Re: ot: FW: treatment of MOTOR NEURONS/AMYOTROPHIC LATERAL SCLEROSIS/LOU GEHRIG'S DISEASE/LYME DISEASE

[Guest guest]

THANK YOU SO MUCH SCOTT!! SO MANY OF US HAVE BEEN TOO SICK OR

UNMOTIVATED TO ORGANIZE ANY SUCH DOCUMENT. Tammy F.

I think this is worth forwarding and

helping to get the word out. ALS appears to be Chronic

Lyme. No real surprise there for many of us in the

Lyme community.

www.lyme-resource.com

You can lead a person to a fact, but you can't make

them think! -

Date: Monday, April 18, 2011,

10:50 PM

MOTOR NEURONS

AMYOTROPHIC

LATERAL SCLEROSIS

LOU GEHRIG'S

DISEASE

& LYME

DISEASE

Posted Aug 06 2010

4:33am

From:

Atkinson-Barr (

mcmab@...

)

Subject:

Successful treatment

of late-stage ALS

Newsgroups:

sci.med.diseases.lyme

Date: 2001-05-21

12:01:10 PST

http://www.lymenet.de/indexordner/ials.htm

I am pleased to announce the

following:

Since

April 1999, 150 ALS

patients have been

tested for Lyme disease

with a panoply of tests

- incl Western Blot,

LUAT, PCR.

Not one

patient has been found

to be negative across

all tests.

Many have

been shown to be PCR

positive.

The prognosis

and disease development of

these patients is entirely

consistent with ALS.

Treatment with

oral antibiotic therapy has

shown mixed results.

In particular

the use of conventional

antibiotics (esp.

doxycycline)

has been

associated with

deterioration of

ALS patients.

In one case the

patient rapidly

succumbed.

In

earlier stage ALS

patients there is

some evidence for

improvement, with

restoration of

speech in two

patients and some

reported easier

swallowing, when

treated with oral

metronidazole or

tinidazole.

The reactivity of ALS

patients to Lyme tests

has been previously

reported .

In the course of

the past 9 weeks, a

patient (body weight

125lbs, 66 years of age)

with advanced

ALS symptoms has

been treated

aggressively with IV

metronidazole +

conventional

antibiotics (Biaxin

initially) at doses

of 500mg tid

metronidazole IV and

500mg Biaxin bid

orally .

The

diagnosis of ALS was

made at the Mayo

clinic.

The patient was

admitted in respiratory

failure with tongue

fasciculations, weakness

in the right arm.

The

immediate prognosis

was poor and the

attending physician

expected the patient

to expire within 24

hours. The patient

was ventilated.

In the course of 7

weeks of the above therapy

the patient has improved

and is now ambulatory and

off of

ventilation using

only occasional

nasal oxygen.

On the

IV therapy, the tongue

fasciculations

disappeared.

After

7 weeks the patient

was taken off of the

IV meds

and

treated with only

oral tetracycline

(500mg qid).

On this

treatment the tongue

fasciculations

returned

..

The IV therapy was

reinstated with IV

Rocephin replacing the

oral Biaxin and the tongue

fasciculations ceased.

The patient

continues to improve on a

daily basis.

Tentative

conclusions

The etiologic

agent of ALS is Borrelia

burgdorferi.

Effective

treatment of late

stage ALS is possible

with aggressive

antibiotic therapy

that must include

metronidazole.

Other researchers

have recently reported

success in treating early

stage ALS with antibiotic

therapy.

ALS

patients should not be

treated with simple

"textbook" antibiotic

therapy which does not

include a

nitroimidazole.

This therapy

should be considered

experimental at this

stage.

Regards

Atkinson-Barr PhD

( physician

e-mails only please,

I cannot reply to

every patient e-mail - it

would be too many

-

but

physicians who want to

ask me detailed

questions will be able

to contact me and help

multiple patients)

*******************************************

From: Atkinson-Barr

(mcmab@...)

Subject: Successful

treatment of late-stage

ALS Newsgroups:

sci.med.diseases.lyme

Date:

2001-05-21 21:16:29

PST

Let us be clear

how I come up with the

figure of 150.

When I published

my work on metronidazole

in Lyme, around 20

patients contacted me and

said they had Lyme AND ALS

..

Once I had decided there

may be a connection

between the diseases, I

encouraged every ALS

patient I came across, and

a few physicians to test

for Lyme.

All told that is

about 30.

This is the most

important group for they

were unselected.

There

were NO negatives in

this group and for the

most part they were

either IgG or IgM

Western Blot positive,

mostly to CDC criteria

(which is over strict

and ignores the 39kDa

line)

Dr Nick has been

sending on to me all of

the ALS patients that have

contacted him who were

positive.

These

patients I questioned

closely to determine

if they had a clinical

picture of ALS. All

did. There have been

around 20.

When my website

was up (thanks to the ISP

it was lost)

around another

80 ALS patients

contacted me with

their results, all

positive.

