Wow! We never expected this blog to reach many people, thinking it would mostly be read by friends and family. Trust me, we don't have THAT many friends. As of the moment I'm writing this post, "Josey Fights Lyme" has been viewed over 8500 times! That's nothing compared to a big-time blog but we are surprised and humbled by the interest. We like to think someone, anyone, has learned somthing so far and maybe another Lyme patient has felt less alone reading about Josey's journey. Thanks.
A lttle term clarification: Lyme-aware vs. Lyme literate
"Lyme aware" refers to anyone who understands that chronic Lyme disease is real, and may be used by a professional who supports Lyme patients - another doctor, a physical therapist, pharmacist, counselor, a naturopath, herbalist, etc., or anyone who is learning about Lyme and what Lyme patients need.
"Lyme literate" refers to someone trained by the International Lyme and Associated Diseases Society. This training includes knowledge of bacterial, parasitic, viral, and other infections, and how they manifest in patients. Also, this knowledge includes how to treat Lyme/MSIDS and inidicates that a pracitioner has attended any further training necessary and specific to their area of expertise.
The doctor visit:
Josey had her phone appointment with her LLMD a couple weeks ago. She continues to improve and tolerate medications more than expected, and we began a new treatment protocol on March 16. This protocol is tough. Mean. She has been so nauseous that all her anti-nausea medications aren't enough to combat it. The good news is that the meds are strong enough to eventually make her sleep. She has had some pretty significant pain, but not to the degree she had before. Pain meds are needed but thanfully they help. The additional psychological symptoms are terrible. Jo has had severe depression and anxiety, invasive thoughts, tactile hallucinations of bugs crawling under her skin. She is also having vision problems, muscle spasms and tremors, and vivid nightmares. We hope these begin to go away soon.
Still, we are thanful for her progress. Last week, we signed her up to start the HiSET, which will allow her to get her GED. Even six months ago this would not have been possible or considered. She has been able to go to her part-time job a few times and has a trip planned for her 18th birthday in July - counting on being healthy enough to go. Thank the Lord for progress, people who support us, and for the ability to provide Josey with excellent treatment.