Lyme Disease Patients: The modern Lepper?

In the interest of getting all my most significant reflections on my experience with Lyme Disease in one place, I am reposting this entry, originally written in June of 2013.

I ask this because of how medical professionals seemingly want no part of treating those who have been infected with Lyme Disease.

I went to my doctor on Wednesday, who diagnosed me with Lyme in April, with news that the current treatment hasn’t brought about the improvement in my symptoms that she thought it would. I was taking 3 antibiotics, along with several supplements and vitamins. When she learned that my fatigue and pains had not improved, she was a bit perplexed as to how to continue.

We spoke of two things: penicillin injections every 2.5 days and IV antibiotics. Dr. C said two things. One, that insurance will not cover IV antibiotics for Lyme, and two, if she were to prescribe such a thing it would send up a “big red flag” and risk her being reviewed by the medical board and could lose her license.

Treatment for Lyme is controversial. The deciding body of doctors that have put forth the protocol for patient treatment are allegedly on the payroll of the insurance company. Or so I’m learning from various sources on the subject.

So, we decided that injections would be our next step, along with more blood tests to see if there was additional tick-borne infections that may be complicating my recovery. She hesitated, because I would need the injections every 2.5 days, and since her office is more than an hour from where I live, it was impractical for her to give them to me herself. She asked if I knew a medical professional in my community that would be willing to help deliver the injections, or at least demonstrate to my husband how to do so. I assured her that I did know people, and that if I were a bit more flexible, I could probably give it to myself, since I have the training to deliver such an injection. Sadly, since I’ve been suffering, my flexibility has declined, and I am unable to give myself a shot in my upper glute.

She gave me the script, and after visiting 4 pharmacies, I finally found one that would be able to fill the script for me. I also made a phone call to a few friends in the medical profession that I thought would be willing to help. And when I got my first taker, I was very happy. But hours later, I got a second phone call, in which both she and her husband (a nurse and a P.A., respectively) backed out.

She tried to explain herself, albeit nervously, saying at first that the prescribing should have educated my husband on how to deliver the injection. I let her talk a bit, and in the process discovered what I believe to be the real reason: neither she nor her husband has treated Lyme patients with antibiotic injections, and is not comfortable doing so.

At that point I knew I was on my own. So, I began reviewing how to give a proper IM injection in the upper glute, and even found a youtube video that was helpful to my husband. Luckily, he’s comfortable around most medical procedures, and having grown up on a farm where basic vet care was done by the family, was at ease delivering injections.

And tonight, I got my first injection, and will continue to get them for the next month. And I daresay he did a fine job.

It saddens me how most Lyme patients are left to fend for themselves, both by the medical community and insurance agencies. If you are curious about Lyme disease and why its diagnosis and treatment is so controversial, there is an excellent documentary on it available for free on hulu.com called “Under Our Skin.”

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