re: low dose naltrexone and macular degeneration #95681

[Guest guest]

Thank you Margaret for your response. If I start my mom on ldn for her wet

macular degeneration would she start at 3mg and work up to 4.5? Thank you so

much for your help! She was encouraged by your reply as she has seen how well I

have done with Crohn's and she would like to give it a try.

P.S. I'm new to this site and though I sent a message last night but I can't

find it. Probably doing something wrong but if this repeats please forgive me!

[Guest guest]

, as I understand it, the only reason people start low is to adjust the body slowly to the changes, but some people go straight to 4.5. From what I've read MS people tend to stay on 3 but not all. So it's up to your mum. Why not see how she goes at 1.5 then either increase by .5 when she feels adjusted, or double it to a maximum of 4.5. If she feels that's not right, she can lower it for a while. She will be the best judge.I was thinking about wet and dry, and assume that I'd gone into the wet phase and that LDN sent it back to dry, but I must admit I've not found out much detail about it and as I say it's hard to get doctors interested in what happened.I also take 1000mg omega 3, Vits B complex, C, D3, and sometimes E. The Nutrof Total has lutein, some other stuff, and

zinc and copper. I'm going to buy the ingredients separately as it'll be cheaper (Nutrof's not refunded) and I can take the zinc and copper separately. If you want to know more about that, I can give you the quantities and ingredients.I'm glad your mother is encouraged. I'll be keeping my fingers crossed for her.MargaretFrom: dirwin1965 <dirwin1965@...>low dose naltrexone Sent: Mon, June 14, 2010 2:18:16 PMSubject:

[low dose naltrexone] re: low dose naltrexone and macular degeneration #95681

Thank you Margaret for your response. If I start my mom on ldn for her wet macular degeneration would she start at 3mg and work up to 4.5? Thank you so much for your help! She was encouraged by your reply as she has seen how well I have done with Crohn's and she would like to give it a try.

P.S. I'm new to this site and though I sent a message last night but I can't find it. Probably doing something wrong but if this repeats please forgive me!

[Guest guest]

> , as I understand it, the only reason people start low is to adjust the

body slowly to the changes, but some people go straight to 4.5. From what I've

read MS people tend to stay on 3 but not all. So it's up to your mum. Why not

see how she goes at 1.5 then either increase by .5 when she feels adjusted, or

double it to a maximum of 4.5. If she feels that's not right, she can lower it

for a while. She will be the best judge.

******************

There are two ironies with this protocol.

Many people start low, fearing the effects of the LDN. I don't know where this

fear came from, but it has really blown out of proportion this last year on this

list.

If you don't feel anything from the LDN, then it is probably not working. If you

understand that LDN working produces changes in your body, you will quit fearing

those changes. They should be looked upon as a good thing, not something to be

avoided.

The second problem is that the LDN " side effects " come with a change in dosage.

So, all of those folks living in fear of the side effects will be having them

for months and months as they bounce their dosage around, trying to eliminate

those very positive side effects.

If you get side effects every time you increase the dosage, and you don't do the

Behari protocol of starting at 3mg and going to 4.5mg, or even just start at 4.5

and ride it out, then each incremental dosage increase will keep the body in

flux and many seem to be giving up in frustration while minutely analyzing every

twinge, moment of sleep, or dream, until they are too miserable to go on using

it. This is surely a loss to the hopes of LDN users.

While admitting that there could be very rare exceptions to this rule, we need

to get back to the fact that LDN can do no harm. For those fearing sleep

disturbance (which only happens in a portion of folks starting it, not all),

then get it over with. Start taking it as was shown best in hundreds of patients

of Dr. Behari's and at least an equal number here on this list.

The fear of taking LDN, being propagated here on this list lately, is way out of

line. I know that Art posts over and over again that LDN is not a stand alone

treatment. Maybe he needs to add a notice that LDN has been shown in most

patients to be taken at 3mg and then 4.5mg. If people want to play with it, they

should sign on to the very low dose newsgroup, which has been changed, I believe

to the unusual dose newsgroup to accommodate those taking it twice a day, etc.

When those pioneers have a new protocol that works for a large number of people

after a couple of years on the protocol, then it can be added to the standard

advice. Would that be fair?

