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Hi Jennifer, we are still looking for answers about her health conditions. We know some things but so much is still unknown. We know that there is a deletion at 6Q25.2 (SYNE1). She was diagnosed with CRPS following a failed ankle surgery that led to a MRSA infection. She does not respond to oral medications normally. She was treated for the CRPS with a biophospate but had a reaction that we can find no other accounts of. She is beginning to have headaches that are completely debilitating. She has always had periodic migraines but this is something altogether different. She doesn't handle steroids well. Prescriptions pain medications don't help. It is this lack of normal response to drugs that make hospital visits terrifying. They simply ignore what she tells them doesn't work and they try it anyway because that is what they know and just don't believe what she tells them because it is so odd. She experiences Mast Cell Activation Syndrome symptoms but they have not done a blood draw at a time where they could confirm this is the case. She is in the process of putting together a medical history and more details on all of the things she has gone through but given her condition this is taking some time to do and I just don't know everything. I think she needs a "Doctor House" if you know what I mean to look deep into the issues she is having and the full picture of her background.
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@rdwhite629 I have found that environmental medicine doctors (or functional medicine) have been very helpful to me. Often they are also allergists, and what is different is that they test individual components like individual kinds of trees, etc, and they put together a customized mixture that addresses and treats my specific allergies rather than a blanket approach. They focus on prevention rather than treating symptoms. This field of medicine was started by Dr. Rea in Texas and they treat more unusual things like immune responses from surgical implants, etc. You can find their website with lots of information at https://www.ehcd.com/
There is also a provider search at the American Academy of Environmental Medicine at https://www.aaemonline.org/.
You mentioned a failed ankle surgery and steroids. Are there surgical plates or implants on her ankle? That kind of caught my attention since I had surgery for an ankle fracture and I had titanium surgical plates that caused pain. I was also having chronic hives for months which they couldn't say were caused by the titanium. I had the surgical plates removed after a year of healing. I know mast cells are involved in an allergic reaction, so it is worth it to question what may be triggering their activation if this keeps happening.
I also know that metals have caused health issues for me when they are in my body. I had old dental work with root canals and crowns. Root canals are filled with gutta percha, a substance that contains cadmium which is a heavy metal. When a root canal fails, that material and an infection from within the tooth can move into the jaw bone. That is what happened to me, and I chose to get Zironia dental implants to replace those teeth. There is no metal in them. They are ceramic and the lab made teeth attached to the implants are of the same material..
It's interesting that my asthma improved dramatically when all the metal was removed from my body. I had 3 months metal free until I broke my ankle. Then with metal plates in my body, my asthma got a worse again. It improved again after the surgical plates were removed. My conclusion is my body doesn't like metals and my health is better without having metal replacement parts in my body.
Have you heard about this field of environmental medicine before?