Low dose naltrexone

[Guest guest]

I have posted on here before. It works!! I work and am self supportive. I

started at 3.. then had to go up to 4.5. I do not know anyone it hasn't

worked for. I had zero t cells and cd8's. they are normal with it. I take

other meds, also. If you want other info you can e mail me . Good luck!!

Happy New Year! Carol in LI, NY

[Guest guest]

I have been the world's greatest advocate for Low Dose Naltrexone, and it

sure worked for me for a couple of years. Then it stopped working, and I

don't know why. Just the same I think it is worth trying - impressive in

some ways. My story re Naltrexone is at

http://members.austarmetro.com.au/~julian/cfs/naltrexone.htm

Bob do you have any reference re the FDA approval for immune modulation,

and have you found any evidence for it being effective apart from what is

on the LDN site?

Carol do you have any other info on LDN? If so and it is not suitable to

post here, can you email it to me? Thanks.

Cheers and happy new year to all,

n

At 08:49 30/12/02, you wrote:

>I have posted on here before. It works!! I work and am self supportive. I

>started at 3.. then had to go up to 4.5. I do not know anyone it hasn't

>worked for. I had zero t cells and cd8's. they are normal with it. I take

>other meds, also. If you want other info you can e mail me . Good luck!!

>Happy New Year! Carol in LI, NY

[Guest guest]

It doesn't have risks... My main symptoms.?? You're asking me to write a

book...!! I've had CFS/FM since 1989. I was totally disabled. Had every

symptom..YOu name it!! All of them.. w/o exception. It developed into an

immune defficiency. W/o an immune modulator, I do not produce lymphocytes. I

literally would have zero lymphocytes, and would be dead right now. I already

had melanoma once. It takes some time for the naltraxone to work, and the 3

mg stopped working after a year. I take 4.5. I think it took 3 months for my

lymphocytes to return. I actually had my appointment with Dr Bihari

yesterday. He is the best. Although he is disappointed that I am dependent on

meds. He says that he won't give up until I am totally cured.. taking no

meds. But nothing new and significant has been on the horizon...I take other

meds also, so if you want to know them, ket me know.. I still cannot compute

anything with numbers.. that sems to be a permanant problem. Still get the

migraines some times.. but not all the time , as I used to. Have A Happy New

Year!! Stick with the naltraxone.. give it a chance. Bihari is always happy

to help people, and he has the brightest MD I have ever known. You can call

him if you want for a consult. Wishing you aand everyone a great New Year and

GOOD HEALTH TO ALL!!!! Carol in LI< NY.

[Guest guest]

I also found LDN subject very interesting. I made a search at web on LDN and

CFS but could not find much info. If anyone has more knowledge on

this,please post.

Thanks.

Nil

Re: low dose naltrexone

| I have been the world's greatest advocate for Low Dose Naltrexone, and it

| sure worked for me for a couple of years. Then it stopped working, and I

| don't know why. Just the same I think it is worth trying - impressive in

| some ways. My story re Naltrexone is at

| http://members.austarmetro.com.au/~julian/cfs/naltrexone.htm

|

| Bob do you have any reference re the FDA approval for immune modulation,

| and have you found any evidence for it being effective apart from what is

| on the LDN site?

|

| Carol do you have any other info on LDN? If so and it is not suitable to

| post here, can you email it to me? Thanks.

|

| Cheers and happy new year to all,

|

| n

|

| At 08:49 30/12/02, you wrote:

| >I have posted on here before. It works!! I work and am self supportive.

I

| >started at 3.. then had to go up to 4.5. I do not know anyone it hasn't

| >worked for. I had zero t cells and cd8's. they are normal with it. I take

| >other meds, also. If you want other info you can e mail me . Good luck!!

| >Happy New Year! Carol in LI, NY

|

|

| This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

|

|

[Guest guest]

I cannot get to sleep if I take it right before bed. That's my only side

effect. It's weird - on one hand, I feel it relaxes me, but then I can't get

to sleep. Any suggestions???