Francie

LDN-for-MS.com My story

[Guest guest]

Glad you've pointed all that out, Francie. MargaetFrom: FrancieS <francie@...>low dose naltrexone Sent: Thu, June 17, 2010 5:14:57 PMSubject: [low dose naltrexone] Re: low dose naltrexone and macular degeneration #95681

> , as I understand it, the only reason people start low is to adjust the body slowly to the changes, but some people go straight to 4.5. From what I've read MS people tend to stay on 3 but not all. So it's up to your mum. Why not see how she goes at 1.5 then either increase by .5 when she feels adjusted, or double it to a maximum of 4.5. If she feels that's not right, she can lower it for a while. She will be the best judge.

******************

There are two ironies with this protocol.

Many people start low, fearing the effects of the LDN. I don't know where this fear came from, but it has really blown out of proportion this last year on this list.

If you don't feel anything from the LDN, then it is probably not working. If you understand that LDN working produces changes in your body, you will quit fearing those changes. They should be looked upon as a good thing, not something to be avoided.

The second problem is that the LDN "side effects" come with a change in dosage. So, all of those folks living in fear of the side effects will be having them for months and months as they bounce their dosage around, trying to eliminate those very positive side effects.

If you get side effects every time you increase the dosage, and you don't do the Behari protocol of starting at 3mg and going to 4.5mg, or even just start at 4.5 and ride it out, then each incremental dosage increase will keep the body in flux and many seem to be giving up in frustration while minutely analyzing every twinge, moment of sleep, or dream, until they are too miserable to go on using it. This is surely a loss to the hopes of LDN users.

While admitting that there could be very rare exceptions to this rule, we need to get back to the fact that LDN can do no harm. For those fearing sleep disturbance (which only happens in a portion of folks starting it, not all), then get it over with. Start taking it as was shown best in hundreds of patients of Dr. Behari's and at least an equal number here on this list.

The fear of taking LDN, being propagated here on this list lately, is way out of line. I know that Art posts over and over again that LDN is not a stand alone treatment. Maybe he needs to add a notice that LDN has been shown in most patients to be taken at 3mg and then 4.5mg. If people want to play with it, they should sign on to the very low dose newsgroup, which has been changed, I believe to the unusual dose newsgroup to accommodate those taking it twice a day, etc. When those pioneers have a new protocol that works for a large number of people after a couple of years on the protocol, then it can be added to the standard advice. Would that be fair?

Francie

LDN-for-MS.com My story

[Guest guest]

"When those pioneers have a new protocol that works for a large number of people after a couple of years on the protocol, then it can be added to the standard advice."Why does a therapeutic protocol have to work for a large number of people before it can be added to the standard advice? One of the benefits of LDN therapy is its ability to treat many different diseases, and as it is an immuno-modulator, and immune and neuroendocrine systems dysfunctions are often highly individual, the protocol that employs a gentle introduction of LDN with a gradual titering up of the dose to that best tolerated and effective should definitely be part of the standard protocol - a variant of it.One of the problems with conventional medicine is the search for the one-size-fits-all solution to disease. This is a

favorite approach of Pharma as it allows them to develop a single drug for everyone with a particular disease in hopes of huge profits when everyonepossible is using the drug. This approach fails patients, and consistently so. We are all here because Pharma's drugs failed us.So let's not apply the same philosophy of exclusion to unique health situations in regard to LDN and the people it helps as Pharma applies to its drugs and millions of people suffering from one disease or another. If there is not open-mindedness and acceptance of unique types we may lose many potential LDNers who, because their individual genetic makeups can be damaged in different ways from ours by the various chemical insults to them, require approaches that differ from what you call "standard advice" (a lot like that "standard of care" we have learned to cringe at).Jackie---

On Thu, 6/17/10, FrancieS <francie@...> wrote:From: FrancieS <francie@...>Subject: [low dose naltrexone] Re: low dose naltrexone and macular degeneration #95681low dose naltrexone Date: Thursday, June 17, 2010, 10:14 AM> , as I understand it, the only reason people start low is to adjust the body slowly to the changes, but some people go straight to 4.5. From what I've read MS people tend to stay on 3 but not all. So it's up to your mum. Why not see how she goes at 1.5 then either increase by .5 when she feels adjusted, or double it to a maximum of 4.5. If she feels that's not right, she can lower it for a while. She will be the best judge.******************There are two ironies with this protocol. Many people start low, fearing

