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endicronologist, geneticisist----what do you recommend for this:

Discussion in 'General Treatment' started by xrayspex, Nov 17, 2016.

  1. xrayspex

    xrayspex Senior Member

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    hey with aging after having chronic fatigue and pain for 27 years--and I have "MCS" am chemically sensitive and there are not many meds or even supplements that I tolerate well and usually micro-doses if do ---ie I feel awful if I have vitamin d and even ibuprofen makes my kidney area burn in pain often the next day---so not worth it usually----but its rough with these issues not to be able to treat. I also do not tolerate invasive procedures well so it really limits my options in mainstream med world for treatment.

    so the conversation I want to have with my doctor is if we should and how we would try to figure out what to do about that. I know that is the million dollar question if you you just consider it to be part of cfs/me or something. But i am concerned that as emergencies come up I am going to be left with no options or what if I end up in ER or in nursing home and at some point(s) don't have control over what they give me. That happened once a couple years ago when had to go to ER for acute vomiting/vertigo--they put me on IV for antihistamines and normal adult dose of that makes me drunk seeming--I would just nibble a crumb off a benadryl if needed it in a pinch but avoid even that because of side effects.And its a bummer to not be able to take Vit d because have ostepenia.

    My doc and I think I could have Ehlers Danlos which would explain a lot of my fragility and hypermobility etc etc there isnt really a solution for that but genetic testing could confirm and maybe that would help to have in chart. i dont know if doc would be open to referral to geneticist---but I wish they would do comprehensive genetic testing and rule out like Porphyria etc things to explain my chemical sensitivity etc

    Or could an endicrinologist figure out some of the intolerances? I did have cortisol testing 5 yrs ago and wasnt positive then. But I feel that the medical system should be obligated to help me figure this out better so there is solid plan outlined in my chart of how to safely treat me---a lot of things are dangerous to me physically and chemically. Does anyone know more about medicine to say if there is a specialist that might be able to solve the chemical sensitivity problem? It just feels reckless to not have that better defined in health chart.
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    I have figured out some of my MCS stuff. My 23andME results when I ran them throu the genetic genie detox panel showed up a common mutation (it was only one copy mutation though affecting a lot of those genes) but this mutation can cause issues to drugs of a certain drug family (Cytochrome P450) which tons of drugs come under.. and it just so happened to be that I'd found that I had reacted to most of the drugs I'd tried coming from that drug family. So I know I know to be super careful if taking any of those ones.

    See my results at bottom of my post with all the CYP single copy mutations.. +- ... CYP1B1 .. I have 2 mutated genes and CYP2D6 I have 3 mutated genes,... Im extra sensitive to that drug family

    http://www.aafp.org/afp/2007/0801/p391.html

    I think having the ME caused these gene mutations I have to be expressed more in me.
     
    Last edited: Nov 17, 2016
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  3. taniaaust1

    taniaaust1 Senior Member

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  4. xrayspex

    xrayspex Senior Member

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    thanks Taniaaust
    you know I actually did do 23&me right when it came out, I forget about it and then couple times a year am reminded should check it for something. I did have other independent cytochrome testing done at another company about 5 years ago that showed I don't tolerate P45o cyp2d6 I think it was---that could explain why a lot of meds etc dont work out well for me

    However, my primary doc at that time was in mainstream system & didnt seem too impressed by that. frustrating--my impression is most of them are bummed if we come in that sort of info,they are like oh sheite too much work and doesn't fit into managed care model recommendations. That is why I was wondering if I should ask to be referred to geneticist in their system but they may have barriers for that as well.

    I am curious if in US people with the issues we have here have had much luck organizing a system in there medical chart to be proactive about some of their vulnerabilities. I.E.: when I went to er and they had to act quickly and gave me IV antihistamine, it wasnt life threatening for me to get large dose but it made it hard for me to communicate as I got better from the acute episode because it made me intoxicated. my doc at the time said there is no way to signal in one's chart that you should have baby dose in that sort of emergency--either you have a bracelet or something in chart saying various drugs are an allergy and not to use it or they just give you regular dose---its black and white no in between.

    but anyway, curious how "detox genie" works on 23&me, when I have time will have to poke around on there again--are mainstream docs open to utilize that info regularly?
     
    Last edited: Nov 18, 2016

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