>From: n <jrobinso@...>

>Reply-

>

>Subject: Re: low dose naltrexone

>Date: Wed, 01 Jan 2003 15:43:23 +1100

>

>I have been the world's greatest advocate for Low Dose Naltrexone, and it

>sure worked for me for a couple of years. Then it stopped working, and I

>don't know why. Just the same I think it is worth trying - impressive in

>some ways. My story re Naltrexone is at

>http://members.austarmetro.com.au/~julian/cfs/naltrexone.htm

>

>Bob do you have any reference re the FDA approval for immune modulation,

>and have you found any evidence for it being effective apart from what is

>on the LDN site?

>

>Carol do you have any other info on LDN? If so and it is not suitable to

>post here, can you email it to me? Thanks.

>

>Cheers and happy new year to all,

>

>n

>

>At 08:49 30/12/02, you wrote:

> >I have posted on here before. It works!! I work and am self supportive.

>I

> >started at 3.. then had to go up to 4.5. I do not know anyone it hasn't

> >worked for. I had zero t cells and cd8's. they are normal with it. I take

> >other meds, also. If you want other info you can e mail me . Good luck!!

> >Happy New Year! Carol in LI, NY

>

_________________________________________________________________

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[Guest guest]

See my Posts

[Guest guest]

Sorry - I found it helped me sleep better! Related I think to that kind of

relaxation effect you describe. It is important to take at just before bed

so that it does its work, so I think it is bad luck for you. Unless things

change as you habituate, it might get better?

n

At 12:53 02/01/03, you wrote:

>I cannot get to sleep if I take it right before bed. That's my only side

>effect. It's weird - on one hand, I feel it relaxes me, but then I can't get

>to sleep. Any suggestions???

> >I have been the world's greatest advocate for Low Dose Naltrexone, and it

> >sure worked for me for a couple of years. Then it stopped working, and I

> >don't know why. Just the same I think it is worth trying - impressive in

> >some ways. My story re Naltrexone is at

> >http://members.austarmetro.com.au/~julian/cfs/naltrexone.htm

> >

[Guest guest]

It is related to methadone. You can read up on it on the web

[Guest guest]

Hi:

What kind of med is Naltraxone? I've not heard of it.

Teena

Re: low dose naltrexone

It doesn't have risks... My main symptoms.?? You're asking me to write a

book...!! I've had CFS/FM since 1989. I was totally disabled. Had every

symptom..YOu name it!! All of them.. w/o exception. It developed into an

immune defficiency. W/o an immune modulator, I do not produce lymphocytes. I

literally would have zero lymphocytes, and would be dead right now. I already

had melanoma once. It takes some time for the naltraxone to work, and the 3

mg stopped working after a year. I take 4.5. I think it took 3 months for my

lymphocytes to return. I actually had my appointment with Dr Bihari

yesterday. He is the best. Although he is disappointed that I am dependent on

meds. He says that he won't give up until I am totally cured.. taking no

meds. But nothing new and significant has been on the horizon...I take other

meds also, so if you want to know them, ket me know.. I still cannot compute

anything with numbers.. that sems to be a permanant problem. Still get the

migraines some times.. but not all the time , as I used to. Have A Happy New

Year!! Stick with the naltraxone.. give it a chance. Bihari is always happy

to help people, and he has the brightest MD I have ever known. You can call

him if you want for a consult. Wishing you aand everyone a great New Year and

GOOD HEALTH TO ALL!!!! Carol in LI< NY.

[Guest guest]

It doesn't " ramp you up " . It actually takes some time for it to work, but it

does. A friend of mine took it for a few years before I did, and he told me

that everyone improves on it, but I didn't believe it, or try it. It wasn't

till I lost another medication and had no lymphocytes, that I decided to try it.

Sorry I didn't try it sooner. The dosage is 4.5 mg at bedtime. DR Bihari is my

MD, and my friend's and a lot of his friend's. DR Bihari really knows his

stuff, and helps a lot of people.

