Low dose naltrexone

[Guest guest]

Dear Marcus,

I have been on Low Dose Naltrexone for almost 2 months now. I have not found any improvement while taking this. I was on Prednisone for a week before the LDN and was feeling great. I could even smell a little. Being able to breathe clearly lasted for about a month. This was one of the last options she wanted to take. First was surgery, then aspirin desensitization, then diet, and finally LDN. I started another Prednisone dose, this time for a month instead of a week, a nasal rinse of .9% sodium chloride irrigation mixed with Bactroban 2% ointment, and the antibiotic Biaxin. Together all three really help me a lot. But between my last Prednisone dose and this new one I felt miserable. I think LDN does not work. But my mom says give it a while to work. In a few months I will report how I am doing again on the LDN treatment.

K., 16 (Michigan)

[Guest guest]

Ah gee....I was really hoping that it might be something that would

help us but then maybe it will take a bit longer. I agree with your

mom, give it a little longer.

I hope that you are feeling better soon. I know this is such a

depressing illness and it is difficult to keep our heads above water

but like my doctor told me over 30 years ago (I was your age), that

sooner or later they will find things that will help, maybe even a

cure.

Hang in there and will be watching for your post a few months from

now on your progress.

Take Care and thanks for posting.

in NM

> Dear Marcus,

> I have been on Low Dose Naltrexone for almost 2 months now. I have

not found

> any improvement while taking this. I was on Prednisone for a week

before the

> LDN and was feeling great. I could even smell a little. Being able

to breathe

> clearly lasted for about a month. This was one of the last options

she wanted

> to take. First was surgery, then aspirin desensitization, then

diet, and

> finally LDN. I started another Prednisone dose, this time for a

month instead of a

> week, a nasal rinse of .9% sodium chloride irrigation mixed with

Bactroban 2%

> ointment, and the antibiotic Biaxin. Together all three really help

me a lot.

> But between my last Prednisone dose and this new one I felt

miserable. I think

> LDN does not work. But my mom says give it a while to work. In a

few months I

> will report how I am doing again on the LDN treatment.

> K., 16 (Michigan)

[Guest guest]

In a message dated 6/1/2004 9:37:42 PM Eastern Standard Time, mboylebradley@... writes:

Do you have nasal polyps and have they grown back since LDN? What dose LDN are you on and where are you getting it made up?

Before I went on LDN I was on a Prednisone medrol pack (6 days). So when I started the LDN I was feeling good from the Prednisone. And in little over a month my ears plugged back up, my nose became congested, and I started feeling miserable again. I am going to be leaving for Spain in one month. I had to get my ears unblocked so now I am doing a longer course of Prednisone, along with the antibiotic Biaxin and a bactroban nasal rinse. This is on top of my regular medicine which is Advair 250, Zyrtec D, Ibuprofen, Astelin, Nasacort, & Singulair. Most I do twice a day. This last time I went to my ENT for a check up I knew that my polyps were already back. The time before when I saw her I had taken the medrol pack maybe about 2 to 3 weeks before and the polyps were gone when she checked. I didn't want her to stick her nasal scope (almost 2 feet of a medal tube) up my nose to look and poke at my polyps. So this last visit I can only assume they were back because I was miserable. I didn't let her check. It hurts. Plus this is expensive, 400.00! Just for the dr. to look up my nose for 3-4 min. No point to it. I am on 4.5 mg of LDN per day at night. I am getting it made up at a lab in New York called PARK-IRMAT DRUG CORP. that was recommended by Dr. Bahari. I hope you are right, maybe I'll be worse before I get better.....all I know is I'm so tired of all this medicine and there is no end in sight and I'm only 16 and sometimes this seems overwhelming. Last night I just cried......of course my period is coming. That's when I really get teary.......Thank you all for being there I love the support of this group even though I don't write often my mom and I always read the posts.....Always looking for new ideas....We've got Dr. Feingold information coming in the mail as we speak....we'll try that next...Probably along with NAET.....I have tried that before maybe 3 or 4 times didn't notice much...but will try it again. Again thank-you all for being there.....it means so much to know there are people like you working to solve this problem....If we all put our noses together (heads) we should be able to solve this problem. & Mom

[Guest guest]

: I hate to sound like a broken record but have you had asa desens? I fought this thing got 10 years before I finally did that and it helped so so much. I had to laugh about the nasal endoscope. I have to go to Stanford about every six weeks or so- sometimes more. They use the nasal endoscope - the rigid one and then they do debridment in the chair- no spray, no nothing. They put it up in the view box so I can see what they see- My daughter calls it the torture stick. I think I have grown immune,If they didn't do that then I would have to go to surgery every time for debridement. Hang in ther. I know how it feels to be chronically sick from sinuses. Make sure you are irrigating ( remember the polyps have no cilia ( little hair cells that sweep mucous and infection) They are like having a bunch of grapes in your nose and nothing moves so if you get thick mucous then that is just a haven for bacteria and hence sinusitis..There was a study not too long ago that

said people suffer more and have a worse quality of life from sinus disease than from bad heart disease- so don;t underestimate this disease process. Carolsqueakieschubert@... wrote:

In a message dated 6/1/2004 9:37:42 PM Eastern Standard Time, mboylebradley@... writes:

Do you have nasal polyps and have they grown back since LDN? What dose LDN are you on and where are you getting it made up?

Before I went on LDN I was on a Prednisone medrol pack (6 days). So when I started the LDN I was feeling good from the Prednisone. And in little over a month my ears plugged back up, my nose became congested, and I started feeling miserable again. I am going to be leaving for Spain in one month. I had to get my ears unblocked so now I am doing a longer course of Prednisone, along with the antibiotic Biaxin and a bactroban nasal rinse. This is on top of my regular medicine which is Advair 250, Zyrtec D, Ibuprofen, Astelin, Nasacort, & Singulair. Most I do twice a day. This last time I went to my ENT for a check up I knew that my polyps were already back. The time before when I saw her I had taken the medrol pack maybe about 2 to 3 weeks before and the polyps were gone when she checked. I didn't want her to stick her nasal scope (almost 2 feet of a medal tube) up my nose to look and poke at my polyps. So this last visit I can only assume they

were back because I was miserable. I didn't let her check. It hurts. Plus this is expensive, 400.00! Just for the dr. to look up my nose for 3-4 min. No point to it. I am on 4.5 mg of LDN per day at night. I am getting it made up at a lab in New York called PARK-IRMAT DRUG CORP. that was recommended by Dr. Bahari. I hope you are right, maybe I'll be worse before I get better.....all I know is I'm so tired of all this medicine and there is no end in sight and I'm only 16 and sometimes this seems overwhelming. Last night I just cried......of course my period is coming. That's when I really get teary.......Thank you all for being there I love the support of this group even though I don't write often my mom and I always read the posts.....Always looking for new ideas....We've got Dr. Feingold information coming in the mail as we speak....we'll try that next...Probably along with

NAET.....I have tried that before maybe 3 or 4 tim! es didn' t notice much...but will try it again. Again thank-you all for being there.....it means so much to know there are people like you working to solve this problem....If we all put our noses together (heads) we should be able to solve this problem. & Mom

[Guest guest]

,

You say you think the polyps are back but your not sure-

could it be just an infection?

