Need guidance

Hi, I've been reading the posts on Lyme and MS on this site for a couple of weeks.  I just don't know what else to do at this point.  Last summer I began experiencing some pretty rough fatigue.  I couldn't get enough sleep, no matter how long I slept.  (very unusual for me)  During that time, I began getting extremely stiff when I sat for more than 30 minutes, that would work it self out as I got up and moved around.  One day, I woke up and noticed that my right side (arm, leg, foot) felt like it was halfway asleep... tingly, crawly feeling.  

By the end of the week it had progressed to my left arm, back, chin and rt cheek.  I kept having to look in the mirror because it felt like that side of my face was drooping, but every time I looked, it was exactly where it was supposed to be.  I went to the doctor the following Monday.  The doctor ran tests for everything including a Lyme test.  A week later, the IGM on the Western Blot (She did not do the Elisa) came back positive, IGG negative.  I was referred to an Infectious Disease Dr and was immediately prescribed Doxycycline, which I began taking that afternoon.  

By the time I began taking the antibiotics my neurological symptoms had subsided but I still had that horrible fatigue.  After a week or two on the doxy, my fatigue also subsided.  The ID doctor did another WB and Elisa test for Lyme, both came back negative.  I was ordered to stop the doxy after 3 weeks of taking it.  (This was in late November 09.) He then sent me to a Neurologist saying I didn't have Lyme.  The Neuro did an EMG, which he said was normal.  He did a lumbar puncture and the only thing abnormal was a slightly elevated protein, but no O-bands. (This was in December 09) He said he can find nothing wrong.

In May or June, the tingling started back up in my arms and legs, but a new symptom was horrible cramping in my right foot.  The foot would literally turn outward to the side forcefully and I would have to pull it back straight and stand on it to keep it from going crooked again and it was very painful. This happened several times a week for 3-4 weeks and then just went away, but my foot regularly twitches now, just no cramping.  I called the Infectious Disease doctor and had him order another Lyme test, and he called me to tell me it came back negative.  (It was the WB test.)  The numbness and tingling continues in my arms, worse with the right arm.  It feels much heavier than the left, but I can still use the arm.  I'm not really having any pain, but I'm still extremely stiff and tired and the tingling won't go away now.  

Here's the kicker... I wet my pants this past Friday at work!  This is crazy to me!!  Now I walk around worrying that I'm going to do it again.  I don't want to seem like some crazy lady just trying to find a "disease", which is exactly how my PCP treated me last year when I went to her about it before the Lyme test came back.  I haven't seen her since, nor have I gone back to the doctor this year since my symptoms have returned...Only that one call to have another test run for lyme back in June, but I don't know what else to do.  No more trips to that PCP, I won't be seeing her again, ever.  Someone please give me some guidance.  I live in Florida where Lyme is not prevalent, but I still think there is something to that original positive test result.   Any guidance you can provide would be welcome.
Thanks

[Audrey_M]

I live in East Lyme, CT, basically where Lyme Disease was coined.

My son has had Lyme Disease 4 times now. Two were cases that were diagnosed in late stage Lyme Disease. The first responded well to treatment, but the next one took almost a year to treat.

Based on your test results and sx, my thought is this in not Lyme. The WB test will show active Lyme in the IgG bands, especially if you have had positive results in the past.

What does your ID specialist say you should do at this point? I would hope that he/she has recommended you consult a neuro. This is probably your jumping point. Consider having one last appointment with the ID specialist where you bring you list of sx and ask where to go next. Please make sure to get copies of all test results and transcripts.

One last note...Lyme is highly controversial and there are two distinct camps of thought on this disease. I tend towards the conservative view and NIH guidelines in terms of treatment. This is yet another disease that requires much more research on so many different levels.

Be well and hope you find some answers soon.

