What is the benefit of genetic testing?

[JoyBop]

I have spoken with a few PANDAS specialists as well as some pediatric neurologists that have no experience with PANDAS and they all mention genetic testing. Can those of you who have had this done tell me what the benefit is? Is there any specific treatment that can come out of genetic testing? We know that there are autoimmune issues on both sides of our family. I am hesitant to pay thousands of dollars for information that will not result in treatment.

 

Who has done it, what did it cost, and how did it help?

 

If you refuse it, do the doctors push the issue?

 

Thanks in advance.

[Guest]

Great question!! Mine wants to do this now too.

[Mayzoo]

We paid the $99.00 to get the 23andme test run. We do not have the results yet. I am research nut, and I am frustrated always behind the 8 ball with her diagnosis'. I miss symptoms that are related to conditions that I am unaware she has. If I have an idea what she is predisposed to, I can research those conditions and maybe I will not miss the early symptoms so we can get treatment faster.

 

Also, I have been told you can tell that some supplements will help or will not (not absolute, but a good guide) help based on the testing. I already have found she has the A1298C mutation, and that may explain the strawberry tongue she has. With supplementation, I can figure out if the tongue issue is methyl related or something else.

Edited May 15, 2013 by Mayzoo

[sf_mom]

Here is a good episode on Genetic Testing done by NOVA. Specifically covers 23andMe testing. I highly recommend watching it as it really maps out some of the pluses and minuses of testing.

 

http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html

[LNN]

The link SFMom posted was informative and balanced but what it doesn't do is tell you whether you're the kind of person who will benefit from this information. For me, it's been incredibly helpful. But it is very complicated and has taken me a year of wading through videos and blogs and books and research papers to feel I have a reasonable (but still incomplete) handle on things.

 

For those dealing with digestive issues, neurotransmitter issues, fatigue, metals, chronic infection - I think understanding Amy Yasko's methylation hypothesis can really help support the body and tip the scales in favor of healing. But it isn't a silver bullet. It won't "cure" Pandas or Pans. What it has done is allowed me to evaluate supplements and diet and detox strategies and work with, not against, my kids genetic issues.

 

Not everyone wants to know all the information provided by a company like 23andMe. There are privacy issues you need to understand and be educated about. But if you're ok with these things, and you're willing to do your own research, with or without a doctor's guidance, then it may be a good tool for you.

 

Just FYI - the 23andMe test costs $99 for the first family member, 20% discount on additional kits if you order them at the same time. It is not thousands of dollars. The lab that does the 23andMe tests is CLIA certified and I believe it's affiliated with or is Labcorp. This test gives you 990,000 snps ("snips") of data - sometimes multiple snps for one gene. It is not the same test that Dr T orders from Courtagen, which is strictly looking at mitochondrial DNA. (23andMe includes mitochondrial DNA but I don't know if it tests for the same snps that Courtagen looks at).

 

Using results from 23andMe, my daughter - who suffered from severe mood swings - is rock steady thanks to some changes in supplements/vitamins and changes in diet (much less protein). My son, who's battled lyme and Pandas for 4 yrs, is now a very good place as well. I just got my results yesterday and will also be making some changes. DH's data is being analyzed now. Took about 7 weeks for results.

 

Is it worth doing? It's a personal decision and depends on how much work you're able to put into understanding/acting on the results and what sort of medical support you have. For me, it's by far the best investment I've made out of the $50K we've spent on medical in the past few years. Ophelia - I was actually going to suggest you look into 23andMe and a facebook support group called MTHFR Support as well as the writings of Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/on CF/ME and Amy Yasko- with your symptoms, you may find some real insights that could help.

[Guest]

Dr. T ordered 2 tests from Courtagen and my insurance denied covering it. When I called the company one test was $3,000 and the other was $16,000.

I wasn't sure if I needed to proceed with appeals or not.

 

Thanks @LLM . Some of my friends are doing methylation stuff right now for CFS but I don't know much about it. So thanks for resources.

[JoyBop]

I was told by Dr. Ts office that the saliva kit is $200 but the lab costs thousands if insurance does not cover. I know my insurance will not cover but my doctors wrote letters today to see if they will cover an out of network provider so that we may get reimbursed for seeing Dr T.

Has anyone been successful with getting reimbursed for an out of state doctor

[lfran]

When dr t ordered the genetic courtagen tests for us they had a deal where if I paid $100 for each I the two tests ahead of time, courtagen would take the risk of not getting paid if insurance didn't cover it. So it's worth calling and asking about

[lfran]

Also my insurance will cover an out of state doctor but only if I go there in person. They will not cover phone consultations.

[Guest]

When dr t ordered the genetic courtagen tests for us they had a deal where if I paid $100 for each I the two tests ahead of time, courtagen would take the risk of not getting paid if insurance didn't cover it. So it's worth calling and asking about

They didn't tell me about that deal and it's already been reviewed and denied by my insurance company.

I could just order the 23andme..

[Guest]

So basically Dr. T's office failed to mention I could just pay 200.00 up front and now I'm being told 19,000. Plus they know I'm on disability and bed-bound. Brilliant. Just brilliant.

[JoyBop]

I was told that the $200 upfront was just the cost of the "kit". Actually, there are two different kits for $99 each if I understood correctly. The cost of the lab work is dependent on your insurance coverage. Of course, you could clear coverage with your insurance company prior to paying for the kits. I am still working on getting coverage to see the doctor in the first place. I will pay for it if I have to, but its worth a try. Not sure I would do any genetic testing at this point, but we are new to all of this. Im sure if we are still struggling years later we would try just about anything.

[lfran]

What happened to us was that I paid $99 for each kit. I spoke with a Courtagen representative who told me that that was the extent of my obligation.

 

They did try to bill insurance, I think Blue Cross paid a very small amount, and I have not been further invoiced.

 

Now, this was only a couple of months ago, so a surprise invoice may come from Courtagen, but that is not what I was promised by the Courtagen rep.

 

You may want to see if you can still get it this way, if possible.

 

On the other hand, it only showed a handful of SNPs, and the 23andme shows thousands and thousands. Also, the Courtagen test did not reveal anything particularly useful for us.

[Guest]

Just an FYI courtagen no longer offers the 100.00 $ deal up front for tests. The guy told me they were losing thousands so insurance has to cover it or you have to pay out of pocket. Nice guy though.

 

I went ahead and ordered the other one ya'll have mentioned, thanks.

[Dedee]

I have done the 23andme for all 3 of my children. What it did for us was to help us determine what supplements to use that were actually beneficial instead of guessing based on what had helped others. What helps one persons child is definitely not what will help my child. Many of the things I was giving my kids was completely wrong based on their profile. I knew my son had issues with moods, but now I know that some of the supplements I was giving him were actually working against him. So for us, we can put our money into the correct supplements instead of guessing. For $99, it was totally worth it.

 

Dedee