If they are back 4 sure consider prednisodone for a short while but

I think chronic infection might be the problem because you think

they grew so quickly-

Also I am on the feingold diet and would recommend it -I

eat very high salycilates only by mistake and rarely high

salycilates.I think it has helped,but I am also restricting

makeup and creams because they contain hidden salycilates

and I am not sure but face creams/lipstick one applies straight onto

the face on top of sinuses,they penetrate into the skin and remain

for a while.Can I recommend the e- book by Sharla Race on

Salycilates ?I think it is about $14 She is the one on the Feingold

diet list of foods

but reading her story and advice helped me lots.She had fybromialgia

and chronic sinusitis but kind of cured herself .

To be very honest I am not sure about NAET because it should just

neutralise aspirin and nsaid sensitivity the major culprit-it might

get confusing for you .I know it has helped some people on this

site so hope i am not offending.

Good luck and let us know-

> In a message dated 6/1/2004 9:37:42 PM Eastern Standard Time,

> mboylebradley@v... writes:

> Do you have nasal polyps and have they grown

> back since LDN? What dose LDN are you on and where are you getting

it

> made up?

> Before I went on LDN I was on a Prednisone medrol pack (6 days). So

when I

> started the LDN I was feeling good from the Prednisone. And in

little over a

> month my ears plugged back up, my nose became congested, and I

started feeling

> miserable again. I am going to be leaving for Spain in one month. I

had to get

> my ears unblocked so now I am doing a longer course of Prednisone,

along with

> the antibiotic Biaxin and a bactroban nasal rinse. This is on top

of my regular

> medicine which is Advair 250, Zyrtec D, Ibuprofen, Astelin,

Nasacort, &

> Singulair. Most I do twice a day. This last time I went to my ENT

for a check up I

> knew that my polyps were already back. The time before when I saw

her I had

> taken the medrol pack maybe about 2 to 3 weeks before and the

polyps were gone

> when she checked. I didn't want her to stick her nasal scope

(almost 2 feet of

> a medal tube) up my nose to look and poke at my polyps. So this

last visit I

> can only assume they were back because I was miserable. I didn't

let her

> check. It hurts. Plus this is expensive, 400.00! Just for the dr.

to look up my

> nose for 3-4 min. No point to it. I am on 4.5 mg of LDN per day at

night. I am

> getting it made up at a lab in New York called PARK-IRMAT DRUG

CORP. that was

> recommended by Dr. Bahari. I hope you are right, maybe I'll

be worse

> before I get better.....all I know is I'm so tired of all this

medicine and there

> is no end in sight and I'm only 16 and sometimes this seems

overwhelming.

> Last night I just cried......of course my period is coming. That's

when I

> really get teary.......Thank you all for being there I love the

support of this

> group even though I don't write often my mom and I always read the

> posts.....Always looking for new ideas....We've got Dr. Feingold

information coming in the

> mail as we speak....we'll try that next...Probably along with

NAET.....I have

> tried that before maybe 3 or 4 times didn't notice much...but will

try it

> again. Again thank-you all for being there.....it means so much to

know there are

> people like you working to solve this problem....If we all put our

noses

> together (heads) we should be able to solve this problem.

& Mom

[Guest guest]

Hi , Thanks for responding and I am sorry that you are

having a rough time of it. It really sucks. What bothers me about

your situation is the Prednisone. Prednisone suppresses the immune

system. LDN boosts it. They work in opposite ways. Many with MS when

they start LDN have a re occurrence of old symptoms and the knee jerk

is to take a blast of steroids. With LDN steroids must only be used

as an absolute last resort and that is not easy because they make

people feel so good. People with MS on LDN still have bad days but

the promise is that they won't reach a point worse than their worst

day pre LDN. So far that is true for my husband who has primary

progressive MS and many others I know. Also true for my uncle with

Parkinsons. Now, on LDN, MS and Parkinsons can still stink, it is not

a cure but it is the best thing out there. It stops progression, has

no side effects and it is cheap. MS is a condition whereby the immune

system attacks the myelin sheath of nerve endings. This causes

scarring of the brain and spinal cord visible on an MRI. LDN

typically removes the last 3 months of damage but the old scars

remain. In times of stress these scars flare up and all old symptoms

return but it seems that the progression does stop, no new scars

form. With samters, lets assume that the immune systems attacks

itself and creates nasal polyps. You have surgery and the polyps are

removed. To my knowledge there is no permanent scarring so you start

with a clean slate. The LDN theory is that all people with an

autoimmune disorder have low levels of endorphins. Endorphins are

produced between 9PM and 2AM. By taking 4.5mg LDN nightly, between

these times, endorphin production is tripled and the immune system

cannot attack itself anymore. It would be typical to have an initial

re occurrence of old symptoms but from the papers I have read polyps

should not be able to grow if the LDN is working correctly. Sometimes

the LDN does not work 100%:

1. With MS, if the person is running an underlying infection (a

simple cold, a low fever, a bladder infection), old symptoms surface

and it is recommended they take 500mg DL Phenylalanine (an amino acid

found in chocolate and other foods) in the morning and afternoon. It

is suggested that this slows down the breakdown of endorphins during

the day and so in a way boosts the effect of LDN.

2. If the person is taking any medication that suppresses the immune

system

3. If the LDN is not compounded right (not an issue here as Irmats is

a reputable compounder of LDN)

4. If the person cannot tolerate 4.5mg

LDN can be a tricky business at times but it does hold tremendous

hope.

I am curious about one more thing , did you have trouble

sleeping when you first started LDN? Were you restless, did you have

vivid dreams? That is a common side effect that I like to hear as it

seems to mean that the LDN is working.

