Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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TGF-b1 vs activated TGF-b1

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Ninan, Dec 20, 2016.

  1. Ninan

    Ninan Senior Member

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    KDM measured the activated kind in me. Shoemaker sats you should have about 2000 but the reference range for mine is much higher. Anyone knows the difference?
     
  2. Valentijn

    Valentijn Senior Member

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    I haven't seen anything coming from Shoemaker which would inspire any confidence in his claims. I'd look for another source.

    Additionally, units are sometimes different in Europe versus the US, so values might need to be converted.
     
  3. Ninan

    Ninan Senior Member

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    I wonder if measuring the activated kind and measuring just TGF-b1 is the same but noone seems to know. Mine is very high campares to most but I wonder if it's because it's another test.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Am bumping this thread @Ninan b/c I am also curious if there is a difference between TGF-b1 and "Activated TGF-b1" (regardless of any Shoemaker connection, am just curious if these are one test with two names vs. two different tests)?

    When I had this test by a mold specialist in summer 2015 (not Shoemaker) it was just called TGF-b1 and my level was 9400 with 2380 as the top of the range. When my MCAS doc repeated the test in July 2016, it had significantly gone down to 2455 so just barely above the range. During that period, we moved away from a rental with toxic mold, got rid of all of our belongings, and I began treatment w/mold doc (nebulized glutathione and very mild mold binders that I could tolerate). Am assuming this is why it went down but don't know for sure.
     
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  5. Ninan

    Ninan Senior Member

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    Good to hear, @Gingergrrl Did it make tou feel better? Which binder could you tolerate?
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Being away from the mold was the first step in what is going to be a long recovery process. At the time b/c my MCAS was so severe, I did not tolerate any of the basic binders like activated charcoal, bentonite clay, etc. So I ended up using oats and apple pectin along with daily nebulized Glutathione. I noticed some very marginal improvement from the Glutathione but nothing has led to the improvement that I have had since starting IVIG and in particular the autoimmune high dose IVIG.

    But in regard to the mold, I had calcified lung nodules that docs suspect was from the mold and am certain this would have only worsened if I had continued living there. When I am exposed to mold now, all of my problems worsen, especially my ability to tolerate food and smells. My MCAS is in remission and I am avoiding mold like the plague to keep it that way b/c it is a major trigger for me. I view the significant reduction in my TGF-b1 as a way of measuring the inflammation caused by the mold although I know it is a general test and not directly related to mold per se.
     
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  7. Ninan

    Ninan Senior Member

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    I am noticing the same thing with mold. When I lived in it it didn't bother me at all but now my adrenals crash and I become very sensitive to stuff when I use clothes from my old appartment etc.

    I am trying to find a binder that works for me. I am on activated charcoal now, just a small dose once a day but now, after two days I am beginning to taste metal. I guess that means it is causing redistribution? Same thing happens when I eat stuff with DIM in them, take phosphatidyl choline or even salt water. What symptoms did you get, @Gingergrrl? How did you use the oats? Maybe I should try the apple pectin too, what brand is good?

    Good to know IVIG has helped you! I crashed from taking a small dose of intramuscular GG. Guessing herx, didn't continue. Have you had any problems with it?
     
  8. Helen

    Helen Senior Member

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    If you rinse the clothes that have ben exposed to mold in the last rinse water with vinegar (the clear kind that you don´t use in sallad dressing. Can´t find the word in English. Aettika here) the mold will be killed off. The "aettika" willl not destroy your clothes. Aettika is also used in the last rinse water to preserve and bind colours in silk e.g.

    I learnt from a mold sensitive doctor that she had to get rid of all paper and books from her moldy home and all textile in furniture etc. to get well again. She had only things made of glas and metal left in her home. She stored her other belongings. They can be treated with a certain ozone device to kill off the mold.
     
  9. Ninan

    Ninan Senior Member

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    I just sold and threw away most of my stuff. Had moved anyway and don't need much here. Only using new clothes, I don't want to take any chances. Just saving metal and glass, like she did. Storing all my books, they're the worst but I guess they cannot be saved.
     
  10. Helen

    Helen Senior Member

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    The ozone producing device is possible to use for books. I think you may find it by googling. It is used in boats like yachts.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Ninan I will try to get back to this thread to answer your questions later today and please remind me if I forget!
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    @Ninan Sorry for my slow reply. I am similar in the sense that I am unable to tolerate anything that was from our prior apt with the mold exposure or if I enter another home/location that has significant amounts of mold.

