Transfusing Lyme
Transfusing Lyme was the first painting I did that had to do with my Lyme disease. I was doing the painting as an expressive art exercise to help me deal with my own suffering but during the process of doing this painting I knew that I was supposed to paint the stories of other Lyme sufferers not just myself. So out of this first painting the Lyme Awareness Art Project was born.

L.E.M. 45 Corinth, Vermont

At a time in my life when I was enjoying the rapid growth of my art career, I was becoming increasingly ill. My art work was being represented by about 12 galleries and Don and I were traveling around New England in our RV doing art fairs. I also was taking some workshops on the Expressive arts and Don built me a huge studio where I was planning to facilitate expressive art workshops. My goal was to help others heal using the creative process. I had never been more focused in my life, yet at the same time I knew that something was very wrong with my own health. It all seemed to begin around 2001-2002 when Don and I had just done craft shows both in Connecticut and Cape Cod. When we returned from our shows I found a rash on my stomach and then got sick with what I thought was the flu. Later I got terrible pain in my joints, fatigue, cognitive problems, vision and hearing loss, weight gain and eventually lost my ability to work. Losing my ability to paint was the hardest part of this disease for me.
 
My health has slowly declined over a period of five years to the point that at times it is difficult for me to read, write, walk, stand, or even sleep. I was in a great deal of pain and it took great effort for me to talk when I was fatigued. I would get lost very easily in conversation and was unable to complete a thought. It was often easier for me to type what I want to say than to try and speak it, although at one point even typing became difficult for me. Most days I spent more time sleeping than I was awake and I had grown very weak. I was frequently in the emergency room for breathing difficulty do to restrictive airway disease, uncontrollable diarrhea and once even in ICU with heart problems. My vision continued to decline and I began to suffer from crushing headaches, ear pain and abdominal pain. I was also becoming allergic to everything I come in contact with, including foods and medications. I even landed back in the ER with an allergic reaction to the antibiotics I was on.

All of this could have been prevented with early diagnosis and treatment. I went through years of testing and misdiagnosis before I finally received a correct diagnosis in August 2007. My Lyme test came back 100% positive, with no grey areas yet the first lab that tested me 4 years earlier (a lab notorious for misdiagnosing Lyme) told me the test was negative. After being sick for so long I was embarrassed to tell people how bad things really were, after all, my Doctor was repeatedly telling me that I was not sick.
The more my neurological system was affected and the more my brain was damaged the more I was forced to give up. I started dropping out of some of my galleries and greatly cut down on the work I sent others until at one point I was not able to paint at all. The hope of giving the expressive art workshops I dreamed about was fading. Because we borrowed the money to build the workshop and for my classes we were now forced to put our dream house, that we had totally renovated with our own hands over a period of 7 years, on the market. I was becoming increasingly depressed and confused so I tried reaching out to my friends, but I didn't know what was wrong with me so I was out there flailing around desperately seeking the support that was paramount to my survival at this point. My friends slowly drifted away as they were no better able to understand what was happening to me than I was. At the same time I truly did think I was losing my mind.

In 2007 I went to my Doctor repeatedly and told her that I was ill. At every appointment she told me things like “All middle aged women feel lousy” “You are premenopausal, there is nothing wrong with you” on the visit when I told her that I was going to get a second opinion she said “You need to stop diagnosing yourself with diseases and realize there is nothing wrong with you. All women in their 50's feel lousy!” When I replied that I was not “in my 50's” but was only in my early 40's she said” Well 40 year olds feel even worse than 50 year olds because of the whole premenopausal thing they have going on” I kept telling her about my tick bite, the rash I had and how the symptoms fell into place over the last 5 years and the last thing she said to me that day was “Linda, I can 100% guarantee you that you do not have Lyme disease”.

This was when God sent me my angel. A good friend that was suffering from Lyme gave me the name of a LLMD (Lyme Literate Physician) and he ran a battery of tests showing not only that I had Lyme but that it has actually cause a significant amount of damage in my body. He said there was plenty of concrete evidence in the blood work results for any doctor to have seen that something was very wrong with me. After months of him trying to get my body strong enough to tolerate the strong medications he needed to put me on I am now being treated with the Donta protocol a combination of antibiotics and anti malaria drugs. I believe he saved my life and because he uses long term antibiotics I do fear him having his license to practice medicine suspended or even revoked. If that were to happen my illness would once again progress and I would be back at square one.

My treatment is going very well. I have good days and bad days but never as bad as they were before I started treatment. I have complete faith in my treatment protocol at this point in time and I do believe that I will regain most if not all of my ability function normally. Despite the fact that we are selling our home and studio I still hope to someday facilitate expressive art workshops. Until then I am trying to raise awareness about advanced Lyme disease through the LAAP “Faces of Lyme” paintings.