Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
4.5 mg, everynight, before bed. Been on it about 10 months or more.
Don't know why I was put on it...my guess is either to help my immune system (though I never tested positive for autoimmune disease (i.e., ANA) except for high thyroid antibodies, but have very low CD57), or maybe to help symptoms...though my main symptom is fatigue.
#5--don't know, probably until I'm fully better and want to try going off it
#6--I noticed after starting LDN that when I would add a new antibiotic (even things I had taken in the past without much response) I would have an actual, defined herx. I was never a "herxer" before. So I think it did help mobilize or normalize my immune system to actually work. No proof of that though.
No negative side effects noticed. Some people get insomnia.
Posts: 4590 | From Midwest | Registered: Jun 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
1-What is your dose of LDN? 4.5 at bedtime
2-How often do you take it? not anymore
3-How long have you been on it? I did it for 4 months
4-What primary reason were you put on it? I wanted to try it, doc was fine with it
5-How long does your Dr. intend to keep you on it? n/a
6-What benefits have you found from using it as well as any unwanted side effects? Seemed to make me sleep deeply and be hard to rouse. That went away. I stopped noticing anyting else in terms of labs or effects, so stopped.
Posts: 3528 | From US | Registered: Apr 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
4.5 at bedtime, then dropped to 2 every other day(see why below)
Took it for little over 4 months, then stopped
Was put on it to increase my immune system
Doc and I stopped because of severe side effects, and no improvement in bloodwork of feeling better
For teh first 14 days, I did fine, no problems. Then over next 14 days began to have increasing insomnia, anxiety, bed wetting in middle of night, depression. So we tappered it down to 2 mg, still had horrific insomnia. Then tappered back to 2 mg every other night, and still had problems. After 4 months, I actually saw a decrease in my immune cell counts, so we stopped.
I posted extensively about LDN a month or so ago on LDN, dosing, side effects etc. Thre is a lot of new information about how to use it. It might be better for some people to use lower doses every second or even third day. Do a search for my name and LDN. A
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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I'm at 3 mg. Started at 1.5 mg. Moved up to 3 mg after two weeks after herx subsided, then to 4.5 mg after another two or so weeks. Now I'm back down to 3, trying to see if this change will help with MS type stuff, weakness, buzzing, spasms, spasticity, in legs.
2-How often do you take it?
Nightly, between 9:30-10:30, with dinner.
3-How long have you been on it?
Over two years.
4-What primary reason were you put on it?
I was bedbound, stuck in the dark, reactive to everything, abx were making me worse. The hope was that it would help ease immune syx dysfunction, which it did to an extent -- especially early on.
5-How long does your Dr. intend to keep you on it?
Indefinite.
6-What benefits have you found from using it as well as any unwanted side effects?
Helped get me out of bed, and allowed me to return to antimicrobial therapy, though this time all alt and no abx. I don't know what, if anything, it's doing now, but am still taking it. Negatives: very intense herxes or reactions at the beginning, after than there have been no negatives.
I have been thinking of trying to take off a day or two a week to see if this helps it work better, as there is talk that it can accumulate and clog receptors (or something along those lines).
Good luck.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Thanks for all the info thus far.
I also am considering taking a day off here and there as well as I have heard the same reports you have, some finding added benefit/different results by pulsing it.
I do not know enough about it to say whether it can accumulate or clog receptors, only that its a powerful drug in high enough dosages so that possibility it is something to consider.
Thanks again
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I stopped doing it only because my pharmacy raised the price (I've since been given links to cheaper compounding pharmacies by the way- $15/month approx???). However, it really seemed to help with my candida- I was on LDN and a bunch of antibiotics for months and didn't have a major vaginal candida problem despite not maintaining a completely strict diet (I eat fairly low-carb but occasionally eat fruit). I'm about to try it again, will let y'all know if it helps with the candida again.
-------------------- Symptom Free!!! Thank you all!!!!
quote:Originally posted by MariaA: I stopped doing it only because my pharmacy raised the price (I've since been given links to cheaper compounding pharmacies by the way- $15/month approx???)
Care to share ? My compounding charges $50!
Posts: 856 | From MA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I am one of the people that PM'ed Maria.
I'll PM you the pharmacy's name and number.
Posts: 4590 | From Midwest | Registered: Jun 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Gideon Pharmacy. They are who I use.
This is off the LDN website-
How can I obtain LDN and what will it cost? > LDN can be prescribed by your doctor, and should be prepared by a reliable compounding 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 prescriptions are now being filled 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 pure 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 does monthly quality control testing on its LDN, accepts prescriptions from any licensed physician, checks for insurance coverage, and includes shipment anywhere in the US or to other countries. In contrast, Gideon's Drugs charges $15 for a one month's supply of 4.5mg LDN but it does not accept insurance and it will charge for shipment. > Pharmacies that are known to be reliable compounders of LDN: Pharmacy Phone Fax Irmat Pharmacy, New York, NY (212) 685-0500 (800) 975-2809 (212) 532-6596 Gideon's Drugs, New York, NY (212) 575-6868 (212) 575-6334 The Compounder Pharmacy, Aurora, IL (630) 859-0333 (800) 679-4667 (630) 859-0114 The Pharmacy Shop and Compounding Center, Canandaigua, NY (585) 396-9970 (800) 396-9970 (585) 396-7264 McGuff Compounding Pharmacy, Santa Ana, CA (714) 438-0536 (877) 444-1133 (877) 444-1155 Skip's Pharmacy, Boca Raton, FL (561) 218-0111 (800) 553-7429 (561) 218-8873 Smith's Pharmacy, Toronto, Canada (416) 488-2600 (800) 361-6624 (416) 484-8855 Dickson Chemist, Glasgow, Scotland +44-141-647-8032 +44-800-027-0673 +44-141-647-8032
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I've been on compounded LDN since November, starting at 4 mg and increasing to 4.5 mg after one month. It was doing great things for me after an initial 10 day adjustment period that wasn't much fun. I had better sleep (4 hours at a time!), longer between die off cycles (16 days became 27 days), and improved immune system overall (no longer sick two weeks of the month with viruses).
However, in the past six weeks or so, I've "lost" the sleep and die off benefits it gave me. This is not an unusual pattern for me. A lot of drugs and supplements that work well quit working after a certain period of time.
I've found one person who said her LLMD prescribes between 4.5 mg and 6 mg for Lyme patients. Anyone actually done 6 mg?
Posts: 6 | From Texas | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
1-What is your dose of LDN? 4.5mg
2-How often do you take it? every night
3-How long have you been on it? Well over a year, long enough that I cannot remember exactly when I started.
4-What primary reason were you put on it? For immune support, reduce inflammation, treatment of neuro/MS type symptoms.
5-How long does your Dr. intend to keep you on it? He has not stated an end point.
6-What benefits have you found from using it as well as any unwanted side effects? Benefits, It does seem to help reduce inflammation. Side effects, I had some vivid dreams when I started at the 2mg dose. I did not have any problems working up to 3mg then 4.5mg later.
Posts: 5237 | From here | Registered: Nov 2007
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4-What primary reason were you put on it? I asked for it. Have been "diagnosed" with MS, and it is supposed to help.
5-How long does your Dr. intend to keep you on it? n/a
6-What benefits have you found from using it as well as any unwanted side effects? I think it is helping my neuro symptoms; I don't feel so seizure-y and wobbly in my head. I have very vivid dreams, which is ok, they're funny sometimes and I wake up laughing! I tried bumping up to 3 mg, but had bad fatigue the next day, so I'm at 2 for now. Will try upping it again soon. I think it's helping me.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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