Lyme disease?

If you have Lyme disease, can it cause lesions in the brain..? could it be Lyme disease? Is a test for this done when ms is suspected or does it have to be ask for? Thank you in advance for any responses.. I have joined many different areas on MedHelp under cantsleep2007.. hugs to everyone on here  : )

[ally123582]

I live in Michigan and there is plenty of Lyme!   I'm not sure the area of Michigan you live in, but if you contact Michigan Lyme Disease Association, they can recommend a LLMD.  

[JackieCalifornia]

Welcome.

To my understanding (and I'm not medically trained), Lyme does not causes 'lesions' exactly, but can produce inflammation and swelling in the brain.  Lyme specialists (sometimes called for short LLMDs, or 'Lyme Literate MDs', but it's not an official title or degree) will often do a brain scan called a SPECT scan which measures areas of the brain with low blood flow due to swelling, and that can be an indicator of a Lyme infection.  

First, however, LLMDs usually order blood tests for Lyme and other diseases ticks carry, but the blood tests are far from precise, so it takes an LLMD to read them in conjunction with your history and symptoms.

Now back to your questions, which are good ones.  If you are not seeing an LLMD, but instead are seeing a neurologist or an infectious disease (ID) doc or other who do not take the view that an LLMD would, it is not uncommon for MS to be suspected and to be tested and worked up for MS, since some of the same symptoms appear in MS as in Lyme.

The problem is that nonLLMDs do not usually include Lyme in their differential diagnosis, which as I understand it is a reasoning process like this:  "The patient's symptoms could mean she has A or B.  We will run tests to see if she has evidence of X.  If she does not have X as shown by the test, then she cannot have B, so she must have A."

The problem with Lyme is that nonLLMDs do not often include Lyme as a possibility, and thus the docs go hunting for the other possibilities such as MS and never do fully visit Lyme as a possibility.  Another problem is that Lyme tests are not terribly precise for several reasons, and nonLLMDs tend to read the tests as the final word, without taking into account the poor quality of the tests.  That also leads nonLLMDs to tend toward diagnosing things like MS.

So ... if you have been told you have lesions in the brain and it might be MS, it is possible that your docs, well meaning as they are, may have missed the boat by not recognizing symptoms of Lyme or knowing how to diagnose Lyme.

There are a number of people who post here who were also told they had or probably had MS but turned out to have Lyme, and if you search this forum for MS or multiple sclerosis you might find some of their posts.

Your question is reasonable, but unfortunately there is no straightforward answer to it.

If you ask a nonLLMD for a Lyme blood test, you would probably be given the standard test not used by LLMDs (because the standard test isn't all that accurate) and would probably not be worked up for co-infections that come with the Lyme about half the time, which require different testing and treatment from Lyme.

My best advice would be to find an LLMD for a history and exam and perhaps tests.  It's the best money I ever spent.  Others here may have some suggestions for you as well.

Best wishes -- let us know if we can help further --

[carrie235]

Hi there,


Although I'm not a doctor, I have read that yes, lyme can cause lesions on the brain.  I have 20 lesions on my brain, small and scattered and was seen at UCSF MS.  They said that my lesions are not typical of MS (not right shape, not right area, etc.).  I think MS lesions are usually located in a specific area and follow a certain shape.  Not sure what that is.

I will tell you that my MS doc upon reviewing my first MRI asked if I'd had lyme disease.  Also, I'm pretty sure my LLMD told me that Lyme can cause lesions, but now I'm not 100% sure.  All my other tests for MS were negative.  Also, besides Lyme, there are other things that can cause lesions.  There is something called ADEM which I think is an immune reaction to a virus or vaccine which can cause lesions.  Again, I'm not sure, just speaking from personal experience and from what I've read on the forums (Lyme and MS).

I have had MANY MANY symptoms over the last year and just realized a few months ago that I had Lyme disease with one co-infection.  I've had numbness in various parts of my body, tingling/vibrating, numb feet/toes/face...the list goes on and on.  The good news is that shortly after starting my treatment for Lyme almost all of my symptoms went away!

