LYME DISEASE DISCUSSION COMMENTS & INSIGHTS

Dr. Cameron encourages insightful discussions around Lyme and other tick-borne diseases. He moderates these comments. Your comments could be selected to help others deal with struggles and find hope.

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  • Your Insights And Comments

Your Insights And Comments

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Becka M Cross
Becka M Cross
3 months ago

I found this site today, & just place an order for one of the books. I am struggling to get a diagnosis for Lyme. I never found a tick, but while living in upstate South Carolina, I discovered a rash on the back of my right thigh after being in an area that had some high weed growth. At the time, I didn’t think much of it, & since it was around 1987, had not heard of Lyme disease. Around 2015, I began feeling like I was falling apart. I remembered that rash, & had been doing my own research online. (I have been an LPN since 1993, & began to suspect Lyme after reading about it.) Approximately 2016, I mentioned this to my MD, who refused to draw labs because “it was so long ago, & the labs are very expensive.” I then saw another MD who was highly recommended to me. She tested me for several things, but ordered ELISA & the Western Blot. When I returned to her office to get the results, she told me that I did have Lyme, & had also had Epstein-Barr virus. She wrote a script for Doxycicline 100 mg, 1 daily for 1 month. It made no difference in any of my symptoms. I wanted a copy of my chart, which this office refused to give me. A few years ago, I tried again with another practitioner. She could not find any evidence in my chart of Lyme. The office of the MD who had drawn the labs told me that “your new practitioner can look at the labs, & make that diagnosis.” Well, with nothing documented in my chart, she couldn’t do that, even if it were standard medical procedure. My current practitioner ordered the IgG/IgM panel, of which all was negative. Now, I am aware that you can have Lyme, but receive a FALSE negative. I had asked for a referral to an infectious disease doctor, & my chart was sent to a gentleman in Indianapolis. However, as is not surprising, his response was that I would not be seen at this time because of not having a diagnosis. I feel like 4 health care practitioners have decided to ignore me.

Dr. Daniel Cameron
Admin
3 months ago
Reply to  Becka M Cross

All the best with the book. It can be difficult to navigate care with for someone with Lyme disease. The tests are not as reliable as I would like. Some doctors are reluctant to diagnose or treat Lyme disease with a positive test. Finally the NIH trials cited to dismiss retreatment enrolled patients ill for 4.7 to 9 years.