GcMAF vs SBOs Gone AWOL (Gut FUBAR) (a weird one)

Hey all,

By way of introduction, I'm fairly new to the forum, so if my post's content is inappropriate for this subforum, please excuse me.

I'm suffering from a strange form of CFS/ME, which is totally beyond the scope of your classical CFS/ME models (if there is such a thing!).

18 months ago, I was drinking from a copper cup, while eating lots of fatty red meat, along with not too many daily carbohydrates, as well as finally throwing in the straw that broke the camel's back - an obscure SBO probiotic from Japan called "Prolisan", containing (or harboring!) a species known as S(treptomyces). Griseus.

After taking the probiotic, I became strangely ill - I couldn't sleep a wink, I was not going to the toilet, but I was strangely not constipated, my poo started to smell very earthy, I was peeing almost constantly, I tended to have more foamy pee than before (which I later discovered escalated the less carbohydrates I ate) and gradually, I noticed that my skin was breaking down and thinning in many places (collagen loss/destruction).

When all of this began, my body felt really wound up and I would go to bed each night and lay there the entire night without sleeping, which I found totally bizarre (there had been no psychological traumas around that time - business as usual for my psyche!). It was as if some unknown force was winding my body up.

Gradually, I noticed that my joints were becoming weak and cracky, while my skin seemed to be thinning rapidly in places like my face, hands, neck, feet/toes. Eventually, I noticed that the more carbohydrates I ate, the less bubble I had in my urine and the less I would lose collagen. It seemed that when my body had used its carbohydrate stores (blood sugar, glycogen etc.), it could not switch over to fat burning mode somehow. The strange thing was, my body seemed to burn collagen rather than fat stores and muscle tissue...I had never read about this anywhere.

Suffice to say that my doctors don't believe that I have this problem, but it is literally killing me piece by piece.

I reasoned that somehow the soil-based organism (SBO) in my gut was creating an out of control immune cascade (interleukins etc.), which was stimulating my LHPA axis to constantly create a situation of high cortisol, which was ultimately having the effect of not allowing my body to shuttle copper into cells and thereby creating an insufficiency of copper-based enzymes.

As my condition worsened, I noticed that VOCs could easily damage my vascular system, whereby whenever I'd go in a public place with perfumes, car fumes, cigarette smoke etc., I would sustain vascular injuries anywhere in my body. Sometimes, if the vascular damage was in my brain, I'd notice stroke-like symptoms, which were so extreme that my heart and lungs would shut down for a few seconds and I could no longer breathe.

I learned from Dr Myhill and Acumen Labs that my SOD activity was very low at 36%, indicating what I already suspected as either an actual or functional copper deficiency.

I believe that many systems in my body that require copper for "cuproenzymes" have virtually shutdown, including lysyl oxidase (to make collagen), cytochrome c oxidase (to make energy in mitochondria), super oxide dismutase (master anti-oxidant) etc. etc.

When I first took this soil-based probiotic, I had the feeling that I'd "died inside" as if my neurotransmitters had shifted to such an extent as a consequence of a badly deranged gut environment.

I was wondering if GcMAF in the form of MAF 314 or MAF 878 could help my gut rid itself of this S. Griseus organism, which may be feeding on all the biounavailable copper I'm harboring or something else, I'm not sure.

My life is virtually impossible to constantly keep feeding myself carbohydrates and avoiding VOCs as if my life depends on it, so either I may just die, or I have to beat what's disturbing my body to such a violent extent.

Does anyone have any advice please, particularly in the case of measuring cytokines and using GcMAF in different forms?

Thanks for your help.

Best,
Scotty

Hi Scotty. I am thinking..maybe you can try the Metametrix gut profile test. Some CFS specialists have started using it.

http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects

It seems like GcMAF might work for many things, as long as you dont have autoimmune problems.....if it were me, I would do the above test, then go and see a gut specialist such as Dr. Leo Galland. He is very thorough and might be able to advise you about GcMAF as well, since he is somewhat familiar with it.

Best of luck.
xoxox

Hi, Scotty.

Since your problems started after taking the probiotic, I agree with Daffodil. Running a comprehensive stool test to find out what your intestinal bacterial populations are would be a good idea. The Metametrix panel she mentioned includes antimicrobial sensitivity testing (both antibiotics and herbal antimicrobials), which can help in choosing treatment. If you can't order it though a physician, it can be obtained without a doctor's order from www.YourWaytoWellness.com or from www.directlabs.com

Best regards,

Rich

I've done the Metametrix stool analysis and it was pretty unremarkable, other than noting some "unknown taxonomy" populations. That test was damn expensive, so at the time, it seemed pretty worthless. I sent my stool off to loads of labs and nothing remarkable was found, which was totally disappointing.
The most remarkable thing is my symptoms implying a severe disturbance to my endocrine system and particularly my copper metabolism, which is swiftly killing me. You don't want to live in our universe without cuproenymes let me tell you! ;-(((
I genuinely thought that the Metametrix GI effects profile would be a revelation, but to me, it seemed a waste of money.
I really wonder if the stool effects are representative of upper GI colonies or problems.
I've tried a lot of different things like biofilm protocols etc. all without much effect.
Something that did seem to have a very transient effect was taking another soil probiotic in an unusual nutrient base - that gave me a very deep sleep and I wasn't peeing all through the night, implying that the effect on my GI tract calmed the endocrine disturbance to some extent.
My problem is so damn elusive, but I do not that something is overstimulating my LHPA axis and preventing me from shuttling copper into cells (as well as causing me to lose sodium/water through aldosterone insufficiency).
I think that the CFS/ME component is the lack of mitochondrial function from intracellular copper deficiency, which Acumen Labs has helped to confirm to some extent.

So, have you had tests on ceruloplasmin-24 hr. urine test? Also liver function often changes causing the liver enzymes(AST and ALT) to be elevated. They can do a liver biopsy to see if copper is being deposited there. From what I understand, copper is transported into the cells in the small intestine. Not sure if that would show in a stool test or not?

Sorry you are having such difficulties. Hope you can figure something out that helps.

Good one liquid sky...
I've had ceruloplasmin measured (low @ 0.14...0.2-0.6) but not 24 hour urine - my endocrinologist refused me anymore testing and told me that I was harassing him (mainly as a ploy to shut me up).
I believe that my liver enzymes are elevated...
I believe that somehow, there's a condition of stress-induced metallothionein dominance, which is keeping ceruloplasmin low, but that's speculation on my part.
I'm going to try to get a practitioner who can interpret my copper/zinc profile test because Great Plains Labs will not deal directly with patients.
I think the only way to restore my copper metabolism is to destroy what's disturbing my gut ecology and endocrine system. I was looking to GcMAF as a means to achieve this...

I agree that the gut ecology is crucial to disease states. I have read that kefir can colonize the gut with good organisms, where yogurt cannot. Can't prove it. I just made my first batch of kefir. Not quite as good in taste as kefir from the health food store. I will do the next batch with organic milk as the antibiotics in milk may kill some of the bacteria.

I don't know much about GcMAF. I have high copper in hair analysis. Don't know how much stock to put in those tests. Hope you find a way to restore your copper metabolism. If you do, send me a PM please. My liver is inflamed and I think it has to do with copper metabolism too.