Lyme or MS

[SueFern]

Have you heard of having a cervical lesion with Lyme's?

I have been having numbness in my left hand and arm and feet with tingling sensations since November.  I do have some joint pain and muscle cramping and feel like my skin is on fire sometimes (especially my hands) My nuero told me I was on MS alert.  However, after she said that I had a Lyme's test come back positive with acute (beginner stage) of Lyme.  She said this didn't make sense since it is not normal to have neurological symptoms in the beginning stage, but said it is still possible.  I was on antibotics for three weeks.  She is going to retest me in a few weeks to see if they worked.

In the mean time she still wanted me to follow up with MRI's 3 mths after my previous one.  I just got the results of those.  A small lesion that I had on my brain from the report that I am reading seems to have gone away.  However, I now have a cervical lesion on my C2 of 7mm in size.  It says right on the report that it is from transverse myelitis or MS.  So now I am confused.  I am reading a lot of articles about findings of lesions on the brain with Lyme's but I am not finding anything on the cervical.

I have my follow up appointment on the 25th with my neuro and this week is going to go by soooo slow.  What do you guys think?

Thanks,

Sue

[JackieCalifornia]

Sue,

You're very welcome.  Many of us here have been through and/or are going through what you are, so we're happy to share what we have learned.

LLMD does mean Lyme Literate MD.  It's patient slang, meaning a doc (any kind of specialist or a GP) who takes a special interest in Lyme and goes beyond the standards set by the IDSA (Infectious Disease Society of America), the main MD group in the US for infectious diseases, which Lyme is.  I didn't know until I got Lyme and went through all the nonsense of 20+ doctors and a lot of dead ends and blind alleys that these specialty groups like IDSA work together over time to put together diagnostic and treatment standards in their own area of medicine, which they then publish, and other docs (both in that specialty and otherwise) use those as guidelines.  

Kind of like those big ole books mechanics have when they work on your car, they look up what the book says about the carburetor problem you're having, then they put that together with the 2000 other carburetors they themselves have rebuilt over the years, and they figure out what to do.  Same with docs, except docs are a lot touchier about these things because they can be charged with medical malpractice if they mess up, and following the IDSA guidelines is not only useful to the docs, but gives them some cover if something goes wrong:  "Well, your Honor, I followed what the premier medical organization has published as its treatment guidelines."

Infectious disease (ID) docs tend to follow the IDSA guidelines, naturally, but so do other kinds of docs.  Docs who think bigger and more progressive thoughts about Lyme and other tickborne diseases carried by the Lyme ticks are what we call LLMDs for short.  So yeah, you got the reference correctly.

The downside is that no doc will call him/herself an LLMD, so it's hard to know if you've got your hands on one or not.  I found personally that neurologists and ID docs are quite unlikely to be LLMDs, but I also so several endocrinologists and ER docs (heart palpitations) and internists and others.  Sometimes it takes a couple of tries to find a doc who is a good fit -- but it's worth the search.

There's no reason NOT to see the ID doc you have an appointment with, but just have your antennae out as to how broadminded s/he is.  Sometimes you get lucky.  If not, then you know to keep looking.  In some states, docs can be hauled before the state medical board and even lose their medical licenses for not following the 'guidelines' in a particular field, and in those states, docs are esp. careful to either follow the IDSA guidelines or to stray carefully and quietly.  

Yes, it's all very silly and stupid and not good for the patients, in my not-medically-trained opinion, but it is what it is for now.

In your situation, I would probably go see the ID doc your neuro wants you to see, and if the ID doc doesn't mention Lyme, I might venture a question like "You know, I might have gotten what was a tick bite a while back, not long before these symptoms started, so are there any tests for anything like that?"  If the doc doesn't bite, then at least you tried.

The holistic doc you mention might be a good chance, not only for a referral to an LLMD but maybe treats Lyme him/herself.  My motto is:  press ahead on all fronts simultaneously!

Your message includes:  "I am worried that maybe Lyme's has triggered an auto immune response of MS if that is possible."  Wonko can speak to the Lyme/MS issues far better than I, but the mention of auto immune triggered a thought in me -- part of the IDSA approach to Lyme is that if a patient with a documented Lyme infection (tick seen, circular rash seen, a positive test) is treated with the standard IDSA 2 - 3 weeks of antibiotics and still has symptoms afterward, then the disease is cured but the body continues to react as though the infection is still there, so you still have symptoms and a possibly a positive Lyme test.  An LLMD would be more likely to say you were incompletely treated and still have the infection and therefore the tests are, yes:  positive.  So if you get the autoimmune comment, that tells you something, perhaps.

