I got a very strange email from my brother last night. Apparently he was dx'd in Nov by accident. I was accidentally dx'd after going to the doc with headaches. His story is even weirder. His BIL works at a hospital giving CT scans. He's learning how to do MRIs and asked my brother to come in so he could practice on him. Turns out, he has a brain full of lesions too. No symptoms or exacerbations either.

That makes my mom, me, now my brother (all dx'd at age 31). Then my sister calls and tells me it's time for her to get an MRI. Apparently, 20 years ago, she went for a CT scan because of an injury. She remembers seeing the report which said "multiple plaques". She thought that was odd, since MS is the only thing she knew of that caused plaques, but noone ever mentioned it, so she just forgot about it. She has no neuro issues, but now she's concerned too.

I had just about convinced myself that it would be ok to try to have a kid. Now that it appears that my family hit the MS genetic jackpot, it seems awfully selfish and not terribly wise.

My head is still kind of reeling. I haven't talked to my brother yet, I'll probably call tonight. We don't get along and speak only at funerals and weddings. Should be interesting.

Wow, Greta, that's just awful. I was going to say..an e-mail to tell you!! Nothing like a little MS to bring the family together. Who knows. Maybe thats God's way?

My DD also has MS and it never scared either of us away from having Children. She has 4 natural children...the last three, after being DX. There are worse things that can happen than MS and it's all a crapshoot. Have your Kiddles, Sweety.

It was the weidest email. It was written to my two sisters and I from the point of view that he was only telling us so that we could go and get ourselves tested, but not to give him any advice at all since he had a good neuro. Not even a mention of the fact that I already have MS, which he's known from the start. It was as if I received a medical bulletin from a stranger. I was so angry after getting it, that I didn't bother to call. Can you tell how much I have come to dislike my brother?

Lord help us if Jim's genes are stronger. I don't have enough patience for that!

Sad thing is that I asked today to have my profile and all my posts deleted across the pond. I know that sooner or later he'll show up there, if he hasn't already, and I don't need him reading my posts. Especially the recent one where I talked about what a selfish jerk he was for not visiting my mom! It was a nice run there anyways. I think me and my Gretatas are safe here

You are misinformed. Lyme disease has been found in hundreds of year old ticks in the British Museum. It has been found in a Lousiana swamp corpse (a child) from 1000 years back that was well-preserved. All documented, look on pubmed for yourself or if you want me to post those I can.
Lyme disease has been here all along. There IS NO recent advent of LYme disease, just people catching on that their Grandmas Rheumatic Fever or Uncles MS was Lyme all along.
Many people with LYme have had LPs diagnosed MS, that is not a differential. There IS no differential between Lyme disease and MS, none.
I am the support group facilitator for SC County and we have had over a dozen MS Lymies in our local group. MANY had no positive Lyme tests or history of rash. ALl were responsive to treatment.
Take care,
Sarah Olson

I'm not too sure how much swearing Doc John allows but let's just say I would like to say a whole lot of those words.

I keep trying to type and I keep deleting it - I just can't get it right. Just know I care and I'm sorry and sometimes family sucks.

Greta,
I'm terribly sorry to hear about your brother. I must say that is an odd way to find out, but we all have our family "stuff" to deal with. I wouldn't let it stop me from having a baby. Unfortunately, physiologically, I haven't been able to hold onto a pregnancy. I don't think it has a thing to do with the MS.

Sarah,
I don't mean to get pushy, but if what you are saying is indeed true, you and several Neurologists would be VERY WEALTHY and FAMOUS!!! The symptoms of MS and Lyme's may overlap, however it is NOT the same disease.

But Greta, he's so cute!

All kidding aside, family dynamics are weird! Maybe we are related, huh?

We should chat....

WOW! Greta,

What a way to find you have MS and to have such a strong family history of MS. It was only 8 years ago that neuros universally thought there was NO linkage of MS in families. Surprise! Another revelation we patients taught the almighty neuro community.

I don't think you should worry about having children and them being affected by the MS gene. Probably by the time they would even get any type of diagnosis there very well be a cure for it through stem cell research or genetic engineering. Don't let this stop you from the joy of having children. They are such a blessing..................and challenge!

Hi Greta,

I'm sorry your brother is the way that he is... But you're fabulous. Sorry that MS seems to be running in your family.

That being said, I think you and your DH would be fabulous parents and hope you can have a baby. The treatment for MS has advanced so much, and you've done very well with it so far not having any attacks and such.

Whatever happens, I wish you the best, and try not to fret over your NSDB (not so dear brother). Sometimes I think there's one in every family.

