Post-Treatment Lyme Disease Syndrome/Chronic Lyme

Posted by rsperling @rsperling, Jun 29 10:18am

I was diagnosed with Lyme disease last June. I had fourteen days of doxycycline (my doctors refused to give me any more) and then two months of fatigue and brain fog. I came out if it finally, and had about month where I was doing pretty well. Then I overexerted myself (I was an avid hiker before this) and it's been a roller coaster of changing symptoms ever since.

I was doing fairly well in the last month or so. Spending a long time on my feet still set off muscle pain, and I would still get tired easily (so still not back to hiking) but I had more energy. I don't know what I did about a week and a half ago (the only thing I did that I don't usually do was take a long, hot bath) but I've been fatigued and experiencing really bad muscle pain ever since.

My question is: what has been helpful to those of you who've been through this? I'm currently seeing an acupuncturist (this actually provides some temporary belief), and taking bupropion for brain fog, gabapentin (switching to pregabalin shortly), the maximum amount of ibuprofen per day (with omeprazole), and a few different supplements that I can't remember off the top of my head.

I'm losing my mind here. I was tested for autoimmune diseases and inflammation, and those tests came back negative. I'm still testing positive for Lyme, but my antibodies are about half what they were last year. I was tested for co-infections and those came back negative. First my doctors told me that this would pass within a year. Now they just sort of shrug and say "wish we could help."

Has *anything* been helpful to you?

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tricia7 | @tricia7 | Jun 30 6:41am

Lyme disease is often deeply misunderstood. I contracted it in June 2020 and never fully recovered; the experience was life-changing. Although I received three weeks of Doxycycline initially, I suspect that untreated co-infections contributed to my long-term symptoms. I later tested positive for EBV, CMV, and HPV, lost 50 pounds, and have since been diagnosed with Stage 4 Osteoporosis, Insomnia, Fibromyalgia, and Chronic Fatigue. It was incredibly difficult to be told by my primary care physician at the time that my symptoms were psychological.

Six months ago, I started a program called RESTORE 180, which was developed by Dr. Rawls, an MD who also had Lyme disease. Having tried many different supplements, I’ve found that this program really helps. I have more energy now and my sleep has improved.

I suggest checking this program out, as they offer a great deal of support. I wish you the very best.

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