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314892 tn?1264623903

Negative Lyme tests

Has anyone had negative ELISA and all bands negative (per CDC criteria) on the Western blot repeatedly and then had other bands positive by Igenex (or other lab)?

I am a microbiologist and have read and understand all the issues regarding the testing.

My endocrinlogist believes I may have sero-negative Neurologic Lyme (14 years long) due to dizziness, muscle spasms and some other neuro-type symptoms. I also have hypothyroidism, which explains some of the symptoms. It is hard to know which is which. I am still in the process of getting the thyroid levels under control.

I also had a bulls eye rash in 1994 that I was clueless about and no doctor ever saw it. The vertigo began 4 months later.

Thanks!
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314892 tn?1264623903
Thanks.

I have read so much, I feel like an expert!

I need to look into the steroid thing. When they still thought I had Meneire's Disease in 2006, I was put on 2 rounds of steroids, not to mention a few rounds in 2004/2005 before and after my sinus surgery. And actually a year before that, I was on 2 rounds (5 days each) for an allergic reaction to the sun. Yikes!!

ILADS in in Bethesda, MD. I am in MD near Washington DC. My endo is in DC. He said he knows people to deal with this..........
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Avatar universal
It does sound like you have a good endo doc. I would think about any taking any type of steroid...this bacteria LOVES steroids, it's their food. Steroids are used with lyme only if need be, but typically lyme docs wean us off steroids.
It seems as if you did in fact have a reaction to abx, a herxheimer. Lyme docs look for this reaction when we begin antibiotics.
Read all you can and compare your symptoms with lyme sypmtoms. I'll bet you can check off a few. At this point I wouldn't be too concerned with not having a picture of your rash. A bulls eye rash is a sure sign that you have lyme disease. Ticks=lyme. Don't overlook all the co-infections that go along with lyme disease. Check out lymenet.org, there's a great Newbie Link under Medical Questions. It'll make your head spin, but join the club. We all go through the learning curve. You unlike so many of us should get through the maze of info due to your background. Keep reading, and the best to you.
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314892 tn?1264623903
When you mention the Herxheimer rxn, it makes me think of when I took Biaxin for pansinusitus (infection in all sinuses). This was before I has sinus surgey. They wanted to see if they could blast it out w/o surgery. lol

I was supposed to take the Biaxin for 3 weeks. Well, exactly 2 weeks into the rx, I had really bad tachycardia that woke me up. My HR was 120 and I felt bad. I stopped the med and the tachy went away. We figured it was just a drug rxn. But 2 weeks into it?
Sems a bit strange.

Then, last summer I took doxycycline for another sinus infection, After I finished the rx, I had about 2 good days, without any vertigo. Then the vertigo crept back in. The neuro I saw at the time said if I felt better DURING the time I was on the rx, it meant something and he would rx me more doxy. He said since I felt better AFTER I finished it, it wasn't relevant. WHAT??  (Top Doc, too. And a friend of my current wonderful endo)

Then there was a time that for a few years, I was on antibiotics off and on for many, bad sinus infections. Funny, I never had a vertigo attack during those years. Maybe I am just making it all fit to explain it, but I DID have that bulls eye rash.........

Thanks for sharing your hints and suggestions. It really helps.

My BP is ok, it's just that my HR increases a lot when I stand and even sit. The endo is thinking to try me on Fludrocortisone, but I worry it may puff me up and make my BP high, since I have normal BP now.
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Avatar universal
Sounds like you have a good doctor.  If you take the treatment It does take a while to notice a difference, except that people with lyme usually have a worsening of symptoms (herxheimer reaction) when starting treatment.  It was about 4 months before I noticed improvement.  I did have a significant worsening of symptoms.  I also have the POTS.  I stand up and my blood pressure is 60/40.  I feel it's from the damage to my CNS.  I deal with it by getting up slowly.  I can tolerate this better than some of the other symptoms I have or have had.
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314892 tn?1264623903
Thanks everyone!

I have just read Cure Unknown and several other books on Lyme.

I work for Quest Diagnostics in the Microbiology lab and always just relied on the tests we run and the reporting criteria.

Until now I didn't know that the CDC requires these labs to only report certain bands. What a crock!

My endocrinologist believes I do have CNS Lyme even with negative tests. He may go a head and treat w/o further testing. He is big on clinical diagnosis and doesn't like to order a million tests just to "get a result on paper" as he told me once.

I was hoping all of my symptoms were thyroid related, but he thinks not. There is even discussion that I have Autonomic Nervous System Dysfunction (POTS). I have read that Lyme can also be implicated here. My ENT thought I had MS after the treatment for Meneire's Disease wasn't helping. I have trouble seeing in the dark and fell down the steps. he then ordered an MRI (one of many over the years) to r/o MS. (I later learned)

Now I read that Meneire's is linked to Lyme sometimes!

I just really wish I had a picture of my bulls eye rash.

I think I repeated myself-sorry!

The first Lyme test I had was an ELISA in 1997, 3 years late. Of course it was negative, because it is not a great test.
I had a WB for the 1st time in 2005, due to the muscle twitches and fatigue. All negative.
Last year, my neuro ordered another ELISA- negative again!

