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Lyme Disease ForumsGeneral & SupportMS and Lyme's disease
10/09/2008 12:20 PM
momnace
Posts: 17
Member

Has anyone been diagnosed with MS to only find out it was Lyme's disease? I have two lesions on my spinal cord but definitely have some form of Lyme's. I have been on 14 weeks of IV rocephin and have gotten ALOT better . Just wondering if anyone out there has an info or has had the diagnosis only to be changed to Lyme's only .

Thank you .

Reply

10/09/2008 12:28 PM  Top
fluffyluggage
fluffyluggage
 
Posts: 4723
VIP Member
I'm an Advocate

I can't speak to MS, but you'll find that MANY of us here have been misdiagnosed, whether it's ALS, MS, FMS, CFS, whatever the abbreviation, but we all have Lyme (LD--there ya go, another abbreviation!) instead. It's closely linked to too many diseases, but it's not well-recognized, and too many docs are poorly educated on it. They don't look, cuz they don't want to see it, and they don't know how to recognize it even if they wanted to.

Forgive me if I sound bitter. It's been a rough couple of days, and I've spent the last month or 2 fighting with everyone around me, trying to get someone to listen to me. I've spend 14 years battling this, and just trying to get a diagnosis is virtually impossible. Even getting tested doesn't guarantee you results...But hang in there, I know there's hope and there's help. There are a TON of people on this site who HAVE been misdiagnosed and gone on to find out the accurate diagnosis, but you have to fight. It may be an uphill battle, but you'll get there. Don't stop fighting, and don't give up!

*hugs*

Jen

Just because it's impossible doesn't mean it can't happen.

I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help. I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!

The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.

Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version)

10/09/2008 01:31 PM  Top
tomro62
tomro62
 
Posts: 359
Member

My wife is an RN and hears many stories at the hospital.

Since I was diagnosed, the Lyme stories she tells and hears are many. There have been four relatives of nurses at her hospital who have gone from a diagnosis of MS, to one of Lyme disease. There has been one other in her church.

It is becoming more common every day.

Tom

I am not a doctor, and nothing I say here should be taken as medical advice of any kind.

10/09/2008 03:21 PM  Top
cave76

http://health.groups.yahoo.com/group/LymeInfo/message/433

Association between multiple sclerosis and cystic structures in cerebrospinal fluid.

http://home.pon.net/caat/lyme/cyst_phase/MS_study.htm

LYME BORRELIOSIS AND MULTIPLE SCLEROSIS: ANY CONNECTION?

A SEROEPIDEMIC STUDY

http://www.aaem.pl/pdf/aaem0024.htm

Med Hypotheses. 2005;64(3):438-48.

Related Articles, Links

Chronic Lyme borreliosis at the root of multiple sclerosis--is a cure with antibiotics attainable?

Fritzsche M.

Clinic for Internal and Geographical Medicine, Soodstrasse 13, 8134 Adliswil, Switzerland. markus.fritzsche@gmx.ch

Apart from its devastating impact on individuals and their families, multiple sclerosis (MS) creates a huge economic burden for society by mainly afflicting young adults in their most productive years.

Although effective strategies for symptom management and disease modifying therapies have evolved, there exists no curative treatment yet.

Worldwide, MS prevalence parallels the distribution of the Lyme disease pathogen Borrelia (B.) burgdorferi, and in America and Europe, the birth excesses of those individuals who later in life develop MS exactly mirror the seasonal distributions of Borrelia transmitting Ixodes ticks.

In addition to known acute infections, no other disease exhibits equally marked epidemiological clusters by season and locality, nurturing the hope that prevention might ultimately be attainable.

As minocycline, tinidazole and hydroxychloroquine are reportedly capable of destroying both the spirochaetal and cystic L-form of B. burgdorferi found in MS brains, there emerges also new hope for those already afflicted.

The immunomodulating anti-inflammatory potential of minocycline and hydroxychloroquine may furthermore reduce the Jarisch Herxheimer reaction triggered by decaying Borrelia at treatment initiation. Even in those cases unrelated to B. burgdorferi, minocycline is known for its beneficial effect on several factors considered to be detrimental in MS.

Patients receiving a combination of these pharmaceuticals are thus expected to be cured or to have a longer period of remission compared to untreated controls. Although the goal of this rational, cost-effective and potentially curative treatment seems simple enough, the importance of a scientifically sound approach cannot be overemphasised.

