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looneymom

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About looneymom

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    http://www.survivingpots.com

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  • Gender
    Female
  • Interests
    I love to cook and read mystery books. I also play the piano and stay active with my church as much as possible. Without faith in God, I know this medical journey with my son would have been impossible. He has provided the comfort and strength needed.

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  1. I was looking at your symptoms. Have you been checked for deficiencies in B vitamins such as B-12 or folate? Methylation problems can cause energy, insomnia, and severe brain fog issues. You might consider doing the 23 and Me testing but first find a doctor to help interpret the results. Dr. Amy Yasko has written a book called Autism Pathways to healing. You can read this book free on her website. She uses a test similar to the 23 and me testing. She has a website that will accept the 23 and me test results and it will give you a free report on what supplements could support your methylation
  2. Hi Sue My son and I have both been on 3 mg of LDN for almost a year. My son had no troubles with sleep but I did. It only lasted a week and then I started sleeping through the night. It does work with the immune system and helps with autoimmune diseases. It has not made POTS symptoms worse for him. After being on it for 8 weeks, my son had no more chronic pain issues, no severe scalp pain or daily headache. He has been pain-free for a year. I started taking this medication last October for pain. I learned that I had a high ANA and high inflammation markers. Recently I found out that I ha
  3. Here is another article on the grant. http://www.oudaily.com/news/ou-health-sciences-center-gets-grant-for-research-on-nervous/article_ac86c51a-b925-11e4-a676-534bd25bda8e.html#.VPPsAruSlYI.facebook
  4. Thanks for sharing this information. I wish I had some of it now to try with Tyler. Has anyone in the USA ordered this product?
  5. Hi Bella, My son had a tunnel central port put in 3 weeks ago. So far so good. He is not having any trouble. I wish you the best with your new port.
  6. For my son, our cardiologist wrote the prescription. My son's condition got worse after he had the flu in January of 2013. He went to physical therapy for 6 months and was unable to regain his strength and mobility. With the testing and documentation from our physical therapist, our insurance paid on the wheelchair. We had to have proof of why he needed the wheel chair. He has one with powered wheels. My son does not have the strenght to push a manual wheelchair. The testing for his antineuronal antibodies was done last year after he had the flu. Not many doctors will test for these things un
  7. Just make sure you can get the wheel chair to fit in your vehicle. Measure the doors in your house. Tyler has a wheelchair with powered wheels. The chair breaks down to fit into our jeep. It does not recline but it meets his needs for right now.
  8. Tyler has a wheelchair with the power wheels. He was using an old stand by for a year but just did not have the strength to push himself very far. He would wear himself out and then someone else would have to push the chair for him. He is thankful for the powered wheelchair but looks forward to being able to walk again if that's possible. Our cardiologist wrote the prescription and then our physical therpist had to get the approval from the insurance. It took about 4 months before the insurance gave approval but it was worth the wait. Tyler has not walked since January 2013. However, even whe
  9. I think the only true answer to your question is only go to be answered by research. Until then we are just going to have to keep digging for our underlycauses. This is frustrating to say the least. When Tyler was first diagnosied with POTS, my husband and I really thought it was much more than POTS becuase of an article that we read on POTS. Wish I could find it but it stated that if your POTS responded to the medications and exercise, then you would be more likely to recover more quickly. This makes sense but some of us on this forum have some really complicated cases with POTS. I really th
  10. This illness has made my son more humble and mentally strong. If he gets over this, he is going to be a great husband and family man. Having a spouse that is understanding is so helpful. So glad that you have that support Gjensen. POTS is more common in females than males. However, I wonder which one recovers more quickly? I have not researched that one.
  11. Here is an article on Taurine. Taking Taurine may help tinnitus. Tyler takes it to help balance his electrolytes. https://www.lef.org/magazine/mag2013/jun2013_The-Forgotten-Longevity-Benefits-of-Taurine_01.htm
  12. I thought this was a very interesting post about B-1 and that it needed to be bumped up. Rachel
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