Hi. Can someone help me figure this out??
 

Hi,
I'm new to this forum but I have a question for anyone out there with MS. My 15yo daughter has just been told she has MS in her brain stem. Her history includes CNS Lyme disease, Babesia, Bartonella, Epilepsy, Ventricular Tachycardia to name a few.

She's had an abnormal BAER test, nystagmus, ataxia and her neurologist feels it is in the brain stem. We are very scared. Her neuro. and her Lyme doc want her to get IVIG, but we are in the process for that.

She has a central line and is on IV Rocephin, IV Zithromax, Keppra, Lamictal, Zonergran, Atenolol and a few other meds daily. All as a result of the Lyme infection not diagnosed and allowed to run rampant in her body since birth.

We need some input. Thanks. Lymiegal

Hi Lymiegal
Welcome to the group. I'm sorry I don't have any help for you. Except to say have you posted on the Lyme Disease board: http://neurotalk.psychcentral.com/forum91.html

There are some theories that MS and Lyme are connected in some way. You may want to do a search, for Lyme, on this board also, as it came up earlier this year.

And weekend are much less busy here, but will really pick up again during the week. Don't worry if you don't get a quick answer. I'm sure someone will be along.

HTH:hug:

I'm of the opinion that Lyme and MS are probably both related to each other. I've had a couple of Western Blot tests for Lyme, along with the unreliable ELISA test for Lyme. All of them came back with a couple of bands of Lyme specific bacteria...just never enough bands of bacteria to satisfy the CDC's criteria for a positive Lyme test result.

I do believe I have MS, but have just never felt that any of the doctors that I've seen have taken me seriously about my suspicions that it could be Lyme. (I've had 3 or 4 known tick bites, two of them associated with an EM-like rash) It's just my intense curiousity that keeps me wondering about it. Even if this is Lyme and not MS, I'm pretty sure that I'm stuck with all the neurological crap anyways...so it's not like things would change for me even if I could prove it was Lyme.

My regular doctor has told me that when I can afford it, that he'll do a blood draw for me to get tested for all the Lyme co-infections to send to an independent lab. (test costs more than $600 and isnt covered by my insurance) At least he's willing to take me seriously on that. I just cant afford the test yet.

Hopefully you can get the problems that your daughter has taken care of. I hope that all the antibiotics work and get rid of all the Lyme bacterias and that she wont have any lingering neurological or other health problems.

I think it's strange that the medical community will not seem to take Lyme disease seriously. I've heard of people who have raging, obvious cases of Lyme disease...the bacterias are practically waving hello to the doctors on the lab tests and the doctors couldnt see it.

I hope her doctors can help your daughter get better soon.

Just want to say my thoughts and prayers are with you. :smileypray:

You will find many caring folks here at NT that will be of great help and support to you. Hang in there! :hug:

~Friend

What kind of input are you looking for Lymiegirl . . . ideas on meds for MS? :confused:

I don't know of anyone who has been dx with both Lyme and MS, although there has always been talk about those two conditions potenitally being connected.

Are you comfortable with the experience level of her medical professionals? Have you sought a second opinion on the accuracy of these two dx? Was she tested for Lyme in the ONLY lab I know of (in California) which produces ACCURATE Lyme dx?

I am so very sorry to hear of your young daughter's health challenges. :( You must be devastated, and she must be very disheartened as well. My thoughts and prayers go out to your family.

Cherie

Hi again Lymiegal :)

I copied your post over here from the New Members intro forum as I know our MS members have a wealth of info and experience and support to offer you.:grouphug:

here is also a post from our Lyme Forum where it is claimed that sometimes Lyme can MIMIC Ms:confused:
http://neurotalk.psychcentral.com/sh...ad.php?t=25551

hoping you find answers to help your precious daughter.

with prayers lifted for her and your whole family
Cheri

Thanks,
We did get our testing through Igenex in CA (we've had 7-8 CDC and Igenex positive Western Blots - she gets tested every 3 months) and have had both of her doctors agree that the MS appears to be in her brain stem. Actually, Lyme and MS are very intertwined as they are both demylineating and look the same on MRI. I was hoping to find anyone else that has MS in the brain stem. Thanks, Lymiegal

Hey Cheri,
Do you go to CCO? =)

That's me :D

good to see you here :hug: and do keep checking for the replies as it does slow down here over weekend but gets busier during week.



we are praying for your daughter and whole family
:grouphug:

I'm not sure what that is, so I don't think so. :confused: :p
I have been wanting to get tested for Lyme at that place in CA (I think it is the one you mentioned), but haven't gotten around to it yet.

From what I've heard, a Lyme disease dx can rather dubious, even in the best of labs. I have heard of people who have had their dx changed from Lyme to MS, and I just remembered that one person I've talked to who had both (does anyone know if BadKitty is still around the forums?).

Lesions can be very difficult to spot on a MRI, but there are definitely some people around here who have them in the brainstem. I might, based on the symptoms in my last attack, but I haven't had a MRI in years.

What do you want to know about brainstem lesions?

Cherie

Hi Cherie

LOL Lymiegal was referring to me there:D same name confusion ;)

we know each other, and I am the one who got a message to her via CCO to check here for help re info on MS in brainstem

I've had lyme (1989) and dx'd with MS in 200o. I personally don't think they're related other than the fact that they both cause similar neurological symptoms.

I was an easy dx and was treated within about 3 weeks of the bite. Never had another issue afterwards. Wish I could provide you some assistance.

Is there someway for the docs to know when the lyme has truly been treated and eradicated so that you can tell where the MS starts?

Hi Lymiegal, Welcome to Neurotalk and the MS forum. I second the others about the Lyme issues and getting that under control. I know that the infection from the Lyme can cause MS to be more symptomatic as does any infection so maybe getting the Lyme under control/or eradicated might give you daughter a chance to get a grip on the rest of the her symptoms.

In addition, it might give the docs a chance to treat, or maybe get a better handle on what type of symptoms she's having with her MS.

You might want to check out the National MS Society's website for symptoms and treatment. www.nmss.org They have some good info for the newly diagnoses. There's a sticky at the top of the page that also has some good info that you might want to browse through.

Take it one step at a time and don't overdose on information.

Ask questions, we are here to help you and your daughter. It's a lot to handle all at once! :hug:

i can't help you with info but wanted you to know that i read your post and want to welcome you.

i'm sorry you're family is dealing with so much.

best,

hi again Lymiegal
 

I was looking thru the Lesion Locations and Symptoms sticky thread here and noticed this, so hope it can be helpful to you.

http://neurotalk.psychcentral.com/thread3436.html

Praying today has been a restful one for your daughter and family. :hug:
Cheri

My 6 yr old daughter had her first attack in Jan 2006 at age 4. She had issues with lesions in the brain stem and other places. At the time she was diagnosed with ADEM or acute disseminating encephalomyelitis. She had another attack in January of this year. We are now waiting on specialized spinal taps to see if it is MS. She has received many doses of IVIG over the past 2 years. Feel free to ask me more specific questions if you would like.

Kaylee has a care page at carepages.com. You can search for her under ms or adem or her name if you would like to read more about her story.

Take care,
Lisa:hug:

I wish I had some information to share but I did want to send my best wishes and prayers. I have always felt bad for the "young ones" meaning the kids who were diagnosed in their 20s so I absolutely can not imagine your poor little ones having to deal with these kind of problems. :(