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Lyme Disease ForumsGeneral & SupportDiagnosed, need more advise!
11/17/2008 06:08 PM
king2626
Posts: 116
Member

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 AM  Top
cave76

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) Smile 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! Smile


11/18/2008 07:54 AM  Top
cmany
cmany
 
Posts: 6204
Group Leader
I'm an Advocate

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...

Cool

Christine

[b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid

11/18/2008 08:19 AM  Top
fluffyluggage
fluffyluggage
 
Posts: 4723
VIP Member
I'm an Advocate

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! Smile 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.

Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version)

11/18/2008 10:13 AM  Top
king2626
Posts: 116
Member

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!


Previous discussions I participated in:
Need info on bands please!
Please help me

11/18/2008 12:16 PM  Top
PegB
Posts: 197
Member

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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