CFS Gone for Now. Will it last.....

[Diwi9]

When I started L-Arginine, I was taking 5000mg 2 x's per day; my mixture also contains 200mg L-Citruline. I've reduced the amount by half now. I'm female, which may account for different needs. I also take 500 mg L-Lysine.

 

[AdamS]

@Diwi9 How much of an effect did Arginine/Citrulline have for you in terms of functioning? I see that in the video Fluge & Mella say that people usually build a tolerance to it which is unfortunate!

 

[Diwi9]

@Diwi9 How much of an effect did Arginine/Citrulline have for you in terms of functioning? I see that in the video Fluge & Mella say that people usually build a tolerance to it which is unfortunate!

I had been in a pretty bad decline when I started it, very low functioning (~20 hours in bed per day). I started the Arginine and was able to ride my horse and do some chores at the barn...I felt great, but of course overdid it and ended up with PEM. My current baseline is above that at the moment. It's taken many weeks, and lots of rest, but I have raised my baseline significantly on my protocol. I require myself to rest daily now, even if I still have energy. It's allowed me to save up energy if I want to do something with people once or twice per week. Brain fog is still a nemesis, but NAC and L-Orthinine seem to help. Also, I've been on LDN for a number of weeks now, very helpful.

 

[belize44]

This is so exciting! I hope that this is the start of a better life for you, gregh286!

 

[gregh286]

@Diwi9 How much of an effect did Arginine/Citrulline have for you in terms of functioning? I see that in the video Fluge & Mella say that people usually build a tolerance to it which is unfortunate!

Yes that's why need to keep switching. Glutamine.....TMG....arginine......carnitine.......protein shakes.
Rotate and rotate.
Another decent trick in a crash is hitting fats hard. Like all out on coconut...avocado and nuts. Seems the body will use any fuel bar glucose.

 

[Diwi9]

@AdamS and @gregh286 - I would be remiss to not mention that I also feel that some of my improvement is also via a perspective shift. I am much more satisfied by doing less now. For example, I used to work two jobs, volunteer, active social life, and ride horses. Now, I have a good day if I communicate with friends, do some laundry, and feed and groom my horses...without crashing. To me, that is a productive day.

I still struggle with concentration, focus, and hyperacusis (although it is less severe). I would love to go back to work, but the mental fatigue has been more difficult to manage than my physical energy, which is incredibly frustrating. Still, a few weeks ago, I could barely string a sentence together on PR. My old posts are full of typos. Apparently not everyone with ME/CFS struggles with cognitive dysfunction. I understand what you mean about personality loss, Greg...on my worst days, the depersonalization is horrible.

Sorry if we've hijacked your thread, but discussions on improvement/recovery are so important. And, your prior posts have helped me, so I hope others are following and maybe have more to add. Unfortunately, not everyone with ME/CFS has the ability to move the dial with supplements and pacing.

 

[AdamS]

@Diwi9 Yeah a change in perspective is definitely a must for this illness. That has been the hardest part for me. It's great to hear that you are able to have some productive days. I haven't really found that balance yet, need to shift my expectations a bit maybe.

Mental fatigue was a huge issue for me but I haven't crashed in around 30-40 days and my focus/processing speed has improved a little as a result. It's still pretty bad though.

Yeah sorry for hijacking the thread @gregh286 thank you for always sharing your experiences of what has helped you. Your thread on No2 Black was particularly interesting.

 

[Marky90]

So stoked for u Gregh! Might try some of what you have been on

 

[Diwi9]

what is equlibrant??

@Johnskip - It's an oxymatrine-based supplement created by Dr. Chia, based on traditional Chinese medicine. Equilibrant

You can also buy plain oxymatrine.

 

[Jesse2233]

This is all very interesting

As it happens I'm seeing an amino acid specialist on Friday, and am slowly ramping up LDN and Equilibrant

@gregh286 do you think the aminos got your body / Kerb cycle to a certain place where you could better utilize the Equilibrant?

 

[gregh286]

This is all very interesting

As it happens I'm seeing an amino acid specialist on Friday, and am slowly ramping up LDN and Equilibrant

@gregh286 do you think the aminos got your body / Kerb cycle to a certain place where you could better utilize the Equilibrant?