To find an LLMD, you can google/search "LLMD New Jersey" or whatever city is close to you and see what pops up.  Here are some websites that may or may not have a current referral function:

ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

Best wishes to you -- let us know how you do!

[SueFern]

Jackie - Thanks for all of your info.  I have never heard of a SPECT scan.  By LLMD I am assuming you mean Lyme Literate Doctor.  I have heard these doctors are hard to find.  My neuro said she might refer me to an infectious disease doctor...but is that the same thing??

Carrie - I remember reading your story prior to finding out that my Lyme's test came back positive.  Hearing how the steriods made you worse is what gave me hope that this might be Lyme's and not MS.  When I first started having numbness and tingling issues the first things my doctor put me on was steriods.  He thought I was having a complicated migraine and he put me on them for 3 weeks.  I felt miserable when I was on them.  Thanks for putting your story out there for everyone to read.  I am so glad you are feeling so much better!!!

Wonko - Thanks for your advice.  I have my follow with my neuro on the 25th and then I have an appointment with a holistic doctor on the 28th that I have heard great things about.  I am not sure if he is an actual "LLMD" doctor but I want to get his advice on things.  He also works hand in hand with regular doctors so he might be able to refer me to an LLMD.  At this point I am going to see what my neuro says, go to an infectious doctor, holistic doc and try to find an LLMD doc. How did you find your Lyme specialist?  My test results just aren't giving a clear picture of what is going on and I am worried that maybe Lyme's has triggered an auto immune response of MS if that is possible.  I am glad you are starting to feel better.  Hopefully it keeps going that way and you make a full recovery.

Thanks again!

Sue

[wonko]

It has been my experience that neurologists fall into the category of medical professionals who believe that Lyme disease is "hard to get, easy to treat."  Neuros, in fact most all doctors, rely on testing for Lyme as well as classic signs of presentation.  The strict interpretations of the tests and the narrow definitions of what Lyme can and can't cause symptom-wise leaves many patients falling through the cracks.  Therefore, I would suggest that if you truly want to pursue the matter of Lyme disease, then you should seek out opinions (note the pluralization) of medical professionals with expertise in Lyme.  

JackieCalifornia is correct that MRIs are not diagnostic of Lyme disease.  Lyme disease can cause abnormalities on MRI, but it doesn't do so in all cases.  I researched this more intensely in the past owing to abnormalities in my brain MRI.  I'm not medically trained, but my understanding is that there is simply a lack of information about Lyme disease and how it affects the central nervous system.  For example, to my knowledge, it is not know if the lesions that are sometimes caused by Lyme are due to demyelination, such as in MS, or if a different mechanism causes damage.  It is also not clear as to whether lesions caused by Lyme will always clear up with treatment.  The lack of information probably has something to do with the fact that Lyme is a contested disease.  Since doctors can't agree on how to test for it or treat it, or about whether or not it can be chronic, a Lyme disease diagnosis is not well defined.  And I imagine it's tough to study a patient population when there is no consensus of how to define it.

I went undiagnosed for a long time and can relate to the frustration of waiting for appointments, etc.  If the two primary suspects in your case are Lyme and MS, I would suggest that you move forward pursuing both.  But I would not, as noted above, rely on your neuro to navigate Lyme disease.   Fine another professional for that possibility, stick with the neuro to work you up for MS.

Carrie makes an excellent point.  The steroids that are used to treat autoimmune disease flares are completely inappropriate for people with infections such as Lyme.  That's because the steroids are immunosuppressants, and Lyme bacteria can thrive when your immune system is knocked down by steroid use.  However, steroids are only used for symptom relief in MS, that do NOT treat it.  You can ask about this over on the MS forum, and I think they will confirm that steroids may help you recover from an MS flair, but they will not reduce the damage caused by MS, nor will they slow down disease progression in MS.  On the other hand, MS progression can be slowed by disease modifying drugs (DMDs), and MOST DMDs do NOT interfere with antibiotics.  So what I'm getting at here is that you could treat MS with DMDs (but not steroids) and at the same time treat Lyme disease with antibiotics.  Life's complicated, you may have more than one culprit affecting your health, so keep that in mind.

Do not take the positive Lyme test lightly.  Lyme is treatable even in late stages, but the later it is caught, the longer and more difficult treatment may be.  I was steered away from Lyme disease by doctors and it took a long time for me to get diagnosed and to start antibiotic treatment.  And while undiagnosed I was given steroids.  So by the time I got to a Lyme specialist my life was falling apart:  I'd been to about a dozen doctors and I thought I was going to have to retire at age 30 and that I would become a burden on my family.  But I responded to treatment and while I'm still struggling, I'm much improved.

Good luck.

