In the summer of 1990, we lived in the country on 10 acres that our family bought. It was prairie land and we had cleared it and put a home on it. I had read about Lyme disease and so had my husband, but the last thing in the world I thought I would get was Lyme disease. I enjoyed getting out and mowing our big yard with a push type mower for exercise. We mowed about 2 acres of it and kept it short as we thought this would keep down the number of ticks and other insects.
One night as I was getting ready for bed, my husband noticed something on my side. He asked me what was wrong with it and when I looked, it almost looked like a large bruise to me. It was a rash though and I didn't know how I got it. There was no tick there at the time. It had evidently fallen off. Upon seeing it, my husband made the comment that it looked exactly like the bull's eye rashes that he had read about in his hunting magazines. He insisted I go to the doctor the next day.
I got an appointment and luckily, I had no problem getting in. My general physician took one look at it and also agreed that it matched the pictures of the bull's eye rashes for Lyme disease. So he immediately started me on Doxycycline. He prescribed 100 mg three times a day for two weeks and said that should clear it up. He also had me go to a local lab and take a blood test for Lyme. The blood test came back negative. I thought it was all a false alarm but went ahead and took the prescription anyway.
I felt fine at the time, didn't know a lot about Lyme and really didn't care as long as I felt as good as I did.
About two years later I developed Bell's Palsy. I went back to my general physician as I thought I had a stroke, although all I had was paralysis on the left side of my face. He diagnosed me with Bells Palsy and gave me 7 days of a corticosteriod. It miraculously cleared up. A few months later my right breast started feeling numb and it worried me, as I was constantly checking for lumps since I thought that was unusual.
Then my right shoulder joint started feeling like it was out of joint and hurt quite a bit. I went to the doctor and he couldn't find anything wrong with my breast, and he gave me some exercises to do with my shoulder to help it. After a month or two of doing these exercises, my right shoulder seemed to get better, then my left shoulder started hurting and aching. So then I started the exercises for my left shoulder that I had done previously for my right shoulder.
This time, the exercises didn't seem to be helping like they had before. My neck also started hurting, and it felt like I had a crick in it everyday. It was even hard to drive our car and be able to look both ways for traffic. I felt like there was definitely something going wrong, but I didn't know what it could be. I went back to the doctor and he told me I was getting arthritis.
I was also noticing that my left hand was getting numb and asked him about that. He said it sounded like carpal tunnel syndrome. I couldn't imagine having carpal tunnel, because at the time I wasn't doing anything that would normally contribute to that. Anyway, within a few more months, my feet and legs started getting numb and I noticed I was stumbling occasionally. I waited before going to the doctor, thinking that it would all just go away.
Then one morning - March 1st 1997 - I got up and noticed that my lower back felt like it had a knot in it. I thought I must have done something to injure it but upon rising every morning after that, I noticed that it seemed a little worse than the day before. I went to the doctor again and told him about all these problems. By now I was also aching a lot and mentioned that to him too. He couldn't find anything wrong with my back upon examination, and I felt like I was going nuts.
He gave me an antidepressant called Elavil and told me that should help some. I went home and started the medication, along with an antibiotic for a sinus infection I seemed to be having as well. About 3 days after starting the Elavil, I was shopping, and felt like my legs were turning into rubber. I went home as quickly as possible and decided not to take the Elavil anymore. My lower back was starting to hurt constantly, and I would be in tears at times because of the pain.
My stumbling got worse and I walked like a drunk. The numbness was also getting worse in my legs and body. I was sleeping most of the time, and the headaches I was having seemed to be getting worse-I had never had headaches before. I also felt like I had a lump in my throat and was afraid it might be cancer. I didn't tell the doctor that part as I was starting to get really scared by now, and thought the worst. I had trouble sleeping at night, but didn't have enough energy to do anything in the day but lay down and rest, or sleep when I could.
I was having shortness of breath, and the doctor said that was probably the beginning of emphysema, since I am also a smoker. I was losing faith in the medical profession by this time because he never wanted to test for anything, but rather, just tell me some more good advice and send me home.
I started reading up on MS and other illnesses to see if any of my symptoms matched any of those. Some did and some didn't. It was my husband who one day said to me, "You know your symptoms are starting to match Lyme disease." I said "that's impossible. I haven't had a tick bite since 1990, and this is 1997./p>
Besides that, I took 2 weeks of Doxycycline and I thought that would take care of any problem I could have related to Lyme disease." He told me some stories he had read about hunters in his magazines who had similar problems, and their problems spanned many years before they got diagnosed. Doubting that, I went to the library the next day and checked out the book called Coping With Lyme Disease. I started reading it, and the more I read, the more I saw of myself.
I went to the phone and called my general physician, and told him I thought my Lyme problems from 1990 had come back. I demanded to have some antibiotics for it. I was in tears and so thrilled to know what it finally was. He said he doubted that it was Lyme, but went ahead and gave me 2 more weeks of Doxycycline, and had me make an appointment to see him. When I got in to see him, he told me there was a Lyme literate neurologist here in town and that I should go to see him.
I was thrilled - it looked like I was going to be lucky and not have to travel a great distance to find a Lyme literate MD (LLMD), as mentioned as a possibility in the book. I had to wait several weeks to get in to see the neurologist. At my appointment, when I told him I had Lyme disease, he told my husband and I that Lyme disease did not exist in Oklahoma, and he seriously doubted it existed at all. He informed me that I had either MS, Fibromyalgia, or Lupus and he had about 20 different tests he wanted to run on me; none of which was a Lyme test.
