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» LymeNet Flash » Questions and Discussion » Medical Questions » What tests needed to diagnose/rule out diseminated lyme disease?

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Author Topic: What tests needed to diagnose/rule out diseminated lyme disease?
jessica_2964
Junior Member
Member # 33747

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Hi, I'm female, 24, and I have never been diagnosed with lyme disease and never noticed any bull's eye rash, (which I know is not always present anyway), but I'm wondering what tests need to be done to confidently rule lyme disease out. I've had some wierd neurological symptoms starting about three years ago - a really hightened startle reflex, numbness/tingling in my fingers and toes on and off, a painful burning sensation on patches of skin when it is rubbed or touched (this comes and goes and travels around my body), shakiness and ratchety muscle movements, and frequent musle twitches and vibrating muscles... all of these are relatively mild and non-disabling right now but concerning becasue they were new and seem to be increasing. I also often have pain in my knees, the ball of my foot, and my back though not severe enough to stop me from doing my normal activities. I also have started getting heart palpitations recently, and have been diagnosed with IBS and GERD in the past couple years. Also I get a pink lacy rash on my feet kind of frequently - definately not bull's eye shaped though and it goes away after a few hours. I am still trying to figure out the neurological symptoms and recently saw a neurologist. She wanted to rule out lyme disease since I live in Massachusetts (my neighbor got lyme disease a couple years ago) and am outside a lot and she ordered an ELISA test which came out negative. Is this a pretty good indication that I do not have lyme disease? Are there any other tests needed to rule out disseminated lyme disease? Is the ELISA test accurate years into a lyme disease infection? I asked my doctor this and she said yes, if the test is negative it's almost certain that I don't have it. I just wanted to check though. (I've also had an MRI to check for MS - negative. The neurologist thinks now that it's anxiety - who knows maybe I'm just a hypochondriac!)
Thanks for your help,
- Jessica

Posts: 2 | From Massachusetts | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Razzle
Frequent Contributor (1K+ posts)
Member # 30398

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Lyme must be diagnosed clinically and cannot be ruled out by any test - the tests available today are not accurate enough for this. So your negative ELISA may be a false negative. I'd recommend that you post in the "Seeking a Doctor" part of this forum to find a Lyme-Literate physician who can properly evaluate you for Lyme.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

Posts: 4165 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
bcb1200
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Jessica..I'm not a doctor but your symptoms sound like lyme and Bartonella to me.

I am also from Massachusetts and will send you a Private Message and give you the name of my LLMD (Lyme Literate MD.) My old PCP was telling me the same thing as yours is. That the test is accurate (my ELISA was negative), that I have anxiety, etc.

My PCP was WRONG! I had lyme, Bartonella and Babesia. 15 months later (I'm still treating), I'm 95+% most days and the majority of my symptoms are GONE. I only have a few very mild symptoms left.

In terms of tips...here is what I recommend:

-Get a Western Blot test from Igenex (www.igenex.com) You need the Lyme IgG and IgM Western Blot. My LLMD (Lyme Literate MD) will use Igenex.

-Download and read Dr. Burrascano's treatment guideline, widely regarded as "the Bible" of treating lyme. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

-Watch the 2009 Oscar-nominated documentary film on Lyme called "Under Our Skin" available on Netflix, for free on Hulu, on iTunes and on Demand from most cable systems. This explains why lyme is so controversial and why most doctors can't diagnose it.

You are not a hypochondriac (I thought I was too), you do not have anxiety...well you may have anxiety (it is a symptom of lyme and Bartonella), but the anxiety is not the ROOT of your issues.

Get to my LLMD!

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3110 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Please get to a LLMD a.s.a.p. Non Lyme-literate doctors are clueless about this horrible disease and its complex treatment.

The ELISA test is unreliable (only about 50% or less, from what I've read). You should be tested through IGENEX Labs and get the Western Blot #188 & 189 tests run.

Of course you will be told "it's all in your head", because these ducks can't explain it any other way. That's what my son was told, but then was diagnosed with Lyme as well as Babesiosis and Bartonellosis (additional infections which come with Lyme).

Post in "Seeking a Doctor" to ask for Massachusetts LLMD referrals. May I suggest you break up your posts into 2-3 sentence paragraphs, as some on Lymenet cannot read huge blocks of text due to neurological problems from Lyme. Thanks.

