2099906 tn?1335139268

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

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!

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1763947 tn?1334055319
Mandy, I have Lyme with brain lesions. The person (radiologist) who read my MRI is suppose to well known in the Lyme world for knowing the difference between lesions that are Lyme or MS. Mine of course was Lyme in addition to the lesions it showed white matter damage which really freaked me out. . What are you going to have biopsied?  I didn't do the spinal test this time (did it 15 years ago when they didn't know what was wrong) My Western blot didnt show anything. The Igenx co-infection test showed positive for bartonella. Not sure if that really helped you but that was my experience. Is your doc an LLMD?
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Avatar universal

Welcome to MedHelp Lyme ... sorry you have reason to be here!

Your questions are excellent -- and continuing to ask and analyze and 'work the problem' (a phrase I learned from an engineer, meaning to go over and over the situation until you've got a game plan, and then keep re-evaluating it as time goes on) is what has to be done with Lyme, given its trickiness and the confused state of medicine when it comes to tickborne diseases generally and Lyme in particular.

The most important thing in diagnosing and treating Lyme is to have a doc who understands Lyme.  If you haven't discovered already, there is a serious split in the medical community about the seriousness of Lyme, its geographic spread, how to diagnose it, and how (and for how long) to treat it.  There is much nastiness in the medical community about Lyme, and we the patients are caught in the crossfire.

I personally went through 20+ MDs  before finally getting an accidental diagnosis by an MD affiliated with a top university medical center here in California ... out of desperation, the doc ran a Lyme test, which came back positive, but she gently dismissed the positive result, with the comment that 'You couldn't have Lyme.  I have patients with Lyme, and they are ... all ... near ... death.'  I took those test results and beat feet to a Lyme specialist, who diagnosed me with Lyme and a co-infection, babesiosis, and I got well.  (I do worry for that kindly doc's other patients who are 'near death.'  I still owe her a letter to give her a clue, like she'll listen to lil ole me.)  

That's the problem:  a split in the medical community like you will see in no other ailment.  It's not just a healthy scientific difference of opinion:  it's a grudge match that would do credit to professional wrestling.

We the patients refer to docs (of any specialty or none) who understand that there is much to know and still being discovered about Lyme and its diagnosis and treatment as LLMDs, patient slang for Lyme Literate MDs.  No Lyme doc calls him/herself an LLMD, it's just a handle we use among ourselves.

It sounds from your description of your journey so far that you are seeing a doc or docs who are not LLMDs.  LLMDs and nonLLMDs both can see rainbows in the sky, but nonLLMDs are blind when it comes to seeing the color of the rainbow that would be 'Lyme' green.  They just don't see it, don't understand it, and think anyone who can see it is either stupid or crooked.  These nonLLMDs are following medical orthodoxy, as pronounced by the IDSA, Infectious Disease Society of America, the main voluntary group for infectious disease (ID) docs.  Because of the specialization in medicine, docs look to these groups to give them rules of the road.  Makes sense usually, but the 'discoverers' of Lyme a few decades ago made their reps on their early impressions of Lyme, where it's found, how it manifests, and how to treat it, and they stubbornly refuse to see beyond those early impressions.  Hence the Lyme wars, because there is a dissident group of docs who often belong to ILADS, another voluntary group, International Lyme and Associated Diseases Society.  Their website is at ILADS [dot] org.  Go there, incl. Burrascano's treatment guidelines as a primer on Lyme.

From the tests you have had, it sounds like you are NOT seeing an LLMD.  

--MRIs are not particular diagnostic of Lyme.  Lyme does not cause the kind of 'lesions' seen in MS.  

--ELISA and Western blot tests are very poor indicators of Lyme, and are supposed to be general indicators, not the last word -- LLMDs will look at your history and symptoms AND at the test results; nonLLMDs will look at the test results, full stop.

--Spinal taps may (but not often) show evidence of Lyme infection, but Lyme bacteria often don't hang out in spinal fluid.

--An LLMD will use other tests besides Wblot and ELISA, such as tests by IGeneX labs, which look not for the immune system reaction to Lyme bacteria but look for bits of Lyme DNA -- i.e., direct rather than indirect evidence.  Go to the IGeneX website for a lot of meaty scientific information.

--Listen to your mom.  She's a wise lady.

To your specific questions:

"1.  What are the MRI characteristics of lyme lesions?"

Lyme doesn't do lesions like MS or other diseases nonLLMDs are used to.  LLMDs often use a SPECT scan, which indicates areas of  hypoperfusion (low blood flow) in the brain due to swelling.  MRIs are not particular diagnostic of Lyme.  See ILADS website.

"2. Do lyme lesions show up on CT?"

