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Could it be lyme (DX with MS)

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Posted 7/13/2012 4:32 PM (GMT 0)
Cliffs (or read the story)

- Numbness in body

- Double vision

- DX with MS

- Been taking meds

- No issues since

So in August of 2011 year my forearm and shoulder went numb.  Went to the DR and thought I had a pinched nerve.

A week later my knee went numb

Went in for a MRI and found lesions.

1 week later my right knee and arm where completly numb.

With to the neuro and was told I have 16 lesions in my brain.

Week later my knee and arms feel better

Next week I got DBL vision.

1 week that went away.

I felt great after that but was pretty tired.

Took about 2-3 months to get 100% again.

Ever since then I have had no big issues.

My main thing is my hands feel tight and tired all the time. Not sure if its from working out or maybe the MS?

So my question is do you think this is MS or is it symtoms of Lyme as well?

Sometime I really don't feel I have MS.  I havent seen the DR since January and he couldnt beleive im 100% due to how many lesions I have.

throughout the year I have gotten 6 consusions that I know of as well.  2 of them severe.

I did get a 2nd opinion but he just looked at my MRIs and said "yup its MS". Not being judgemental but they where both forgein drs.  All  his assitant told me was to take my meds otherwise I will be basically paralized within 20 years.

 

Posted 7/13/2012 9:15 PM (GMT 0)
Well as you may know, many people with lyme are first misdiagnosed MS. The reason being that the symptoms do mimic each other. Also, lyme does cause lesions on the brain. I was told I had "multiple" whatever that means.

There is no way for us to know if it is MS or lyme other than to tell you that the symptoms are similar. Have you ever had a proper lyme test? or do you remember a tick bite at all?
Posted 7/13/2012 11:13 PM (GMT 0)
I had a proper lyme test that came back negative for everything except band 23. however, i did pay $400 this week to have a blood smear done and they send you a picture of your blood cells and mine clearly had infection in it. you can see it as clear as day as the bacteria stain blue and the blood cells stain red. i've been investigating my symptoms for 2 1/2 mos. and pretty much had doctors tell me since i had anxiety and clean MRI's that it's just my anxiety. I can't even tell you the wave of redemption that came over me today! if you have money, it's worth it to have specialty testing at independent labs. i never would have done it if a nurse practitioner i talked to suggested i do it.
Posted 7/14/2012 12:57 AM (GMT 0)
Shabby: is the test you are talking about the one through Advanced Labs? I am awaiting the results of my test.
Posted 7/14/2012 4:14 PM (GMT 0)
I think band 23 is pretty significant for lyme. I had that and one other--41 i think but that was enough evidence for me.

I'm glad you're looking into it. I have two friends with MS and i can't talk lyme to them--they just believe their doctors and not someone with "out of the box" medical information.

I think it will take a decade before MS doctors ALL start thinking about lyme. They need education!
Posted 7/16/2012 1:39 PM (GMT 0)
Ill try to anwser all the things people said.

I did have blood work done.  I do not know what the lyme test was but they told me I was negative.    I also have low Vit D which is specific to MS not sure if it is lyme.

I live in a wood and regularly get ticks on me.  There not always stuck but at times they are.

Heck I have already had two this year.

When I told my DR I live in a tick infested woods he just kind of blew me off.

What sucks is people treat me like a guy that addicted to crack.

They keep telling me to just accept the fact I have MS and deal to live with it. 

I have zero issues right now, so im not depressed and trying to say I don't have it.  I just don't want to take this expensive medication if I do not have too.

Posted 7/16/2012 2:27 PM (GMT 0)
Is there any specific tests I should look at? I seen something where I can order a test?

I was looking at the rashes and was wondering if they can come and go?
Posted 7/16/2012 8:31 PM (GMT 0)
YES!! The rashes with these infections do come and go! "Google" Lyme rash, Bartonella rash, Babesia rash and you will see all kinds of rashes!