[JackieCalifornia]

Carrie, excellent point about steroids being bad for someone with Lyme.  Is that standard treatment for what seems to be MS?

[carrie235]

Hi Sue:

I feel funny typing my story over and over for the poor people on this forum who have had it so many times, but I was bitten by a tick when I was 13 or 14.  I'm not 49 years old.  

I had my gallbladder removed January 2010.  A few weeks later, I abruptly started getting all kinds of neourological symptoms...numbness, vibrating, tingling, you name it.

After several neuro's telling me it's all anxiety, I ended up at UCSF MS center and had every workup imaginable.  I had a brain mri, c spine mri and t spine mri. plus loads of other tests.  I had 20 small lesions on my brain, not typical for MS.  First thing my doc asked me was "have you had lyme disease".  Anyway, I went back six months later for another MRI and no changes.  Finally, just about 8 weeks ago, I was diagnosed with Lyme.  Went to an LLMD, started meds and almost all my symptoms have already subsided.  Every now and then, my left leg will vibrate, but barely noticable and it's only been 8 weeks!   Keep in mind, that for almost a whole year, I was living with various changing symptoms EVERY DAY!  (AND FREAKING OUT ABOUT THEM)

I go back to my LLMD next week to get results of remainder of blood work and brain spect image scan.

So....I don't really know about the lesion on your spine.  I will be following up at UCSF for another MRI in July.  It will be very interesting to see if any of my lesions have cleared now that I'm being treated.  

I highly think it's possible that what you are describing is because of the Lyme (I don't getting the burning that you describe but from what I understand, everyone has different symptoms depending on which co-infections they might have).  My lyme became activated because after my gallbladder was removed, my immune system just couldn't keep it in-check any longer because of the trauma from the surgery.  My llmd says that lyme probably caused my gallbladder to fail as well and it makes sense because I am certainly not a poster child for gallbladder disease!

I would much rather treat Lyme than MS so I would definitely check into it asap.  Also, I'm not a doctor, but Steroids are REALLY bad for Lyme disease patients, so keep that in mind because I know that a lot of MS'ers are given steriods for flairs.  (I spent a year on the MS forum before I realized I had lyme).

Let us know who it goes!

Carrie

[JackieCalifornia]

Sue

As you are seeing, non-Lyme-specialists are not taught to look for Lyme, or to view a set of symptoms as indicating possible Lyme.  It's just not on the radar screen.

MS, yes -- the neuros are taught about MS.  Your neuro was progressive in even testing you for Lyme, but there's no fixed progression in how soon various symptoms appear, from what I read.  It's also possible you were infected before last November, and symptoms are just showing up now.  Lots of variables and unknowns, but nonLLMDs are not attuned to those possibilities.

Lyme bacteria have an especially slow reproductive cycle, like the bacteria causing tuberculosis.  The Mayo Clinic website says:  "Medications are the cornerstone of tuberculosis treatment. But treating TB takes much longer than treating other types of bacterial infections. With tuberculosis, you must take antibiotics for at least ***six to nine months.*** ..."  The reason has to do with the bacteria being their weakest when they are reproducing, so the slower the reproductive cycle, the longer the treatment needed.  Somehow tho mainstream medicine does not apply this principle to Lyme.  I have never read anywhere why non LLMDs do not take this into account.

Also I have read that because Lyme bacteria have the ability to go dormant inside a slimy shield they build in the body, called a 'biofilm', the immune system can't see them to kill them by producing antibodies.  And if there are no antibodies produced, the tests nonLLMDs use for Lyme will come back negative, because the tests don't look for the bacteria, they look for the antibodies.  No antibodies?  then you must not have Lyme.  But that doesn't take into account the biofilm, or the immune system's tendency to give up after a while.

MRIs do not detect Lyme infection in the brain.  A SPECT scan, which shows blood flow (or rather, the reduction thereof) in the brain is what LLMDs use.  Neuros don't.  (My MRI was fine.  My SPECT scan was a mess.)

Lyme is different in everyone, and the symptoms vary over time.  Unfortunately, most neurologists are still basing diagnosis and treatment on old principles which miss many Lyme infections, and they don't tend to test for other infections carried by the same Lyme ticks.

I'm not medically trained ... but in your situation I'd find a Lyme specialist and take copies of all the test results along for the Lyme doc to review.  And I probably wouldn't tell my neuro or other docs I was doing it, because that introduces a bad element into the relationship with the nonLLMD docs.  That's just me, but that's the result of my experience with about 20 docs before finding out I had Lyme and being treated for it.

Sorry to complicate things for you.  Nothing about Lyme is easy --

(Sorry if this is a little disjointed ... I've gotten interrupted a few times.)