I am not in the medical field. I am a very grateful stay home Mom who

has overdosed on LDN information after seeing it work on my husband

with MS and my uncle with parkinsons.

All the Best

> In a message dated 6/1/2004 9:37:42 PM Eastern Standard Time,

> mboylebradley@v... writes:

> Do you have nasal polyps and have they grown

> back since LDN? What dose LDN are you on and where are you getting

it

> made up?

> Before I went on LDN I was on a Prednisone medrol pack (6 days). So

when I

> started the LDN I was feeling good from the Prednisone. And in

little over a

> month my ears plugged back up, my nose became congested, and I

started feeling

> miserable again. I am going to be leaving for Spain in one month. I

had to get

> my ears unblocked so now I am doing a longer course of Prednisone,

along with

> the antibiotic Biaxin and a bactroban nasal rinse. This is on top

of my regular

> medicine which is Advair 250, Zyrtec D, Ibuprofen, Astelin,

Nasacort, &

> Singulair. Most I do twice a day. This last time I went to my ENT

for a check up I

> knew that my polyps were already back. The time before when I saw

her I had

> taken the medrol pack maybe about 2 to 3 weeks before and the

polyps were gone

> when she checked. I didn't want her to stick her nasal scope

(almost 2 feet of

> a medal tube) up my nose to look and poke at my polyps. So this

last visit I

> can only assume they were back because I was miserable. I didn't

let her

> check. It hurts. Plus this is expensive, 400.00! Just for the dr.

to look up my

> nose for 3-4 min. No point to it. I am on 4.5 mg of LDN per day at

night. I am

> getting it made up at a lab in New York called PARK-IRMAT DRUG

CORP. that was

> recommended by Dr. Bahari. I hope you are right, maybe I'll

be worse

> before I get better.....all I know is I'm so tired of all this

medicine and there

> is no end in sight and I'm only 16 and sometimes this seems

overwhelming.

> Last night I just cried......of course my period is coming. That's

when I

> really get teary.......Thank you all for being there I love the

support of this

> group even though I don't write often my mom and I always read the

> posts.....Always looking for new ideas....We've got Dr. Feingold

information coming in the

> mail as we speak....we'll try that next...Probably along with

NAET.....I have

> tried that before maybe 3 or 4 times didn't notice much...but will

try it

> again. Again thank-you all for being there.....it means so much to

know there are

> people like you working to solve this problem....If we all put our

noses

> together (heads) we should be able to solve this problem.

& Mom

[Guest guest]

Hi ,

I'm not the you were responding to but I do have a couple

of questions and comments.

You said: " What bothers me about your situation is the Prednisone.

Prednisone suppresses the immune system. LDN boosts it. They work in

opposite ways. "

And

" With LDN steroids must only be used as an absolute last resort and

that is not easy because they make people feel so good. "

Many of us with Samters are on and have been on daily amounts of

prednisone for years. How can this work if pred. and LDN are

cancelling each other out? And due to the years of prednisone, we

cannot just stop them. I myself am very steroid dependent and have

tried many things to get me off it but haven't been able to do that

for the 30 some odd years I have had this disease. So, I guess what I

am saying is that for those of us who are on prednisone and cannot

get off it, we are up the creek without a paddle as far as LDN goes.

Would this be a correct assumption from what you know about it?

Thanks, I have really enjoyed the information that you have put on

here.

in NM

[Guest guest]

Hi , LDN and prednisone do work in opposite ways so it is a

concern. LDN can be safely taken with any class of drug bar narcotics

so that is not an issue, but the fact that they work in opposite ways

is. Generally with MS, people take periodic blasts of steroids and

once they start the LDN find that they generally don't need them.

Many with MS are faced with a difficult decision to give up the drugs

that have been suppressing their immune system for years and take LDN

instead. It is a very difficult choice. By what you say, yours is not

a choice as you are dependent on steroids. I have not thought about

the implications for people who take prednisone daily. That is a very

interesting point. I am not in a position to answer but the next time

I speak with Dr Bihari I will run your question by him and let you

know his response.

All the Best

> Hi ,

>

> I'm not the you were responding to but I do have a couple

> of questions and comments.

>

> You said: " What bothers me about your situation is the Prednisone.

> Prednisone suppresses the immune system. LDN boosts it. They work

in

> opposite ways. "

>

> And

>

> " With LDN steroids must only be used as an absolute last resort and

> that is not easy because they make people feel so good. "

>

> Many of us with Samters are on and have been on daily amounts of

> prednisone for years. How can this work if pred. and LDN are

> cancelling each other out? And due to the years of prednisone, we

> cannot just stop them. I myself am very steroid dependent and have

> tried many things to get me off it but haven't been able to do that

> for the 30 some odd years I have had this disease. So, I guess what

I

> am saying is that for those of us who are on prednisone and cannot

> get off it, we are up the creek without a paddle as far as LDN

goes.

> Would this be a correct assumption from what you know about it?

>

> Thanks, I have really enjoyed the information that you have put on

> here.

>

> in NM

[Guest guest]

Thanks ,

It will be interesting to see what Dr. Bihari has to say about this.

I was really hoping that Steph was going to have better results. I

know what it is like to become so ill at such a young age. Not that

it is any easier when you're older but it is in a different way. When

you're younger your classmates don't understand what is happening and

belonging is so very important. The with this illness even doctors

don't know much and with that you cannot explain it to your peers,

and so on...I remember the heartache of my schoolmates slowly

distancing themselves from me as they didn't understand and back when

I first became ill, there was the added concept that asthma was an

emotional problem and those with it just needed to pull themselves up

by their bootstraps and get over it. *sigh* Thank God, things have

changed some since then but I still run into the occassional person

who still thinks like this.

Take care and am looking forward to hearing what Dr. Bihari has to

say.

-NM

" mboylebradley " <mboylebradley@v...> wrote:

> I have not thought about

> the implications for people who take prednisone daily. That is a

very

> interesting point. I am not in a position to answer but the next

time

> I speak with Dr Bihari I will run your question by him and let you

> know his response.

> All the Best

>

[Guest guest]

Hi

Thanks for the answer. I am sorry it is not working out for you. Hopeully the treatment will work ith time.

Marcus

[Guest guest]

Hi .. I spoke with Dr Bihari today and he said that it

would not be a problem starting LDN while on prednisone daily. He

thinks that after 3 weeks your system would settle and it would then

be easier to wean off the steroids. The mechanics of prednisone

working in a completely opposite way to LDN is not that straight

forward. I must be clear here as I would hate to raise any false

hopes. Although it looks so clear to me on paper this would work ..

it has not been tried, tested or proven on samters .. or anything.

