So here is my story from the notes I wrote down during that time (I highly recommend making notes). I wrote down that my first symptoms which I attributed to Lyme began May 1990 when I woke up and my wrist hurt when I lifted a spoon. The doctor, who was then my primary care physican, put me on 100 mg of Doxycyline 2 x day for 1 month. The prescription, written 9/10/91, had 60 capsules. I didn't start writing about my various aches and pains until Jan. 1993. I left this doctor when he complained I was seeing him so much with aches and pains he wasn't making any money on me. Can you believe that?! Besides that, when my aches and pains came back after finishing the Doxcycline, he told me I was cured because I had taken the prescribed dose. It didn't matter to him that I still didn't feel better. I was having roving aches and headaches and a stiff neck. I found a local Lyme disease support group and joined it. In 1992, I switched to another doctor that was recommended by people in the group.

This second doctor prescribed Indocin, 25 mg, 40 capsules (don't have how many x per day on any of these) and on 7/31/92 started me on 600 mg. of Motrin daily for aches. On 9/14/92 he started me on 75 mg of Voltaren 2 x/day. On 1/25/93 I was on 30 capsules of 100 mg Ansaid as of 1/25/93 (anti-imflammatory).

These are symptoms I have listed in my 1993 entries: I had headaches, and aches on my rt foot and knee, sometimes on the left knee, stiff neck, left wrist & inside the left elbow, right wrist hurt & inside elbow hurt, right hand ached when moved fingers, right shoulder hurt, rt hip at top of thigh and back hurt. These didn't all hurt at the same time. The pain moved from one place to the other on various days, months. I wrote that I took my husband's Polymax, 500 mg 3x day in July '93. 10/2/93 the second doctor prescribed Chlorzoxazone which is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain. Chlorzoxazone is used, along with rest and physical therapy, to treat injuries and other painful muscular conditions. This is what's written for 1993. The second doc prescribed mostly anti-imflammatory drugs while I saw him. He did lots of tests like for lupus etc but nothing came up positive and I was lumped into the Fibromyalgia categoy. I wanted to switch to the other doctor in the practice but didn't want to hurt the doctor's feelings that I was seeing.

I was glad when my second doctor left the practice and I began seeing his colleague 2/4/94. Fortunately for me, this new doc decided to treat me clinically. My Western Blot was not considered positive because I only had 2 postive Lyme bands instead of 5. The bands that were positive were ones you usually see with Lyme though, so it should have been a red flag to a knowledgeable doc.
I was still having pain in right shoulder, headaches, pain on right foot and now on rt ear, and in my right jaw with pain sometimes shooting down my arm to my hand.

In March '94 my third doctor prescribed 250 mg of Zithromax taken 2x day for 1 month.
On 4/15/94 he switched me to 100 mg of Doxycyline 3x day for 2.5 weeks because Zithromax was giving me stomach cramps because it had to take on empty stomach. When I switched to Doxycyline I still had stomach cramps but not as severe and they were bearable. When I was previously on Doxycycline I had no stomach cramps so my stomach was probably sensitive because of the Zithromax. My legs itched at night when on Doxycycline in April. The itching stopped when I stopped taking the Doxycyline. I wrote down that the Doxycyline seemed to wear off between pills and the aches came back.

5/2/94 my third doc switched me to 500 mg of Biaxin taken 2x day for 30 days to be taken with 400/80m of Bactrim 1x day and 50 mg of Cataflam 3x a day as needed for anti-imflammatory. He kept me on Biaxin and Bactrim until July 18, 1994 which was 2.5 months. The Bactrim makes you sun sensitive like the Doxycyline does. You can take Biaxin with food. You're supposed to drink extra water the Bactrim for the kidneys. I got a rash on face & body on 5/22/94 from the Biaxin but not highly itchy and continued on medication though cut down on number of times per day taking Biaxin for that week. Even though I was on these medications, I recorded having a stiff neck on 6/5/94 so all symptoms not completely gone.

July 18, 1994 I stopped taking Biaxin and Bactrim because I had appt to see rheumatologist (don't ask me why I thought that was a good idea- I must have thought the tests would be more accurate if I wasn't on antibiotics at the time). I saw the rheumatologist on July 20th. July 1994 was still experiencing headaches, back ache and shoulder ache. In August 1994 I still had usual aches and pains but now had pain in my left and a new symptom; tingling in left thigh on outside part of leg (tingling like when your leg falls asleep then wakes up, and a feeling of numbness). The area had heat like Ben Gay feels like. Sept. 1994 still had numbness on outside of left thigh but had diminished to every couple of days and only briefly feels like needles and pins and heat sensation and numbness. Also had stiff back.

On 9/11/94 third doc put me back on Biaxin for 10 days. He took blood for another Western Blot test. I told him that my rt knee & ankles were hurting and headaches starting more frequently again, rt shoulder pain and sore at nerve on back right side of head- also had a bump at base of head (swollen lymph node). I had felt better for most of August til 9/12/94. Dr. Davis said to take Aleve instead of Motrin and to exercise.

I wrote in my notes that between seeing Dr. Davis 9/12/94 and now 4/15/95 I just had some aches off and on but not persistant, only a day here or there. But beginning 4/15/95 my left foot was now aching again and my rt shoulder aching daily with rt knee aching off and on. Aching was noted as not as severe as before but I was concerned that the pains were coming back.

