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Negative Or What?


Dizzy Dame
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Hi all,

I know this isn't a lyme forum, but I know that many here have POTS as well as lyme, and wanted to get some input.

My western blot came back today. It was positive for band 41 but not any other bands. The CDC criteria for a positive western blot is 2 positive bands, so my test was deemed negative.

However I don't understand how I could have a positive band and still not have lyme. Can someone explain this to me? Also, have any of you had "negative" lyme tests and still had lyme?

I'm not sure if I should still aggressively persue the lyme diagnosis or if I should look elsewhere for answers. I definitely have ALL the symptoms for lyme...many of which really only are seen in lyme and not in POTS (ie, chronic joint pain, numbness etc.)

Thanks in advance for any advice/answers/thoughts!

-Lauren

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The CDC criteria for a positive WB are as follows:

For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.

For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93.

But this was determined by statistical sampling and many doctors believe it's less straightforward than that. For example, some doctors/papers say that band 39 is specific for lyme but band 41 is not (other past spirochete exposure can cause it). Also, some doctors believe that in late stages of lyme, the IgG standard should be used, not the IgM.

For what it's worth, I had a IgM WB with 1 band positive and a IgG WB with 4 bands positive which my doctor decided was worth treating based on my symptoms even though it didn't strictly meet the CDC criteria. After a few months of antibiotics I felt much better. On a test 2 years later, all the bands were negative so presumably the treatment was appropriate. But again, I'm definitely not a doctor.

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Did you have an ELISA test as well? If so what were the results? Just curious.

I just had the ELISa test done, my doctor said you confirm a positive ELISa with a WB, so since min ecame back negative we didn't get a WB. I read that both tests can have up to a 50% false negative rate...

My doctor is now sending me to a rheumy to get evaluated for fibro, which has similar pain symptoms as lyme. Good luck! I hope you are able to figure out whats going on.

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Hey Claire,

My ELISA was negative, the WB was positive for 2 bands, but that's not enough to get a real positive result. The lab said the results were indeterminate.

As for fibro, I was diagnosed with it a few years ago, but when I was evaluated at hopkins, I was told I didn't have fibro after a very detailed work-up. From my understanding fibromyalgia is a wastebasket disorder anyways...just a name they give people with chronic pain when they can't figure out what else to call it.

I'm positive I have lyme...I just have to find a doctor who agrees with me. :)

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i have the chronic joint pain and numbness but i have only been diagnosed with POTS and NCS, no one has ever even mentioned anything to me about lyme. hmmmm...

i hope everything works out for you and that you find the right path to take.

dionna :)

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Hi Lauren, lyme testing can be so frustrating :) Which lab did you have your test done through? I have only had a CDC positive test through Igenex labs. For awhile any other lyme tests I took were completely negative. (I think I had 3 or 4 over the years) Now after a year on antibiotics I am starting to show something on the tests through other labs as well, although still not positive by CDC standards.

I agree with you that having 1 band, I'd investigate lyme further (just my personal opinion - I'm not a doctor!) I mean why would you show anything at all, right? And it's definitely something you want to be able to rule out 100%....

Did you have any testing for co-infections done?

Feel free to email me if you want to chat further.

Hang in there,

Pam

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Hi guys,

I've made an appointment with my GP and I'm going to ask her if we can just start antibiotics. I'd like to try them for a 30 day course and see if anything happens. I figure the worst case scenario is nothing happens, and I stop taking them, but if I start to feel better than what's the harm?

At this point I feel it's one of my only treatment options left because I've tried just about every drug for the POTS and while I've improved some, I'm still very, very disabled by it.

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from what I understand, 41 indicates a tail, the way a spirochete gets around. There are other spirochetes besides lyme, so this alone doesn't prove lyme. Or disprove it.

Many patients, and from my understanding, often those who are worse for the wear, are seronegative, but actually turn positive once antibiotics are given and the germ begins to fight back. You may want to ask for a trial of antibiotics and retest.

To put things in perspective, I was put on steroids for life for a supposed autoimmune disorder based on one suspicious test result (same as indeterminate) and a positive response to medication. In light of this, I personally don't see the harm in giving you a trial of doxy for a couple of months. Except that lyme is a politically heated and controversial diagnosis, and MG is not....ah, frustrating.

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Ariella,

You and I have such similar stories! My doctors for a long time have argued wether or not I have MG. The issue's still unresolved since I technically tested positive for MG but don't really have the kind of muscle weakness associated with the disease.

Thanks for commenting. Do you know of an article anywhere that talks about the seronegative results changing with antibiotic treatment? I'd like to present it to my doctor when I see her, if such an article exists.

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Hey Claire,

My ELISA was negative, the WB was positive for 2 bands, but that's not enough to get a real positive result. The lab said the results were indeterminate.

