Re: Re: for those considering taking low dose naltrexone

[Guest guest]

Hi,

Is your wife using this (LDN) for dermatomyositis (DM)? Sorry - new member, just

want to make sure I am getting all the abbreviations.

Thanks

Chris

________________________________

From: jtubman77 <jtubman@...>

rheumatic

Sent: Friday, September 4, 2009 2:17:30 AM

Subject: rheumatic Re: for those considering taking low dose naltrexone

>

>

> From: soheila A <soadl80@... >

> Subject: Re: rheumatic for those considering taking low dose naltrexone

> rheumatic@grou ps.com

> Date: Wednesday, September 2, 2009, 2:05 PM

>

>

>

>

>

>

>

> I have been on AP for two years and half. Found about low dose naltrexone

(LDN) benefits for autoimmune diseases through LDN group. I ask my doctor

(Rheumatologist) to prescribed it for me. He did. I have been taking LDN for

more than a year , it gives me lots of energy and lowered my ESR somehow.

> I saw my docrtor today. He told me that he prescribed LDN for some of his

patients and they are happy with the result. I guess it is worthy to give LDN a

try while you are on AP.

> soheila

>

>

>

>

[Guest guest]

Is anyone taking LDN for RA and is it working? I have been taking minocin

since Jan 09 and now my toe has a green/black spot so probably have to go off if

it. Thanks

> rheumatic

> From: tisch29@...

> Date: Fri, 4 Sep 2009 12:16:40 -0700

> Subject: Re: rheumatic Re: for those considering taking low dose naltrexone

>

> Hi,

>

> Is your wife using this (LDN) for dermatomyositis (DM)? Sorry - new member,

just want to make sure I am getting all the abbreviations.

>

> Thanks

> Chris

>

>

>

> ________________________________

> From: jtubman77 <jtubman@...>

> rheumatic

> Sent: Friday, September 4, 2009 2:17:30 AM

> Subject: rheumatic Re: for those considering taking low dose naltrexone

>

>

>

> >

> >

> > From: soheila A <soadl80@... >

> > Subject: Re: rheumatic for those considering taking low dose naltrexone

> > rheumatic@grou ps.com

> > Date: Wednesday, September 2, 2009, 2:05 PM

> >

> >

> >

> >

> >

> >

> >

> > I have been on AP for two years and half. Found about low dose naltrexone

(LDN) benefits for autoimmune diseases through LDN group. I ask my doctor

(Rheumatologist) to prescribed it for me. He did. I have been taking LDN for

more than a year , it gives me lots of energy and lowered my ESR somehow.

> > I saw my docrtor today. He told me that he prescribed LDN for some of his

patients and they are happy with the result. I guess it is worthy to give LDN a

try while you are on AP.

> > soheila

> >

> >

> >

> >

[Guest guest]

Jim:

 

  I also have DM and am on minocin and lots of supplements.  Just started about

a month ago - was dx in Feb 09 and this is only treatment so far.

 

I've been having a pretty rapid decline in past couple weeks - I'm very weak and

muscles burn if do simplest thing like dry my hair. I'm also very inflammed

- including my throat so much that it makes it hard to swallow.   My skin is

terrible and very itchy.  In fact it keeps me from sleeping well.  Does the LDN

help with you wife's rash & inflammation?

 

Thanks, Char 

From: jtubman77 <jtubman@...>

Subject: rheumatic Re: for those considering taking low dose naltrexone

rheumatic

Date: Sunday, September 6, 2009, 11:42 PM

 

Hi

Yes my wife kathryn is taking LDN (Low Dose Naltrexone) at 4 mg per night for

Dermatomyositis (DM), and yes it has helped her muscle strength and mobility and

energy (while reducing pain and inflamation) , and she continues to improve. A

wonderful and safe drug for DM.

Jim and kathryn

> >

> >

> > From: soheila A <soadl80@ >

> > Subject: Re: rheumatic for those considering taking low dose naltrexone

> > rheumatic@grou ps.com

> > Date: Wednesday, September 2, 2009, 2:05 PM

> >

> >

> >

> >

> >

> >

> >

> > I have been on AP for two years and half. Found about low dose naltrexone

(LDN) benefits for autoimmune diseases through LDN group. I ask my doctor

(Rheumatologist) to prescribed it for me. He did. I have been taking LDN for

more than a year , it gives me lots of energy and lowered my ESR somehow.

