The Long Road of Lyme

Kira, May 2021

In my last post, though my focus had for a long time been on the heartache of losing Ryder, mentioned health issues. The return of pyoderma gangrenosum, the back pain, etc. Since then, things have escalated and I’ve had skin infections, a vitreous detachment (floaters, blurry vision, some pain) in the right eye, severe and almost continual pain in joints, back, and muscles, horrific fatigue that has me falling asleep while trying to write, weakness that doesn’t allow me to walk farther than the barn and back without pain and exhaustion…. I see my doctor tomorrow and will again, presenting a great deal of evidence, get her to try and consider what I believe is going on.

In October, I had lyme disease. I briefly mentioned the night, in another post, where a rat climbed into my bed and I made a trip to the ER the following morning. Before the bite, I’d been suffering fever and flu-like symptoms and a lot of bone and joint pain. I’d actually gone for a COVID test (which was negative). The day after the test I discovered a bullseye rash on my side, in a spot where it had been hidden until it spread large enough to appear in the mirror. The ER doctor said I had lyme, put me on 21 days of doxycycline (which is also the standard treatment for rat bite), and sent out a test.

It was negative. That fact, and the doxy, is why my doctor is reluctant to consider Post Treatment Lyme Disease Syndrome.

In the last month or so, as my pain and problems have grown, I’ve been doing a great deal of research. I’ve discovered that the standard lyme disease test, the ELISA test, gives a false negative about half the time. A two-tier test is used for lyme disease. The tests do not look for the actual bacteria (Borrelia burgdorferi), but for the antibodies that the victim’s system creates in response to the organism. The ELISA test, which just looks to see if there are antibodies present, is done first. If it is positive, a sample is sent for a Western Blot test, which is more thorough, though even that test is known to produce false negatives. This means that a large number of people are deemed to be clear of lyme, when in fact they are infected. In my case, the Western Blot was never done (even though the lab report recommended that I be tested again in 2 weeks due to my symptoms). In other words, someone dropped the ball.

All of the things I listed above are known to be symptoms of chronic lyme disease, or post-treatment lyme. The CDC indicates that up to 20% of people who are treated for lyme disease when symptomatic remain ill. Another study done more recently than the ones used by the CDC indicated that if the person has the rash, the treatment failure is more like 36% (Aucott 2013).

I have a ream of research, all saved in Evernote, which I plan to bring with me tomorrow. I know that the doctor will want to focus on the fact that my osteoporosis has gotten much worse (according to my recent bone density scan), but I will do my best to respectfully steer the discussion toward the whole person who is suffering.

I don’t know what to do if I have chronic lyme, as recent studies have shown that long-term antibiotic treatment is not that effective. The farrier who cares for my horses said that a natural regimen of herbs and lifestyle changes helped him, but I don’t have information on the details. He did mention that Cat’s Claw helped a lot with his pain. He suffered with chronic lyme for many years but says he hasn’t had a flare in a long time. I will keep his experience as my vision.

I do have a new little helper, though. In my last post I mentioned my hope that my past Salukis would send me a dog small enough for me to safely handle, an Italian Greyhound, when I was ready for another dog. That post was written right after the death of my darling Ryder. As it turned out, a friend not far from here who breeds “IGs” had a four year old girl whom she believed would be happier as an only dog. Kira is, it turns out, a sweet and silly girl who seems to love living in our home. She moved in with us in April, and we all adore her. She is not a Saluki, which is taking some getting used to, but she has been a true comfort for me in these last few months.

If you wish to know more about lyme disease, click the links in the article above, or visit the following websites.

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