As for fibro, I was diagnosed with it a few years ago, but when I was evaluated at hopkins, I was told I didn't have fibro after a very detailed work-up. From my understanding fibromyalgia is a wastebasket disorder anyways...just a name they give people with chronic pain when they can't figure out what else to call it.

I'm positive I have lyme...I just have to find a doctor who agrees with me. :)

How annoying. My doctor was positive I didnt have lyme based on the ELISA test and the fact that I never had a rash when bitten by a tick. I read that 50% or people with lyme never get a rash! Doctors can be so frustrating.

and the fibro situation does seem a bit sketchy, they can't figure out why I am in pain so they want to perscribe an antidepressant?? that is weird. I'm not depressed, my body hurts! BTW - who did you see at Hopkins...I'm from that area (my family still ives there) and have thought about going.

Anyways....I hope all goes well and you get to start your antibiotics soon :) Take care!

ps- what is MG?

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MG is the initials for Myasthenia Gravis, which is an autoimmune neuromuscluar disorder that causes muscle weakness after exertion.

I've PM'd you about my doc at Hopkins, but he's an MG specialist...who ultimately was a bit of a disapointment when it came to thinking "outside the box". He ended up referring me to mayo because he didn't know what to do with me. However, if you think you may have MG he's the guy to go see...but if you don't think you have MG, then there's not much he'll be able to do for you.

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Hi guys,

I've made an appointment with my GP and I'm going to ask her if we can just start antibiotics. I'd like to try them for a 30 day course and see if anything happens. I figure the worst case scenario is nothing happens, and I stop taking them, but if I start to feel better than what's the harm?

At this point I feel it's one of my only treatment options left because I've tried just about every drug for the POTS and while I've improved some, I'm still very, very disabled by it.

Hi there,

I think you are smart for thinking about doing the trial of antibiotics. It isn't probably going to hurt and it may help you decide whether or not you have lyme. Seems to me you have been wondering about it for awhile. It can help put it to rest one way or the other.

A trial of antibioitcs was the only way I knew for sure I had lyme. No doubt in my mind after my first day on the antibiotic. I immediately felt the antibiotic doing something. It was defintely killing something and my body let me know. If there was nothing there to kill my doctor said the antibiotic would not make me feel that different at all. And he was not a LLMD, just a general doctor.

There are some people that have lyme and don't know it. Not everyone, and I can only speak from personal experience. I was the biggest disbeliever in lyme there was. I have a medical background and I thought the lyme tests were accurate. I found out they are not.

My personal experience has been that my POTS symptoms have gotten better with treatment. I can't tell you how good it is to not get dizzy when I stand like I used to anymore. I can't tell you how good it feels to not have my heart rate go sky high when I stand or after just eating a meal. So any risk I take with antibiotics is worth it to me. Everyone has to make their own decision.

To find out what is causing a person's symptoms no matter what the cause is is such a relief. Not everyone has lyme, but a trial course of antibiotics can sometimes tell you what you need to know.

To find out what is truly causing your symptoms, whether it be lyme, or anything else is the important thing.

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Thanks Malosp,

I'm glad you improved on antibiotics. I'm really hoping to see some changes when I try them too :( After reading ariella's article, which stated that many of the "sickest of the sick" don't have postive tests because the body's given up fighting, that made me realize that perhaps I really do have lyme...or some pathogen running amok.

I've made an appointment with my GP next week, and, of course, I'll keep everyone posted on how the trial goes!

Hugs,

Lauren

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Lauren,

I have been trying to keep up as much as possible on your posts and have so much I would like to try to write...but I have been down all week with what I *think* is a stomach flu or something. I've been off line and you are on my mind so much....

Your story and dilemna is sooooo much like mine.

Are you willing to travel to an LLMD???? Email me and let me know what you think of that....

I agree with most everything others have said. My only concern is that it is hard to have a PCP do the abx when they don't really know dosing or anything like that. As you know, my first go around was a bit traumatic!

I really had borderline and inconclusive testing...and no memory of a tick bite, as you know...so please, please do not get discouraged by the negative test. Was it just through a regular lab?

I sense that you are feeling beaten down, frustrated and at your wit's end right now....please hold on my dear. I know so deeply how discouraging this path can be...and you feel like no doc is on your side and willing to help.

I'm a bit nervous about you doing abx through your PCP, but I do completely agree that they are worth a shot....

Can you get in to see an LLMD that will give you a full work-up? I was soooo appalled by the 5 minute appt. you had with the other guy. Lyme is too complicated to diagnose that quickly. And, it is doctors like that who give Lyme a bad name and also probably over-diagnose.

I'm sorry I have not been able to be there for you and others more lately, I'm just a wet dishrag right now.

BUT I DO want to tell you that right before this flu bug, I was actually for the first time in 8 years, brimming with hope--I have started to see the littlest of 'windows'--the littlest improvements that are keeping me going on this treatment. I hold on to the teeniest of changes.