the effects of the LDN. I don't know where this fear came from, but it has really blown out of proportion this last year on this list. If you don't feel anything from the LDN, then it is probably not working. If you understand that LDN working produces changes in your body, you will quit fearing those changes. They should be looked upon as a good thing, not something to be avoided.The second problem is that the LDN "side effects" come with a change in dosage. So, all of those folks living in fear of the side effects will be having them for months and months as they bounce their dosage around, trying to eliminate those very positive side effects. If you get side effects every time you increase the dosage, and you don't do the Behari protocol of starting at 3mg and going to 4.5mg, or even just start at 4.5 and ride it out, then each incremental dosage increase will keep the body in flux and many seem to be giving up in frustration

while minutely analyzing every twinge, moment of sleep, or dream, until they are too miserable to go on using it. This is surely a loss to the hopes of LDN users. While admitting that there could be very rare exceptions to this rule, we need to get back to the fact that LDN can do no harm. For those fearing sleep disturbance (which only happens in a portion of folks starting it, not all), then get it over with. Start taking it as was shown best in hundreds of patients of Dr. Behari's and at least an equal number here on this list. The fear of taking LDN, being propagated here on this list lately, is way out of line. I know that Art posts over and over again that LDN is not a stand alone treatment. Maybe he needs to add a notice that LDN has been shown in most patients to be taken at 3mg and then 4.5mg. If people want to play with it, they should sign on to the very low dose newsgroup, which has been changed, I believe to the unusual dose

newsgroup to accommodate those taking it twice a day, etc. When those pioneers have a new protocol that works for a large number of people after a couple of years on the protocol, then it can be added to the standard advice. Would that be fair?FrancieLDN-for-MS.com My story

[Guest guest]

Very well said.

The Low Dose Naltrexone Height/Weight/Gender/Dosage Poll 2006

http://ldn.proboards.com/index.cgi?action=display & board=personal & thread=867 & page\

=1#5836

--

Why some May have problems with or fail LDN

http://preview.tinyurl.com/dfv5ou

--

For those having trouble w/LDN no longer working

http://preview.tinyurl.com/q9obxs

--

Dr McCandless, seldom is LDN stand-alone treatment

http://ldn.proboards.com/index.cgi?board=links & action=display & thread=148

--

Other reasons of negative responses to LDN by Dr. Jaquelyn McCandless

http://ldn.proboards.com/index.cgi?action=display & board=forum & thread=448 & page=1#\

6347

Art

>

> > , as I understand it, the only reason people start low is to adjust the

body slowly to the changes, but some people go straight to 4.5. From what I've

read MS people tend to stay on 3 but not all. So it's up to your mum. Why not

see how she goes at 1.5 then either increase by .5 when she feels adjusted, or

double it to a maximum of 4.5. If she feels that's not right, she can lower it

for a while. She will be the best judge.

> ******************

> There are two ironies with this protocol.

>

> Many people start low, fearing the effects of the LDN. I don't know where this

fear came from, but it has really blown out of proportion this last year on this

list.

>

> If you don't feel anything from the LDN, then it is probably not working. If

you understand that LDN working produces changes in your body, you will quit

fearing those changes. They should be looked upon as a good thing, not something

to be avoided.

>

> The second problem is that the LDN " side effects " come with a change in

dosage. So, all of those folks living in fear of the side effects will be having

them for months and months as they bounce their dosage around, trying to

eliminate those very positive side effects.

>

> If you get side effects every time you increase the dosage, and you don't do

the Behari protocol of starting at 3mg and going to 4.5mg, or even just start at

4.5 and ride it out, then each incremental dosage increase will keep the body in

flux and many seem to be giving up in frustration while minutely analyzing every

twinge, moment of sleep, or dream, until they are too miserable to go on using

it. This is surely a loss to the hopes of LDN users.

>

> While admitting that there could be very rare exceptions to this rule, we need

to get back to the fact that LDN can do no harm. For those fearing sleep

disturbance (which only happens in a portion of folks starting it, not all),

then get it over with. Start taking it as was shown best in hundreds of patients

of Dr. Behari's and at least an equal number here on this list.

>

> The fear of taking LDN, being propagated here on this list lately, is way out

of line. I know that Art posts over and over again that LDN is not a stand alone

treatment. Maybe he needs to add a notice that LDN has been shown in most

patients to be taken at 3mg and then 4.5mg. If people want to play with it, they

should sign on to the very low dose newsgroup, which has been changed, I believe

to the unusual dose newsgroup to accommodate those taking it twice a day, etc.

When those pioneers have a new protocol that works for a large number of people

after a couple of years on the protocol, then it can be added to the standard

advice. Would that be fair?

>

> Francie

> LDN-for-MS.com My story

>