Soory you are having a hard time of it. I know it is difficult not having a diagnosis...

From your description it certainly sounds like lyme.

Does your md know that you can still have lyme with a neg. test?

My test was neg. until 4-5 years of antibiotics and now my immune system has turned on to fight it.

you need a llmd...do you have on?

daniella

 

I've never tested positive. My treatment has all been based on history, exposure risk, and response to treatment.

Here's an explanation that might work for your family:

Healthy people produce antibodies to infections. WB checks for antibodies. When you are very sick, or if your immune system is not strong enough, your body is not able to produce enough antibodies to show up on the test.

There is a lot more to it, of course, and 2 more extensive articles are at http://www.sonic.net/~melissk/wb.html and http://www.canlyme.com/labtests.html

The ILADS Basic Informationis also very clear about why seronegative tests are suspect. http://www.ilads.org/basic.html

It's very upsetting to get the negative results -- I cried buckets when I got mine. But don't let that stop you from getting treatment and pursuing this all the way.

[This message has been edited by minoucat (edited 26 February 2005).]
 

but my family don't i can't explain to them how this works and yes i have a lld......he is great i haven't talked to him about the test yet..........

it just makes me feel like i'm reading more into my symptoms than i'm suppose to ........like trying to diagnose myself...

people say whats wrong amy you look sick,flu? i say no i have lyme......well how do you know you have it .........well i have all the symptoms and maybe the heart problem is hereditary and the arthritis from papaw and i'm just looney cause i have kids and maybe i'm just getting older and body catching up with the hell i put it through in teen age years....

who knows guys just wish i had some honest to god truth and my family would quit thinking i flew off the cuckoos nest...........if it wasn't for this site i'd done flew a couple weeks ago.................you people are great.........thanx........love and god bless all................amy
 

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Lymetutu

 

Something to share with family and friends

Dealing with unsupportive family/friends does make things extraordinarily difficult. It can be an additional and terrible trauma. Which is why Lymenet exists....

I've found that giving too much detail tends to backfire. The detailed explanations we look for are important to us, because we have to make such weird treatment decisions. But they don't make sense to people who haven't been through this.

Folks with other diseases don't seem to try to justify the technical side -- I have friends seriously ill with diabetes, cancer, Hep C, and they just say things like "The doctors think this is a serious issue" or "I've been warned to expect such and such."

So you might want to limit your information sharing to "The doctor says this is serious. He says I can expect such and such to happen. He has a lot of training and experience in this area, so I trust him."

And if there is a sensible person in your family who could be a good advocate for you, ask if they'd like to go with you to the next appointment -- it might help.

 

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Lymetutu

 

We didn't know where to turn for an answer to this disease. It's then we talked to a lady from a lyme support group, who put us on the right track, with an LLMD.

Lyme is a clinical diagnosis, the bloodwork is just another supporting factor in the overall diagnosis of lyme.

Doesn't really matter what the bloodwork shows, if your LLMD is treating you, and he believes you have lyme, that's all that matters.

Are you currently on abx ? Is your LLMD willing to continue treating you with abx despite the negative test ? If so, that's all that really matters.

You can try retesting down the road, and it may show up then. Did a reputable lab perform testing ?

As far as the family.........just tell them that the Doc said people often show negative, because the bacteria tries to avoid the bloodstream.
 

dr. m is a great ld ....i haven't talked to him yet about the neg. test........

i just wish i had answers to all of this.......not so much for myself cause i already know i have lyme from the positive test in 93.........besides all the symptoms i have

i quit taking my abx's not cause the neg. test but because my baby has had the flu and was in hospital.......i wanted to have enough strength to take care of him and get him better.........

i'll start back tomorrow.......i'm going to call dr. tomorrow lymetoo and i'll email my results to you , i'll have them faxed to me.

yea i got the test back in a week and i don't know if dr. m had them sent to ignex or where but i'll ask tomorrow when i call.........

thanx again everyone for all the advice.......you all don't know how much you help..........god bless each of ya..........

amy
 

quote:

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Originally posted by amylg:
i'll start back tomorrow.......i'm going to call dr. tomorrow lymetoo and i'll email my results to you , i'll have them faxed to me.

amy

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Cool. I'll be waiting. Probably the overall test rating is negative, but if you have positive specific bands, that can mean everything.

My overall test was neg too. But I'd had it forever and my immune system couldn't register much of a response.

Hope your baby is doing much better!

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Lymetutu

 

I know many people who had negative tests early on and who later, after some treatment, had a positive western blot.

I am e-mailing you a great paper by Carl Brenner from the mid 90's on the Western Blot. It is a good thing to have on hand, and if you can get any of the "doubters" in your life to read it, it might help.

The main thing is not to let the tests rule your confidence or attitude. You need to say you are in good hands, you have a good doctor, the tests are not that important, the fact that you are being treated is a huge step forward, and that you are going to beat this stupid disease.

Going off the antibiotics won't set you back, "pulse-ing" the meds is even commonly recommended by many docs. You did the right thing.

I hope your little one is feeling better now. Hang in there!

Ann - OH

dr. m is a good dr. ......but i'm just wondering were they sent my lab.........

i'm going to ask them to fax or mail me a copy of the lab.......

thanx all for your help.........good people make hard times easier to deal with......

amy