My Lyme Journey

I am currently being treated for chronic Lyme Disease. Most likely I've had it for over 20 years. I was an archaeologist and spent time in the field among these bad boys from 1988 to 2001. There were many times where I found ticks embedded on me many days after returning from the field. 

In the summer of 1995, a week after I'd returned from the field, I found a tick deeply embedded in one of my toes. I didn't think much of it. Back then we didn't really hear about Lyme and I was living in Florida, not a place it was even discussed. I removed the tick and flushed it and didn't give it another thought. But that summer, I developed a number of "conditions" that I now believe to have been the first expressions of Lyme. I developed a chronic, system yeast infection that multiple rounds of antibiotics and treatments could not fix. I developed my first auto-immune disease, Raynaud's Disease, which was extreme, even living in Florida! I had continual flu like symptoms and terrible muscle pain. I was only 25 and did not have health insurance but I was a graduate student. I used the campus health care and antibiotics were their only answer, in addition to, "You need to see a psychologist." I did do the later because I had also developed a debilitating anxiety disorder.

I was also living with a terribly abusive boyfriend who himself had a drug and alcohol problem. There is a lot of research showing links between traumatic events and the weakening of the immune system, allowing things like viruses and bacteria to thrive. 

A year later I got out of that situation and moved back home with my wonderful parents. I had put myself on a very strict eating plan, back then called a candida diet. It really did improve my health a great deal. I went on with my life, just feeling like constant pain and headaches, nausea and IBS were just part of my life, just things I had to live with. 

Fast forward to May of 2014. I'd been sick, much sicker than ever before and chronically, for years. I had been on a grain free, soy free, diet for over a year and while that had eased symptoms a bit, I was not finding the dramatic improvements in health that most people, even my parents, had experience. I went back to my doctor and again she didn't have much to suggest. I requested a thyroid panel which she agreed to. We discovered that I was hypothyroid so she reluctantly prescribed medication. But I felt that one month of that medication was not the "silver bullet". After much searching and many other "specialists" endocrinologists, etc. I found my current doctor, a functional medicine doctor. 

She does not take insurance and so it was a source of stress for me but my loving husband was adamant. I'd been sick for so long, missed so many family adventures, given up so much of my life to my illness, that we'd do whatever it took to pay for the health care. 

My new doctor ran a million tests that revealed not only did I have the auto-immune disease Hashimotos Thyroiditis, but I also had dysbiosis of the gut, a mutation of the genes necessary for methylation, very low iron, etc. We began addressing it with a lot of supplements and more dietary changes. It took many months but I finally started to feel better! I dropped 18 pounds and had more energy and less fatigue. Things were going great until late October when the symptoms started to return again. I couldn't figure it out. I hadn't changed anything. In fact I was still eating my super restricted auto-immune diet. As the fall and winter wore on I felt worse and worse. The migraines started again. I average 7 a month and they range from very painful to debilitating. They last on average 18 hours. My body cannot absorb iron. I'm extremely anemic. I have heart palpitations. Severe stiffness in the neck and shoulders. I'm always cold. Nausea is chronic and my gut is a mess. I only have energy enough to walk for exercise. More than that and I get sicker. I have pain that literally travels from joint to joint around my body. I have a high rheumatoid factor without actually having RA. In other words ,my body is full of inflammation. For years I have noticed that I always feel worse in the fall and winter. That's when my symptoms peak.

My doctor ran more tests and said, once we address all the auto-immune stuff, and we have, then we need to look at infectious disease. She said my symptoms are all classic chronic Lyme. So we've started treatment and are awaiting the final test results for all the co-infections that can go along with Lyme. I've learned a LOT about this incredibly hard to kill organism and how advanced it is. I have hope though. It is possible to get better. I'm working on it with many therapies and a great doctor. Meanwhile I have to try to keep being mom, and wife and writer, and designer, etc. because even though there are times when I have to take to my bed for the pain, I have to keep going. 

If you or someone you  know is suffering many seemingly unrelated symptoms and can't get better, I suggest finding a Lyme Literate doctor and seeing if that is your problem. The CDC says there are more cases of Lyme diagnosed in the US every year that all forms of breast cancer, invasive and not. It is in every state, most countries, and there is evidence that Borrelia burgdorferi is showing up in other tick species now, not just the deer tick. Protect yourselves when out hiking and check real well when you come in. As much as 30% of people do not ever get a bull eye rash. I didn't. That is not a diagnostic marker. Many public health departments will test the tick for you to see if it contains Borrelia. It's worth the trip to find out. 

Borrelia burgdorferi

Borrelia burgdorferi

I hope this story can save someone from suffering as I have for over 20 years. I have faith that I will recover. But I'm prepared for it to be a long, bumpy road.