Dianna's Story
I became ill in 1989, while living in Columbus, Ohio. I was then 33 years old and had two very small children. Things were complicated by the fact that I tested positive for giardia infection when I had a very intense, flu-like illness, after which my neck became very stiff and painful upon bending forward.
In addition, my hands and elbows started feeling arthritic, like an elderly person's; I had ulcers on the inside of my mouth, and a huge rash spreading from the left side of my face, across my neck, and later into the top of my chest. I have pictures of this. My sed rate at this time in the process was elevated.
It was an older friend who hailed from Wisconsin who provided me with information on Lyme disease. Amongst the info she provided me was an article written by a rheumatologist in Wisconsin, in which he mentioned that a lot of his Lyme patients remembered an insect bite with a "clear liquid vesticule" on it. Upon reading this, I awakened my husband at 3am and made him read it as well. In as much as a couple of months prior, I had shown him just such a bite, with a kind of blister, much like a chicken pox blister, on top of it, on the inside of my left wrist.
Typical of me, I had then picked this thing open and watched the clear liquid run down my arm! At this point, I requested a Lyme titer from a local doctor, who laughed at me but sent it in. This first one came back equivocal, and it was done after I had taken a few weeks of doxycycline for mouth ulcers. I continued to worsen over the following months, with my eyes becoming sensitive to any light, especially when driving at night--couldn't look at oncoming traffic without shielding eyes and all light posts had rings around them, etc.
I had some weird, "floater" type experiences with eyes, and a myriad of other things (on and off fevers, sweats, flushing of that rash), but lots and lots of migrating pain, and I will never forget the neck. A couple of months into it, a rheumatologist from a major University called me to tell me that my second Lyme titer was positive, but that I should "ignore it and get on with my life, as it was probably false."
The only other test which came up was something which, as I remember, was called a CREAG. And a doctor told me I had a genetic predisposition for reactive arthritis.
Many, many doctors (from top places) and lots of rhetoric later, I made it to an ID doctor who believed that animals weren't a stagnant thing. She admitted me and treated me with 9 weeks of IV Rocephin, followed by several weeks of oral penicillin.
I had a knee swell up so badly in the hospital after the first couple of doses that they had to wrap it and give me Demural, and she said that was a good sign ,and to hang in there. Treatment was initiated in November of 1989, and by June of the following year, I would say I was 90% improved, without any further problems for 7 years; at least that I was aware of. I only saw doctors for a yearly pap smear and an occasional bout of strep or sinus problems.
Then, in 1997, odd things started happening again. It began with an almost-ruptured left tibial tendon on the top of my ankle, running along my shin and into my big toe. It had to be casted, as it was so swollen and sensitive that I was dragging my foot, unable to lift it. I never thought of Lyme disease when this happened, as this had no relation to the types of problems I had experienced with it before.
However, a couple of months went by, in the cast, and rather than improve, the tendon became even more sensitive with shooting pains much like an EMG, and I started experiencing a lot of popping and cracking of bones in both feet; an unusual amount. The other foot was also threatening the same types of problems, and it would alternate feet, so that I wouldn't know which one to put the cast on! I began having a lot of muscle twitching and "jumping" all over my body, especially in my face and eyes.
I would be talking to someone and all of a sudden my eyelid or the top of my cheek would start bouncing around visibly. Also, a mild carpal tunnel in both hands went from not much of a problem to off the wall, with the tendons in the thumb muscles so tight that I could not press on them without pain. Also, the ulnar nerves (I didn't realize this was separate until the neurologist told me) did the same thing, painful and pinky and ring fingers falling asleep all night and when I hold something up, like a phone.
I had the left hand carpal tunnel problem surgically repaired, and the surgeon refused to look at the right hand afterward, since the left was not responding to the surgery the way that it should. Another thing which I noted was that two bone scans were done (actually checking for Reflex Sympathetic Dystrophy), about 6 or 8 months apart, and the first one showed no arthritis, while the second one mentions arthritis in the left foot; which is where the problem first began.
At some point here, I decided to look into the Lyme again. I requested a series of 3 LUAT- Lyme urine antigen tests from Igenex, plus the Western blot. The three urine antigen tests came back with one low and two extremely high numbers (they were 24, 47, and 91, for those interested). The Western blots came back negative on IGG, but positive on IGM, in the bands of 31kda, 34kda (medium, two positives on this one), 41 kda, 58, 73, and 93 kda. Tests sent to SUNY labs came back equivocal, and the ones sent to labs here came back negative.
