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» LymeNet Flash » Questions and Discussion » Medical Questions » MS or Lyme

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Author Topic: MS or Lyme
Ruwondering2
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Has anyone else ever been diagnosed with MS before their Lyme diagnosis. Because my standard Lyme tests were negative they told me it was MS, now I'm unsure just what I'm fighting with.
Posts: 5 | From New Hampshire | Registered: Jan 2014  |  IP: Logged | Report this post to a Moderator
steve1906
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Lyme disease is usually diagnosed based on symptoms, some will test positive, and some never will.

In the beginning I had neurological Lyme disease and is often characterized by white matter lesions in the brain resembling those found in MS patients. I had the white matter and they 1st. said MS – then changed it and said it was aging – not uncommon when it comes to Lyme.

Do some research online; you can start with this web-site below.

http://www.drsusanmarra.com/services/patient-resources/ms-vs-lyme-disease

Also read this Dr. B - http://www.lymenet.org/BurrGuide200810.pdf - Always a good starting point!

Steve

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Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Two things...

1. There is no definitive test for MS.
2. Most "standard" Lyme tests will not find the Lyme.

So.. get a test from a better lab such as Igenex and find an LLMD who can better evaluate you. You don't want to go to a Dr who knows little to nothing about Lyme (that would be 95% of doctors.)

So find a DR who sees it every day and knows how to treat it.

Also see this:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/125358?#000000

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--Lymetutu--
Opinions, not medical advice!

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LSG Scott
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i have been down that road but i am so much better now
you must watch this video
http://youtu.be/s3_JwDPqGAg

the women in this story matches me and many others
who were misdiagnosed as ms, Lyme causes brain lesions so listen to your spirit, your MS will only get worse without a good lyme doctor you can stop it like i did with a good plan

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LSG Scott

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Keebler
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Indeed, as others have replied, many were first misdiagnosed as having MS (or other neurological conditions such as ALS or Parkinson's, even Alzheimer's) until they finally consulted a true lyme expert, someone ILADS educated.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117839;p=0

Topic: Could (misdiagnosed) MS be Lyme?

Many links here about the Lyme-MS connection -

Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


http://publichealthalert.org/uploads/2013_6.pdf

Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses

Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013

- by Armin Schwarzbach, M.D., Ph.D. - Five Pages


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.

Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.


How just doxycycline (or other antibiotics, alone) can cause chronic lyme:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme
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Keebler
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Check all your labels, for everything that goes into your mouth (or even onto your lips). Some of these can cause all kinds of neurological issues (with or without lyme in the mix):


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);

GMO foods that destroy the GI Tract; Gluten; Dairy.

-----------------------

And remember that success is possible. Many have succeeded. It may be a rough ride at times but many have gotten better.
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Judie
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Thanks for posting this. My old link for it didn't work and I've been looking for it for awhile:
Ticked
http://youtu.be/s3_JwDPqGAg

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Carmen
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quote:
Originally posted by steve1906:


In the beginning I had neurological Lyme disease and is often characterized by white matter lesions in the brain resembling those found in MS patients. I had the white matter and they 1st. said MS – then changed it and said it was aging – not uncommon when it comes to Lyme...
Steve

After my first tick bite for which I was treated with doxy for 20 days for flu like symptoms... some months after that due an fall injury I was taking tramadol which caused a seizure. I had an MRI done in ER and the doc said there were numerous leasions in my brain that they had no name for.. said it was probably age related. Ive been fine since then until this past Oct, over 4 years, but I was bit again this past spring. I think my cognitive functions are OK.
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Keebler
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The white matter lesions on my brain MRI were also declared to be "age related" - nevermind that I was very, very ill.

They did say they highly suspected MS (due to all the neurological symptoms) but there would be nothing they could do about it other than steroids (which I refused, I knew that much as to avoid steroids, at least!) . . . and I refused a spinal tap (lumbar puncture) so they just angrily sent me on my way to "get a life." Because I refused that, they thought I could not be seriously ill or I'd would have done whatever they said.

I knew that test could not tell me anything I did not already know and that it could be very painful and expensive.

Years later when I learned about lyme possibility after decades of illness, finally, Igenex lyme test was positive . . . 2 other TBD and 2 other chronic stealth infections were diagnosed with other doctors.
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Carmen
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yep, Im thinking they were thinking that they were looking at an early Alzheimer's case.
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steve1906
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Carmen, I know I was bitten at least twice; ( maybe many more?) Both times caused me big time neurological symptoms.

I thought I was going mad, crazy etc. (for 2-3 years) - you know the feeling, when the bugs get in your brain, they take over your entire body.

I’ve read many times, neurologist often call the white matter MS, then call it aging. I guess if they’re not sure aging is our best bet. I hated my neurologist, wouldn’t listen, didn’t believe anything I said, and just plain didn’t care about anything I talked to her about, rude, rude, rude….

I only had one brain MRI, years ago, maybe someday I’ll do another.

How are you doing since your last Oct Bit?

Steve

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Everything I say is just my opinion!

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steve1906
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By the way, I asked her (neurologist) if The white matter could be Lyme, she said No No No.

I know, I should have seen a LLMD on the readings.

Also, it's funny I tested positive shortly after that at a local blood bank (CDC pos)

Steve

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Everything I say is just my opinion!

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Carmen
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She has no way to know what it is just from an MRI. She's just a parrot.
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steve1906
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At the time when I had the brain MRI, (in the beginning), I had well over 20 other symptoms.

She wouldn’t take the time to consider all other possibilities.

I’m just trying to give some insight to our new members, and what they might except from most non-LLMD’s.

Steve

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Everything I say is just my opinion!

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