No ALS patient has

ever been in contact with

me who is negative.

There must be

some.

If we were to take

150 Lyme patients, we

would be VERY surprised to

have 150 positives, more

like 100.

However

many of the above were

pre-selected (why

would you contact me

if you were diagnosed

ALS but Lyme negative,

I would be snake

oil.).

BUT, if the diseases were

independent, we would

expect a MAXIMUM of 100

cases in the whole of the

US, so 150 becomes a

significant number.

Now, those

patients who were

diagnosed ALS and tested

Lyme positive carried on

to develop the sequelae of

ALS.

Last Thursday we

lost Dean Chioles

who has a web page at http://www.shoptown.com/dean/

..

Note that he was

diagnosed with Lyme in

1998, before I published

anything on Lyme.

We

should also remember:

Pierson and

Crowe who we

also lost, both Lyme

positive. was 43

years old or so.

Now there have

been 5 papers that

describe clinically

diagnosed ALS patients

with Lyme reactive

serologies

(including the

Halperin paper which finds

a statistically

significant number of Bb

positive patients with

ALS) and

one

letter by Mandell,

Steere et. al. NEJM

1989;320:255-6 which

found NO Bb antibodies

in any ALS patients.

The

responsibility is now

with Mandell, Steere

et. al. to come

forward and explain

how they can find NO

Lyme positive ALS

patients

when I can find

them so easily and

even ALS patients

themselves can see the

connection.

How about it Dr

Steere, this is an open

venue?

Perhaps

one of the Yale

workers will read this

and we can enter into

a debate that will

explain why this

connection has been

stalled for 12 years.

With best regards to all.

Dr

Atkinson-Barr

-

[Guest guest]

Also, my aunt who died w this label had a Hair Elements Test that counted out

toxic for mercury by every method that Cutler proposes. She was a farm kid who

was exposed to DDT as a child and also had many opportunities for tick bite

exposure. So probably a combination of insults.......

>

> THANK YOU SO MUCH SCOTT!! SO MANY OF US HAVE BEEN TOO SICK OR

> UNMOTIVATED TO ORGANIZE ANY SUCH DOCUMENT. Tammy F.

> >

> > I think this is worth forwarding and helping to get the word out. ALS

> > appears to be Chronic Lyme. No real surprise there for many of us in

> > the Lyme community.

> >

> > www.lyme-resource.com <http://www.lyme-resource.com/>

> > You can lead a person to a fact, but you can't make them think! -

> >

> >

> > **

> > From: Tom Grier <tomgrier2001@...

> > >

> > Date: Monday, April 18, 2011, 10:50 PM

> >

> >

> > *MOTOR NEURONS *

> >

> >

> > *AMYOTROPHIC LATERAL SCLEROSIS *

> >

> >

> > *LOU GEHRIG'S DISEASE *

> >

> >

> > * & LYME DISEASE *

> >

> > Posted Aug 06 2010 4:33am

> >

> > From: Atkinson-Barr ( mcmab@...

> > <http://us.mc1612.mail.yahoo.com/mc/compose?to=mcmab@...> )

> >

> > Subject: **Successful treatment of late-stage ALS **

> >

> > **Newsgroups: sci.med.diseases.lyme **

> >

> > Date: 2001-05-21 12:01:10 PST

> >

> > http://www.lymenet.de/indexordner/ials.htm

> >

<http://www.wellsphere.com/linkOut.s?link=http%3A%2F%2Fwww.lymenet.de%2Findexord\

ner%2Fials.htm>

> >

> >

> >

> > I am pleased to announce the following:

> >

> > **Since April 1999, 150 ALS patients have been tested for Lyme

> > disease with a panoply of tests - incl Western Blot, LUAT, PCR. **

> >

> > **Not one patient has been found to be negative across all tests.

> > ******

> >

> > **Many have been shown to be PCR positive. ***

> > *

> > The prognosis and disease development of these patients is

> > entirely consistent with ALS.

> >

> > Treatment with oral antibiotic therapy has shown mixed results.

> >

> > * In particular the use of conventional antibiotics (esp.

> > **doxycycline) has been associated with deterioration of ALS

> > patients. **

> >

> > * In one case the patient rapidly succumbed.

> >

> > * **In earlier stage ALS patients there is some evidence for

> > improvement, with restoration of speech in two patients and

> > some reported easier swallowing, when treated with oral

> > metronidazole or tinidazole. ***

> > *

> > The reactivity of ALS patients to Lyme tests has been

> > previously reported .

> >

> > * In the course of the past 9 weeks, a patient (body weight

> > 125lbs, 66 years of age) with **advanced ALS symptoms has

> > been treated aggressively with IV metronidazole +

> > conventional antibiotics (Biaxin initially) at doses of

> > 500mg tid metronidazole IV and 500mg Biaxin bid orally **.

> >

> > * **The diagnosis of ALS was made at the Mayo clinic. **

> >

> > * The patient was admitted in respiratory failure with tongue

> > fasciculations, weakness in the right arm.

