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Cozi2005

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Review for Michigan Lyme Disease Association, Chesterfield, MI, USA

Rating: 5 stars  

I have been sick for most of my life with both neurological and auto-immune illnesses. From childhood, I have asked doctor after doctor to figure out why I keep getting sick, because in my heart, I knew there had to be a catalyst to explain all of the illness and pain. I have had unexplained rashes, lung failures, my reproductive system has been removed due to Stage 4 endometriosis, my thyroid declared "dead", and then I almost lost my left leg - all before age 30! I am in pain 24 hours a day due a neurological condition called Reflex Sympathetic Dystrophy and I also have been diagnosed with Fibromyalgia. In 2016, I had to file disability retirement from my 15 year career with the government because my neurological disease had progressed to the point where it damaged the way it produces vision - sad reality of it being from the brain and not the eyes. I have blurry and double vision often which prevents me from driving and gives me vertigo and makes it unsafe for me and others.

In 2007, I had done some experimental treatments for my RSD at a hyperbaric oxygen clinic in Rockford, IL. I had 18 treatments in 10 days. Prior to the treatments, I was using a cane and a walker every day to get around because the RSD in my left foot/calf made mobility impossible to walk without assistance. During my 5th or 6th time in the chamber, the doctor monitoring me said to my mom he strongly believed I had Lyme disease. He said he had been around Lyme patients enough and had seen them come to the chambers for treatment and my body was reacting in the way he would have expected. I got relief for the RSD, but I ended up sick from the treatments for a few weeks after and suspect it may have been a herx. My mom and I saw an infectious disease specialist as soon as I returned home and she told us how expensive the testing and treatment would be and my insurance would not cover it, therefore, I did not pursue it at that time.

Fast forward to 2016 after I filed for disability... my mom said at this point, we had nothing to lose. She was worried I was going to die and I have a husband and son to consider. We found a homeopath who diagnosed me right away with the Lyme and started treatments. Unfortunately, they made me so sick, even at the lowest dose, I could not handle it. I was frustrated and lost.

We waited another year almost to try again, and by this point, I had learned about Lyme Literate Medical Doctors. In Michigan, I had found three. I made an appointment with one of them and my mom and I went and saw him for testing. I was shocked when he said he did not believe I had Lyme disease - he thought I actually had TB from the germ I tested positive from when I was in college in 1998. We got the results two months later, however, it is definitely Lyme disease and there is no TB to be found. We tried oral antibiotics at first with no changes and then we did daily IVs.

Between the treatment plans, my mom died very suddenly and it's been heartbreaking. She was my advocate, my rock, and my very best friend. I've struggled without her.

This is where Linda Lobes has stepped in from the Michigan Lyme Disease Association. Linda is the president of the association and has been for a long time. Her knowledge of Lyme disease is important, but it's also her knowledge of the healthcare personnel in our area that is so helpful to all of us. If you want to go to someone who is more natural - she knows who may be a better fit for you. If you need someone who may give you that kick in the pants you need - she knows that doctor as well. Linda is compassionate and passionate all in one. More than that, for me especially, she can truly empathize with what I am going through. When I needed to make a change with doctors, I was so lost because I didn't have my mom to help me through the process, and frankly, I was just so sick... Linda didn't just pull out a name for me. She made a call! She called the new doctor's office to make sure they were accepting new patients and then called me to be sure I was okay.

When you have a chronic illness you often feel as if you are on an island even if you are in a room among 1,000 people. It's such an isolating feeling. For many of us, we are in pain, sleep-deprived, and weak. Having an organization like MLDA and then having Linda as president - it just makes life a so much easier.

Role:  General Member of the Public