I still will back to UCSF to follow-up on another MRI to rule out MS one last time (I've already had one follow-up MRI and there was no new activity).  My doctor said after the next one if no new activity, that he doesn't want to see me again!  

Anyhow, so lesions doesn't always mean MS but like Jackie said, I would definitely see an LLMD and be tested.  I've said this before, but I would much rather treat Lyme than MS!

Good Luck and keep us updated!

[cantsleep2007]

Hello and thank you for your quick response.  I am working my way around in here and just have many questions.  I intend to ask one of the many many doctors and specialists that I do have about Lyme disease.. I just need some answers from anyone at this point as I know many of the members here do.  I totally agree with the A B theory that you presented.. It seems that I am working my way through the entire alphabet as they mark things off of the list.. x keeps coming back to MS unfortunately though because I have lesions that were caused from something and I am only getting worse as you may  have already read.  Thank you again..  Terrie

[cantsleep2007]

Thank you for the information..  I am looking into more info on Lyme Disease as we speak and I agree with you.. it sounds like Lyme is much easier to treat and the outcome is much better than that with MS.  It has not been mentioned to me by any of my doctors but I want to be tested for Lyme and yes I will look into someone who knows about that area.. To me its one more hope so to speak.. that it would be something that could be treated.  Thank you again.. I will let ya know what I find out..  

[JackieCalifornia]

And remember, the whole upper midwest is full of Lyme -- as are a lot of places, but MI for sure.

Keep digging!  Let us know how you do, okay?

[cantsleep2007]

Thanks Jackie,  will do.. it seems that Lyme is much more common then I thought.. I hope for some new testing to be done soon.  I am waiting on insurance at this point so it may take a while for the actual test but I will keep everyone up to date.. thank you for your help have a wonderful day.. : )

[JackieCalifornia]

You might want to search/google "Michigan Lyme Disease Association" -- they might have some helpful information for you.

When I searched just "Michigan Lyme" [without any other words], there were the usual websites put up the government and medical associations trying to be soothing, that Lyme is rare, Lyme is no problem, etc.  That is nice to hear, and, no, we should not panic about Lyme, but many of these well-meaning organizations want to discourage people from investigating Lyme further.  Don't be put off by that.  Only after investigating at some level can you figure out if you may have Lyme.  Being told 'you probably don't have Lyme' doesn't mean you don't!

Try not to worry, tho, okay?  Figuring out the questions to ask is the first step to finding the answers.  Hang in there!

[ally123582]

I live in Michigan and there is plenty of Lyme!   I'm not sure the area of Michigan you live in, but if you contact Michigan Lyme Disease Association, they can recommend a LLMD.  

[blamom]

Lyme can absolutely cause lesions on the brain, this happened to me and I then had an aneurism (aneurysm) followed by a stroke, all caused by lyme disease.  You need to see an LLMD.

[cantsleep2007]

Hello again Jackie, I went for a lot of blood work yesterday and am going for a venus doppler of my legs and feet today and seeing my doctor.. I will ask about the Lyme test today.. Is there any distinct difference between Lyme Disease and MS that anyone on here knows of?? I understand that is a big huge question for everyone on here but I have had some bad days this week to say the least and am just getting desperate I guess.. I will look into ANY options to just feel better or at least somewhat normal again! How does Lyme progress? stages? I apologize for all the ?? but I am sooo frustrated with the loss of control of my health and things are changing weekly and its all downhill.. I have done a bit of research on Lyme and as with so many other possibilities I have thought of.. I would be ok if what was wrong with me is anything diagnosable at this time!! then maybe I could be treated for it.. maybe know for sure that I have a future.. sorry again I am just having a rough day.. thank you for your time..

[JackieCalifornia]

There are a number of people posting here who were initially told they had or might have MS, but eventually were diagnosed with Lyme and not MS.  You might want to search "multiple sclerosis" and "MS" in the search box at the top of this page to find those posts.

