LDN and ALS

[Guest guest]

Hi:

Weeks ago I ask the group if LDN really works for ALS, because I was

going to talk about it to a friend that was doing nothing for his

illness.

Now he has 4 days taking it and his breathing has improved a lot, he is

talking faster, he is sleeping all night(he had almost 2 years waking

at 2-3am), he take naps during the day, a total outcome.

I feel great for him and because I put LDN on his road.

Thanks to you all for your advices

Guillermo

[Guest guest]

I have a close relative who has just been diagnosed with ALS. I have two

questions for the group. First, does anyone know if LDN is helpful in the

treatment of ALS? Also, is there a doctor in the Richmond, VA area who is

willing to prescribe LDN?

[Guest guest]

It definitely can be of help with ALS - see

http://www.low dose naltrexone.org/others.htm#PLS2007 I know of a number

of people who have been helped significantly both symptom improvement

wise (a bonus!) and progression wise. That said, it is a mongrel of a

disease and for some the LDN doesn't seem to help unfortunately. Can't

help with a doctor but email Crystal (angelindisguise67 at ).

Mr Philip Flournoy wrote:

> I have a close relative who has just been diagnosed with ALS. I have two

> questions for the group. First, does anyone know if LDN is helpful in the

> treatment of ALS? Also, is there a doctor in the Richmond, VA area who is

> willing to prescribe LDN?

>

[Guest guest]

Regarding LDN and ALS. I was diagnosed in 2001 with RRMS. My neuro

recommended Copaxone. Did my own research, and decided on LDN.

After about six months of use, about 95% of MS affects were gone. I

started in May of 2002. I lead a very normal life until Sept. of

2007. Started having new symptoms. Early stages of ALS. Methodiost-

Houston has confirmed that I never had MS. My symptoms in 2001 were

probably ALS, as there is no other explanation for them. My ALS has

progressed, have lost the use of my left arm and have severve

dysphagia. Can no longer talk clearly. I am still taking the LDN,

and will not stop. The ALS clinic at MEthodist-Houston has taken an

interest in my story, and wonder if this is why I was symptom free

for 5+ years. In my opinion, trying LDN for ALS could not hurt.

What do you have to loose. 6 years on LDN, and all i have gotten

from it is a signifigantly better quality of life. No side effects,

no problems caused by it. Hope this helps. Email if I can be of

assistance.

Guy

> > I have a close relative who has just been diagnosed with ALS. I

have two

> > questions for the group. First, does anyone know if LDN is

helpful in the

> > treatment of ALS? Also, is there a doctor in the Richmond, VA

area who is

> > willing to prescribe LDN?

> >

>

[Guest guest]

Have you checked into Hyperbaric Oxygen Therapy as an additional therapy? Please check out the following website: www.harchhyperbarics.com. Dr. Harch has written a book called the Oxygen Revolution, really worth getting. This therapy could give more of a fighting edge with LDN against ALS.Destinyamdv11@... wrote: From: blueswede06 <blueswede06 > Date: 2008/09/02 Tue AM 11:29:41 CDT low dose naltrexone Subject: [low dose naltrexone] Re: RE:LDN AND ALS NOMOREMAIL Regarding LDN and ALS. I was diagnosed in 2001 with RRMS. My neuro recommended Copaxone. Did my own research, and decided on LDN. After about six months of use, about 95% of MS affects were gone. I started in May of 2002. I lead a very normal life until Sept. of 2007. Started having new symptoms. Early stages of ALS. Methodiost- Houston has confirmed that I never had MS. My symptoms in 2001 were probably ALS, as there is no other explanation for them. My ALS has progressed, have lost the use of my left arm and have severve dysphagia. Can no longer talk clearly. I am still taking the LDN, and will not stop. The ALS clinic at MEthodist-Houston has taken an interest in my story, and wonder if this is why I was symptom free for 5+

years. In my opinion, trying LDN for ALS could not hurt. What do you have to loose. 6 years on LDN, and all i have gotten from it is a signifigantly better quality of life. No side effects, no problems caused by it. Hope this helps. Email if I can be of assistance. Guy > > I have a close relative who has just been diagnosed with ALS. I have two > > questions for the group. First, does anyone know if LDN is helpful in the > > treatment of ALS? Also, is there a doctor in the Richmond, VA area who is > > willing to prescribe LDN? > > >

[Guest guest]

You certainly want to test for lyme disease as it can mimic ALS and

liver toxicity may be a culprit also.

The new kid on the block is Borrelia Burgdorferi (Bb) and some of us

have looked at it for a long time as possibly the bug that opens the

door for all the other infections to enter the system. Lyme disease

has become a buzzword in the alternative medical field.

