My brother has MS
 

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.:eek: 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.

:hug::hug:

regarding your brother-
 

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! :hug:

p.s.
 

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

Last postscript-
 

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 :wink:

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 :)

Greta-
 

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....;)

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.

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!:rolleyes:

Hi Greta,

I'm sorry your brother is the way that he is... But you're fabulous. :hug: 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.

Hi Greta, It seems that there is one in every family that causes problems.
Sorry to hear that he has ms. Would not wish that on anyone no matter what their attitudes are.

Don't let family matters and the ms stop you from having children.

I have two wonderful children. There are so many women out there that
have ms and they went and had children. That is the greatest gift that God
can give to you. There are a couple of relatives in my family that have ms.

That did not stop us from having children. Go for it. It will make you and your husband two very happy people.

Joyce :hug:

Greta & sideways to Chris-
 

Greta, if you grew up in CT and HAD Lyme and now have MS I would bet my life you still have Lyme. Seriously. We have had so many people come to our support group with tick bites who went on to develop MS. And they got better with longterm IV Rocephin. Lyme tends to go into REMISSION, not cure. It OFTEN comes back in a later stage- that is why they say "Tertiary Lyme disease" or "secondary stage Lyme". Secondary stage Lyme tends to be firbomyalgia or CFS. Tertiary can be MS. It often goes away completely and comes back in a later, more serious manifestation.

Sideways to Chris, nope, I will never be wealthy. When I did have money, I gave it all away!*)!*! I don't want to be wealthy- on the other hand, would be nice not to be poor but that's ok, too, I am rich with friends and life. And cats. And a pygmy goat*)! And human kids, two girls, Evan & Isadora*_!!

Anyway, I know, sounds like I am a crazy Lymie. That's okay. This one neurologist Patricia Coyle once told a MS Lymie acquaintance of mine,

"The only differential between Lyme & MS is response to treatment."

And since the insurance company standard treatment is 30 days, I would have been diagnsoed MS or Parkinsons I am sure! Because I did not respond to Lyme treatemtn until 18 months in!!! 1 year of orals- and 9 months of IV total- but thank god I hung in there because I am 100% symptom free today. (And let me say that Parkinsons is rarely rarely Lyme, I just happen to be one of the lucky (not!) 2% of Lymies with Parkinsonian features).

There is an investigation by CT Attorney General Richard Blumenthal into a cover-up by mainstream researchers of the true nature of Lyme. Sounds Plum island, I know, but it's true. Do a Google news search with "Richard Blumenthal" and "Lyme disease" if you doubt me*)!!

Anyway, it's a paradigm shift. I know this young Lymie activist named Victoria, she is only 15 (or 16? 15 I think!) and has the seizures version of Lyme, and she wrote to me once, "It is not a question of IF, it is a question of WHEN." It will happen. I know, I sound preposterous. I don't think ALL other diseases are often Lyme at all, but MS, yes, I do. Based on being a support group leader for 8 years now and having multiple people get Lyme and then get MS and then get betetr with IV abx, and we have a local primary care doc, bless him, who rediagnoses his MS patients as Lyme, and they have gotten better, too!

This study by
Brorson & Brorson
found spirochetal cysts in
10 out of 10 MS patients-

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

This study also shows a strong link in MS patients:
http://www.aaem.pl/pdf/aaem0024.htm

There are many many abstracts that show they are the same on MRI. And Lyme is negative 80% of the time in LPs.

http://www.ncbi.nlm.nih.gov/pubmed/9...ubmed_RVDocSum

QUOTE:
It is widely accepted that magnetic resonance imaging (MRI) findings are not totally specific for the diagnosis of multiple sclerosis. White matter lesions that mimic those of multiple sclerosis may be detected in both normal volunteers and patients harbouring different diseases. Virtually all the characteristic features of multiple sclerosis are sometimes encountered in other conditions affecting predominantly the white matter. Different conditions such as vasculitis, subcortical atherosclerotic leukoencephalopathy, Lyme disease, or acute disseminated encephalomyelitis can be virtually indistinguishable from multiple sclerosis on conventional MR images. UNQUOTE

Here's why Lyme is negative in spinals- because it goes into cystic form
which reads as negative, does not react same way with fluids-

http://www.ncbi.nlm.nih.gov/pubmed/9...ubmed_RVDocSum

ANyway, thank you for not being mean although we disagree. There is technically no difference between MS & Lyme. There is more than crossover, there is identical manifestation, virtually not a single thing MS does that Lyme doesn't. If you go to this page and look at the maps, you will notice
there is something VERY interesting about them- these are the Lyme maps of mortality- Lyme deaths- and the MS maps- of MS deaths- please, anyone here can go ahead and say, "Sarah, you are a whacko Lymie!" but FIRST
please, pleease, pleeeease, just GO HERE and LOOK at the MAPS!!!! Just LOOK at the maps!!! Please!!! Go to this link & scroll down & just LOOK!!!

