Re: JUST MAD

February 5, 2004

HI

YOU CALL THE DR. FOR AN APPT. HE WILL FAX (IF YOUR LUCKY ENOUGH TO HAVE

ONE) YOU THE PAPERS TO COMPLETE. YOU FAX THEM BACK TO THE DR. THEN YOU

MAKE YOUR APPT.

ONCE YOUR DONE WITH YOUR APPT.

THE DR. WILL FAX YOUR PERSC. TO THE PHARMACIST. THE PHARMACIST (OF YOUR

CHOICE) WILL MAIL IT TO YOU PRIORITY MAIL. AND THATS IT.

THE WHOLE PROCESS TOOK ME ABOUT A WEEK AND A HALF.

February 5, 2004

WE'RE AS MAD AS HELL AND WE AIN'T GONNA TAKE IT ANY MORE!

It's amazing, isn't it? Minor little detail, never been double blind tested. Like their double blind tests worked any better than the placebo level of 30%. I read a report recently, if I remember it correctly, that people on the Copaxone Placebo fared better than people ON one of the interferons.

I told my neuro I was going to be his guinea pig. He knew I was going to get it one way or another, and I guess he figured he gets to see me every 3 months if he gives it to me, or NONE if he don't. He made me sign a release that I am doing it against his recommendation and take responsibility for it. On my first follow up he tried to tell me that he let other people try it and they all stopped it, nobody else was still taking it. On my 2nd follow up visit I actually saw smiles on his face, I didn't think he knew how to do that in any of my previous visits, but then he said he still sees weakness in my left leg. Yeah, so do I. This last revisit he seemed very impressed and told me to come back in 4 months.

I'm hoping to get another MRI referral at that visit.

I also just ordered 28 tabs of 50 MG ReVia from medsmex.com and am going to see how it is to make it myself. Only planning to do one tab worth, which would be 12 days at 4.5. I'm still taking 3.0 caps and also have a fill for 4.5 which was filled as 1.5 caps so I can do 3 or 4.5. I still haven't done 4.5, but will be within the week. Tonight was my 296th dose of 3.0.

So there are other options, but it would be preferrable if you could get your neuro to write the script for you.

Good luck!

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

From: skraggz827

low dose naltrexone

Sent: Thursday, February 05, 2004 15:11

Subject: [low dose naltrexone] JUST MAD

Hey Everyone,I began this group in January. I saw my neurO on the 21st to ask about a script for LDN. He loooked aT me as if I grew a second head. At first, he didn't know what I was talking about and then stated I would be going from a proven treatment to an unproven treatment. Needless to say, he did not give me a script but referred me to rehab and a neuro eye doctor. I saw the rehad doctor yesterday and his only comeback was to try a different muscle relaxant. I saw my family doctor today and she is not comfortable writing it because she feels it is the neuro's job. Why the run around? I have been on Avonex, Betaseron and now Novantrome. If these are "so called" proven, what was the need to keep changing to a different med? What is the problem with allowing a person to try something different? Do they get a kickback from the drug companies? I know my insurance company paid $1200/month for the betaseron and the Novantron is about $1800 each infustion not including doctor visits and blood work The heart scan was about $2000The ABC's can lead to greater depression, the Novantrone can lead to heart damage, the new muscle relaxant could lead to liver damage. But theae are all proven treatments. I am not ready to lie down without a fight. This is my life, my health and my sanity.My next step wil be to call one of the doctors for a phone consultation. My question is how long is the process of setting it up, talking to them and getting your prescripttions. Please advise. I am sorry for the length of this but I am just mad at the moment.

February 6, 2004

I had the same experience as you and called this AM to start the process

for a phone consult.

dan

> [Original Message]

> From: skraggz827 <skraggz827@...>

> <low dose naltrexone >

> Date: 2/5/2004 1:14:58 PM

> Subject: [low dose naltrexone] JUST MAD

>

> Hey Everyone,

>

> I began this group in January. I saw my neurO on the 21st to ask

> about a script for LDN. He loooked aT me as if I grew a second

> head.

> At first, he didn't know what I was talking about and then stated I

> would be going from a proven treatment to an unproven treatment.

> Needless to say, he did not give me a script but referred me to rehab

> and a neuro eye doctor. I saw the rehad doctor yesterday and his

> only comeback was to try a different muscle relaxant. I saw my

> family doctor today and she is not comfortable writing it because she

> feels it is the neuro's job.