Many patients with MS, ALS, Parkinson's disease, autism, joint

arthritis, chronic fatigue, Alzheimer's disease, sarcoidosis and even

cancer are infected with Borrelia burgdorferi. But is the infection

causing the illness or is it an opportunistic infection simply

occurring in people weakened by other illnesses.

Conditions most commonly seen with Lyme disease include Alzheimer's

disease, amyotrophic lateral sclerosis (ALS), chronic fatigue

syndrome (CFS), fibromyalgia, irritable bowel syndrome, lupus,

rheumatoid arthritis, scleroderma, multiple sclerosis (MS),

Parkinson's disease and various autoimmune disorders.

Most Common Diseases Associated with Lyme

ALS

Chronic Fatigue Syndrome (CFS)

Rheumatoid Arthritis

Fibromyalgia

Irritable Bowel Syndrome

Multiple Sclerosis

Lupus

Parkinson's Disease

Scleroderma

Polymyalgia rheumatica

Reflex sympathetic dystrophy

Bell's Palsy

Syphilis

Depression

Autoimmune Disorders

Middle Ear Pressure

Tinnitus

Vertigo

Alzheimer's Disease

Borrelia Burgdorferi(Bb) tends to infect the B-lymphocytes and other

components of the immune system which are responsible for creating

the antibodies, which are then measured by an ELISA test or Western

Blot test. Since antibody production is greatly compromised in

infected individuals, it makes no sense to use these tests as the

gold standard or benchmark for the presence of Bb (7). We also are

aware that in endemic areas in the US up to 22% of stinging flies and

mosquitoes (2, 8, 9,10) are carriers of Bb and co-infections.. In

South East Germany and Eastern Europe, 12 % of mosquitoes have been

shown to be infected. Also many spiders, flees, lice and other

stinging insects carry spirochetes and co-infections.

Making the history of a tick bite a condition for a physician to be

willing to even consider the possibility of a Bb infection seems

cynical and cruel.

To use conventional diagnostic tests such as the Western Blot, one

has to think in paradoxes: the patient has to be treated with an

effective treatment modality first before the patient recovers enough

to produce the antibodies, which then are looked for in the test. A

positive Western Blot proves that the treatment given worked to some

degree.

A negative Western Blot does not and cannot prove the absence of the

infection.

Having taken another route altogether, we have recognized the

following:

Today many if not most Americans are carriers of the infection. Most

infected people are symptomatic, but the severity and type of the

symptoms varies greatly. The microbes often invade tissues that had

been injured: your chronic neck pain or sciatica really may be a Bb

infection. The same may be true for your chronic TMJ problem, your

adrenal fatigue, your thyroid dysfunction, your GERD and many other

seemingly unrelated symptoms.

In most places the diagnosis of an active Bb infection is made only,

if the symptoms are severe, persistent, obvious.

BEST LYME DIAGNOSTIC TOOL. FIND A DOCTOR WITH THE BRADFORD VARIABLE

PROJECTION MICROSCOPE in or around your city.

Bradford High Resolution Microscopy

(Bradford Variable Projection Microscope): Both the cyst and

spirochete forms in the three different morphologies are easily

identified with resolutions less than 0.1 micron with concurrent

magnification of 10,000x utilizing dark-field and phase contrast

modes.

Comparison of Tests: High Resolution Microscopy is the most reliable

test............. PCR, Western Blot and ELISA are the LEAST reliable

with up to 80% false-negatives (CDC Guidelines).

Comparison of Detection Methods

The Centers for Disease Control (CDC) in Atlanta, Georgia, has issued

guidelines for Lyme patients, advising them of a recommended protocol

in attempting to establish whether Lyme disease is present or not.

Doctors have been instructed by these guidelines to obtain an ELISA

test first, which, under the best circumstances, identifies only 40-

50% of those who actually have Lyme disease. An ELISA should NOT be

used as a screening test due to the unreliable results. The

guidelines then state that, if the ELISA test is positive, doctors

are to perform the Western Blot test. This procedure allows many

cases of Lyme disease to be missed, therefore patients are not being

identified or properly treated. The CDC guidelines also state which

specific bands on a nitrocellulose strip are to be used in

considering a test positive. When the list of bands was developed,

certain bands specific for Lyme disease were not included. When these

bands are positive, they confirm exposure to the causative organism,

but it is mistakenly reported to the doctor and patient as

a " negative test. " Many borderline tests are reported to patients as

being negative and many positive tests are reported to be " false-

positive " because doctors are not familiar with reading test results,

nor with the multiple symptoms that can occur in a person with Lyme

disease.

Solution to Detection Problem

The Bradford High Resolution Blood Morphology imaging, known as

Bradford Variable Projection Microscope of both Lyme spirochete and

cyst forms have proven to be highly accurate.

The various cyst forms are found in B-cells, eosinophils, basophils,

with and without the spirochete.

