Lyme Disease, My Story
I have been diagnosed with Lyme Disease and have been taking antibiotics since January 28th, 2004. Exactly one year ago. I have a groshong in my chest and administer 2g. of IV rocephin daily. This treatment has literally changed my life.
I have lived for 15 years in an area, which I refer to as, "deer tick haven", and it is literally infested. I have lived with this dreaded disease for many many years. After obtaining and reviewing my medical records for the last 15 years including all lab work and all test results that were performed, right down to my dental records, Lyme disease was suspected already as far back as 1991. Had the Dr.'s at that time been educated and aware of the clinical aspects of this disease, I could have been easily as well as inexpensively treated and spared the years of horrible suffering that I have gone through.
I have spent years going to Dr. after Dr. with the same symptoms, only to be tested and told over and over again that I was depressed or having anxiety attacks. Some of the problems, just to name a few were, headaches, sinus problems (balance or equilibrium disturbance), carpel tunnel, aching joints, heart palpitations, arrhythmia, edema, heart burn, vision problems, hair loss, sleeping problems and many more that I do not know the medical terminology for.
Then I had all the testing done on everything imaginable all of which came back normal so then I was given medications for depression and anxiety and of course my physical condition continued to worsen month by month, year by year till I was to the point that I could not walk alone because I had no equilibrium. I had to have the help of a friend to grocery shop, carry in and put away my groceries, Christmas shop, clean my home, you name it...she did it and to this day, she still does much of what should be my everyday responsibilities in my home that I can no longer do.
When I would ask my physicians about Lyme Disease, I would simply be told, "you don't have Lyme Disease" and made to feel as though I was totally insane and again, told you are just depressed and experiencing anxiety attacks. I am aware of what the clinical diagnosis of depression is and when I would tell the Dr. that I didn't feel I was depressed, at least not any more than anyone else would be if they felt the way I did, it angered him and he would rudely tell me I had to take these pills if I want to get better.
Finally, through a friend, I found a Dr. who was literate about Lymes; he listened to me and never once made me feel like I was wasting his time or just a ?hypochondriac?. He started the antibiotic treatment and within weeks to months, many of the symptoms dissipated. I had 33 of the 35 symptoms of late stage Lyme disease that would apply to me. I insisted on having a Lyme test taken and the Lab technician informed me that if the test were taken after 6 months of having the tick, it would come back negative. I told him that it was years and that I was also treated with many RA drugs. He informed me that I would never get a positive test because of the drugs that I had been given.
My Western Blot test did come back with bands appearing reactive, but not enough bands to be considered a positive test and reportable to the CDC. Isn't that in a way, like telling someone, "your kind of pregnant"? If the bands are there, they got there by a tick and the spirochete is in you. It doesn't mean you don't have the disease, it just means that it's not reportable. For the last 3 years prior to finding my current physician, a Rheumatologist had been treating me for RA, even though I had a negative test for RA, nor did I have the classic symptoms of the disease.
Based upon a clinical diagnosis made by her, she gave me drugs that worsened my condition. She had me to the point of taking some medications that have such severe side effects, it is recommended that this form of therapy should be discussed between patient and Doctor to determine which is more beneficial, the benefits that the drug has on RA or not taking it because of the severity of the side effects. I questioned her on taking this as I had never seen a positive test and as I mentioned earlier, I did not have the classic physical symptoms of RA. Never once did she test me for Lyme or even discuss the possibility of having it. She told me I needed psychiatric care.
The money spent on unnecessary drugs is an unthinkable amount. The loss of the quality of my life is even more unthinkable and inexcusable. I decided to get ALL my medical records for the last 15 years, including all lab testing, hospital reports, right down to my dental records. How interesting........Lyme Disease was suspected as far back as 1991, again in 1995 I seen a Doctor with "dime size lesions under my breast" that he didn't know what they were so he has written, "probable" ringworm. I grew up on a farm, I know what ringworm is, how it spreads and that you get it from an animal. Strange that this "these lesions" simply went away with time, but I became more and more sick.
