Coping With Lyme Disease

Many people are diagnosed as having Chronic Fatigue Syndrome (CFS), ALS Parkinson’s, Multiple Sclerosis, Fibromyalgia and more diagnoses when really it is Lyme. Sometimes these ‘misdiagnoses’ aren’t really misdiagnoses because you do have CFS, fibromyalgia, demylenation….when you are infected with Lyme (which usually also includes co-infections. Lyme is very sneaky, so to speak and can evade current testing. The current tests often only include a few species of the Borrelia bacteria (Lyme) when there are many more species that are presently known. This, along with other reasons, can often cause the tests for Lyme to be negative when a patient is positive. Lyme is really a clinical diagnosis.

There are many differences of opinions about how to treat this bacteria and its co-infections (bartonella, erlichiosis, babesia to name a few). Some physicians treat for about 2 months or less. If problems persist after the 2 or so months, then they come up with a different diagnosis. But, some physicians have studied the infections more in depth and have found better results with longer treatment which has been my case.

I went through about 8 years of these diagnoses: CFS, Fibromyalgia, Anxiety Depression ‘there is nothing wrong with you’ and others. I had never heard of Lyme Disease until my family doctor took it upon herself to test for it. The test was positive for me (but for many it is not positive for a while).

The Lyme bacteria and co-infections can be cleared from the body if treated immediately after a tick bite. But, when it takes years to find the culprit to your illness, the bacteria has taken over your body-particularly the Central Nervous System (with me). At this point, there are ‘cysts’ forms of the bacteria hiding waiting for the opportunity to jump back out of hiding and have a party in my brain-again.

I now have spinal cord degeneration, demylenation (nerves-like MS), brain lesions, seizure disorder, neuropathy CFS and fibromyalgia, gluten intolerance, endocrine problems, sleep disturbance, cognitive problems, barely drive…..

But, without a Lyme Literate Medical Doctor (as Lymies call them), I would be so much worse. I thought for a while that I was not going to be able to walk, communicate, basically be ‘out of my mind’. Delayed diagnosis or misdiagnosis can lead to these problems and more.

If you suspect Lyme Disease, please visit a forum of Lyme patients and talk about your symptoms. There is a lot of controversy about how to treat this disease. Ask the patients themselves about their experiences with doctors before you spend all that money running from one doctor to another. Knowledge is power. Learn about Lyme. It is the 1st or 2nd fastest growing infectious disease in the U.S.