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

Hip

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This recent recovery has coincided with me starting Vit d (25k), vit e (400ui) and Equilibrant X 6 day.
I haven't used amino in 2-3 weeks.
Amazing stuff gregh286.

Apart from Equilibrant, vitamin D and vitamin E, are you taking anything else?

Maybe as you say, oxymatrine and vitamin D are having a synergistic effect for you. Your 25,000 IU dose of vitamin D is a pretty high dose, so it may be having a significant effect.

How long after starting Equilibrant did it take before your full remission appeared? Improvements on oxymatrine usually appear after around a month or so.

I take you know that if oxymatrine has led to your remission, and you stop oxymatrine too early, then you can crash back into ME/CFS. Furthermore, Dr Chia found that for small percentage of people, if you do stop, you may not get a second chance (meaning that when you restart oxymatrine after crashing back into ME/CFS, it no longer works).
 
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gregh286

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Amazing stuff gregh286.

Apart from Equilibrant, vitamin D and vitamin E, are you taking anything else?

Maybe as you say, oxymatrine and vitamin D are having a synergistic effect for you. Your 25,000 IU dose of vitamin D is a pretty high dose, so it may be having a significant effect.

How long after starting Equilibrant did it take before your full remission appeared? Improvements on oxymatrine usually appear after around a month or so.

I take you know that if oxymatrine has led to your remission, and you stop oxymatrine too early, then you can crash back into ME/CFS. Furthermore, Dr Chia found that for small percentage of people, if you do stop, you may not get a second chance (meaning that when you restart oxymatrine after crashing back into ME/CFS, it no longer works).
About 1 week. Yeah I ain't stopping it for foreseeable future.
 

gregh286

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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.
I buy into the th1 and th2 theory tbh. I've had angioedema 22 years. It also seems to have stopped.
Had quite a few gut tests from memory at KDM..nothing stood out like malabsorption.
Had this out with my friend GP.
Said CFS was psychological disorder as blood tests don't pick it up.
There i was with a face the size of a beach ball. Suppose angioedema is psychological also as no test for it? Can't argue with a swollen face.
If cfs was.visible we would be treated fairer.
 
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gregh286

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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.
Certainly seems to work well on many. I read it helping many women. Don't see men coming forward with success from it. Perhaps LDN favours female genetics.
 

taniaaust1

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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.
T It is much easier to recover from an 80% functioning point from a lower point of functioning. I remember when I had my remission from this illness.. . I very quickly improved from that 80% point.

When you crash even if its a little crash, you are far more likely to crash further down from that point so try not to think of these small crashes as being very insignificant as they are danger points in which could end up leading you back to how bad you previously were. Take those little crashes quite seriously and rest up whenever you have them (not resting from a little tiny crash after I caught a virus during my ME remission, sent me right back into full blown ME)

I didnt rest up when I was sick with a virus going around as I truely believed my ME was long gone. I'd been completely well for 2-3 years, able to do a marathon etc etc. Thinking being slightly unwell was insignificant, is the cause of my ME downfall again (what's having a slight cold when u have had severe ME in the past? So I went off to work that day instead of having a sickie and resting.. as it was just a slight cold) .

Dont let yourself make his same mistake and remember you will ALWAYS be susceptable to getting this illness again if you are run down in any way. This is too easy to forget if someone has been completely well for a long time
 
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Want to put in a shout out for mega doses of aminos. I take 100 g a day of a hydrolysed whey protein isolate. The doctor said to start with 5 grams, but I have found far more than that to be extremely useful.

I went for a long walk a few days ago. Came home feeling wrecked. In the past that would have been the start of several days in bed. Instead I woke up the next day feeling fine again.

I also take small doses of d-ribose along with the whey, and perhaps they are synergistic, but my feeling is it is the whey that has made a truly enormous difference. I do so much more now.
 

gregh286

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gregh286

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The
Want to put in a shout out for mega doses of aminos. I take 100 g a day of a hydrolysed whey protein isolate. The doctor said to start with 5 grams, but I have found far more than that to be extremely useful.

