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Does it stay or go away?
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by desertgirl, Sep 26, 2007
I was bitten by a deer tick in 1998, I was very sick for months and took a ton of antibiotics. I had the classic bullseye rash and very high fever. Ever since then I am always sick, there is always something wrong with me. I am only 39 and I feel like I have arthritis in my legs. Somedays I cannot even get around. I haved asked many doctors if this stays with you or does it go away? Never got a straight answer. Does anyone know?
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Member Comments (34)
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by tory2457, Sep 26, 2007
I can only offer my opinion,,,from what I've learned, read and experienced.

It sounds as if you were treated according to the IDSA guidelines.

I would suggest you find a doctor who specializes in Tick-Borne Illnesses. Lyme disease and the co-infections that go with this illness isn't easily "cured" in a few weeks time. Although, the current guidelines state just that.
You don't get a "straight" answer because of the current guidelines. They don't believe in Chronic lyme disease. Another words, it's all in your head. At 39 it's normal to feel lousy..!

It's your health, like the rest of us, we needed to become our own advocates and learn about this disease.

There are doctors who can help you find your way to good health. Many of us have to travel to see one of these good souls..until the guidelines are changed we stand alone (as a group)  in the fight to wellness.

ilads.org

Good places to start to read and ask questions.

Best to you,
tory
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by desertgirl, Sep 26, 2007
thanks for the info, i will check it out.
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by cave76, Sep 26, 2007
Tory  said it best.

You will have to fight long and hard to get the correct treatment, as a lot of us have.
But the fight is worth it.

From your screen name, are you by any chance in the Southwest of the US?

If so--- your chances of finding a nearby llmd may be more difficult.

There is at least one in that area, who believes that people can be helped by his protocols, which often include alternative 'cures'.

You will have to make up your own mind if you want to go that route. I, personally, wouldn't.  These tbi's are bacterial infections that need abx to kill them. Even then they're hard to eradicate.

Not that some herbs and supplements aren't a good adjunct. But not INSTEAD of abx.

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by tory2457, Sep 26, 2007
desertgirl,

I will now agree with cave on needing abx in order to get rid of this infection. I agree also, that alternative means is always a good idea. I supplement with lots of vits and minerals such as B12, Magnesium, Fish Oil; but I am using antibioitcs to get better..for a year now- and I have had 2 colds.

btw, Read about why we can be on long term antibioitcs...and don't become resistant.  

I can tell  you that at age 30 I was diagnosed with MS. Treated for it ( when they came out with drugs for MS), and after reading about the Lyme/MS connection, decided to get a lyme test.

yup, I have Lyme disease and am getting well.

Misdiagnoses unfortunately happen, lyme is the Great Imitator....

Hoping you begin to get your life back,
tory

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by desertgirl, Sep 28, 2007
thanks everyone for your posts. i am still rather confused about this whole thing, i already have chronic fatigue syndrom, ebstien barr virus. i have been seeing a new doctor and today was my second appt. i brought him all of my paperwork from 1998 to show him i have lymes disease. doctor after doctor told me it goes away. well it doesn't and that explains why for the last 9 years i have been very ill and have not been able to hold a job for a year at a time. over the last year it has gotten worse, i never go anywhere and i cry alot from all the pain when i do get out. i had a feeling it was some sort of arthritis. anyways the doc says there are three stages of the disease and i am probably in the second with onset symptoms of rhemotroid arthritis (sp?). i have tried looking up info on the net but all i get is mumbo jumpo! does anyone know if this could be true?  i have to get more blood test to be sure, but they have always shown negative.
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by tory2457, Sep 28, 2007
I hope others jump in here also...

this is what I know.
yes, LD does effect our joints --IT LOVES our joints and synovial fluid.

The 3 stages? of LD..yes, the spirochete turns into a Bleb, then cyst form and in between there is the L form..Research states that when it turns into a cyst form this VERY smart bug can then go back to a spirochete.

you're not alone in being confused about LD. Hang in there and continue to read and ask questions..

Are you seeing what we in the lyme community call a Lyme Literate Doctor? or LLMD? Is this doctor a member of ILADS?

If not, you probably won't be treated long enough. (that's another story).

First things first, find a doctor who understands LD and all the co-infections that goes with it...

and then you will begin to recover.

I have a sister-in-law that has similar symptoms as you. But she even had Sjogren's along with CFS, RA.. . after 20+ yrs of struggling with her health and then learning about my new diagnosis; she get an IGeneX test, and yup she has LD along with a CDC positive test for Babesia! Wow was she surprised..

she too is on her road to recovery.

the best,
tory
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by patsy10, Sep 28, 2007
I would suspect late stage lyme (3) by the amount of time you have had it.  I really don't think it is curable at this stage but I think it can be treated to some degree.
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by cave76, Sep 28, 2007
Your plight is the same as thousands and thousands of others. Get to an llmd if you can.

I have had nothing but negative blood tests for Lyme---- but got "lucky" with my first spinal tap with a positive.

So blood test results mean nothing in Lyme.

Then why take them?? Sometimes the patient just has to see that "positive" before even they believe it, if they haven't done all the reading to understand how that can be.

Other times, it's because the insurance companies want to see that 'positive' so they've pay on it.

However, even the CDC states that Lyme is a clinical decision. But it usually means a Lyme Literate MD is the one needed to make that clinical decision.

I'll post a really good explanation of how one can have a negative blood test and still be positive with Lyme. (And it looks as if the other tick borne illnesses may be following suit. :()
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by KYLYMIE, Oct 26, 2007
Hang in there! I'm in KY...another "Lyme isn't here" state.  I'm in the "final" stage i.e. heart, lung, brain damage.  I assume that you've been to LymeNet, you'll find the most, the best and the correct LD info there..at least that is what I believe.
I was on IV Rocephin for nearly a year when I began to feel GREAT.  Then my line came out. My doc here refuses to order another PICC line and my hero doc in NY has closed his practice to focus on research.
Don't stop searching for a LLMD.  Arm thyself with any LD info you feel applies to you and have a sit-down with them.  Let him/her know you know about this monster!
All the best,
KYLYMIE