Dear Greta,

You may not know this, but it is very common for whole or partial families to come down with Lyme disease for 2 reasons- 1. shared geography which includes infected tick territory and 2. tissue types

There are certain tissue types associated with Lyme disease, one is HLADR4.
NOrmal people can get bitten and be fine, but if you are HLA DR4 you ARE going to get very sick. Tissue types are genetic- they RUN IN FAMILIES- thus families often have multiple members with the disease. Another haplotype is the tissue type associated with NARCOLEPSY. If you have ever been told you have the narcolepsy gene or tissue type there is a tie-in with chronic Lyme disease.

This is why oyu get people saying, 'Oh, I've been bitten by dozens of ticks and I'm fine." If you are not a susceptible tissue type, many peoples bodies can successfully fight off Lyme with their immune systems. But if you are a susceptible tissue type, you are GOING to get very sick.

You may be unaware that there is no Differential Diagnosis between Lyme & MS. There is literally not a whit of difference betwixt them. If you so a search at Pubmed you can find MRI advisories which say the same thing. Lyme causes brain lesions. LYme is often blood and spinal tap negative in neuro patients. There is documentation supporting every assertion I am making here. Unfortunately, MOST neurologists do now know SQUAT about TBDs and genuinely go by blood tests and spinal taps.

You, your Mom & your brother having Lyme makes it MORE likely than the average MS patient that you actually have Lyme disease. I would find an LLMD and get evaluated. Lyme can be put into full remission.

I am the support group leader for Santa CRuz County, CA, which has the highest Lyme infection rate in all of California. My older daughter also got
Lyme- and she is in full remission. I had MS, Parkie & ALS symptoms, a real neuro mutt, and am 100% symptom free today.

HERE is the true story of a man who got Lyme and then realized that his MOM's Multiple Sclerosis was actually Lyme disease:

http://www.geocities.com/HotSprings/...ersonal19.html

Quote:"One evening, I came home to find my parents both taken by emotion. After asking what was wrong, she told me that the antibiotics were helping her. Throughout the fifteen-year battle to fight her disease, not once did anything help her. After many months on antibiotics, she has begun to move her toes and fingers, something she had lost the ability to do many years ago."

HERE is the true story of a guy who went deer hunting with his cousin, both got tick bites, and they both got diagnosed Multiple Sclerosis within a short time frame of each other, quote,

"Two first cousins diagnosed with MS within two weeks"

& his Uncle began showing signs as well-:
http://www.geocities.com/HotSprings/...personal9.html


Here is Megan Blewetts (of Harvard) Geostatistical Analysis of
Multiple Sclerosis Mortality & Lyme Mortality, just scroll down, this is a visual, and LOOK at the maps, just LOOK:

http://www.canlyme.com/megan_geostat...analysis2.html

In our support group we have had two-fold experience with MS. We have Lyme patients who come in and THEN develop MS after tick bite and we have MS patients, often with no known tick bite history, who come in to be treated for Lyme. We have had multiple people have brain lesions, plaques, go AWAY with longterm IV Rocephin. I myself was on IV Rocephin for 9 months with no gains until the 7th month. Now I am like normal. I was no longer able to walk because I lost my blance, had progressive weakness leading with my left side, and progressive numbness going upward to my calves, and slurred, and had claw hand and chorea with athetosis. In our support group we have had 3 people lose wheelchairs and one person lose a
cane. That is the NICE thing about Lyme- you can get SO much better.

Again, you are MORE LIKELY to have Lyme related MS than the average person in this forum because of multiple family members afflicted!!! So this
diagnosis of your brother could be a blessing in disguise.

Lyme is in almost every single state- and it is epidemic in California- New Jersey- CT- RI- NY, etc. The main test strain is FROM the Shelter Island, New York strain of this tiny microbe, so if you have another strain that is variant enough- like the borrelia bissetti strain which is in CHICAGO and CALIFORNIA, you will test negative, or from WISCONSIN where they have the Kettle Forest strain- which will test negative to standard Lyme tests.

ALSO, there is a sex bias in the Western Blot antibody test. The Dearborn criteria for CDC surveillance have a sex bias- the average man has 6 bands of reactivity, the average woman has 4- adn the CDC set the standard at- 5!!!
So the average woman is more likely to test negative by reporting standards than the average man.

39 kda is Lyme specific so if you have THAT band you have been exposed to Lyme disease, period. You don't need 5 bands if you have 39 kda. So anyone who has ever had a WB, ask for the bands, not just for CDC positive or not- the CDC positive is for reporting standards, not for diagnosis.
ANYWAY,
My phone number is 1-831-662-2895 if you ever want to call and talk. And that goes for anyone- just make sure it is daylight West Coast hours before
7 pm because that's when I start Bedtime Rituals with the kids-
Best wishes,
Sarah