The 12th Invest in ME Conference, Part 1
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DESPERATE: Are there any docs other than Lynch or Yasko that understand this

Discussion in 'Genetic Testing and SNPs' started by anxiousguy, Jul 26, 2015.

  1. anxiousguy

    anxiousguy

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    I first posted on this site a year and a half ago.
    http://forums.phoenixrising.me/index.php?threads/deplin-so-confused.27393/
    I have severe anxiety/ocd/depression/racing thoughts

    I would like to thank everyone for all of their help, especially @caledonia
    @Freddd @Critterina @Sherpa - I also appreciate your time

    I had gotten off anti depressants and started to learn about my health. I spent thousands on extensive tests and doctors. Therapy doesn't work and antidepressants don't work. I have tried tons of each for years. I started out being deeply cynical about Big Pharma and most drs, but naturopathy and holistic medicine hasn't helped me either. I don't know if anything can

    Then I heard about methylation. It is so complex that I went to see a doctor that I got off a MTHFR list. I don't know if it is "ethical" to name him or not, but despite being on that list and having a methylation video on youtube, he didn't seem to know much about methylation. He didn't even give me any b12 other than what was in a b complex that he gave me. No sublinigual and no shots.

    Later I called Tim Jackson. He seemed knowledgable, but he wasn't a good fit. Again, I don't want to disparage anyone in this forum.

    I need a doctor that I can work with that is knowledgable. I can't afford to spend tons of money on docs that aren't any more knowledgable than me or people on this forum. I can't afford enless supplements and tests. I also get very anxious when it turns into "you can't eat anything (gluten, dairy, animal proteins, sulfur foods, etc etc)" "you need these 30 tests and take these 50 pills"

    The other complication is that I live in NY .... the land of tests not available. I don't know how to get around this.

    Yasko and Ben Lynch don't do consults. Sterling Hill no longer does as of earlier this year. Who else knows their stuff? I searched mthfr.net , mthfrsupport and seeking health. I found docs and checked their websites etc to try and find the "best"

    There seems to be no consensus on what b12 I should take (methyl/adeno/hydroxy). There are so many contradictions. Some say adeno is good and hydroxy is bad. I don't even know which methylfolate to take. Then there is the matter of cofactors and minerals and other vitamins and electrolytes etc.....

    I know that I should avoid folic acid (strange that Yasko's all in one has it in it). I don't know how strict that I have to be about avoiding it. I don't go out of my way to take it, but it is in everything!!!! It is hard enough to have lifelong depression without having to avoid pizza and bread and pasta and rice completely.

    I also hear people saying to take niacin (not just when having a reaction), which I don't understand as it seems to do the opposite of what I want. A post that someone posted in another thread: "I just had doctor try and put me on Niacin - Dear God ! Just one dose of Niacin is enough to send me into the hospital. Niacin is a Methyl Sponge! Niacin also plays a role in the COMT SNP - and it can dump lithium. Then if a Doctor puts you on L-Dopa supplements - with COMT gene he better have BH4 onboard."
    http://forum.jackkruse.com/index.ph...s-your-doctors-knowledge-of-methylation.5152/

    That kind of stuff makes me soooo nervous and anxious and overwhelmed

    I KNOW THAT IT IS NOT ALL ABOUT MTHFR AND THAT OTHER SNPS ARE IMPORTANT. I KNOW THAT BH4 HAS TO BE AN ISSUE AND I KNOW THAT I HAVE AWFUL GENES AS FAR AS MENTAL HEALTH.
     
  2. anxiousguy

    anxiousguy

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    I don't know why my snps don't pop up in my signature

    +/+ COMT V158M , COMT H62H , MAO-A R297R , MTHFR a1298C

    +/- VDR Bsm , VDR Taq , ACAT1-02 , MTRR A66G , AHCY-01 , ACHY-19 , CBS 699T

    no call MTRR H595Y , MTRR R415T , BHMT-04 , AHCY-02 , CBS N212N , SHMT1 C1420T

    Detox
    +/-
    CYP1A2 164A>C , CYP1B1 R48G , CYP2D6 S486T , CYP2D6 2850C>T , SOD2 A16V , NAT2 I114T , NAT2 K268R
    present: GSTT1
     
  3. Mary

    Mary Senior Member

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    @anxiousguy - This has some links for integrative medicine doctors: http://acam.site-ym.com/search/custom.asp?id=1758

    I can't recommend anyone by name.

