In August of 2000, I fell suddenly and severely ill and eventually drove myself (with my 11 y/o son in tow) to the ER. I was sent home, being told I just had a virus and would be better in 7-10 days. The next day, I was worse and noticed a bullseye rash on my lower back. I had a fever of 105.5 and severe vomiting. I went to my GP, who immediately sent me to the ER at his hospital, suspecting meningitis. I had a lumbar puncture done right away, but it was negative for meningitis. I was kept in the hospital for a week while they tested for brain tumors, West Nile, etc. and eventually was diagnosed with encephalitis and Lyme (due to the bullseye rash, but not tested for Lyme that I know of). I was on IV antibiotics, fluids, and painkillers during my stay, and then sent home with a PICC line and a visiting nurse for a month. That was the extent of my treatment. My body has never been the same since.
A year later, I went back to my same doctor to find out why I was still so sick all the time with daily migraines, arthritis, swelling, and a myriad of other symptoms. They tested me for Lyme disease, and I was told the test not only came back negative, but showed that I had never had it! I continued to suffer new and changing symptoms for the next several years, but at some point several years later, they seemed to get a little bit better. Then about five years ago, I got severely sick again. Rashes, fevers, vomiting, pain, low white cell count -- they even thought I had leukemia. I saw countless doctors and specialists, had MRIs, CAT scans, all sorts of tests, saw the oncologist three times before he finally did a bone marrow biopsy...no leukemia.
* * *
For the past five years, Doree endured nearly every test imaginable while receiving no definitive diagnosis. In 2016, during an MRI for yet another test (for MS), a suspicious mass was found and originally thought to be on the brain. Fortunately, it turned out to be outside the skull in the temporal lobe, and she underwent surgery for the removal of the mass, which turned out to be benign. However, this turn of events serendipitously led to a stranger telling her that, due to her medical history, she still had Lyme disease -- that it had never been treated properly, and to find a Lyme Literate Medical Doctor.
Doree then started researching Lyme and chronic Lyme, and sure enough… all the pieces of the puzzle started to come together. She joined Lyme support groups in her state and was directed to a list of Lyme Literate physicians to contact, with one LLMD in particular being highly recommended. However, this physician was located in Indiana and was booked at least a year out. She was told to try back again, though, just in case, in a couple of months. After calling back every month or two over the summer and into the fall to see if any spots had opened up with this physician, and finally somewhat pleading for help on her last phone call (the symptoms had gotten so bad), one Thursday in January 2017, she received the call that there had been a cancellation and if she could be there on Monday morning, she was in with this doctor! It was a miracle! She actually cried with just the thought of finally receiving some help.
The finally, in January of 2017, Doree learned of a highly regarded Lyme disease specialist in Indiana but she was told it could take up to a year to get an appointment. However, miraculously when she called, they “just happened to have a cancellation.”
This five hour road trip from Tennessee to Indiana would not lead to another dead end as Doree relates: "I was on a five year journey of misdiagnoses that ended when I found this specialist." Doree’s physician believes that she may have been suffering from Lyme disease for decades since Lyme disease can be chronic when not treated properly from its inception. A panel of blood work was done and the levels of Lyme were very high, and a few co-infections were found to be present, as well. Finally, someone who not only believed her, but actually gave her a definite diagnosis! It had taken so many years to get to this point; she was overwhelmed with relief and gratitude!
Now with a combination of traditional pharmaceuticals and a holistic approach to the treatment of the disease, Doree is finally seeing some improvement in the quality of her life. It is her desire to remain under her physician’s care in 2018; however, since June, Doree has not longer been able to work full-time due to fatigue and other complications from her disease. (She also was very possibly re-infected over the summer and only more lab tests will determine if more infections are now present.) Yet despite the debilitating nature of Lyme disease, it is not considered a chronic illness, so one is not eligible for disability and the cost of treatment must be borne by the patient. Doree is currently self-employed and her sole source of income is derived from sales generated from her online vintage clothing shop on Etsy. As this is a new business venture, she currently earns barely enough to make ends meet.
To continue as a patient, Doree’s treating physician requires an annual in-person visit (which would entail an overnight trip to Indiana) and two telephone consultations during the remainder of the calendar year. The cost of these visits along with any tests that may be ordered and a year’s supply of pharmaceuticals is approximately $2500.
Please help Doree on her path to healing.
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