I tested my children first since they had autism, which according to 15 specialists was irreversible.
I had heard about methylation pathway stuff from my neighbor, who was also a family medicine doctor. His son & wife were being treated by their practitioner using the methylation pathway panel and both were doing great! His wife had CFS and his son was high functinng autism (not Aspergers, autism) and both are healthy and "neurotypical now"
Then I went to one of my dad's cardiologist appts with him and somehow the comment of autism came up to which this cardiologist said "You should see this practitioner, she's a visionary and a genius and can help your children" so it dawned on me that this wasn't just some kind of new age quackery (I'm an ICU nurse so originally trained in allopathic medicine).
I had no real expectations but hoped that both doctors were right. As time went by, I would run into people who had ALS, or Parkinson's or MS and had seen this practitioner and were either healed or well on their way there. It gave me more hope. I couldn't understand all the scientific and biochemistry terms so had to study alott! But eventually, it got better and our practitioner walked us through it. Turns out, she was pulled into this the same way everyone else was since her son had PANDAS, a strep related brain disorder but she also had a close friend with MS. She has since fully recovered both and now her friend works with her.
We had some basic chemistry and complicated tests that our practitioner used to ruled out an Inborn error of metabolism (something no other doctor even bothered to do once autism was given as the umbrella term). She found a mitochondrial disorder in my daughter and we used some of the same supplements for both kids. Where my daughter really improved, my son had only minor improvements and this is where the genes came in. He has both MTHFRs, the CBS c699t, SHMT, MTR/MTRR, COMT ++ and NOS as well as some other minor players. We started ticking them off in the order she felt mattered most. Like Yasko, she felt they mattered but the SHMT and CBS mattered most.
It wasn't an overnight success but after 3 months he was looking us in the eyes and talking, TALKING! To us. Now he wasn't "normal" but he also wasn't miserable to be with and didn't tantrum all day and would communcate instead of scream.
At 6-7 months he was talking, telling me he loved me! And able to attend school with an aid. He could do some of the work but had so much trouble in classes and never made any friends. He still stimmed alott by flapping & jumping.
At 12 months he was very lucid, alert, communicated well, was exceeding teachers expectations. He had a best friend and was jumping into sports games that started up at lunch (A HUGE STEP!)
At 18 months he stopped stimming, could pass for normal, and was more like an ADHD kid.
At 2 years he was fully "normal" with varied interests, good communication with peers and adults, and no odd stims.
My daughter did fantastically as well but hers being less severe, were more gradual.
Long story short, I was crumbling under the stress of all of this and working full time and overtime shifts in the ICU to pay for all this stuff. I was constantly exhausted and depressed and got the flu one fine day and sometime later, found myself bedridden and unable to work. I just didn't have the mental stamina anymore for methylation medicine and hoped for an easier way outta this mess. So I saw all the famous CFS docs in hopes that I could start a few things and be done with it. What amazing denial? I saw what this science did with my own eyes but just couldn't get the energy to figure myself out. Finally, I landed in the ICU myself, in a near coma and no one could figure it out. So my neighbor called my kid's doc and she came down immediately. Having the genes from both kids made her suggest different treatments which helped drastically! Then I got my testng done and had the full CBS, full MTHFR, NOS, and a grand total of 22/30 defects! I truly thank God for bringing her into our lives because she saved us all.
After 20 months on gene and biochemical therapy I am now 90-95% back to normal. In fact, friends and family say I'm better than I was since I'm stable, have less moodiness, and don't have the constant ups and downs I used to have. A friend of mine started a biomed group for adults (some older kids) and there are 30 of us at last count. We all started within a year of each other and even though there haven't been any overnight cures, every single person has made great strides. Many of us don't participate that much anymore since we are doing so well. There are 6 left who've only made 50% gains and are moving forward on the rest of their worst genes (the oldest members take longer).
Thats the reason I believe the genes work. I know there are more answers out there and they're sure to come but with researchers like Dr. James, Deth, Vank, and doctors willing to stand up for us, well, we'll get he rest of the way.
I've noticed some of you talk about usefulness. In your opinion, what does it mean that genetic testing is useful?
I also have a few other questions:
What made you decide to get tested?
What did you expect from the test results?
What has changed from before to after the gene test?
Mette