Finding Help for Complex Case

Welcome to Connect, @rdwhite629 . I understand your frustration in your daughter feeling like she is not being heard by her doctors. Could you be more specific about what you are looking for? What types of complex health issues are involved and what reactions is she having for the treatments she did get from conventional medical doctors? Does she have a diagnosis of a condition?

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.

@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?

Thanks Jennifer, this sounds like an interesting path to pursue and probably should be part of a comprehensive investigation into the cause of the issues my daughter is having. Is there someone or some institution that could incorporate this into an overall strategy to investigate the root cause of the issues she is having? My hope is to find a doctor or clinic that can take her on as a patient and coordinate an overall strategy to find the cause and develop a course of treatment where this would be one areas to investigate. I think I am looking for a "Dr. House" if someone like that or a clinic like that exists.

Hi RDwhite, It sounds like you're talking about the Mayo Clinic model of care. While not local to you in NJ, you may consider submitting an appointment request to Mayo Clinic. Rather than a single "Dr. House" you will have a team of doctors from multiple disciplines to help get to the root of the problem. Mayo Clinic is located in Arizona, Florida and Minnesota. It may be possible to get a diagnosis and treatment plan at Mayo Clinic and then to continue care locally with guidance from Mayo Clinic.

Here is more information about how to request an appointment or to submit a physician referral. http://mayocl.in/1mtmR63

Thanks. I will review with my daughter.

Let me know either of you has questions.

@rdwhite629 Hey there, I'm Rachel, it's nice to meet you. You sound like my mom if she were to post about me...protective, concerned and caring.

I'm struck by your daughter having complex health issues and normal treatment not working. You mention her trips to the hospital, and the diagnoses of CRPS after failed ankle surgery, and the fact that you are looking for a group of doctors to bring this all together with some answers and a plan to move forward. I experienced what sounds to be quite similar to your daughter.

May I please ask you and your daughter to watch a video by Mayo Clinic's Dr. Sletten to see if any of it resonates?
https://youtu.be/8defN4iIbho
Educating yourself is the best proactive thing you can do. Perhaps it will miss the mark, but there is nothing to lose. Will you let me know your thoughts?

Thanks so much Rachel. Is there another link to the video? This comes up a "private".

@rdwhite629 My apologies, it appears the video has recently been updated to include a wider spectrum of conditions, including post Covid long haul. Here is the current video from Dr. Sletten: