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Old 07-31-2006, 10:42 PM   #1
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not sure what to do now

Hello all...I have been reading postings and now have decided to write...out of fear i think... and ignorance....Three months ago I went to the clinic because i was out in the sun for a few hours and broke out in a measle like rash on the insides of my arms and my legs, my ankles and feet began to swell and I decided it was time to go....Doc said it was probably an allergic reaction to something, could be anything....I decided to share with him some other health issues that had been bothering me (figured I'd get my moneys worth!)....hands were stiff upon waking....feet felt as though they were bricks....glands on the back of my neck were swollen....that got his gears turning and he wanted to test for Lyme though he felt it was a long shot....I remembered pulling a tick off the back of my neck maybe a month before....I waited a week for results and sure enough i was positive, nurse said good news was that they did another test to test the "levels" and mine seemed to be low, hopefully easy to treat...I was shocked and scared I had noticed the same rash on my three year old daughters forehead and along her hairline...hers had come and gone in a day or two...I now wanted both my children tested (my 7 yr old came home from a school field trip with a tick on his back). I feared for my entire family my yard is the one everyone plays in!!!! We had ticks so bad they were climbing the walls of the house, we had the bug guy spray and poof they were gone....So I was scared for all of us....I had my nephew tested....they would not test my niece (tick, but no symptoms), my roommate, my best friend her two kids and my children...out of all of them My baby girl tested positive, three years old...i was mortified...They put her on amoxiciilin for ten days and pharmacist did not think that was enough so I had to practically beg the nurse to extend it to 21 days....they put me on Doxy 100mg tab twice a day for 21 days felt better after about a week but still had tingling, numbness, stiff joints....finally the last week I felt energy again...for about a week. Then I started to feel the symptoms creep back...I think a lot of you understand when I say you can 'feel' this take over....Doc put me on another 21 days of doxy 100mg twice a day....still am tired having joint pain but feel better....hoping to end this all soon....I am worried about my daughter how can a three yr. old tell you how she is feeling....was her treatment enough....they did not do the 'levels' test on her. Will my treatment be enough? Reading other postings I am unsure...I am in NW Illinois and I know Lyme is abundant here... neighbors, friends, and so on have tested positive....but all rely on the local docs....should i look further? Any thoughts would be wonderful....just trying to do the best for my baby....thanks for listening!

 
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Old 08-01-2006, 05:58 AM   #2
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Re: not sure what to do now

Hi Nobby.....sorry to hear you and your baby have lyme...but the good news is Yeah you got a doctor to test you...that is a step in the right direction...BUT .....yes I feel your baby needs to be on antibiotics way longer than they have had her on...And so do you...plus that isn't a very high dosage for you either....did they test for co0infections???? On either of you??? Possibly if you can't get your doctor to give you longer treatment and highger dosages...then possibly you need to go to another Doctor....And all of the others that tested negative....I sure would watch them....

Sure Ticker or someone will come on and give you names of other doctors in your area that treat lyme.....

Good Luck to ALL of You!!!!
]

 
Old 08-01-2006, 07:39 AM   #3
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Re: not sure what to do now

Thank you jojo for your support....I had a very bad feeling the meds were not adequate....my daughter seems fine, but now for the past two days has had a raspy voice....everything, every little thing makes me second guess the treatment....i hate to put her through the labs again....she was so scared and of course it hurt....neither one of us were tested for coinfections. I know this because i asked the nurse right after the positive test results....she said they only tested for those if treatment failed....I fear this disease but I am willing to fight it....we are treating our lawn and house agressively, i hope the doctor will listen to me, I don't think he even knows what to do....he and the lady from the health dept (positive lyme tests are reported here) admit they are learning themselves....i feel the only authority on the lyme available to me are those of you who are or have experienced this....even on this doxy i feel the tingling in my hands and feet...i have a loss for words so common i feel frustrated to have conversations even with my kids....i have an infection in my mouth that stemmed from my daughter scratching my gum trying to make me smile....it just does not want to heal even though i am on doxy which is used to treat gum disease!!! I am looking to find the next step....thank you once again....I am going to hope someone comes along with a doctor reference....thanks again

 
Old 08-01-2006, 07:45 PM   #4
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Re: not sure what to do now

Nobby
I am so sorry to hear your story. Its bad enough for an adult but when its a sm child. I know your heart must be breaking.

There is a great doctors thread at the top of the lyme board. You might check there and see if you can find one in your area.

I'm sure someone will come on from your area soon with info.

My advice is read and learn as much as possible on these diseases. The co-infections can be as bad as lyme. And they complicate treatment. The more you learn the better able you will be to know what to expect and what the doctor should be doing. I hope you get anwers and are both soon on that road to recovery.

Prayers....Marsha

 
Old 08-02-2006, 09:08 AM   #5
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Re: not sure what to do now

Marsha thank you so much for your support here and on my other posting....i am collecting data as we speak to present to my doctor...I hope he will help us if not i am going to try to see dr. crist in mo....my doctor returns friday so we will see how he responds....he himself is learning about lyme so i hope he is open to the knowledge i have received....wish me luck!!! I will keep you posted.....heidi

 
Old 08-02-2006, 08:14 PM   #6
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Re: not sure what to do now

Heidi
I pray your doctor will be open to learning how to best treat lyme and the Co's. I do suggest printing out info to take with you. Your Dr may be open to learning, if so be prepared to give him alot to learn.

Feel free to come on and ask any questions that you think of. We're here to encourage and help you.

Praying for you and your daughter.....
Marsha

 
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