LymeNet Flash: Newbie with spinal lesions and questions

This is topic Newbie with spinal lesions and questions in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/35822

Posted by barbd (Member # 7591) on :

Hi everybody,
I am new here. Last fall, I was diagnosed with Lyme disease. Symptoms began in June, tingling in my hands and feet when I bent my neck. My Mom was dying from Cancer, so I assumed stress. Then, I finally went to my doc in Oct, he sent me for MRI, showed two lesions in my c-spine, and one on brain. Sent me to neurologist for MS diagnosis, and lyme disease was a second possibility, so he also ordered a lyme test. Lyme was positive for a current infection (IGM). I was treated with 28 days IV ceftriaxone, in November, and symptoms slowly subsided, and by Feb were totally gone. Well, a recent MRI shows lesions are still there, but slightly smaller, and a bit of tingling and joint pain has returned. Neurologist says MS, but I think he's wrong. I know I need to find a LLMD, so I'll pursue that through my local support group, but I wanted your opinions. If my WB lyme test was positive, and my spinal tap showed elevated white blood cells, then that's definitely lyme, right? Is 28 days IV antibiotic enough? Could the symptoms be returning? Why is the neurologist so quick to say MS; I have no new lesions. P.S. I don't really like him....very arrogant....I need another neurologist anyway if I have MS....I can't deal with him.

Thanks in advance for your help.

Posted by bigmamma (Member # 7181) on :

Hello Barbd and Welcome to Lymenet!

I am not a doctor so I do not know about the spinal lesions, but I do know that lesions in the brain CAN be from Lyme. I have white matter lesions in my brain and many others here do too.

It sounds like you are on the right track with looking for a LLMD to treat you for Lyme. It is likely that even though you began to feel better after the IV antibiotics, not ALL of the borrellia bacteria were killed and you now have a return of your symptoms.

If your Western Blot showed IGM positive then yes, you have Lyme disease. You will want to read the newbie links about testing.

There are many posts here about Lyme vs. MS. The joint pain and tingling you are experiencing are very common symptoms of Lyme, but an LLMD can help you sort all of your symptoms out and rule out other possible causes like MS, etc.

You will find this to be a wonderful resource so get started reading the newbie links. We're glad you found Lymenet!

------------------

Posted by shassler64 (Member # 3479) on :

Hi!
Find a LLMD ASAP.

Lesions on the brain are caused by lyme and if you have been infected for quite a while 28 days of rocephin is usually not anywhere near enough.

Lots of people have been diagnosed with MS and thus don't get treatment and it makes it all worse.Ignose the MS stuff and follow your own feelings about this as I think you are right.

I was untreated for 6 months and am now at about 2 and a half years abx and still using.I am extreme though.

You are at the right place here.Sorry you are unwell but this is where you will find out everything you need to know.

I have put up the posts for new members .Have a look,you will finds heaps of info there.

Take care and welcome from Downunder(lonely Aussie lymie),Sue.

Posted by dontlikeliver (Member # 4749) on :

Hi there,

Glad you're smarter than your neuro. Sounds like he's putting two and two together and getting five.

I also had L'hermittes sign (which is either a lightning type pain or tingling when you bend head forward) a few years ago and was also in the possible MS 'box'. Of course, it was Lyme disease all along.

Sounds as if your treatment was stopped a bit prematurely.

DLL

Posted by bg (Member # 46416) on :

Barb,

Welcome to this 24/7 educational & support group board!

Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Tree constantly adds to the links!

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!

Bettyg, Iowa .... not a dr.

Posted by janet thomas (Member # 7122) on :

barbd

we could help you more if you showed your state or country and included an email address

click on profile to chane your info

janet

Posted by janet thomas (Member # 7122) on :

Perhaps another Western blot would show that you still have IgM antibodies-always get a copy for yourself

You can check your symptoms at www.canlyme.com

Sometimes it may take weeks or months to get a LLMD appt-perhaps your primary would prescribe doxycycline in the meantime

You may wish to look at the treatment guidelines at www.ilads.org