Lymie here checking in....Limbo Landers PLEASE READ

[carrie235]

Hi Everyone,

Just wanted to check-in and say "HI" and remind the Limbo Landers that if you haven't been checked for Lyme Disease, you might want to think about it.

I know there are new people posting on here all the time looking for answers, so quick update.

Thought I had MS for a year.  Had brain MRI 20+ lesions not typical for MS...loads of other tests all negative.  UCSF MS said this is NOT MS.  A year later, I get myself tested for Lyme through Igenex labs, with a postive test with a co-infection.  Started ABX and within one or two weeks, literally all my symptoms went away including the numbness which has never returned since starting abx.  My symptoms were:

Facial numbess/tingling
numbness in left foot
pulsating/vibrating feeling in left leg
Sudden onset of major anxiety
Buzzing in Scalp
Trembling in hands
Electric type shock feeling in right side (happened once, but made me hit the ceiling)

This list is only a partial list of my symptoms.  Lyme and MS symptoms mimic each other VERY closely.  If you are in limbo and have no diagosis, please get checked for Lyme Disease.

Also, note that I had a lumbar puncture and it was negative for Lyme.  Only 20% of people with Lyme show in their spinal fluid I've read.  My neuro asked me "if I had lyme disease" upon reviewing my MRI....  He was a younger doctor, so probably more up-to-date with regards to lyme disease.  Left untreated, lyme can cause many many problems.

Anyhow, I'm still on ABX (have been since Jan 2011).  I am doing SO MUCH better.  There is something called a "herx" reaction that people have when there is a large amount of die off of bacteria in the body. I do have occasional flairs of my leg pulsating feeling, but NOTHING like it was before meds.  I will probably be on ABX for at least a year or longer.  But, that's okay.  I know I'm getting better.

Also, you DO NOT have to have had the rash and many people with Lyme don't even realize they have been biten by a tick.  Ticks can be as small as the period at the end of this sentence.

Remember too.....you need to go to an LLMD (Lyme Literate MD) for accurate test reading.  My Igenex lab results went to my regular doctor who didn't know how to read them and told me my test was negative.  Finally, two months later, I looked at the test, and realized it was positive.  Igenex has a website.  You can google it.

I could go on and on, so if anyone has any questions, feel free to send me a message.

Take care,

Carrie

[addicted2harleys]

MissLaural and Sharon-

I would consider having the more accurate Lyme test.  Lyme is a definite MS mimic so it definitely needs to be ruled out.  Especially with you, Sharon, as you recall being bit by the tick.  

Consider contacting Carrie through a private message for more info.  She is very informative.  And she can guide you, if you decide to proceed with the test.  There is also a Lyme forum here on MedHelp that I am told is pretty good.  

JMHO. :)

Hugs,
Addi

[nrseprn41]

I posted a comment earlier re: my nerve biopsy results.  I totally have numbness in both feet with a host of other symptoms.  I just found out my nerve biopsy was negative for small fiber neuropathy.  How can this be.  Could it be Lyme.  I was tested with the traditional method and it was negative so the doctor passed it up.  I was bitten by a tick a few years ago.  Did not thinkj anything of it and never noticed a rash....????

sharon

[addicted2harleys]

I met a man yesterday in my pain management doctor office.  He had a very noticeable tremor in his hand.  He had 2 canes and a service dog named Murphy.  Murphy was a shelter dog saved by the needle, then trained for service.  He was very devoted to his owner and the center of attention at the dr office.  :)

Anyway, I was talking to the man and had asked him what services his dog provides for him.  He told me.  I also asked him what kind of problem he has.  Obviously the tremor, but he also has mobility problems, lung problems and incontinence.  

He told me that he had been dx'ed with MS 30 years ago.  Then, 2 years ago he was found to have Lymes.  He was misdx'ed with MS 30 years ago when he had actually had Lymes.  He also remembers getting bit by the tick, but he never got the bullseye.  

Just thought I would share this with ya'all.
Addi

[MissLauraI]

Do you have to ask for a Lyme disease test or would a doctor do that just to rule it out? Would that be part of why a doctor would do an LP?

[sllowe]

Hi Carrie!

I'm so glad you posted this reminder! Geez! I forgot you had 20+ lesions too! Your journey is all the more reason for everyone in limbo to not give up hope on identifying a cause.

Takes not only you, but the docs to not give up.

So glad to hear you are doing much better than before.
-Shell

[Karen99]

Thanks for sharing.  Glad you are feeling better and got to the bottom of the cause of your symptoms.

Another good example why patients should get copies of all medical tests, etc.

[carrie235]

http://www.explorebaltimorecounty.com/community/113030/community-rallies-around-victim-lyme-disease/

This is a great article about someone who was told it was MS but found out he has Lyme.