Not to my knowledge.

"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."

Lyme often does not show up in spinal fluid.  

"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)"

MRI is not particularly diagnostic of Lyme, but when the only tool you've got is a hammer, every problem looks like a nail.  NonLLMDs don't like SPECT scans.

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

What would be biopsied?  Blood test is usually used.

"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)"

You hear correctly.  Lyme very often is not present or detectable in spinal fluid.

"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?)"

SPECT scan; PCR testing through IGeneX.

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

Who read the tests?  If it was not an LLMD, they might not understand what they were reading.  As to Wblot and ELISA, the tests often show up negative a while after infection, because your immune system will stop reacting, assuming that the bacteria have all been killed as they would in any 'normal' bacterial infection.  An LLMD may give you a test run of antibiotics (abx) to 'stir up' your immune system and then retest.  'Normal' bacteria are usually vanquished by your immune system within a few weeks, and our immune systems are set up to deal with that kind of short time frame.  
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Avatar universal

However, Lyme (like TB and leprosy bacteria) reproduces very slowly, and it is when reproducing [dividing cell wall] that bacteria are most susceptible to immune system attack (and to antibiotics, which are after all a sort of outsourcing by your immune system) when dividing/reproducing, and after a couple of weeks, your immune system gives up making antibodies on the theory that the bacteria MUST be dead.  Problem is that non-IGeneX tests look for ANTIBODIES and not for direct evidence of infection.  An LLMD will sometimes give a test run of abx and then rerun the WBlot and ELISA tests to see what happens when the abx have stimulated the immune system to react and thus show up on the tests.

NonLLMDs don't like IGeneX and don't believe in it.

Bottom line is:  nonLLMDs can't see all the colors in the rainbow.  In your situation, I would find an LLMD pronto before doing anything else.  If you need a referral, send an email to contact [at] ilads [dot] org and/or tell us what geographic area you are in and we might have suggestions from personal experience.

Also, Lyme often (perhaps half the time) comes with other diseases carried by the same tick, but nonLLMDs often do not test for those.  The overlapping symptoms confuse the diagnostic picture, and it takes an LLMD to parse it all.  These other diseases often need separate kinds of treatment from Lyme (i.e., different antibiotics)..

But keep your skeptical hat on:  Lyme is a fast-developing area of medicine, and there are Lyme docs I wouldn't let treat my dog or put air in my car tires.  Keep your antennae out and you'll be fine.

You could also post here saying where you are geographically and someone may respond through PRIVATE MESSAGING on this website (i.e., not in the open) with suggestions.  In some states, any doc who follows the ILADS diag and treatment approach can have their medical licenses revoked.  That's happened in Texas, where there are no longer LLMDs to be found.  Welcome to the Lyme Inquisition.

So!  There's my piece on Lyme.  Let us know how we can help.  Best wishes to you -- and *don't give up* till you figure it out.  Rah!
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Avatar universal
PS  I highly recommend the book 'Cure Unknown' by Pamela Weintraub, a trained science journalist whose family all got Lyme.  She intersperses their experience with the science and and politics of Lyme.  Now in paperback.  The only thing I don't like is the title, unless she means that the cure for the willful blindness of the medical profession is the thing that needs curing.

I don't however care at all for the 'documentary' film called 'Under Our Skin', which I find alarmist and propagandistic ... not that it is not accurate in its way, but not particularly balanced imo.
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Avatar universal
Good for you in doing research and asking good questions! I know how frustrating this process can be.  I went through a similar process. You have lots of good info in the above comments.  I will add my 2 cents.

I have around 20 small, unenhanced lesions in the white matter of my brain thanks to my neurologic Lyme. My MS doc said they do not look like MS lesions, esp because they are not enhanced under contrast.  The size of your lesion and the fact that it is enhanced leans you more toward MS than Lyme.  But that's not necessarily definitive. I didn't have any O bands in either blood or CSF so I haven't researched them much. I have heard of other MS patients who are negative on both.

On your IGeneX tests, did you have ANY positive or indeterminate results on any Borrelia specific bands?   When I talked to my PA about testing, she said it's their sickest patients who test completely negative. Usually they have other things going on, like coinfections, mold, yeast, viruses, or toxins built up in their body, overwhelming the immune system. Once they identify and treat the other conditions, the immune system begins to function again and then the patients often test positive. It requires specialized knowledge to go through this process.

I had a LP and my Lyme test on it was negative.  The latest statistic I heard from an IlADS doc is that less than 10% of Lyme patients test positive in their CSF. It is only a meaningful result when it is positive.  I was also negative on an IFA screening blood test, but showed 2 Borrelia specific WB IgM bands.

