1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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  1. dbkita

    dbkita Senior Member

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    Can you make a thread on that Danny? It might be instructive to some. Correct knowledge is very important for all of us here imo.
     
  2. dbkita

    dbkita Senior Member

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    Heh you don't probably want to know. My case is very atypical. Due to my rare autoimmune disease there was no choice but to use glucocorticoids as the main anti-inflammatory agents. Florinef to regulate electrolytes was huge. Cytomel T3 to bypass high reverse T3 so I could get out of hypothyroid was massively important to get metabolism up and get the body out of crisis mode. T3 actually upregulates NE receptors especially in the brain, but if you are hypothyroid and your metabolism is a mess then you are screwed anyways and the ANS churns out NE faster than you can imagine. Other hormone replacements like DHEA and testosterone (I am male) are also anti-inflammatory.

    Adding methylation support is a bit trickier. Methylfolate, B2, B3, B6, mb12 all improve energy, mood, neurotransmitters but do not seem to lower inflammation. If anything methylfolate increases it for me. But ... adb12 seems to definitely have some positive effects in that regards so it is a staple of supplement regimen now.

    Finding out I had Celiac's and going gluten free was huge. Learning I was allergic at a IgG and IgA level to milk, soy, corn, and olives was important and avoiding any amounts of those in food or supplements was key. Good probiotics helped. Sialex from Ecological Formulas with mucin and sialic acid has done wonders for certain aspects of my autoimmune disease (sialic acid has been recently reported as key to helping the friend or foe identification of IgG proteins by augmenting the detection apparatus of the active Fabc domains). High protein diet to fend off muscle catabolism so norepinephrine drops.

    Only recently did I learn I have diabetes insipidus so that was not helping things. Now that I am on desmopressin, pain levels in the muscles have dropped a lot. Another rare disorder but the clinical and laboratory results were undeniable and vetted over two years. Just trying to tune dosage now. Water control as you can imagine is pretty freaking fundamental.

    I have tried other things. Some of the anti-oxidants like r-lipoic acid, sodium ascorbate, vitamin E, etc. are all part of my regimen. Curcumin is very anti-inflammatory but sadly destroys my gut. I must be allergic to the turmeric. Quercetin is also anti-inflammatory but by the third day of taking it I have insomnia. Fun. I take a boatload of magnesium. I take some of the Krebs intermediate (fumarate, malate, citrate, pyruvate, etc.). Lot of my supplements are to boost Krebs cycle. Calcium pyruvate and d-ribose have been VERY beneficial. While they are not strictly anti-inflammatory, keeping your body out of pain, stress, and crisis states so you can sleep, eat, have a good mood, is very important for immune system regulation.

    At this point I think one of the final frontiers is getting some of my mineral balance right. Manganese and molybdenum levels are in the toilet. Zinc, copper, selenium are ok. Lithium is non-existent. The other final frontier is my gut. I know have a gut dysbiosis based on a SIBO test. I also have a lot of inflammation in the gut. So yeah still work to do.

    My hope is to be able to gradually lower my prednisone to a state that is not as destructive ultimately for connective tissue and bones for the long haul. But if I had not gotten on glucocorticoids in 2009 I wouldn't be here, and if the doctors did not increase them once the autoimmune disease was diagnosed I would have not been able to go back to work.
     
    Christopher likes this.
  3. dbkita

    dbkita Senior Member

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    I got discouraged when I really researched the VDR stuff and the mistake she made with regards to the wild type haplotype. But when I researched the CBS stuff and the 10x upregulation myth and pieced together what she and others had done to arrive at that erroneous myth that has been perpetuated all over the place, I really got demoralized. That just should NOT happen. I think she still has a lot of excellent ideas, but the more I research the SHMT1 gene for example, the less cut and dry her conclusions seem to me. I also think the low protein recommendation for some of us is disastrous. I think she has inspired a lot of people but those who do not have a solid foundation in some of these areas of biochemistry and molecular biology / genetics have to be very cautious. The biggest concern I have on these boards are people who over-react to their SNP results, especially the high population frequency heterozygotes. Caution. Caution. Caution please.
     
  4. caledonia

    caledonia

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    Based on your description, it sounds like I have most bases covered, but could try curcumin/quercitin and also gut dysbiosis keeps cropping up again and again.
     
