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» LymeNet Flash » Questions and Discussion » Medical Questions » New here: MS now Lyme

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Author Topic: New here: MS now Lyme
adamttt
Member
Member # 19691

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Hi everyone im new here and just wanted to do a brief background of my situation.

I was diagnosed with MS in November 2002, and have slowly declineed in mobility where its now harder to walk further than 10 metres.
My balance has also suffered, and bladder problems.
These are the symptoms i have, i dont have any others.

2 weeks ago I recieved test results back from Melsisa Diagnostics (in Germany):

"I can briefly summarize your results as follows:
1) all serological tests for co-infections were negative
2) the LTT-MELISA for Lyme was positive, indicating current ongoing Lyme
Borreliosis."


So now i do have Lyme disease it makes me question if i actually have MS.


I have an appointment to see a LLMD next week where i should get their recommendation on the abx program.

I just wanted to know if anyone has been in this situatin: disgnosed with MS, then later has positive to lyme.
If so, have you recovered? did your 'ms' smyptoms improve? what were they and how much better are they now?
what treatment did you take?


thanks

Posts: 33 | From UK | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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hi adam,

sorry, we don't have knowledge of germany labs, but i have a suggestion for you ok!

edit your subject line and add this: Melsisa Diagnostics (in Germany) feedback needed!


to edit, click on pencil, 3rd box to right of your name in your 1st post, which opens up subject line and text area.

after adding it there, make sure you have marked lower left hand box to receive all replies, and click edit send!

now you will have our GERMANY MEMBERS attention.


also to find our germany members, click on DIRECTORY at top

go to 2nd blank line on left side
type germany
use arrow next line for LOCATION
click search
it will show all members showing germany for their location...

go to bottom; most current members and send them a private message if they have knowledge of this test by showing the ADDITIONAL INFO i showed above to be added to your subject line. good luck!

we can help you on other things, just not overseas labs that we are unfamiliar with ok. [Smile] [group hug] [kiss]

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adamttt
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Member # 19691

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thank you very much Betty for helping, however im not asking about the lab, i wanted feedback from others who were diagnosed with ms to later find they had lyme, and how the treatment went.

"I just wanted to know if anyone has been in this situatin: disgnosed with MS, then later has positive to lyme.
If so, have you recovered? did your 'ms' smyptoms improve? what were they and how much better are they now?
what treatment did you take?"


But i appreciate your helpy betty [Smile]

Posts: 33 | From UK | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Sojourner
LymeNet Contributor
Member # 9424

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Hi adamttt,
My husband is in your situation. MS dx'd in 2004 and has been treating lyme since 2006.

No one can tell you how treatment will go. Everyone is very individual. Once lyme has progressed to an MS-like disease treatment can be difficult, but the benefits can be great.

My husband has done only orals to this point, and has basically used all of them (and treated all co-infections). He has not progressed at all and feels better today than in 2004. Pretty sure we are ready to do some IV, though.

He hasn't taken MS meds since 2006, and has never had iv steroids. He has no ranking on the disability scale.....Our llmd always laughs because my husband looks so well and his neuro exams, etc are always outstanding. If not for MRI's I doubt he ever would have been dx'd. He does have a lot of lesions, however.

There is a website cpnhelp.org where there are a lot of people with MS treating with abx. They treat chlamydia pneumoniae with the same abx used for lyme as Chlamydia P. has been implicated in MS too.

Best of luck---how exciting to have some hope for treating that stupid disease(MS= [rant] )

Posts: 554 | From Naples, Italy | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
adamttt
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Member # 19691

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thanks Sojourner, its great your husband is doing well on orals alone .

Fingers crossed i improve on the iv abx

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Snailhead
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Member # 18091

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Hi Adam, I am also in the same situation. First dxed with Fibro in 2005, then MS in 2007. I spent a year on injections, only to watch my health decline.

I started IV abx in mid Jan., and really don't know if it is helping or not. I just know that I don't know if I have/had MS (actually "MS" simply means "multiple scars or lesions") and is just a name for a group of symptoms, with no known cause.

Lyme, on the other hand, has a cause that can be treated. If you have a test showing Lyme, treat it. There are even some patients with "MS" that are being treated with abx and are showing improvement. Go figure. God Bless you.

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adamttt
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Member # 19691

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thats great Snailhead, i wanted to hear from people in a situation like mine, ms to lyme, and how they found treatment.

You say you dont know if the iv abx are helping or not? how severe were your symtons beforwe abx, and did you have a herx reaction?

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David95928
Frequent Contributor (1K+ posts)
Member # 3521

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I know someone who had an MS diagnosis for four years, eventually deterioriating to having to use a wheelchair. When treated with antibiotics, she improved enough to resume walking (albeit with a bit of foot-drop for which she uses a thin plastic brace), return to college for a second degree in a less strenuous profession. She graduated last spring and is doing well. She tried going off antibiotics and worsened so she now takes maintenance antibiotic, she figures it will be for life.
Dave

--------------------
Dave

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tory2457
LymeNet Contributor
Member # 10384

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Hi adamttt,

Count me in too, I've had a MS diagnosis since 1990, then after much reading and digging I found I have Lyme disease and have been in treatment since 2006. Doing well and haven't missed my daily injections of Disease Modifying drugs; BIG waste of my time and money, imo.

So welcome to the club, and the best to you. READ all you can, and continue to ask questions and then read some more.

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Myco
LymeNet Contributor
Member # 9536

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Go to Cpnhelp.org for best MS/Lyme treatment recommendations.

Best,

Chris

Posts: 770 | From USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
   

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