Like, I have been able to watch some TV! And I LOVE U.S. Open Tennis! :) I've started to be able to tolerate my massages and not get deathly sick from them. I've had a setback this week and all, but I am seeing little changes. It will be a long, long road, but I am feeling hope and I wanted to pass that your way...

Patience is the most difficult challenge of all, isn't it?

Hugs,

Emily

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Thanks so much for your support, Emily! I'm sorry to hear you have a bug, but so happy to hear you've been improving slightly!!!! And I just know more improvement is yet to come.

It's funny, when I got the "indeterminate" results I immediately thought of you and your struggle with lyme, because I remembered you had two positive bands as well.

My GP does have experience treating lyme, and she's very well researched so I'd like to give it a go with her first. However, if I start to herx really bad and she feels out of her depth, then I will go to any LLMD who's willing to take on my case.

However, I've been doing much better lately since the cooler weather started and I started mestinon, so I feel like I'm stable enough to handle whatever lyme throws at me...I guess you could say I'm mentally preparing to go to war.

The lyme test was through stonybrook labs, which I've heard are very good, them and ingenex (sp?). I will be interested to take the test again after a month on antibiotics and see what happens. Hopefully I'll have a positively positive test then and I can put any questions I have about the diagnosis to bed.

And I agree with you that patience is the most difficult thing to keep...but one of my favorite poets said "hope is the hardest love we carry"...and I know both of us are holding onto the hope we have with all of our strength. I hope that you and I both will one day be able to dance on the grave of our symptoms.

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Oh Lauren, I LOVE that quote! What poet said that! I just might have to use it on my blog (with your blessing, of course!).

Anyways, I probably have been so out of it and missed that your PCP is pretty on the ball about Lyme, so it sounds like a good plan...sorry I was sort of thinking of the typical clueless PCP (MINE!).

A month might not be long enough to notice anything either way (except maybe a herx?)...a good 3 months is what I understadn to be an 'empirical trial' of abx for Lyme...

It may also take longer for you to get a true positive, or you may never get one. But, if you start to feel better, it's saying something. If you herx, it's saying something too. Ya know?

Blessings on this new journey! I hope it will bring you closer to the answers you are searching for.

Emily

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What constitutes a LLMD???

Curious minds want to know!

Thanks,

Goldie

Hi Goldie

A LLMD just means a doctor is lyme literate. It is not a credential that they can obtain. It is a label given to doctors who will treat patient's for lyme based on their symptoms and not just by lab tests. It is label given to a doctor that is known to be very knowledgeable about lyme.

For instance, many doctors will not even treat a patient for lyme, if their lyme test comes back negative, or they don't have the classic bullseye rash. But Lyme Literate doctors through experience, have come to realize a patient can still have lyme, and not present with the typical symptoms.

The lucky people are the ones who see the tick bite and get the rash. If you aren't that lucky, and you never see the rash or don't have one, then you may just think you have the flu, when you get the symptoms, and when the symptoms go away you forget about it. Unfortunately, Lyme is such an insidious disease that it can hide in the body for months or years, and not come out until some stress or surgery brings it out. Thus, no antibodies to lyme any longer. And the symptoms can come out as dizziness, fast heart rate, numbness, exercise intolerance, increased floaters in the eyes, extreme muscle aches and brain fog. Which are the same symptoms many diseases have.

Some day, it will change where all doctors will realize that a person can have lyme without the classic presentation, but until then, us poor patient's are put in the middle and have to decide who to believe.

I am just lucky, that I have some medical background, and was able to figure it out on my own. And I was lucky that I found a general doctor that had a personal experience with lyme and was willing to put me on a trial course of antibiotics. I knew the first day when I took the antibiotic that I had lyme. It was defintely killing something. Antibiotics only work on bacteria not viruses. I then knew without a doubt . I guess, even though he doesn't advertise as such, that general doctor could be called a lyme literate doctor.

Some believe that LLMD's overdiagnose. That wasn't my personal experience, but I guess there can be bad lyme literate doctors just like bad other doctors.

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Of course you can use that quote Emily! It's from a Jane Hirshfield poem. I've transcribed the poem below so you can read it yourself. Oh, and the poem is from her book, "The Lives of the Heart".

Hope and Love

All winter

the blue heron

slept among the horses.

I do not know

the custom of herons,

do not know

if solitary habit

is their way,

or if he listened for

some missing one--

not knowing even

that was what he did--

in the blowing

sounds of the dark.

I know that

hope is the hardest

love we carry:

He slept

with with his long neck

folded, like a letter

put away.

Thanks for the tip about the three month trial! I really hope my doctor's okay with doing it, although if she isn't I'm determined to find someone who is. Of course, I'll let everyone know how it goes!

Hugs,

Lauren

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