Chronic Fatigue Syndrome and the Scandal of Medical Ignorance

a reply to: Stormdancer777

several months after the coma, a doctor told me that he saw epstein barr bands, so potentially multiple scelerosis. nope. it's the mycoplasmic infection, which the other fellow in the thread said he has taken several rounds of antibiotics to defeat, only to have it come back again. the mycoplasm infected cells are creating hardened sites that are more difficult to permeate, so all the antibiotics are doing is killing the mycoplasm stages that are not fully developed. if they take over nerves controlling immunity functions, such as the endocrine system, it then causes your body to attack itself like an auto immune disease. this is why i asked him how long his antibiotic therapy lasted.

a reply to: Stormdancer777

I also forgot that I also stack all of what I mentioned with 5-HTP and DL-Phenylalanine. I'll look into adding iron, but I've had my levels checked (as well as thyroid function) over the years and it's always "normal"

a reply to: MystikMushroom

add sublingual methyl b-12 (methylcobalamin) it has to be the methyl form of b-12 not normal b-12. the methyl form is where the enzyme has changed normal b-12 into its methyl form, the form your nerves use to regenerate and repair.

p.s. i just take the tablets and let them melt under my tongue. they aren't sublingual but i treat them like they are

Wow, I thought I had a good grasp on CFS literature and info, but this is 8 pages (thus far) of info goldmine. I'm now aware of a few other supplements I could try that I'd never heard of before

I do want to mention real quick that if anyone tries vanadyl sulfate, be careful. I've been aware of it for some time, and am aware that it can be toxic in higher doses. I believe what is considered to be the safe amount to take daily is 1 mg maximum.

originally posted by: Nyiah
Wow, I thought I had a good grasp on CFS literature and info, but this is 8 pages (thus far) of info goldmine. I'm now aware of a few other supplements I could try that I'd never heard of before

I do want to mention real quick that if anyone tries vanadyl sulfate, be careful. I've been aware of it for some time, and am aware that it can be toxic in higher doses. I believe what is considered to be the safe amount to take daily is 1 mg maximum.

yeah, i open the capsule, pour it out on its own bottle top, then take tiny bits at a time over the course of the day. i usually don't even finish the contents of one capsule for the whole day. i made the mistake of taking a whole capsule. i could've run a marathon but then, i had the worst intestinal cramps that i had to take a gas x, to relieve. so it helps but only in small doses. the full pill/capsule is overkill.

There are chronic infections that can be very difficult to detect--Lyme, toxoplasmosis, and others. Have you tried several weeks of doxycycline?

originally posted by: Tusks
There are chronic infections that can be very difficult to detect--Lyme, toxoplasmosis, and others. Have you tried several weeks of doxycycline?

you raise an interesting point as well that there could be opportunistic infections taking hold because the immune system is compromised, which also happens in hiv and aids. the only difference is, the types of infections. hiv and aids have specific secondary infections. i would imagine this is also true for gulf war syndrome.

originally posted by: undo
a reply to: TheCounselor

do you think you are contagious during antibiotic therapy or only after it, when the thing comes back again? i have to wrap my head around why it's coming back again. it almost sounds like its presenting the same incubation problems that lymes disease has. how long are your antibiotic treatments?

From what I understand, it encapsulates. Always there, but dormant. It's the mycaplasmas (mycaplasmi?) that seem to flood my lungs.
I can slam away at life, like Stormdancer, and then it will just hit, like a puppet's strings getting cut. I'll wake up soggy feeling. A day on the golf course will leave a three day hangover feeling.
As soon as a person starts to feel better, they want to DO things, and then wear themselves out doing things.
I think it returns, or resurfaces, due to my impatiance. I love my job, but I also like theme parks, swimming, fishing, refurbishing the house, woodworking, etc..

I have a basic theory that if something feels like it's sticking in my throat, don't eat it anymore- that's my only dietary rule, plus I take b's' c's, d, and magnesium, but I've done that since my teens.

The antibiotics usually last a month, a high dosage, but the downside is that it does affect one's immunity, which is common sense. We've now since stopped that silliness, last time, I only took 'em for a week before they got too much.
I feel it's best for me to try to fight it on my own.

a reply to: Stormdancer777

Thanks for the info on yoga. I am currently doing daily gentle muscle stretches and hope to progress onto yoga. One of the main signs of CFS is muscle deconditioning so this would seem like a sensible approach.

originally posted by: PeterMcFly
a reply to: earthblaze

You should try a ketogenic diet. Being a nurse will help you manage (detect/avoid) excess acidosis that may result and possible electrolyte imbalance.

