Originally Posted by SallyC (Post 188501)

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..:)

Originally Posted by Av8rgirl (Post 188504)

She wanted to be like Laurel and Me! LOL!

:p

Originally Posted by daisymay (Post 188673)

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*

Originally Posted by daisymay (Post 188673)

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*

Originally Posted by SarahO (Post 188365)

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

Originally Posted by Erin524 (Post 188708)

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.

Originally Posted by SarahO (Post 188710)

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!!!