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.

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

Wow Greta! I have read about families having MS so it's not unheard of. I hope the conversation with your brother goes well.

The good thing is you are all not symptomatic. I guess that's a blessing in disguise. (you know me, ever the optomist! You can smack me now!)

Let's hope you all stay that way. Maybe if you do decide to have a kid, Jim's genes will be stronger than yours! Ok ok, I will stop now!

It's the drugs...honest! You know I love you Gretata!

Other published examples of familial infection-
HERE is the Morrissey family- the Mom was MS type symptoms, daughter was movement disorder & seizures- 5 of 6 of the family infected-
http://www.geocities.com/HotSprings/...ersonal23.html

HERE is the Parrish family- 4 of 5 infected-
http://www.lymeneteurope.org/forum/v...php?f=10&t=144

HERE is the Frazier family- 4 of 5 members infected-
and the Mom would have been diagnosed MS had she not persevered-

EXCERPT:
My illness began with numbness and an array of other sensory disturbances. The numbness spread from my foot to most of my body including my face. Lyme ELISA titers were negative so, at this point, it was ruled out.

I was sent to a neurologist who did an MRI, ANA, and a lumbar puncture. The MRI was abnormal with diffuse periventricular white matter, my ANA was slightly positive for Lupus, and my spinal was positive for oliogoclonal banding and an elevated Igg synthesis rate suggestive of multiple sclerosis.

I was again told I did not have Lyme disease because the spinal tap would have been positive. My health continued to deteriorate. I cried uncontrollably for months. It was very hard on my entire family. I became nearly bed ridden with fatigue, it was difficult to walk, and I was unable to work.

I began doing extensive research into the field of Lyme disease and learned that all of my symptoms and lab results could be consistent with Neurologic Lyme. My family physician supported me in my belief, despite the fact that three neurologists felt it was probably MS.

http://www.lyme.org/faces/faces.html

just realized I forgot this which really shows the intergenerational aspect of familial Lyme disease- http://www.lyme.org/faces/ciasullo1.html

Marie Ciasullo, Fairfield County, Connecticut
She and her 3 kids all have Lyme and QUOTE:

Number of family members with LD: 4 immediate, 16 extended

My parents both have Lyme; two of my sisters have Lyme; one brother, one sister-in-law and one brother-in-law also have Lyme. Oh, and five nieces and nephews. We have all been diagnosed at different places, in different labs. This is so strange and so scary and oh-so sad.

Hi Sarah -
Wow! that was a lot of info, thanks for putting it all together for me! Unfortunately, I'm fairly sure that I can't blame this on lyme. My mom was dx'd 36 years ago, long before the advent of lyme disease. She had lesions and a positive LP. She definitely has MS.

I actually grew up in CT (birthplace of Lyme disease!). Had it at age 18. Was treated with abx within 3 weeks of the bite and had a full recovery. At 31 I had a positive MRI and a positive LP with plenty of O-bands to indicate demylination.

My brother may have had lyme disease as well. I'm not sure. He also showed lesions and had a positive LP.

The fact that we have 3 positive LPs as well as lesions leads me to believe that this is not a lyme disease issue.

Luckily for now, my brother and I are both infraclinical/subclinical since we haven't had exacerbations yet. Lucky us that our lesions are all silent, but it doesn't say much for the amount of brain we use

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

But Greta, he's so cute!

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

We should chat....