The only way to approach it wisely would be to chance it on the basis

that it cannot do any harm and it is cheap. I firmly believe LDN

works but I am in general far too optimistic for my own good and lack

any medical training whatsoever. Many of us are working towards a

clinical trial of LDN and MS and when that happens it should shed a

great deal more light on the mechanics of it's use.

All the Best

>

> > I have not thought about

> > the implications for people who take prednisone daily. That is a

> very

> > interesting point. I am not in a position to answer but the next

> time

> > I speak with Dr Bihari I will run your question by him and let

you

> > know his response.

> > All the Best

> >

[Guest guest]

Thanks !! ))

My allergist wasn't that interested in letting me try it but said

that if I go to Nat. Jewish, I should mention it to them since they

are a research hospital.

Other than that, if I decide to give it a shot, I would need to make

the phone consultation with Dr. Bihari.

in NM

" mboylebradley " <mboylebradley@v...> wrote:

> Hi .. I spoke with Dr Bihari today and he said that it

> would not be a problem starting LDN while on prednisone daily.

[Guest guest]

hi low dose naltrexone seems to help but i needed to raise my dose from 3mg

to 5 mg but basing this on subjective feeliings as md hasnt done repeat

natural killer cell funciton tests tea

> [Original Message]

> From: <alisonemechat@...>

> < >

> Date: 4/15/2005 10:34:08 AM

> Subject: Low dose naltrexone

>

>

> Hi,

>

> Has anybody tried low dose naltrexone? Anyone have any views on it?

>

> Best wishes,

> Alison

>

> From _www.low dose naltrexone.org_ (http://www.low dose naltrexone.org)

>

> What is low-dose naltrexone and why is it important?

> > Low-dose naltrexone holds great promise for the millions of people

> worldwide facing a possible death sentence from virtually incurable

cancers and oth

> er diseases.

> > In the developing world, LDN could provide the first low-cost, easy to

> administer, and side-effect-free therapy for HIV/AIDS.

> Naltrexone itself was approved by the FDA in 1984 in a 50mg dose for the

> purpose of helping heroin or opium addicts, by blocking the effect of

such

> drugs. By blocking opioid receptors, naltrexone also blocks the

reception of the

> opioid hormones that our brain and adrenal glands produce:

beta-endorphin and

> metenkephalin. Many body tissues have receptors for these endorphins and

> enkephalins, including virtually every cell of the body's immune system.

>

> In 1985, Bernard Bihari, MD, a physician with a clinical practice in New

> York City, discovered the effects of a much smaller dose of naltrexone

> (approximately 3mg once a day) on the body's immune system. He found that

this low

> dose, taken at bedtime, was able to enhance a patient's response to

infection by

> HIV, the virus that causes AIDS. [Note: Subsequently, the optimal adult

> dosage of LDN has been found to be 4.5mg.]

>

> In the mid-1990’s, Dr. Bihari found that patients in his practice with

> cancer (such as lymphoma or pancreatic cancer) could benefit, in some

cases

> dramatically, from LDN. In addition, people who had autoimmune disease

(such as

> lupus) often showed prompt control of disease activity while taking LDN.

>

>

>

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

--

> --

>

> How does LDN work?

> > LDN boosts the immune system, activating the body’s own natural

defenses.

> Up to the present time, the question of " What controls the immune

system? "

> has not been present in the curricula of medical colleges and the issue

has

> not formed a part of the received wisdom of practicing physicians.

Nonetheless,

> a body of research over the past two decades has pointed repeatedly to

one's

> own endorphin secretions (our internal opioids) as playing the central

role

> in the beneficial orchestration of the immune system, and recognition of

the

> facts is growing.

>

> Witness these statements from a recent review article of medical progress

in

> the November 13, 2003 issue of the prestigious New England Journal of

> Medicine: " Opioid-Induced Immune Modulation: .... Preclinical evidence

indicates

> overwhelmingly that opioids alter the development, differentiation, and

function

> of immune cells, and that both innate and adaptive systems are

affected.1,2

> Bone marrow progenitor cells, macrophages, natural killer cells,

immature

> thymocytes and T cells, and B cells are all involved. The relatively

recent

> identification of opioid-related receptors on immune cells makes it even

more

> likely that opioids have direct effects on the immune system.3 "

>

> The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is

> caused by taking LDN at bedtime each night is believed to produce a

prolonged

> up-regulation of vital elements of the immune system by causing an

increase in

> endorphin and enkephalin production. Normal volunteers who have taken LDN

in

> this fashion have been found to have much higher levels of

beta-endorphins

> circulating in their blood in the following days. Animal research by I.

Zagon,

> Ph.D., and his colleagues has shown a marked increase in metenkephalin

levels

> as well. [Note: Additional information for Dr. Zagon can be found at the

end

> of this page.]

>

> Bihari says that his patients with HIV/AIDS who regularly took LDN before

> the availability of HAART were generally spared any deterioration of

their

> important helper T cells (CD4+).

>

> In human cancer, research by Zagon over many years has demonstrated

> inhibition of a number of different human tumors in laboratory studies by

using

> endorphins and low dose naltrexone. It is suggested that the increased

endorphin

> and enkephalin levels, induced by LDN, work directly on the tumors'

opioid

> receptors — and, perhaps, induce cancer cell death (apoptosis). In

addition, it

> is believed that they act to increase natural killer cells and other

healthy

> immune defenses against cancer.

>

> In general, in people with diseases that are partially or largely

triggered

> by a deficiency of endorphins (including cancer and autoimmune diseases),

or

> are accelerated by a deficiency of endorphins (such as HIV/AIDS),

restoration

> of the body's normal production of endorphins is the major therapeutic

action

> of LDN.

>

>

>

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

--

> --

>

> What diseases has it been useful for and how effective is it?