To my understanding, Lyme is a bacterial infection, while MS is an autoimmune disease, so they arise from two completely different mechanisms and require completely different treatment.  It happens sometimes that Lyme patients are misdiagnosed with MS and treated with steroids, which suppress the immune system, and that is exactly the opposite of what a bacterial infection like Lyme requires.  That is why it's so important to get a correct diagnosis -- it's not just an 'oops' -- it has real and serious effects to be treated improperly.

Unfortunately, many/most mainstream docs (nonLLMDs) are not trained or aware of Lyme and tend to downplay its prevalence and therefore don't test for it.  Also the 'standard' tests for Lyme are not very accurate, so not only are the nonLLMDs not fully testing for Lyme, they also tend not to recognize the symptoms or classify the symptoms as something else (like MS).

None of us here can say if you have Lyme or not, but before I accepted an MS diagnosis, I would find a Lyme specialist for a work up.

Here are some websites with information about Lyme:

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)

An LLMD would also be more aware of other diseases often carried by Lyme ticks, and those infections need different testing.  Even infectious disease docs are always not clued in, because they simply aren't aware of how widespread these infections have become.

It's not a question of what test to ask for, it's a question of the MDs understanding what they are looking for.

[cantsleep2007]

Hello all.. havent spent much time on here lately life just gets too frustrating and I think as a defense my brain says " just don't for now " I will always come back.. just have them days : ( I wanted to let everyone know I finally got my Lyme test today! My pcp was the one who ordered it thankfully.. he is a blessing and seems to relate some to Lyme and totally agrees that we should do the test.. no harm in a blood test.. I wont hear for a while but he said no news is good news and I can call next week and they should hopefully have something back.  He did not look surprised at all that I said I really hope it is Lyme disease.. not to by ANY means make light of this illness at all.. I just know that from what I have learned on here that at least there is hope and treatment for this.  

I am also leaving Michigan, moving back to Ohio. I have no choice now.. without insurance or any income there is no one here who can take care of my needs. My mother is truly wonderful and I would love to take her with me but it's just not possible.  My entire immediate family is here in Michigan. I do have a daughter and son in Ohio though and I will at least see more of them and my grandchildren.  The worst thing of all is leaving my youngest two sons here in Michigan with their father and step mother. If anyone has read about me, I turned over custody of my boys to their father back in January because I am no longer able to take care of them. I can love them, hold them, talk to them, and just be there for them no matter where I am. But I can no longer drive, walk to keep up with them, or even so much as help them with simple school tasks. I have been devastated by this most of all!!  I NEVER would have thought that I would be without my babies.. but life just doesnt always go the way we plan. This disease has taken away my entire life.. to say the least.  I have now also lost the ability to write.. imagine that?? I sat down to write a letter to my sons to help them understand what is happening and why and couldnt even spell or even make my words legible for them to read! I have no words for that... I am so sad that at the age of only 45 I am losing all control of my body, mind, and life.

My fiancee is in Ohio and this is where my boys and I moved from almost two years ago.  I came here because at least I would get a chance at medical help and I did, and my boys would be closer to their father because I was at that time having difficulty driving back and fourth to meet with their father every other weekend. I cannot stress enough how devastating the choices I just have to make now are!!  I will still be seeing my boys as I have but not like I need to.. This decision was for them too more then I can tell them with my own words, this is why I tried to write it.. : (  I know that with help they will one day be able to understand, well maybe learn to accept what happened to mom.  God I love them!! I will miss the hugs whenever I was having a down day and all of the wonderful help that they always tried so hard to give me.  They need a good education though and they have a wonderful father and step mother that will help them to do the best they can.

