After 20+ years of chronic pain and limited abilities, I finally found a doctor specializing in fibromyalgia causes. Also, I found out that I have Lyme disease.
I went to the wrong kinds of specialists for too long
I have been sick and injured for so long, and I have no idea when it started. I did have a crutch at my wedding open house in 1999. I have spent years of my life in bed because moving hurt so much. Being sick and injured has been my everyday life for years. At one point, I went to my doctor, and he diagnosed me with fibromyalgia and said there was no treatment. That was around 2010.
Then, I gradually got sicker and more injured. Not treating anything didn’t solve the problem. Go figure. I learned to make the rounds of the specialists in my insurance network. I learned to try to compartmentalize and limit my complaints to one thing on each visit, because that’s how doctors bill insurance companies. I learned to rely on myself because no doctor actually cared as much about my health as I did.
I spent a year on disability. Then, the insurance company denied my long-term insurance claim. Rather than drag our family finances through the mud, I picked myself up and figured out how to be able to work again. But still, I got sicker and had more pain. In 2020 and 2021, I went to new specialists for stomach problems.
One doctor told me he thought he knew what was wrong with me, but then the tests proved I didn’t have that illness. I went to an appointment hoping to get a treatment plan, only to have him say he couldn’t be my doctor any more because didn’t have the condition he treats. It was so disheartening, because I still didn’t know why I was sick, and to have hope for getting better – and then to have that hope taken away – was rough.
How I found the right specialist
I decided I needed to see a fibromyalgia specialist, so I searched on Google and Google maps to find a doctor in my area. These fibromyalgia doctors do not take insurance, due to something broken in American health care. The lack of insurance coverage made this a very last resort for me. But by then, I was desperate and willing to pay anything. I was offered the option of seeing a nurse practitioner or a doctor, and I chose the doctor, because I know my issues are so complicated! I had to pay $550 to secure the appointment.
Evaluating the doctor
It is not any doctor’s job to heal me. It took me a long time to realize that. It is my job to heal myself, with doctors in a supporting role. This is my life, and no doctor will care about it as much as I do. Doctors usually spend 15 minutes a month with me, and I have to live with my condition all the time, so I have to be dedicated to doing the work. I planned to have the first appointment be about me evaluating the doctor as much as the doctor getting to know me.
When my appointment finally arrived, I was pleasantly surprised. This doctor was the first ever to accommodate my sitting disability. I explained that I do better when I can lean on a table, and he made sure I could do that, including moving rooms. We went over my medical history, which took a while. Then he explained that problems like mine are typically caused by 3 main things: environmental factors (like black mold), sickness within the body (virus, parasite, bacteria, fungus, etc.), or radio frequency issues (cell phones, wireless, etc.). Now, I wouldn’t buy into the third thing, at least for me, so we focused on the first two.
I found it refreshing when the doctor said he would work for me and not my insurance company. No scheduling appointments to fit into insurance codes. But that’s neither here nor there.
The Lab Tests
He ordered a lot of tests, most of which could be done at a lab where I could use my insurance card. Two of the tests needed to be done outside the lab: a Lyme test I completed at home and mailed in, and a food sensitivity test that needed to be done in the office and mailed in. I went to the lab and they drew over 40 vials of blood.
Meanwhile, I was to start some supplements and protein powders. I continued to have severe stomach pain, and I later found I had sensitivity to peas and one of the powders contained pea protein, so I discontinued that powder.
The Diagnosis: Lyme Disease
My next appointment was about 2 months after the first, and he recommended I bring my husband in, so I did. The doctor spent two hours with us! He asked my for my functional level and it was a 2 (out of 10). We started by going over all of the test results and why each mattered and how the abnormal results fit together.
I had Lyme disease, babesia, and Epstein Barr virus (mono). No idea when I was actually infected. I had a few food sensitivities, issues with my thyroid and other hormones, and a genetic issue called MTHFR that prevents my body from absorbing certain vitamins. Everything was very concrete, with evidence, and he described how each impacted my health. It was all very informative.
It was a game changer to learn that at least a good portion of my problems come from infections, rather than just me being “weak.” I actually have something to fight against, rather than just having it “all in my head” or a condition I can only learn to live with.
The Lyme Disease Treatment Plan
Then, we discussed treatment options, and I really appreciated how we made those decisions together. What might work for a healthy person wouldn’t work for me at that point. For example, I couldn’t make a lot of foods from scratch because I was mostly bedridden. And I needed to not become much less functional than I was then, so I could keep working.
So we worked out a plan: I would take some supplements for the genetic issue, and some hormones for the hormone issues. For the Lyme, I would do antibiotics for a month and then switch to disulfiram.
About Disulfiram for Lyme
Disulfiram is a newer Lyme treatment. Stanford did a study several years ago, where they tested all known drugs on the market to see what might affect Lyme disease. Disulfiram has been around for years as a medication to give alcoholics when they left rehab, because it would make them sick when they drank alcohol. Now, I don’t drink alcohol, so I thought it would be no big deal… however, I have had to change my diet significantly because I can’t take the medication and eat anything fermented, including vinegar or even ripe fruits. There is a supplement I can take if I end up ingesting something I shouldn’t, however.
Treating Lyme Disease
Lyme disease doesn’t get “cured;” it goes into remission. I chose the disulfiram because it is most likely to put me into deep remission. I will go into the medication (and adjustments I have made) in more detail in another post. For now, I will just say that I am grateful to have found a doctor who could diagnose me.
I want to take a minute to warn people not to try to treat Lyme on their own, without support from a doctor. It is a tricky, tricky illness. Although it is very important to educate yourself about it as a patient, it is also important to get the perspective of and help from a medical doctor – especially one experienced with Lyme.
Next Steps in Lyme Disease
The ball is still in my court, so to speak, because actually getting better is up to me. But I am determined to put in the learning and effort required to get me better, so I can have a better quality of life in the future. My guess is it will take a good two years (maybe 3) of work to achieve the level of healing I want.
I will keep you posted!