Re:Had to stop my AP therapy--LDN expense

[Guest guest]

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

I take LDN and do it myself. I get 4 pills a month, use distilled water and I

have a 50 ml bottle I got from the pharmacist, I bought the bottle distilled

water  (99 cents), a syrenge that you use for baby meds to measure. I put one

pill in the bottle, let it disolve, shake it once real well put in refrigerator.

I take 4 mg. The syrenge fits right into the opening of the bottle and I just

put in the liquid on the top and pull up what I need. Don't go to the bottom,

that is the residue you don't want. I have a little left over after 12 days and

I pour that out and make a new batch. I keep it in the refrigerator and I

actually found it works faster this way, because the pill has to disolve in your

stomach were the liquid gets right to work. Medicare pays for the 4 pills a

month, so I am not sure how much you will pay for the pills

LDN has helped with the pain of my RA and DM, I get a good nights rest. On the

beginning you may have some insomnia and vivid dreams, but after that you can

sleep well. I was so badly bend over that I had to turn my head to look at

someone, now I am upright and can walk better. I had to get of the LDN in July

because I broke my hip and was on strong pain medication, but I started back a

week ago and I feel already the difference. I even started to drive my van again

(Hip surgery was 8 weeks ago). If you know you going to have a procedure done

with pain meds later stop the LDN a day or two before so the meds can help. When

I had my accident in July the LDN was not totaly out of my system and the pain

medication didn't help, it actually made the pain worse. There is so much good

with LDN, but you need to reed the info on the computer about the few things you

have to watch for. Look it up under Low dose Naltrexone

Eva

From: Celia <DustBunniesAndBooks@...>

Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

 

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

I haven't read all the posts in this thread, so forgive me if anyone has asked

if you have tried Embrel. It is an injectible frequently prescribed for RA. I

take it for AS. It can be effective in reducing inflammation and pain. It is

expensive, although Amgen has a co-pay card to help defray insurance expenses.

It is also possible to apply to get the Enbrel at no cost for those unable to

pay.

E

________________________________

From: Eva Holloway <holloway-eva@...>

rheumatic

Sent: Sun, September 5, 2010 6:49:52 AM

Subject: Re: rheumatic Re:Had to stop my AP therapy--LDN expense

 

I take LDN and do it myself. I get 4 pills a month, use distilled water and I

have a 50 ml bottle I got from the pharmacist, I bought the bottle distilled

water  (99 cents), a syrenge that you use for baby meds to measure. I put one

pill in the bottle, let it disolve, shake it once real well put in refrigerator.

I take 4 mg. The syrenge fits right into the opening of the bottle and I just

put in the liquid on the top and pull up what I need. Don't go to the bottom,

that is the residue you don't want. I have a little left over after 12 days and

I pour that out and make a new batch. I keep it in the refrigerator and I

actually found it works faster this way, because the pill has to disolve in your

stomach were the liquid gets right to work. Medicare pays for the 4 pills a

month, so I am not sure how much you will pay for the pills

LDN has helped with the pain of my RA and DM, I get a good nights rest. On the

beginning you may have some insomnia and vivid dreams, but after that you can

sleep well. I was so badly bend over that I had to turn my head to look at

someone, now I am upright and can walk better. I had to get of the LDN in July

because I broke my hip and was on strong pain medication, but I started back a

week ago and I feel already the difference. I even started to drive my van again

(Hip surgery was 8 weeks ago). If you know you going to have a procedure done

with pain meds later stop the LDN a day or two before so the meds can help. When

I had my accident in July the LDN was not totaly out of my system and the pain

medication didn't help, it actually made the pain worse. There is so much good

with LDN, but you need to reed the info on the computer about the few things you

have to watch for. Look it up under Low dose Naltrexone

Eva

From: Celia <DustBunniesAndBooks@...>

Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

 

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

E,

Enbrel nearly killed me, between that and Prednison and Cellcept I was so sick I

couldn't even stand much less do anything around the house, then the infections

got to me and that was so bad, and my rheumy didn't want me on antibiotics, it

was a bad situation. Once I started the antibiotics I found out how much better

I started to feel after several weeks, I checked into RA and DM with antibiotics

and I have not looked back. Yes, everyone is different, but after a year on

chemo, then Enbrel, Cellsept and all that time high doses of Prednison I am glad

I am of those drugs.