> > I saw my docrtor today. He told me that he prescribed LDN for some of his

patients and they are happy with the result. I guess it is worthy to give LDN a

try while you are on AP.

> > soheila

> >

> >

> >

> >

[Guest guest]

Jim:

 

Thanks so much for responding and sharing 's story.  I am alarmed at how

fast I'm deteriorating.  Just 2 weeks ago I could still go to the grocery store,

run errands, etc.  Now I can barely get up to get my kid's lunch ready.

 

I saw Dr. Franco in Calif (I'm in Colo) and he started me on supplements and

minocin in Sept.  I just found a wonderful doc here in Colo who also treats w/

minocin and provocation/neutralization which I think helps identify the cause. 

Dr. Franco did test me for mycoplasam and it was negative, but he said was 

inconclusive b/c test doesn't pick up all of them. Also negative for Lyme.  My

doc here suspects mercury poisoning/dental stuff.  He's ordered metals testing

and we're awaiting results.   He helped me realize my symptoms first started

when I was having lots of dental work done - we shall see.

 

So your wife's rash hasn't improved?  Mine drives me absolutely crazy - I can't

sleep b/c of it and have started taking sleeping pills which I hate and still

don't sleep through the night. 

 

I need to read more about LDN - are there side effects?  You also mentioned

Alpha Lipoic Acid - I'm not familiar with that either. 

 

Thanks again and please give my regards to , I'm glad things are looking

up for her.

 

Char

 

From: jtubman77 <jtubman@...>

Subject: rheumatic Re: for those considering taking low dose naltrexone

rheumatic

Date: Wednesday, October 14, 2009, 10:30 PM

 

Hi Char,

LDN has helped with the inflammation, as her bloodwork shows that both her

E.S.R.(Sed rate)and C.R.P.have been falling; however, her CK(CPK)has been rising

lately although she is now much more active and taking physio which can raise CK

levels (also she has weened off prednisone). At least two out of three aint bad.

Her rash however has not improved, but her muscle strength and mobility have

greatly improved. I would strongly recommend LDN ASAP as it does work faster

than Minocin. Both drugs compliment each other well.

As far as looking at the cause of DM, I suggest you also do some mycoplasma

(cell wall deficient bacteria) testing.

To gain perspective ,this is my wifes DM story....

We chose the LDN Minocin path because my wife

already taken 8 doses of chemo and 33 days of radiation to treat her breast

cancer in 2007, and her immune system was already severly depressed as result,

and all this did not stop the DM from progressing, only delayed it a few months.

She then went on 60 mg of Prednisone daily, and dropped gradually down to 10 mg

daily over about 8 weeks.It helped at first but every time she dropped the dose

she got weeker (note: she is now off Pred.completely) .

She got worse fast, and by mid Jan2008 she was hospitalized, and four hospitals

latter, she finally came home Nov 2/08. It was very rough, as her heart and

lungs were affected. They tried many IVIG's with really no success. She at the

point where she could not move her arms and legs, could barely swallow/eat.

After she refused all immunosuppressant drugs, which really frustrated the

hospital docs,then one of said OK we will try it your way, and started 50 mg

Minocin every 2nd night on April 7/08. She got worse for about 2-3 months, but

slowly improved, but titrated up to 200 mg every 2nd night. It was the miracle

that we prayed for, and very slowly her muscles got stronger, and she began to

swallow. Then no more heart/lung involvement( then Carol who you know from this

site, flew in from Manitoba, who is another DM patient who had recovered using

Minocin, visited my wife in the hospital last October here in about one

year ago, which really

inspired my wife ).

When she came home on Nov 2/08, she could barely walk, and could not do one

stair/step. in Feb2009 she started LDN, and has titrated up to 4 mg per night

(working up to the 4.5 mg per night max.)over several months. She remains on

both drugs, and probably will be on them for years. She can now walk for over

30-40 minutes, and can easily walk up/down all 28 stairs in our townhouse. She

can eat/drink/swallow anything. She started Physio/message in July2009, and most

of her pain results from exercise. She will continue physio for another 2 years.

