Need Help: Lyme Diagnostic Questions (save me from a biopsy)

[MandyMS29]

Hi I was hoping to get some input from Lyme patients, or anyone who may know about the diagnostic side of Lyme. I have been drastically sick for six months, with lyme-like symtoms, I have a 38mm white matter lesion on my MRI and oligoclonal bands in my spinal fluid. I test negative for lyme (Elisa and Western Blot), but my mom is convinced I have it and doctors have other ideas (MS, Lymphoma, etc). My treatment plan and pending biopsy will be based on what I decide about lyme, and I just don't have enough information to decide whether or not I should pull Lyme off the table.

I have a few questions that I can't find answers to. Any input would be greatly appreciated and might help me make the right decision here.

My questions are:

1. What are the MRI characteristics of lyme lesions? From my research, it seems that they are similar to a demyelination, and are usually small, T2 hyperintense white matter lesions. Does anyone have anything to add to that? Has anyone ever heard of a large lyme lesion? Mine is 38mm, which I assume could potentially rule out lyme, but I can't find anything online about lyme lesion sizes or MRI studies.

2. Do lyme lesions show up on CT? Mine do not.

3. I know that oligoclonal bands can show up in the CSF for lyme patients, but do Oligoclonal bands also show up in the blood? I have O-bands in my CSF, but not in my blood.

4. Do lyme lesions enhance/glow with MRI contrast? If so, how long do they usually enhance for? (mine has been enhancing for almost six months)

5. Does anyone know if a biospy would definitively prove or disprove lyme?

6. If someone has neuroborreliosis (neuro lyme) with white matter lesions, what are the chances that lyme wouldn't show up on a spinal tap? (my tap was clean for lyme, but i hear that CSF rarely produces a positive lyme test)

7. Are there any other diagnostic tests that would differentiate between Lyme, MS, and Lymphoma? (in the absence of a positive Elisa or Western Blot, etc?)


We ran the lyme tests in september, november, and again in March. The final ones were sent to Igenex. All negative.

Any input on even one of these questions would be great. If someone has lyme with brain lesions, I would love to hear about the diagnostics that were done, and if you don't mind sharing, the results.

Thanks in advance for any help!

Mandy

[JackieCalifornia]

Found it!  Here is the initial message from the guy in Arizona.  If you search in the box above for rburrillo it will take you to a link for his email, I think .... there is a way to do it but I don't ahve time right now ... there are more posts from him.  I don't recall where he ended up seeing an LLMD, but it's a start.  Gotta run.  Later.
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By rburrillo | Jul 20, 2011
18 Comments
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I have been grappling with a slew of symptoms for almost four months now, and taken together they all point toward Lyme disease (even a doctor at the ER thought so). They include: severe "brain fog," dizziness, joint and muscle pain, pronounced fatigue, eye strain and difficulty focusing, confusion, shortness of breath, pressure in head, flashing lights when my eyes are closed, and upset stomach. I'm an archaeologist and I spend a lot of time outdoors in Arizona, Utah and Oregon so it's very probable for me to have been bitten by a tick, especially up in Oregon.

However, I live in the small town of Page, AZ where there is only one medical center, and when I prompted them in the Lyme direction they tested me for the Lyme antibodies and said I don't have it and never did.

What should I do? Is there another, more reliable test? Or is it more likely that I simply don't have it?

[JackieCalifornia]

I understand what you are saying, and would share your assessment of your kindly doc.

I just searched online:

arizona lyme

and got quite a few hits ... sometimes there are referral services, sometimes just a group of patients or one person who have been through the mill and are trying to help others (like us here), but they can have valuable leads to finding a nearby doc.

Also send a message to contact [at] ilads [dot] org and tell them where you are and can get to.  That's a referral service of ILADS, the main voluntary Lyme doc group based in NYC.

