randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
somebody told me there was a young woman here in texas who died from MS. the dr's all said it was MS but many people believe she had lyme and went undiagnosed or was not treated properly.
i've had tons of brain scans, ct scans, and all. they come back normal.
but has anybody tried to tell lymies they have MS and not lyme? can the treatment for MS hurt you if you have lyme?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
the mainstream medical treats MS w/steroids & immune suppressant or immune modulating drugs.
When people have Lyme as the cause of their MS and they treat the Lyme...MS progression stops.
I'm a lyme induced MS person.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
so lyme can cause MS??
i'm sorry but my brain is just not "on" tonite. apparently this young woman was treated for MS but did not, in fact, have it. she had lyme and the treatments they gave her for MS caused her death.
at least that's what i heard.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Hi I was diagnosed with Hashimotos encephalitus a couple of months ago...yes what the heck is that! They gave me steroids and it took my neuropathy to a whole new level of insanity. I also truned red. The steriods hurt me. Thank goodness I stopped listening to the doctor and found the LLMD. Be very careful with steroids...what your symptoms carefully with a journal so you know what is happening.
Posts: 422 | From CT | Registered: Oct 2007
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my mother passed away from ms 3 years ago at the young age of 46.
however, this year all 4 of her daughters (including me, obviously) have been diagnosed with lyme.
our thought now is she likely never had ms, but had lyme.
in retrospect, her symptoms were much more consistent with lyme, not ms.
her condition deteriorated rapidly with all ms treatment.
based on childhood symptoms, my sisters and i are pretty sure that we have all had lyme our whole lives congenitally, although i believe i was reinfected. (We live in tick-infested Maryland)
i will never know for sure about my mom and i cannot change the past or erase the painful thoughts of "what if"...
but i just hope those receiving ms diagnosis' are seeking second opinions and more awareness is raised about the importance of treating the correct disease...
Posts: 209 | From maryland | Registered: Aug 2007
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quote:Originally posted by randibear: but has anybody tried to tell lymies they have MS and not lyme? can the treatment for MS hurt you if you have lyme?
1. YES!!!
2. YES!!!!
Do some more reading here on Lymenet. It is talked about all the time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I find it so very scarey when I think of all the misdiagnosis'es so many of us are getting, just so they could ignore any possibility of it ever being lyme.
I thought doctors were to "do no harm" but by ignoring the lyme and sending me to get epidural steroid injections for what they were calling degenerative disc disease, threw me into something the doctors said looked like a stroke.
And yet, even that wasn't enough for them to draw pieces together and when given a MRI that came back clean, they said there just was no reason why I shouldn't be able to walk now. I was so scared and sick ...and being made to believe it was all in my head, when you start questioning your OWN sanity...not good stuff.
I think many patients with M.S. are "faithful to their diagnosis". They trust their doctors and can not imagine their doctor would make a mistake or not be informed. And when I mention lyme, obviously, they go straight to the neurologist to ask what the doctor thinks and I hear back that the doctor says they definitely have M.S. How can you fight with THAT?
Heck, I have a friend that is so darn symptomatic but has so many doctors, all with different diagnosis's and she STILL won't humor me and atleast check with a LLMD to just "rule it out" with an Igenex test.
So not everyone is ready to let go of their original diagnosis's but it's pretty scarey all the people that have no clue. I was one with no clue for five years and I would have LOVED someone to come and share their experiences with me, since I was one lost puppy.
Good topic and scarey stuff.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Randi,
I am quoteing from memory from several years ago,,,so lyme brained and all,,,
There was a lady from Miami,,,happened to be the 'mayor' of that fine city. Docs told her she had MS. turned out she really had lyme and got well with treatment.
She is one of our outspoken supporters!!! This was on an audio web site that she TOLD her story first person!!
It had many more testaments to lyme on it!!!worth a listen!!!! by-just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
look at Peggy's story. She was dx'd MS found out Lyme. Her story is featured on the Public Health Alert Newsletter
posted
There are a lot of studies that seem to support the notion that MS may actually be Lyme disease.
MS treatments are counterproductive to Lyme disease and vice versa (if MS is determined to be an autoimmune disease).
The steroids used in MS treatment suppress the immune system and for Lyme patients who need their antibodies, that's bad news.
Antibiotics for MS patients is a no no since neurologists believe MS is an autoimmune disease. So, these doctors believe that the patient's immune system is attacking itself because it sees some component in the body, the nerves, as foreign. So, these doctors do not want to introduce anything else to aid the immune system, which antibiotics would essential be doing.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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