Due to your professionnal formation, you may have learnt that ketone bodies are sign of pathology, but in fact it is one of the greatest mistake of modern time...

Since we are born in a high carb. regimen, transition, especially when older & sick may be risky, but ketogenic diet is the prefered & most efficient cellular metabolic pathway. I know this is a very crazy & strict diet, but when confronted w/t such degradation of qualities of life, it is nothing compared.

And don't worry, our body is quite capable of making the glucose it require by itself, it is called Gluconeogenesis.

Try to find "Life without bread" it will change your life...

I was forgetting: Also say bye bye to urinary tract infections, struvite, pyelonephritis because ketone bodies while food for your cells, are poison for lots of bacteria.

Thanks for this. I am a big believer in ketogenic diets and tend to do 2 months a year on this. I have signs of metabolic syndrome and I know a ketogenic diet will reverse this.

originally posted by: MystikMushroom
I take prenatal chew able gummie vitamins, as well as a sub-lingual B-complex. In addition to that, I also supplement with B-1, Kudzu, Triphala, Liv-52, choline, inositiol, GABA, ZMA (zinc/magnesum) and melatonin (now and then).

I can honestly say I have more energy. I don't think its in the food or water, as I've always been a sleepy, tired person ever since I could remember. Dietary changes never seemed to do anything for me. Nootropics are an interesting area to look into, I thought more people knew about them but I guess. not.

Hi. I have just started with choline, inositiol, ZMA (zinc/magnesum) and sul linguil B12. I think diet can help but you have to be committed to doing it long term.

originally posted by: Tusks
There are chronic infections that can be very difficult to detect--Lyme, toxoplasmosis, and others. Have you tried several weeks of doxycycline?

Antibiotics do a lot of damage to the gut flora and I would not take them unless a culture and sensitivity test was done (just my personal choice).

An article I saw today suggesting a third of Chronic Fatigue Syndrome patients may in fact have Postural Orthostatic Tachycardia Syndrome (POTS).

Link

originally posted by: earthblaze
A article I saw today suggesting a third of Chronic Fatigue Syndrome patients may in fact have Postural Orthostatic Tachycardia Syndrome (POTS).

Link

Did you read through the comment section on the link you posted, interesting post.

originally posted by: Stormdancer777

originally posted by: earthblaze
A article I saw today suggesting a third of Chronic Fatigue Syndrome patients may in fact have Postural Orthostatic Tachycardia Syndrome (POTS).

Link

Did you read through the comment section on the link you posted, interesting post.

Yes I read them. I have heard of Julia Newton´s work before.

a reply to: TheCounselor

i've heard of people being on several months of antibiotic therapy for this, but as earthblaze says, the damage it does to your gut is crazy. low yeast diet is very helpful in this situation although taking a probiotic like acidophilus would interfer with the antibiotic so you'd have to use that AFTER the antibiotic therapy was done to rescue your digestive system.

list of stuff i take (i'm diabetic type 2, so some of the stuff is targeted at resolving that)

-grape seed extract (antioxidant from grape seeds)
-resveratrol (antioxidant from grape skin)
-co Q-10 (energy, kidney support)
-methyl b-12 (nerve repair)
-alpha lipoic acid (antioxidant and nerve repair)
-L-carnosine (energy, kidney support)
-chromium picolinate (blood sugar balance)
-gymnema sylvestre (blood sugar balance)
-vanadyl sulfate in itty bitty doses (energy, blood sugar balance)
-hawthrone berry as needed (when blood pressure rises and kidneys start freaking out)

A thc ratio of 1-3% in foods will work wonders during digestion. Works really well after a fast on an empty stomach. Seems it may be better when activated.

originally posted by: deadeyedick
A thc ratio of 1-3% in foods will work wonders during digestion. Works really well after a fast on an empty stomach. Seems it may be better when activated.

what's that mean? can you elaborate?

a reply to: undo No there is really anything i could say other than that. It is just a nudge in the right direction. One would have to see to believe. Another great helper is moonshine not watered down either.They both have the antibacterial properties everyone is looking for. I will say that the nutritional value of hemp is enough to thrive on.