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[user=67]Todd WI[/user] wrote:
I took LDN for about a week and it was like I had been hit by the proverbial truck. I didn't take one or two steps back, I took them all back and then some. It was the first time while on AP that I had to use my crutches. It was the worst flare (herx?) both in terms of severity and length that I've experienced since starting AP. I stopped the LDN and the flare started subsiding. I'm back to doing well again, but still not perfect.
The obvious question is: was it a herx? It could have been, but personally, I don't think it was. I say that based on the severity and the length of the flare and the fact that after it I didn't return to a better condition than before the flare. So for me, LDN is definitely off the table.
Todd
Todd,
I am wondering what dosage you took of the LDN. Do you think that it was too high? Just curious because we've been investigating it for a while for my husband's PsA.
MJDoes anyone know what doctors who prescribe LDN write as the diagnoses on the script? I can't seem to find that info anywhere. I know that in its larger dose, it's used to get people off of addictive drugs…but in its low dose form, what would a doctor write that it is treating so that insurance will cover it?
MJLinda,
I know this is a late answer to your question. Yes LDN has to be a presription and then it has to be compounded to be used in a smaller dosage. The presription is for 50 or 100 mg of Naltrexon, the compounding pharmacy cuts it down to 4.5 mg or less. I could tell after four weeks how well LDN worked, I had less pain and I have been able to stand more upright. Now after 5 months (seems longer) I have done so much better. I still do Minoxin and Biaxin on alternate days. I no longer use the lectric carts at the stores and do all my walking pushing a shopping cart. I started to use the vacum cleaner too which before I could hardly push around and I had either my husband vacum or someone had to come and do it for me and I had to pay for it. I am also back of cooking meals from scratch instead out of a box LOL:roll-laugh:. So much healthier and it tastes better. Even going out is more fun now.
I will be in San Antonio April 9, 10 and 11, 2010 for a German National Singing Festival which will be held at the Convention Center. Come and hear our large choirs sing.
Eva:D
Eva Holloway
mj47
I had to pay at the compounding pharmacy but there is a link when you type in “Low Dose Naltrexone” about some other pharmacies and they cost less then what I paid, (115 Dollars) I think I will switch to them when I get my new script sometimes this year. You get your presciption from your doctor and send it there or have your doctor send it to them. Make sure you don't get a time release filler since that does not work well, you need something that goes right away into your system.
Eva:D
Eva Holloway
[user=67]Todd WI[/user] wrote:
I took 3MG nightly. I don't think it was too much, but who knows?
Todd,
That seems like a reasonable dose, but is that the dose you started at? I read that people should start low, like 1.5 mg, and work their way up. People who do that are more likely to continue on LDN. Those who don't do that are more likely to give up due to “side effects”.
How much Minocin were you taking at that time? And were you taking any other medications?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI just made a new post today re: Dr. Berkson and LDN treatment. I'm hanging in at 3 months and it took a lot of playing around with dosing for me. I'm still at 1mg but hopefully in Feb I'll get up to 1.5mg and stay there for a while.
Everything that Judy said sounds like words from my mouth. I'm glad I have hung it since I believe LDN to be a little miracle like homeopathic script med.
I make up my own solution with a 50mg Naltrexone tab and 50ml distilled water and put these in a little amber jar and use a dropper with 1ml and up measures. Very easy and inexpensive!!!!
Takes time to getting it right for your body. It's not a stand alone med, so I take all my other supps including MSM and 2 aspirin am and 2 pm.
Well, I'm up to 2mg and heading to 3mg I hope in March. Doing good. No other comments from anyone here? jam
Jam
I am taking 4.5 mg at this time. When I get my next script agin from the doctor should I just go to the regular pharmacy and get the pills and dilute them in the brown amber bottle? How long will each pill last? I have mine compounded and have to pay $115 for that. Do I get the distilled water at the pharmacy too. I seen several people say they doing it that way, I presume it cost me a lot less and I could take 4 mg if I wanted too, correct. I have been on LDN for six months now and doing a lot better. Does Naltrexone come in a pill form or capsule?
Eva:?
Eva Holloway
Eva, 50mg Naltrexone comes in a tab and say you get 30 tabs and go to Costco (cheapest prices) the 30 tabs could cost about $50 and this could be your yearly cost. I know you are taking 4.5mg and so you take more than me right now, but the tabs are SO MUCH less expensive. I initially got 15 tabs last Oct for $25 and I've only used 4 I think. But I'm still at 2mg. Something tells me I won't go higher than 3mg. Do you really think you need 4.5mg? Some have said they got up that high and then were able to got down to 3mg and are doing fine.
I'm taking it to avoid any hip/knee surgeries.
So far I have more Energy and much less overall pain. I deal with FM and OA, not RA. There is a database that has a lot of people who have given their reports on what they have and how much they take, etc. I'll post that and others can check it out too. I had a trick finger on my left hand and after a couple weeks on LDN the finger is back to normal. Hasn't done the trick thing again….
Again, LDN is NOT a stand alone medicine, but pretty innocent as far as side effects. I worked thru the constipation issues and sleep like a log. And so many are being helped. Especially MS people. I'm in for the long haul I believe.
I still take high doses of MSM but now maybe only 20 grams per day instead of the 30 grams. I'll post that data base. jam
You can buy distilled water at the markets. I use only distilled water and add my minerals and alkaline drops for drinking. Just use plain distilled water for the LDN. It's the purest water, no minerals, contaminents, etc.
Here it is: ldndatabase.com….lists all the illness categories and the people with how much LDN they take and how they are doing. Good information.
Jam,
I am not so much worried about the price, Medicare will pay for this medication if I get just the tablets.
Where do I get the other stuff? amber bottle, distilled water? Does the regular pharmacy has all that? I don't pay anything for my meds untill I hit 2500 Dollars, so I still have two refill at the compounding pharmacy and there I have to pay for the compounding, which one will come up in March, and I wonder if I could ask them to change it??????? Would be nice if I could do it myself in the amber bottle and distilled water. I would save 115 Dollars every three months :roll-laugh:
Eva:D
Eva Holloway
Eva, I use an empty B12 glass amber jar. And I get the dropper from the Costco Pharm for free. They are in all drug stores or you can buy one. I buy Jarrow B12 and they come in glass amber wide mouth little jars. I get my distilled water from the market. I'm on a fixed income and I don't have Medicare drug ins. so I'm very careful how I spend my money. I use only distilled water anyway, so I always have it. Or if a person has RO water in their home, that is the purest form too. No minerals/chemicals.
Again, if you decide to go this route, you shake the LDN tab and water real good and then refrigerate it and take it out with the dropper. Do not shake it again, as the filler sediment settles on the bottom and we don't need to stir that back up.
Jam,
how much distilled water per pill? I always have an empty amber glass bottle from some kind of supplement.
Eva:D
Eva Holloway
it's 50mg tab to 50ml distilled water. I mentioned it above. I fill the dropper up to the 5ml line 10 times. I first pour my distilled water in a glass and from there fill it with the dropper and into the jar. I make mine up in the mornings and keep it overnight in the refrig as I take mine in the AM. It's good to keep for about 24 hours or so in the refrig to let it get all settled. Again shake it when you make it up and don't shake the bottle each time you take your dose.
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