Her rash remains a problem.

We were able to get the Minocin and LDN from her family doctor (not from the

specialists) because we were persistant and stubborn,and gave him written

info.to back our request. There is some research to suggest that both drugs not

only help with autoimmune diseases but also help with cancer.If you have DM, I

think you can safely assume that the pathegen (called a mycoplasma which is a

cell wall deficient bacteria)is there.

She is also taking 600 mg/day of Alpha Lipoic Acid, Allimax, Pro Biotics,

Quercitin, and more. She has no specific diet, but should be no sugar,no gluten,

no dairy, but just can't follow it. She intends to juice more.

These drugs have been a life saver. Our only regret was not starting them much

earlier. We are looking forward to the new drug, Lupuzor, being developed in

France which should be available by the end of next year (assuming the side

effects are tolerable). I have a hunch that it will not only cure Lupus, but

possibly DM as well.We will see.

Jim &

> > >

> > >

> > > From: soheila A <soadl80@ >

> > > Subject: Re: rheumatic for those considering taking low dose naltrexone

> > > rheumatic@grou ps.com

> > > Date: Wednesday, September 2, 2009, 2:05 PM

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > I have been on AP for two years and half. Found about low dose naltrexone

(LDN) benefits for autoimmune diseases through LDN group. I ask my doctor

(Rheumatologist) to prescribed it for me. He did. I have been taking LDN for

more than a year , it gives me lots of energy and lowered my ESR somehow.

> > > I saw my docrtor today. He told me that he prescribed LDN for some of his

patients and they are happy with the result. I guess it is worthy to give LDN a

try while you are on AP.

> > > soheila

> > >

> > >

> > >

> > >

[Guest guest]

Hi,

Is there any information regarding LDN purchase without having a prescription?

Thanks, kathy

________________________________

From: jtubman77 <jtubman@...>

rheumatic

Sent: Mon, October 19, 2009 2:28:50 PM

Subject: rheumatic Re: for those considering taking low dose naltrexone

Hi again Char

I am sorry you have to deal with this nasty disease. As far as I know LDN has no

side effects (other than stimulating thyroid, which is really a good thing, but

can complicate things if you are already taking thyroid medication-which forces

you to start at a lower dose of LDN, the work up slowly)Dreams are more

vivid(because you sleep deeper,and produce more endorphins) on LDN too. Do NOT

get the slow release form of LDN

Alpha Lipoic acid is great too, and you can buy ALA at a health food store, and

also for ALA (unlike LDN)the slow/sustained release is best.

-Jim and

> > > >

> > > >

> > > > From: soheila A <soadl80@ >

> > > > Subject: Re: rheumatic for those considering taking low dose

naltrexone

> > > > rheumatic@grou ps.com

> > > > Date: Wednesday, September 2, 2009, 2:05 PM

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > I have been on AP for two years and half. Found about low dose

naltrexone (LDN) benefits for autoimmune diseases through LDN group. I ask

my doctor (Rheumatologist) to prescribed it for me. He did. I have been taking

LDN for more than a year , it gives me lots of energy and lowered my ESR

somehow.

> > > > I saw my docrtor today. He told me that he prescribed LDN for some of

his patients and they are happy with the result. I guess it is worthy to give

LDN a try while you are on AP.

> > > > soheila

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hello all,  I saw my doctor last Thursday and asked him about LDN.  He said it

is NARCAN!  Is this true?  If so, NARCAN is used to reverse a narcotic

overdose.  How does that help the immune system?  Dolores

From: Kathy <egenbacher@...>

Subject: Re: rheumatic Re: for those considering taking low dose naltrexone

rheumatic

Date: Monday, October 19, 2009, 9:07 PM

 

Hi,

Is there any information regarding LDN purchase without having a prescription?