4/28/95 third doc took blood for Western Blot and Lyme titer which still came back as not meeting their criteria for positive for Lyme. I don't have notes on what was prescribed at this time.


5/10/95 my right shoulder and arm were aching, my right ear was aching, and right side of my back. Third doc put me Erythromycin instead of Biaxin along with a antihistamine/decongestant.

6/11/95 still having some pains in rt ear, rt jaw, rt foot, left side of back. I don't have record of going back to doc and going on any antibiotics for this but wrote it down anyway. October 1996 my third doc closed his practice and moved out of the area. I have been symptom free for the last 10 years!

So here's a listing of medications:
9/10/91 100 mg Doxycycline (antibiotic)-
7/31/92 25 mg Indocin, 40 capsules (anti-imflammatory)
9/14/92 600 mg Motrin (anti-imflammatory)
9/14/92 75 mg Voltaren 2x day (anti-imflam)
1/25/93 100 mg Ansaid 2x day (anti-imflam)
10/2/93 500 mg Chlorzoxazone (muscle relax)
10/2/93 300 mg Lodine (anti-imflammatory) D
12/23/93 50 mg Zoloft (trying to adjust seratonin levels to see if that would help)
(read info on Zoloft & decided not to take)
March '94 250 mg Zithromax 2x day for 1 mo. (antibiotic)
4/15/94 100 mg Doxycycline 3x day, 63 tabs(antibiotic)
5/2/94 500 mg Biaxin 2x day, 30 tabs (antibiotic)
5/2/94 400/80m Bactrim/Sidmak 1x day (antibiotic)
50 mg Cataflam 3x day (anti-imflammatory)
5/17/94 500 mg Biaxin 2x day, 30 tabs (antibiotic)
5/17/94 400/80m Bactrim/Sidmak 1x day (antibiotic)
5/31/94 500 mg Biaxin, 14 tabs (antibiotic)
5/31/94 80 mg Bactrim, 14 tabs (anitbiotic)
5/31/94 50 mg Cataflam, 3x day, 25 tabs (anti-imflammatory)
6/9/94 500 mg Biaxin, 64 tabs (antibiotic)
6/22/94 500 mg Biaxin, 14 tabs (antibiotic)
6/22/94 80 mg Bactrim, 1x day, 14 tabs (antibiotic)
6/22/94 50 mg Cataflam, 3x day, 25 tabs (anti-imflammatory)
9/15/94 400/80m Bactrim/Sidmak, 21 tabs (antibiotic)
9/30/94 400/80m Bactrim/SMZ-tmp, 21 tabs (antibiotic)

Whenever any strange pains appear the first thing that comes to my mind is where can I get some antibiotics to treat myself.
I was thinking today that if I ever felt I was really having a reoccurance of Lyme I would have to switch primary care physicians as mine only knows how to go by the book and not treat clinically.

I had an embedded deer tick 2 years ago on my back and developed a bulls eye rash at the bite site so I convinced my current doc to give me a longer dose of antibiotics. I ended up adjusting it myself though so that I was taking 400 mg Doxycycline per day for 1 month. (Dr. Burasscano recommends 400-600 which I showed to my doc but he said that's not what his book said so he did compromise a little). I did not develop any Lyme symptoms are that month of 400 mg Doxy.

I found the slip from the Eye Doc from 4/19/93. He notes that I "presented with a history of aching of the eyes. There is a history of possible Fibromyalagia according to the patient". He notes that my examiniation was normal, "with no evidence of eye involvement in this lady."
This is where going to a LYme support group comes in, because the reason I even thought it was related to Lyme was because some others in my group at the time were also having eye pain. I definitely believe it was a manifestation of Lyme. I believe I had some "floaters" at the time too but I don't have it written down. The other thing is that the eye pain went away with all the other symptoms after having enough antibiotics to knock the Lyme out.

Whenever any strange pains appear the first thing that comes to my mind is where can I get some antibiotics to treat myself.
I was thinking today that if I ever felt I was really having a reoccurance of Lyme I would have to switch primary care physicians as mine only knows how to go by the book and not treat clinically.

I had an embedded deer tick 2 years ago on my back and developed a bulls eye rash at the bite site so I convinced my current doc to give me a longer dose of antibiotics. I ended up adjusting it myself though so that I was taking 400 mg Doxycycline per day for 1 month. (Dr. Burasscano recommends 400-600 which I showed to my doc but he said that's not what his book said so he did compromise a little). I did not develop any Lyme symptoms are that month of 400 mg Doxy.

I found the slip from the Eye Doc from 4/19/93. He notes that I "presented with a history of aching of the eyes. There is a history of possible Fibromyalagia according to the patient". He notes that my examiniation was normal, "with no evidence of eye involvement in this lady."
This is where going to a LYme support group comes in, because the reason I even thought it was related to Lyme was because some others in my group at the time were also having eye pain. I definitely believe it was a manifestation of Lyme. I believe I had some "floaters" at the time too but I don't have it written down. The other thing is that the eye pain went away with all the other symptoms after having enough antibiotics to knock the Lyme out.