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.

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. My third doc said to take Aleve instead of Motrin and to exercise.

I wrote in my notes that between seeing third doc 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.

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.

Sometime during these years (I didn't try to find a receipt to track down date) I went to any eye doctor because my eyes ached. There was no medical reason that the eye doctor could find. I attribute this to the Lyme.

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!

See next post for list of meds I was on.

I wish all of you success in treatment of your Lyme. Joan

What really catches my eye, about all of the meds you took was that your doc really seemed to mix it up and pretty often. I think that might be a real good idea.

I have a hunch that using just one or two ABX for months on end might only serve one purpose. That is to send the little creeps into hiding until the smoke clears. While they are dormant, ABX are useless. So you might feel better for a while because they are dormant, but stop the ABX and out they come.

I found this little blurb in an article just this morning. "The doctor may have to adjust the treatment regimen or change medications based on the patient's response. Treatment can be difficult because Bb comes in several strains (some may react to different antibiotics than others) and may even have the ability to switch forms during the course of infection. Also, Bb can shut itself up in cell niches, allowing it to hide from antibiotics. Finally, antibiotics can kill Bb only while it is active rather than dormant."

We want them to go dormant, but we need to reduce their numbers enough before we put them to bed.

6/11/95 ``still having some pains in rt ear, rt jaw, rt foot, left side of back''

Ten years later:

8/19/05 ``now fine''...

Are you saying that you got well slowly once you completed/stopped the abx.?

10 years no reoccurrence...wonderful!

One of these days I'll use that rx to get new glasses...

It's the # of free radicals that cause the eye problems. Increases TNF alpha.

Usually, causes uveitis (inflammation of a nerve), but can impact the retina.

Keep the antioxidants up!

Get your mits on the supps. that "protect" the eye. "All in one" bottles. Look for leutin, zeaxanthin..., vitamin E.

Lemon grass helps too and selenium.

Eat eggs...easy over 3x/week. Easy over to protect the nutrients (minerals) in the yolk which heating destroys.

At one point in her lyme journey...sis could only see the big "E" on the chart.

She has some permanent damage, but it was caught in time. She had to resort to steroid shots IN HER EYES to save her sight. Since steroids got her into this mess in the first place (misdx'd and given steroids)...you can imagine her anguish.

Protect your eyes from damage! The pain is a WARNING.

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. B 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 am intrigued by your reference to eye pain, with no obvious cause. I recently saw an ophthalmologist for eye pain, for which he also found no cause. He said he didn't think Lyme was causing any damage to my eyes, which is good, but, like you did, I attribute the pain to Lyme. Or deteriorating vision causing eye strain."

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.

Could you do a favor for all of us chronic lymies, EDIT yours (see the pencil) and break up your LONG paragraphs into 6-8 lines of text and DOUBLE SPACE between paragraphs?

We can NOT comprehend that much with no breaks of text and no double spacing...ok.

Also, there is a new rule by the webmaster that NO drs. last name be shown...only their last name initial. Please edit where you have shown 2 drs. names.

Again, thanks for taking all the time it took to type this to give us HOPE to be free of lyme in years to come!!

Were you in treatment for 4 years in total?

quote:

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Originally posted by bettyg:
Jo, thanks for sharing your success story with us all!

Could you do a favor for all of us chronic lymies, EDIT yours (see the pencil) and break up your LONG paragraphs into 6-8 lines of text and DOUBLE SPACE between paragraphs?

We can NOT comprehend that much with no breaks of text and no double spacing...ok.

Also, there is a new rule by the webmaster that NO drs. last name be shown...only their last name initial. Please edit where you have shown 2 drs. names.

Again, thanks for taking all the time it took to type this to give us HOPE to be free of lyme in years to come!!

bettyg, Iowa

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Thanks for letting me know the posting ropes with double spacing, etc Bettyg. How do I edit to take out the names? I only see one doc name. I'll look again for the other.

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)

quote:

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Originally posted by joprit:
Since most of you are still in pain, and struggling with diagnosis and treatment, I thought I would tell you that I had Lyme and had the same struggles (though not the insurance ones) and I am now fine. My sister encouraged me to write because so many people only hear about the people who have never gotten better.I am sooo happy for you, could you share with me what doc finally got you well? you can email me @ [email protected] thankyou, and Be Well, Jan

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.

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. My third doc said to take Aleve instead of Motrin and to exercise.

I wrote in my notes that between seeing third doc 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.

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.

Sometime during these years (I didn't try to find a receipt to track down date) I went to any eye doctor because my eyes ached. There was no medical reason that the eye doctor could find. I attribute this to the Lyme.

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!

See next post for list of meds I was on.

I wish all of you success in treatment of your Lyme. Joan

[This message has been edited by joprit (edited 21 August 2005).]

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