Low dose Naltrexone

[Christopher]

Bad news....he didn't go for it. Said he was not comfortable prescribing something that he'd never prescribed before, especially as it's off-label.

Anyone know how to find out what doctors are trying this for CFS?

-chris

 

[Sushi]

Anyone know how to find out what doctors are trying this for CFS?

-chris

Hey that's too bad. I've found that compounding pharmacies will tell you what doctors are prescribing things you are interested in--so if you have one locally try giving them a ring. That is how I found one of my doctors.

I hope you get it--it doesn't help everyone but I know quite a few who have been helped a lot--including me!

Sushi

 

[Christopher]

Hey that's too bad. I've found that compounding pharmacies will tell you what doctors are prescribing things you are interested in--so if you have one locally try giving them a ring. That is how I found one of my doctors.

I hope you get it--it doesn't help everyone but I know quite a few who have been helped a lot--including me!

Sushi

Yea I guess that'll be my next step. Sarah knows of a doctor near me that uses it as well, so I could try to see him as well. I wanna try it at least - nothing to lose.

Wasn't really a good morning for me. When I realized that my doc wasn't into it, I started crying...was really embarrassing. It's really not even a big deal - I guess it was just an overreaction to disappointment. He basically told me that there was nothing he could do for me, and suggested that I see a specialist (this doctor was my father's primary doctor, and then mine). I feel bad that I acted that way in front of him, because he was the doctor my dad first saw when he was eventually diagnosed of cancer. He's a good guy, just not a specialist.

Anyway, sorry to hijack the thread. So sushi, you just call up a compounding pharmacy and ask what doctors in my area Rx the stuff?

thanks for your help,
chris

 

[Marylib]

having the breakdown now and then

Hey Chris,

I bet you won't find one person on this board who has not burst into tears (or curses) in a doctor's office at least once.

I have heard that some people get LDN at an overseas pharmacy without an Rx. If you get on one of those LDN yahoo groups, you can find out. Not that I recommend it, but I know people who have done it.

Just beware the yahoo groups for LDN. There is one called LDN for CFS but few people there actually have CFS. The groups are mainly there to help build support for making LDN available in general, but in my opinion, you can get pretty frustrated at that group if you actually have CFS. Sushi can help you here and a few others I believe.

 

[*GG*]

To Chris and Sarahg

Chris,

Try this website: http://www.co-cure.org/USA_PA.htm

Might want to also try this website: http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5420171/k.7A8D/ACAM_Homepage.htm and if the "FInd a Physcian..." link does not work try "contact us" my dr is on both of these websites and he prescribed me LDN.

sarahg, in regards to sleep!

I started with nightime dosing, but switched to daytime since it interfered with my sleep to much, hopefully it is just as effective this way?! Drs appt in a couple of weeks and will mention.

 

[Sushi]

Christopher,

I am a member of the Yahoo group on LDN for CFS, but as Marylib says, it is not very helpful. I think if you go to some of the international pharmacies online you'll find the option to buy it without a prescription. I think people usually get an Indian brand. Then it is just a question of whether it sails thru customs.

But a real doc is better. I don't know where you live, but if you are willing to say, maybe someone can suggest a doctor who prescribes it. But it also doesn't hurt to call a local compounding pharmacy as well--mine locally was very helpful as was another one when I lived in another city--told me the docs prescribing the med I needed.

Hope you get to give it a try. And yes, anyone with CFS, has one time or more started to cry at the doctor's office--me for sure!

Good luck,
Sushi

 

[oerganix]

naltrexone

If you're not in the US you can get it off the internet at www.goldpharma.com without a prescription. They actually charge you for one at check out. I haven't done it yet - still trying to see if I can get it locally.

It is from a maker in Spain, for about $78 including Rx and shipping, for 14 25-mg capsules, which you would have to divide, either by crushing and dividing, or by mixing in 25 mg distilled water and using an eye dropper with ml markings to get the smaller dose. I calculate that would be about a 6 mo supply, more if it takes a long time to get to the maximum dose of 4.5 mg.

I saw a local doc today and he's going to let me know by Friday whether he can get it imported for me and then prescribe it.

The site www.lowdosenaltrexone.org has pharmacies listed that will compound and ship to you, if you get an Rx.

 

[sarahg]

ok, Chris

Check these out if you go the "find a pharmacy to find a Dr" route

http://ppcpharmacy.com/
this looked like the most reputable Philly area one. Along the way, I learned the first pharmacy school in the US was in Philadelphia. I suppose that will be my useless fact for the day.

http://www.hazlecompounding.com/HC_about.shtml
I keep thinking of switching to this pharmacy for compounded stuff. Apparently it is the oldest compounding pharmacy in the US. It is much closer to me than it is to you but they get orders from all over PA so they may well know of someone.


I have a bunch more bookmarked if these are dead ends, I've been compounding pharmacy hunting myself.