The detection of Lyme disease by the Bradford High Resolution

Microscope is highly correlated with the Fluorescent Antibody Test

(FDA-licensed Bowen Laboratories, Florida)

Lyme Disease Testing- Bowen Research and Training Institute

http://www.bowen.org/NewSite/LimeDisease.html

Diagnostic Tests: Bowen Q-RIBb Test for Lyme Disease - User ratings &

reviews - Revolution Health

http://www.revolutionhealth.com/drugs-treatments/rating/diagnostic-

tests-bowen-q-ribb-test-for-lyme-disease

Lyme Disease:

http://www.defeatautismyesterday.com/lyme.htm

Lyme Disease and Low Dose Naltrexone (LDN)

http://www.lymebook.com/lyme-disease-low-dose-naltrexone-ldn

[Guest guest]

Lyme may be the real culprit here.

Getting tested for lyme via IGeneX Lab, Fry Lab or Bowen Lab would be

best. I think Bowen is the cheapest.

===================

> > Regarding LDN and ALS. I was diagnosed in 2001 with RRMS. My

neuro

> > recommended Copaxone. Did my own research, and decided on LDN.

> > After about six months of use, about 95% of MS affects were gone.

I

> > started in May of 2002. I lead a very normal life until Sept. of

> > 2007. Started having new symptoms. Early stages of ALS.

Methodiost-

> > Houston has confirmed that I never had MS. My symptoms in 2001

were

> > probably ALS, as there is no other explanation for them. My ALS

has

> > progressed, have lost the use of my left arm and have severve

> > dysphagia. Can no longer talk clearly. I am still taking the

LDN,

> > and will not stop. The ALS clinic at MEthodist-Houston has taken a

970

n

> > interest in my story, and wonder if this is why I was symptom free

> > for 5+ years. In my opinion, trying LDN for ALS could not hurt.

> > What do you have to loose. 6 years on LDN, and all i have gotten

> > from it is a signifigantly better quality of life. No side

effects,

> > no problems caused by it. Hope this helps. Email if I can be of

> > assistance.

> >

> > Guy

>

[Guest guest]

Hi,

below I have copied and pasted three different earlier answers on LDN and ALS.

Why not give LDN a try? It's a win - win situation if it works on your friend.

Re your question about a prescribing doctor in your area:

please, contact Crystal to know:

Write to Crystal and see if she can help you with finding a physician. She keeps an ongoing list of both MDs and pharmacies for all of us in this forum: angelindisguise67@...

Good luck, from Ingrid :-)

========================================================================

I know of several people with ALS for whom LDN made a significant difference, slowing their progression and making them feel stronger. However, I also know of some who it didn't seem to help, which I guess is not surprising given how nasty ALS is and how quickly it can progress. Given the low cost and minimal/no side effects I'd be tempted to keep on using it anyway.Alternatively, if for peace of mind you'd like to know whether it really is making a difference or not, then ensuring you have at least enough left to last you until you can get another order of it in stop taking it for a while. If you start feeling worse get back on it immediately. If you notice no difference then you know.The only thing I'd suggest is do everything you can to rule out Lyme disease as that can mimic ALS and typically does not respond to LDN, hence could be the real reason the LDN doesn't seem to be working.

=======================================================================

Hi:Weeks ago I ask the group if LDN really works for ALS, because I was going to talk about it to a friend that was doing nothing for his illness.Now he has 4 days taking it and his breathing has improved a lot, he is talking faster, he is sleeping all night(he had almost 2 years waking at 2-3am), he take naps during the day, a total outcome.I feel great for him and because I put LDN on his road.Thanks to you all for your advices Guillermo

=================================================================

I have been taking LDN to slow the progression of my ALS for less thana year. It is hard to know if it is really making a difference. Thedisease has progressed more than I would like, and I'd be interestedto know if anyone with ALS has really felt that LDN has made a difference.

=====================================================================

[low dose naltrexone] RE:LDN AND ALSI have a close relative who has just been diagnosed with ALS. I have twoquestions for the group. First, does anyone know if LDN is helpful in thetreatment of ALS? Also, is there a doctor in the Richmond, VA area who iswilling to prescribe LDN?------------------------------------

[Guest guest]

Inexpensive and safe, why not?SterlingFrom: Burd27 <burd27@...>Subject: [low dose naltrexone] LDN and ALSlow dose naltrexone Date: Wednesday, September 29, 2010, 5:29 AM

Reading through various websites, I see that LDN is very beneficial for people suffering from many conditions. However, those with ALS maybe no so. There appears to be benefit for those with the rare form of ALS called PLS, but other forms don't seemed to be mentioned. Is that because it hasn't helped?

I have ALS Bulbar onset. Is LDN something that I should be looking at?

Thanks,

Burd.