> > Bernard Bihari, MD has described beneficial effects of LDN on a

variety of

> diseases:

> Cancers: Other Diseases:

> Breast Cancer

> Carcinoid

> Colon & Rectal Cancer

> Glioblastoma

> Liver Cancer

> Lung Cancer (Non-Small Cell)

> Lymphocytic Leukemia

> Lymphoma (Hodgkin's and

> Non-Hodgkin's)

> Malignant Melanoma

> Multiple Myeloma

> Neuroblastoma

> Ovarian Cancer

> Pancreatic Cancer

> Prostate Cancer (untreated)

> Renal Cell Carcinoma

> Throat Cancer

> Uterine Cancer

> ALS (Lou Gehrig's Disease)

> Alzheimer's Disease

> Behcet's Disease

> Celiac Disease

> Chronic Fatigue Syndrome

> Crohn's Disease

> Emphysema (COPD)

> Fibromyalgia

> HIV/AIDS

> Irritable Bowel Syndrome (IBS)

> Multiple Sclerosis (MS)

> Parkinson's Disease

> Pemphigoid

> Primary Lateral Sclerosis (PLS)

> Psoriasis

> Rheumatoid Arthritis

> Sarcoidosis

> Systemic Lupus (SLE)

> Ulcerative Colitis

> Wegener's Granulomatosis

>

>

> > LDN has demonstrated efficacy in hundreds of cases.

> Cancer. As of mid-2004, Dr. Bihari reports having treated over 300

patients

> with cancer that had failed to respond to standard treatments. Of that

group,

> some 50%, after four to six months treatment with LDN, began to

demonstrate

> a halt in cancer growth and, of those, over one-third have shown

objective

> signs of tumor shrinkage.

>

> Autoimmune disease. Within the group of patients who presented with an

> autoimmune disease (see above list), none have failed to respond to LDN;

all have

> experienced a halt in progression of their illness. In many patients

there

> was a marked remission in signs and symptoms of the disease. The greatest

number

> of patients within the autoimmune group are people with multiple

sclerosis,

> of whom there are now some 400 in Dr. Bihari's practice. Less than 1% of

> these patients has ever experienced a fresh attack of MS while they

maintained

> their regular LDN nightly therapy.

>

> HIV/AIDS. As of September 2003, Dr. Bihari has been treating 350 AIDS

> patients using LDN in conjunction with accepted AIDS therapies. Over the

past 7

> years over 85% of these patients showed no detectable levels of the HIV

virus a

> much higher success rate than most current AIDS treatments, and with no

> significant side effects. It is also worth noting that many HIV/AIDS

patients

> under Dr. Bihari's care have been living symptom-free for years taking

only LDN

> with no other medications.

>

> > How is it possible that one medication can impact such a wide range of

> disorders?

> The disorders listed above all share a particular feature: in all of

them,

> the immune system plays a central role and low blood levels of

endorphins are

> generally present, playing a role in the disease-associated immune

> deficiencies.

>

> Research by others on neuropeptide receptors expressed by various human

> tumors has found opioid receptors in many types of cancer:

>

> Brain tumors (both astrocytoma and glioblastoma)

> Breast cancer

> Endometrial cancer

> Head and neck squamous cell carcinoma

> Myeloid leukemia

> Lung cancer (both small cell and non-small cell)

> Neuroblastoma and others...

> These findings suggest the possibility for a beneficial LDN effect in a

wide

> variety of common cancers.

>

>

>

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

--

> --

>

> How can I obtain LDN and what will it cost?

> > LDN can be prescribed by your doctor, and prepared by your local

pharmacy.

> Naltrexone is a prescription drug, so your physician would have to give

you

> a prescription after deciding that LDN appears appropriate for you.

>

> Naltrexone in the large 50mg size, originally manufactured by DuPont

under

> the brand name ReVia, is now sold by Mallinckrodt as Depade and by Barr

> Laboratories under the generic name naltrexone.

>

> LDN is now being made available by hundreds of local pharmacies, as well

as

> by some mail-order pharmacies, around the US. Some pharmacists have been

> grinding up the 50mg tablets of naltrexone to prepare the 4.5mg capsules

of LDN;

> others use naltrexone, purchased as a powder, from a primary manufacturer.

>

> One of the first pharmacies to do so was Irmat Pharmacy in Manhattan.

Their

> recent price for a one-month's supply of 4.5mg LDN (30 capsules) was $38.

> Irmat will ship it anywhere, in the US or to other countries, and will

accept

> prescriptions from any licensed physician.

>

> > Pharmacies that are good sources of LDN:

> Irmat Pharmacy, New York, NY (212) 685-0500

> Gideon's Drugs, New York, NY (212) 575-6868

> The Compounder Pharmacy, Aurora, IL (800) 679-4667

> The Medicine Shoppe, Canandaigua, NY (800) 396-9970

> Skip's Pharmacy, Boca Raton, FL (800) 553-7429

> 's Pharmacy, Toronto, Canada (800) 361-6624

>

>

>

> > IMPORTANT: Make sure to specify that you do NOT want LDN in a

slow-release

> form.

> Reports have been received from patients that their pharmacies have been

> supplying a slow-release form of naltrexone. Pharmacies should be

instructed NOT

> to provide LDN in an " SR " or slow-release or timed-release form. Unless

the

> low dose of naltrexone is in an unaltered form, which permits it to

reach a

> prompt " spike " in the blood stream, its therapeutic effects may be

inhibited.

>

> > IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that

has a

> reputation for consistent reliability in the quality of the LDN it

delivers.

> The FDA has found a significant error rate in compounded prescriptions

> produced at randomly selected pharmacies. Dr. Bihari has reported seeing

adverse

> effects from this problem. Please see our report, Reliability Problem

With

> Compounding Pharmacies. Please see the above list of recommended

pharmacies for

> some suggested sources.

>

>

>

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

--

> --

>

> What dosage and frequency should my physician prescribe?

> The usual adult dosage is 4.5mg taken once daily at night. Because of

the

> rhythms of the body's production of master hormones, LDN is best taken

between

> 9pm and 3am. Most patients take it at bedtime.

>

> People who have multiple sclerosis that has led to muscle spasms are

advised

> to use only 3mg daily and to maintain that dosage.

>

> Rarely, the naltrexone may need to be purchased as a solution in

distilled

> water with 1mg per ml dispensed with a 5ml medicine dropper. If LDN is

used in

> a liquid form, it is important to keep it refrigerated.

>

> The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every night.

> Dosages below this range are likely to have no effect at all, and dosages

above

> this range are likely to block endorphins for too long a period of time

and

> interfere with its effectiveness.

>

> > IMPORTANT: Make sure to specify that you do NOT want LDN in a

slow-release

> form (see above).

>

>

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

--

> --

>

> Are there any side effects or cautionary warnings?