 

[sarahg]

I started with nightime dosing, but switched to daytime since it interfered with my sleep to much, hopefully it is just as effective this way?! Drs appt in a couple of weeks and will mention.

I feel like I read somewhere that this will diminish it's effectiveness, but it would seem that would be better than not taking it. And besides that, I can't for the life of me remember where I read that. I am curious to hear what your Dr. thinks, and if you think it is helping you. If it's helping a little, then at least I'd know I could try that after I get sick of not sleeping!

 

[Sushi]

The two main researchers, Bihari and Zagon, differ in their opinion as to whether night-time dosing is more beneficial. I think it is Bihari who says that the optimal time to take it is between 10 pm and midnight so that the opiate receptors will be blocked during the time (wee morning hours) when the body naturally produces endorphins--then the message goes out, we aren't making enough--make more!

The other (Zagon I think) says that the only reason to take it at night is that because while your opiate receptors are blocked you're not going to feel on top of the world, so better to sleep through it.

I think they probably will need to do more research here.

Sushi

 

[oerganix]

naltrexone

I read on another site that Dr Bahri said he's sorry he started "that rumor" that it has to be taken at night. He now says to take it however it works for you.

I'm extemely frustrated now, trying to get naltrexone, in any form. Can't get it here in Nicaragua, so I went to some of the online sources.

The pharmacy on the LDN online site has a website but their email address isn't working - I get the mailer-daemon message saying the mailbox is full. I emailed several other "staff" email addresses and got the same message from some of them, and no response from the others. Does anyone know whether they would accept the prescription of a Nicaraguan doctor? I have that.

I tried to order it from the Indian online pharmacy, using my Master Card, and the check out process asked for some "security code" for my card, that I don't have, have never had, and have never been asked for before. Another dead end.

I could use goldpharma.com, apparently, but they only use the local postal "services" and I have had 1 out of 3 packages to me here disappeared by the local postal "service". So, I'm not willing to put $78 on my credit card and roll the dice, with those odds.

So, I just need to chill out for a day or two, from all the frustration and stress.

 

[Sushi]

Naltrexone--Canadian pharmacy?

Does anyone know whether they would accept the prescription of a Nicaraguan doctor? I have that.

I understand that kind of frustration! Here is a thought: the Canadian pharmacies accept US prescriptions (lots of them online)--maybe they would accept your prescription (You might need it written in English?).

Wouldn't hurt to email them. Or, if they don't have email addresses listed, I'd be happy to call them for you and ask.

Keep trying! Those who are helped by this drug, are helped a lot--including me.

Sushi

 

[Marylib]

For oreganix

I get another med prescription filled from Canada, since NZ for some odd reason does not import that particular med. (You can get LDN here, with an Rx from a doc).

I get my Rx from Canadadrugs.com. They are good service-wise and if you email them at the international orders department, they will tell you what you would need to send them.

If you order online, it can be a little confusing -- same meds are listed several times and are often at different dispensaries...just double check.

I think they do have naltrexone, but it is in high dose tablets so you would have to dissolve them and all that.

 

[Snowcat]

Belmar Pharmacy

This is the pharmacy my doc recommended. No idea if they'd take a foreign prescription, but it can't hurt to ask. Customer service is great, their quality is better than anywhere else I've tried, and they're quite affordable - $41 for 90 4.5 mg tabs.

http://www.belmarpharmacy.com/low_dose_naltrexone.htm

 

[oerganix]

Thanks

Thanks to all of you. I'm still checking out your suggestions. It's helping with the frustration, at least.

So far, the Canadian pharmacies have high minimums, like 100 tabs, which would be enough for years at LDN dosages. Or they don't ship by FedEx, DHL or UPS. I can't trust the postal system here, so I need some kind of more professional shipping.

Still working on it. Waiting to hear back to some emails I've sent out. Patience is not my strong suit.

Thanks again. It's so good to be in touch with folks like you!

 

[Marylib]

Have you checked out Skip's Pharmacy? They are in Fla. and are famous on the LDN boards.

 

[Aftermath]

Ldn

I'm really thinking about giving this a try.

One of the most appealing things about it is that unlike many other experimental therapies for this illness, LDN therapy appears to be quite inexpensive.

 

[Marylib]

If you do, Aftermath, you may want to start with a very tiny dose and work up. Also, depending on your sleep issues, you can try both daytime and nighttime dosing.

 

[Aftermath]

LDN Doseage

What is considered low? 4.5mg, or even smaller than that?

What I absolutely can't get over is how inexpensive LDN therapy is. This may be the cheapest treatment modality that I have pursued in over 15 years.

 

[cfs since 1998]

What is considered low? 4.5mg, or even smaller than that?

What I absolutely can't get over is how inexpensive LDN therapy is. This may be the cheapest treatment modality that I have pursued in over 15 years.

Nooo 4.5mg is the maximum recommended dose. The ideal dose used to be 3mg but now it is also 4.5mg. Doses less than 1.5mg aren't effective. I believe this info is from the lowdosenaltrexone.com website.