Its scary, how all of this sounds god I have begged for my life back!!!!
Now I will do the best I can and continue to be the best mom in the world to them as they have told me soo very many times.. I just cant let them fall apart watching me deteriorate anymore and that is what was happening. Not to mention the drop in their grades in school.. Just too much for a 12 and 13 year old to have to do. Life can be so very very unfair!! Probably wont post for a while on here.. I need to let go for just a bit.. need to try to feel as close to normal as I can and live day by day.. sometimes minute by minute. My prayers go out to everyone on here that deals with the issues that we all do your in my thoughts always. I apolgizwe for the length of this but sometimes this is how I deal with bad days. Thank you for reading god bless

[Ricobord]

I'm so sorry to read your story.  I think I'm on a similar path, only a bit earlier in the process. I too am 45 and am having fatigue (15 months), headaches, shortness of breath (9 months), tinnitis, memory problems, forgetfulness, difficulty focusing or concentrating, and terrible sleep disturbance.  A recent MRI turned up 15-20 white lesions in the white matter of my brain, but I have no other symptoms of MS.  My neuro is looking further for MS but also testing for neurologic Lyme.  If my initial blood test and the lumbar puncture tests come up negative for Lyme (they could all be false negative), I'm going to get tested by IGeneX in Palo Alto, CA as they do advanced testing.  I don't fit the MS profile or the Sjogren's profile but Lyme does mimic both.  

I, too, am having trouble taking care of my daughter. My husband travels a lot and I have an active 5 year old.  I have no family nearby, but wonderful friends from my church have been helping me.  

Did you get a diagnosis?  I hope so!  I hope to have one in the next 2-3 weeks.

[JackieCalifornia]

If you determine that your neuro is not up to the job of dealing with diagnosing/treating Lyme, let us know and we might be able to help you find a Lyme specialist ... I see you're in California too.

Your neuro sounds like s/he is trying hard, but sometimes they can't fully compensate for their blind spots when it comes to Lyme.

I'm not medically trained, but to my understanding, lumbar puncture is not particularly helpful in diagnosing Lyme, but a doc's gotta do what s/he thinks is best.

The brain scan that a Lyme specialist may suggest is called a SPECT scan, because Lyme produces (so I understand) not lesions in the brain, but areas of low blood flow (hypoperfusion) that and MRI doesn't show but a SPECT can does.

Best wishes, and welcome.  We hope you're very well very soon, whatever is ailing you!

[Ricobord]

My neuro was already doing the LP to look for MS markers and a couple other things, so he added in the Lyme antibody tests. They were negative.  The blood tests, incl. the Western blot were negative, too.  

I think I have Babesia, though, which I've read can suppress the immune system, resulting in little to no antibodies for Lyme.  I've read the Western blot is only 60-70% accurate anyway.  This neuro knows little about Lyme and admitted he didn't think of it as being in California. He actually asked me how you can diagnose it if the tests are negative. (I told him about IGeneX). He's a great guy and has been very open to my input and requests for the Lyme tests.

He has now referred me to UCSF's MS clinic, as well as to an infectious disease doctor (I'm skeptical given what I've read about the IDSA). Looks like I have some masses in my liver and a nodule or lesion on my left adrenal.  I've been feeling the adrenal (I thought it was kidney pain), so it didn't surprise me when they saw the lesion on a CT scan.  I get a full abdominal/pelvic MRI on Monday, which I'm happy to get.

Did the UCSF neuros diagnose you?  How did you finally get your diagnosis?

Yesterday, I had a long conversation with a relative of my long time friend who was just diagnosed around Labor Day.  She was sick for 15 months before that and was much worse off than I am. However, we have an amazing overlap of symptoms.  She has Lyme, Babesia, and Bartonella. I could also have Bartonella or Ehrlichia given my liver involvement.

We'll see what happens, but I fully expect to be sending tests to IGeneX and booking an appt. with an LLMD in the near future.  I'd love to know who you see.  I'm in the East Bay.

Thanks for the encouragement!  I'm going on 16 months of not feeling well, and progressively getting worse.  I'm anxious for a diagnosis and treatment, whatever it is.

[Ricobord]

Sorry, JackieCalifornia...I confused your post with carrie235!  (Classic for me and my now scrambled brain.)  

carrie235 - Did you get diagnosed at USCF?  I have been referred to the MS clinic there, and I'd like to think they've seen neurologic Lyme before and can recognize it.