>

> Why the run around? I have been on Avonex, Betaseron and now

> Novantrome. If these are " so called " proven, what was the need to

> keep changing to a different med? What is the problem with allowing a

> person to try something different? Do they get a kickback from the

> drug companies? I know my insurance company paid $1200/month for the

> betaseron and the Novantron is about $1800 each infustion not

> including doctor visits and blood work The heart scan was about $2000

>

> The ABC's can lead to greater depression, the Novantrone can lead to

> heart damage, the new muscle relaxant could lead to liver damage.

> But theae are all proven treatments. I am not ready to lie down

> without a fight. This is my life, my health and my sanity.

>

> My next step wil be to call one of the doctors for a phone

> consultation. My question is how long is the process of setting it

> up, talking to them and getting your prescripttions. Please advise.

> I am sorry for the length of this but I am just mad at the moment.

>

> Thanks Everyone

>

February 6, 2004

Here is my LDN Doc, Scraggs...hope it helps you....Love, Sally

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Dr is just like any other good doc...

FIRST: Call and make a phone appointment...

2ND: He will expect you to fill out an application (Medical

history stuff) you do not need to forward medica records.

This is all done by mail or fax, if you are lucky to have one...

> >

3RD: You will call Dr. on your appointment time(don't

forget time difference, eastern, pacific, central, mountain)

> >

4TH: Dr. will fax your script to the Prescription Center

(You must call the Prescription Center to give them your Credit card

#) (as well as the Dr), and they will ship your meds to you.

> >

That's it in a nutshell.

> >

Dr. usually starts you out on 3mg for a month and then

4.5mg the second month. (he gives you 2 months the first appt.) Then

you call him before 2nd month is over, so you don't run out of ldn,

and he will see how you're doing, and what doseage you feel

comfortable with, and then give you 6 month script.

> >

My 1st charge was $85.00 and 2nd appointment was $50.00. He was

very reasonable as is the Prescription Center. Dr is a nice

guy I think you will like him. He doesnt quite give you the

attention and time of Dr Bahari, and of course, not as

knowledgeable, but who is???

> >

God Bless you.

Sally

> >

Dr. (in Wisconsin) 1-608-785-0038

The Prescription Center (Wisconsin) 1-800-203-9066

I am in Ohio, but I got the Prescription Center from LDN site,

and they gave me Dr. s name.

> >

I had a phone consult with him and he faxed the prescription for

ldn to prescription center and they shipped to me USmail or you can

have them do UPS at an extra charge.

> >

The 3mg capsules are $20.00 per month and Dr 's first

charge was $85.00........NOW 125.00

A lot less expensive than Dr Bahari.

I hope this helps you.

Sally

February 6, 2004

>I have a good

>friend who just died from cancer that could have been cured by

>conventional

>therapies but went " holistic and organic " instead, which his doctors

..certainly didn't want.

How can you say for sure that conventional therapies would

have 'cured' him? My brother-in-law just died of leukemia, and where

was he when he died? in a hospital!!!!! How much more conventional

can you get?

February 6, 2004

Okay, my turn for a long post, of what increasingly appears to be the

minority opinion:

> > Why the run around? I have been on Avonex, Betaseron and now

> > Novantrome. If these are " so called " proven, what was the need to

> > keep changing to a different med?

Because not all of them work with all people. MS is a very individual kind

of disease. And for some people, none of them are going to work. The numbers

are out there; this is not a secret. Also, as the disease progresses,

different measures are needed.

What is the problem with allowing a

> > person to try something different? Do they get a kickback from the

> > drug companies? I know my insurance company paid $1200/month for the

> > betaseron and the Novantron is about $1800 each infustion not

> > including doctor visits and blood work The heart scan was about $2000.