    Have you ever tried 5-htp? It helps many people with depression who can't tolerate prescription ADs.

    I take niacin at night - it helps with sleep, it stimulates GABA receptors, and during the day I take methylfolate (Metafolin) and methylcobalamin. Niacin can be useful, though some people do react badly to it. But it helps lots of others. Because you are so anxious, you might really need it. Hopefully you can find a doctor on one of the links above who can help you.

    Also, take a look this thread - it might be helpful: http://forums.phoenixrising.me/inde...nxiety-symptoms-with-three-supplements.18369/

    FWIW, I think most of us have had to eliminate things like wheat and dairy. If you've been told you need to do that, you should try it - it might make you feel better. It's not fair, but none of this is, and I will do anything I can to get my health back (like just about everyone else here).
     
  4. anxiousguy

    anxiousguy

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    Thanks @Mary

    I am a little hesitant to completely remove wheat and dairy. I will try at some point. I know that it doesn't mean anything, but I've had a bunch of tests as far as food allergies etc and wheat and dairy don't show up.

    I've read that thread many times

    I have no problems sleeping.

    I think my combination of snps is a big problem as far as mental health. My Dad had these problems too, so I am sure that behavior , exposure and snps are all part of the picture
     
  5. helen1

    helen1 Senior Member

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  6. anxiousguy

    anxiousguy

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  7. minkeygirl

    minkeygirl But I Look So Good.

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    A lot of naturopaths understand methylation. Mine does. And many are into Autism and follow Yasko's ideas.

    I just googled and found mine very close by.
     
  8. ahmo

    ahmo Senior Member

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    William Walsh has trained doctors. You might find someone on his site. Also, Dr. Rostenberg. Not sure if he does consults, his site is here:
    http://beyondmthfr.com/tag/mthfr/
     
  9. anxiousguy

    anxiousguy

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    @minkeygirl Lots understand it in a general sense (as do I) but I am looking for "experts"

    @ahmo Thank you as always I'll look into it!!
     
  10. minkeygirl

    minkeygirl But I Look So Good.

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    My doctor requested I got MTHFR testing. When I said I got 23andMe she was thrilled and scoured them. She has more than a passing knowledge.
     
  11. anxiousguy

    anxiousguy

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    @Mary
    @caledonia
    @Critterina
    @helen1
    @ahmo
    @minkeygirl


    I am trying to find a doc.

    I just called in to Nancy Mullan's call in show. I gave her a brief history and she said that she would focus on the gut and then on methylation.

    I told her that I was so overwhelmed with this "take all these tests, all these supplements and spend 5-10k a year on all of this". I asked her if there was any way of being healthy without being that extreme. She said NO! The problem is that I have no idea how much all of this stuff will cost or if it will even work. She also said I'd have to be on a strict diet. It makes me even anxious to not be able to eat anything and have to do all of this other stuff.

    the other wrinkle is testing in NY. I called Genova about the GI effects panel (is that the standard for gut tests?) and they couldn't tell me how much it costs. A doctor would have to order it. I don't know how to get these tests. It was suggested getting it sent to someone out of state and mailing from across the border in CT. The problem is that the doctor would need to outside of NY.

    She also wanted me to run my stuff through knowyourgenetics and see if I had MTHFR 03 (not familiar with that). All these docs want something different. One wants mthfrsupport app, another something else etc.

    I don't know what to do
     
  12. Mary

    Mary Senior Member

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    @anxiousguy - did you look at the link I posted above? http://www.anh-usa.org/other-good-places-to-find-an-integrative-doctor/

    It can help you find an integrative doc in your area.

