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Any doctor/practitioner suggestions for genetic mutation support?

Discussion in 'Genetic Testing and SNPs' started by cbmtl, Apr 27, 2014.

  1. cbmtl

    cbmtl

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    Greetings,

    Though I would post to see if anyone has successfully worked with a doctor or skilled practitioner to resolve their mutations? I'm hopeful to specifically find someone who accepts insurance. Some of the practitioners I have found charge upwards of $350 per hour. Tough to put a pricetag on one's health, but if I can go through my insurance company, obviously that would be best.

    Thanks!
     
  2. Martial

    Martial Senior Member

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    I have found there is some good online things to look into that work well enough, personally I don't know what a doctor could tell me that I could not already find out from looking into sites like MTHFR.NET for example. There are plenty of study courses also available online and in the case of genetic mutation support and the like I find there is a lot of contridicted info based on different people. Yasko and Lynch disagree in various areas as one example.

    I don't know who is coverable by insurance but I hope you do find someone that will help you well! It just seems to me that it can be a pain to not only find someone who practices it, but also someone very knowledgeable as most don't seem to fully look into all the different modalities enough and keep up with recent research and findings.
     
    taniaaust1 and cbmtl like this.
  3. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    Where are you? I see a NP and she was $250 for the initial 1 hour appt and 1/2 hour followups are $125. Well worth the money. We are just getting started.
     
  4. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @Martial, I need a doctor because I find all this way too complicated for my one working brain cell. And after having tried it on my own and getting really sick, I'd rather have someone who is available to me all the time to guide me.
     
  5. Martial

    Martial Senior Member

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    Absolutely! I totally understand that, I was just saying things that had seemed to come up in my own time with it. Really though I should not have stated it in that way, cmbtl it would be good to have a doctor to work with and help especially if you are too sick or don't have the time to look into things yourself, nor should you have to or feel obligated to do so. Just be sure they have trusted certification and are well suited enough to work with you in things that are helpful in your own case.
     
    cbmtl and minkeygirl like this.
  6. cbmtl

    cbmtl

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    Big thanks martial for the response! I agree that there is plenty of SNP specific information to be found and employed. However, I think between the bad brain fog and complexity of my situation, that I would be better off with the support of a knowledgeable practitioner.

    For example, if someone has lyme, should they begin methylation first then lyme treatment? What about the co-infections? Also, I have a homozygous CBS mutation, which some, including Yasko, suggest should be dealt with first...in the hierarchy of mutations. Finally, how does one determine if they lyme and/or CFS?

    Be well
     
  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @cbmtl You haven't said where you are. Doctors will do Skype calls but they usually need the see the patient first.

    Testing will determine Lyme vs CFS. I think there is a Lyme link here that discusses the specific testing. If you find a doc, they can help you with that.
     
  8. Martial

    Martial Senior Member

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    If one has Lyme then CFS can be a symptom of Lyme especially with co infections, addressing methylation and co infection treatment is vital here.

    If you are homozygous then definitely start by addressing that first at least three months of treatment, alongside healing the gut and getting out excess sulfites and ammonia which is notorious in lyme. after you address those things then you should be able to start methylation treatment in conjunction with lyme treatment, in fact people respond pretty poorly to treatment and have major herxes if methylation is not worked with at the same time.. I.e. C667t mutations not being addressed during bacterial kill off can be very troublesome.

    Lyme is best tested by IgeneX labs, if you have not done any treatment I would suggest a blood smear to check for spirochetes instead of the antibodies test. People that are most sick do not have the antibodies in their blood to show on tests, this is because it is already being depleted dealing with the infection. A blood smear will look for the bacteria instead. Sadly though the testing for Lyme even by these standards is not always 100% accurate, though you cannot get a false positive from these tests sometimes a false negative can be common. It is much more diagnosed on clinical presentation then blood testing alone.

    If there is chronic fatigue and methylation issues without the involvement of lyme disease then it would still be vital to address the CBS mutations above all else, then slowly work in the rest of the methylation support.
     
