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jen12 (@jen12)

Desperately Trying to Get Diagnosed

Autoimmune Diseases | Last Active: Feb 13 9:00pm | Replies (94)

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Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.

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Replies to "Hi, I have been off the network for about a month. Got a new computer and..."

Hey there, thanks so much for the encouraging message 🙂 I honestly didn't expect any response at all to my initial reply, I just googled "Rejected by Mayo" and this popped up so I used to to vent. I'm really happy to hear you are doing better 🙂 So the Cleveland Clinic has accepted me for an appointment and it looks like I'll be going to Ohio soon, hopefully they'll be able to tell me something the 25+ other doctors I've seen (including Mayo Jacksonville) have not!

Also interesting about the Lyme.. I grew up in a house deep in the woods on Long Island, pretty much ground zero for lyme, several of my family members have had it. I was tested for it a couple times and it's always negative although I know those tests aren't 100%. Also my symptoms started about a year after I moved out of that house and while I was living in Europe. So I don't know. Hopefully will get some answers soon! again thanks!

Boy, I’ll bet you were tired after those 3 trips @sundance ! And you did all the driving?? You mentioned that you went thru every department in the hospital and came up with a plan. Do you mind sharing your plan? It might help others. Thanks

Go to Amazon Prime Video or underourskin.com and watch the movie: Under Our Skin –