Re: New Member - Question about severe paralysis

[Guest guest]

Dear Marilyn,

I found tons of info and help that I needed to treat my lyme after 29 years of

misdiagnosis by logging on to http://www.lymenet.com

From a personal standpoint, I haven't been " paralysed " from lyme, but I did have

spinal meningitis and encephalitis with many, many symptoms to follow from a

tick bite in 1974.

I've had infection after infection and one disorder or another for my entire

life! ...that is what I can remember of my so-called life...

Sounds like lyme could be the culprit to me! Your neice is lucky to have an aunt

like you watching out for her.

Best wishes to your family,

Carol aka dizz

[ ] New Member - Question about severe paralysis

Hi Everyone,

I joined this list because I have a question for you people with

first-hand information on Lyme Disease. Is there anyone who may have

experienced something like this?

My 21 year old niece has been in the hospital since June, 2003 with

severe paralysis. This came on over a period of a few weeks where she

went from being in excellent health, to not being able to move. She

was on a respirator for about 6 weeks last summer. She is now able to

breathe on her own, but she still has severe paralysis and vision

problems. She is in an excellent teaching hospital and they had given

her an unconfirmed diagnosis of Acute MS or ADEM (Acute Disseminated

EncephaloMyelitis). Since it has been over six months now, everyone

in the family is wondering exactly what's wrong and what can be done

to improve her health. Yesterday, it became apparent that she was

never tested for Lyme Disease (amazing, since we live in an area

where it does occur). I've been trying to quickly get educated in

Lyme Disease. It seems as though Lyme Disease can mimic the symptoms

of MS and even bring on encephalitis. If there is anyone who may have

experienced something like this, I would very much appreciate if you

could let me know.

Thank you very, very much,

Marilyn

To contact the list owner for any reason please write to:

-Owner

[Guest guest]

Marilyn,

I wonder if a Lyme specialist could be called in to consult? If your niece

is in an area where a good Lyme specialist practices I would sure try? I

would have her family talk with her attending and ask for a consult with a

particular doctor if at all possible. I sure think it would be very

important to look for Lyme. It is possible they ran some lab tests early on

that came back negative and maybe the family wasn't informed? This happens a

lot.

Is your niece in an acute care facility or in a skilled nursing facility?

This might make a difference too on if the family could make more direct

decisions on the testing. You could get a testing kit from Igenex

www.igenex.com

or MDLAB www.mdlab.com have the blood drawn and the family send these to

the labs themselves. You still have to have a doctor order the tests but

explain you would like the vector-borne specialty labs to run the tests if

at all possible.

Barb

[ ] New Member - Question about severe paralysis

Hi Everyone,

I joined this list because I have a question for you people with

first-hand information on Lyme Disease. Is there anyone who may have

experienced something like this?

My 21 year old niece has been in the hospital since June, 2003 with

severe paralysis. This came on over a period of a few weeks where she

went from being in excellent health, to not being able to move. She

was on a respirator for about 6 weeks last summer. She is now able to

breathe on her own, but she still has severe paralysis and vision

problems. She is in an excellent teaching hospital and they had given

her an unconfirmed diagnosis of Acute MS or ADEM (Acute Disseminated

EncephaloMyelitis). Since it has been over six months now, everyone

in the family is wondering exactly what's wrong and what can be done

to improve her health. Yesterday, it became apparent that she was

never tested for Lyme Disease (amazing, since we live in an area

where it does occur). I've been trying to quickly get educated in

Lyme Disease. It seems as though Lyme Disease can mimic the symptoms

of MS and even bring on encephalitis. If there is anyone who may have

experienced something like this, I would very much appreciate if you

could let me know.

Thank you very, very much,

Marilyn

[Guest guest]

I had this in the early '90s. It's scary. It wasn't so bad I had to

be on a ventilator but I can see how that could happen. Rita

atthelake@...

> Hi Everyone,

>

> I joined this list because I have a question for you people with

> first-hand information on Lyme Disease. Is there anyone who may

have

> experienced something like this?

>

> My 21 year old niece has been in the hospital since June, 2003 with

> severe paralysis. This came on over a period of a few weeks where

she

> went from being in excellent health, to not being able to move. She

> was on a respirator for about 6 weeks last summer. She is now able

to

> breathe on her own, but she still has severe paralysis and vision

> problems. She is in an excellent teaching hospital and they had

given

> her an unconfirmed diagnosis of Acute MS or ADEM (Acute

Disseminated

> EncephaloMyelitis). Since it has been over six months now, everyone

> in the family is wondering exactly what's wrong and what can be

done

> to improve her health. Yesterday, it became apparent that she was

> never tested for Lyme Disease (amazing, since we live in an area

> where it does occur). I've been trying to quickly get educated in

> Lyme Disease. It seems as though Lyme Disease can mimic the

symptoms

> of MS and even bring on encephalitis. If there is anyone who may

have

> experienced something like this, I would very much appreciate if

you

> could let me know.