Audrey

[Deb61]

Here's an excellent site for discriminating MS from Lyme Disease:  

http://en.diagnosispro.com/disease_comparison-for/lyme-disease-versus-multiple-sclerosis/16184-16822.html

From what I've read, there's a few symptoms associated with Lyme Disease that isn't normally found with MS.  For example the rash and arthritis.  I'm sure there's others, but it's worth looking through.  The site is full of good information.  

From the research on the following site, it's very difficult to discriminate between the two.  It was even suggested that a treatment of IV antibiotics and Copaxone is recommended in that case:  

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

I hope you will find a good neurologist that will figure this out for you.  Best of luck, Deb

[Deb61]

Have you had fever, rash, joint pain/arthritis in the beginning?

[smercer2]

Thank you for the info.  I have had minor pain in my ankles and feet. It feels, though, like it is more related to the stiffness, but the way my body is acting to crazy, it is hard to tell.  It has been going on since the beginning of all this too.

Audrey, you said that it didn't sound like Lyme since my IgG was negative.  Why would the IgM be positive in any way if they didn't find some kind of antibodies present for Lyme? And my ID did refer me to a neuro last year who performed an LP and EMG.  Both tests were basically normal.  After the LP, he said he could find nothing wrong and I went on my way.  At that point, my symptoms had pretty much gone away, so I shrugged my shoulders and went home.  Well, the symptoms are back with a couple more, so here I am, looking for answers.

[sllowe]

Hi there,

Welcome! YOu have been given excellent advice here, I just wanted to say how sorry I am for all you are going through. I strongly 2nd Deb and Audrey, especially where they say the ID doc should refer you along if he's exhausted his investigation. From what I understand it's not a given that Lyme would be found in your CSF, just like O-bands are not always present for MSers.

I know the accident was humiliating. I pray you get to someone willing to reach further into your body and find out what is going on.

We are more than willing to help you out and support you get through this phase.

Thanks for joining us,
Shell

[smercer2]

I went shopping with my husband earlier today.  I noticed when I was walking around the store that it felt like I was crooked.  Kind of like my upper body was leaning a little bit but  I was still walking straight.

I've been surfing the forum, but I can't find anyone else reporting anything similar.  Can anyone explain that one?

(I haven't, however, had any more accidents... yay me!)

[Audrey_M]

I read back over the threads in this post.

With your first WB test, where the IgG bands (older infection) came back positive and the IgM bands (recent infection) came back negative, I view that your ID specialist took a proactive course and prescribed abx in the event of a false test result.

Your repeat test result should have shown positive results (2 out of 3 reactive) in the IgM bands with a prior infection. The IgG bands can stay reactive for up to 6 months and it can take the IgM bands years to become non-reactive. There is no consensus in terms of how many years it may take.

That is why I said this does not sound like Lyme; the two test results, if they are in fact only positive in IgM on the first test and negative in both IgG and IgM on the second test, it would seem that you had a false positive on the first test for prior exposure.

I'm going to provide a link that explains the Lyme Western Blot test, just in case I mixed anything up that might cause confusion:

http://www.lymenet.de/labtests/brenner.htm


In addition, knowing people who have had Lyme Disease, the progression of your symptoms seems different, especially the twisting of your foot.

Have you seen a neurologist?

Audrey

[smercer2]

I have seen a neurologist.  When my 2nd series of Lyme tests came back negative, he referred me to one down the hall in his office.  The Neurologist did quite a few tests to include an EMG of the right arm and hand and LP which both came back normal. (Slightly elevated protein in the LP, but not enough to be significant.)  As to my foot, that only occurred in May/June for a couple of weeks.  I haven't had it cramp like that since.  Now it just kind of twitches occasionally.

Thanks for the link.  I've got it open now and will go through it this morning.

I have a call into the neurologist that I had previously seen.  I advised the nurse last Thursday that I wasn't available to come in until this week, so hopefully she will call me today with an appointment.  I'll update you when I have new info.  Thanks so much.

Sandy

[smercer2]

I went in this morning for an MRI of the C-spine with contrast.  They said the neuro would get the report early next week.  I guess I'll find out if anything is going on there later next week.  Just wanted to give an update.

