More on Lyme and Psychological Issues

I continue to be faced with people who do not understand Lyme and simply don't care to. If a diagnosis is not given by a "traditional" practitioner then it is completely dismissed and not looked further into.

Recently a friend sent me an interesting interview from TruthOut with Sini Anderson. Anderson was diagnosed with Lyme while filming the documentary The Punk Singer, on artist Kathleen Hanna who also happens to have Lyme. There was a quote by Anderson from the interview that resonated with me,

" ...if you're a woman and you admit anxiety or depression, you just, you know, it's really easy for doctors to just put you off in another category as somebody who could use a little bit of therapy. And you know what? Quite honestly couldn't we all use a little bit of therapy?
But, we're not . . . we have to think about what doctors we're talking to, what symptoms we're presenting to them, because we can't be brushed off into a corner just saying, "Okay, this is somebody who is just sad." It's like, "no, I'm not sad. I'm telling you that I'm having problems with my speech. I'm having a great amount of pain. I can't think clearly anymore," and that "yes, there's depression that comes along with that and there's specific Lyme anxiety, that isn't your run-of-the-mill general anxiety." It's complex."
-Sini Anderson from interview with TruthOut

Anderson is a feminist as well as a director. Although I would not categorize myself as a feminist, her experience of being put off by doctors as someone who just needs therapy is something that I believe may indeed be a more prevalent response to women with Lyme . It is maddening. The interview is really interesting and worth reading. If anything, what Anderson has to say about responses from the "traditional" medical profession is spot on. The controversy on diagnosing Lyme needs to be looked further into, and in the meantime patients need not be written off as having solely a psychological problem.

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!

Lyme Research Alliance 2014 - The Faces of Lyme