From thisisms.com

[Guest guest]

Commentary on the NMSS position from www.thisisms.com

NMSS comes out against Low Dose Naltrexone for MS

Oh the plot thickens. The (US) National Multiple Sclerosis Society

has just published an article advising against the use of Low Dose

Naltrexone (LDN) for MS:

" May 2004—We have received a number of inquiries about the use of

low dose naltrexone as a treatment for multiple sclerosis. There are

no published clinical data to support the use of naltrexone in MS.

Naltrexone is an opioid antagonist that has been approved by the

U.S. Food and Drug Administration (FDA) since the early 1990s for

the treatment of addictions to opioids and alcohol. At significantly

lower doses, it has been marketed on the Internet as a treatment for

a variety of diseases, including various types of cancers, HIV/AIDS,

Parkinson's disease, Alzheimer's disease, amyotrophic lateral

sclerosis (ALS), emphysema, as well as MS and other autoimmune

diseases. There are, however, no published reports of placebo-

controlled clinical trials demonstrating the safety and efficacy of

naltrexone in any of these diseases. The marketing efforts rely

entirely on anecdotal reports.

Naltrexone is said to work in MS and other diseases by adjusting the

level of endorphins in the body to enhance immune function.

Enhancement of the immune system, however, is not recommended for

anyone with MS. Because MS is thought to be an autoimmune disease,

in which the immune system mistakenly attacks the myelin in the

central nervous system, the goal of currently approved treatments is

to inhibit the overactive immune response rather than boost it. In

fact, the one study of low dose naltrexone in experimental allergic

encephalomyelitis (EAE)-the animal model of MS-demonstrated a

disease worsening (Panerai et al. 1994. J Neuroimmunol 51(2):169-

176).

People with MS are advised to avoid any medication, dietary

supplement, or other treatment that is touted as strengthening the

immune response. "

Now while the points they make are certainly valid-- LDN does not

have any clinical trials proving its efficacy in MS-- they seem to

skew the argument to other extreme that LDN should not even be

considered as a valid therapy for MS. They speak as if the idea that

MS is an autoimmune disease, and thus would respond negatively to

something that " boosts " the immune system (LDN is said to " regulate "

the immune system, not boost it-- and neither of those theories has

been scientifically proven), is an established fact-- something This

is MS members know it is most definitely not.

Possibly the most disappointing issue is this: Of all the

alternative, non-CRAB medications we have seen for MS, LDN is the

one that most consistently seems to make people feel better, do

better, and possibly even reduces their progression. If the NMSS was

really interested only in the welfare of MS patients (as they are

trying to position this article), SOMEWHERE in this article of

theirs there should have been a call for an LDN trial to prove

conclusively one way or another whether this therapy works. But no

such mention exists. There is not even a mention of the LDN trial

for Crohn's Diseases (an auto-immune disease)currently going on in

Pennsylvania.

If there's enough interest in this drug that they feel compelled to

write an article about it, shouldn't they consider the possibility

that it actually works? Instead, they open the door, discredit the

treatment with possibly irrelevant/moot/controversial points, then

close the door as if there is no further discussion worth pursuing.

How truly sad-- we expected much better from one of the most

powerful MS societies in the world that, with its nearly $200M USD

annual budget, could fund an LDN study without batting an eye. I

urge all of our readers to write to the NMSS and ask them, " Why only

take a negative approach to a treatment that hundreds of MS'ers

swear by? It is fine to warn people to not take a treatment that

does not have clinical trials behind it, but does the possibility

that it actually works not exist according to the NMSS? "

In the interest of full disclosure (and not to set off conspiracy

theories), please note that the NMSS receieves significant funding

from the large drug companies that have a strong interest in

discouraging the use of a $30 USD/month therapy such as Naltrexone.

For proof of this connection, look no further than the NMSS' message

boards, which are overtly sponsored by Betaseron. In fact, from the

NMSS' own web site: " The Society receives grants from pharmaceutical

companies and other corporations for educational projects, under

strict guidelines to ensure impartial content, and accepts

sponsorships in exchange for exhibition space at national meetings. "

This gives us an opportunity to emphasize the reason our site

exists. This is MS does not receive $1 from any corporation-- you

can trust us to be on YOUR side and no one else's.

[Guest guest]

Interesting that in treating my wife's blood cancer, that does involve the B

cell side of the

immune system, we hear the same myth, that any " stimulation " of the immune

system must be bad

for myelomics.

In fact, the T cell side of the immune system is known to control monoclonal

abberations when

not overwelmed by numbers, or weakened by infection.

The thing I constantly hear is " the plural of anecdote is not data. But either

a breakthru

must occur w' the MS Society, or another group must be convinced to run the

medically accepted

tests.

-----Original Message-----

.............They speak as if the idea that MS is an autoimmune disease, and thus

would respond

negatively to something that " boosts " the immune system (LDN is said to

" regulate " the immune

system, not boost it-- and neither of those theories has been scientifically

proven), is an

established fact-- something This is MS members know it is most definitely

not...............

-----------End-----------

Blessed be the Lord, who daily loads us with benefits, even the God of our

salvation. Selah

(pause, consider this) Psalms 68:19

Don Schultz (no medical training, and not terribly bright)

Near Joliet IL. Husband and Caregiver to Barb Schultz, born '49

Dx'd June/01; IgA Kappa 5,880, B2M 7.8, Radiation to L3, Aredia now Zometa

monthly, 100mg

Thal daily & 40mgX4days monthly Dex thru Dec '01; Mar-Jun/02 2 rounds VAD no

effect, 2 rounds

DTPACE modest effect; autoSCT July/02 full remission in Sep/02. Interferon

Aug/02 to Jan 03;

Feb 03 HiDose Dex Failed, Velcade Phase3 trial Mar/03 complete response in 2

cycles, Jan 2004

Velcade failed, March 04 Revimid Phase 2 trial 30mg daily, May 04 Mspike 0.8 IgA

down to 420.

Ongoing PN from Thal, DFCI supplement regimine provides slight relief.

http://www.medhelp.org/NIHlib/GF-456.html

http://www.healthtalk.com/multiplemyeloma/diseasebasics.cfm

http://www.labtestsonline.org/

http://www.myeloma.org/

http://www.multiplemyeloma.org/