Lyme is one of many Autoimmune Diseases that share the same or similar symptoms. It’s one reason doctor’s tend to treat each symptom until they realize it’s one illness and give a referral or you’ve given up on them.
My journey started with pain in the middle of my chest, Costochondritis, my General Practitioner said, it will heal in three months and to come back then. The next appointment I was diagnosed with something to do with my left Clavicle. Time for a second opinion, the new doctor said no it wasn’t my Clavicle and recommended a Neurologist. I walked down the hall and made an appointment the same day. I spent a year with the Neurologist, taking every test she could do, all the test were abnormal but not enough to make a diagnosis. The test result were interesting and surprising, I was having high spike seizure at nigh,t unknown to me. She recommenced I see a Rheumatologist.
The recommendation was a clue to what might be wrong, Rheumatologist treat Autoimmune Disorders. I hit the Internet and started searching by taking the results from each test and adding autoimmune. In less than a minute I had a list of the most common Autoimmune Disorders. I did an uneducated elimination until the list was down to four. I took a stab at Lyme, then started reading everything I could find.
Finding a Lyme doctor was difficult because the Medical Board was still taking medical license’s away from doctor’s who treated Lyme. I found ILADS which is an organization for doctors who believe in Chronic Lyme. The Center for Diseases Control does not believe in Chronic Lyme, saying treatment should not go beyond six weeks. Not much at the CDC has changed today. If you’ve been turned down by your insurance company to cover your treatment, here’s why. Once of the Center for Diseases Control makes a decision on how long treatment takes, insurance companies will only cover what the CDC says is necessary. This also means every government-funded medical doctor or facility will not treat more than the six weeks the CDC dictates.
Getting in contact with a doctor was secretive, first I was asked many questions as to how I found the number and the type of doctor I was looking for. She said ok, someone will call you with the names of two doctor’s.
Picking the doctor close to my house made sense at the time. I was clueless on what to expect. The first appointment we talked about symptoms, I left with many prescriptions and a lab order that called for 25-30 vials of blood. He made the diagnosis but something in my gut said find someone else. It was an easy decision when he told me I had high lead levels and would have to go thru this terrible treatment to purge the lead. Latter that week I looked at the report again, it wasn’t my report, it was another patients. If a doctor’s office can’t keep their paperwork correct, I need to move on.
I made the decision to look across the US this time to find the right doctor. The Lyme doctor I chose was in Washington D.C., he had an excellent record as an Infectious Disease doctor and was involved in discovering AIDS, putting a name to the face of why gay men were dying in large numbers.
At the beginning of treatment I flew to D.C. every month, for a year and a half. Over time the appointments were spaced out, I saw him for three years. I was fighting hard to win over this illness. I kept the Lyme doctor and PA up-to-date on all medicines taking, emphasizing every Psych medicine changes. My Psychiatrist was the only other doctor I was seeing.
His PA called a new prescriptions, I normally will not put a pill in my mouth without going to FDA.gov. I was so sick and didn’t take the time to read more about the medicine. The one she prescribed was in the same category of another drug I take and it made me Psychotic. I walked a circle in our house for almost a week, 24 hours a day, before the reaction went away. I called to tell them they can’t be mixed, the PA says there’s no interaction. I looked on FDA.gov and confirmed the sloppy work, did they even look at my chart? She was responsible for the horrible state I was in. I never went back.
I’m writing more post on Lyme this month.