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Diagnosed, need more advise!
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11/17/2008 18:08
king2626
Posts: 98
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 Hi guys, so Dr G diagnosed me today based off clinical findings. She said that 31 is highly indicative of lyme and that they typically like to see 2 bands pos and/or a bite but she feels I fit the lyme picture based off how my symptoms started etc. She said once I start treatment she thinks the IND of 41 and 34 will be pos along with others.

So now I have a new concern. Did any of you fear what if you DIDNT have lyme and you hurt yourself with all the meds? I am the type of person that likes to see fact in writing, LOL, I want the numbers etc...BUT I do feel I have lyme due to everything going on in my body and the other neg tests etc..

I am going to be taking Zithromax, Doxy and Flagal.....I weigh 105 and am scared that this is too much for my body to take?
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11/18/2008 07:23
cave76

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 king said:

****Did any of you fear what if you DIDNT have lyme and you hurt yourself with all the meds? I am the type of person that likes to see fact in writing, LOL,***

Oh, yeah! LOL I wasted almost a year trying to find another reason for why I was sick. Of course a lot of doctors, friends and family assisted in that crazy thinking! LOL

Then why will I tell you to settle in and keep on treating? Because that delay was probably a good reason why my Lyme was so persistent and hard to treat.

You said:

****you hurt yourself with all the meds?****

Well, I 'took a chance' (for I also thought that abx would hurt me) WRONG. Not when the untreated disease itself would more likely kill me than the abx.

Read all the success stories. Most of them had to take years and years of abx. Did they get 'hurt' by them? NO. They just eventually got better and back to their life.

You're doing the correct thing by following your doctors advice. Your weight (as an adult) will have nothing to do with it---- as long as your doctor knows your weight.

I wanted something 'on paper' also. I had nothing by negative test results. I was treated on clinical symptoms by a knowledgeable llmd.

Done nothing but get better---- but it wasn't fast and it wasn't all upwards.

Stick with it!

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11/18/2008 07:54
cmany
Lime Green Ribbon
Posts: 561
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 King...

Many of us have spent years being sick and with docs playing with out lives and health...and where did it land us...more and more sick...

I did about 12 yrs straight of abx, with regular blood tests to make sure that my liver and such were doing ok. I have hardly any damage from the abx...but now my body is so damaged by the Lyme despite the years of treatment, on top of years being so broke that I cant afford any treatment at all.

Dont play with your life. And if you are terribly concerned about the abx, work with your doc to determine a long term plan which phases out the abx and gets you on to the alt therapies. For some, aggressive abx to start is going to help get things more under control...you have a lot of options...dont let fears and misconceptions hold you back. The thing about lyme, is that it really doesnt build up a resistance to the abx, it has to resort to changing forms and hiding...and that in itself is a plus...

Be wise - you can always make changes later on...

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

Popular posts by cmany
    Cumanda
    My New Protocol
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11/18/2008 08:19
fluffyluggage
Lime Green Ribbon
Posts: 1278
Senior Member

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 I have to agree with cave and cmany. If you read any of the info I sent you, you'll also understand that the testing is so flawed for this disease, and it's really a clinical diagnosis anyway. The most specific bands for LD are bands 25, 31, and 34, with 41 being pretty non-specific (it's for a flagella and just about everyone tests positive!)...So, with 31 being positive and 34 being IND, I'd feel pretty certain, if it were me, that I had LD, and I'd be throwing my hands up in the air and doing whatever dancing I was capable of!! You do really have a diagnosis. The problem with LD and with us and all the docs is that we spend so much time running around trying to get a diagnosis, that we start to question it the second we get it. I feel confident you are on the right track. Start to trust that you have the right doc to work with you. If you have problems with taking conventional ab's, consider a natural protocol...There are other methods, and many people have gotten better on both protocols. You must have faith in yourself!!! I fully believe that your attitude plays a huge role in how you react to treatment, too! Keep doing your research, and keep talking to us, don't close yourself off. If you need anything else, please feel free to send me a PM, too! *hugs*

Jen

Just because it's impossible doesn't mean it can't happen.

I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.

I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!

The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.

Popular posts by fluffyluggage
    feeling alone
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11/18/2008 10:13
king2626
Posts: 98
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 Thanks so much all, glad to know I am not alone. It is funny, I was so worried I wouldnt get a dx and the moment I did I think, well how do I REALLY know thats it. Then I have to remind myself on how quickly most of this (aside from twitching, numbness)hit me at once (a few days)and how many tests I have had.

I am going to make another post about the antibotics I am on, just to see if you guys were on these at first..

Thanks again, what a great support!
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11/18/2008 12:16
PegB
Posts: 191
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 Yes, you've been given good advice in the above posts. I remember having the same response when diagnosed, first "Hallelujah, a diagnosis" and then "but, really, is it Lyme?"

After 3 and a half months, I'm starting to feel somewhat better. Lots of abx and supps, but ya gotta do what ya gotta do.

Hang in.
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