Medical Advocate

I am just curious if anyone has worked along side a medical advocate. I have reached a point where I believe I need help keeping up with the research and choices I have to make each and every day. I am exhausted from all that goes into coping and dealing with chronic illness let alone the non stop research and trial and error treatments over the many years since being diagnosed. I have been in survival mode along with PTSD for a long time. I do not know the first thing about finding someone out there, but I do know that people provide these services and like anything else we deal with when dealing with Lyme and chronic illness, it will be another leap of faith. Any thoughts or experience would be appreciated. Thank you!

A medical advocate typically helps with the research and attends appointments with you. I think you can tailor the relationship to one's needs. In my case, I would like to say that I am interested in this Dr. or clinic or treatment, could you please assist with the research, scheduling, etc.? I know that Yolanda Foster hired someone (of course, that is a celebrity with financial means but she did this for the very same reason because she did not have the energy or support to follow thru on everything herself). In my preliminary research, I did find an RN a couple of states away from me that appeared to have excellent credentials and SAID she was Lyme literate in her bio. I have yet to contact her. I had to put it on the back burner as I needed to get a recent surgery behind me and I also have that nagging little voice telling me that this too will cost a lot of money. But it is worth the research to me and I was just curious if anyone had employed someone like this to be another set of eyes and ears. I understand your concern about ID Doctors, etc., thank you. Lyme literate or a good medical detective is what I would ultimately like to find if it is financially feasible and the right fit. I would still be in charge of my health care just with some needed support.

I haven’t done this but sounds great, at least in theory. There comes a point when the mental and emotional limits are surpassed and you start to fall through the cracks. I can only imagine how many unknown people are out there in that exact scenario. Sometimes I feel myself slipping there but I keep going through the motions hoping one day I will have the time, money, and mentality to do something different that will change everything.

I met a lady in line at Whole Foods Market, a year or two ago, who is a Nurse and does this type of work. She gave me her card, but I never pursued her services. If it's an affordable option, I think it could be a valuable service.

Not only to have someone at appointments to take notes and translate things in non-medical jargon, but to help keep a patient on track with their protocols, ensure there are no interactions with supplements and/or medications, doing periodic supplement/medication reviews to determine need, and keeping records in order.

And, perhaps, to make sure a provider doesn't give a patient a line of baloney. I think of it like taking a mechanic to the repair shop with me, when they tell me I need to spend $1,500 on a new Flux Capacitor.

Rather than pursuing a medical student, though, I might look for a retired Nurse or Doctor.

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Post Edited (The Dude Abides) : 4/9/2019 7:23:22 PM (GMT-6)

I love this idea, but I'm not sure it has caught on yet for Lyme. Some nursing homes, disability care facilities, and seniors centers have medical advocates, and I hope they become more mainstream. Like Lyme doulas! I did rape crisis work for years, and medical advocacy is a whole branch of most rape crisis centers. Medical advocates change the medical experience drastically, and I hope you find someone, even in a casual capacity (like a feisty neighbor) who can just commit to attending appointments and talking things through with you, even if they don't especially have expertise. Sorry I don't have better advice, just wanted to say that it's an idea whose time certainly has come.

Flux Capacitor is Back to the Future right? Don't feel old lol then I'll feel old. I'm only in my 20s (numerically speaking that is...)

I watched the Back to the Future movies with my son when he was younger.
(And the Pink Panther Movies as well as several other classics)

I saw MJ Fox on Jimmy Fallon a few days ago (with his wife)
He’s declined quite a bit since I last saw him - his right arm was really shaking.

Yes it’s Parkinsons Disease he has.

Not sure I want to watch him poke fun at it.

I think it’s still too upsetting for me - the trauma I experienced when I was going to the Neurologist to have ALS, MS, and Parkinson’s ruled out.
I sat in the waiting room praying that if I was disgnosed with one - please let it be MS. I thought at the time it might be the least horrible one of the three.

PTSD anyone?