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Old 03-06-2006, 09:33 PM   #1
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New To Board, but not to Lymes

This is my first time posting to the board. I have been here for months reading other Lymes posts and always thought I should take part instead of just reading.
I have had Lymes since August 2004, but was not diagnosed til April 2005. At first it was my fault, not knowing anything about Lymes. I got a small, nickel-sized red rash that was clear in the center that expanded til it was about the size of my fist. It did look like ringworm at first. After about 8 weeks, it began to fade and another rash began on one of the leading edges of the old rash. It, too, expanded to fist size. My family doctor was just sure I had lymes and started me on doxy and did the Elisa which came back negative. He kept me on doxy for 3 weeks to be safe, then that was it. I still had the rash and yet another one was beginning to start on the leading edge of the second one. In January, 2005, I went to a dermatologist who refused to consider Lymes and thought it was a fungus because he said that if it was Lymes, the rash wouldn't have stayed that long and kept repeating. He did 3 different fungus tests, 1 of which was a biopsy and they all came back negative. He wanted to put me on some meds that could potentially damage my liver so I decided against it since I didn't have fungus anyway. I wasn't sure what it was, but I was sure it wasn't fungus.
Finally, a friend of ours that had had Lymes recommended my doctor who is a definite LLMD and a fantastic one at that. That was when I started getting my answers. After a ton of tests last March, I was diagnosed with Lymes as well as the co-infection Borreliosis and Mycoplasma. My doc jumped right on it and started me on Mepron/Zithromax combo as well as a multitude of supplements. I had to do a major change in diet as well, with no sugar or yeast products. I used to have a Coke in my hand from sunrise til the time I went to bed and I thought that alone would kill me. I did that combo til August of 2005, then was changed to Ceftin. I took Ceftin til about Thanksgiving, then changed to Tindamax/Zithromax combo. That went well for the first couple of months, then had some kind of reaction (not a herx) and had to change to Doxy. I will take that for 2 months, then go with the Clindamyacin/Quinine combo. By the way, when I went to my LLMD last week, she said I could now have small amounts of sugar and yeast products in moderation. I went right out and got a cheeseburger, fries and a coke. And guess what...the Coke tasted "funny" and I haven't tried another one since (which was 10 days ago). I have done really well on all the treatments I have been on so far, but I'm a bit nervous about starting the Clinda/Quinine since I had problems on the cyst-buster Tindamax.
Can anyone tell me what I might expect with this combo or is it a fairly easy one to tolerate?
By the way, thanks to everyone for all their posts I've read. It is a comfort to know that there are so many of us out there that are demanding answers to this disease. If we keep "banding" together, we'll all do so much better with our health and our healthcare. Sorry this was so long, but once I got the courage up to speak, the dam broke!

 
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Old 03-07-2006, 06:47 AM   #2
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Re: New To Board, but not to Lymes

Sickofticks
Welcome. Your name speaks for all of us. So sorry you are facing this but you are not alone. We're here if you need us. Prayers....Marsha

 
Old 03-07-2006, 08:09 AM   #3
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Re: New To Board, but not to Lymes

Hi SickofTicks. Glad you decided to post.

Gosh - you seem to be doing a great job fighting this disease! Are you feeling better than last year?

I have not tried the Clinda/Quinine combo. Good luck with it.

I have tried Ketek, Ceftin, Omnicef. Now I am on Tindamax, Bicillin and Doxy. The Doxy seems to be helping me but I have to keep a close eye on my liver enzymes.

I can sure relate to giving up the soda. I was a Diet Coke feind. First thing in the morning - boy it tasted good. I was able to cut down but not give it up completely. Then I started the Tindamax and my sense of taste and I was finally able to kiss it goodbye.

I'm glad to hear you are seeing an LLMD. Sounds like you're in good hands.

Peace and health to you.

 
Old 03-07-2006, 11:17 AM   #4
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Re: New To Board, but not to Lymes

sickofticks,

love your name. Just remember, even though you didn't know much about Lyme, it was not your fault!!!! We can't keep taking the blame, none of us asked for this, and the fact that we are all here seeking information shows that we are all trying our best. Glad you are doing well on your program, thanks for posting and I hope you continue to do so. Just the fact that you gave up all that coke shows how much will power you have. Congratulations!!!

Jeanne

 
Old 03-07-2006, 11:33 AM   #5
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battling on HB User
Re: New To Board, but not to Lymes

HI sick of ticks.
Welcome to the board, loads of support and lovely peeps.
be back to catch up soon.

Jules xx

 
Old 03-07-2006, 12:17 PM   #6
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Re: New To Board, but not to Lymes

Hi SickOfTicks, welcome to the board! It is good to see you posting.

I am sorry you have Lyme and co-infections. Doctors are supposed to know about Lyme disease, but the majority of them do not. One major reason people get so sick is because of this ignorance. It sounds like you are getting aggressive treatment, which is good.

Are you going on the Clindamycin and Quinine because the the Babesiosis is back?

 
Old 03-08-2006, 08:19 PM   #7
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Re: New To Board, but not to Lymes

Quote:
Originally Posted by ticker
Hi SickOfTicks, welcome to the board! It is good to see you posting.

I am sorry you have Lyme and co-infections. Doctors are supposed to know about Lyme disease, but the majority of them do not. One major reason people get so sick is because of this ignorance. It sounds like you are getting aggressive treatment, which is good.

Are you going on the Clindamycin and Quinine because the the Babesiosis is back?
Ticker, my last blood work said the Babesiosis is gone and we are supposed to be working on the cyst-busting phase for my blood. My last pics of my blood looked so much better, but the culprits had formed cysts around themselves. That's why the Clinda/Quinine combo. I'd been on the Tindamax for a couple of months around the holidays til I had an allergic reaction and had to stop...so my doc put me on the doxy after a week rest until I could get to the city to see her. She didn't want me to stay on the doxy though with Spring coming on because of the photosensitivity problems because I do like to be outdoors when I can. I am so looking forward to it this year because this time last year I spent a big part of my days inside sleeping or just laying around because I was so tired. I do still have problems getting easily fatigued, but it's getting better slowly. I am beginning to find now that if I can stay busy during the day, I can stay awake, but it usually means an early bedtime at night. I used to be such a night person too that it's hard to get used to being so tired all the time. At least most of the rest of my problems like joint pain, headaches, brain fogs, memory, etc. have nearly disappeared. Thanks for your interest and your thoughts!

 
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