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

Then you can see why I think what I do, ok? Seriously!!! Megan Blewett is at Harvard and a great researcher and I have a lot of respect for her work.

And lastly, look at this poor guy!!! I was searching the old John Hopkins autopsy database and came across this guy- just 40 years old!!! You think he died of MS, fine, but every single thing he had could have been Lyme-
and he would have lived!!! He would have lived. He had POSITIVE Lyme serology and it was ignored. He would have lived.
http://www.angelfire.com/planet/lymedisease/2/7.html

My mainstream docs were letting me get progressively weaker with "a multi-system progressive neurological disease triggered by post Lyme Syndrome" as they put it. They let me devleop a movement disorder, chorea with athetosis.
They let me get IBS and FMS and weaker and fall. They let me get numb from my knees down to where I could not feel my feet!!! And that all went away with Lyme treatment- they could have helped me- but they were stuck in their way of thinking-

Greta- I would really urge you to see an LLMD, a Lyme Literate MD!!!
Seriously,
Sincerely,
Sarah

Hi Gret~~~ Yikes, that's disturbing news. Too bad your bro didn't have the you know what's to call you all in person. Just think of how much help you could have been to him.

I'm just glad that you are doing ok. Besides, WE is your family!!

That's not a bet I want to win!;)


that's ok - you sound like a really nice crazy person:D


This is why I don't really have much doubt Sarah, you see, I responded brilliantly to treatment with interferon. If it were lyme causing lesions and O-bands in my spinal fluid, an interferon would do nothing. I started a DMD almost 5 years ago and since then, there have been no changes to my MRI (except some lesions disappearing), no enhancements, no exacerbations, no symptoms, no nothing. I don't consider it a coincidence that my MRI stopped changing as soon as I started an interferon. Additionally, I changed my diet to one advocated for MS, and I believe that's helped to slow it down as well. In truth, I've never actually had an MS symptom. My lesions are in silent parts of the brain.

When I was treated for Lyme 18 years ago, it was figured out within 3 weeks of getting the bite (yes, I know exactly when and where I picked up a tick even without getting a bullseye). They treated me with abx for 3 weeks and after recovering, I've never had a problem since. I was lucky that it was figured out so quickly and treated.

I would kill to have lyme instead. I would love to take some abx and never have to worry about MS again. Unfortunately, the facts don't support lyme for me. I know you mean well, but some people really do have MS.

Greta, You have never had an MS symptom? Wow, that's amazing. What sent you to the Doc to be tested, in the first place?

You are a true testimonial for early, early treatment..:)

She wanted to be like Laurel and Me! LOL!

:p

don't listen to flygirl - she's high on meds :D


I went in to the doc because I was having headaches that wouldn't go away for weeks at a time. I thought it was related to a sleep problem I was having - he agreed, gave me some meds and said lets run an MRI just to make sure you don't have a brain tumor.

Turns out I didn't have a brain tumor.:rolleyes:I went back to the neuro 3 months later for a refill and to tell him that my headaches were history - he slid the radiology rpt across the desk, and had me read it. That's how he informed me that I had MS. A year later I went to a specialist who looked at my second MRI which had more lesions, some highlighting and had me do an LP. That was positive too. That's when I started on meds.

I was so angry for the longest time because I felt like my peaceful life had been stolen from me, but now, I'm so thankful that they found it early. Treating early was obviously a really good idea for me.

NOOOOOOO! Say it ain't so!! :eek:
*running from room*
This board isn't big enough for another FG!!!

Ah~ you know I luvs ya, FG!

:hug:

And, I agree Greta~~ You are one of the few and lucky w/o sx's. Keep doing what your'e doing, cuz it's working.