I'm just up the freeway from you...mind if I ask who your LLMD is?  I'm looking to go to one soon. (I plan to see the infectious disease doc first, to get a bunch of tests run which will be helpful, but I'm not expecting much.  I'll probably see the UCSF docs, too. If I can get them to refer me to an LLMD as the only one knowledgeable in the area who can treat me properly, then my insurance will pay all of the costs.)

[JackieCalifornia]

Greetings.  Altho your message was meant for Carrie, I thought I would also respond if you don't mind.

I will send you a private message with the name of my LLMD, for your reference.

I went through UCSF on my way to a Lyme diagnosis, and the three neurologists who saw me there were wholly unimpressed with my condition.  I was very ill with Lyme and babesiosis, but they did not diagnose it, or make any diagnosis at all.  I was simply sent on my way with an admonishment not to let anyone do surgery, or something like that, but all very vague.  I think the fellow (who was very senior) thought I was just a head case.

Thus your hope that UCSF neurologists would be able to diagnose you may be overly optimistic.  

Docs trained to look for MS and trained to disregard Lyme are going to have a very very hard time diagnosing you with Lyme.  It is a color in the rainbow that they cannot see.

They would also, if my experience and that of others is any guide, would consider it inappropriate and verging on malpractice to send you to an LLMD, because to nonLLMDs, LLMDs are not practicing medicine appropriately.

I found insurance to be less of an issue than you might anticipate; the insurance companies are not as difficult as the nonLLMDs.

Lumbar punctures are not, to my understanding, particularly diagnostic of Lyme, but neuros rely on them to rule out Lyme.  A negative LP for Lyme does not mean that you do not have Lyme; it may well mean the test is not appropriate or accurate, but neuros think it is just fine.

The W. blot and the companion ELISA test are not very good either, so a negative test does not mean that you do not have Lyme.

I don't know that Babesia suppresses the immune system, but the synergy among Lyme and other infections such as Babesia and Bartonella tends to have a magnifying effect, so that 1+1+1 infections does not  necessarily equal 3, but instead equals 5 or 6, because of the 'piling on' effect of the infections, each one doing damage to the immune system and thus making it more susceptible to the other infections.  A downward spiral.

That the neuro doesn't think there is Lyme in California tells me, quite frankly, that he knows next to nothing about Lyme.  

The tests are very inaccurate for several reasons, one being that Lyme bacteria divide very slowly (as do the bacteria causing TB and leprosy/Hansen's disease), and the human immune system is not set up to deal with infections that require long term defense.  Instead, the human immune system assumes after a few weeks that the infection is dead, and so quits producing antibodies against the bacteria.  Result:  the W. blot and ELISA tests often come back negative, esp if you have been infected for longer than a few weeks, because those tests measure the ANTIBODY levels in your blood ... which your immune system stops making.  Diagnosis of Lyme should be based on clinical signs and symptoms, aided by the tests, but not based solely on the tests.

There is another test created by IGeneX labs in Palo Alto which looks for Lyme bacteria DNA, that is:  direct evidence of the infection.  Non LLMDs sneer at IGeneX, but LLMDs often use it.

I don't know why having Babesiosis would affect the antibody levels your system makes against Lyme.

I love this:  that your neuro "actually asked me how you can diagnose it if the tests are negative. (I told him about IGeneX). He's a great guy and has been very open to my input and requests for the Lyme tests."  That's nice, that he's open to new things, but if he has not bothered to look into IGeneX or the work done by ILADS [the main LLMD organization] and the Columbia University Lyme research center in NYC, then the neuro is not paying attention.

Witness that "He has now referred me to UCSF's MS clinic, as well as to an infectious disease doctor (I'm skeptical given what I've read about the IDSA)."  These are the usual default reactions of MDs who know nothing about Lyme.  Sorry to be blunt, but I'm so up to here with docs who engage in this willful ignorance.

