posted 06 June, 2008 09:33 AM -------------------------------------------------------------------------------- Hi, I am looking into the lyme and ms connection and looking for others like myself who were told ms and found out it was lyme. I believe ms is lyme with its co infections left untreated. I need others who have been through the same thing. The ms society says it is rare but what I have found out it seems that borrelia is causing most if not all cases of ms. Thank you, Tammy --------------------------------------------------------------------------------
Posts: 125 | From southington | Registered: Jan 2002
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bettyg
Unregistered
posted
tammy, there are many here dx w/both or 1 or other !!
please edit subject line.....add O ... i couln't figure out what "thers" was lyme and ms...
others may have been confused and didn't read your link too.
just click pencil/paper which opens up subject line and body text
did you go to left hand corner and mark box for all replies to come to you?
add the O; click edit send when done.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Tammy. Yup, as Betty says, there's a lot of us on here with MS diagnoses who actually had lyme all along. Happens a LOT!
Your post is probably fixin' to fall off the front page, though, since it's not clear 'zackly what you're asking from your subject line.
If you hit the "search" button at the top right on this page and type MS into the subject line, you will probably get enough posts to read until your eyes go crossed!!!
Also, LymeNet has a nice collection of medical abstracts which appear over on the far left hand side of this page which I've linked below. Click on it and type in the word sclerosis and you'll get lots of articles if you want more scientific stuff.
In the meantime, if you have any specific questions, just holler and someone will jump in!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I have knowingly had Lyme & co-infections and have continued to have a progression of symptoms.
I recently had a bout with Optic Neuritis and my symptoms get worse with elevation of body temperature.
I was told that the worsening with heat used to be the means for diagnosis for MS, before they had all the tests they have now. It's referred to as "Uthoff's phenomenon".
In light of this, I was recently told that I likely have "MS secondary to Lyme". I spoke to another LLMD about this who told me that she found this interesting, as she had never heard it referred to that way. She has heard it called Lyme encephalopathy.
I think the first Dx of possible "MS secondary to Lyme (due to molecular mimicry)" was trying to make the point that my Lyme has been undertreated and therefore my immune system is catching my own OspA in the crossfire of trying to get at the Bb.
I am so glad that you posted this because now I know how I'm going to approach this at my next LLMD appt.
It is so easy to have the Lyme Dx missed.
The testing STINKS!
It would seem that MOST doctors don't really recognize the symptoms.
A great number of people never realize that they've been bitten.
Many believed they eeded to have a bulls-eye rash.
Often people don't realize that by simply grasping the tick with your fingers to remove it, or accidentally putting pressure on it before you know it's there, can cause it to regurgitate & inject the contents into you.
There can be Bb in the saliva of ticks that can be transmitted so the 36-48 hours (or whatever they're saying now) doesn't mean anything either. It just means that it will take much longer to feel ill effects from it & therefore MOST never make the connection between the illness & the tick-bite.
I do believe that science is FINALLY starting to investigate & point toward the infectious causes of MS. Perhaps if a few more doctors start pointing it out in undertreated patients with proven Lyme, more people Diagnosed with MS might be helped.
I hope that the reevaluation of the IDSA guidelines will make a difference in diagnoses and treatment.
I also hope that we can get the Lyme Bill passed, so that we can get funding for research. That would stand to help a LOT of people who may have underlying untreated Lyme disease causing their illness.
Perhaps we should try to garner some support from some MS support groups to help get the bill for reasearch passed, as it could stand to help them too. I hope I remember to post this thought over in activism later, because I can't do it right now.
Thanks for that too!!!
I am so sorry that you have MS symptoms too. It really stinks!!! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
PS - the "o" is missing from "others" in the title. For some reason, this gave me a great deal of confusion.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
tammy,
please COPY THE 4 REPLIES HERE and paste them to the OTHER DUPLICATE POST where you have 12 replies now. this way all replies will be in ONE area!!!!! thx.
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