Biopsies for Lyme are also only useful if they are positive.  A negative does not exclude Lyme, because there may not have been any spirochetes in the biopsied location. Also, all labs are not equal in quality and reliability.

Urine tests at IGeneX might be helpful.

You might also be interested in the new culture test by Advanced Laboratory Services  in PA.  Last I looked, the test was $595 and can be done in a week or two. I doubt insurance will cover it because it is new. It is supposedly highly accurate as they have perfected the process of growing Borrelia in vitro.  (Apparently it is difficult to culture and many other attempts have failed.) Here is a link to their website.  Just click on Testing.


Your doctor could ask your insurance if they'll agree to it, or you can just do it and then apply for reimbursement to see if you get anything back.  I would have done this out of pocket in a heartbeat if I had known about it.  I plan to do this test when my treatment is concluded.  They require you to be antibiotic free for a momth before the blood draw.

Do you have any symptoms that cannot be attributed to MS?  That was a big factor for me in pursuing Lyme.  Have you seen the Burrascano symptom checklist?  I was amazed to see that things I wrote off to aging or stress were actually symptoms. This might help you in deciding which path to follow.


I hope this is helpful!  I hope you get the right diagnosis soon.
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Avatar universal
Ricobord is much more tuned in to the MS possibilities than I am.

I went straight from 'there's nothing wrong with you' to 'you have Lyme and babesiosis', with no consideration of MS, so I have a blind spot there.

I have read that there is a lot of focus on MS possibilities by docs who are not Lyme literate, and that the recent dramatic increase in "MS" is really Lyme at work.  So I tend to be a doubter about MS, since it's a common default position by docs who aren't keen on Lyme.  They seem to get stuck on MS and not move on.
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2099906 tn?1335139268
Wow, you guys are amazing! Thank you so much for all of this information! I will go through it in detail and try to give a response tomorrow. But really, truly, thank you!

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Avatar universal
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!
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Avatar universal
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!
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2099906 tn?1335139268
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.

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2099906 tn?1335139268
Oh, and someone asked what would be biopsied....the biopsy would be of the 38mm lesion in my brain.
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Avatar universal
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.  :)  
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Avatar universal
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.

By rburrillo | Jul 20, 2011
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?
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Avatar universal
I had another question...has your doctor eliminated Lupus, Sjogren's, and Sarcoid yet?  I am assuming so given that he's now recommending a biopsy.

I found a paper that might be helpful for you.  It even shows other MRis that look somewhat like yours. Has your neuro mentioned a Tumefactive Demyelinating Lesion? This paper explains why such a lesion creates a diagnostic dilemma and why a biopsy is the next step.


What makes you a tricky case is that you have not improved with IV steroids as is expected with this condition.

I hope you get answers soon!
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Avatar universal
How urgent is the recommendation for the biopsy?  If it's not urgent, I'd be inclined (speaking for myself) to consult a Lyme doc and rule out Lyme.  But that's just me, and you know far more about your situation than I.

Wishing you the best --

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Avatar universal
It seems I couldn't copy a paragraph from a website using my iPad, but I can with a good old fashion desktop and mouse!

On this page, I found the following paragraph in an article in the American Journal of Neuroradiology


Encephalomyelitis is a very rare complication of borreliosis, with a few reports of progressive and severe courses of the disease.47–51 In most cases of encephalomyelitis, MR imaging is very helpful in assessing the presence of rare tumefactive white matter lesions that may mimic a neoplastic process.47,48,51 Tumefactive lesion biopsies are characterized by microgliosis and spirochetes morphologically compatible with B burgdorferi yet paradoxically without an inflammatory infiltrate.48,52–54 Very rarely, MR imaging has documented reversal of LNB encephalitis subsequent to antibiotic management.49,55 The imaging resolution, however, lagged years behind the rapid clinical response to intravenous antibiotics.

While Tumefactive Demyelinating Lesions are rare, it looks like the primary causes are MS and acute disseminated encephalomyelitis (inflammation of the brain).  Lyme Disease is a possibility because it can cause encephalomyelitis.
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2099906 tn?1335139268
Jacki, thank you for finding the info of that guy from AZ! I will message him and see if he found an LLMD and where. That is very helpful!

As for the urgency...i won't know until my neurologist talks to the neurosurgeon and reviews my MRI from today. I have the final say, so I can slow it down...the only problem is that if it happens to be a lymphoma or something more sinister than MS or lyme, I really need to be on treatment. I need to be on treatment either way, but its tricky since we dont know what we are treating. Also, I know its stupid, but I am really scared that my amazing neurologist will check out when he hears I am still chasing lyme. If I was confident this was the answer, I wouldn't care. I mean my health is of course WAY more important than whatever any doctor thinks. But if its not lyme....I am chasing away my best ally. I don't know why this has to be so polarized and political, its frustrating because patients suffer as a result.

