MS? Lyme?

[LATW]

Hello,
I was dx'd with MS two years ago.  I appear to have MS clinically.  I have had Optic Neuritis and have one brain lesion.  

My doctor is looking at other things because I do not have the normal brain lesions for MS.  I have been tested for Lupus and Lyme.  

I do have some of the Lyme symptoms.  It is so confusing.  

LA

[wonko]

I find it difficult to comment on the MS/Lyme issue as my past experiences make me less than objective.  Be aware that there are strong opinions on this topic, as some extemists in the Lyme communty make over-reaching comments about how "all" MS is really Lyme (a philosophy to which I don't prescribe).  On the other hand, many neurologists (or peopple in general!)  have no clue about the extent to which Lyme can affect a person and will deny Lyme is possible in many cases where it is in fact the culprit.

I also never recall a tick bite in my life.  I don't think that I've ever even seen a live tick up close, just pictures online.  I have lived in endemic areas all of my life, and I know that the nymph-stage deer tick is the size of a period at the end of a sentance.  I also know ticks like places on the body where they can hide.  So I fully beleive that I could have missed the event.

I also clinically looked like MS in some ways.  I had several white matter brain lesions, though most were "non-specific" and only a couple more "MS-like."  I also began to present with neuro symptoms in my late 20's and fit the common gender/ethnic demographic associated with the disease.  I also had constant more mild symptoms and acute attacks/flairs, followed by remissions of improved symptoms.

My spinal fluid was negative for markers for MS and for Lyme disease.  I was negative on the Lyme ELISA test 2 or 3 times.  I had 4 neuros, a rheumy, and my primary care doc all tell me with great passion that I did not, could not, have Lyme.  When I finally got a Western blot done (though a so-called "Lyme literate" MD, outside of my insurance), I came up positive on just a couple of bands, below the criteria for a CDC positive result.  However, my LLMD gave me a clinical diagnosis and I began treatment, to which I ultimately had a positive response.

I never had confirmed ON, but had bilateral eye pain, double vision, and still have flashing lights in my eyes when I move them side-to-side.  Eye involvement in Lyme is more common than I knew.

Have you ever used steroids for your symptoms?  This is an important issue if you are not 100% certain that you don't have Lyme.  While steroids are used to treat auto-immune conditions, they contradict Lyme and other infections.  Steroids weaken the immune system, and their use in Lyme patients can be extremely detrimental.  Please keep that in mind as you work to sort out your health issues.  My experience with even just oral steroids is that I felt better in the short term, but about a month after the course I experienced a dramatic decline in well-being.

Also, do you have any symptoms that seem outside of what MS can cause?  It has nothing to do with the severity of the two, but Lyme causes more symptoms than MS.  That's because Lyme is systemic, while MS is a disease of the CNS.  For example, if you have joint problems in addition to neuro problems, that's a red flag.  I took awhile to develop joint issues, but when I did it steered me away from MS.  Lyme patients also often have some cardiac involvement, and I've had palpitations and developed minor mitral valve prolapse.  Of courses, Lyme can affect the skin, and is not limited to just the classic "bull's eye" rash (which I never had or saw).  I do get other rashes, including facial flushing reminiscent of what is seen in lupus.

Keep asking questions.  Treatment for Lyme can be long and difficult, but it is promising.  To my knowledge, you could continue to use most DMD's while on antibiotics, though don't quote me on that (or anything else, as I have no medical training!).  As noted above, the testing for Lyme is terrible.  IMHO, a negative test for Lyme doesn't mean that the person doesn't have it.  Several doctors, especially those associated with ILADS, uphold the clinical dx of Lyme disease.  You may want to search their site and referral service to follow up on your concerns.

[JackieCalifornia]

22dreams and I seem to have lived parallel lives.  I too live in a city, and I am so NOT an outdoorsy person.  Looking back, I think I may have gotten bit the first time on a trip back East, in 2004.  Odd bouts of fatigue, just ignored it and kept up my usual frantic pace.  MDs just shrugged, and so did I.

Then I got slammed on a second trip back East in 2006.  Saw no tick, had no rash, but I was one sick puppy.  Just like 22 dreams.  Eventual diagnosis by LLMD:  Lyme and babesia.  

Got treated, got pretty much well, then got bit by another !@#$ tick, in the middle of the city we live in in California.  This tick I saw, and it wasn't me imagining symptoms:  I had been having *bad* symptoms for several weeks before I found the dead, dried-out tick stuck way down inside the skin on the back of my leg.  Tick and I both tested positive for Lyme (again/still) and Ehrlichiosis.

Duh stupid me didn't think 'Lyme!' and so I've been going through the same BS routine all over again.  I had a reaction to the treatment I was on for Lyme before, and have held off starting treatment this time.  Not smart, but I have to get some work done given how unproductive I've been for quite a while now (count that in years).  It's a race between the bugs and my brain function.  So far, the brain is winning, but not for much longer.  Time to do rev up the abx again.

I second everything that 22dreams says.  Go get a work up.  It's only your health we're talking about, after all.  /sarc

[22dreams]

LA,

Unfortunately, unless we see the tick (rare) and get a noticeable rash (also uncommon) we do not know that we've been bitten.