When I pointed this out to him, he then added a Western Blot but said it wouldn't show anything. I left feeling like he was totally missing any of the symptoms. I went home depressed and hated the thought of having to travel out of state for a LLMD. My husband and I both felt it was Lyme, and so about 2 days later, I called a support group in Missouri and talked to a woman who gave me the name of a LLMD in Kansas City, MO. There was a 3 month wait for the appointment and it was a four hour drive each way.
I had to be off antibiotics for at least 7 weeks before the appointment. By the time I got there, I could hardly walk and I ached so bad, I felt like I was dying a slow death from the inside out. I had brought all my medical records with me and the LLMD reviewed them all, and talked to us for about an hour about Lyme and how hard it was to diagnose. He explained that since I had already taken some steroids and antibiotics, I might never get a positive on a test, but that didn't mean I didn't have Lyme.
I told him I had already taken about 7 weeks of Doxycycline before making the appointment with him and I had noticed that my back was slowly feeling better. He told me if I noticed any improvement at all, that was the drug of choice. He gave me a 1 year prescription of Doxycycline, and that was the beginning of my slow return to living a normal life. He explained that there was no cure for Chronic Lyme at that point and I would have to stay on the Doxycycline until a cure was found.
I began taking the medication religiously every day and didn't miss a single pill. I bought a pill case that would hold a morning, afternoon and bedtime dose. I read the directions closely for Doxycycline and noted that some tetracyclines shouldn't be taken with dairy or vitamins; acidophilus was to be taken 2 hours before or not until 2 hours after taking the medication. So I adhered to this regimen. I didn't want to take any chances at all for it not to work.
During the first two months of taking the Doxycycline, I had a lot of problems with reflux and stomach burning, but most of the time I just tolerated the problems, as they seemed a small price to pay to get better. The first few months, the progress was very slow, and at times I wondered if there really was any progress. But still, I trudged on because the numbness in my body had started to go away and little things started to improve. I held on to each little thing that improved, telling myself I was getting better.
When I first accessed the Internet and met other Lyme patients, I questioned whether I was going to get over the Lyme. Everyone I talked to seemed to think Doxycycline would not help, although I knew that I was slowly starting to feel better. Luckily, I trusted my instincts and stayed on the Doxycycline and most of my symptoms diminished. I still had a few joint aches after 15 months on the antibiotic and thought they were Lyme related.
I went back to see my LLMD in February, 1999 and he was thrilled to see the progress I had made since he had last seen me. I weighed 180lbs the year before, but had worked on losing weight, and by that time had lost 40lbs. I felt I was 95% better. He then said that he was going to put me on 400mg Suprax two times a day and I had read about many Lyme patients taking Flagyl as well. I suggested adding 500mg three times a day of Flagyl, and asked if it could be safely taken with the Suprax. He said there shouldn't be any problems as long as I also took acidophilus.
I only took the Suprax and Flagyl for about 2 months as that is when I started reading and researching about silver. I joined a list that had about 300 members discussing silver and its different uses. Several had taken it for many years preventatively for colds and various other things. I decided at that point I had to try it.
At first I started out making my own and took that for a month. After a month, I completely quit all of the antibiotics I had been taking and started buying a form of Silver that is called Ionic, as the particle size was smaller and the concentration was higher in parts per million. I knew that what I was making wasn't that consistent and was too low in parts per million. I have now been taking the ionic silver since May 30, 1999. In addition, I started going to the YMCA every morning to work out, and spend about 40 minutes total in the hot tub and sauna there.
I spend about 10 minutes in the hot tub and 10 minutes in the sauna before, and after my workouts. I am still making progress and gaining more muscle where I had previously had none. At this point, I feel like I am better than I was before Lyme. I also visited my chiropractor once this year to get my back and shoulder realigned, and it seemed to help a lot. Before the antibiotics though, I would go to my chiropractor and the treatments didn't seem to help, but only seemed to make me worse.
I still take the silver and I still work out daily at the Y and I am finally enjoying life. I have a dear friend at the Y who is a certified Physical Trainer, and he has helped me a great deal to overcome a lot of the obstacles I had encountered. He could look at me and tell what muscles needed to be worked with, and how to start slowly so I wouldn't injure anything. The Lyme had weakened my left side which, at this point, has improved 100%. Because of the type of slow exercises I did, with his expertise in knowing how to avoid injury, I have made great headway and feel greatly indebted to him.
I realize that a relapse could happen, but I hope daily that I can keep it all under control. I am 45 years old at this time and I weigh 140lbs. The weight loss seems to have made a big improvement in my health as well. Every day now, is just another adventure in my life and I plan to live it to the fullest. It has given me a greater love of life than I had ever known before. I will always remember the time when I thought I was going downhill and would never be able to make that climb back up and seriously thought of ending it all. I am so glad now that I didn't make that mistake, which it clearly would have been.
My best advice to anyone with Lyme is to hang in there; it does take a while to eradicate the Lyme from your system, but it can happen.
My Lyme Success
The Lyme Disease Quilt Page
Please click on the mailbox to send me your comments
Lyme Quilt main page
Lyme Disease related links
Copyright ©1998-2001 The Lyme Disease Quilt Page