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Visited Mayo and gained no traction
As previously posted, I have gotten pushed back from Mayo on a technicality that they don’t treat EBV not taking into account that the only reason I have EBV is because something in my body is running wild.
After waking up to bloodshot eyes and extreme tinnitus again, I decided to try getting in through the ER in hopes they would actually try and find the root of my issues.
Issues verbally discussed with the doctor are tinnitus 24-7 for over a year, headaches, eye aches, confusion, memory loss, brain fog, extreme fatigue, burning at the back of my cranium and more.
Mayos solution? Blood and urine analysis just to tell me I have high blood pressure and am over producing red blood cells. If you need further help, we suggest you get a referral from your GP. Have a good day.
My GP is going to refer me to an infectious disease specialist in which again, I’ll be denied (unless I pay cash) and Mayo will once again deny me because of my EBV levels (which are 481, almost 454 higher than normal).
So I’m essentially right back to square one again. Issues are getting worse and nobody in the health care world really has an interest in helping.
Further proof that our healthcare system is broken.
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Ther is an illness where ur body stores too much iron. I can’t think of the name of it. Please Google. It can affect your organs.
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1 ReactionI have scleroderma and some of the ways that I do research when looking into a rare illness are:
Go to Pub Med in the National Library of Medicine. https://pubmed.ncbi.nlm.nih.gov
I would search for EBV and look at the titles of the articles and research. If you see one that connects with you I would look at the authors and what medical centers they are from. From there you can go to the medical centers websites and see if they have rheumatology or infectious disease departments or whatever speciality and who their providers are.
Another way to search is to go to the NIH website. https://www.nih.gov/
You can search for EBV there and see if there are any clinical trials and what institutions are doing the trials.
You can also go to US NEWS and WORLD REPORTS and check their annual list of best medical centers and hospitals and then narrow your search to a specialty.
In years past if someone was sick and couldn't get the care they needed in their home community, providers would suggest to their patients to go to the ED at Mayo Clinic. That won't help you much if it is a chronic illness. They see Trauma patients and acute illnesses. They might do a few labs and tell you to go see your home provider.
I will give you myself for an example. I was progressively having pain in my hands over several months and working with my PCP. One day at work I found my hands weren't working right and I couldn't walk without holding the wall. The doctor who saw me in the ED said he was concerned that it might be MS and I should go to my PCP and have an MRI done. They did a few labs and an ECG and sent me to my PCP. No MRI for me in the ED. I wasn't considered Acute or Trauma.
It is also important to know that if you do get into a specialty area, Mayo is CONSULTATIVE. They will evaluate you and give you their best recommendation to take back to your home provider. Most specialties do not provide ongoing care. Unless you are here for surgery or cancer treatment or a transplant, I wouldn't count on being followed by a provider at Mayo.
And getting through the triage to get an appointment can be tricky. If the provider reviewing your records believes that you can receive the same level of care or have received the same level of care and Mayo has nothing further to offer they may decline you an appointment. Socialized medicine.
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1 ReactionIt's hemochromatosis.need a genetic test to prove.
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