Yea !!!! I am a Lyme Disease "Success Story". I've been off of all meds prescribed for Lyme for 7 months now! I consider myself to be 90%-95% 'well'. Every now and then I get a slight reminder when a symptom will come back SLIGHTLY, but it's nothing that puts me 'down'.
I'm working and living my life again!!
THERE IS HOPE!!! DON'T GIVE UP!!!!
Posted by savebabe (Member # 9847) on :
I love hearing success stories!!!! I hope you continue to get better and better. Posted by lucy96734 (Member # 8372) on :
It is good to hear from people who are getting on with their lives.
How did you and your LLMD decide to stop treatment? Were you 90-95% before you stopped?
I am at 90%, really 99% nearly all the time with 2-4 days a month where I am hit back to 50%.
I am happy for you!
Lucy
Posted by Coyotecrazy (Member # 6707) on :
I am so happy to hear of others who have had good success with treatment. My LLMD and I decided to take me off of meds when my primary/most troubling/most persistent symptom was 90%-95% better.
I DO still take Allegra, Singulair and Guafenasin (sp?) for problems with my ears, but I've had "ear" problems all of my life -- the Lyme just made it much worse.
BEST OF EVERYTHING to all of you.
I do know several people from Alabama who have gone to Kansas City for treatment and say that it is helping. It takes a good deal of money, a good insurance company, and time away from home/job to be able to take that treatment, so that wasn't an option for me.
It may be worth a try for others who are able to do it.
I had great results with standard LLMD treatment and I smile a lot more now. Posted by Soleilpie (Member # 8481) on :
Congrats Coyotecrazy!
How long were treated? One of your old posts said that you were newly diagnosed in January 2005. So, maybe 2 years of treatment? If so, that's pretty dang good! Posted by Coyotecrazy (Member # 6707) on :
If my old post said that I was just starting treatment in 2005, then that's correct! I'm terrible with dates ......... and the older I get, the faster the time flies!!!!
I may have said earlier that I was treated for 3 years (????) - it seemed like forever, but I am sure that an old post would be more accurate than my memory
Yes, I was very LUCKY to be correctly diagnosed and properly treated so quickly - that may be the primary reason that I'm almost completely well.
Best to You!
Posted by hopingandpraying (Member # 9256) on :
Congrats Coyotecrazy!
I would like to know what your treatment was, what worked, what didn't and what other things are you using now (other than the meds you mentioned in your post).
Glad to hear about your success. May it stay that way forever! God bless you.
Posted by Aniek (Member # 5374) on :
Yippee!!!! Thank you so much for sharing. It's important to remember that people do get better.
Posted by sonwithlyme (Member # 10942) on :
Thank you so much for sharing your story. I just showed your post to my 11 year old who was diagnosed in 2005 and has been on antibiotics since. I said "see, there is hope". Dustin has had a very rough 2 years, he has been out of school, getting tutored at home since he got sick and some days are pretty tough. So thank you once again for renewing our "hope". We wish you continued good health. www.caringbridge.org/visit/dustineckert Posted by CaliforniaLyme (Member # 7136) on :
Yay*)!*)! Good to hear!!!
Posted by Boomerang (Member # 7979) on :
Congrats coyote!! Exciting news..
I'd love to hear what your treatment was also. What worked the best for you?
Posted by lymeHerx001 (Member # 6215) on :
May I ask how long you were sick for?
Posted by Coyotecrazy (Member # 6707) on :
I started treatment with oral antibiotics in November, 2004. I started with Augmentin and Zithromax. NaDa there.
After a month, I started on 300 mg doxycycline and zithromax. No doubt the doxy was what was helping some because I "cheated" and stopped taking the Zith and I still got better.
Over the course of several months, I gradually went up on the doxy until I was taking 800 mg. At 800 mg, however, my skin started 'crawling', I was gettin a sunburn through the car windshield and my stomach said "enough" - so I went back down to 700 mg oral doxy and stayed there until I hit a 'plateau' in about January, 2006. I was still having problems with dizziness, confusion, and being tired, just not as bad as before the orals.
At the end of March, 2006, I got a Groshong catheter put in and started on IV Rocephin. That helped a lot more but I still didn't feel 'well'. I was still taking 400 mg of doxy and Ketek was added.
I think I got 'lucky' in that I got a massive infection in my left parotid gland - along with 3 deep abscesses (after 6 months of continuous IV Rocephin), so I was hospitalized and went through surgery for that. Since I had been on IV Rocephin when the monster infection began, the docs were freaking and they put me on IV Vancomycin and oral Septra, twice a day, for a month and ka-blam - I began to get well'!!!!!!
