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 Post subject: Todd's Story
PostPosted: Mon Feb 18, 2008 11:06 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
It was the weekend of July 4, 2006; my mother had just died of colon cancer, and I had gone away for a weekend to a mountainous area in the southeastern U.S. Shortly after returning I began feeling extremely anxious and having heart palpitations. Now, I was no stranger to anxiety, but this was random and uncontrollable. I knew something was unusual, so I went to my well-intentioned primary care physician who diagnosed me with "grief."

I spent half of August 2006 on Cape Cod, which I later learned is a tick haven. I returned with a severe cold that seemed to resolve very slowly. When it finally did, I was left with feelings of pressure in my face, particularly on the left side. My eye ached; my vision was blurry; I was foggy-headed; and for about one month I was constipated.

In September I reported to an ENT who tried a nasal steroid to no avail. He then ordered a CT scan of my sinuses, which revealed nothing. By this time I was feeling fatigued and was certain I had a sinus infection. I remember telling him that these symptoms were starting to infringe on my quality of life. He, in return, asked me to go home and wait another month for the symptoms to abate. He said we could consider sinus surgery, despite seeing nothing particularly abnormal in the CT scan.

The next ENT I saw said the discomfort and pressure I was experiencing sounded like a neurological problem. This was early October, and I had begun taking Avelox, an antibiotic prescribed by the first ENT, just in case there was an infection. Two days into the medication I began feeling awful. I was weak, dizzy, somewhat nauseated---altogether sickly. I had to stop taking the antibiotic after day four. This ENT threw out the possibility of a brain tumor but said that was unlikely. Terrified and weak, I reported to the emergency room the weekend after my visit with the second ENT. I complained of fatigue; pressure in my head and ears; pain in my left ear; pressure and pain on the left side of my face; and constipation. The ER physician started asking me if I'd noticed a rash, hair loss, etc. I said "no" to all those questions. I later learned that he suspected Lyme Disease, so I began researching Lyme Disease, and it matched my symptoms perfectly. Then I remembered the awful rashes! How could I have forgotten the two bright red rashes I saw on my pelvis upon returning from the mountain trip in July? The picture was starting to develop.

I did report to my primary care physician, who ordered an ELISA, the preliminary test for Lyme, and it was equivocally positive. The confirmatory Western Blot rest revealed two positive bands. (One more positive band in one category would have declared me positive by CDC standards). My PCP declared the test "negative" but suggested I see either an ID physician or a neurologist. She said a spinal tap was inevitable. Several ID physicians refused to see me; some of them were friends of friends. Nonetheless, they said they wouldn't see someone who didn't "have a diagnosis" and that I did not have Lyme Disease because I did not show any abnormalities in my MRI, and I was not suffering from arthritis-like symptoms. My primary care physician said it would be "unethical" for her to treat me without a firm diagnosis. I was frustrated and scared.

I learned of an ID physician in the eastern part of the state who treated Lyme "aggressively." A patient of his was advertising a support group for Lyme patients online, which is how I learned of this doctor. I visited him in November and was given an prescription for Doxycyclne immediately. I knew from reading the Burrascano guidelines that 200 mg of Doxycycline per day was insufficient, but I was happy to have something. And boy did I feel awful for the first few days I took the medication. I happened to be traveling the day after I started the antibiotic, and I was so ill at times that I wondered if I could get home (painful neck, extreme fatigue, breathlessness, intra-cranial pressure, etc.). It was pretty bad.

I soon scheduled an appointment with Dr. Jemsek in Huntersville, NC. He was confident I had Lyme, but it would be some time before he could begin treating me due to the restrictions that had been placed on him by the NC Medical Board just a few months prior. So, I waited and waited; got the NC Medical Board mandated second opinion from an "approved" ID physician; and in mid-December I began the Jemsek pulse regimen (Minocycline, Biaxin, and Flagyl (every third week). All the while I had been taking the Doxycycline prescribed by the aforementioned ID physician.

I noticed a significant improvement two weeks after starting the original antibiotic in November 2006. Today I continue to work with Dr. Jemsek, though he can only write prescriptions for two months of treatment, which we have been able to extend by pulsing the treatment (taking medication three days per week and every fourth week off). I generally feel good today. I still feel pressure in my scalp and am occasionally foggy-headed. But largely, I am able to function normally.

What will I do when Dr. Jemsek can no longer treat me due to the Medical Board's sanctions? I have no idea. I'm just trying to live day-by-day now and bask in the improvements I've experienced since this episode of "grief" began.

Todd

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