Thanks, kathy

____________ _________ _________ __

From: jtubman77 <jtubmanhotmail (DOT) com>

rheumatic@grou ps.com

Sent: Mon, October 19, 2009 2:28:50 PM

Subject: rheumatic Re: for those considering taking low dose naltrexone

Hi again Char

I am sorry you have to deal with this nasty disease. As far as I know LDN has no

side effects (other than stimulating thyroid, which is really a good thing, but

can complicate things if you are already taking thyroid medication-which forces

you to start at a lower dose of LDN, the work up slowly)Dreams are more

vivid(because you sleep deeper,and produce more endorphins) on LDN too. Do NOT

get the slow release form of LDN

Alpha Lipoic acid is great too, and you can buy ALA at a health food store, and

also for ALA (unlike LDN)the slow/sustained release is best.

-Jim and

> > > >

> > > >

> > > > From: soheila A <soadl80@ >

> > > > Subject: Re: rheumatic for those considering taking low dose

naltrexone

> > > > rheumatic@grou ps.com

> > > > Date: Wednesday, September 2, 2009, 2:05 PM

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > I have been on AP for two years and half. Found about low dose

naltrexone (LDN) benefits for autoimmune diseases through LDN group. I ask

my doctor (Rheumatologist) to prescribed it for me. He did. I have been taking

LDN for more than a year , it gives me lots of energy and lowered my ESR

somehow.

> > > > I saw my docrtor today. He told me that he prescribed LDN for some of

his patients and they are happy with the result. I guess it is worthy to give

LDN a try while you are on AP.

> > > > soheila

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Thank you for the information on LDN.  Let's see if I have this right.  The

objective is to keep a high level of endorphines.  The body manufactures

endorphines naturally in response to the feeling of being in love or  when one

eats chocolate, oysters or other aphrodisiacs!  Am I on the right path here? 

What happens when you stop the LDN?  Does one go into depression?  Years ago, I

heard of a program where people actually cured themselves by watching comedy

continuously.  Is this the same as endorphines being prooduced in the body due

to the increased laughter?  Is this now in pill form taken at low dosage used to

suppress immune response and or suppress cancer cells from

forming ?                        If I have this wrong, can anyone explain it

better or tell me the long term effect of taking low dose naltrexone.  At what

point. if any, does it quit working?  And what would be the results?  Would the

immune

system be left inoperable and would the cancer cells begin multiplying

rapidly?  How much research has been done on this ?  Dolores

From: jtubman77 <jtubman@...>

Subject: rheumatic Re: for those considering taking low dose naltrexone

rheumatic

Date: Tuesday, October 20, 2009, 4:22 PM

 

Dolores,

NARCAN is not LDN, as it is given in IV form and is equivalent to high dose

Naltrexone-brand names like Revia are used to treat drug and alcohal additions

but in very large doses IE 50-300 mg per day.

In sharp contrast, " LDN " is LOW DOSE NALTREXONE, and is usually given at a dose

(pill form which has to be compounded)of between 3mg - 4.5 mg per night. LDN

only blocks endorphin production for about 4-6 hours, and then the human body

overcompensates for the other 18-20 hours and produces many more endorphins than

it would ordinarily. More endorphins regulate the immune system, and decrease

disease. NARCAN/REVIA in such high doses produce a 24 hour blockade(of Opiate

receptors), and as a result does NOT increase endorphin production, and

depresses the immune system.

Dr Ian Zagon at Penn.State University found this with his cancer research, and

used Naltraxone in lows doses ,and also in the same experiment, one hundred

times the low lose(high dose)with predictable results. Low dose lead to

reduction in cancer cells, and in high doses the opposite occured.

How Naltrexone affects the immune system is entirely dose dependant.

-Jim

> > > > >

> > > > >

> > > > > From: soheila A <soadl80@ >

> > > > > Subject: Re: rheumatic for those considering taking low dose

naltrexone

> > > > > rheumatic@grou ps.com

> > > > > Date: Wednesday, September 2, 2009, 2:05 PM

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > I have been on AP for two years and half. Found about low dose

naltrexone (LDN) benefits for autoimmune diseases through LDN group. I ask

my doctor (Rheumatologist) to prescribed it for me. He did. I have been taking

LDN for more than a year , it gives me lots of energy and lowered my ESR

somehow.

> > > > > I saw my docrtor today. He told me that he prescribed LDN for some of

his patients and they are happy with the result. I guess it is worthy to give

LDN a try while you are on AP.

> > > > > soheila

> > > > >

> > > > >

> > > > >

> > > > >