I grew up with the medical community. My late father was a doctor. It is NOT

just a matter of getting kickbacks. Maybe some medical people do, but I

firmly believe it's a matter of (a) wanting to act responsibly by giving

someone a drug that has been tested in clinical trials, and ( the fact

that patients who want to follow their own lead, and go against medical

advice, can easily turn around and sue the pants off their doctors for being

directly involved in letting them do so. And believe me, they do. The same

person so wild to try something untested will, when it doesn't work and they

get much worse, suddenly cry, " But my doctor is a professional! Why did he

let me do it? "

Now, do I think that people should have the right to go against medical

advice and still get scrips? Yes, I do. However, until there are better

safeguards against malpractice suits, I think doctors are going to continue

to be reluctant to do that. And I also think that many of them will still

refuse on an ethical basis, because they don't feel that alternative

treatments are safe or effective. I can't blame them for that. I have a good

friend who just died from cancer that could have been cured by conventional

therapies but went " holistic and organic " instead, which his doctors

certainly didn't want.

Ethics are a question each person has to work out for himself or herself.

For instane, doctors who diagnose by phone and prescribe whatever the

patient so obviously wants may be viewed as unethical by some. Others find

them to be ethical by allowing the patient more control over his or her

life. This is a very individual thing.

> > The ABC's can lead to greater depression, the Novantrone can lead to

> > heart damage, the new muscle relaxant could lead to liver damage.

> > But theae are all proven treatments. I am not ready to lie down

> > without a fight. This is my life, my health and my sanity.

Yes, the ABCRs have side effects, and those are spelled out. Novantrone can

lead to heart damage, but the evidence so far is that this is a small

fraction of Novantrone users, and the one fatality I know about occurred

with a patient who lied about previous treatment and thus exceeded the

maximum lifetime dose. (Again, a case of a patient who decided to go against

medical advice. Sometimes it works, and sometimes it gets you killed.)

Yes, it is your life, your health, and your sanity. I have those same

feelings about my own life. But please, while I understand your being angry,

do stop and realize that your doctors have been through eight to twelve

years of grueling education and training. LDN apparently comes without side

effects or big expense. It also comes without any clinical studies to

support its effectiveness in slowing your disease. Anecdotal data is

encouraging, but that isn't going to be enough for some patients and

likewise not good enough for some doctors. It's your decision to make, yes,

but I don't think there is some massive conspiracy among doctors to keep it

away from patients. I think it's a matter of it simply not being well

supported enough for them to be willing to prescribe it. And for the patient

making choices, it's a trade-off between such factors as expense and side

effects versus the documented stats on the approved therapies' success

rates.

I take LDN, and I also take Novantrone. I'm well aware of the different

risks I run with each of them, and I look forward to the day that we can

have clinical trials of LDN to far better assess its effectiveness.

Galoux

February 6, 2004

Very nice Larry,

This is the lead people need to see, and base their own choices on. If anyone needs more than words like this, they're just not looking, or 'seeing'!

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

From: LarryGC

low dose naltrexone

Sent: Friday, February 06, 2004 9:01 AM

Subject: Re: [low dose naltrexone] JUST MAD

EXCELLENT!!!

I'd say you're on the money there... it's not that they're keeping it from people, they're just in a situation, that in recent years, makes them more fearful than anything else going against what is approved and acceptable.

If you've done research into EVERYTHING that's available that "may" work, you probably already found most claims have PAYPAL BUTTONS right next to them. WE CAN MAKE YOU HEALTHY: $2000.

LDN is the first, maybe the only, thing I found that 1. agrees with my idea of a medicine, 2. isn't being hawked, 3. not even being SOLD by the doctor who has the original patients (yes, and patents), 4. doesn't have to be ordered from ONE place OR many places that all link back to one main site (like Risotriene), 5. the dose is lower than the DUST I breath in hourly, 6. the cost is less than less than 1/2 a cup of coffee, 7. the people I heard about it from were MS Patients like me, 8. my neuro snickered and said "it's harmless, but I can't let you try it" the first time I saw him, 9. the next time I saw him, he said he'll consider it, if I got the 'protocol', 10. my own neuro gave me my scripts and made changes as per my requests, 11. all 3 of my chiropractors and other professionals I discussed it with were all in agreement that I should "go for it"... and all this was BEFORE I even tried it.

Since I tried it, 296 days and counting, if I never get any better than I am now, that's FINE with me. My worst day(s) on LDN were better than my BEST days for 13+ months prior. 11 months ago I thought my life and freedoms were nearing an end, 9 months ago I saw things differently.

Those who are driven to seeking LDN >will< get it. If that's their goal, then it's just a matter of time and effort.

