Lumbar Puncture for LYME?

Question

Hello, 

I'm a chronic pain patient that was diagnosed with FMS, MPS, and DDD (nech and back). Recently, I tested at a 4.89 on the ELIAS screening test for LYME. Due to my medical history, my PM doctor referred me to an ID doctor who wants to run a lumbar puncture to assess the central nervous system. I read that this is an uncommon procedure for LYME testing. 

So my questions are -- 
1) why are the conducting this test? 
2) what else could be wrong (i.e., what causes a "false positive"?) 

My doctor suspects possible Lupus, but what other diseases trigger a false positive? 

Also, could my FMS actually be cronic LYME? 

Any help with these questions would be greatly appreciated.

JackieCalifornia · Accepted Answer

Hi Goldie23

You are asking good questions -- 

I'm guessing FMS means fibromyalgia?  MPS and DDD I don't know.  Lyme patients are sometimes told they have fibromyalgia, a disease syndrome with no known cause or cure.  We do know however that Lyme is caused by a specific bacterium and is treatable.

ID docs are in a tough spot:  the heads of the big ID doc organization, Infectious Disease Society of America (IDSA), were the discoverers of Lyme disease, but they have failed over the years to update their views on Lyme as more and more has become known about the bug that causes it and what diagnostic approaches and what treatments (and for how long) are most effective.  And it's worse than that:  many if not most ID docs have a chip on their shoulders about the more forward-thinking docs who follow the approach of ILADS (International Lyme and Associated Diseases Society), website ILADS [dot] org.  Some ID docs are open-minded, but mine weren't.

I have read (as you have also) that lumbar puncture is not particularly diagnostic of Lyme, because the Lyme bacteria are not always present in sufficient numbers to be countable.  But you can be screamin' sick nevertheless.  The use of lumbar puncture is again part of the outdated approach used by IDSA.

As to false positive on an ELISA test, none of the tests are awfully good.  ELISA and Western blot tests are often run together, because one has a high rate of false positives and the other has a high rate of false negatives, and the truth is supposed to be visible in the middle there somewhere. It's puzzling that your doc went straight from ELISA to a lumbar puncture; usually the second step is usually the Western blot.  For example:

The US government's CDC (Centers for Disease Control) website says this:

======================
          "Several forms of laboratory testing for Lyme disease are available, some of which have not been adequately validated. Most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but they are quite reliable for diagnosing later stages of disease.

          "CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.

          "1) The first step uses an ELISA or IFA test. These tests are designed to be very "sensitive," meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive.  If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended.  If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.

          "2) The second step uses an immunoblot such as a Western blot or striped blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons.  Sometimes two types of Western blot are performed, "IgM" and "IgG." Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive."
============================

It sounds like your docs have jumped over the Western blot and straight to a lumbar puncture, but from what I read the puncture is just not very accurate.

However:

There is another test, called PCR testing, that doesn't look for antibodies in the blood, but instead for bits of Lyme bacteria DNA.  That test is offered through IGeneX labs in California, but nonLyme docs don't trust it, for reasons I have never heard stated.  Lyme docs often use it, but the CDC does not like the test.  Why, I don't know.  But the part of the CDC statement above ("Several forms of laboratory testing for Lyme disease are available, **some of which have not been adequately validated** ") is referring to PCR testing.  The CDC and IDSA are cut from the same cloth.

Lupus is also another fairly usual misdiagnosis for Lyme.  And yes, your FMS could be Lyme.  You wouldn't be the first.

My best advise would be to find a Lyme specialist, what we call the unofficial term of a "Lyme Literate MD" or LLMD.  That means somebody with an open mind.  Your profile says you are in Pennsylvania -- depends on what part of PA whether you have LLMDs nearby.

Here are some websites with information and possible referral services:

ilads [dot] org 
lymediseaseassociation [dot] org 
truthaboutlymedisease [dot] com 
lymenet [dot] org 
chroniclymedisease [dot] com 
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)

You can also search/google "Scranton LLMD" or whatever you are near.  Sometimes people end up driving a few hours to find an LLMD, but in my experience, it's worth it.

I think you are asking all the right questions, and if I were in your situation, I would keep looking for an LLMD for an evaluation.  When you find one, take copies of all your test results with you -- they might well be useful data.  

An LLMD would also take a careful history of your symptoms, because Lyme ticks also often carry other diseases that need different testing and different treatment.  NonLLMDs tend not to place much emphasis on this aspect, but it is real.

Let us know if we can help further ... and let us know how you do, okay?  Best wishes --

JackieCalifornia · Answer

I just googled 'philadelphia lyme disease specialist' and got a bunch of hits that might lead you to someone.

If you are not taking magnesium supplements, you might try it.  I have read that Lyme bacteria use up magnesium (Mg)  in their reproductive process, but the result of low magnesium doesn't show up on blood tests, because most Mg is stored inside your cells, not in the blood stream.  As the Mg is used up by the Lyme in your bloodstream, the cellular stores get depleted keeping the bloodstream at the appropriate level, but eventually the cells run out -- result can be muscle cramps, irregular heart beat, and feeling lousy.  I learned all this the hard way.  Now I take Mg supplements -- I was told that any kind ending in "-ate" is easily absorbed by the body ... for example, Mg malate, etc.  It made a big big different for me, and also helps mood.  You know how babies get all floppy after a bottle?  Partly it's a full stomach of warm milk, but it's also the magnesium.

Take care --

Goldie23 · Answer

Thank you so much for all of the information!!

Yes, FMS is fibromyalgia. MPS is myofascial pain syndrome and DDD refers to degenerative disc disease.

I, too, thought that a lumbar puncture was a drastic move before conducting the Western blot. That's why I wonder if they are suspicious of something else. My Vitamin D level also tested low (a 12). I've seen on this board that a lot of Lyme sufferers also have this problem. 

I live outside of Philadelphia, so I'll do the net searches you suggested and see who I can find. If anyone knows of a good ID doc in this area, please let me know.

Thanks again for your help. I'll keep you posted.

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