Donna L's Story

Twelve years ago my health went from excellent to poor. That was the era of Epstein Barr viral syndrome and the "Yuppie Flu." Well that wasn't all there was. I am a nurse, and at the time of my drastic health change, was employed by an internist/endocrinologist (who was also my physician). My first symptoms presented as a flu-like illness, overwhelming fatigue, liver enzymes that were well over one thousand, and severe pleural chest pain.

I had been admitted to the hospital twice during the month and had every test known to mankind... well... all but one test, I suppose. With the sky high liver enzymes, my physician worried that I may have been exposed to hepatitis in the office; so all the hepatitis screenings were done while hospitalized and they,too, were negative. So now we worried that I may have another pulmonary embolism,as was in my history. No,that was negative also.

One thing that I was very fortunate for was that my doctor/employer knew that I was not "crazy" and never suggested that. Well... he was probably the only one that never suggested that. There were many who did. He knew that I was a healthy person and he felt badly that he couldn't come to the correct diagnosis, even after months of trying. He felt that he was too close to me so he called in many others on consult while I was in the hospital.

This began my quest for a diagnosis and the correct therapy. After I was released from the hospital I became very ill with severe headaches. You all know the kind -- the type that you have to go to a quiet room and not move a muscle... the kind that you needed the blinds drawn even on a cloudy day to save yourself some pain... the kind that you needed the blanket pulled up over your head but even the weight of the blanket hurt too much.

Next came the incapacitating joint pain. I needed to take quite a bit of time off from work and have more testing done. During these months I had more and more pain. One of another of my diagnoses was seronegative rheumatiod arthritis... finally I did have some kind of diagnosis... and some medication to take that was going to help me with my joint pain. I was given Prednisone, a steroid, to take.

Steroids are one of the worst medications that someone with Lyme disease can take, because they supress your immune system and won't allow your body to fight off any infections. They will not ever let your body build up antibodies to that bacteria, so your Lyme ELISA will never be positive. Eventually I was taken off the Prednisone at my request, because of all the side effects that were possible. But then I was given Immuran and then Methotrexate, other immunosuppresants to help me with my "rheumatoid arthritis." Eventually the side effects took over and I was taken off of those drugs also.

So my search continued. Throughout the next 3 years I had seen 12 physicians, many neurologists, rheumatologists, orthopedists, infectious disease physicians, other internists, and pulmonary disease physicians. Some told me that I must be depressed, and asked me if I was happy in my marriage; they told me that the stress of a family is something that I would have to learn to live with, and one rheumatologist told me that my joint pain was probably that I needed orthodics in my shoes!!

The pain continued to worsen in my joints, the headaches continued, I was unable to speak in complete sentences because I couldn't find the words, I would forget where I was driving, forget where I parked my car at a shopping center, I was unable to read a book because I had to reread every page 2 or 3 times. And the worst thing of all... I was unable to take care of my children and husband. My children were 21/2 and 71/2 when I became ill.

I did get a trial of Doxycycline (100 mg. BID) by my physician just in case this was not a viral illness. I had to stop taking them because I got worse... all my symptoms worsened... and at that time I believed they were doing me no good... little did I know at that time that I was experiencing a Herxheimer reaction. No one knew.

So the suffering continued, the pain increased, and was migratory. There were days when I couldn't get out of bed... and those days got more frequent. My family was suffering as much as I was. I had to have reconstructive surgery done on my hand to have the arthritis cleaned out, and tendons and ligaments reconstructed due to a severe synovitis.

Finally I had heard about a physician who was going to speak in my area about Lyme disease. He had treated many Lyme patients and I had heard by word of mouth that he knew his stuff. What did I have to lose?? I sat and listened to the physician speak about this unknown disease in my area and thought... he is speaking about me... it was as though he had read my medical file. I knew that I had to get an appointment with this physician.

His office was over 4 hours away but I needed to get the proper diagnosis and treatment. My physician called the physician's office and made an appointment for me. It was still 7 weeks away but I finally had hope that I would be receiving the proper treatment. I was thrilled. I finally had a Lyme literate physician! Testing was done at my first appointment... a 2 hour appointment with this doctor.... finally someone that took longer then 15 minutes with me... someone who was actually listening to me... someone who believed that I was ill.

At my second visit I had gotten all the test results and began treatment for Lyme disease. I finally had a real diagnosis!! I am still being treated for this disease along with the other coinfections that come with just one tick bite, but I know that I do have a correct diagnosis and I pray that someday I will be back to my old self.

I did have to leave my job and felt a loss of a sense of self when I did so, but what is important, is to regain my health. I do have permanent damage from this horrific infection, but I still feel fortunate to wake up everyday, even if I don't know what the day will bring. I have lost many of those that I called friends due to this illness, but I have made many other friends with this illness.

I am truly blessed to have had my family stick by me and contribute all that they do. I have watched my children grow and I imagine that they do have emotional scars from what they have gone through. But they have also developed a sensitivity to those who are ill or disabled. All that I have gone through so has my family... and now all we can pray for is a cure for this disease so that others do not suffer like those of us with chronic Lyme disease.

Donna L.

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