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

From: Bou

low dose naltrexone

Sent: Friday, February 06, 2004 10:33

Subject: Re: [low dose naltrexone] JUST MAD

Okay, my turn for a long post, of what increasingly appears to be theminority opinion:> > Why the run around? I have been on Avonex, Betaseron and now> > Novantrome. If these are "so called" proven, what was the need to> > keep changing to a different med?Because not all of them work with all people. MS is a very individual kindof disease. And for some people, none of them are going to work. The numbersare out there; this is not a secret. Also, as the disease progresses,different measures are needed.

......

Yes, it is your life, your health, and your sanity. I have those samefeelings about my own life. But please, while I understand your being angry,do stop and realize that your doctors have been through eight to twelveyears of grueling education and training. LDN apparently comes without sideeffects or big expense. It also comes without any clinical studies tosupport its effectiveness in slowing your disease. Anecdotal data isencouraging, but that isn't going to be enough for some patients andlikewise not good enough for some doctors. It's your decision to make, yes,but I don't think there is some massive conspiracy among doctors to keep itaway from patients. I think it's a matter of it simply not being wellsupported enough for them to be willing to prescribe it. And for the patientmaking choices, it's a trade-off between such factors as expense and sideeffects versus the documented stats on the approved therapies' successrates.

February 6, 2004

Both Conventional and Alternatives should be combined for best

results....bridging the two..when i was diagnosed with breast cancer I

wanted to know what they were using in every country on the world .......not

just North America.......keeping an open mind ..and using the best of

both...trouble is it is CONFUSING.....thats why groups like this are so

important we can sort it out...Sandy

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

From: " " <davizona@...>

Sent: Friday, February 06, 2004 10:33 AM

Subject: [low dose naltrexone] Re: JUST MAD

> >I have a good

> >friend who just died from cancer that could have been cured by

> >conventional

> >therapies but went " holistic and organic " instead, which his doctors

> .certainly didn't want.

>

> How can you say for sure that conventional therapies would

> have 'cured' him? My brother-in-law just died of leukemia, and where

> was he when he died? in a hospital!!!!! How much more conventional

> can you get?

>

February 6, 2004

EXCELLENT!!!

I'd say you're on the money there... it's not that they're keeping it from people, they're just in a situation, that in recent years, makes them more fearful than anything else going against what is approved and acceptable.

If you've done research into EVERYTHING that's available that "may" work, you probably already found most claims have PAYPAL BUTTONS right next to them. WE CAN MAKE YOU HEALTHY: $2000.

LDN is the first, maybe the only, thing I found that 1. agrees with my idea of a medicine, 2. isn't being hawked, 3. not even being SOLD by the doctor who has the original patients (yes, and patents), 4. doesn't have to be ordered from ONE place OR many places that all link back to one main site (like Risotriene), 5. the dose is lower than the DUST I breath in hourly, 6. the cost is less than less than 1/2 a cup of coffee, 7. the people I heard about it from were MS Patients like me, 8. my neuro snickered and said "it's harmless, but I can't let you try it" the first time I saw him, 9. the next time I saw him, he said he'll consider it, if I got the 'protocol', 10. my own neuro gave me my scripts and made changes as per my requests, 11. all 3 of my chiropractors and other professionals I discussed it with were all in agreement that I should "go for it"... and all this was BEFORE I even tried it.

Since I tried it, 296 days and counting, if I never get any better than I am now, that's FINE with me. My worst day(s) on LDN were better than my BEST days for 13+ months prior. 11 months ago I thought my life and freedoms were nearing an end, 9 months ago I saw things differently.

Those who are driven to seeking LDN >will< get it. If that's their goal, then it's just a matter of time and effort.

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

From: Bou

low dose naltrexone

Sent: Friday, February 06, 2004 10:33

Subject: Re: [low dose naltrexone] JUST MAD

Okay, my turn for a long post, of what increasingly appears to be theminority opinion:> > Why the run around? I have been on Avonex, Betaseron and now> > Novantrome. If these are "so called" proven, what was the need to> > keep changing to a different med?Because not all of them work with all people. MS is a very individual kindof disease. And for some people, none of them are going to work. The numbersare out there; this is not a secret. Also, as the disease progresses,different measures are needed.

......