    I did not tolerate the activated charcoal even at a toothpick dose at that time b/c of my MCAS but it is very possible that I could tolerate it now. I have not tried the other two items that you mentioned although I have no problem with salt water.

    As far as the oats, I bought Bob's Red Mill brand of gluten free oats (recommended to me at the time by @Sidereal just in case she has any other feedback for you re: the oats)? I cooked a small amount and mixed w/the apple pectin, and sometimes added fresh apples and honey (for flavor). Some people prefer them w/salt but I liked them sweet.

    The brand of apple pectin that I used was "Solgar" which came in a powder form but I'm not sure if the brand matters. I wanted to try CSM, charcoal, and stronger binders but just was not able to tolerate them at the time (b/c of allergic reactions) which is why I went w/the apple pectin and oats. I also used nebulized glutathione at the same time which was a big part of the process for me. I ordered that from "Wellness Pharmacy" in Alabama per the mold doctor that I saw at the time.

    Thanks and I have not had a herx reaction from IVIG. I had an excruciating headache for 10 days that sent me to the ER the very first time (in July 2016) b/c the infusion speed was too fast. Ever since then, I infuse at a VERY slow speed and have not had any problems. So for me, each infusion is 7-8 hours. Some can do the same dose in 3 hours but I can't and just accept that this is the way it is b/c the pay-off is worth it.

    Hope this helps!
     
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  13. Ninan

    Ninan Senior Member

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    I see. I tolerate it (no MCAS yet at least, thankfully and molybdenum helps with my allergies so I think they might be sulphur issues) but get a metallic taste that I think is redistribution of mercury, which doesn't seem very good.
    Thanks for explaining. When did you take the oats/pectin? Any timing to consider with regard to the glutatihione (or in my case anything else that releases stuff in the bloodstream)? I guess it should be taken away from supplements?

    Glad it helps! My best IV trick from a year of IV saline is to use a clotheshanger instead of the thing they usually have. And put up some nails or something in the right height in the kitchen, bathroom etc, so you can hang it there. Makes long IV infusions easier if you are well enough to move around some.
     
  14. Ninan

    Ninan Senior Member

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    One more question (sorry!): How long did you take it and are you sure that this is what decreased your TGFb1? Did you do the VCS tests?
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Ninan Am at my IVIG (day 2 of 3) so a little hard to type on my phone but want to answer your questions that I missed.

    I am not certain which factor reduced my TGF-b1 tests but I suspect it was a combo of being completely away from the mold plus the nebulized glutathione and other treatments. I have never done the VCS tests (if that is Shoemaker's vision tests?) so I have no comment on that. My mold doc had her own protocols and disagreed w/a lot of Shoemaker's stuff.

    Re: your earlier questions, I've never used molybendum or had a metallic taste and do not believe that mercury relates to my case and have never had any amalgam fillings (vs. severe mold exposure).

    I usually ate the oats/pectin for breakfast and did the glutathione later in evenings.

    Lastly, I do the IVIG at an infusion center (not at home) b/c of MCAS and pulmonary edema/third spacing risks. So far have had no issues but better for me to be safe. But thank you for the coat hanger suggestion! Hope I answered everything!
     
    Last edited: Jan 27, 2017
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  16. Ninan

    Ninan Senior Member

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    Yes, thank you so much @Gingergrrl ! That is very helpful.

    It seems everything that takes the mold away also redistributes mercury in me which kind of tricky. I get a metal taste and after some time my head becomes all numb and I can't think. Antioxidants help, so I guess that's it. But my therapist says I need to get rid of the mold toxins first since they are blocking Nrf2 (and something else?) so I can't get rid of mercury. I don't have any amalgams but still have high mercury in both blood and hair test (the latter according to Cutler's counting rules). Probably due to mold issues making me unable to clear it.

    All my problems have gotten much worse since moving in to that apartment but the last year they have accelerated. I stopped having effect from methylation protocols (probably because of high mercury etc), developed gut issues (candida, SIBO...), low immunity (started getting infections) etc. Which led to my current situation with higher energy but failing adrenals. After reading up a bit I realized it was probably because they fixed my old bathroom and all the icky stuff was spread with the dust that went everywhere in my home. That would explain a lot at least.

    Hope to see what KDM has to say about all this soon, I'm waiting for his recommendations.
     
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  17. Ninan

    Ninan Senior Member

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    Just got them. He says Post Lyme Disorder but no current infection, however I've had mold exposure have and the subsequent immunological consequences (TGFb1 I and something else?) And IBD. So I guess mold is a biggie for me too. He wants me to try Toxaprevent, that's clay.
     

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