I went for a long walk a few days ago. Came home feeling wrecked. In the past that would have been the start of several days in bed. Instead I woke up the next day feeling fine again.

I also take small doses of d-ribose along with the whey, and perhaps they are synergistic, but my feeling is it is the whey that has made a truly enormous difference. I do so much more now.
Good man Murph.
I was taking aminos but found them very sickening drinking them all day.
Glutamine easier to take.
Glad it helps.
 

gregh286

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Ok I have a short update,
I stopped taking Vit D on Tuesday because for own sanity i wanted to see which of the 3 amigos (Vit D, Vit E, equilibrant) was doing the biz.
I have felt a marginal drop off in energy performance since, back to around an 80-85.
No crisis, but noticeable.
So, as sadly I expected, its highly likely the immunosuppressive effect of Vit D was the main player here. It was the supplement i least want to have to take continuously due to toxicity and immunosuppressive qualities.

Also, the recovery was very brisk and I had a feeling equilibrant not work in such a rapid time.

I had a baseline level of 120 nmol (50-200 NHS range) in 2013 Oct.
In KDM in April 2015 it was 42.2 ug/l in D3 and 69.5 pg/mL in 1.25 Di-OH.

Dr. Coimbra says safely goto 400 nmol, i will try to remain inside UK level guidelines.
Waiting on Vit d kits coming to keep a close eye on it as i restart supplementation.
I restart 25k UI today and remeasure levels next week.

It is somewhat reassuring to know that 25k Ui has a highly positive effect, whereas Coimbra calls for 100k Ui+ for most people. Means my immune system just needs a gentle nudge as opposed to all out assault with Vit d.

Maybe I get Vit D to a certain level I might be able to stop it altogether.
Who knows, work in progress but going the right direction hopefully.
 
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Hip

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So, as sadly I expected, its highly likely the immunosuppressive effect of Vit D was the main player here. It was the supplement i least want to have to take continuously due to toxicity and immunosuppressive qualities.
I would not characterize vitamin D as simply being immunosuppressive, as it has complex and multiple actions on the body. Vitamin D boosts T-regs, which may dampen down immune activity, and some people think T-regs may in this way reduce autoimmunity.

However, vitamin D is listed as one of the antiviral immune boosters on the Enterovirus Foundation website, and this study on the antiviral effects of vitamin D concludes:
These results support the hypothesis that vitamin D induced LL-37, and to a lesser extent human beta defensin 2, may play a major role in the inhibition of viruses.

However, these experiments do not completely model the complex effects of vitamin D and may not accurately represent its systemic influence. Further experiments are necessary to fully elucidate the mechanisms of vitamin D induced peptides and vitamin D itself.
LL-37 (which is a cathelicidin) and beta defensin are secreted inside cells, as part of the intracellular immune system that fights infections like viruses and bacteria that exist within cells. In enterovirus-associated ME/CFS, patients have chronic intracellular infections with enterovirus (the non-cytolytic form of enterovirus that lives inside human cells).

Cathelicidin and beta defensin are released inside the cell itself when the vitamin D receptor inside the cell is activated by vitamin D.

In the Marshall Protocol, which anecdotally may be effective against ME/CFS as well as other diseases, they use the drug Benicar to activate the vitamin D receptor, which also releases the antiviral and antibacterial cathelicidin and beta defensin.
 
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drob31

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I would not characterize vitamin D as simply being immunosuppressive, as it has complex and multiple actions on the body. Vitamin D boosts T-regs, which may dampen down immune activity, and some people think T-regs may in this way reduce autoimmunity.

However, vitamin D is listed as one of the antiviral immune boosters on the Enterovirus Foundation website, and this study on the antiviral effects of vitamin D concludes:


LL-37 (which is a cathelicidin) and beta defensin are secreted inside cells, as part of the intracellular immune system that fights infections like viruses and bacteria that exist within cells. In enterovirus-associated ME/CFS, patients have chronic intracellular infections with enterovirus (the non-cytolytic form of enterovirus that lives inside human cells).