Is it all of that GOOD clean living??? *grin*

Well- I won't know if it's really worked for about 40 more years or so. If I'm still walking and talking then, I'll breathe a little easier....;)

Yup, clean living it is! My own personal theory is that I can cure my MS by pickling my brain. Once I've proved this theory (through the mass consumption of fine Italian wine) I will patent it. You, my friend can have the cure for free!

AHA!!! Now I know what caused mine......<Sigh>

Sarah,

I'm highly suspicious that my problem could be Lyme instead of MS.

I've had at least 3 or 4 tick bites...and one of those was associated with a rash.

Do my doctors believe me? Oh heck no. The fact that I have a medical record that says that I had an erythematous rash (I didnt know much about Lyme when I had that particular tick bite, so I didnt mention the tick to the doctor at the time) and that I can remember the tick bites. (every single one of them. The first of which was when I was around 10 or 11yrs old)

I had to pay for my own Lyme testing at Igenex (independent lab that tests for Lyme bacterias) When I got my Western Blot back, I had 3 or 4 of the bacteria bands, yet my doctor only looked at the "negative" on the test.

I have the test kit for all of the bacteria bands (think there are 12 or 13 known Lyme bacterias) that I'm going to get the blood drawn for later this year (it's a $600 test!) My doctor at least is willing to humour me about getting the tests.

I'm still allowing them to treat me for MS, since I figure if it's Lyme, the MS treatment probably wont hurt me too much, and if it's truly MS, then I'll at least have been under treatment for that.

Dear Erin,

Where are you located? PM me and I can send you the name of the nearest Lyme doc! An EM rash is diagnostic of Lyme disease, it is the actual spirochetes moving through the skin. It cannot be caused by anything else. If someone HAS an EM rash, they HAVE Lyme disease.

It is really awful the way doctors think of lyme- they truly don't tend to know much about TBDs and think they do. I am sorry you didn't get treated for it. If you have symptoms at all, you can get way better with longterm abx therapy. We have had people leave wheelchairs, the longest was in 4 years pre-Lyme treatment (he was diagnsoed Juvie ALS).

Seriously, PM me where you live and I will go on lymenet.org to the Seeking Doctors column for you-!!! I was deathly ill & am symptom-free. It is nice to to be impaired.

Best wishes,
Sarah

p.s. Did you look at the maps? They amaze me!!!

I'm in Nebraska. There are no doctors here who are apparently Lyme knowledgable. (weird, you'd think a metropolitan area that's got a population of over a million people would have at least one doctor who knows something about Lyme)

I've seen an infectious disease doctor (who was a putz who could barely speak english. When I asked to talk to another doctor, he brought in another barely-speaking-English doctor who spoke even less english)

And, yes, I know...the ID doctors are all mostly un-informed about Lyme. (which would be why I think they're putz's)

Even tho my Western Blots have had several Lyme specific bacteria show up on them, they dont want to have anything to do with me. I dont have a very good opinion of a lot of doctors because they refuse to even help me investigate (except for my regular doctor, who at least humours me by letting his vampires draw my blood for blood tests)

neuros
 

Yup- they can be awful- we had one guy in our group, Jim H. with MS Lyme who has an EM rash, positiev ELISA, positive Wb AND a positive LP (which is rare, most Lymies test neg on LP~!)

and he still couldn't get treated for Lyme by establishment doctors. They follow the IDSA guidelines because of the insurance companies- But he went to our LLMD and got 100%!!!

I know there is a doctor in Kansas- I will look for one closer for you-
Best wishes,
Sarah

Aw, Gret, what a stinky deal. Sorry I've been absent, I have a lot on my mind. DM notified me about this and I just feel awful about it. What the heck is this freakin' disease?

Greta, that just sucks, plain and simple.

I've got a bother too, I stay as far away as possible from him, and try to keep him out of my business. I love him but he drives me nuts and is bad for my sanity. :(

P.S. I'm on the pickling treatment right now!:D

I have three brothers. Wanna trade? I have 2 will gladly trade off. Shoot I forgot, I have 5 brothers! One I will keep, the others...well...

Pickling works! We were working on that in Boston weren't we! LOL!

Greta, bees on their way! You can hear them coming! :)

*going to market for pickles*


Kosher???

brothers-
 

Greta, I also have a problem brother- he is an argumentative lawyer brother! We avoid each other, he has to win every verbal exchange, even hello!