I continue to experience a great deal of pain and will probably do so the rest of my life, that is the unknown. I continue to experience the excruciating headaches, the horrible pain that used to send me reeling into the emergency room thinking I was having a heart attack, only to be tested over and over and told, ? Your heart is fine, you?re having an anxiety attack?. Although they have lessened, many of the symptoms continue to occur. The joint pain is excruciating. I am lucky enough to have a large, very tolerant dog, who when I get down into a position that I cannot get myself back up, will come and allow me to use her to pull myself up again. (I had a special harness made for her so that my weight would be evenly distributed across her withers and not hurt her).
I can?t imagine being able to get down on my hands and knees and wash a floor; I can?t even bend down to get things out of the bottom of my cupboard or refrigerator. I wonder what it would be like to sleep through a night without being awakened by pain and having to rely on medication to at least get 4 hours of sleep. The fatigue is something that only another Lyme patient could understand. I wonder what it would be like to not have every move I make, take all the strength I have to do it. What would it be like to be able to do what the average person considers an everyday chore and does it with ease? For me, doing a simple task can have me on the couch for days to recovering from the pain it caused.
I lost my job in October of 2002. I went through vocational rehabilitation to no avail. Vocational Rehab sent me to apply for Social Security Disability, which was denied and is now in appeal. I received word that a decision had been made on January 12th and sent out, only to be ?randomly? pulled. Now my claim sits in Chicago, to be reviewed again. My understanding is they have the right to reverse whatever decision had been made in Madison. I have suffered not only physically but also mentally and financially as well. I will await this decision.
In the meantime, I have been keeping a journal on my treatment. It documents my treatment, sometimes hour by hour and sometimes day-by-day, it describes my reaction to the medications, what I experience and how long it lasts. I have photographs of various things before, in the beginning stages of treatment and current photos that can prove that my Dr. is on the right course of treatment and has found the right combination of antibiotics. My reason for doing this journal is in hopes that someday, a Doctor can read it and possibly help someone else by the information they may obtain within it. If what I have documented can help one other Lyme patient not have to go through what I have for the last 15 years, then everything that I am doing will be worth the effort I am putting forth in doing this.
October 29th, while already on treatment for Lyme, I was re-infected, not once but twice. I had 2 tiny little spots that one would probably not even notice, they were deer ticks. (I still have them stored away in the freezer). This tick bite was different than others I have heard of; there was immediate, excruciating pain. There were 5 people out of the 10 in our group that had bored in ticks that day. 4 of us literally sat around and did nothing because of the pain. I had the typical bulls eye rash. I have pictures to prove this. It?s a shame when one has to feel they need to take pictures to prove to a Doctor that they had a tick and also the rash, without this proof, this information is just simply discounted and ignored by the physician.
There was a broadcast on the today show, which aired on December 1st 2004. I feel like I could have been the one they were interviewing. This is what it was about; Today show on NBC !! Dr. Burrasco was on it too. The story was done by a woman who works for ESPN as a reporter. She had Lymes for 7 years and was not treated because she had a "negative" test. She went on to explain how she finally got a Dr. to treat her but didn't dare mention his name because of him losing his license if he was found out. It also went on to explain a treatment she had that was 31 days, she had to go into some kind of an oxygen tank and had something put directly into her heart. It did nothing the first 29 days and on the 30th day; she said all symptoms were GONE.
She was this Dr.'s guinea pig, part of the treatment she had was the hyperbaric chamber, along with what I am sure she was referring to, was IV rocephin administered through a groshong, just like mine. Her point in airing this story is to educate the public on this horrible, misdiagnosed disease and hopefully help others obtain the long needed help they have to this point been denied.
I believe it is very important that Doctors take into consideration where the patient lives as well as the lifestyle the patient leads. In my case, I probably have more ticks in a summer than the average person who lives in the city would have in a lifetime. I have never been so much as asked by a Doctor about where I live or my outdoor hobbies even after I bring up the subject of Lyme disease. Once again, if I bring up Lyme, I am simply told...you don't have that.
I really feel that the general public needs to be informed as well as educated about this disease and the devastating effects it can have if not caught early and treated correctly.