Can't find useful medicare MTHFR doc, can't pay out of pocket.

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This topic contains 1 reply, has 1 voice, and was last updated by  suddenly_feeling_normal 2 years, 8 months ago.

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  • #1821 Reply

    suddenly_feeling_normal

    I have a friend who is falling apart, and I think he may have MTHFR. He’s really having a hard time keeping it together, staying on task, and his memory is failing, so I’m writing this for him. He has suspected something is up with his genes for a long time, but his medicare doctor told him that he didn’t need genetic tests.

    So, I scoured and scoured the internet trying to find a doctor that knows about MTHFR in Bloomington, Illinois or anywhere in Illinois and I cannot find a thing. I tried searching for MTHFR on all of the sites you provided, I searched medicare.gov using a code in Google, I tried the top sites for finding doctors, and I tried Googling everything I could think of, and nothing.

    He’s suicidal and he’s about to fail his last semester at school due to being overwhelmed by his health. He needs something to do right away. I feel bad for him because he’s been keeping himself alive through all that hoping to be well enough that he can use his potential to make a difference in the world. He has been suffering a lot hoping for an opportunity to do something.

    I cannot be sure he has MTHFR, but it looks to me like there is reason to investigate it. I don’t have much money, and he’s broke, but I can afford something like 150$ to give him for some kind of treatment. I might be able to afford a bit more than but I live on a budget so I can’t go too crazy – and I am paying to treat my own health issues (I’m not insured, and I just found out I have MTHFR, complete with some secondary conditions to pay for – but I’m feeling normal already, so I want him to have the same improvement).

    What I’m hoping for is: I saw a comment where you said sometimes you like to forego expensive diagnostic tests and just see whether vitamins will work. Neither of us has money for tests, but I do not know what would be safe to try. I know this is more complicated than throwing a vitamin at it, but I do not know the difference between what is a safe thing to try and what is not. I can’t advise him what to take, and he doesn’t know.

    So what we would like to know is, is there something appropriate he can try for the amount of money I have, that may get him some releif? Maybe if he becomes functional he can get a job or something and pay for all the tests then.

    Here are his symptoms, the most complete list we could make:

    Yellowish skin, inconclusive tests for jaundice (months ago).
    Past manic episodes.
    Allergies, 100+ of them, has had them since childhood.
    Has had depression / anxiety for 20 years
    Intermittent body pain, hard to localize
    Insomnia & excessive sleeping (alternating, frequent waking, lack of REM)
    Suspected autism spectrum (Not verified, but I have asked him to take the autism quotient test at wired.com)
    Past seizures or ministrokes, a few of them, years ago
    Inability to encode new information, difficulty comprehending new concepts, serious memory problems — but he has a tested IQ in the highly gifted range
    Frequent thoughts of death, dying or suicide and fear of death
    Migraines
    Appetite loss, wasting of muscle
    Severe fatigue, sometimes catatonic
    Slow thinking, speaking, body movements (slow reflexes, lack of coordination, stumbling)
    General malaise
    Addicted to cigarettes
    Constipation
    Tarry, black stool, even with fiber added – has had it for years (has not been tested)
    Pain when defecating
    Feelings of futility
    Irritability / frustration, even over small matters
    Anhedonia
    Sex drive almost completely gone
    Agitation / restlessness
    Irritability / angry outbursts due to low tolerance for social interaction
    Inability to concentrate
    Feelings of worthlessness or guilt
    Crying spells
    Nightmares

    Neither of us is sure this list is good enough, but if you want to ask questions, he will answer them.

    #1851 Reply

    suddenly_feeling_normal

    In case it is useful, he completed an online autism test (aq.server8.org) – I originally sent him to the one on Wired.com but it wasn\’t working for him. I couldn\’t verify the credibility of this other test but here is his score:

    41 (in the \”Very High\” range. The test says most people with HF or AS score 35. The max score for the test is 50.

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