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I'm starting to question if it really is lyme

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Posted 2/22/2011 12:29 PM (GMT 0)
I've just ad my second test results back an they are also negative like my first ones, even though my LLMD as diagnosed me with Lyme disease I'm starting to question if it is really that or there is something else wrong as anyone else had thoughts like this, think it's just because I'm having a bad day an my LLMD as not been in touch with my doctor yet so I can start my abx I'm just feelin a bit down in the dumps. Thanks everyone for listening to me xxxx confused confused
Posted 2/22/2011 12:41 PM (GMT 0)
The tests are very inaccurate. A positive result likely indicates that one has Lyme, but negative test results do not rule out Lyme.

Also, everyone agrees (CDC, IDSA, ILADS) that Lyme should be a clinical diagnosis, and tests should only be used to support the diagnosis (not to rule it out).

If the symptoms fit, then it is a possibility. The only way to prove beyond a shadow of a doubt is with a culture test in which live Lyme spirochetes grow from sampled fluid (blood, joint fluid, CSF) or tissue (biopsies). But again, negative results do not rule out Lyme.

Lyme is extremely adept at hiding from and evading detection by the immune system, and consequently also is capable of fooling even the most sophisticated of tests.

I hope this helps...cheers,
Posted 2/22/2011 1:00 PM (GMT 0)
Thanks razzle
I've been diagnosed with it but I'm just havin a bad day, I've ad 2 good days an today feel even worse do u no if this is normal it's just gettin me down a little bit that's all but thank for the post x
Posted 2/22/2011 1:01 PM (GMT 0)
Thanks Razzle, just what I needed to know. I, too, am questioning my hunch that I have LD. I'm burned out on researching now but am back to listen and learn.
Posted 2/22/2011 1:10 PM (GMT 0)
Oldschool
There's so much to learn about this disease an so many symptoms think that's why I'm questioning it all, I no exactly what u are feeling an also I'm new to all this so any new information would be great, think it's the thought off I'm a going to have a good day or a bad day 2day an not having enough information about how 2 deal with this horrible disease x
Posted 2/22/2011 3:34 PM (GMT 0)
It is so normal and healthy to question as that's the only way to learn more about a disease which there isn't much known about. But give yourself the benefit of the doubt and trust your instincts. Only through being your own best advocate will you properly treated with this disease.
Posted 2/22/2011 5:45 PM (GMT 0)
Very well put Razzle & Springsjean!!!

It is very normal to have a day or so of really good days and then have several bad days in a row.

I'm finally back to this point. It's a lot better than just having all kinds of bad days!!! With so much controversy, different treatment modalities, and each of us needing such an "individual treatments" it's almost necessary that we question not only ourselves, but out docs as well.

With Chinese Medicine, treating tick-borne infections is called "Clearing Toxic Heat". Seems as though that would be pretty much cut & dry, but there are several different versions of this as well!

about all I can say is "hang in there!!"!! learn all that you can by reading for yourself & by reading and asking questions here and at your docs office!
Posted 2/23/2011 12:18 AM (GMT 0)
Hi 079,

I just had my third  Lyme test come back negative with no  co-infections.  My LLMD is of course still treating me on symptoms for Lyme.  

I often get disgusted with this whole Lyme thing----having bad days and then suddenly good days......all the antibiotics.....never testing postive.....tired one day....a headache the next.....elbows hurt and then they are 100% fine.

And there's the  ever present feeling of just not being the self I was a year ago---- like something has been stolen from me.  

I get very depressed and when that happens I start believing I have something else wrong with me--that it's not Lyme at all.

 Then I look at the progress I've made and go back to Lyme.  I'm on a treadmill I can't get off of.  

Even talking about Lyme is a complete downer....so tired of being asked how I feel.  

I just want this to go away!!!!   Don't we all.    Okay, I'm being a big baby at the moment.   Just soooooooo SICK of Lyme !!! 

But the fight must go on!  

I also just had a HUGE bunch of blood tests done (again)  for everything that can be checked.  Came back normal, perfect, and more perfect.    I should at least be very thankful for that. 

Now I forgot why I wrote this post...and I also couldn't pay for something properly at the store today.  The money made no sense to me.   Really bad brain moment !!!!  

Twenty minutes later I had to go to a business meeting......and was brilliant.

I guess Lyme IS like a box of chocolates. You just never know what you're going to get, moment to moment, day to day.   A tragic comedy.  

I'm burned out too.  

 

Posted 2/23/2011 2:33 PM (GMT 0)
079.... I think you are having what is called 'wishful thinking" if you doc says it even though blood test don't, I would listen to the doc if it is lyme doctor.

Don't let it mess with your mind. This is what it does. You have been robbed and beaten but you will recover.

did u get parasite stool test? Keep on going.... you not gonna let this win. check for thick blood. ISACS panel.

you have to be look Bengal Tiger....

imagine if you had no money or insurance to get treated........keep going Cat.
Posted 2/23/2011 4:03 PM (GMT 0)
I think we all need to allow ourselves to be sick & tired of being sick & tired sometimes. After I take one (or two) of those days, I will usually then go on feeling stronger again.
Posted 2/23/2011 5:19 PM (GMT 0)
Thanks every1 for replying just think I need 2 hear from people who are going through the same thing as I've done a lot of research on Lyme but never spoke 2 anyone with it so just want 2 thank you all again this site an everyone on here have kept my slightly sane lol xxxx
Posted 2/24/2011 9:42 PM (GMT 0)
bucci,
Parasite stool test?! Yikes, something else to hunt down. I have been suspecting "something else" after reading so many people's accounts and how much more they have suffered than little 'ol me. Man! some of the descriptions give me chills! I should count my blessings.

I am wondering if my "abnormally high" (Lyme IgG/IgM AB: 1.01) test results could be an auto-i response from flukes or something. I live on an old farm and have chickens and a dog and wonder if handling them (and my dog sneaking a lick on my face!) has infected me.

Herbert
Posted 2/24/2011 10:31 PM (GMT 0)
Never had a positive test. Clinical dx only. AND the Dr. that originally dx'd me 5 yrs ago(I was in denial...until 2 years ago) based his dx on a lot less symptoms than I have now.

Though I have a good Immunologist, he isn't going to jump off a cliff with me. He will help...some. Can't see a LLMD as I cannot afford it. So...I am on my own, winging it, reading sites like this, reading books, researching...

I have had my doubts as well. We are SO indoctrinated to believe without that positive lab/test/sign it isn't true. Sometimes you have to believe in order to see...
Posted 2/25/2011 2:00 AM (GMT 0)
I got a call today from the nurse at my LLMD's office. She was checking in to see how I was doing before my follow up appointment next week.

This is the second call from her in three weeks....so NICE to have someone who cares! She even asked if I wanted to speak to the doctor!

Anyway.....she has Lyme disease as well and has NEVER tested positive. 

Diagnosed on symptoms....treated on symptoms. 

She reassured me that my own symptoms are REAL and Lyme related and that my doctor will do everything in his power to get me well.....etc. etc.

I agree with Raw Runner.....that we are so indoctrinated in regards to lab tests.  

Hope everyone is having a good day!  

 

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