    There is no easy way to get better that I know of. All of us have had to try many many different things, cut out various foods, etc. So instead of getting anxious about that, just try accepting it. It's the way it is. If there was an easy answer, we'd all be well. I hate having to take all the supplements I do; however, they do help me, so I just suck it up - no use complaining (except once in awhile when I feel like it - but in the end it just saps precious energy).
     
    ahmo likes this.
  13. alice111

    alice111 Senior Member

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    Dr mullan is basically yaskos "side kick" I have been consulting with her for the past two years and she has been quite helpful, and is knowledgable in methylation and yasko protocol. She is not cheap, but she does phone consults, so you don't have to travel to see Her! Feel free to PM me if u have questions :)
     
  14. caledonia

    caledonia

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    I'll send you an email.
     
    ahmo likes this.
  15. ahmo

    ahmo Senior Member

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    @anxiousguy This is not going to be easy. sorry to say. . I am healthy other than my mental "issues".
    Mental issues have been at the forefront of my issues. In fact, when I evaluate my current level of wellness, it's all about having tamed my nervous system. Which is what's happened over the course of 3 years, with changes to diet, detox, and getting the proper vitamins, minerals, antioxidants, fatty acids.

    You and I have MAO++...I've written a blog entry about FMN form of B2. It seems it might be especially helpful for those of us w/ this snp. It's unlikely that a single thing like this will change your life, but then again, stranger things have happened.

    I had very few tests. I did use Genova for toxic metals and, having chosen the incorrect test , found I had SIBO (when Yasko's forum had suggested organic acids test). I paid $100 for 23andme. But in general, pathology tests have given me very little help. This might be very different if you have a methylation doctor, I don't know. Because I had no dr to turn to, and no job to go to, I spent the hours I needed to follow symptoms and forums and micromanage my biochemistry.

    Gluten might not be a problem for you, your signature says Very little processed food/dairy/gluten. Sometimes very little is all it takes to act as a poison. Quitting gluten decreased my inflamed nervous system by about 50%, within 3 days. A limited diet is only one of the things I've had to adapt to.

    Mary has it exactly right above, it's all trial and error, and commitment to getting out of a dire state. Having been overwhelmed by an inflamed nervous system, it's been very clear for me that addressing biochemical imbalances has given me a quality of life better than that I had before ME.

    Here's a link to a questionnaire for pyroluria. When I scored just high enough to be in this category, I ordered the supps. Within 5 days of beginning them, my inner state had shifted dramatically. Again, no lab tests, no MD help. :hug:
     
    Mary likes this.
  16. anxiousguy

    anxiousguy

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    @ahmo

    I took that questionnaire a couple of times and it pointed to 0. I had extremely low copper on one test. My doc had me on p5p, zinc, etc at one point

    How did you know that quitting gluten decreased your inflamed nervous system?

    That is the thing with tests, some docs say that certain test say you have a high something and that could mean that it is really low or not getting absorbed and vice versa.

    Sorry if this post was incoherent, I just worked an 11 hour day and I'm out of it

    Thank you again
     
  17. ahmo

    ahmo Senior Member

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    Stumbling upon a link that led to a description of GAPS diet came at a time when this was my last possible hope. My nervous system was so over active, I was so reactive to all stimulus, that life had become unbearable. I'd been a vegetarian for decades, the idea of meat and meat fat and broth freaked me out. But I was choiceless. Between 3 and 5 days later, everything had calmed by 50%. Within 2 weeks the remaining connecticv tissue contractures in my palms melted. In the 3.5 years since then I've gone on to find the necessary vitamins, minerals, aminos, fatty acids, and detox. I am not the same person. I'm unable to be much in the world, but my quality of life now compared to then is the difference between light and pitch black.

    Exactly. That;s why I mention that I've come this far with very few. It's not that I think this is the correct way for anyone else to proceed, but even my GP now aknowledges that the tests have shown us nothing useful.

    :eek::cautious::nervous: Please be careful. :hug:
     

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