The tests that you would want to have done would best be done by Igenex Labs. There is a link to their webpage in the "New to Lyme" thread. Once there, you will see quite a few options for testing, but there is information on the site to help you determine which tests would best for your situation. Your doctor doesn't have to be the one to order these tests, but you will need somewhere that will draw your blood for you and send it to Igenex.

The other thing you should know is that the current testing methods for tick-borne infections leave a lot to be desired still. Up to 60% of negative test results are wrong. Then there's the issue that you have to have someone that really knows what they are looking for when reading the test results. Most doctors and lab techs have no clue how to properly read a Western Blot for Lyme.

The other thing with any blood tests for these infections is that they don't look for very many strains of each infection. There are over 300 strains of Lyme worldwide and over 100 here in the US and Bartonella has 20 some strains. The tests only look for three or four strains, so anyone who has one of those other strains would just be out of luck as far as these tests go.

You are being smart searching to find out if the MS is a good diagnosis or not - I too had docs that tried to diagnose me with MS, but the symptoms just weren't matching up with all that I had going on, so I kept looking for what was really happening.
Posted 7/17/2012 12:04 PM (GMT 0)
I think im going to go here

http://www.nhim.us/

I looked up the rashes and some of them look like what I have.  But I workout, work out side in the heat ect.  I think (still do) that its jock itch (or whatever its called)  It comes and goes sometimes.  It really bad if I have been sweating from 6am - 10pm.     But I do get the rash down my leg sometimes.

I dont care if I have MS (ill live with it) I just want to make sure that I do not have something else. I would hate for 10 years down the road to have lyme and that I could have beat it.

 My only other thing is I took IV steroid and didn't feel any diffrent.  #1 - I felt the same as when I went in.  NEver felt better or worse.  Iheard Lyme will get worse.  Now I did take the pill steroids and had to stop taking them because I felt funny.

I also read the lesions will look diffrent.  My DR says it looks like MS...so? redface

Post Edited (ffjosh) : 7/17/2012 6:16:28 AM (GMT-6)

Posted 7/18/2012 11:48 AM (GMT 0)
I was told i had MS by my doctors and before they even took an MRI. I was sure I had lyme so I did no more and went to see a Lyme literate doctor. He diagnosed me initially on my symptoms and then sent my blood off to America (im from uk) the test came back positive and now im also being diagnose with bartonella. I would suggest if you really are thinking it could be lyme just go to http://www.nhim.us/ like you said and they will tell you if you have it or not.
Good luck
Posted 7/18/2012 4:15 PM (GMT 0)
The others have all given a lot of great insight - I'm just trying to think of anything else that might be helpful in solving this mystery. Have you taken antibiotics recently for anything? Sometimes people with "mystery illnesses" clue in at this point - they realize that they always "herx" after taking abx for something mild (because it'd actually be killing off a much bigger bacterial load with the lyme and/or co-infection).

What about fevers? Do you know if they're typically associated with MS as well as lyme? Many of us have high or low grade fevers almost constantly, though I have heard this can happen with autoimmune issues as well.

I think your best bet is to see a LLMD, and, maybe stop seeing a doctor who is telling you your symptoms are anxiety because that's really not helpful. Please let us know if you need help locating a LLMD.
Posted 7/18/2012 4:42 PM (GMT 0)
I have no fever but I do get anxiety which I have never remember having before.

I am pretty active and do many activities (golf being #1) and I play in leagues. Im not too bad at that but I do get very nervouse and almost feel sick sometimes. I have never had that before.

I started doing strong man compititions and wow i felt funny. I was so nervouse I was almost shaking. Even though inside I did not feel nervous at all. It was a weird feeling. Guessing thats part of anxiety?
Posted 7/18/2012 5:05 PM (GMT 0)
Anxiety seems to be the big red flag for these kinds of infections. Whether it's someone who was previously healthy or someone who's been sick all along but then just gets much worse out of nowhere - I see the same common thread - brand new and often severe anxiety, tingling/numbness, etc. I'm kind of on a person quest to figure out exactly what the culprit is, so far it seems more like a co-infection with bartonella.
Posted 7/19/2012 1:23 PM (GMT 0)
thanks for the information.
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