Building a supplement regime for early onset cfs

[pogoman]

We seem to have similar metabolisms. For a long time, I had to avoid anything even remotely related to sulfur, including selenium, thiamine and multiple other supps, and MSM and DMSO, which I used on a painful knee followng a slip-and-tumble on the stairs here. It did close to nothing for the pain, and launched me into a world of exhaustion, anxiety, and multiple other bad responses.

Back in 1995 I had a bad allergic reaction to septra, hives, itching the whole bit.
As it was the only antibiotic that was working on a drug resistant infection, they brought in a specialist doctor that controlled the dosage to where I could continue on septra treatment.
So when the literature said there's no connection between sulfa allergies vs sulfur or sulfates or sulfites I am skeptical.
Right now I'm taking plenty of molybdenum after starting on taurine and green tea extract to see if it helps my lipid issues.

Fwiw about DMSO, I found from experimenting that it mixed with skin lotion and either coq10 or the contents of Advil gel caps helped with muscle pain.
I still do it if my ankle starts acting up.

The mysteries of why which does what still elude me, but I've become much better at noticing reactions and pretty much knowing what to cut out to test what's causing them.

the fatigue I got 2 days after starting the thiamine was from phosphorous depletion caused by the thiamine, due to refeeding syndrome.

Mysteries is right
In the past I've had temporary cessation of symptoms from thiamine and also l-lysine and I still wonder about why they helped for a short bit.
Retrying them later did not repeat the improvements.

I've had middle of the night insomnia for a couple decades now, when I was working a dayshift job almost 15 years ago I went on Ambien CR and proceeded to lose close to 30 lbs over two or three months.
Went off it a few years later and slowly gained the weight back, retrying Ambien again did not lose weight

 

[YippeeKi YOW !!]

So when the literature said there's no connection between sulfa allergies vs sulfur or sulfates or sulfites I am skeptical.

I agree, and it actually makes me cycle between loud guffaws and serious pissed-offed-ness ...

Fwiw about DMSO, I found from experimenting that it mixed with skin lotion and either coq10 or the contents of Advil gel caps helped with muscle pain.

Thank you for that tip, @pogoman ..... do you dilute the DMSO the requisite 50% or so first, or do you let the lotion provide the dilution?

Either way, it's a great hack and I may be able to work up the courage to give it a try .... thanks again !!!

In the past I've had temporary cessation of symptoms from thiamine and also l-lysine and I still wonder about why they helped for a short bit.
Retrying them later did not repeat the improvements.

It's one of the most bedeviling oddities of this cruddy little whiplash asp of an illness. I cant count the number of times I've seen this same lament posted, or been tempted to post it myself.

I could understand why it might stop working after a bit, but why cycling off of it for a while and then coming back to it still doesnt produce the previous beneficial effect is totally baffling ....

 

[YippeeKi YOW !!]

Thank you @Mary, esp for not calling me out to inspect my (currently well-up-to-date) Amiable Neighborhood Pedant's License ....

I love that word .... it's almost onomotopoeitic, in that, at least in my fevered imagination, it kinda sounds like what it means ....

 

[Mary]

Thank you @Mary, esp for not calling me out to inspect my (currently well-up-to-date) Amiable Neighborhood Pedant's License ....

I am a Former Legal Secretary, so a pedant in my own right! Many a time I've had to curb the impulse to correct others' grammar, spelling, usage, etc.! (though never got a license!)

Whoops - I'm also a moderator and I think we're in danger of taking this thread off-topic . . . so I think we should stop it here - apologies to @Ronagrenade2020 !

 

[Wishful]

So when the literature said there's no connection between sulfa allergies vs sulfur or sulfates or sulfites I am skeptical.

I think they mean that they are unrelated biologically speaking. Confusion between allergies (type I reactions) and other types of sensitivities seems common. A person might have a type I allergic reaction to sulfa compounds, and might also have a different form of reaction to sulfites. I'm not sure whether there are different reactions to the various oxidized states of sulfur.

 

[pogoman]

Thank you for that tip, @pogoman ..... do you dilute the DMSO the requisite 50% or so first, or do you let the lotion provide the dilution?

Either way, it's a great hack and I may be able to work up the courage to give it a try .... thanks again !!!

Your welcome!
I keep a bottle of the 99% dmso and put a few undiluted drops mixed in with the skin lotion in a condiment glass bowl along with 3 or 4 advil gelcap contents.
Then cover it with some aluminum foil and keep in the fridge usually if I'm not applying it every day.

It's one of the most bedeviling oddities of this cruddy little whiplash asp of an illness. I cant count the number of times I've seen this same lament posted, or been tempted to post it myself.

I could understand why it might stop working after a bit, but why cycling off of it for a while and then coming back to it still doesnt produce the previous beneficial effect is totally baffling ....

I agree, the only constant with me is that mitochondrial and muscle supplements do help symptoms.

I think they mean that they are unrelated biologically speaking. Confusion between allergies (type I reactions) and other types of sensitivities seems common. A person might have a type I allergic reaction to sulfa compounds, and might also have a different form of reaction to sulfites. I'm not sure whether there are different reactions to the various oxidized states of sulfur.

True, I may have more than one allergy to different sulfur types.
I've had a higher count of allergies since I was a kid and my siblings had no allergies.

 

[Swim15]

If it’s early onset it’s probably more treatable.

Why fuck around with stuff we know that just treats some symptoms, and doesn’t fix it, instead of going for an actual treatment?

 

[gbells]

Hi guys,

I am trying to build a supplement plan to help me with my symptoms, nely fatugue and brain fog.

So far I am using
Vit c 2000mg day
Glutathione 500mg day
Vit D 3000iu day
B6 50mg
P5P 50mg
B12 methylcobalamin 1/2 sublingual nugget a day
Pantothenic acid 550mg day

I am thinking of adding mitochondrial support of:
Coq10 - 200mg
Selenium-200mg
D ribose
Creatine 5 grams day
ALA
Acetyl L Carnatine

Basically i am resting in bed all day and still get tired and worsening brain fog from screen time, I need something to increase my mental capacity so that I can comfortably rest and incorporate a balance to screen time but still accrue energy to recover.

Could you help design the ideal stack to make sure all energy bases are covered please?

At this stage Im not looking into anything stronger than off the shelf stuff but open to hearing what folks rate.

I just want to warn you that frequent dosing of strong antioxidants (vit E, NAC) or Vit D (steroid) is immunosuppressive and puts you at risk for cancer.

Also, if you have Epstein Barr Virus then it is inhibiting your Krebs cycle metabolism in the mitochondria and there is no mitochondrial support that will change this.