Posts: 8758 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
TF
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It really sounds like lyme disease to me. I had the symptom of moving around patches of what felt like sunburned skin. I especially felt this at night in bed and especially where the skin was touching the bed.

All of these "false sensations" are called neuropathies. Lyme disease is essentially a disease of the nervous system, so it stands to reason that it will cause many such neuropathies.

As everyone has stated, regular doctors trust the Elisa, but doctors who specialize in lyme disease know that it is untrustworthy.

Get to a lyme doctor and try some lyme treatment (antibiotics). If you react to the treatment, that is the proof.

I went undiagnosed for 10 years, gradually accumulating more and more symptoms until a doctor finally thought of lyme disease. Over those years, every doctor offered me antidepressants. It is pathetic.

Your story sounds just like hundreds of others told on this forum.

Here are some quotes from Burrascano's Guidelines for you to consider:

"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4)

"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms." (page 7)

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Also, look at the symptom list on pages 9-10 and see how many you have named. You have named quite a few.

The sooner you begin lyme treatment, the better for you as the disease will just continue to progress if left untreated.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
tickssuck
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From what I've read the ELISA test is not worth a hoot. My original test was an ELISA, It was .01 away from a positive reading....I was then placed in a box of "already tested for LD and it's definitely not that."

2 more years of neurological suffering, until somebody paid attention and ran a Western Blot which was positive for Lyme and all co-infections. As stated above, even then, it should be a clinical diagnosis as the WB is not reliable.

Don't listen to your doctor and the negative result, you're wasting precious time. If he/she is relying on the ELISA they are not educated on Lyme disease. Find a reputable LLMD and get the proper clinical evaluation and testing done!

I am no doctor and, of course, don't know the cause of your ills (though very suspicious for LD). However, I have every single symptom you mentioned, and then some. Good luck. TS

Posts: 566 | From West Coast | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Breaking this up so all will be able to read it -----
quote:
Originally posted by jessica_2964:


Hi, I'm female, 24, and I have never been diagnosed with lyme disease and never noticed any bull's eye rash, (which I know is not always present anyway), but I'm wondering what tests need to be done to confidently rule lyme disease out.

I've had some wierd neurological symptoms starting about three years ago - a really hightened startle reflex, numbness/tingling in my fingers and toes on and off, a painful burning sensation on patches of skin when it is rubbed or touched (this comes and goes and travels around my body),

shakiness and ratchety muscle movements, and frequent musle twitches and vibrating muscles... all of these are relatively mild and non-disabling right now but concerning becasue they were new and seem to be increasing.

I also often have pain in my knees, the ball of my foot, and my back though not severe enough to stop me from doing my normal activities.

I also have started getting heart palpitations recently, and have been diagnosed with IBS and GERD in the past couple years. Also I get a pink lacy rash on my feet kind of frequently - definately not bull's eye shaped though and it goes away after a few hours.

I am still trying to figure out the neurological symptoms and recently saw a neurologist. She wanted to rule out lyme disease since I live in Massachusetts (my neighbor got lyme disease a couple years ago)

and am outside a lot and she ordered an ELISA test which came out negative. Is this a pretty good indication that I do not have lyme disease? Are there any other tests needed to rule out disseminated lyme disease?

Is the ELISA test accurate years into a lyme disease infection? I asked my doctor this and she said yes, if the test is negative it's almost certain that I don't have it.

I just wanted to check though. (I've also had an MRI to check for MS - negative. The neurologist thinks now that it's anxiety - who knows maybe I'm just a hypochondriac!)
Thanks for your help,
- Jessica [/QB]



--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94879 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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I would suggest getting a doctor to sign off on a Western Blot thru Igenex Labs.

www.igenex.com

Test #188 and 189

I agree.. the ELISA is unreliable.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94879 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
missing
LymeNet Contributor
Member # 22437

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My doctor's ignored my symptoms, which were all the same as yours.

They told me that I was depressed.

Now, that skin pain that you have, for me it got so bad that I would scream all day.

I have not had a pain free day for 4 years, since that rash and the tick bite.

Do whatever you can to go to see a LLMD! Please. I suffer everyday!

This disease is near bankrupting us, because we later realized that my husband is sick and my daughter is sick as well.

--------------------
I am not a doctor. I have no clue.

Posts: 606 | From somewhere out there | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
   

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