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Does Pandas/Lyme go in cycles?


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Momcap - like you, the whole methylation thing was a real Eureka moment for me too. But like all wow moments, I'm finding that the things I read early on and took verbatim now need to be re-read and looked at in terms of the personal experiences I now have. The heartfixer document is, for me, my go-to document, since it's far shorter and more direct than Yasko's writings. But it was written in '08 and a lot more is being learned every day as patients come back and say "yeah, but...." and science comes back with a better understanding of the inter-relationships between genes. So I now try to insert the words "may" "might" "consider" into my thinking instead of "will" "should" and "is".

 

For example, according to heartfixer, Yasko, MTHFRSupport and Rich Van K, my family members who are COMT+/-, CBS +/- and MTHFR C677T +/- "should" do better on hydroxyB12 rather than methylB12. According to the experts, methylB12 "should" make them overmethylated. Yet, when DH switched from methylB12 to hydroxyB12, he started feeling antsy, edgy, angry...for hours. He went back to methylB12 and feels good again. I had a similar experience when DD made the same switch, although it was harder to be sure because she couldn't articulate how she felt as well as DH.

 

What a person eats also changes what "should" be vs. what actually happens. If someone eats a diet his in xyz, their supplement needs may be different than a person with similar genetics but a different diet. Plus having a gene mutation doesn't mean that mutation is expressing itself.

 

So I now rely on heartfixer, yasko et all with the same level of "healthy caution" I take with my GPS. I rely on the general directions as I make my plans but I always rely on what my gut tells me when I actually get there and am sitting in a traffic jam or start driving into a dilapidated neighborhood I just know I shouldn't be driving through.

 

Nick12 - I'm a huge fan of 23andMe testing. But in fairness, do search the archives for some discussion in the privacy and insurance concerns of doing genetic testing. I did the testing anyway, but it's better to make the decision fully informed than to have misgivings after the fact. I think the concerns about losing insurance coverage won't come to be simply because the testing is becoming so widespread, but there are no guarantees in life and it's best to make decisions knowing both the pros and cons.

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Wow, can I ever relate to your post! My DS10 also cycles, and on top of the cycling he has a brutal October flare every year. He was also a nightmare on Augmentin - so bad that he should have been h

This last tip throws me a bit. The testing appears to be a kit that uses saliva that you do yourself. It appears that the results are sent directly to me. Although our world is flawed with privacy issues I am not sure how his genetic results would impact our insurance. It sounds like after getting the results, I would have to ( and possibly a LLMD) figure out the needed supplements and start low and slow.

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While current laws prohibit the use of genetic information in determining health insurance coverage, it does not prevent the use of genetic information in determining life insurance coverage. The fear is that if you know about a statistical risk to develop a disease, you could be denied life insurance or face a higher premium because you're considered "high risk". This is currently true if you say you're a smoker. Even if you don't currently have lung cancer, you're required to disclose what you know and your knowledge of your smoking habits put you into a higher risk/higher premium category. Knowing about a genetic risk could potentially be used against you in the same way.

 

Here's a good overview - make sure you read to the end. The insurance issue is discussed toward the bottom. http://flourishanyway.hubpages.com/hub/Should-I-Get-At-Home-Genetic-Testing

 

As I said, I still went ahead with the test because the prospect of being able to alter the kids' struggles today far outweighed my fears about life insurance in the future. In our case, I don't think any genetic red flags were raised that wouldn't have been raised simply with a re-telling of the family history or heart disease. But some people do have legitimate concerns that make them decide to not do genetic testing. So I only suggest you make the decision with eyes open.

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