Docs here in Illinois kept telling me that these had to be "false positives" from Igenex. I finally responded with "But what if they are not?"
Hence, another six week round of IV Rocephin was initiated, with much reluctance. I also followed through with a rheumatologist recommended by LDF who is up in Wisconsin(the only one they recommended in Illinois last year was on leave of absence). The ironic thing is that this rheumatologist is the same one who had written the article about the bite with the clear liquid vesticule ten years earlier!!!
He took a thorough history -- didn't either discount or absolutely confirm Lyme, but recommended continuing treatment anyway. All symptoms were not gone after the six weeks (arms were still a problem, especially), but he told my internist to give me a month of oral penicillin afterward. I seemed to keep improving, as though stepping down a ladder, over time, and began exercising and living again.
Around the holidays, I began to have an odd pain at the insertion point of the peroneal tendon running along the outside of the right foot. I was sort of leary about another odd tendinitis coming on, but ignored it and made arrangements to have my right hand fixed. The ulnar nerves still weren't testing out on EMGs, despite constant numbness problems with them (the right one did show up once, but then not again a for year or so later).
By the time the hand surgery rolled around, this peroneal tendon was so bad that it was awakening me at night; swollen and red and pressing on the nerve in the outside of my foot. I had to get out of bed 3 nights in a row in tears and elevate and ice it. Then I went to my internist, who sent me to a foot specialist. Celebrex at least keeps it from swelling so badly that I wake up with it, but physical therapy does not help it. Then, in April, the left tibial tendon gets all inflamed again, and starts getting those shooting, EMG-type pains. It is at the base of the big toe for the most part this time, rather than at the ankle.
In a hot bath, both tendons (right peroneal, left tibial) become inflamed, painful and red. By June, I am having terrible sciatic pain on the right side (history of back surgery on left side) and in agony and fairly crippled. I am also riddled with the odd "jumping" and twitching moving around in my body. The Neurologist tells me it's Fibromyalgia and leaves it at that. I go back to the guy in Wisconsin, who runs a bunch more tests, including Lyme tests sent off to SUNY again.
I start to have occasional bad pain in my right shoulder blade, and alternating hands, etc. These problems seem to move and change hourly, so I sound kind of crazy even trying to describe it, but it's bad. He calls me last Friday and tells me that this time, tests from SUNY have come back positive according to even CDC definition, and he thinks I should be retreated. the Internist here at home hears this and tells me he isn't convinced (because sed rate wasn't elevated), and is indignant that I am calling him, but at least he has committed to working with the guy in Wisconsin.
I tell him that I am down to functioning at about a 20% level, am in agony at times throughout the day, and need him to consult with the Wisconsin doc.
I am now on IV Rocephin again (as of yesterday, June 24th), and terrified. Terrified that it won't work, terrified that it may be some reactive thing that is progressing and won't turn off, terrified that I am somehow in a later phase of disease. I am normally a fun and active person with lots of long time friends, but it is hard not to close up and retreat into a shell with this illness; especially when there is no support from the people who are supposed to be helping me!
Yesterday, I could not walk at all on my right foot for several hours early in the day, because the outside of the foot was so painful. The sciatic pain was also bad (MRI shows no disk problem).
This is why I need a support group. I feel as though I am a sane person who is being treated like a deranged one, except for the guy in Wisconsin. I find it inconceivable that you can tell people that you are in this much pain and they really just blow you off!
I also find it astounding that attitudes about Lyme haven't changed too much since 1989; even as Burgdorfer is finding evidence of mosquitos transmitting this thing. My poor husband is in the process of starting a new job after being laid off in the BP/Amoco "friendly" merger, and it is unfair to constantly burden him with further worry on this.
If you made it this far, thanks for listening. I am not sure what I expect, besides a little handholding and possibly advice.
Fourth week of Rocephin note: Pain in sacroliliac joint on right side is almost unbearable, and I am worried that it is not responding to the antibiotics. It is sending pain through my gluts and all the way down into my feet. I can not sit for any amount of time. Trying to hang in there, but it sure is hard to cope with this.
Dianna
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