[essdipity]

A normal EMG doesn't rule out MS. It's a test of the peripheral nervous system, whereas MS occurs in the central nervous system.

I hope you got a CD of your new MRI, and make sure you get a personal copy of the report. Keep records of all your visits and test results.

Good luck and keep us posted.

ess

[smercer2]

Thanks Ess,  I did not get a CD... didn't know you could, but I'll put in a request for everything next week.

[Deb61]

Thanks for the update!  I've been thinking about you, and I hope that they find an answer for you soon.  

Did your neurologist (or any other doctor) do a lot of testing for autoimmune disorders?  Sometimes a fals positive Western Blot test is found in people that have an autoimmune disorder like lupus.  Have you had a positive ANA test?  

Lupus and some other autoimmune disorders like Sjogren's can cause neurological symptoms.  Usually a neurologists rules out all of these diseases before considering MS, so my thought is that you had the tests already.  

[smercer2]

Hi Deb,

I was tested for everything last year.  Everything came back normal, including my thyroid.  I remember seeing the results and the ANA was negative. RA was even ruled out. They even tested me for Syphilllis (sp?), which, thankfully was negative too.  

My neck began aching about a week ago too, which is new.  I wonder if I've got a disc problem instead?  It doesn't really hurt... just a deep ache that is kind of hot feeling inside.  I keep wanting to rest my head on something to take the weight off my neck.  What's up with that?  I haven't even told the doc about that yet.  Hopefully, he'll call me to come in next week...

[Deb61]

You mentioned an MRI of your C-spine.  Have you had an MRI of your brain or T-spine?   If so, what was the strength of the machine?  Was MS protocol used?  

If you have a disc problem in your neck, it will most surely show up on the C-spine MRI.  I have bulging discs in my neck and it feels like what you've described.  

If you call and get your CD before your visit, you could find out earlier what's up with your neck; however, your neuro should go over the MRI with you.  He/she may have more to add.  

[smercer2]

I had an MRI of the brain last year, without contrast, when my symptoms initially began.  I didn't get a copy of the report, but the doc said there were no problems.  

I'm kind of a bonehead.  I had a ruptured disc in my neck back in 2007 and had surgery on it then.  I never considered that it may be a disc problem this time because the problem involved my entire right side, including my leg and both feet and I had no pain this time.  In 2007, the pain down my arm was intense.  It wasn't until my neck began aching earlier this week that I thought it may be a disc problem again.  The neuro had already ordered a c-spine MRI, so I thought I'd tell him about it when I go in to discuss the results.

What I don't understand is, if it is a disc problem in my c-spine, why the problems in my lower extremities?  It is just so odd.  If it is a disc issue, I'll find out next week.  If it is MS or something else, they will eventually find that as well.  I'm just not going to stress about it any longer though... hopefully anyway.  

[smercer2]

No call back from the neuro on my MRI results yet, but I picked them up today.  The MRI was to check for cervical spondylosis, according to the report.  The results shows pretty much everything is fine.  

It says, "The vertebral bodies are of normal height.  Anatomic alignment is maintained.  There are no focal areas of abnormal bone marrow signal intensity...The visualized portions of the spinal cord are of normal appearance and signal intensity...C5-C6 left dorsolateral discogenic/osteophytic complex causing minimal effacement of the left ventral aspect of the thecal sac and moderate reduction of the left foraminal diameter."  

Pretty much, I think this interprets to my neck is fine, but I have a little bit of arthritis that appears to affect the left side.  

My problem is that I'm having bigger issues with the right side, although both sides have tingling and numbness... even a slight pulling sensation in my right cheek from my ear to the corner of my mouth.

So now what do I do?  Should I wait to see if there are any changes?  I honestly just don't know at this point, but I don't want to make a big deal out of something that really isn't.  If it is something, it will progress, and then they'll figure out what it is, right?