Now my endo says I may have Lyme and I tell him all my tests are negative. he replied very matter of factly "It doesn't matter that they are negative." Wow. I love him. He could just send me on my way and say that my thyroid is stable. He wants to help me. I feel like he is my last hope and I plan to tell him next week.

Thanks for the support!
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Avatar universal
Hi and glad to hear you're pursuing "testing". I had a negative IGeneX test as well, but I did have lyme bands positive. 30, 34, 41 IND.

Testing for lyme is unreliable, but IGenex does test for all the lyme bands. It's because we still don't have great testing that lyme needs to be a Clinical diagnosis. Lyme docs test AND ask about symptoms to come to a diagnosis. Funny, but some of the "sickest" people only have a few bands positive.

Here's a great website: ILADS.org
This is a website that comprises of lyme docs and when you compare their thinking to IDSA docs there's a stark contrast.

Personally, I took my health into my hands and after 20 yrs, and never having a bulls eye rash, but diagnosed with MS I am on my way to health. It took me a long time to finally look at lyme disease, but for me it makes so much sense. I no longer believe in Auto Immune disease, I am convinced our immune systems are overwhelmed by this bacteria, hense the "negative" testing. Gone are my days of "not" overstimulating my immune system...I do all I can to help get it going!

The best to you,
read all you can about this politically charged disease.
tory
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362692 tn?1248639193
I recommend that you read the "cure unknown" and it will explain why the WB is negative at most labs and not at Igenex. This an excellent book!! This book has helped me understand all aspects of lyme. I am CDC negative  on a traditional lab test. I had one band (23) on the igm. I never persued Igenex testing because I was not denied treatment with only one band.

Page 200

"The Steer team had used just a single strain of B. burgdorferi to derivie the standard, and that strain came from Europe! Was this really the best match for diagnosis of the 100 U.S. strains, including some eliciting alternate antibodies not on Steer's list?

Page 206

" but others explained that IGeneX tested for maore strains of Borrelia and reported more bands, including 14 seperate regions of the spirochete protein coat and markers indicating Ops A and OspB."

Best of luck

Rebeccah
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Avatar universal
I too, tested negative for years on the standard ELISA and Western Blot.  Only when I was recently tested by IGENEX, did I get a positive test.  I have had symptoms for 15 years, many like yours.  I am now on 3 antibiotics: Plaquenil, Biaxin, and Pennicillin, plus probiotocs (very important).  Good luck to you.  -Paul
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314892 tn?1264623903
I will be looking at ordering both WB and the whole blood PCR. I have a price sheet included in the kit they sent me.

Thanks so much for the info!

Glad you are feeling better.
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Avatar universal
I used creams and powders too but nothing worked.  I thought it was a fungus or something.  I had 3 bullseyes in a row.  Mine did not itch or hurt or anything.

I did see a LLMD.  I took a cephalosporin in 1993.  This time I have been on Biaxin, Zithromax. Doxycycline.  Not all at the same time though.  I am much better.

A lyme WB IGG/IGM through Igenex was about $200 when I had it done in 2006.
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314892 tn?1264623903
Wow. Thanks so much for sharing your story.

Did you take oral antibiotics? Which one(s)?

I did the same thing with my rash. It was huge and showed up after a camping trip to North Carolina (Outer Banks). We all just kept looking at it and saying what is this. I have a snapshot in my mind, but not in real life. If only I knew!

The rash was a big as my entire right calf. Clear in the center and an inch or so thick red, warm slightly swollen ring. I used creams and nothing worked.

I have ordered the Igenex kit and will take it to my endo next week and see what he says. He will probably say we don't need a positive test to treat, but I want something in writing! Even if it is hundreds of dollars. I have spent so many thousands over the last 14 years on wrong diagnoses that a few hundred is a drop in the bucket.

Since 1994 when it started, I had relapses of the vertigo in 1997 and again in 2006. This last episode has lasted for almost 2 1/2 years now. The vertigo seemed nearly gone when I got my thyroid levels almost right and then worsened when the numbers increased. I want to believe this is only thyroid, but my endo thinks not. I will ask him if being hypo and having Lyme interact with each other somehow. It all involves the immune system after all.

Did you see a LLMD?
Helpful - 0
Avatar universal
Your story is exactly like mine.  I had 3 bullseye rashes in 1992.  No doctor ever saw it.  I remember they were the weirdest looking rashes I ever saw, circular rings with perfectly clear centers.  My husband and I would look at them every day and wonder what they were.  They were present for several weeks. Anyway, I got very sick shortly thereafter.  I had severe eye pain, floaters, fevers, joint pain and swelling,vomiting diarrhea, twitching all over, pain all over, neuro symptoms..numbness, tingling, weakness, leg dragging, constant ringing in ears, blurred vision, brain fog, horrible rashes over and over again and more.  The first doctor I saw thought it was MS.  All my tests came back normal though.  Long story short.  I finally started treatment about 15 months after the rash.  After about 4 months of treatment I started getting better.  I stopped taking the antibiotics because I got tired of driving out of state for treatment.  It took me about 5 years to recover.

I was about 90% for about 7 years when it all hit again after I had surgery.  Again, I improved  considerably from antibiotics.

I have never tested positive on a lyme test.  My WB from a standard lab showed no bands.  My WB from Igenex showed 30+, 39 IND, 41 IND.
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