Lyme Disease: Stories From the Front Lines of An Epidemic –Debbie F

In her own words. (With permission.)

*****

Debbie F.

LD’s slow but steady ride in my body

I was just diagnosed with Lyme Disease after 30 years of symptoms. When I was in 10th grade, just 15 years old, I noticed a round rash on my right arm. I went to the doctor and was told it was ringworm. This was in the early 1980’s in Miami Florida. At the time I was living in Miami with my mother but spent the summers in Maryland with my father. The rash group bigger and none of the anti fungals seem to work. Shortly thereafter I developed eczema on my hands and my allergies seem to worsen. Shortly after the initial rash disappeared my left knee became inflamed. I then went to a doctor who drained it several times and then decided I needed laproscopic surgery to see if there was a hidden tear. The doctor came out and said that there was nothing wrong in my knee but that it looked very angry and he cleaned out the joint.  My allergies continued to worsen and I reacted significantly to any bugs bite I received. I seemed to get rashes and hives for no apparent reason all the time. When I went to the Bahamas with my family I was covered head to toe with hundreds of mosquito bites when the rest of my family had a few.  In college, I developed IBS symptoms and chronic strep throat. My same knee blew up again in my junior year of college, and again I had to get knee surgery. When the doctor came out looking confused, he explained  had  thought he would find a tear in the meniscus. Another strange episode, my senior year of college, when I went to Mexico and noticed 3 thick red lines on my forearm. They resembled stretch marks and lasted for months. I also developed a weird rash the following summer that looked like measles.  This time, i was so dizzy I couldn’t stand up for 3 days. I was used to weird reactions but when my right elbow swelled up, I was bummed. Not long after my other knee also swelled. I was now 23 and told I had RA. Cortisone injections were to be my new past time and I was put on one arthritic drug after another. Plaquenil seemed but  to work for a while but  like every other medicine I would have multiple flare ups. I noticed that my joints with flare up when my allergies would get really bad especially in Spring  and Fall. When i mentioned this to the Rheumatologist, he said there was no connection. This continued for many years, and many meds were tried, I now grew frustrated and depressed . I had TMJ and planter fasciitis along with chronic inflammation in one or more joint. . I even went to the Cleveland Clinic and Hopkins.  As I talked to specialist after specialist, I was being diagnosed with everything from rheumatoid arthritis to joint hypermobility syndrome to fibro to disc disease.  Lyme was tested and it was negative according to their results. I never questioned them because I assumed the tests were reliable. I was on all the different arthritic medicines including  Plaquanil  Sulfasalazine, Minicine and Enbrel for many many years. I believe that is with kept the disease from progressing faster. The last 5 years have been difficult as I started to develop muscle weakness and muscle spasms with pain radiating down my extremities. My neck and traps were in constant spasm. The rheumatologist ignored my frustration and pain and told me that maybe I was just depressed. In May of last year, i developed a strange rash all over my face. The dermatologist told me it was rosacea and he prescribed doxycyclene. Within 5 days my neck and back went into complete spasm and the pain was unbearable. I ended up in the emergency room when they gave me another diagnosis of acute kyphosis, skoliosis  and disc degeneration. My arm had  developed a tremor and I was losing fine motor skills .I was given 2 spinal blocks which made my symptoms even worth. Told I had no other choice, I had spinal surgery last July. Hoping that things would improve after a few months of PT, I did every exercise they gave me and listened to all their instructions. I went very slowly and optimistically. After another  “Rosacea” rash developed on my face the dermatoligist gave me doxycyclene and within days my back/spine went into spasms. This past December I experience another bout of fatigue which had plagued me many times over the years. But this time it was more intense as my words were jumbled and my thinking was foggy. I thought maybe it was hormonal and went to a doctor who specializes in women’s health. After running a complete panel of blood work she was concerned to see all of my blood work was messed up. I was dangerously depleted and needed infusions of vitamins to help. After about a month I started to feel a little better and the pain began to subside and I thought finally, I was on my way to recovery. But then the symptoms returned and again so did the brain fog, muscle weakness and the confusion. I had more tests done and it showed toxicity for heavy metals such as mercury arsenic and cadmium.  Then i got more labs showing H Pylori and parasites. When my friend was diagnosed with LD she urged me to go get a better test by a LLMD.  I made an appt and I begin reading book after book on Lyme. For the first time in my life, I was reading my history in these pages. The rashes, the myalgias, the chronic inflammation and strep throat, the multiple diagnosis,  Epstein barr virus with a positive number over 2300, irritable bowel syndrome , allergic reactions, the bladder infections that went into kidney infections without warning,   all the strange reactions when given antibiotics, and of course the neurological components .The LLMD  confirmed what I already knew and told me that I could have passed this on to my kids through the placenta. My greatest fear now became apparent: my son was hospitalized for a strange seizure disorder 3 years ago and they never found the cause. I know now, with all of their multiple symptoms, that my son and my two daughters have lime or the co-infections lyme. I am in the process of getting them medical help as well.
Maryland

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