> > Side effects:

> LDN has virtually no side effects. Occasionally, during the first week's

use

> of LDN, patients may complain of some difficulty sleeping. This rarely

> persists after the first week. Should it do so, dosage can be reduced

from 4.5mg

> to 3mg nightly.

>

> > Cautionary warnings:

> Because LDN blocks opioid receptors throughout the body for three or

four

> hours, people using medicine that is an opioid agonist, i.e. narcotic

> medication such as Ultram, morphine, Percocet, Duragesic patch or

codeine-containing

> medication should not take LDN until such medicine is completely out of

one's

> system. In addition, LDN should probably not be taken during pregnancy.

>

> Full-dose naltrexone (50mg) carries a cautionary warning against its use

in

> those with liver disease. This warning was placed because of adverse

liver

> effects that were found in experiments involving 300mg daily. The 50mg

dose does

> not apparently produce impairment of liver function nor, of course, do

the

> much smaller 3mg and 4.5mg doses.

>

> People who have received organ transplants and who therefore are taking

> immunosuppressive medication on a permanent basis are cautioned against

the use

> of LDN because it may act to counter the effect of those medications.

>

>

>

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

--

> --

>

> When will the low-dose use of naltrexone become FDA approved?

> > Although naltrexone itself is an FDA-approved drug, LDN still awaits

> clinical trials.

> The FDA approved naltrexone at the 50mg dosage in 1984. LDN (in the 3mg

or

> 4.5mg dosage) has not yet been submitted for approval because the

prospective

> clinical trials that are required for FDA approval need to be funded at

the

> cost of many millions of dollars.

>

> All physicians understand that appropriate off-label use of an already

> FDA-approved medication such as naltrexone is perfectly ethical and

legal. Because

> naltrexone itself has already passed animal toxicity studies, one could

> expect that once testing is able to begin, LDN could complete its

clinical trials

> in humans and receive FDA approval for one or more uses within two to

four

> years.

>

>

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

--

> --

>

> What You Can Do

> > Talk to your doctor.

> If you are suffering from HIV/AIDS, cancer, or an autoimmune disease,

LDN

> could help. In AIDS and cancer therapy, LDN is often used in conjunction

with

> other medications.

>

> Cancer. Anyone with cancer or a pre-cancerous condition should consider

LDN.

> Many use LDN as a preventive treatment. Post-treatment, others have been

> using LDN to prevent a recurrence of their cancer. LDN has been shown in

many

> cases to work with virtually incurable cancers such as neuroblastoma,

multiple

> myeloma, and pancreatic cancer.

>

> HIV/AIDS. As an AIDS drug, LDN leads to far fewer side effects than the

> standard “AIDS cocktailâ€. When used in conjunction with HAART

therapies, LDN can

> boost T-cell populations, prevent disfiguring lipodystrophy, and lower

rates

> of treatment failure.

>

> Do not be afraid to approach your doctors — physicians today are

> increasingly open to learning about new therapies in development. Tell

your doctors

> about this website, or print out and hand them the information, and let

them

> weigh the evidence.

>

> > Tell others.

> If someone you know has HIV/AIDS, cancer, or an autoimmune disease, LDN

> could save them from a great deal of suffering. If they use e-mail, send

them the

> address of this website (_www.low dose naltrexone.org_

> (http://www.low dose naltrexone.org) ). Or, print out the site and mail

them the information.

>

> > Help spread the word to the media, the medical community, and to

> developing countries.

> Low-dose naltrexone has the potential to reduce the terrible human loss

now

> taking place throughout the globe. It is a drug that could prevent

millions

> of children from becoming AIDS orphans. It is a drug that could be a

powerful

> ally in the war against cancer.

>

> If you or someone you know has connections in the media, the medical

> community, or to those in developing countries involved in AIDS policy or

treatment,

> please let them know about LDN.

>

> > Raise funds to help run clinical trials.

> If possible, consider contributing to the Foundation for Immunologic

> Research (FFIR), a 501©(3) non-profit organization, founded by Bernard

Bihari, MD,

> in order to help assist the implementation of clinical trials for LDN.

The

> goal is to achieve general scientific acceptance of LDN. This, in turn,

should

> lead to international availability for people everywhere. See the

> Foundation's website.

>

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

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

>

> About This Website

> > This is a not-for-profit website.

> This website is sponsored by Advocates For Therapeutic Immunology. The

> purpose of this website is to provide information to patients and

physicians about

> important therapeutic breakthroughs in advanced medical immunology. The

> authors of this site do not profit from the sale of low-dose naltrexone

or from

> website traffic, and are in no way associated with any pharmaceutical

> manufacturer or pharmacy.

>

> > Consult your doctor.

> This website is not intended as a substitute for professional medical

help

> or advice. A physician should always be consulted for any medical

condition.

>

> > Contact us.

> For information on how to contact us with questions or comments, click

here.

>

> Please note that no response can be given to individual questions

concerning

> medical symptoms or treatment.

>

>

>

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

--

> --

>

> Additional Information

> Bernard Bihari, MD, 29 W. 15th Street, New York, NY 10011; (212)

929-4196.

> Click here to see Dr. Bihari's curriculum vitae.

> Ian S. Zagon, Ph.D., Professor of Neuroscience and Anatomy, Pennsylvania

> State University, Department of Neuroscience and Anatomy, H-109, The M.S.

> Hershey Medical Center, Hershey, PA 17033; office phone: (717) 531-8650;

email:

> _isz1@..._ (mailto:isz1@...) (click here and here for Dr.

Zagon's

> websites).

>

>

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

--

> --

>

> Footnotes

> Roy S, Loh HH. Effects of opioids on the immune system. Neurochem Res

> 1996;21:1375-1386

> Risdahl JM, Khanna KV, PK, Molitor TW. Opiates and infection. J

> Neuroimmunol 1998;83:4-18

> Makman MH. Morphine receptors in immunocytes and neurons. Adv

Neuroimmunol

> 1994;4:69-82

>

>

>

>

[Guest guest]

JAQUELYN McCANDLESS, M.D.

Certified by American Board of Psychiatry & Neurology

21800 lee St., #48, Woodland Hills, CA 91367

Telephone (818) 716-0565 Fax (818) 337-7338

www.starvingbrains.com JMcCandless@...

LOW-DOSE NALTREXONE: INFORMAL CLINICAL STUDY REPORT, 7-1-05

What is naltrexone? Naltrexone is an FDA-approved drug called Revia

used as an

opiate antagonist, and has been used to treat opiate drug addiction.

