John B's Story
My Name is John and I am an ex-insurance adjuster who has had Lyme Disease for over 5 years now. I am presently treating with Dr. Eiras in Jackson, NJ, and on antibiotics. My problems started in April of 1994 when I got sick for no reason at all. I though I had the flu coupled with stress. But as time went on my symptoms got worse and worse.
I had severe fatigue, and very bad abdominal pains. I also had severe rectal pains which I later found out was prostatitis(I was told at the time I was too young to have this). I had very limited orthopedic symptoms at the time, no rash, and did not remember being bitten recently by a tick, etc. I went first to my family doctor, who missed the diagnosis of Lyme and Prostatitis, and he sent me to a Gastroenterologist who prescribed several stomach medicines to no avail.
I asked the Dr. to do several tests including tests for Lyme disease, Cancer, and AIDS. All tests came up negative. I got so bad that I was hospitalized and had several tests done. While in the hospital my blood pressure rose dramatically for no good reason and I had a cardiac evaluation done, which was negative. My problems got worse and worse by the minute. I was seen in the hospital by a pyschiatrist and since all of my tests were negative, was told that my problems were in my head, and due to stress. I was discharged from the hospital.
AS the weeks and months went on I only got worse and worse. Several months went by and as my symtoms got progressively worse I found it hard to function and could barely keep working. I started to lose some time from work and my employer started to question the legitimacy of my problems. I started to contact doctors that I had known for years through my insurance job, in hopes that the could point me to a doctor that could help me.
I went to several doctors that my contacts recommended but they could not help me. I finally was seen by a urologist due to my prostate problems(unusual for a 28 year old man). I was also seen at the same time by an internal medicine doctor. The uroloogist put me on an antibiotic that not only helped the prostatitis, but also started to help my other symptoms like the fatigue, muscle spasms, stomach problems etc., that I was developing as well.
When I told my internal medicine doctor the results of the antibiotic treatment, he dismissed this as a "plecebo effect" and the antibiotics were discontinued. I got worse. I stopped going to the internal medicine doctor, and saw another stomach doctor who ran all kinds of invasive tests to find out what was wrong with my stomach, with no results.
After several months of trying to help myself using all of my insurance contacts, I was diagnosed with Lyme by a rheumotologist and by a Lyme literate doctor, several months after I first started to have problems. I had had several negative Lyme tests up to this point, but had my first positive test about 8 months later, when I was put on a regimine of biaxin antibiotics by my Lyme doctor. I have had several positive and negative tests since that time.
After treatment for sometime, I reached a plateau and stopped all antibiotics. No one could tell me if the Lyme was still active or if I was just suffering from residuals of the disease. I still had prolems, but I was able to still function. I switched jobs to another insurance company and got married, to my long time girlfriend. I even ran for town council and won. I was advised by my doctor at this time that it was probably ok to do this as the Lyme seemed somewhat tolerable.
Within a year later my symptoms became worse and worse again to the point where they were intolerable. I was under a lot of stress from my job in insurance. My Lyme doctor, not knowing what more he could do for me sent me to a dotor in NYC who specialized in homeopathic medicine. She tested me, looked at my blood under a microscope, and told me I didnt have Lyme but that toxins and residuals from the disease.
I started on this doctor's progam with limited success, but my symptoms soon returned with a vengeance, and I was getting worse and worse. I had to pay out of pocket for thousands of dollars of medical expenses that were not covered by insurance. During this time it became impossible to work, and I was fired by my employer, an insurance company, due to my inability to work.
I am still presently having severe problems due to
Lyme disease, and as I have severe pain in my hands, it is even hard to type my story. I am still treating for Lyme disease with a fantastic doctor who along with her husband, has Lyme disease, herself. I have to take several different antibiotics a day along with intramuscular injections of bicillan. I am presently fighting with disability carriers and medical insurers to get the benefits I desperately need.
These are the same kinds of people I used to work for in defendng their interests in my day to day claims handling. Now they are denying me benefits I need. I have had to hire an attorney to help me fight to get the medical and disability benefits I need to survive. I have had to lean on family and friends for support and am now in debt to the tune of several thousands dollars.
The worst of it is that I am unable to work and am still suffering daily from this most terrible disease.
I hope you will forward my story(which is very incompletely stated here) to the proper people. I hope this helps. Please feel free to contact me if I can help further. God bless and Godspeed.
John
I would like to see the 20/20 story focus on the problems of diagnosis of the disease; the still continuing misinformation regarding the true nature and spread of the disease. I would also like for them to examine why the medical industry rushed, and is singing the praises of a vaccine that has not been tested on all age groups, and that only has 75% effectiveness.
ALso, isn't it interesting that insurers want to deny Lyme claims and insist that Lyme is all in people's heads, but that we need a vaccine to deal with the problem? Is there a Lyme problem that we need a vaccine for or not? They cant have it both ways.
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