs
110g fat

I experimented a fair bit but feel that until I added everything together only then did it really start to show an improvement in my symptoms.

For some reason I can't format this post sorry...

 

[perrier]

Yep no problem. Current dosing is like this and it will remain like this now for the foreseeable as the experimentation phase is over really, I expect to get even better in the next 2 weeks. It I don't somethings not quite right.

Glycine --- 5g 4x a day
NAC --- 600mg 3x a day
Panthothenic acid --- 150mg 3x a day

Reishi extract (life extension only - mass spectrometry has confirmed this is the only product out of a sample of 4 that had any high level triterpenes present) --- 980mg 3x a day
Lion's mane --- 980mg 3x a day
R-Ala --- 250mg 3 x a day

Choline --- 150mg 3x a day
Oat bran --- 2 tsps 3x a day
EGCG --- 9am 125mg, 1.30pm 125mg, 5pm 75mg, 8pm 0mg (no dose)

Thorne b complex --- 1 per day
Vitamin E --- 400IU per day
Solar ray 24 strain Probiotic --- 1 per day (AM)

Diet macros
140g protein
130g carbs
110g fat

I experimented a fair bit but feel that until I added everything together only then did it really start to show an improvement in my symptoms.

For some reason I can't format this post sorry...

Thanks fo much. What is the difference between this protocol and the next one after? Thanks in advance.

 

[sb4]

@godlovesatrier Very good to hear about your improvements. Am I right in thinking you stopped your high dose thiamine experiment and replaced it with a regular dose of B Complex pills during your experiment with Joshs protocol? Or did you take the thiamine on top of the protocol?

 

[Martin aka paused||M.E.]

Thanks fo much. What is the difference between this protocol and the next one after? Thanks in advance.

Joshua always comes up with new ideas. Just lean back and relax.

 

[Boba]

Joshua always comes up with new ideas. Just lean back and relax.

As always

 

[godlovesatrier]

@godlovesatrier Very good to hear about your improvements. Am I right in thinking you stopped your high dose thiamine experiment and replaced it with a regular dose of B Complex pills during your experiment with Joshs protocol? Or did you take the thiamine on top of the protocol?

Yes I took it for the first 5 days I think and then I stopped. As the b complex had 100 and odd mg of thiamine in it anyway. I'm glad I did as the Protocol was superior to the benefits I was getting from high dose thiamine.

As for the protocol comments if you open 3.2 and 3.3 side by side you can make out the differences.

 

[perrier]

Yes I took it for the first 5 days I think and then I stopped. As the b complex had 100 and odd mg of thiamine in it anyway. I'm glad I did as the Protocol was superior to the benefits I was getting from high dose thiamine.

As for the protocol comments if you open 3.2 and 3.3 side by side you can make out the differences.

Thanks, but what made you choose 3.2 rather than 3.3; how did you decide, on what basis? what led you to choose over the other?

 

[godlovesatrier]

3.2 was the only one available when I started No problem.

 

[Wishful]

@Hip I've gone from almost housebound to being able to tolerate low levels of execercise,

Obviously, it was from the cumin you tried.

 

[godlovesatrier]

Lol. Must be

Was worth a shot

Sincerely hope these gains last and continue though. Nothing worse than climbing a mountain only to be knocked down it again.

 

[pamojja]

**Note on Reishi: (life extension only - mass spectrometry has confirmed this is the only product out of a sample of 4 that had any high level triterpenes present)

Which were the 3 other products tested? - And what was their lower level of triterpenes?

For some reason I can't format this post sorry...

You can use the </> Code formating found in the Formating bar above the editing field, to create properly spaced tables.

 

[godlovesatrier]

Not sure if this thread is the best place to post it and not sure I can actually share it but I will create a blog post and tag you in it.

 

[2Cor.12:19]

Add in cumin (Cuminum Cyminum) for blocking and then curing me of physically-induced PEM.

Spoiled coconut milk cured me of the type IV food sensitivity that started with my ME. I don't see that as a repeatable treatment though, and I haven't heard of anyone else developing type IV sensitivity from ME.

T2 (or iodine) prevented me from getting a level or two worse. Yes, another unique-to-me symptom and treatment, but how many of the other stories on your list are multiple successes?

@Wishful LDN has been nearly miraculous for my pain too. I’ve been on just 1 mg for 6 years and rarely even need an Aleive. I also take Turmeric. In addition to osteoarthritis and ME/CFS I have severe Axonal Polyneuropathy. My neurologist was surprised that I didn’t need prescription pain meds.

 

[godlovesatrier]

How long did it take to kick in @2Cor.12:19 ? My Mum hasn't long started LDN but she's saying it hasn't had much of an effect. Bizarrely where I over react to almost all drugs she doesn't seem to react to anything, even heavy painkillers, not sure what that is about.

 

[Sophiedw]

Great to hear of your success @godlovesatrier. Can I ask what the reishi is meant I achieve? I’ve not heard of these protocols. Must be out the loop.

 

[godlovesatrier]

Hey @Sophiedw I've done my best to explain it here: https://forums.phoenixrising.me/thr...ocol-is-progressing.84207/page-4#post-2347965

If you imagine the beta glucans are throwing a ball in the air at a baseball pitch, then the triterpenes are the bat knocking it out of the park. That's the idea anyway and triterpenes I am confident won't work on all pathogens, but it may not be important to get rid of all pathogens in ME...or it might and this could depend on all sorts of factors that we simply don't understand. Hopefully my post makes decent sense.

 

[Wishful]

How long did it take to kick in

For me, LDN completely blocked the neuropathic pains overnight. I can't remember whether I tested for minimum delay. It doesn't seem like an "expect six months before seeing an improvement" kind of drug.

 

[godlovesatrier]

Yeah I read that too, doesn't seem to have worked for my Mum, oh well was worth a try.

 

[2Cor.12:19]

How long did it take to kick in @2Cor.12:19 ? My Mum hasn't long started LDN but she's saying it hasn't had much of an effect. Bizarrely where I over react to almost all drugs she doesn't seem to react to anything, even heavy painkillers, not sure what that is about.

@godlovesatrier I wish I could remember - I know it wasn’t immediate and that I spent several months getting the dose right. I started with .5 mg and increased by .5 mg increments till I hit 4mg. That was too much ch so I backed down to 1. Probably was a few months for the best effect. Everyone responds differently though. Sorry it hasn’t worked for your mom.