At full

dose, usually 50-150mg a day, it blocks the response to opiate drugs

such as

heroin or morphine. I as well as many other DAN! doctors have tried

Naltrexone

as an opioid blocker hoping to offset the opioid effects of the large

peptides

in wheat and milk that are thought to affect our kids adversely.

However, I

never found it to be useful for that purpose, and I haven't heard of

many others

who have. Some studies were actually done on autistic children by

researchers

to try to study this, but results were not encouraging. I

occasionally hear of

it being used for SIB, but I do not know its effectiveness in that

regard.

However, it has been shown that opioids can operate as cytokines,

operating

through opioid receptors on immune cells and producing

immunomodulatory effects.

The quality of an individual's immune system can be evaluated through

the

balance of cytokines (e.g. interleukins and interferons) it is

producing.

Cytokines are the principal communication signalers of the immune

system. A

popular classification method is referred to as the Th1/Th2 balance;

Th1 cells

promote cell-mediated immunity while Th2 cells induce humoral

immunity. While

cellular immunity (Th1) directs Natural Killer T-cells and

macrophages to attack

abnormal cells and microorganisms at sites of infection inside the

cells,

humoral immunity (Th2) results in the production of antibodies used to

neutralize foreign invaders and substances outside of the cells. The

inability

to respond adequately with a Th1 response can result in chronic

infection and

cancer; an overactive Th2 response can contribute to allergies,

various

syndromes and play a role in autoimmune disease, which probably all

of our ASD

children have to some extent.

A Manhattan, New York physician, Dr. Bernard Bihari, studying the

immune

responses in a group of AIDs patients, discovered that a very low

dose of

naltrexone in less than one-tenth the usual dosage boosts the immune

system and

helps fight any disease that is characterized by inadequate immune

function. As

an effective up-regulator of the immune system, he termed this new

therapy

Low-Dose Naltrexone (LDN) and has described remarkable responses in

those with

AIDs, cancer, and autoimmune diseases such as Multiple Sclerosis

(MS). LDN

tends to normalize the immune system by elevating the body's

endorphin levels

but also accomplishes its results with virtually no side effects or

toxicity. I

first got the idea of trying this on ASD children from hearing of its

benefits

in halting the usual progression in MS disease, reading of many first-

hand

reports of no recurrence for up to 5 and 6 years in some of these

people using a

nightly tiny dose of Naltrexone. In reviewing the literature, the

lowest dose

Naltrexone that had been used in autistic children was 12.5mg, and the

researchers were looking for its use as an opioid antagonist, not an

immune

system stimulant. Since the endorphins are an integral part of the

immune

system, when a tiny dose of naltrexone (3mg for children, 4.5mg for

adults) is

given between 9-12pm at night (11pm is ideal) there is an attempt for

the body

to overcome the opioid block and the endorphins rise, to stay elevated

throughout the next 18 hours.

I have just completed an 8-week informal clinical study on 15 of my

ASD patients

using low-dose naltrexone, or LDN. Several adults participated also,

one with

Crohn's Disease, one with Chronic Fatigue Syndrome, and Jack and

myself as

controls, not having any immune disorder that we know about. The dose

Dr. Bihari

found most efficacious was between 3-4.5mg, so the children were

given 3mg and

the adults or children over 100 lbs 4.5mg. This medication is

terribly bitter

(causing subjects from previous studies to drop out), and needs to be

given once

daily only between 9-12pm (ideally 11pm, which is usually about the

time

parents go to bed). I worked with Dr. Tyrus at Coastal

Compounding; he at

first created capsules in these two strengths, but then we decided on

a

transdermal cream which parents could put onto their kids just before

parents go

to bed – hopefully the kids are long asleep. That way we could adjust

the dose

easily (some of the tinier kids did better with only 1-1/2mg), the

bitter taste

was no problem, and it could be put on their bodies while they slept.

It has

worked wonderfully and was brilliantly executed by Tyrus, with whom I

have

worked closely on many compounds for ASD kids over the years. A

month's supply

is $30, a two-month supply is $55.

I asked parents to report weekly on: Sleep, Appetite, Stools,

Relating, General

Activity, Cognition, and Language. 8 of the 15 children have had

positive

responses, and five of these 8 have been nothing short of phenomenal

according

to their parents. The primary positive responses have been in the

area of mood,

cognition, language, and relating. 5 of the children had equivocal

results,

some good responses interspersed with complications with gut

infections and

treatments, so it was difficult to know just what was doing what. One

child

dropped out because of no response after 4 weeks (my Chelsey, of

course, a

notorious non-responder), one child dropped out because of vacations

and trips,

and another stopped because of personal family issues.

No allergic reactions were noted to the cream. The primary side

effect was that

in the first few days of taking this medicine, the child might have

some

insomnia and wake up earlier. Even then, most woke up in better mood.

Quite a

few of the kids had early hyperactive/hyperawake effects, and this

was temporary

(3-5 days) except for two of the tiny kids, who finally got much

better when

their dose was decreased. One of these ended up doing very well with

only a

tiny bit (almost immeasurable) each night, yet it had a definite

effect. I

would say the most consistent positive report has been happiness and

good mood

in the kids. I now recommend everyone start with ¼ cc, or 1.5mg for a

few

nights before going on to the ½ cc, which is 3mg. The adults will

stay on

4.5mg, though 3 may be plenty for some of them.

The two adults in the study, one with Crohn's and the other with

Chronic Fatigue

Syndrome, have had very positive responses, and the Crohn's

participant says she

has not had any problems with her gut since taking this. Dr. Bihari

has

announced a study with 15 Crohn's with all 15 having a very positive

and

sustained excellent reaction to the therapy. Other than feeling a

little more

erotic (this has been reported in some of the MS patients), Jack and

I have not

noticed any side effects from the use at 4.5mg nightly. We feel

pretty good on

it; the mood elevation is pretty universal with everyone who takes

it, and

increased socialization had even been noted in some earlier studies

which used

much bigger doses. No one else has done a study of ASD kids with

these tiny

doses, and no one to my knowledge has used the transdermal

application at night

for the endorphin rush (pulse) that takes place about 2-4 am. All

participants

who completed the study have indicated they wish to continue.

This very small and very preliminary study has been positive enough

to warrant a

more formal study, and I am trying to get Dr. Vojdani at

Immunosciences

interested in participating with some immune testing to verify the

supposed T2

to T1 shift that I believe is happening for at least some of the

children.

