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?
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.
THIS IS PART 2 TO MY MESSAGE ABOVE... IT WAS TOO LONG FOR THE SYSTEM TO HANDLE IN ONE MESSAGE!
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!
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.
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.
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.
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!
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!
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!
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.
Oh, and someone asked what would be biopsied....the biopsy would be of the 38mm lesion in my brain.
I understand what you are saying, and would share your assessment of your kindly doc.
I just searched online:
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. :)