Lyme Disease Support Group

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.

edited; removed italysis; easier to read w/out it. bettyg, group leader

Post edited by: Bettyg, at: 06/26/2010 10:10 PM

(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.

It hit me with Bell's Pallsy, extreme Fatigue, horrible muscle and joint pain, brain fog, and confusion.

As everybody else I was misdiagnosed for some time. As I began to understand that M.D.’s don’t have all the answers, I began to look elsewhere.

I took a new approach, I began studying and trying things that helped REAL people feel better.

I am quite certain than many reading this post know exactly what I’m talking about – instead of listening to doctors, you start desperately searching for something to take the edge of, to give you your life back.

You interview other Lyme patients and ask what has worked.

I encountered various herbs, alternative treatments, acupuncture, homeopathy, essential oils, conventional antibiotics, you name it.

All these are wonderful treatments; all hold their place in the big picture of health.

However – in my case, while some of these helped, the help was insignificant and very discouraging. I kept asking myself, “how is this treatment going to get the spirochetes out?”

I was lucky enough to get ASD through my parents from Eastern Europe. This natural bioactive compound cured millions of peole in Russia and other parts of the world.

It's been 3 month since I am taking ASD. I still have Lyme, but I am 99% symptom free!

I am blessed to be pain-free, get rid of brain fog and fatigue! I have faith my body will cure from Lyme very soon!

edited; broke it up for severe neuros to read like me. bettyg, group leader

Post edited by: Bettyg, at: 06/26/2010 10:13 PM

~~~Please prove me wrong.

If soemthing cured you, or at least brought u to a symptom free place ( of which i am sincerely pleased for u) kindly provide more details as the acronym ASD means little to me and i cant find anyting on the net

stay well and many thanks

Kittie

:o)

Kittie