I have a 17 year old granddaughter in TN who was diagnosed with Lyme disease a couple of years ago. She actually suffered from it for at least 4 or 5 years, but it took that long to get a diagnosis.
Although her mother and I both suspected she had Lyme disease, we could not get a doctor to even test for it. They kept saying. We don't have Lyme disease in TN... Well they do, one of my best friends who lives in Nashville has it and it took 20 years for her to get a diagnosis.
The reasons that the medical community have "black listed" Lyme, I believe are purely political and self serving. The standard antibiotic therapy for Lyme is a course of treatment with antibiotics that far exceeds the standard of care for antibiotic treatment. But because these little bugs ( and there are more than one bacteria that are now living inside a Lyme disease patient) hide inside your organs it takes a longer treatment with pharmaceuticals to kill them, and then it is never certain that you killed all of them.
This summer my sweet Madison had her wisdom teeth extracted. This happened in June and now in August she has not fully recovered. She has nerve damage on one side of her face and jaw. And she still suffers extreme pain with that. Whether Lyme had anything to do with this we will never know, but there are reports online of other Lyme sufferers having issues with dental problems.
Then, just this last week. She started having chest pains, and shortness of breath. This is a 17 year old athlete, mind you. Trips to several doctors did not come up with a diagnosis. I began to suspect endocarditis. A rare but dangerous infection in the lining of the heart. When the symptoms got worse and little satisfaction this far from her medical providers, my daughter took her to UT medical center on Tuesday evening. They waited 6 hours in the waiting room, before they were seen. Tests were run to check her heart and all was normal. But nothing to confirm or rule out endocarditis had been done. Finally after the change of shift the daytime ER doctor spent more time looking into her situation and did order the cultures for endo. WE are still awaiting the results on those.
Then yesterday I think my daughter hit on the likely problem. It is a condition I had never heard of , but if you are familiar with Lyme disease, then you may have. It is called Herxheimer reaction. And it causes many of the symptoms Madison was experiencing, which also are common to endocarditis BTW. It is caused by toxins released into the body by the dead bacteria. The good thing of course is that her treatment is doing what it should, killing Lyme bacteria, but the reaction is debilitating and may linger for weeks. But relief knowing there is an answer to her symptoms is immense. Of course we are still waiting for the culture results, but I am expecting them to be negative now.
I believe we need a full scale education campaign about Lyme disease, how it is contracted, what kind of treatment is required, and most of all pressure for more funding for research, as well as pressure on Insurance companies to cover treatment for Lyme. Currently most health insurers do not cover Lyme treatment. A patient with Lyme could easily bankrupt themselves with medical care even if they have insurance. MY granddaughter's medical record rivals the NYC phone book, and she is 17 years old. Not to mention the move by the Republicans to remove the pre existing condition part of the ACA will put her into a state of never being able to have health insurance.
Finally this IMHO only proves the point that Universal Health Care is the only way to go. Allowing private for profit companies to control my medical treatment is not acceptable.
That is my rant for today. It has been a very stressful week worrying about Madison and her condition. She has lost most of her summer now due to health issues related to Lyme. She will start her senior year in high school in a few weeks. And she hopes to go on to college with a scholarship for volleyball.
Just an extra note. Madi had recently started a new medicine for her Lyme and shortly after beginning it she developed all of these symptoms. Not a coincidence, she had been fine playing volleyball without any issues just the week before...