Eva

From: Celia <DustBunniesAndBooks@...>

Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

 

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

Hi Eva,

I take LDN and ibuprophen. Does LND effect the ibuprophen like pain meds? Both

my hips I found out are bad. I am researching " Anterior " hip replacement. Do

you know about this. Less invasive and pain, sooner back to normal life

(whatever that means) My RA keeps me inside anyway. I am slowly getting off

prednisone after 3 yeas. been on 5mg for year or so, now on 2mg. i feel awful,

and flared on over...new places too. could be the AP? or the lower prednisone?

any advise? i feel like all my joints are deteriorating because of RA. sally

rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

Sally,

the doctor that did my hip replacement told me if you have RA you should have to

have a total hip replacement done. I did it the hard way, had an accident,

smashed my hip, pushed the leg into the hip area which made it even worse

because I had to have a 5 lb weight on my leg for three days before surgery. I

was in the hospital 4 days after surgery and two weeks in rehab and then home

and did pt at home. I am driving my car, going shopping etc. I am retired. It

has been 8 weeks since my surgery.

You can take the LDN and iboprufen, it doesn't have codein or morphine or such

stuff in the pill., If you do have a procedure done where you get codein etc.

ask first before and then stop the LDN for two days before and about two or

three days after taking the codein meds go back on the LDN again

Eva

From: Celia <DustBunniesAndBooks@...>

Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

Did your Dr give you the scipt?   I asked my Dr., and he would not have anything

to do w/it.  Can I just go to a compounding pharm?

 Josie (Dallas TX)

________________________________

From: Celia <DustBunniesAndBooks@...>

rheumatic

Sent: Sun, September 5, 2010 7:31:31 AM

Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN.  It costs around $35 a month, depending on which

compounding pharmacy you use.  --Celia <><

------------------------------------

To unsubscribe, email: rheumatic-unsubscribe@...! Groups Links

[Guest guest]

Eva.

have you been active(physically) and on any drugs with RA? i haven't driven car

for over a year, have people do errands for me etc. how are the rest of your

joints? I'M sure i need the surgery.....but can't imagine going through all

that when I feel so bad with the RA. I've been on pill AP 2 months. do you

thing getting IV's done before surgery would help, or help other joints?

haven't been to rhemy for over two years. this site and help from everyone

keeps me from going over the edge. sally

rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

Thanks Celia and Eva for the LDN info. Celia, does it work well for you...are

you taking anything else?

Eva, I am so sorry about your fall...but glad that you are past the worst of

that. If you dont mind when I am ready (have found out whats up with my lungs,

have found a dr. to prescribe LDN to me, and determined whether I can go back to

Mino at some point) I would like you to tell me again your preparations for the

liquid solution you use...i.e. how many capsules? tablets? at what dose (4 mg)?

etc.

Best wishes for better health,

O

>

>

> From: Celia <DustBunniesAndBooks@...>

> Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

> rheumatic

> Date: Sunday, September 5, 2010, 7:31 AM

>

>

>  

>

>

>

> O asked......I know you take LDN. Is that difficult to have a dr.

> prescribe? Is it expensive (like Mino)?

>

> I recently started LDN. It costs around $35 a month, depending on which

> compounding pharmacy you use. --Celia <><

>

>

>

>

>

>

>

>

>

[Guest guest]

Enbrel is an injectable weekly and they do offer a Patient Assistance

Program that pays for all your medication. It is FREE. I am into my third

week. Call them at 1-888-436-2735 and ask your questions.. I was approved

immediately. With My Rhumi Doctors scrip my meds were sent UPS overnight

to me. I used to take Orincia (a drip) which works on different factors

that cause inflammation until my company insurance changed. I know these

are bandaids temporarily until I can get to a therapeutic dosage of LDN and

begin the AP Therapy. I must be able to function and work to keep my

insurance.

L

:

On Sun, Sep 5, 2010 at 11:31 AM, Sasser <evelynsasser@...>wrote:

>

>

> I haven't read all the posts in this thread, so forgive me if anyone has

> asked

> if you have tried Embrel. It is an injectible frequently prescribed for RA.

> I

> take it for AS. It can be effective in reducing inflammation and pain. It

> is

> expensive, although Amgen has a co-pay card to help defray insurance

> expenses.

> It is also possible to apply to get the Enbrel at no cost for those unable

> to

> pay.

