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 Post subject: Mark's Story
PostPosted: Mon Feb 18, 2008 10:55 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
(Marks story is taken directly from a post at a Lyme support forum when he was in search for help)

A doctor I visited recently has just diagnosed me with Lyme Disease. He says that I have 3 "bands" of the 5 needed for most doctors or insurance companies to believe I have Lyme. Apparently they test for 10 strands and you must test positive for 5 out of the 10, or something like that. For them to consider it a definite case of Lyme. He claims he is fully confident that I have Lyme(because I have the most telling band), but I've been through soo much for so long that it's hard to trust anybody. Why wouldn't the CDC recognize it as a disease? What would they have to lose? I'm just scared of being sold snake oil and a bill of junk. Trust me, I want so badly to have Lyme disease or any disease for that matter. Anything to tackle, instead of wallowing in this generic severe chronic pain, that is only a little less desirable than death. Give me something to fight against and I'll do it. I'm only 26 and feel like I'll fight with all I have, I just need to know what I'm supposed to battle. But I just don't know what to think?? I'm gonna go to my primary doctor and pick his brain, he's very young and seems open minded. So I feel I can trust him, but... Who knows. Maybe he knows a little about alot of things, while d my integrative medicine doctor really does know alot more about Lyme and other chronic illnesses. He's gonna put me on antibiotics and it's apparently going to make me really sick, but I'm fine with that(if it's for a reason). What do I have to lose? And what can I expect the side affects of the antibiotics to be? How will I know if I really have it and when can I tell people that I have Lyme Disease(as I don't want to claim I have something, that even I am suspiscious of). Here's my LONG history(it's exactly what I give to doctors now), does this sound like any case of Lyme you've heard of before?? I really want to believe, but the undefinitive-definitive tests really have me scratching my head.

And if I do have it and have had it for at least 8 years? What are my chances of living a normal life again and will my parents go broke in the process?

Thanks for any advice/words of wisdom/or just for reading my rant... I'm tired of suffering a terrible pain, been tired of it for years... I don't know how often people frequent this board, but I'll post this and check back occasionally. As I know it's alot to read and it could be a while before someone gets back to me...

Thanks so much to anyone who takes the time to read this(or at least some of it)... Here's my sad biography, I've erased doctors names and offices and inserted some question marks.... I've never done this Dr Abby type thing before, but I'm desperate...

Chronic Pain History

1998 - 2006

1998 -2000

· Deep and sharp pain surfaced in a nickel-sized area just to the right of spine.

· Pain began at the end of wrestling season of 1998(April). Located on level with the


· Shoulders (left and right) frequently subluxed during senior year of wrestling. The pain was very severe when the shoulder would pop out. But I would ice the shoulder and get back to working out/wrestling. The right shoulder subluxed more frequently, but the left subluxed as well. The right shoulder popped out at least 30 times over the span of a season

· I had no change in activity for at least a year or two after the pain began. The pain was there, but it didn't outwardly affect me. School, social life, work, etc. Though the pain lingered and never left. I put on a front to most people. I did see chiropractors, a several doctors and did some "physical rehabilitation". However, the rehab was more fit for an 80 year old than or an 18/19 year old who could run 5 miles and could easily do 100s of pushups.

· The whirlwind of doctors continued and the pain rapidly worsened. From this point on the pain has never gone away (with the exception of a few hours now and again starting in the year 2005). The only diagnosis ever given was "myofascial pain".


* I went to a doctor in Orlando, Fl.
* He eventually treated me for Hypothyroidism, Hypogonadism, Hypoadrealism and several chemical deficiencies (Iodine, Selenium, Zinc).
* Prescribed Synthroid (hypothyroid), Klonopin 1.5 mg a day (at bedtime),
* Baclofen 20 mg (at bedtime), Zanaflex (1xday at bedtime), Flurbiprofen 100mg
* Prescribed an Home H-Wave machine, which I still use.
* Would travel to see him every other week (13hr round trip). This began with over-night trips, but for that last year was there and back in one day. He always thought he could "fix" me, but I am not sure that he really understood what I was experiencing. It took me a while to realize that.


