It’s been quite a while since I last posted here. Back before our family moved to the country I began having some strange health problems. Weird things would happen, like my fingers would hurt, the knuckles would swell, and then random episodes of fatigue hit. The day that I couldn’t get off the floor when lying on a beanbag was the day I went to the emergency room.
Living in a very rural area can lead to problems when you’re looking for a family doctor. Qualified physicians can be many miles away. When there is a need for a specialist, you may need to wait for months before you can get in. For example, I am suffering from some sort of autoimmune disorder. We’re not sure exactly what. Everything I have read points to Lupus and Rheumatoid Arthritis. My doctor said the same thing, but then the lab reports came back negative on most points.
Because there are not a lot of places to check for second opinions I checked into a telehealth site. These sites allow people from anywhere in the United States to ask health related questions. The doctors can give advice based on their knowledge and the symptoms of the person asking the question.
It’s really frustrating, because every symptom I am experiencing point to Lupus and RA. Other symptoms have been said to resemble those from polymyalgia rhuematica and polymyotis rheumatica. Then we have symptoms of giant cell arteritis. Talk about a fun mix.
Then when I was cleaning out old boxes I found a photograph taken back in 2002. When I lived in Virginia I had been bitten by a tiny deer tick and developed a ring-like rash. The doctors there told me it couldn’t be Lyme disease, that Lyme was unheard of in that part of Virginia.
However, by checking out different websites, especially those where doctors can give people answers based on the symptoms they are experiencing, I found that Lyme disease can lie dormant for years. Not only that, Lyme can trigger Lupus and other autoimmune disorders!
The trick is finding a doctor who will test for Lyme disease. It can be hard to detect through traditional tests. One doctor with experience in Lyme has spoken out to patients with the same questions as I have and said more physicians need to be aware of the tests used for Lyme. Currently the Western Blot is one of the best tests to detect this disease. The silent killer is a known imitator, much like Lupus. The symptoms experienced by sufferers can range from simple to complex and some are downright mindboggling.
Phantom rashes
Headaches
Hair loss
Insomnia
Heart problems
Hives
Lesions in the mouth
Lesions on other parts o the body
Neurological dysfunction
Loss of sex drive
Unexplained weight gain or loss
Metallic taste in the mouth
Tingling or numbness in various parts of the body, especially the face/mouth
These are only a few of the symptoms caused by Lyme. Many overlap with other diseases. Lupus has many of the same symptoms which can make a doctor scratch their head when tests for that disease come back negative.
Something else I found out by utilizing telehealth sites is that you can be negative in lab tests, yet still have Lupus or RA. It’s been hard to fin a doctor way out here that has heard of that. There’s only one rheumatologist in my area, but he’s overwhelmed with patients. You must have a solid positive batch of lab results to get in to his practice … which I don’t have. Sero-negative is what they call my situation. Some doctors deny that it exists, but thanks to the internet, I know that it IS a real thing and I’m not crazy.
While I adore living here and wouldn’t trade it for anything, not everyone will tell you how hard it can be to get quality medical care. Long gone are the days when the country doctor was your reliable friend. Today it has become all about the money no matter if you are in the city or hanging out here with me and the bears.
