• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. T

    Lyme test turning positive after antibiotic treatment?

    Sorry, I know this thread is old -- just wondering if anyone else besides Cigana turned positive on Western blot during/after Lyme treatment? I know 2 ppl who did. Just want to see if there are more. Thx!
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    A couple of things I ran across recently that cause POTS

    I know this post is quite old, but I stumbled across it looking for POTS info. A new subset of POTS caused by mast cell activation is being looked into. Ppl have flushing or tingling in their chest and face sometimes and their blood pressure may actually go high during episodes. When you...
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    Lesser Known T2 Thyroid Hormone Activates Mitochondria

    I tried T2 5 years ago and didn't notice anything. A tad off topic, but the combo of T3 & Vyvanse took me from mostly bed ridden to functional. I have Hashimotos, but my T3 & T4 levels never went below the bottom of the "normal range" & I do have ME, OI, an antibody subclass deficiency, Lyme...
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    Ketotifen

    Ah ok, I'll make sure I don't take it for the first time before work then - thanks!
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    Ketotifen

    Good luck!! Has anyone tried PEA (palmitoylethanolamide)? I read it is a mast cell stabilizer that also stabilizes glial cells. I just ordered some, but I'm curious if anyone has already tried it
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    'Adding Pyruvate makes ME cells normal' - What questions does this prompt?

    @AdamS Thanks for posting the videos with the time to jump to for each! Do you know where the questions he answered in the first video were submitted, by chance? I posted my question on youtube, but not sure anyone reads that stuff. I want to ask if the ME/CFS serum stripped of antibodies...
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    'Adding Pyruvate makes ME cells normal' - What questions does this prompt?

    Can you post a link to the video? I'm curious what criteria he used to define 'normal' & how much pyruvate had to be added to achieve the effect. Because, assuming blocked PDH is the problem, how would adding pyruvate normalize the cells if PDH is still being inhibited by PDK1, 2 & 4? By...
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    CTLA4 Mutations & Orencia?

    Heres my rambling theory on why a link between CTLA4 mutations and CFS/ME may have gone unnoticed: It doesn't seem like the extent of the autoimmunity that just one mutated copy of CTLA4 can cause was really appreciated until the past 3 years or so. CTLA4 mutations had been linked separately...
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    CTLA4 Mutations & Orencia?

    Hi all, Have a theory I would like to run by anyone willing to read it (hopefully @nandixon @Valentijn would be willing to lend their expertise): Do you think CFS could be due to CTLA4 mutations? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4668597/ From what I've seen and read, a lot of...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @Sing Dry mouth is usually a sign of anticholinergic effects. That's really why antihistamines cause dry mouth, they have anticholinergic properties independent of their antihistamine effects (which is why they can worsen cognition & cause dementia with long term use). Cimetidine itself has...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I think my mom & I had symptoms of undiagnosed Hashis (and myself of antibody subclass deficiency) for years, but we could exercise fine and had no cognitive issues. The downward spiral really kicked off after a weird 'flu' -ascending numbness and weakness for me, and malaise/low fevers for her...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I'm not disagreeing with you on the mTorc downregulation; hence my specification that Hif1a can be expressed via a pathway that doesn't require AKT/mTorc activation. My mom and I have high VEGF. I know a few others who do as well. So by your logic, our STAT3 is up-regulated, right? The...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    Yes, you are right, the quinestential Warburg effect is achieved through increased mTOR, which supresses SIRT4. What I should have said was "Warburg-esque effects" referring to a state of Krebs cycle block, ETC block, & excess lactate production despite normoxia. Elevation of Hif1 & 2 can...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    I think PDH block by PDK1 is a symptom of the greater dysregulation, the paper even says that. Many inflammatory, hypoxia, ROS triggered pathways lead to PDK1 increase as part of a Warburg effect induction. PDK1 is up regulated, aconitase inhibited, LDH upregulated, fatty acid synthesis &...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @kangaSue Thank you for sharing. You poor thing! I take it they worked you up thoroughly for vasculitis? I will look into that blood test and the ultrasound! @nandixon So you are saying that CFS/ME is more more like a late-onset Rett syndrome without the MR? I read they had good results...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @ScottTriGuy Great article! Yes, the pathway in that article is the same one. Personally, I've been trying to inhibit TNF-a/NFKB/COX2, but after reading that article, perhaps MTOR is a better place to hit the pathway. I may just give Tagamet a try if it doesn't interact with any of my day...
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    If you don't mind my asking, how was your ischemia diagnosed? Did you end up having a vessel blockage that they found on a CT or elevated lactic acid in your blood? Or was your ischemia more of an SMA Syndrome type picture that is hard to pick up with standard testing?
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    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS (Fluge et al., 2016)

    @eljefe19 @kangaSue LysoPCs are the result of phospholipase A2 cleaving phosphatidyl choline in the plasma membrane of a cell to make AA. Phospholipase A2 can be activated by several things, including LPS. AA is a major precursor to a bunch of prostaglandins/leukotrienes (most of which...
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    I need your first month/season/year of illness for research please?

    Mid September (fall - in N. America) in 2004. 6 weeks after visiting Michigan and camping there - may have gotten lyme, but zero herx on doxy, Zithromax, Flagyl or clarithromycin. Had a flu-like illness, but no vomiting, just numbness and weakness that moved up my legs. The acute episode...
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    Ketotifen

    Depends on what version of subcutaneous IG you do. Standard subcutaneous (Hizentra or Gammagard, etc.) might be a good way to start. Different Subcutaneous Igs: 1. HiQvia- you inject an enzyme to allow the infusion of a months worth of IVIG under the skin in a few hours. You end up with a...
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    Ketotifen

    Awesome! Best of luck! :) And just interesting info - looks like just cannabinoids stabilize mast cells too! Maybe Charlotte's Web oil & MJ could be alternatives to Ketotifen that are absorbed orally, transdermally or via inhalation. Cool! (Credit to @psychodelic on the ME/CFS Gen...
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    Ketotifen

    Oh, so you have IgG deficiency (in the US we call it CVID)?? Horrendous GI inflammation is actually a side effect of the immune deficiency (I have an igG subclass deficiency for which I get IVIG). I had really bad diffuse GI tract inflammation that wasn't responding to meds. My GI docs had...
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    Ketotifen

    Hi Hixxy, I'm so sorry you are enduring so much! I came across your post looking for info linking mastocytosis, EoE, myalgic encephalomyelitis, and cfs to see if they are all different permutations of over-active TNF-alpha & NF-kB pathways. The alpha7 subunit of nAChR that you have...