@brittafr, There is a TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis that sounds a lot like what you are going through - What happens when you have a disease doctors can’t diagnose: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

There is also another discussion where you can meet other members with similar symptoms that might be helpful.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

I would not give up trying to get an appointment at Mayo Clinic. I'm wondering if the following discussion with members who have also had problems getting an appointment might be helpful - Referral to Mayo declined for Autoimmune or Unknown Condition: https://connect.mayoclinic.org/discussion/referral-to-mayo-declined/

Did you try to make the appointment yourself or ask your doctor for a referral?

@brittafr welcome to Connect. I can imagine how disappointing it must be to be denied an appointment, especially when you had hopes to finally find answers to the unknown. I am wondering if you have looked into the Mayo Clinic Care Network? https://www.mayoclinic.org/about-mayo-clinic/care-network

"The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. Carefully vetted and selected for their commitment to high-quality patient experience, care network members share Mayo Clinic's goal of providing patients the care they need, close to home, at no additional cost to the patient."

In case other attempts at an appointment at Mayo Clinic are not successful right now, here's a list of Network members and facilities for you to consider: https://www.mayoclinic.org/about-mayo-clinic/care-network/members

Is there a location close to you on this list?

@brittafr You might want to consider the possibility of Lyme disease. Seek a doctor in the ILADs group because they are the specialists in Lyme and related infections. The Western Blot blood test for Lyme is not very accurate. The more accurate tests are from the Igenex lab. You may be able to find a Lyme literate doctor by contacting them or on the ILADS website.

Here is a lot of Lyme information.

Here are some links that describe the challenges with testing for Lyme disease which isn't just one specific organism causing an infection, but many. The accuracy of a blood test is also affected by how long it has been since exposure to infection, and if the body has mounted an immune response against it, and how that would change over time. The Igenex test covers more bands in comparison which you can read about from the link below. For some of the co-infections that accompany the Lyme bacteria, there are no diagnostic tests and the doctor evaluates the patient physically in addition to testing they do. They might test to see how many specific white blood cells are responding to an infection because Lyme can destroy the white cells that are trying to protect the body by fighting it, and the test would show a reduction in the white cells.

https://igenex.com/ Lyme destroys white blood cells that are your immune system.

@brittafr. Good afternoon. You sound a lot like me. Before I was diagnosed, the only thing anyone could find was vomiting and dehydration. I couldn’t walk well or even think. Finally, they paid attention when I ended up, almost non- responsive, in the ER. An MRI showed many lesions on my brain causing all my problems.
I know you’ve seen naturopaths and GPs, but I urge you to go to a major medical center or a university medical center. I am now being treated by a neurologist-immunologist. It’s a painfully slow process, but you need to start getting well. Becky

@brittafr I saw an amazing show last night by Jennifer Brea on PBS “Independent Lens.” It was a show she recorded herself about her experience . She was finally diagnosed with chronic fatigue syndrome. I think she found a neurologist-immunologist. I don’t have CFS, just another difficult to figure-out autoimmune disease.
Have you been to a large medical center or a university hospital? Really good rheumatologist’s also can help with autoimmune diseases. I really wish you luck. Getting a diagnosis can be a difficult journey (I was tired of being told ‘it’s all in your head’).
Have you found any help recently?

Hi, I can relate to your fatigue. After I got mononucleosis at 17, my body kind of shut down. I have many problems stemming from this infectious disease. It has reactivated several times, known as the Epstein barr virus. Do you have trouble sleeping? I don't know if these would fit you but Narcolepsy, REM or sleep disorder. Maybe look at Endocrinology with Adrenal Gland issues, they can make you tired. Test tsh, hormones and auto nuclear antibodies. Just a few things I can think of. I try to eat a lot of protein, and eat smaller things throughout the day to help keep me awake. I also drink Carnation instant breakfast with milk, or milk substitute. Also had to learn to be a spoonie, and divide what energy I have each day.