So, What's the Diagnosis?

For people with Lyme multiple diagnosis is the norm. Lyme is extremely hard to diagnosis and "Chronic Lyme" is still rarely recognized as an actual disease amongst many people in the medical profession. A lot of this has to do with testing that is less than perfect, and testing from labs that are not validated by Center for Disease Control (CDC).

"At least seven labs in the U.S. have been denied permission to offer Lyme tests over the past decade in New York, according to state records obtained by the New England Center for Investigative Reporting. The state is the only one that performs a rigorous review of tests to ensure they identify what they claim to before they can be offered there." - Beth Daley and The New England Center for Investigative Reporting (this is a really interesting article, worth reading)

This is not comforting information for those of us diagnosed with "Chronic Lyme", especially if we have used a lab that is not "approved." I hesitate to share my personal tests results because of the response I have received in the past from both the medical and non-medical community. The response has been mixed, and thus very difficult to deal with. However, with the hope that sharing my experience will help others,  I am going to give you an overview.

When I first got sick I had a tick bite (I have had tons through the years in addition to this one). The bite was on my head. I have no idea if I had a bulls-eye-rash and I did not save the tick. I began to experience the typical symptoms that are common with Lyme, but did not make the connection for at least 7 months; neither did the doctors. In fact when I first started wondering if it could be Lyme, I asked several doctors and was told if I didn't have a rash, then no and also, that we did not have Lyme in MO. OK, (unfortunately this was at a very,very reputable hospital) so what did I have?

The first diagnosis was Fibromyalgia and then later Functional Neuro Symptoms. When diagnosed with Functional Neuro Symptoms I was told I needed to see a psychologist and a psychiatrist, that I needed to be on a lot of medicine, and I would have to deal with it the rest of my life. This was not a comforting thing to hear, but neither is a Lyme diagnosis. Truth is, according to the exhaustive list of symptoms for this diagnosis I do have Functional Neuro Symptoms and so does every other Lyme patient. Unfortunately, I have taken and do take the medicines recommended for this diagnosis and have/do see a psychologist and yet still continue to have the same symptoms. Some say I  haven't been medicated correctly, and others say don't get on any more medication. What a quandary I am left in!!!

To digress a bit…when you are sick and trying to find an answer to why you are so sick multiple diagnosis and people's opinions can be very emotionally draining (this does not help symptoms regardless of diagnosis). This is probably one reason people withdraw, get discouraged, get misdiagnosed etc. etc.

So, you are probably wondering what I decided to do. The answer is BOTH. I will continue to be treated for Functional Neuro Symptoms and I suggest that anyone diagnosed with "Chronic Lyme" do the same. Seeing a psychologist can be extremely helpful and necessary. Getting on a neurological medicine such as Gabapentin can help with neuropathy and other neuro symptoms, and antidepressants are an obvious aide when dealing with a debilitating disease. But, I am continuing to try treatments for the Lyme as well based on the recommendation of doctors that are constantly being educated on Lyme.

As far as sharing my personal test results, I will in another post!