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Lyme Community Lyme Disease Support Forums General & Support Lyme success story---- just the first of many
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11/16/2008 08:15
cave76

Here is just one of the MANY success stories about 'beating' Lyme to balance the articles that (correctly) state bald facts about the difficulty of 'beating' Lyme.

Rejoice----- and I'll post more.

My [name not posted here] success can be attributed to:

1 yr of doxycycline / Flagyl

3 months of IV rocephin

3 years of Bicillin shots

99% of all of my symptoms cleared up, except numbness in the face and insomnia, but I now lead a normal life and have had no relapses [Smile] .

A little background:

I was sick for six months and had many hospital visits before I was diagnosed, so I had serious neurological problems including insomnia, memory loss, facial numbness, vertigo, etc. including an inflamed heart and many other issues.

I was 22 years old when I was bitten and their was no rash. My roommate did get bitten as well and he did have a rash, that is the ONLY reason I new to ask for a lyme test. I was lucky, because there was no rash or visible tick.

I first went to a general practitioner that put me on low dose doxycycline after I tested positive for lyme two times. He stopped treating me and said he didn't know why the doxy wasn't working.

I then took it upon myself to find a lyme specialist who put me on high dose doxy, penecillin, and flagyl.

That helped a little bit, but wasn't a cure. I then looked for a doctor that would prescribe IV antibiotics and thankfully found an infectious disease specialist that did prescribe them for me.

Because I tested positive so many times I had no problem getting the IV antibiotics. That helped a little bit as well, and finally I went to a lyme specialist who is a neurologist and they put me on bicillin shots twice a week.

Over a 3 year period this helped the most, but it was a very long road. My suggestion: excercise when you can and stay positive even though it is hard.

[cave note: remember, not everyone will get better by following that protocol. I've yet to see any two that are the same----- but most share one commonality----- long term and aggressive antibiotics. And the knowledge and the will to 'stick it out'.]

More coming down the pike.

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11/17/2008 07:50
cave76

Another success story:

(Name left out)

I think it's time to add my story to this thread.

I've actually had to cobble together my Lyme history, based on journal entries. I had symptoms dating back to the early 1990s. Then in 1996, I had a tick bite and rash. At that time, I was treated with abx for about 18 days.

The rash went away, and I figured I was fine.

Over the next few years, I had a variety of weird symptoms, which sent me from one medical specialist to another--about 16 in all. Each one seemed convinced of what was wrong with me, with dx ranging from endometrial cancer to tendonitis to hypothyroidism. I spent a lot of money on treatments they suggested, and my health continued to worsen.

By 2002, I was exhausted all the time and only working part time. My memory was slipping, it was difficult for me to concentrate or think. I was walking with a limp and still going from doctor to doctor. I was also beating up on myself a lot, because I didn't know what was going on...so I kept trying to push myself.

Finally, in 2005, an acupucturist I was seeing suggested Lyme Disease as a strong possibility.

I went online, found this site and started reading about all the controversy surrounding the disease.

I spent a long long time trying to figure out which LLMD to see and finally decided on someone out of state. I think that's one of the best decisions I made.

I started antibiotic treatment for Lyme and Bart in June, 2005.

Initially, I got much much worse and had new, scary symptoms which included seizures, full body paralysis (which lasted more than 3 hours), chills that nothing could slake, even worse exhaustion and a slew of bizarre cognitive problems. I literally found it impossible to remember anything from one minute to the next.

I held on to a thread of work, just to stay busy, and I refused to go to bed for more than a day here and there. I kept holding out hope that I would beat this. I prayed a lot and struggled against awful depression.

I augmented my antibiotic treatment with herbs, supplements and some alternative things. I was fortunate enough to have weekly acupuncture, which I think helped me a LOT, as did Chinese herbs my acupuncturist gave me. But I never stopped taking antibiotics.

It took about 9 months before I noticed discernible improvement. At that point, my LLMD started me on tindimax, to address the cystic form of the disease. It was a rough antibiotic, but I began to notice even more improvement.

After being in treatment for about 14 months, I was able to walk more than a few blocks. I pushed myself to walk until I was up to a mile. Sometimes, though, my foot would just go numb or I'd develop searing pain in my hip. Those had been very early symptoms, and I never knew when they would happen again.

Around 14 months, I was hired to do some consulting work for a national company. After a few contract months, they asked me to come on full time. I talked with my LLMD, my acupuncturist, my SO (who's been a rock through all this hell). The health insurance alone made the whole thing too tempting to refuse. Prior to this, I'd been paying BCBS out of pocket, which was a fortune!

I started working in January, 2007 and have been there ever since. Although I told my bosses about my condition prior to them hiring me, I doubt my co-workers have any idea I've been sick.

I'm still on abx but am weaning them down. I now walk regularly--one to two miles at a time three or four days a week-- and only occasionally have the numbness return. My thinking has vastly improved, the stuttering I had is gone. I no longer have the sensory distortion I did. My social life is back.

This past summer, we vacationed in Canada, and I drove the whole 9 hours to get there with no problems.

I have a good friend who's a nurse and saw me at my very worst. She told me just recently that she never imagined i would ever survive this. I was drooling and seizing and shaking with chills.

I'm definitely not there anymore.

I feel incredibly grateful to have so much of my life back, and I hope anyone who reads this feels the hope it holds.

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