It's possible Jesse that I improved overall amino status that took me from a 50 to an 80 on bells scale.
I was functioning really well until the latest addition.
But I was missing the immune part of this that took me up the extra 20%.
But with CFS we can crash very significantly from nowhere. A crash now is nothing. Just feels like a slightly tired day and passes within no time. It's very insignificant.
The bar is moved so much higher.

 

[Jesse2233]

It's possible Jesse that I improved overall amino status that took me from a 50 to an 80 on bells scale.
I was functioning really well until the latest addition.
But I was missing the immune part of this that took me up the extra 20%.
But with CFS we can crash very significantly from nowhere. A crash now is nothing. Just feels like a slightly tired day and passes within no time. It's very insignificant.
The bar is moved so much higher.

That's really great!

Would you say you're at 100 on Bell's scale now (able to exercise vigorously)?

And how long did it take you to see improvement from the aminos?

 

[gregh286]

That's really great!

Would you say you're at 100 on Bell's scale now (able to exercise vigorously)?

And how long did it take you to see improvement from the aminos?

I didn't try to exercise vigoursly yet. I play golf most days which is around 6 miles.plus 80 shots. No payback. Come home stay up late do same next day etc. Wake up fresh which as we know is quite elusive. 8 hours sleep and I'm good to go all over again. My body is waking me up now like normal.
If I'm not 100 must be 90+.
Hard to know what 100 is after a 5 year suffering.

Aminos only pull me from crashes....which takes around 6 hours to work. Don't need.them now cos I'm not crashing.

 

[gregh286]

This is all very interesting

As it happens I'm seeing an amino acid specialist on Friday, and am slowly ramping up LDN and Equilibrant

@gregh286 do you think the aminos got your body / Kerb cycle to a certain place where you could better utilize the Equilibrant?

I'm not convinced about ldn. I used it for a year. I think it might help endorphins or people with low esteem or depressive states. For pure metabolic ME it just might not cut it.
However we all differ.
Important factor in ME to remove stress....eat clean and try to kick start krebs.
For many a viral trigger or something sticks on autoimmune reponse. Important to try and identify trigger.

 

[gregh286]

So stoked for u Gregh! Might try some of what you have been on

Cheers marky90. Hope ur doing OK these days bud.

 

[Diwi9]

I'm not convinced about ldn. I used it for a year. I think it might help endorphins or people with low esteem or depressive states. For pure metabolic ME it just might not cut it.

Jarred Younger is studying LDN for it's effects on fatigue in ME/CFS. I'm looking forward to his findings. LDN is helping me, I'm not crashing like I used to and my brain fog is reduced. But, basically, it seems to knock down the severity...symptoms are still around, just reduced.

 

[Seven7]

I'm not convinced about ldn.

FOr me LDN raised my NK numbers. Better than anything else I have tried.
I have had a few remissions. Please take it easy, use this time for healing whatever is left. Do not go crazy. If you will try exercise, start slow and low. Look at it like rehab not like exercise.
Do not try new things or supplements, try to maintain what you are doing for a bit of time, I had stopped too soon before.
Make extra effort on sleep and rest periods (even if you don't need it) and Nutrition. Best of lucks and I am sure if you follow so, it will last.

I am no doctor this is from my remissions experiences.

 

[drob31]

It sounds like you jump started your immune system.

I know vitamin D is a big player and often overlooked which triggers 2000 genes.

The question is do people need to mega dose way higher than they normally are?

It's also needed to activate GcMAF.

The equilibrant treats Coxsackievirus B and echovirus infections, and maybe some other. So vitamin D with hypothetical activation of GcMAF plus equilibrant would be like putting your immune system on steroids. So it would maybe wipe all that stuff out.

As far as the aminos, I wonder if that's a malabsorption issue.

 

[drob31]

Yes that's why need to keep switching. Glutamine.....TMG....arginine......carnitine.......protein shakes.
Rotate and rotate.
Another decent trick in a crash is hitting fats hard. Like all out on coconut...avocado and nuts. Seems the body will use any fuel bar glucose.

High levels of amino's would trigger gluconeogenesis, no? That would trigger the use of glucose through a different pathway, possibly.

 

[CFS_for_19_years]

Congratulations @gregh286, now I'm seriously considering ramping up glutamine. Highest dose I've ever tried was 2.5g twice a day.