A randomised, prospective, double blinded trial is necessary in patients from B. burgdorferi endemic areas with established MS and/or Borrelia L-forms in their cerebrospinal fluid, and to yield reasonable significance within due time, the groups must be large enough and preferably taken together in a multi-centre study.

PMID: 15617845 [PubMed - indexed for MEDLINE]

And on and on. Too many to list here. Many MS people have either gotten a LOT better or 'cured' after being treated for Lyme disease.

There are people who won't improve, of course. But my opinion is---- why not try a course (long) of antibiotics and see what happens.

Antibiotics are said to be 'dangerous' or 'destructive' if taken for a long time. That's a myth that has been passed around for a long time. Just ask any Lymie how long they've taken abx. Smile And how much better they feel ------ IF they had Lyme disease.


06/17/2009 08:05 PM  Top
lindaca
 
Posts: 1009
Member

Back from the neuro, and here are the results: Spinal fluid tested through LabCorp was positive for IgM band 23. Blood tested prior was highly positive for bands 23, 41 and western blot. There are FIVE oligoclonal bands in the spinal fluid, which means a raging infection.

I can't find anything that shows lyme having a major part in MS where there is more than one band present, so it could mean that both are ocurring simultaneously for some reason? Not sure how this is interpreted.

I have an appt with and ID LLMD next week, but don't know how open-minded she is to the various treatments. Have all the prior lab tests to bring her, so we'll see!


06/18/2009 10:09 AM  Top
mommy30
Posts: 33
Member

My husbands brother has a progressive degenerative case of MS, so when my husband had some numbness in his hands and L Hermittes sign we thought it was MS for sure. All signs pointed to MS, except for the blood test positive for Lyme disease. His doctor pretty much thought MS until the blood test results and spinal tap results, he also has two lesions on his spine (C3 and C4). He had 21 days of Rocephin and all symptoms were gone. She said she will do MRI's every 6 months, because we can't rule out MS yet. But since the lesions are gone according to the MRI, it likely isnt. She is not a LLMD, but all we could get in to see at the time. He is now having some fatigue but other symptoms are gone. Hope this helps.

06/18/2009 10:58 AM  Top
lindaca
 
Posts: 1009
Member

mommy30, did your husband have the oligoclonal bands in his spinal fluid, or just positive for lyme?

06/18/2009 11:04 AM  Top
mommy30
Posts: 33
Member

I am not sure, I will check the paperwork and let you know.

06/18/2009 11:25 AM  Top
cpileggi
Posts: 40
Member

I was being worked up for MS cuzz my MRI came out abnormal. My neurologist stated that I didn't have enough symptoms like visual s/s, to diagnose me for MS so he wanted to repeat the MRI in 6mo to see if there were any changes. I refused Spinal tap. So, MRI had no changes and his assoc. did more tests and one of them was Lyme, the Western Blot 23 IGG, 41 IGG,IGM was reactive. So yes it was getting to the point that I think he was going to diagnose me for MS because nothing else was coming out positive (vasculitis, other autoimmune diseases). Thank god this showed because if they put me on a coarse of steroids I would be in worse shape in trying to treat the lyme. That is a big no-no!!

Previous discussions I participated in:
best test
What is detoxing?
Neck sweats

06/18/2009 11:39 AM  Top
cmany
cmany
 
Posts: 6206
Group Leader
I'm an Advocate

OK - I am one of those who believe that MS is disease/condition that can be attributed to a spirochete infection...

Since the 30's (you can google this I just dont have time today to find all of my links) they have periodically found a spirochete infection.

Bare in mind, this bacteria is still very evasive and we cannot always find where the bacteria is hiding in our bodies...

I believe it was in 1997 a researcher (cannot remember if she was a doctor) presented her findings - and basically said that there was a connection between spirochetes and MS - Maybe not Burgdorfori - but another strain of the bacteria...

Hopefully I will be able to find the time to go through all of my links to find this info - unfortunately my IE will not work and I know some are there...

I have 2 cousins with MS diagnosis - one treated for Lyme until the ins cut him off...but he was getting better...the other has been treated with mega doses of steroids - and now being under the age of 30 he is basically a petrified log...takes him 10-20 minutes to respond with a simple smile when told a joke...

In my personal opinion - any condition treating with steroids is VERY dangerous...it suppresses the immune system, and reactivates dormant viruses - which add to other problems...for example HHV6 - which can cause CNS issues...

The info is out there...

Christine

[b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid
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