[Guest guest]

Hi, ,

I had this in my files. Originally from a Co-Core post. Hope it helps.

Adrienne

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

I read about another immune enhancing treatment in Dr.

Teitelbaum's newsletter (From Fatigued to Fantastic Newsletter,

Nov. 2001, 800/333-5287). The treatment is low dose

naltrexone, a treatment developed by the Harvard-educated Dr.

Bihari, based on a lot of research on the interaction between

endorphins and the immune system. He has found low dose

naltrexone helps in CFS, FM, some autoimmune illnesses, some

cancers, Parkinson's Disease and AIDS, especially if started

early. One takes a very low dose that acts for only a few hours in

the evening. By blocking the opiate receptors briefly, it

encourages one's own opiate production (which occurs in

the early morning). There are essentially no side effects and

since the amount is so small, it would not be likely to cause

allergies. It also is thought to help the immune system by

balancing the TH2:TH1 ratio and boosting NK function, which

are typically abnormal in CFS. You or your doctor can see

the web site at www.low dose naltrexone.org for more

information. Compounding pharmacies prepare the special low

doses (usually 3 to 4.5 mg, e.g, Key Pharmacy--800 878-1322;

or Cape Apothecary--410-757-3522). Some people have

a little more trouble sleeping the first few nights, and if this

problem persists, the dose is lowered by 1 mg.

Low Dose Naltrexone

Hi, Everybody,

I'd like some feedback regarding LDN. My doctor (who does not

really understand CFS) wants me to start LDN at one drop at night

and slowly work up to the 3mg. I read a lot about this and don't

really understand whether it is an immune enhancer or modulator. I

can't afford to be ramped up - I'll just crash. My autonomic

nervous system needs quieting.

It seems that I read about LDN in Dr. Cheney's work but I can't

find it now. I also tried the archives here.

So... Does anyone know what Dr. Cheney says about LDN?

Does it balance the immune system (balance the TH1 and TH2)?

What is your experience with this (if any)?

Thank you for whatever you can tell me.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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

[Guest guest]

, Here is the other one I saved.

Adrienne

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

Subj:Re: Re: Naltrexone

Date:4/4/03 1:44:49 PM Mountain Standard Time

From:Cattttttt@...

Reply-to:

Sent from the Internet

You can call him and have a phone conference. You do not have to see him.

You can also ask his secretary or his wife to mail or fax you copies of his

studies. They are also probably on line somewhere. I had zero lymphocytes

before the naltraxone. Now they are normal and have been so since I was on it

for 3 months. That speaks for itself. Dr B is an old man. A brilliant old

man. He has been on the naltraxone for years, himself. No side effects. So

has his wife, w/o side effects. For me, it is the only med w/o side effects.

Don't know how old you are, but do you remember how in the past , under Mayor

Ed Koch, the methadone maintenance program was started for drug addicts? It

caught a klot of criticism. Well, the was Dr Bihari, the " rebel " . He uses it

for AIDS, cancer, and CFIDS. It is " great " in that it gives you back your

lymphocytes. It starts a cascade of neuroendocrine events that increase T

cells and CD8's. Hope this helps you. Carol

[Guest guest]

If you google in their " groups " you will find a brief discussion of it.

Adrienne

Low Dose Naltrexone

Hi, Everybody,

I'd like some feedback regarding LDN. My doctor (who does not

really understand CFS) wants me to start LDN at one drop at night

and slowly work up to the 3mg. I read a lot about this and don't

really understand whether it is an immune enhancer or modulator. I

can't afford to be ramped up - I'll just crash. My autonomic

nervous system needs quieting.

It seems that I read about LDN in Dr. Cheney's work but I can't

find it now. I also tried the archives here.

So... Does anyone know what Dr. Cheney says about LDN?

Does it balance the immune system (balance the TH1 and TH2)?

What is your experience with this (if any)?

Thank you for whatever you can tell me.