Actually, the getting well continued gradually from the time I got on the Vancomycin, until I had been off of it and the Septra for about 3 months. It was just this past April that I really started feeling like myself again.
Every now and then I'll feel slightly dizzy - but that happens ONLY when I've "over-done-it" and get really tired and/or don't get enough sleep for a couple of days.
I really think that getting rest is a big factor and so is continuing to do something, anything, physical a couple of times a day so that your muscles don't just atrophy too. I went to work MOST days - sometimes I'd have to leave early or miss a day - and I would FORCE myself to go out and brush our horses or shovel manure - if even for just 30 to 45 minutes - because I was afraid that I would just 'give up' if I didn't continue to force myself to be active.
I also had a fabulous psychiatrist that I could see when I got really down about things.
What didn't work ............Augmentin, minocycline, Zithromax, tindamax, vitamins, relaxation therapy, massages, carrot/celery juice diet, stopping smoking, stopping drinking caffeinated drinks, and beating my head against the wall.
I'm sure the oral Doxy helped with my symptoms and so did the IV Rocephin, but taking the IV Vancomycin/Septra seemed to almost completely knock out my primary symptoms.
I'm not taking anything specifically for Lyme now.
I can't say exactly what did it - I guess the combination (?) over the long term but that's what did it for me.
Maybe some of you can talk your doc into letting you try IV Vancomycin for a month - at theraputic levels as determined by blood "trough" levels. Wouldn't it be a kick in the *** if Vancomycin really KILLS the little Lyme *******s !!!!!!! Posted by Andie333 (Member # 7370) on :
Coyote,
Congratulations on your success; I'm really happy for your progress, and I'm so glad you wrote and told us about it.
I started treatment in June 2005 after being undiagnosed for about 9 years. At that point, I would have ranked my overall health at about 18%.
Now, I'm at about 80% and back to work fulltime. I've also started walking three or four times a week. All of it's helping! Being at work keeps my mind off of being sick, and the exercise seems to give me energy.
I continue to see small improvements each week.
I really agree with what you said about getting enough sleep. For me, that's been vital. And trying to stay hopeful. That's why reading stories like yours is so important. You give me hope!
I wish you continued healing!
Andie
Posted by Boomerang (Member # 7979) on :
Thanks for the recap, coyote.
So, the IV Vanco was a good drug for you? Interesting........
[ 13. June 2007, 11:17 PM: Message edited by: Boomerang ]
Posted by Coyotecrazy (Member # 6707) on :
Thank you all for your well-wishes and congratulations and I want you ALL to know that one of my fondest wishes is that ALL OF YOU could get treatment that would relieve your symptoms and get you well!!! Being sick SUX the big one!!
This site was truly a "lifeline" when I fell overboard and didn't know what to do. You all also gave/give lots of good advice that I was able to 'run past' my doctor, since he didn't really know some of the more recent treatments and because he let me 'TRY' some of the things that I read about here.
Thank you all so much and I'll look forward to chatting with some of you, again, on Lyme Chat .... that was really fun, you all are really nice people and I REALLY enjoyed chatting with you 'live'.
Best,
Janet
Posted by boatergirl (Member # 12204) on :
Coyotecrazy, you mentioned visiting Kansas City for treatment. Can you tell me where? My husband has Lyme and we are looking for more options! Thanks!
Posted by bettyg (Member # 6147) on :
welcome boatergirl,
please EDIT MY PROFILE and change it to ALLOW PRIVATE MESSAGES, PM, from us. you have control to block anyone if harassing you & reporting offener!
i'd like to send you my 58 pages newbie's links, advise, symptoms list, igenex testing, preparing for 1st llmd appt., disability, much more, and
treepatrol's newbie link of 1000 sites of good info!!
i can also assist you on find a llmd for hubby, but that needs to be done PRIVATELY BY PM.
no posting of llmd names on the board except for those having been brought up on state health dept. charges and there are hearings going on! Posted by kylasrain (Member # 12031) on :
Thank you so much for posting this. I've started to wonder if people actually get better! It can get a little depressing.
I started treament last Nov., 2006, and after reading many blogs, have realized that I have a long way to go. Plus, I found out that I have bart and babs, so treatment gets more complicated as do the symptoms. Luckily, I have a great teaching job with good insurance, so I have been able to pay for the abx and doc.
Its hard keeping up with my job but I keep reminding myself of all of the people on this site who can't even get out of bed.
Thank you SO much for sharing! Please keep posting so we know you if you continue to get better!
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