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Old 08-03-2006, 08:26 PM   #1
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LuciaLammermoor HB User
Recurrent Lymes Questions?

Hello, I'm new to this board, I wish I would have found it years ago.

I was first diagnosed with Lymes in 1999. (Got it in Westchester, NY) I thought I was getting TMJ, but then found a bullseye, and (surprise!) a rash that measured 13" on my back. I was treated with docyxclene (can't spell) for two weeks. Felt better, then about two months later the symptoms came back. Of course, no one believed me, I finally talked to a doctor who prescribed a month regimen of Augmentin. The Lymes seemed to go away.

I was then reinfected in 2001 in (San Francisco), found another bullseye and the symptoms came back again. I was again prescribed doxcyclene, again I failed it. I went to an infectious disease DR and they prescribe CIPRO for 2 weeks.

Then I had recurrent symptoms in 2003. Went to an infectous Dr. after needless testing for everything else. I got put on Augmentin again, and then had a horrid spinal tap. Which came back negative.

I don't think I'm crazy, but what have people here experienced with chronic lymes? Does it seem to cycle or lie dormant? I feel that I'm still having symptoms, and that recently they're getting worse again. (twitchy, tired, achy, wobbly, you all know) HELP! I'm sick of being told I'm crazy!!

thanks

 
Old 08-03-2006, 09:42 PM   #2
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TINUVIEL HB User
Re: Recurrent Lymes Questions?

Hi,

Welcome to the board though sorry you have to be here.

Sorry this is going to have to be a short post, but I did want to respond until someone else posts.

Yes, Lyme can indeed recur. 2 weeks is absolutely NOT long enough. It didn't "go away" it went into your body tissues. The Lyme literate recommendation is 400-600 mgs doxy for 6 weeks IF it is caught within 2 weeks of initial infection, if it's been around longer than that further treatment is required. Some doctors only give 3 weeks but there is a high rate of relapse if less than 6 weeks is given. Of course, since some ignorant folks don't know about Lyme relapse (it's medically documented) they wouldn't acknowledge this.

As for the spinal tap, less than 5% of all active Lyme cases have a positive spinal tap.

Last edited by TINUVIEL; 08-03-2006 at 09:44 PM.

 
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Old 08-04-2006, 09:40 AM   #3
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LuciaLammermoor HB User
Re: Recurrent Lymes Questions?

Thanks for the info...I've read a number of articles on cases of relapse, but it helps to be able to actually connect with others concerning it. Especially about the spinal tap, which I reluctanctly agreed too, and was hospitalized for over a week because they used too large of a needle, leaving a huge leak of spinal fluid and extremely painful sideeffects. After having that done, my doctor basically wouldn't see me again, or insisted on running a myriad of unrelated tests.

I'm feeling lymey again, word confusion, exhaustion, weird pains, and recently a little twitchy again. I haven't yet had any debilitating symptoms. But I'm wondering, what has worked for some people on this message board who are in a similar situation as I am as treatment goes?

Thanks
heather

 
Old 08-04-2006, 09:41 AM   #4
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Re: Recurrent Lymes Questions?

Thanks for the info...I've read a number of articles on cases of relapse, but it helps to be able to actually connect with others concerning it. Especially about the spinal tap, which I reluctanctly agreed too, and was hospitalized for over a week because they used too large of a needle, leaving a huge leak of spinal fluid and extremely painful sideeffects. After having that done, my doctor basically wouldn't see me again, or insisted on running a myriad of unrelated tests.

I'm feeling lymey again, word confusion, exhaustion, weird pains, and recently a little twitchy again. I haven't yet had any debilitating symptoms. But I'm wondering, what has worked for some people on this message board who are in a similar situation as I am far as treatment goes?

Thanks
heather

 
Old 08-04-2006, 10:48 AM   #5
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Re: Recurrent Lymes Questions?

[I]Hi Lucial....seems as though you have been treated but definnatley not LONG enough...and only with one type of antibiotic it's not helping to deal with all the phases of lyme...You have had it for so long now that it is going to take a long treatment plan to get those little critters....This disease is nothing to mess with...

I think maybe it would be a great idea to possible find a doctor to treat you for a much longer course...I am sure others will come on and give you a name for a LLMD in your area....

Hope you find some answers soon...
/I]

 
Old 08-04-2006, 11:04 AM   #6
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TINUVIEL HB User
Re: Recurrent Lymes Questions?

Hi,

Your best bet, as for all the other folks with long-term (or for that matter early stage) Lyme is to consult with a Lyme literate medical doctor. It can take time to get in to see them, I had to wait 3 months, and travel out of state, but it is DEFINITELY WORTH IT.

I went there, was treated respectfully and concientiously, and was taken seriously. Probably because they had seen patient after patient with the same symptoms who have responded to correct Lyme treatment. Also because they had sufficient knowledge and expertise to really fully understand the effects of Lyme and co-infections and how these behave and are best treated.

I had it for many years, and not surprisingly I am in long term treatment. I also am very active in supporting my own health in any way I can, nutritionally, holistically, whatever. Although I am still recovering, I have made a tremendous amount of improvement with this doctor's treatment. But this would NOT have happened without my wonderful Lyme literate doctor.

I strongly recommend a book called 'Everything You Need To Know About Lyme Disease and Other Tick-Borne Diseases' by Karen Vanderhoof-Forschner. This is very easy to follow and is an excellent resource. As a Lyme patient you must be your own advocate, and knowledge is not only power, it's also peace of mind. Having correct information will help you make the best choices for your health care. Coming to this board is a huge step toward finding the information you need to get the right treatment and get well.

Last edited by TINUVIEL; 08-04-2006 at 08:42 PM.

 
Old 08-04-2006, 07:29 PM   #7
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Pearlscale HB User
Re: Recurrent Lymes Questions?

Welcome. And we all so understand what you are going thru. I was diagnosed 19 yrs ago and treated for 10 days. Then for years was told I was cured. No lyme test showed neg after the first one. Then this past fall I went on advice from a friend that had lyme to a LLMD. He tested me and I was co-infected. If you haven't been tested for the co-infections you need to be. I was not treated long enough and never for the co's until I saw the LLMD.

Please make an appointment, others can give you names of LLMD's in your state. Sometimes it means a long drive, but see a lyme literate dr. Get on his cancellation list.

Please keep us informed. We are here to help any way we can.

Prayers...Marsha

 
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