I went through 20 MDs at UCSF, at Stanford, at St Mary's hospital in SF, and a bunch of other places, and it was by chance and desperation that the Stanford endocrinologist ran a Lyme test, which came back mildly positive.  The doc's reaction?  "Oh, you couldn't possibly have Lyme disease -- I have patients with Lyme, and they ... are ... all ... near death."  That is an exact quote.  Well meaning, and totally clueless.

I strongly suggest you not waste anymore time, and go see an LLMD for a work up and order of the appropriate tests, based on your symptoms.  That is how I was diagnosed with Lyme and Babesiosis.

I will send you a private message through this system with information about my Lyme doc.  Best wishes ---

[Asdbgbq]

As we all know, Lyme is a epidemic - it's just disgusting and really evil that it is so ignored - no easy answers or miracle drugs.

I have had Lyme twice, Bartonella, and my 2 daughters (12, 19) had Lyme, Babesiosis and Ehrlichiosis.

I have gone to 4 LLMDs in the area (New York) over 7 years and witnessed and shared a lot with other Lyme sufferers.

DO NOT LOOSE HEART! That's what the bugs want! Bartonella is the one that causes lesions and has been linked with MS like systems. Panic, anxiety, depression are all part of that mix.

Babesiosis looked like menopause for me - night sweats, fatigue, brain fog, no short term memory along with shortness of breathe. It was treated with Malaria medication first.

The three of us are all Lyme free or Lyme symptom free - it's been about a year!

We had heavy does of oral antibiotics and other medicines targeted for these diseases and then IV doses DAILY for over 3 months to attack each of the diseases. We had bi-weekly check ups and blood tests to closely monitor it all.

The different bugs react differently and you need a specialist who know what to look for and checks with you often.

This is the only treatment that has worked for us. We have also started acupuncture and herbal remedies as a follow up and to keep the immune system strong along with changes in diet and exercise/sun/fresh air.

I have used all my savings and gone into debt but I had to do it. I was loosing everything and everyone that mattered.

They tested the teens in a private mental health institution and found that 50% of them had Lyme! It's a crisis.

I wish you all the best and if I can be of help - ask away.

[JenRenWood]

That was so encouraging! I have been treated for MS for 6 yrs. now and there was absolutely NO remission with the interferon shot.  My first (Quest Lab) Lymes disease test came up negative in 2007. So they did an MRI which showed many non typical lesions and started with steroid treatment followed by a life plan of interferon shots.
Finally, sick of this cycle and digressing from limping, to using a cane, and now a walker- I demanded a $200 Lymes disease test that I heard about in San Paulo, CA.  My neuro wouldn't agree to prescribe this but a homeopathic/ nutrition doctor would! Wow, I have 5 out of 8 bands testing positive for Lyme's (one was the spirochete which is known to mimic MS.) I'm so thankful to feel some relief already and to have a hope of getting better!

[JackieCalifornia]

Welcome -- and congratulations for persisting in getting a diagnosis that makes sense to you.  You have really been through the mill over the years, and my heart goes out to you.

Is the homeopathic doc going to treat the Lyme?  And have you been tested for other infections the Lyme ticks also carry about half the time?  I see there is a Michigan Lyme disease association (at least one) in a quick search on the internet, and they may be able to give you some suggestions, if the homeopath is not well versed in Lyme.

btw, Neurologists are famous for not 'believing' in Lyme, so it's not all that surprising that he resisted even testing you.  And if he had tested you, he might still have resisted making a diagnosis.  Neuros can be esp. stubborn that way, along with infectious disease docs and rheumatologists.

ILADS [dot] org is the main voluntary group for MDs of all kinds who 'believe' in Lyme, and there is much good information there, if you are interested.  Dr Burrascano's treatment guidelines may be useful too.

We're glad you've found us here, and hope you will stop by and let us know how you are doing and if you have any questions we might be able to comment on.  No one here is medically trained that I know of, but we've all grappled with Lyme one way or another.

Congratulations again on your persistence -- very admirable!  

Best wishes -- !