Rico--thanks a million for this link and the one you sent me by PM. Yes, I have heard of tumefactive MS, in fact, it is my current "working diagnosis." I have not, however, heard of the tumefactive lyme, and I have been searching all over for it! I pulled up the link you shared and found a couple lyme articles, but I don't think I'm looking in the right spot to find the tumefactive lyme lesion info. Could you tell me what you click on once you enter tumefactive as a search keyword?

Thank you guys for helping me!

And by the way, the meeting with the neurosurgeon was great today. Very informative, I should say. He reiterated that this is a terrible spot on the brain for a biopsy and that we need to proceed with all possible caution. He agrees that we may be approaching the point where it is critical to know what we are dealing with, and a biopsy may be our best move. But he and my neurologist are going to discuss.

I don't have official results on my MRI today, but it is definitely still enhancing strongly. I can't believe it. Walking into month seven of enhancement! Crazy. I'll look up some more of this lyme stuff, including the ILADS list of symptoms, etc. I do have so many lyme-like symptoms. I just wish there was a clear answer. But then, I bet everyone does!

Thanks for all the help, guys! Have a great night!

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Avatar universal
Try this link.  (The paragraph is in my previous post.)   The part about tumefactive lesions is down in the diagnosis section.  I found it using 'Find on this Page'


What is significant to me is that the first article link I posted says that this type of lesion nearly always responds with IV steroids.  Not only did you not improve, you got worse. I am just a lay person, but after my own experience getting worse on steroids, I would go for the culture test and wait till those results come in before a biopsy. You need a doctor to authorize the test (advanced-lab.com) and they'll only send the blood draw kit to a doctor.  You don't need to convince your neuro that you have Lyme, you only need to convince him that you want this to either confirm or exclude Lyme before undergoing a risky brain biopsy. Show him the article at the above link and that might help convince him to authorize the culture.

I totally understand your appreciation of this doctor.  I really connected with my first neuro, but he just didn't know what to do after I tested negative twice (CSF and blood). But you are also right that if you do have Lyme, you won't be going to him for treatment.

I can be very opinionated sometimes, so please take all of this as my own suggestions from my own experience.  You are doing a great job of thinking things through, asking questions, and looking for clarity!

Please keep us posted!
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Avatar universal
Mandy,  You said above:

"Also, I know its stupid, but I am really scared that my amazing neurologist will check out when he hears I am still chasing lyme."

1 -- it's NOT stupid!  It is a real possibility, and I would be scared too.

2 -- I learned to be very selective in what I told nonLLMDs, because they would think I was nuts and some would not want to treat me for fear of being implicated in committing malpractice.  This is a very real fear for docs, so I understand it.  What I do not understand is how pigheaded they can be about considering that maybe not everything in the universe is already known about Lyme and other ailments.  I mean, ... REALLY!!!

So ... tho I am NOT a believer in concealing things from a doc, you might want to not mention Lyme to your neurologist/neurosurgeon. Here's how I would approach it:  Just walk down the path with them till you have a diagnosis, and on the side, keep seeing your LLMD, working both sides of the street till you get some answers.

I would confide in my LLMD about what the neuros are up to, without hesitation, but not tell the neuros about the LLMD.  Then when you have enough data to decide what to do, run it by the LLMD, and then if you feel compelled to do so, run it past the neuros, but you might want to conceal his/her identity from the neuros, just to protect the LLMD.  Sounds sneaky and conspiratorial, but there it is.

I had a couple of docs who did not want to treat me anymore when they knew I was seeing an LLMD.  It happens.
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2099906 tn?1335139268
Thanks so much guys for your support and balanced advice. Jackie....i think i may do exactly that. I have an appointment with my neurologist and I am going to just see where things go with him. I found an LLMD through the Ilads email address (thanks for that!) and I have an appointment in a couple weeks. So i will just let both searches play out until they have to overlap for one reason or another....hopefully that reason is that we have found a definite answer!!!

Hope you guys are doing well. Thanks again for all the help!

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Avatar universal
Sounds like a plan.  Please keep us posted!

I do not wish Lyme on you, but in a way, I do hope it's Lyme, because that is cureable!
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Avatar universal
Good for you!  Hang in there, and keep us posted --

Things work out.
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Avatar universal
Have you tried Dr.Stephen Fry in Scottsdale, Arizona?
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Avatar universal
Amen, sister.  That's the best advice and that's exactly what I did, too!
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