Cathelicidin and beta defensin are released inside the cell itself when the vitamin D receptor inside the cell is activated by vitamin D.

In the Marshall Protocol, which anecdotally may be effective against ME/CFS as well as other diseases, they use the drug Benicar to activate the vitamin D receptor, which also releases the antiviral and antibacterial cathelicidin and beta defensin.


In the marshall protocol, don't they also avoid Vitamin D?


I personally think vitamin D is one of the keys here, as it is a precursor to GcMAF.
 

Hip

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In the marshall protocol, don't they also avoid Vitamin D?
They do, however there are complex reasons for that. The Marshall Protocol is designed for treating diseases associated with chronic intracellular bacterial infections (like sarcoidosis, the disease that Trevor Marshall has himself, which he originally devised his protocol for).

It is believed that these intracellular bacteria which live within cells on a long term basis create a protein which blocks the vitamin D receptor (VDR) located inside the cell. The VDR is the "on switch" for the intracellular immune response — the cell's internal immune system. So these bacteria create a protein which prevents the VDR from being activated, so that they can live inside the cells without the intracellular immune system attacking them.

When your VDR is blocked by bacterial proteins in this way, it is theorized by Trevor Marshall that vitamin D will no longer be able to bind to the VDR receptor and activate this receptor. Worse still, it is theorized that this vitamin D which can no longer bind to the VDR creates a lot of other problems. That's why it is avoided in the MP.

Whereas Benicar, which also has affinity for the VDR and can activate the VDR, is able to push away the bacterial proteins and get to the receptor, binding to the VDR and thereby activating it, thus turning on the intracellular immune response which it is believed will kill the intracellular bacteria. That's the basis of the MP: using Benicar to activate the VDR, in order to kill the intracellular bacteria.


But this problem with vitamin D, and the need to avoid it on the MP, only applies to people with chronic intracellular infections, not to healthy people. If your ME/CFS is due to a chronic intracellular viral infection, like the non-cytolytic enterovirus that lives inside cells, then I don't think vitamin D avoidance applies, because as far as we know, the non-cytolytic enterovirus does not create proteins that block the VDR.

So for enterovirus-associated ME/CFS, we would probably be the same as healthy people in terms of VDR functioning. There is likely nothing blocking our VDR in viral ME/CFS. Thus for us, I think vitamin D supplementation will likely activate the VDR as per normal, just as it does in healthy people, and thereby switch on the intracellular immune system.

(If your ME/CFS is due to a chronic intracellular infection / co-infection with Chlamydia pneumoniae though, then possibly that bacterium might be able to synthesize proteins which block the VDR, and in which case, you might need to take Benicar rather than vitamin D in order to activate the VDR).

There is a good write up about all this here: About the Marshall Protocol
 
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antherder

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There i was with a face the size of a beach ball. Suppose angioedema is psychological also as no test for it? Can't argue with a swollen face.
Hi gregh286, very pleased to hear you have improved so much!

Just curious if your angioedema responded to antihistamines? I've only just recently discovered that some types don't.
 

Kenny Banya

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@Diwi9 @gregh286 I bought a big tub of Jarrow L-glutamine a while back, the dosage is 2g, after a few days I didn't notice any benefit. What dosage works for you and is L-glutamine technically the same thing as glutamine?
I was prescribed L-glutamine pills encentric coated, so they had to be made by a compounding pharmacy. The encentric coating was to give the pills a chance to bypass the stomach & reach the intestines to heal the perforations from leaky gut.
Didn't work.
 

Kenny Banya

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Had this out with my friend GP.
Said CFS was psychological disorder as blood tests don't pick it up.
Griffith University are developing a blood test.
I've never rated GPs, even loooooooooong before I was diagnosed with ME.
I call them professional prescription writers & specialist referral centres. Nothing more.