* I visit/visited chiropractors, massage therapists, physical rehab, and acupuncturists at least twice a week. I usually had appointments at least 4 to 5 times a week. This led to minimal pain reduction. It took a fraction off of the severity of the pain, but not much more. It just kept me alive, at best.
* Severe permanent muscle spasms stayed on the entire right side of my spine. A mound was visible to the eye along my spinal cord. Nothing could be done to reduce the swelling or pain. I was bedridden, except when I forced myself to go somewhere. Mind over matter would occasionally get me out with friends for dinner. BUT, it was hell and was always strictly mind over matter.
* After graduating from college, I stopped taking Klonopin, Baclofen, and Zanaflex. I actually quit these medications at one time ("cold turkey") a few days before my graduation, at the direction of the latest doctor I was seeing . This caused me to go through tremendous withdrawal and I did not sleep at all for two - three days. Once I had gotten through the withdrawal, the haze in my mind disappeared (the drugs numbed some of my mind which helped me to graduate), but the pain and depression only worsened once I quit taking the drugs (though I didn't think that was possible). From the year 2003 (when I graduated) until 2005 (post Botox injections), I basically didn't leave the bed, except to drive to my various appointments. I never slept through the night. I would take Prosom and Benadryl, "fall asleep" at around 1AM. I would wake at 2AM, 3AM, 4:30 AM, 6:00 AM 7:00 AM, etc. Upon waking, I would be forced to do my back on my home H-wave every single time. This also only lessened the pain from torture to less torturous.

I would do the H-wave machine for at least 20 minutes every time. And go back to "sleep" for another hour or two. It was clearly never really sleep and not a way to live. I stayed awake throughout the day, until late in the night. Where the cycle, which was my own personal "Groundhog Day" of pain, would continue. I would do the H-Wave pretty much every hour all day long.

* Nov. 2003 - Had shoulder surgery (bankart repair) on the right shoulder. It had been noticed by the doctor at ?(my second visit there) with their x-ray that this was needed. I was then referred to Dr. ?. Note that this was after a Columbia, SC shoulder specialist (?) had seen me and said, based on two or three visits and one x-ray, that I had no problems with my shoulder and that he was not a "back" specialist.


* Began receiving Botox injections (? gave me 4 botox injections spread over a year. The last two injections consisted of the highest dosage that could be administered without it being harmful to the body). ? also gave me paraspinal muscle injections every two weeks for a long period of time. It helped to lessen the muscle spasms and reduced the pain from torture to a little less torture. The swelling and mound beside my spinal cord did decrease and I started to sleep a bit more. I finally started to usually sleep through the night. I would sleep 4 hours and sometimes as much as 7. This was a huge improvement. As swelling and pain decreased on the right side of my back and along my ribs, the pain actually spread to the left side of my back. I assume the pain was always there, I just couldn't feel it because of the severe pain on the right side.
* ? had an MRI done on the left shoulder (4/06/05). Reading: abnormal appearance of the anterior and posterior glenoid labrum suggesting severe degeneration or tear and Presumed labral cyst posterior to glenoid labrum. Surgery may be recommended, but I chose to not do for now. I was afraid it could set me back again. ? said that could be okay, as my left arm/hand is not me dominant one. We will just have to see.

Present Day 2007

* The pain is now worse in both scapulas/lats areas, but I take this as a good thing. However, the pain is still severe and debilitating. The paraspinal pain, which is where the pain was the most intense for years, is very light. I see ? for message therapy(1x a week) and ?(2x a week) for Active Release Technique. I occasionally still see the accupuncturist. The pain is much better than it was from 2003-2006, but it's not where it needs to be for me to work and lead a normal life.

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