> >

> > * **The immediate prognosis was poor and the attending

> > physician expected the patient to expire within 24 hours.

> > The patient was ventilated. **

> >

> > * In the course of 7 weeks of the above therapy the patient

> > has improved and is now ambulatory and **off of ventilation

> > using only occasional nasal oxygen. **

> >

> > * **On the IV therapy, the tongue fasciculations disappeared. ***

> >

> > *

> > **After 7 weeks the patient was taken off of the IV meds **

> > **and treated with only oral tetracycline (500mg qid). **

> >

> > * **On this treatment the tongue fasciculations returned ** .

> >

> > * The IV therapy was reinstated with IV Rocephin replacing the

> > oral Biaxin and the tongue fasciculations ceased.

> >

> > * The patient continues to improve on a daily basis.

> >

> > Tentative conclusions

> >

> > * The etiologic agent of ALS is Borrelia burgdorferi.

> >

> > * **Effective treatment of late stage ALS is possible with

> > aggressive antibiotic therapy that must include

> > metronidazole. **

> >

> > * Other researchers have recently reported success in treating

> > early stage ALS with antibiotic therapy.

> >

> > * **ALS patients should not be treated with simple " textbook "

> > antibiotic therapy which does not include a nitroimidazole. **

> >

> > * This therapy should be considered experimental at this stage.

> >

> > Regards

> > Atkinson-Barr PhD

> >

> > * (**physician e-mails only please, **

> >

> > * I cannot reply to every patient e-mail - it would be too many -

> >

> > * **but physicians who want to ask me detailed questions will

> > be able to contact me and help multiple patients) ***

> >

> > * *******************************************

> > From: Atkinson-Barr (mcmab@...

> > )

> >

> > * Subject: Successful treatment of late-stage ALS Newsgroups:

> > sci.med.diseases.lyme

> >

> > * **Date: 2001-05-21 21:16:29 PST **

> >

> > * Let us be clear how I come up with the figure of 150.

> >

> > * When I published my work on metronidazole in Lyme, around 20

> > patients contacted me and said they had Lyme AND ALS .

> >

> >

> > Once I had decided there may be a connection between the

> > diseases, I encouraged every ALS patient I came across, and

> > a few physicians to test for Lyme.

> >

> > * All told that is about 30.

> >

> > * This is the most important group for they were unselected.

> >

> > * **There were NO negatives in this group and for the most

> > part they were either IgG or IgM Western Blot positive,

> > mostly to CDC criteria (which is over strict and ignores the

> > 39kDa line) ***

> >

> > *

> > Dr Nick has been sending on to me all of the ALS

> > patients that have contacted him who were positive.

> >

> > * **These patients I questioned closely to determine if they

> > had a clinical picture of ALS. All did. There have been

> > around 20. **

> >

> > * When my website was up (thanks to the ISP it was lost)

> > **around another 80 ALS patients contacted me with their

> > results, all positive. **

> >

> > * No ALS patient has ever been in contact with me who is

> > negative.

> >

> > * There must be some.

> >

> > * If we were to take 150 Lyme patients, we would be VERY

> > surprised to have 150 positives, more like 100.

> >

> > * **However many of the above were pre-selected (why would you

> > contact me if you were diagnosed ALS but Lyme negative, I

> > would be snake oil.). ***

> >

> > *

> > BUT, if the diseases were independent, we would expect a

> > MAXIMUM of 100 cases in the whole of the US, so 150 becomes

> > a significant number.

> >

> > * Now, those patients who were diagnosed ALS and tested Lyme

> > positive carried on to develop the sequelae of ALS.

> >

> > * Last Thursday we lost Dean Chioles who has a web page at

> > http://www.shoptown.com/dean/ .

> >

> > * Note that he was diagnosed with Lyme in 1998, before I

> > published anything on Lyme.

> >

> > * **We should also remember: **

> >

> > * Pierson and Crowe who we also lost, both

> > Lyme positive. was 43 years old or so.

> >

> > * Now there have been 5 papers that describe clinically

> > diagnosed ALS patients with Lyme reactive serologies

> >

> > * (including the Halperin paper which finds a statistically

> > significant number of Bb positive patients with ALS) and

> >

> > * **one letter by Mandell, Steere et. al. NEJM 1989;320:255-6

> > which found NO Bb antibodies in any ALS patients. ***

> >

> > ***The responsibility is now with Mandell, Steere et. al. to

> > come forward and explain how they can find NO Lyme positive

> > ALS patients ****when I can find them so easily and even ALS

> > patients themselves can see the connection. **

> >

> > * How about it Dr Steere, this is an open venue?

> >

> > * **Perhaps one of the Yale workers will read this ****and we

> > can enter into a debate that will explain why this

> > connection has been stalled for 12 years. ***

> > *

> > With best regards to all.

> >

> > * Dr Atkinson-Barr

> >

> >

> >

> >

> > -

> >

> >

>