>

> Thank you very, very much,

> Marilyn

[Guest guest]

Marilyn-

I was paralyzed from lyme disease and am now 98% better. I am a CNHP,

Certified Natural Health Professional, a licensed Iridologist and am finishing

my Dr.

of Naturopathy (Natural Medicine). I have plenty of firsthand experience when

it comes to lyme. I have been researching and applying protocols for the past

8 yrs.

Many of my clients are MS, ALS- Lou Gehrig's, Parkinsons, fibromyalgia,

chronic fatigue, lupus, etc. WHICH ARE ALL LYME.

Here is some info:

Many patients are told that they have Multiple Sclerosis (MS) because of

brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or

myelin basic protein (MBP). The medical literature is quite emphatic that MRI

does not reliably distinguish between MS an LD because there is too much overlap

in their supposedly distinct appearance and location of plaques. Plaques have

been detected with both disorders in the brain and spinal cord. OCB's and MBP

are non-specific markers for demyelination (loss of sheath around nerves) and

do not signify a cause of the demyelination. In Miklossy's study above, senile

plaques stained avidly for Bb spirochetes. Marshall reviewed the MD

literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion

that LD is causing MS! His survey revealed that multiple studies prior to 1951

were able to demonstrate spirochetes in the spinal fluid of MS patients (by

inoculation into animals and on silver stain of CNS tissues). Dr. Coyle has

documented the presence of antibodies to Bb in MS patients (Neurology Vol.

39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of

LD.

Both MS and LD are associated with sinusitis (Lancet, 1986). Dr. Leigner has

reported a case of LD which fulfilled all criteria for MS. The epidemiology of

MS

and the geographic distribution parallels that of LD. The symptoms of both LD

and MS can be aggravated if the patient takes a hot bath. Anecdotally,

patients with LD, who previously had been identified as MS, responded to

antibiotic

therapy.

If I can help in any way, please ask.

Sue Massie, CNHP

Nature's Garden of Health

732 933-4011

[Guest guest]

Marie & Marilyn,

I did NOT make a mistake (this time!) LOL

http://www.lymenet.com

and http://www.lymenet.org

go to the same web address!!!

Thanks!

Carol aka dizz

Re: [ ] New Member - Question about severe paralysis

Dear Marilyn,

The address that Carol sent you should have an " org " after it. That is,

www.lymenet.org. (Not " com " ).

Everything else these days has a " com " after it - thank goodness that

Lymenet is still an organization!

It sounds highly likely to me that your niece could be infected with Lyme

and possibly one or more of the Lyme co-infections. Did you know, most

doctors don't even KNOW that ticks can give you additional infections with

Lyme Disease, and which require different types of treatment? The

co-infections include Babesia, Erlichia, and Bartonella. There are

separate blood tests for each of them, although a negative test does NOT

mean she is not infected. The diagnosis is a clinical diagnosis.

You will want to get her tested. The labs where you get her tested will

matter. Not all labs are equal when it comes to Lyme testing. And not

all doctors are equal when it comes to interpreting the test.

Whenever a new Lyme patient comes along, we strongly urge them to find

what we call an LLMD, or Lyme Literate Doctor. If you post an inquiry,

and give us your location, people may be able to refer you from this List.

Also, there is a Seeking a Doctor section at Lymenet.org.

But if she is currently in the hospital and under the care of their staff,

I'm not sure how that would work. I imagine you could start with the

hospital tests, and go from there. The thing is, though -- and I know

this sounds scary and complicated -- the tests are NOT completely

reliable. If her Lyme titer comes back negative, it does NOT mean that

she doesn't have Lyme.

The test measures only antibodies, and sometimes the sickest patients

aren't making antibodies, as their bodies are overrun with infection.

This is one reason why it is so important to see an LLMD.

But you can cross that bridge if you come to it! The most important thing

is to get her tested. And if you can, DEMAND that the hospital also test

her for co-infections, that is: for Erlichia, Babesia, and Bartonella.

They should be able to.

Someone may suggest doing a spinal tap (she's probably already had those

anyway!) Just so you know, lumbar punctures are not completely reliable

either as a test for Lyme and co-infections. I forget the percentage,

but a certain number of positive cases just don't show. (This has been

proven). So, if you have a choice, it's just as well to save her the

additional procedure. It may give you confirmation, but it may not.

However, I do know cases where the Lyme has shown up in spinal fluid.

Maybe other people want to comment on this, too. But again, you can cross

this bridge if you come to it!

In any case, keep us posted, ok? I agree with the others, she is lucky to

have an aunt like you to research this. I have definitely heard of Lyme

creating symptoms like these. Bartonella also causes encephalopathy.

Do get her tested, and see if you can consult with an LLMD. A regular

Infectious Disease doctor may or may not be particularly helpful with

Lyme, and they often don't know a great deal about the co-infections.

I know that sounds disheartening. Unfortunately, Lyme is one disease

where you want to get a really good specialist. But start by getting her

tested at the hospital, and gathering opinions there.

(You aren't by any chance at Yale, are you? Some Lyme patients have had

some bad experiences with their doctors).

Please come back and ask more questions if you have them!

All best wishes!

Marie

To contact the list owner for any reason please write to:

-Owner

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[Guest guest]

Marie,

By the way, great answer! I saved that one for future reference.

Carol aka dizz