Yes, it is your life, your health, and your sanity. I have those samefeelings about my own life. But please, while I understand your being angry,do stop and realize that your doctors have been through eight to twelveyears of grueling education and training. LDN apparently comes without sideeffects or big expense. It also comes without any clinical studies tosupport its effectiveness in slowing your disease. Anecdotal data isencouraging, but that isn't going to be enough for some patients andlikewise not good enough for some doctors. It's your decision to make, yes,but I don't think there is some massive conspiracy among doctors to keep itaway from patients. I think it's a matter of it simply not being wellsupported enough for them to be willing to prescribe it. And for the patientmaking choices, it's a trade-off between such factors as expense and sideeffects versus the documented stats on the approved therapies' successrates.

February 6, 2004

> How can you say for sure that conventional therapies would

> have 'cured' him? My brother-in-law just died of leukemia, and where

> was he when he died? in a hospital!!!!! How much more conventional

> can you get?

First, I am sorry for the death of your brother-in-law. Second, I cannot say

*for sure* that he would have lived, because I am not G-d. People still die

from cancer all the time. But my friend's particular form of cancer was one

that has an extremely high and *proven* rate of being cured by conventional

therapies, whereas eating an all-organic diet hasn't been proven to do

anything for curing it. He had bought into the whole " doctors and hospitals

are evil " routine, and that's why he went with a " natural " approach. By the

time he did seek help from doctors and went into the hospital, the tumor was

huge and the cancer completely out of control. He spent the last days of his

life regretting his choice.

Galoux

February 6, 2004

Thanks, Larry. And I much appreciate your points that a lot of the "alternative" therapies are raking in the bucks, something I have had group members mention to me only offlist until now. I have had the same experience you have had of doing Google searches and finding the order buttons that link back to the same place. Sometimes I do find alternative therapies that seem to actually have some decent backing behind them and whose name I find mentioned in something other than adverts or the site of a group pushing a political agenda--Immunocal is one that I actually found cited in the literature numerous times.

I didn't have to show my neurologist anything. She already knew about LDN and had patients on it. I think she'd object if I wanted to be on LDN only, without having tried Novantrone first. She objected when I wanted to be on Betaseron instead, because I have progressive MS, but she left that choice up to me. I don't know if she'd have prescribed LDN only, but she's let me know that if I want to quit Novantrone, I can.

I think a lot of doctors are willing to prescribe if a patient will show them written data. And if not, then seek someone else.

I thought of something else in re the subject of kickbacks. If that allegation were true in most instances, then why are so many doctors reluctant to diagnose MS? It took me four years and four doctors who didn't follow up with appropriate tests before I was diagnosed. This is a HUGE complaint among people who have finally been diagnosed and those who believe they have MS and are in limbo. It's very widespread. So if doctors, were getting these big kickbacks from the makers of ABCRs, wouldn't they be a lot more anxious to be making MS diagnoses quickly?

Galoux

February 6, 2004

Galoux,

I understood your first statement, and what you meant by it. I suspect that

many " got it " ,

perhaps even including the person who lost his brother in law. I don't think

that where one

expires is necessarily proof of what their choices were concerning treatment.

It is my observation that, by the time one has active growing caner, diet

adjustments may

provide support to " conventional " care, but don't often replace it.

A merry heart doeth good like a medicine: but a broken spirit drieth the bones.

Proverbs 17:22

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 6X now Zometa

monthly,

100mg Thal daily & 40mgX4days pulsed Dex thru Dec '01 when failed; Mar-Jun/02 2

rounds VAD no

effect & 2 rounds DTPACE modest effect; autoSCT July/02 full remission in

Sep/02. Interferon

maint' Aug/02 to Jan 03; Jan 03 IgA climbing; Feb 03 Hi dose Dex Failed,

Velcade Phase3

trial Mar/03, IgA down 99% after 2 cycles, After 8 cycles of phase3 trial IgA

below normal.

Dec/03 now in 2nd Continuation phase, M-spike 0.1 and still going down!, 1

liter saline

minimizing fluish side effects. Taking DFCI supplement regimen to minimize

Velcade PN.

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

salvation. Selah

(pause, consider this) Psalms 68:19

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

http://www.labtestsonline.org/

http://www.myeloma.org/

http://www.multiplemyeloma.org/

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

From: Bou [mailto:lswillia@...]

Sent: Friday, February 06, 2004 10:19 AM

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: JUST MAD