There was also a fellow posting here some months ago who (IIRC) found an LLMD in Arizona ... don't have time right now to search the site for his screen name, but will tonight.  The poster is an outdoorsy guy who got Lyme but couldn't get a proper diagnosis, and he found a doc to treat him.

It takes devious methods to locate an LLMD, but it's worth it.  Hang in there.  And give your mom a hug for me.  :)  

[MandyMS29]

Oh, and someone asked what would be biopsied....the biopsy would be of the 38mm lesion in my brain.

[MandyMS29]

Thanks so much guys! its been a rough day so didn't get a chance to reply to your earlier posts, but I will. Just wanted to chime in and say that I have had steroids...three times. And they make me horribly sick. That's the reason my mom first started researching lyme.

As for an LLMD, sadly, I am in Arizona, and I don't know if that exists here. I haven't found one. I have a great, open minded infectious disease doc, but he is the first to admit that he knows very little about lyme. He's been researching, but even he suggested I find an llmd.

My primary doc is chief of the multiple sclerosis division at barrows neurology, which is really lucky for me! He's been a great, proactive doctor, but I think he falls on the wrong side of the lyme debate. He thinks we are risking my treatment and possibly my life by suggesting lyme treatment first. He's become much less responsive since my mom talked to him about lyme and I'm honestly afraid I'm losing my best resource if this does turn out to be MS. Guess its a hard road for everybody, and I'm no exception. I have that consult with the neurosurgeon tomorrow and an MRI. I'll let you guys know how it goes. Thanks for all the input and advice, you've made alot of really great points. Hope you are doing well yourselves.

Mandy

[JackieCalifornia]

Ricobord touches on an important point:  An ignorant doc who doesn't recognize Lyme or even suspect it could prescribe steroid-type medication (under many different names) to suppress the immune system.  This is done for multiple sclerosis, because it is said to be an auto-immune disease in which your immune system gets confused and begins to attack you own healthy cells.  Therefore suppressing your immune system should stop the damage being done to your nerves.

Docs who don't understand or believe in Lyme, however, may diagnose someone with MS-like symptoms as having MS and want to try steroids to see if it helps, or there are also docs who believe that continued Lyme symptoms after a short course of antibiotics means your immune system just *thinks* you still have Lyme disease and is wrongly attacking your healthy cells.  This is called 'postLyme syndrome'.

The argument against this point of view is that maybe, just MAYBE, the Lyme isn't cured yet after a couple weeks of antibiotics, and you still have Lyme.  There are docs who will not even consider this as a possibility, and there are many of them, because this is the point of view taken by the IDSA, Infectious Disease Society of America, that holds firmly to the notion that Lyme is hard to get and easy to cure.

I would get a second opinion from an LLMD before taking any steroids, but I'm not medically trained.  Also not very trusting of some docs.

fwiw.  Take care!

[Ricobord]

I have heard of Lyme patients being incorrectly diagnosed with MS, only to get much sicker after being put on immunosuppressing drugs.  But the 3 stories that I have read all involved neuros who didn't properly follow the commonly accepted process for diagnosing MS.  It sounds like your docs are doing the right thing and monitoring you very closely.

There is a great deal of variability in MS patients, as there is in Lyme patients. Someone with MS-like Lyme just won't quite fit the MS profile. And usually there are other symptoms that often get dismissed as stress, like loss of appetite, GI tract issues, light sensitivity, tinnitus, twitching, poor sleep, depression, anxiety, et.al. Unfortunately, most docs who are MS aware probably aren't Lyme aware and don't know the difference.  I personally think that every patient where MS comes up as a possibility should also have a workup for Lyme.  

This must be a scary time for you! I hope you get resolution soon.  It sounds like you are getting good care and your Mom is advocating for you. If you do have that lesion biopsied, insist it also be tested for Lyme. I believe there's a PCR test available at many labs. (I don't know of ALSI in PA does a culture on tissue...they might.  They definitely do a culture on blood.)

Hang in there!