  9. Aerose91

    Aerose91 Senior Member

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    Hey Martial

    What's your plan for removing excess sifted and ammonia? Based on my genetic results I think I have this problem
     
  10. musicchick581

    musicchick581 Senior Member

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    I can't find a doctor near me who specializes in this either. I'm stuck. Mine doesn't seem to be looking at the Snps, but only at the big picture.
     
  11. Aerose91

    Aerose91 Senior Member

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    I've recently been working with Dr Sheryl Leventhal from Hudson Valley functional medicine (lower new york)

    She is versed in methylation, snp's and 23andme results. She admits that she has only been doing it for a little over a year so she's not an expert but is still way more knowledgeable than any average person trying to figure it out.

    She was $400 for the first visit (2 hours) and I believe $150 for follow ups.

    She is also a big supporter of lipid replacement therapy, working closely with the Patricia Kane protocol.
     
  12. cbmtl

    cbmtl

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    Minkeygirl-

    I live in NJ, but don't want to limit myself geographically. Like you, I think my brain fog would make it difficult to determine which protocol is best and adhere to that protocol.
     
  13. musicchick581

    musicchick581 Senior Member

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    I'm in NJ too. Any ideas on good doctors in the area for methylation?
     
  14. Aerose91

    Aerose91 Senior Member

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    ^^^ if you guys are in northern NJ then your very close to Dr Leventhal. She is only about 5 miles west of the Tapanzee bridge. I am going back to see her in a couple weeks for my second visit to go over a plethora of tests (blood work, stool test, cell membrane integrity and 23andme), I'll let you know what I think of her knowledge after I go. Also, there's a nutritionist that works there who she said is way more well versed in methylation than her
     
  15. cbmtl

    cbmtl

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    Musicchick...maybe we can get a 2 for 1 deal. : )

    There are actually plenty of online resources with doctor/practitioner listing...and maybe that's the route that I ultimately pursue. I'm hopeful though to find a solution that doesn't require backing-up the Brink's truck. Many of us have compromised work situations that make affordable care critical. Of course, I don't want to be penny wise pound foolish either.

    Thoughts?
     
    Last edited: May 6, 2014
  16. cbmtl

    cbmtl

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    Aerose91 -

    Thank you for the doctor suggestion. I may reach out to Dr. Leventhal. I am actually in South Jersey -- closer to Philadelphia. I am currently working with an integrative medicine doctor, but don't get the sense that he understands SNPs well enough to treat. He did however recommend a practice in Upper Darby Pa -- Center for Bio-Individualized Medicine. Their website is: www.drjessarmine.com. I plan to reach out to them tomorrow and inquire about becoming a patient, insurance reimbursement, etc.

     
  17. musicchick581

    musicchick581 Senior Member

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    I'm in Central NJ by the shore but if she is good she might be worth a visit. Please let us know!

    cbmtl-lol! I couldn't find a doctor after looking online. There is a site with a list but they all seemed to be nutritionists.
     
  18. Kreiss

    Kreiss

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    Anyone knows a good genetics doctor in the San Francisco Bay Area.

    Thank you
     
  19. Aerose91

    Aerose91 Senior Member

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    I have no idea if he does genetics or not but Dr Romeo Mariano in Monterey is a pretty bad-ass doctor and outside the box thinker. You can call and ask if he does any of that. Just he forewarned he does like medicating which is the reason I stopped seeing him
     
  20. Aerose91

    Aerose91 Senior Member

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    Hey guys just wanted to give an update- I got all my results back and Dr Leventhal was the FIRST doctor to catch Lyme disease in me and also seems very well versed in methylation. I sent her my genetic genie results and she is reciting things to me exactly as I read them on heartfixer.com. Seems to know a lot about SNPs and supplements.
    She also does mycotoxin testing through Dr Shoemaker and cellular lipid testing through Dr Patricia Kane as well as a stool test to treat leaky gut. So far she is the most well versed in all this stuff that I have found, by far.
     
    Valentijn likes this.

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