>

> E

>

> ________________________________

> From: Eva Holloway <holloway-eva@...<holloway-eva%40sbcglobal.net>

> >

> rheumatic <rheumatic%40>

> Sent: Sun, September 5, 2010 6:49:52 AM

> Subject: Re: rheumatic Re:Had to stop my AP therapy--LDN expense

>

>

>

> I take LDN and do it myself. I get 4 pills a month, use distilled water and

> I

> have a 50 ml bottle I got from the pharmacist, I bought the bottle

> distilled

> water (99 cents), a syrenge that you use for baby meds to measure. I put

> one

> pill in the bottle, let it disolve, shake it once real well put in

> refrigerator.

> I take 4 mg. The syrenge fits right into the opening of the bottle and I

> just

> put in the liquid on the top and pull up what I need. Don't go to the

> bottom,

> that is the residue you don't want. I have a little left over after 12 days

> and

> I pour that out and make a new batch. I keep it in the refrigerator and I

> actually found it works faster this way, because the pill has to disolve in

> your

> stomach were the liquid gets right to work. Medicare pays for the 4 pills a

>

> month, so I am not sure how much you will pay for the pills

> LDN has helped with the pain of my RA and DM, I get a good nights rest. On

> the

> beginning you may have some insomnia and vivid dreams, but after that you

> can

> sleep well. I was so badly bend over that I had to turn my head to look at

> someone, now I am upright and can walk better. I had to get of the LDN in

> July

> because I broke my hip and was on strong pain medication, but I started

> back a

> week ago and I feel already the difference. I even started to drive my van

> again

> (Hip surgery was 8 weeks ago). If you know you going to have a procedure

> done

> with pain meds later stop the LDN a day or two before so the meds can help.

> When

> I had my accident in July the LDN was not totaly out of my system and the

> pain

> medication didn't help, it actually made the pain worse. There is so much

> good

> with LDN, but you need to reed the info on the computer about the few

> things you

> have to watch for. Look it up under Low dose Naltrexone

>

> Eva

>

>

> From: Celia <DustBunniesAndBooks@...<DustBunniesAndBooks%40.com>

> >

> Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

> rheumatic <rheumatic%40>

> Date: Sunday, September 5, 2010, 7:31 AM

>

>

>

> O asked......I know you take LDN. Is that difficult to have a dr.

> prescribe? Is it expensive (like Mino)?

>

> I recently started LDN. It costs around $35 a month, depending on which

> compounding pharmacy you use. --Celia <><

>

>

[Guest guest]

Directions for Liquid LDN

Get the doctor to write a prescription for eight 50 mg TABLETS. Don't

get more than 8 as this is going to last you a long time and you don't

want it to expire.

At the pharmacy ask them for a liquid measuring bottle and liquid

syringe. They should give this to you for free.

Fill the bottle with 50 ml of water. Drop one of the 50 mg tablets in it

and let it sit for several hours or til it's completely dissolved. At

this point you can either shake the bottle or not, there is a big debate

on whether you should or not; I do.

Take the syringe and suck out your dose. I find it easier to transfer a

little into a smaller cough medicine cup first. I take 4.5 mg.

Store the bottle in the refrigerator. When it gets low, transfer the

remainder into the cough medicine cop, and refill the bottle with 50 ml

water, drop another tablet in, pour the remaining stuff back in and wait

a few hours and you have a new batch.

This method costs me $35 a YEAR.

> >

> >

> > From: Celia DustBunniesAndBooks@

> > Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

> > rheumatic

> > Date: Sunday, September 5, 2010, 7:31 AM

> >

> >

> > Â

> >

> >

> >

> > O asked......I know you take LDN. Is that difficult to have a

dr.

> > prescribe? Is it expensive (like Mino)?

> >

> > I recently started LDN. It costs around $35 a month, depending on

which

> > compounding pharmacy you use. --Celia <><

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Sally,

even so I had a big problem with the Dermatomyositis and RA I have stayed very

active, I travel with my husband and even last year with our German choir for

two weeks, There were a few things I could not do, but I didn't miss one

performance on that trip. I have a little three-legged stool to sit on and I use

it when we sing for a longer period of time. A few times I had to use my

wheelchair. Now I use a 3-wheel-rollator to get around or my cane. I walked two

miles in the Wilderness area above Palm Springs this summer.I had to have a hip

replaced in July but I am back walking again even if it is just going up and

down the street to get me going again. I was almost bedridden before 2008. I

took two trips, but they were bad because I needed a lot of help because I was

so weak and I was moving around in a wheelchair.