Ticks have an anesthetic that they inject so that their hosts (us!) don't feel the bite. They are small, especially the nymphs (babies), as small as the period at the end of a sentence.

2 summers ago, I started to get a stiff neck. I was HIGHLY suspicious that there was a tick on me because of an infestation of ticks in the bushes lining the sidewalk on my street.

I inspected myself diligently and had my sister help me search for it too but we didn't find it. A couple days later, an engorged tick fell off me onto the kitchen sideboard when I returned home from work.

If it had fallen off a matter of feet away, outside the door in my driveway, I would never have known definitively that I was bitten THEN. Except of course for the neurological cascade of symptoms that came within 6 weeks time.

I would definitely venture a guess that that was not my first bite in my life either.

I was bitten in the most densely populated city in New England, the 13th most densely populated city in the US, I believe. A concrete jungle. A pretty unlikely spot to be bitten by ticks in. But: There you have it. If ticks are here, they are everywhere.

I am the least likely candidate for tick bites given I'm a city dweller and have never been an outdoorsy person.

I suspect I was bitten about 3 years or so before that but never saw a tick. I only had one really strange neurological event at the time that went away after a couple days and seriously, I forgot about it. I had increasing, chronic fatigue in the years following, with other odd things thrown in here and there until the Known tick bite.

I was an extremely healthy person, very healthful lifestyle. Even as a child I never got sick when others kids did. So I had a very healthy immune system which is why I think I probably fended off debilitations as long as I did. That last known bite just pushed the bacterial/viral load over the top of what my body could handle.They call that the "water barrel effect" or something along those lines.
And that, as they say, was It.

So: what I'm saying is, it could not hurt to find a lyme-literate doctor to evaluate you. The average doctor, no matter their specialty doesn't recognize the neurological manifestations as lyme. And given the current poor testing, seeing a LLMD to rule tick-borne infections out is really the only way to know with any degree of certainty.

[LATW]

It has been over 30 years since I was last bitten by a tick.  It just seems so unlikely.

LA

[JackieCalifornia]

I agree with 22dreams:  find a Lyme doctor and get a work up.  I went through an ID doc and more than one neurologist (and a whole list of other kinds of MDs), and none of them even considered Lyme ... which is what I turned out to have.

I don't know that your state is full of LLMDs waiting to be called, but if I were in your shoes, that is what I would do.

Best wishes to you!

[22dreams]

BTW: unfortunately, the testing for lyme disease is deplorably inaccurate, including the lumbar puncture, which conventional neurologists are fond of doing. Please know that if you have a LP for MS if they test a sample of the CSF for borrelia, the likelihood of finding it if you are infected is slim.

Statements by a handful of IDSA (infectious disease society of america) Mds predominate out there to the contrary re: LPs. Please be aware that there is a political divide out there surrounding lyme disease. Unfortunate for us.

So: if your LP is negative for lyme, or if any test is negative for lyme, it does not mean that you are not infected.

Let us know how everything goes.

[22dreams]

Here is a link to journal reference on Lyme & MS Having the same Etiology.
and yes, confusion is warranted in such a medical quagmire.

http://www.canlyme.com/lymemultiplesclerosis.html

[22dreams]

Hi LA,

What are some of the lyme symptoms you have?

MS is a misdiagnosis for lyme disease, as you well know or you wouldn't be here.
Some people obtain a co-diagnosis. Which is admitting that one can cause the other.

I've personally sat across the table from a MS patient describing my symptoms to her, particularly the neurological sx & impediments, and she replied stunned "that sounds like me and I have MS".

I am familiar that Optic Neuritis is something common in those dx'd with MS but is also found in lyme disease, since neurological lyme can adversely affect any of the cranial nerves, including the nerve (cranial II?) that runs through the eye.

I sat in a hearing in Massachusetts last year, listening to an opthamologist from Montreal describe how he has diagnosed lyme disease finding the lyme spirochetes in the eyes of patients who came through his door.

Other cranial nerves can be affected by the lyme bacteria which then mimics or is one of the causes (depending on how you look at it) of other diseases and syndromes as well.

Lyme patients have reported being misdiagnosed or co-diagnosed with ALS, parkinson's, fibromyalgia, MS, CFS, chronic inflammatory demyelinating polyneuropathy & other neuropathies, thyroid disease, various dysautonomias...the list is long.

Lyme can cause MS or mimic it. Depending on how you look at it.
The idea is that if lyme is the cause of MS or MS-like symptoms, treat the lyme and the MS symptoms, the demyelinating process will stop once the infection is under control.

Since most lyme patients also have at least one co-infection, this can complicate recovery.

I suggest finding a lyme-literate Md in your area to be evaluated for tick-borne diseases. Most neurologists, rheumatologists and yes, infectious disease Mds, are not well-versed in the health repercussions of untreated, persistent lyme disease. Nor familiar with the better choices in treatment.

Since you have this question in your mind, please seek a LLMD to assess your health situation to at least perhaps rule LD out.