Lyme Disease in the Southeast: Ms. Dora, RN

Reblog
StillASouthernGal makes no assumption of authorship or creative materials ownership.
All Rights Reserved and Retained by Original Poster,
via Georgia Lyme Disease Association
Originally Posted HERE
By Georgia Lyme Disease Association

Dora’s story, as shared by Georgia Lyme Disease Association:

“Prior to getting Lyme disease, I was a rehabilitation RN and traveled across southeast Georgia. My husband and I were runners and I could easily run five mile races. We built our house in Hinesville on what was previously part of a deer hunting range. I enjoyed working with my flowers, in our garden and gathering wild flowers in the woods.

On April 25, 1988 I was 58 years old. I went to the doctor with a bull’s eye rash on the back side of my right knee. It was hot to touch and had a red ring around it with a central pallor. I also had joint pain, which was unusual for me. I am a nurse but was unfamiliar with Lyme at that time. I did not see a tick. I was given prednisone.

By early May, the doctor drew blood for testing, because I now had a rash behind the knee and also the elbows. I continued on prednisone but soon returned to the doctor with flu- like symptoms with fever and chills, an upper respiratory tract infection and pain in the right temple with nasal congestion and cough. I was given the antibiotic, Cipro and a decongestant.

I saw the doctor again because of abrupt onset of severe mid back pain on June 22. X-rays showed a tender point at T-ll. In October, I had laser surgery for a hole in the retina. Tests showed choreoretinitis and uveitis. I saw the retinal specialist regularly until he retired.

I continued to have bizarre symptoms; muscle spasms, periods of dizziness, etc. I consulted an orthopedic specialist in July, 1990, who said I had multiple problems including thoracic pain, lumbar spine pain, pain radiation into both legs and in the right knee and both hands. He noted it seemed to be some kind of systemic thing. Tests appeared normal and I was placed on Feldene for possible arthritic flare.

The strange symptoms worsened. On September 14, 1990 I was hospitalized for upper abdominal pain and projectile vomiting. My abdominal ultrasound was mostly unremarkable. Next,a chest x-ray showed pulmonary emphysema and chronic granulomatous changes (note: I have never had emphysema nor smoked). This was followed by an acute urinary infection.

By mid-September, my daughter, a nurse in Atlanta, convinced me to fly there to see a doctor for my numerous, bizarre symptoms. While on the airplane, I began to feel numbness on my right side and I could not pick up my left foot or use my left hand. I began to have chest pain and had difficulty breathing. I was met in Atlanta by an ambulance and was taken to the coronary care unit at Northside Hospital. I had atrialfib and sinus tach and borderline ekg while in the ambulance. In the hospital the Dr. did a stress ekg for four beat runs of v-tach and intermittent chest pains. The symptoms abated and I was sent to a pain clinic. I was diagnosed with costochondritis, fibrositis, chronic low back and cervical pain. The doctor thought I had depression, also. He did trigger point injections with steroids and I was discharged.

Since I was a nurse, I knew I was really sick and needed help. I was driving at work on my job one day and did not know where I was, where I was going and what I was doing there. When I came out of it, I realized I could no longer do my job. I was becoming desperate.

By this time I began hearing about Lyme disease. I went to a rheumatologist in Savannah. His x-rays showed degenerative changes in the cervical spine, right knee and hands. I asked him to do a Lyme test. The Elisa was positive at 1:47, Western Blot neg, and an elevated ANA. I was told that the Elisa must be a false positive; he thought I had fibromyalgia.

I began to have severe occipital headaches and became highly sensitive to light. All symptoms were getting worse, I couldnt think clearly and had trouble making my words come out right. I began transposing numbers.

Miraculously, in 1991 I contacted a nurse in Augusta who could no longer work due to the same kind of problems. She made an appointment with a doctor in New Jersey, who was keeping up with the Lyme research. I flew there and was admitted to the hospital and diagnosed with Lyme disease. A PICC line was inserted and after a few days I flew home to continue with IV Claforin for a month. After that I was on oral antibiotics for some time.

I did quite well until the next year when I became extremely dizzy and disoriented. I was sent to a neurologist who said it was from the Lyme. I was treated with Rocephin IV for 5 weeks. I started feeling like my old self and was discharged. I was doing well.

I was in remission for several years. In 1996 I had intraductal breast cancer and had a left mastectomy and removal of five lymph nodes. In January, 1999 I had a flu shot. All the old symptoms came back again and I felt I was back to square one.

Dr. Kenneth Gresen in Hinesville became interested in Lyme. He began to test people in the community that had similar symptoms and began treating them along with me. The first Lyme test he ran was negative. After he started the antibiotics, I came up with an Igg. 23, 41 and 66KD on Western Blot, but the Elisa was negative and the PCR was, too. My EKG showed left bundle branch block and a minor v-conduction defect of unknown origin. The doctor treated me with a regimen of different antibiotics ranging from doxycline, ceftin to flagyl for the cystic lyme and ended my treatment with bicillin IM injections. (Sadly, Dr. Gresen later died from cancer.)

I was able to return to work the first time in ten years! I worked for a couple of years with Hospice before I could not hold up to the physical demands of the job.

In 2002, I began having knee pain. My Lyme test was negative, but my sed rate was 47 and ANA 1:32. By 2003 my knee pain became severe. I had double knee replacements because of complete destruction of the knee cartilage. I also had double cataract surgery that year.

I had an enlarged lump in my left side of the neck in 2004. A salivary gland was removed that was benign but filled with old infection type material.

I was referred to an Infectious Disease specialist the following year. She said by then Lyme was chronic and nothing else could be done. Since then I have had chronic shoulder pain, arthritis, fatigue, etc. but I get by on Darvacet for pain and Doxepin for sleep to alleviate leg and foot pain.

I am so thankful and blessed to have had a few wonderful doctors who believed in me and took a chance on me by treating me aggressively with antibiotics. I do believe for chronic pain the flagyl, ceftin and bicillin injections brought me back to where I am now. But I believe the IV antibiotics saved my life.

I try to spread the word about Lyme being in Georgia.”

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SouthernGal here… Ms. Dora is a fellow healthcare professional. She, too, suffering far too long for such silliness as geography. Y’all pay attention to the dates in her story. I live two hundred miles from Ms. Dora. Yet, Georgia has “had” Lyme Disease since the late 80’s. They are also advocating for improved treatment standards and testing. Here in Alabama, we would like to start by just being recognized as legitimately affected by Lyme Disease. I continue praying for options and a cure- for all of us.