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

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

[Guest guest]

Adrienne,

Thank you very much. Bless you for being so organized. I was

mostly concerned about the Th1-Th2 shift and didn't want to over

stimulate.

I have been googling but sometimes I don't pull up the right stuff

or the info doesn't get through the brain fog. I read mostly about

MS people being on it. Are many on this group taking LDN?

Thanks again.

> If you google in their " groups " you will find a brief discussion

of it.

> Adrienne

>

>

> Low Dose Naltrexone

>

>

> Hi, Everybody,

> I'd like some feedback regarding LDN. My doctor (who does not

> really understand CFS) wants me to start LDN at one drop at

night

> and slowly work up to the 3mg. I read a lot about this and don't

> really understand whether it is an immune enhancer or modulator.

I

> can't afford to be ramped up - I'll just crash. My autonomic

> nervous system needs quieting.

> It seems that I read about LDN in Dr. Cheney's work but I

can't

> find it now. I also tried the archives here.

> So... Does anyone know what Dr. Cheney says about LDN?

> Does it balance the immune system (balance the TH1 and

TH2)?

> What is your experience with this (if any)?

>

> Thank you for whatever you can tell me.

>

>

>

>

>

> This list is intended for patients to share personal experiences

with each other, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

>

>

>

> -------------------------------------------------------------------

-----------

>

[Guest guest]

I have been using LDN now for 8 months. I consider it responsible for

dramatically improving my CD4/8 ratio, which had been progressively

worsening for 2 years.

All the information on LDN is available at the LowDoseNaltrexone

Support Group although it is mainly for MS people.

I simply grind down ReVia 50 mg tablets to powder, split the powder

into 11 equal sections, and place the powder into empty capsules.

This gives me a dose of between 4.5 and 4.8 mg. It also makes it the

cheapest of my medications.

Let me just add that I was disappointed in only receiving one reply

to my question on Chlorella. I take it that no one here has much

faith in it being usefull for CFS/FM.

[Guest guest]

Thank you for the information. I've never had my Cd levels tested.

I am taking LDN in olive oil made up by the compounding pharmacy.

I appreciate all the responses I got. It really does help to have

the input from others. I'm planning on having the good responses to

the LDN you all seem to have had and I feel more confident in taking

it.

> I have been using LDN now for 8 months. I consider it responsible

for

> dramatically improving my CD4/8 ratio, which had been

progressively

> worsening for 2 years.

>

> All the information on LDN is available at the LowDoseNaltrexone

> Support Group although it is mainly for MS people.

>

> I simply grind down ReVia 50 mg tablets to powder, split the

powder

> into 11 equal sections, and place the powder into empty capsules.

> This gives me a dose of between 4.5 and 4.8 mg. It also makes it

the

> cheapest of my medications.

>

> Let me just add that I was disappointed in only receiving one

reply

> to my question on Chlorella. I take it that no one here has much

> faith in it being usefull for CFS/FM.

[Guest guest]

hi i am on low dose naltrexone and use 5.0 mg day .... its too much work to

grind down and divide out capsules but find apothecure in texas has great

prices ( rx = 28 dollars a month ) and i use a naltrexone exlair daily ....

will

retest my low actitivty but normal number of nk cells in the future.. soimish

[Guest guest]

It took 3 months for magnesium to work. Several things take time to work for

different reasons. Yes, I DID feel better after 3 months on 4.5. not 3.0. But

it is only part of an overall protocol of prescription and non prescription

drugs. All I can tell you is that I had zero lymphocytes w/o it, which means I

could have died from any infection. # months after naltraxone, my lymphocytes

were normal again, and I rarely, if ever get sick with anything any more.

[Guest guest]

Dear ,

Sounds good! Anything is worth trying. Let us know how you do.

Low Dose Naltrexone

Dear Family of Samter's,

I will soon start low dose Naltrexone. My mom called the doctor in New York,

Dr. Bihari. They talked for 1 hour, and it cost $500.00! But if it is the cure

for Samters or at least helps, it's worth it.

Happy Easter!!