Erin, there is not a single LLMD in Nebraska, you are however in the territory of one of the best LLMDs there is- the estimable Dr. Charles Crist of Missouri!
I am terrrible at geography. I have no clue how far that is- Dr Charles Crist in Springfield, MO!! The very best in the Midwest. I have read his work. He is a smart, great doc. He is one of the Top Ten LLMDs.


Dr Crist- website!!!
http://www.drcharlescrist.com

Best wishes,
Sarah

Yeah, I already looked up Dr. C in MO. I dont have the money to travel down there and see him. I suppose I could probably email or snail mail him my MS records and the WB's that I had done for Lyme and see what he says.

If I am ever successful in proving that this is Lyme and not MS, I'm not so keen on taking antibiotics for months or years. I had a LOT of antibiotics last year for a bunch of UTI's, a MRSA infection, 2 cases of bronchitis, and then one round of oral prednisone for severe vertigo. After all of that, I ended up with a raging yeast infection and bacterial vaginosis that doesnt seem to want to leave me. (well, the BV isnt bugging me, but the raging YI keeps coming back...sorry guys, if that's TMI)

I also just found out that I'm sensitive to antibiotics like levaquin and cipro. Apparently those abx's have a tendency to cause tendon ruptures. My left ankle that I ruptured the achilles tendon to in 2001 (working at WalMart, squatted down to pick up some trash and my tendon went POP! Customers 2 aisles away heard it) and my left shoulder that I've get chronic tendonitis in at least twice a year is killing me.

If this did turn out to be Lyme, I would hope they've got some abx's that dont make you susceptible to yeast infections and hopefully they wont make my tendons all rupture.

I would so much rather be back to the mostly healthy that I was before all this stuff started.

sideways to Erin- & to Greta-
 

Erin, Levaquin and cirpo are quinolines- they are not used in treatment for Lyme although they are used for the TBD Bartonella. Yes quinolines are known to do that for some people!! What a LLMD would likely put any MS Lymie on is IV Rocephin or IM Bicillin neither of which are quinolines. IV Rocephin has very few side effects and it is off patent now- you can get the generic Ceftriaxone for $412 a month. That is cheap now!!! (Mine cost $50,000 cash because my insurance wouldn't pay and IV Rocephin was on-patent then still and very $!!! CT and RI have MANDATORY IV Rocephin for lyme laws if I remember right because the insurance companies try to squeeze out of paying so much!) I have been a support group leader for 8 years and I can say that a Lyme doctor pretty much always treats MS Lyme with IV Rocephin or IM BIcillin rather than orals. IM Bicillin shots are in the penicillin family, are shots once a week in the buttocks area, you can giev it to yourself or have a friend or family member do it. IV or IM Rocephin is the bestest for neuro Lyme- that is what I had- 9 months of it. Then you transition to orals and don't go off unless you have 3 months symotom free!

Well, whatever works. I don't know how your MS treatment is going or your story. I just know that we have had MSers who were in wheelchairs get out of them and do way better with abx than they did with MS meds, so if you get that progressed in MS then it may be time to check out Lyme & Doc C. The nice thing about Lyme is that you can get so much better most of the time. Dr. Fallon says there is rarely DAMAGE even with gross impairment and I have found htat to be true (unless you have been treated with steroids which destroy responsivity to Lyme tx). I myself have been on abx for 9 years now. I have never had a yeast infection. I take prophylactic probiotics and anti-fungals and anti-c diff. I am just like normal as long as I stay on them and before IV I had no longer been able to walk normally, talk normally, think normally. Pre-abx I could no longer feel below my knees, could no longer walk wihtout falling, walking into walls, doorways, lurched on furniture, had clawhand, movement disorder, encephaloapthy, etc. For 7+ years I have been like normal again. I get very grateful for that because I was very very bad.

Anyway, take care, I wanted to give a heads up to you Greta & didn't mean to sideswipe the thread!!! Greta, I do believe you have Lyme since you had it- and clearly you do as well Erin!! EM is diagnostic. If you ever need resources you can call me at 1-831-662-2895 & I'll do my best to help- (daylight west coast hours because I have little kids)-
Take care all &
Best wishes,
Sarah

Sarah-
I don't care about sideswiping - I truly hope your info will help Erin - it sounds like she can really use some Lyme support! Thanks for the support offer!