However, the doses are tiny, the application is easy, it is non-toxic

at these

doses, and it is relatively inexpensive, so I suspect we will get

lots of

informal clinical data from those who will be starting to use it now

long before

we get a formal study conducted. This is by no means a magic bullet,

but I am

adding it to my armamentarium to try to get the children as immune-

efficient as

possible. I would appreciate parents reporting on the lists I

monitor; for

questions, please do not post or phone me personally, but I will try

to address

questions on the CSB e-list if other parents or your doctors cannot.

There is a

website www.low dose naltrexone.com that will provide more information

to those

desiring such.

To those of you who participated in the study; please feel free to

share on the

lists any of your feelings, impressions, and results, good, bad, or

indifferent

– the more we know the better for everyone. I THANK ALL OF YOU SO

MUCH for

being trusting enough to go along with me in trying something new,

and I thank

Dr. Tyrus for helping devise a successful form to use in our

children.

BTW, he has as usual offered to share his formula with any other

compounding

pharmacy who wishes to call him, 912-354-5188. Those of you in my

study may

want to transfer your prescription to your local compounder to save

shipping

charges.

Jaquelyn McCandless, M.D.

7-2-05

[Guest guest]

I'm about to start LDN, 3 mg. Does anyone else take it? If so, do you take

it at night? Anything specific to look for, benefit or side-effect-wise?

Thanks,

Jim

[Guest guest]

Jim

was active on a LDN group. I do not have it's full name. You

might want to check that out, too.

In a message dated 12/21/2005 9:01:48 PM Eastern Standard Time,

jschm111@... writes:

I'm about to start LDN, 3 mg. Does anyone else take it? If so, do you

take

it at night? Anything specific to look for, benefit or side-effect-wise?

Thanks,

Jim

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

It took 3 months for it to work for me. I now take 4.5 mg. After a couple of

years 3 mg was not enough. I had zero lymphocytes beofre taking it. They came

back to normal within 3 months. That's a good indication that it is working.

[Guest guest]

Jim, My wife takes LDN 4.5 mg nightly, primarily for ir's positive effect on

natural killer cell activity, and without any negative effect in several years

of use. Mel

[Guest guest]

hi i have been on it for several years ..first as a liquid but had it made

specially without sweetners so it was bitter @ 3mg than i had it uped to

5mg as i felt my body had become used to it and benefited more @ 5mg ..i

was tested for natural killer cell and borderline low. but never retested

... i now take it in capsule form from apohtecure in texas ( md made the

switch for all their patinets)..i had no side effects from it and am

usually a super senitive pwc .i was told orginally by the pharmcist to take

it betwen 9pm and 3am and take it an hour after eating my dinner meal but

forgot whey it was that specific time , maybe ca++ who has alot expermance

thru dr bilhari one of the pioneers in it could help ..good luck tealk

> [Original Message]

> From: <jschm111@...>

> < >

> Date: 12/21/2005 9:00:12 PM

> Subject: Re: Low Dose Naltrexone

>

> I'm about to start LDN, 3 mg. Does anyone else take it? If so, do you

take

> it at night? Anything specific to look for, benefit or side-effect-wise?

>

> Thanks,

>

> Jim

>

>

>

[Guest guest]

LDN was one of the first really effective interventions for us.

Unfortunely, over the course of time, my son's ammonia level rose and I

didn't know that that was what was going on. When I pulled the LDN, he

had signficant bump consistent with ammonia levels dropping. At that

point, I still didn't understand that that was what was going on. It

took some other stuff happening for me to identify the problem.

Somehow the LDN exacerbated it, which doesn't really surprise me, given

that it implicates the immune system. We are not on it now because I

am looking at other alternatives for handling our completely

dysfunctional immune system issues, but I certainly wouldn't hesitate

to try it again if what I have planned doesn't work. The initial

positive changes we saw were in poops, mood, articulation, and gross

motor. Really, an upwards bump across the board. If you try it, watch

out for the secondary effects of screwing around with the immune

system, to which I was rather oblivious.

Best,

Anne

>

> Is anyone using this with any success? My son has a follow up doctors

> appointment in a couple of weeks and I thought about asking about

> this. Thoughts... concerns.. insults??

>

> Thanks!

>

[Guest guest]

Thank you for the detailed reply!

> >

> > Is anyone using this with any success? My son has a follow up

doctors

> > appointment in a couple of weeks and I thought about asking

about

> > this. Thoughts... concerns.. insults??

> >

> > Thanks!

> >

>

[Guest guest]

There is a LDN group out there that can probably provide you with lots

of info. I think, like most things, it works for some kids and not for

other. It was a bust for us. Our son lost what little language he had

after being on TD-LDN for ten days.

Pamela

" Courage is doing what you're afraid to do. There can be no courage unless

you're scared. "

Eddie Rickenbacker, top US fighter ace, WWI

_____

From: [mailto: ]

On Behalf Of markautismcharge

Sent: Thursday, September 07, 2006 12:04 PM

Subject: [ ] Low dose Naltrexone

Is anyone using this with any success? My son has a follow up doctors

appointment in a couple of weeks and I thought about asking about

this. Thoughts... concerns.. insults??

Thanks!

[Guest guest]

Anne,

Can you share how one would know (short of lab work) if ammonia

levels rising were starting to become a problem? How far into LDN did

this start happening to your son? Is there anything you could take

that you're aware of that could counteract this effect while using

LDN? My son seems to be doing very well on it after a bit of a rocky

start when bumping to full dose. But I am SO tired of having

interventions work well for a time & then peter out. I can't take it

again!

Thanks so much!

> >

> > Is anyone using this with any success? My son has a follow up

doctors

> > appointment in a couple of weeks and I thought about asking about

> > this. Thoughts... concerns.. insults??

> >

> > Thanks!

> >

>

[Guest guest]

I guess I would test ammonia levels by adding some alpha-keto

glutaric acid with each meal for a couple of days. If you see any

difference, that would signal to me that ammonia levels were higher

than they should be. That is what I have been working off of, not

labwork, so I hope my assumptions are correct.

Anne

> > >

> > > Is anyone using this with any success? My son has a follow up

> doctors

> > > appointment in a couple of weeks and I thought about asking

about

> > > this. Thoughts... concerns.. insults??

> > >

> > > Thanks!

> > >

> >

>

[Guest guest]

> My son seems to be doing very well on it after a bit of a rocky

> start when bumping to full dose.

Oh yay! Great news. I haven't gotten to it yet...

Nell