I have to be able to walk well by next September because our German choir is

going to Germany and I am the tour guide for that trip.LOL We have been working

on this trip for awhile, planning which cities to visit and where to sing. I go

to choir rehearsals every week and I also knit in a Prayer Shawl group once a

week, go to church and do my shopping. I am back to driving my car and I can

visit with my friends again. I used to not be able to do much had to ask for

help too.Sometimes people look at me and say " you look so well " but I was

feeling like hell. This illness is so deceptive. Thank God the people in my

church understood after I explained what this illness does and they have never

stopped praying for me.

Once I started the antibiotic protocol I realized how much it helped me. I also

joined the Road Back Foundation. org. and there are lots of people that can help

too. There are lots of people here too in this forum and Dolores has so much

knowledge, there is Caol and Ethel and many more old timers, they have been

there and are still taking the antibiotics to stay ahead of the mess. Yes, I

have been on it for almost three years and I have made slow progress, I am still

so much better of than when I was on the chemo, Cellcept, Enbrel, and all that

time on high doses of Prednison. Sometimes when I was in lots of pain I would

get a super high injection which just made the bone issue worse. I have

osteopinea and wiping out on the concrete didn't help much. I have big knots up

and down my arms, Used to have those knots on my wrist, but they are almost

gone. Couldn't open a jar or even a bottle of water, now I am able to do it. I

still have Dermatomyositis on my

hands but I just recently added  Pepsid (prescription) to stop the

inflammation in my hands. Surprising what also works on other things beside acid

in your stomach. My hands were always red, swollen and peeling. I used to wear

gloves all the time. Now they look normal with almost no peeling. I know AP

takes a long time and I am very patient because I also know this illness didn't

start on just one day it acummalated  over a period of time. I was diagnosed in

1999 but didn't get really sick till 2005 when I had such a bad flare I ended up

in the hospital for 6 days, had open lung surgery for interstitial pulmonary

fibrosis (rheumatic lung) and finally I had to retire medically because I could

not do my job anymore. I was so sick and it got worse when they put me on chemo.

That didn't work, so they put me on Cellcept and Enbrel and all the while I was

taking Prednison. Wish now I would have known about AP in 2006 I would be a lot

further ahead with this

recovery and probably would not have osteopinea. Watch out for the Prednison,

you can get hooked on it, I made a decison after 2 years to get off it and

worked my way down monthly till I was only using it every third day and I asked

the doctor if I could get off it then and since I was only taking 1 mg every

third day she agreed. Never looked back.

The Low dose Naltrexone helps with the pain, I am almost pain free now since I

am back on LDN. Still have some small twinges, but it has only been 8 weeks

since I had surgery for my hip and physical Therapy.

Sorry this got so long,

From: Celia <DustBunniesAndBooks@...>

Subject: rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><

[Guest guest]

Eva, I have been off antibiotics for years.

The goal of this therapy is to bring a person to remission and off

medication. In order for this to happen, any other medical problem a person

may have needs to be addressed at the same time they are being treated for

rheumatic disease. (That would include emotional baggage - often a major

factor.) We are all different which is why the therapy must be tailored to

us individually, but the body is designed to heal itself - given the proper

help. That may mean using protocols and strategies unavailable in

conventional medicine and requiring more action on the part of the patient.

Many of you know I've had rheumatoid arthritis and polymyositis put in

remission with antibiotics, and then two bouts of lymphomatoid papulosis

(1994 and 1999) put in remission with alternative therapies when the medical

profession had no answer. I am not on any medication. At my age, there is

not much left of this old immune system so maintaining a healthy lifestyle

and periodic detoxing of my body is extremely important to keep myself as

healthy as possible. The longer this civilization exists, the more

resistant these organisms become - making it that much more difficult to

defeat them.

And while I'm thinking of it, the same organisms that cause these rheumatic

diseases can also cause other diseases which is what happened to me, but

that's a subject for another time.

Ethel

rheumatic Re:Had to stop my AP therapy--LDN expense

rheumatic

Date: Sunday, September 5, 2010, 7:31 AM

O asked......I know you take LDN. Is that difficult to have a dr.

prescribe? Is it expensive (like Mino)?

I recently started LDN. It costs around $35 a month, depending on which

compounding pharmacy you use. --Celia <><