  5. caledonia

    caledonia

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    It sounds like addressing gut dysbiosis may be the key for me to resolve the taurine wasting issue. Hopefully, the muscle catabolism will resolve itself through methylation supps? Or is that another gut issue?
     
    ltd likes this.
  6. dannybex

    dannybex Senior Member

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    I agree. I just don't feel smart enough to really get into it. For example if I posted a quote by someone else, then others might ask question which I don't have the answers to, you know?

    I can try to find the post (from the trying low oxalates yahoo group) and post a quote from it -- regarding her misinterpretation of research on oxalates with regards to the krebs cycle), but it's probably best for those interested, to join that group and discover the clarifications over there.
     
  7. dannybex

    dannybex Senior Member

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    Over on the low oxalates board, they say that low sulfur is the cause of muscle wasting, another disagreement w/Yasko.
     
  8. thegiantess

    thegiantess

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    Wowzers. The doc thinks that inflammation of the gut and dysbiosis (which in my mind are generally hand in hand) causing the proteins to not break down well into their component parts and therefore I showed low with a lot of aminos. The only high measure of value was Taurine. Who knows. It is a slippery slope as this testing and thinking and stressing and what not. For the birds, I tell ya!

    It is likely gut dysbiosis that is the issue as that is ALWAYS the issue for me. My gut is the first thing to respond to any kind of stressor and it is always the source of any problem I have. I have been working to get that in order by taking glutamine, and other enzymes for a few months. It was getting better.. and then I had a week long hiccup, but we are back on track. I have been working on this gut issue for years and nothing really seems to resolve it totally. For me, I lack enough beneficial bacteria and so the goal has been to aid in the healing of the gut lining (glutamine and collagen) and re-populate with fermented foods, high dose probiotics, yogurt, etc. I also take curcumin for inflammation.
     
  9. dbkita

    dbkita Senior Member

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    The gut and immune system are very intertwined.
     
  10. thegiantess

    thegiantess

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    Which is the kicker. Aside from getting shingles last year I am never sick. Never. It is annoying really.. how many of my states and issues don't actually correlate to my physical being.
     
  11. dbkita

    dbkita Senior Member

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    Ironically people with an overeager immune system will tend to sick less often. May depend on genotype. But they can also over-react to things they ingest or are exposed to. Double edged sword.
     
  12. dannybex

    dannybex Senior Member

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    Do you mean 'sick' in the generic sense -- like getting a cold or the flu, with a normal, "decent" fever that lasts more than a day so that it can kill off the buggers? That would represent of course a 'normal' or balanced immune response.

    Unfortunately, with ME/CFS, (or as they called it for a few years, CFIDS -- for 'immune dysfunction') that's not what we have...normal, balanced immune function.
     
  13. thegiantess

    thegiantess

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    I mean, sick, yes in the normal sense. I don't get sick in the abnormal sense either, ha. I don't have CFS so I'm not really that familiar.

    I am simply saying that the last time I was sick (outside of shingles) was about 4-5 years ago. Got some crazy 24 hour flu bug, had a 104 fever, chills, could barely stand. It came and went in a day. Since then... not so much as the sniffles.

    Now, you mean sick in the broadest of terms, as a way to descrbe any ailment.. then I guess I have been that. I have this whole methylation cycle nonsense I have been trying to sort out and I am pretty sure I have IBS. So maybe I'm mostly sick in the head! ;)
     
  14. thegiantess

    thegiantess

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    Hard to say. Not sure if my system is overeager or not. I was rarely sick as a child/teenager either. I went through the normal years of tons of ear infections, but then after that I almost never got to miss school for illnesses. I suppose my immune system has always been robust... maybe it is overeager and I just don't know it.

    The only thing I react poorly to is excessive amounts of alcohol. I could drink with friends and we can have the same amount of drinks. The next day they will simply be hungover, whereas I will be throwing up. They like to tell me that they wish they could just get it out like I do, but I'm not sure I'm the lucky one.
     
  15. dannybex

    dannybex Senior Member

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    If you have IBS, then perhaps you might consider 'Prescript Assist'. It's the only SBO proven in studies to reduce IBS by 81-100%. Lots of info online, and the pubmed studies as well.
     
  16. Sabrina

    Sabrina

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    dbkita, would you mind pointing me to your "Couple of Questions" thread?

    thank you so much.
     
  17. Valentijn

    Valentijn Activity Level: 3

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  18. roxie60

    roxie60 Senior Member

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    I had low Taurine but also had H Pylori
     

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