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Talk to me about MTHFR and Lyme


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Our Ped offered to test for MTHFR, but said it can interfere with getting life insurance later. Thoughts? What test did you use when you checked for it?

 

Lyme... we haven't tested for that yet either. Again, which test? Did insurance cover these tests or is it typically OOP?

 

What are the treatment protocols if found to have these?

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Here's a recent NPR story on this issue: http://www.npr.org/blogs/health/2013/01/17/169634045/some-types-of-insurance-can-discriminate-based-on-genes

 

I don't know that MTHFR specifically would alter your life insurance availability, as it mostly considered just one indicator of heart disease risk and you would likely be disclosing that risk by indicating a family history of related ailments. Plus, by the time life insurance becomes a major consideration in our lives - mid-life - you may already be on blood pressure medication and the life insurance co. would know that too.

 

Not that this isn't a valid consideration when deciding to do genetic testing. But you also need to weigh the value of having decades to do something about it early in life, and the impact it can have on mental health for some of our Pans kids, like my DD.

 

I used 23andMe and paid OOP, no insurance involvement. ($99 for first kit, $79 for additional kits if you order at the same time).

 

I used Igenex to test for Lyme and did submit a claim thru insurance, got reimbursed 60%. But that was ok in my case, as my DS was then diagnosed with Lyme and his LLMD used Lyme CPT codes for our visits, which were also covered by insurance at 60% as the LLMD is out-of-network.

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When we did the 23andme test, we did so as anonymously as possible. It was paid for by a distant family member, it was shipped to a friends address, and I registered it under an anonymous name. If an insurance company wants the information, of course they can get it if they try hard enough, but I wanted to make it as difficult as possible for now since it is all predictions.

 

As LLM stated, we will have to disclose any known risks or known conditions when the time comes. I see no reason to make my kiddos life any more difficult than necessary. She already would never qualify for life insurance anyway, but I see no reason to make getting medical any harder than it already is.

Edited by Mayzoo
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I'm not seeing MTHFR on the 23andMe website?

 

Do you feel like the test was worth it? Did it give accurate results?

 

 

It seems to be very accurate in my kiddos case. They did cover MTHFR variations. Kiddo has one :( BUT only one :). I would say it was worth it. There is a great documentary about the pluses and minuses of doing genetic testing, and it covers 23andme pretty well. I can find the link if you have not seen it yet.

 

I think it was worth it medially, and it has a lot of simply interesting information as well. I do not regret getting it, but then again, kiddo showed no serious disease traits either *whew*.

Edited by Mayzoo
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if you do go for MTHFR - read your insurance policy carefully and discuss insurance coverage with your doc -- mine and ds's doc ordered it without blinking an eye when they were doing other blood work on us simply b/c I asked. I am still having trouble with insurance(a year later) -- mainly b/c they are inept -- but. . .

 

quest charges $468 -- if insurance denies -- that is the cost -- be aware of what you are doing -- even without 23andme, you can get MTHFR from some labs for somewhere around $120, I think. insurance negotiated rate is usually somewhere around 10% --- so if they pay, they would pay around $50.

 

ds is neg on all, I have A1298C and am still having trouble with what to do about that mutation only. we will likely do 23andme soon.

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I'm not seeing MTHFR on the 23andMe website?

 

Do you feel like the test was worth it? Did it give accurate results?

 

They do test it - 59 snps actually. But Yasko only tags 2 snps as indicators of methylation issues.

 

I believe (tho am not certain) that Labcorp is the lab that does 23andMe's testing. But whatever lab they use, it is CLIA certified. My kids' results matched the results we got from Quest. When you read stories about accuracy of genetic test companies, most of the anecdotes I see are in the vein of "they said I likely had blue eyes but my eyes are green" or "they said I had curly hair but mine is straight". Some of the "fun" analysis 23andMe gives you are probabilities based on a number of genes. But I've not read of anyone saying "Quest said I was positive for MTHFR C677T and 23andMe didn't". Doesn't mean it isn't possible, but that isn't the sort of inaccuracy I've read about.

 

For me, it was well worth it for many reasons. You will not get everything you need from just using 23andMe. Their analysis is fun and somewhat informative but the real value is in downloading your raw data and 1. running it thru a free app called Genetic Genie (she asks for a $10 donation that is well worth it) that gives you a Yasko-like methylation analysis and 2. saving your date onto a thumb drive and sticking in a safe deposit box as well as having a copy on your PC so that as research comes out on various genes, you'll always have the raw data to check for your own susceptibilities.

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