K. (Michigan)

*Snotty two shoes* (Hopefully not long)

***Dear Lori and ine,

Please continue to (Debate) post I enjoy hearing from everyone (Both of You)

-Even a good debate is interesting. It is always good to look at things from

different points of view.

We are a family, and families fight, but still help each other.

The Mother of *Snotty Two Shoes* (Non-samterite)

P.S. I didn't learn a lot from Dr. Bihari, we mostly discussed 's

health history.

<< File: ATT00000.html >>

[Guest guest]

squeakieschubert@a... wrote:

> I will soon start low dose Naltrexone.

,

I am excited for you and will be waiting to hear how you do on

it. ))

From the literature I read, sounds like it can start working pretty

fast. Since I reacted very badly to Accolate and Singulair and

landed up in the hospital from trying them, I am hoping that this

might be something that will help us all. I have an appointment with

my doctor in Albuquerque on the 27th and will definitely be talking

to him about Naltrexone. I wonder if it will work differently for

those who have been desensitized and those who haven't but my guess

is that it will work the same for both, if it is going to, regardless

of desense but just my .02 worth.

Take Care,

New Mexico

[Guest guest]

,

I forgot to ask what dosage is he starting you on?

New Mexico

[Guest guest]

and 's mom,

Can insurance cover any of the cost, even out of network or

something? At least see if you can itemize that on your taxes.

Wow! I guess $500 maybe isn't even that expensive for a consultation

for an hour but sheesh.

How are you doing the naltrexone? Where are you doing it? Dr.

Bihari is here in New York where I am I guess. But I don't think

he's on my insurance

well, good luck with it, I hope it works.

Lori

[Guest guest]

Lori ... Many insurances do cover the cost .. some 50%, some 80%, and

some 100% ... call the Dr Bihari's office at 212 9294196 and run your

insurance details by them. and 's Mom .. I am

excited and wish you the best .. I so hope the theory works in

practice as well as it seems to on paper.

All the Best

> and 's mom,

>

> Can insurance cover any of the cost, even out of network or

> something? At least see if you can itemize that on your taxes.

> Wow! I guess $500 maybe isn't even that expensive for a

consultation

> for an hour but sheesh.

>

> How are you doing the naltrexone? Where are you doing it? Dr.

> Bihari is here in New York where I am I guess. But I don't think

> he's on my insurance

>

> well, good luck with it, I hope it works.

>

> Lori

[Guest guest]

Hi ,

Dr. Bihari is not on my policy, he's out of network, and my

deductible is $4,000, so I can't afford consult with him

unfortunately. But thanks for the information!

Lori

> > and 's mom,

> >

> > Can insurance cover any of the cost, even out of network or

> > something? At least see if you can itemize that on your taxes.

> > Wow! I guess $500 maybe isn't even that expensive for a

> consultation

> > for an hour but sheesh.

> >

> > How are you doing the naltrexone? Where are you doing it? Dr.

> > Bihari is here in New York where I am I guess. But I don't think

> > he's on my insurance

> >

> > well, good luck with it, I hope it works.

> >

> > Lori

[Guest guest]

I take about 4mg, for immune function and to reduce a kind of

uncomfortable " anxious gut " feeling, and improves my sleep patterns. I

took it for years, stopped for years, and have just restarted. The gut and

sleep improved immediately, and I have not been infected-type-sick (flu,

chest etc) since re-starting.

It MUST be taken late at night before sleeping, because it works on the

diurnal cycles.

I divide a 50mg tab into 12 pieces to get the 4mg or so needed.

My slightly out of date info is on my website here...

http://www.users.on.net/julian.robinson/cfs/naltrexone.htm

n

-------Original Message from karen ravitz at 03:25 PM 5/05/04 Wednesday-------

>Hi All,

>I went to see Dr. Burton in town today. He suggested LDN. I know

>it has been mentioned here in the past, is anyone still using it? Also, I

>never got a response on midodrine...has anyone used that for low blood volume?

>

>Thanks for you help,

>

>