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[user=269]Andrea[/user] wrote:
Is anyone trying this? and how is it working for you? My Doctor has suggested that I try it.
Hi Andrea,
I just started using LDN…first month on 2mg and just moved up to 2.5mg. I'm going slowly, as I tend to be a bit reactive. So far, so good. I think I am noticing a boost in overall sense of wellbeing and, although I had some insomnia in the beginning (first 10 days or so), I'm doing okay now. Probably too early for me to give a really thorough appraisal, as it's a longterm therapy and one really needs to be on it for a good 10 months or so to know if it's going to work or not.
Interestingly, Berkson's study on RAers with LDN was done in conjunction with minocycline therapy, so it's hard to know if LDN would produce the same result alone, but JFR (Judy in CA) may share her story with you, if you PM her or she sees this. She began on LDN prior to AP, so she can probably tell you more about its efficacy as a standalone treatment. As far as I can tell, though, the therapy compliments AP, because LDN works by boosting endorphin production to help modulate and nomalize immune function, which theoretically would enable bacteriostatic antibiotics (like the tetracyclines) to work more effectively.
http://www.youtube.com/watch?v=nttilGKpJvU
Hope this helps?
Peace, Maz
i was just researching this as well. doesnt seem to be too much information out there about it. the lowdosenaltrexone.org website simply mentions 10 patients were treated with it, and all had good results, but doesnt say how or how long:
Ten patients with this disease have been treated with LDN in recent years. In all ten patients the joint pain and swelling cleared, in some, leaving residual joint distortion. Two of the patients stopped LDN for several weeks because of travel. Both had an immediate exacerbation. One patient who was responding well on LDN had a mild exacerbation during a period of severe marital stress.
i watched the video above also, and as Maz points out the patients were treated with minocycline. As she says, it must be the LDN is helping the immune system to clear up what the antibiotics are killing off in terms of infection.
without antibiotics, what would LDN do? id imagine it would help the immune system destroy the joints faster?
[just received the Scammel book, read half of it in 2 days 🙂 ]
rajah99
I am on Minoxin and also on Biaxin for RA and DM. I have been on LDN now for 7 months and doing very well. I walked very bend over due to the muscle weakness, from the DM , but now I am almost upright. LDN does not destroy the joints, specially not when taking in the small amount it is taken. This is more in a holistic way than when taken in large amounts for someone taking narcotics or alcohol. There is plenty of info on the internet about LDN and my doctor did not hesitate to give it to me since I was not getting past the muscle weakness, I know she would not give it to me if it did not benefit my health.
Andrea,
if your doctor suggested it to you I think he/she would know why she thought it would be beneficial to you. We had some very lengthy discussion a week or so ago on RBF, if you go back and check you can find out lots of info.
Eva:D
Eva Holloway
Eva, Quick note. I'm STILL considering going to IA to see Dr. S about AP. Glad to know you are still doing well. I am stepping out in faith and calling him tomorrow to see if he will treat my DM with AP. More later. Thanks for all your encouraging news! Becky
Hi Andrea,
I love your picture.
I started LDN about 10 days ago. I started at 1.5 mg for the 1st month, then I will go to 3 mg for the 2nd month, then 4.5 mg. I had some night sleep problems for about a week, this weekend my sleep was normal. I only had 2 vivid dreams, darn. I also started Serracor NK about a week ago. It is to soon to tell what is working. I am feeling good now. My doc wants me to start real slow, because I haven't been doing very good for the last 1 1/2 yrs. I am on the mend now. I have more good days in a week than bad.
I have had lyme induced RA since 1997 and didn't find a doctor that would treat me till 2005. I did alot of holistic stuff in the beginning. I would not go on the drugs the rhummys wanted me to take. Now I am on Augmetin, bixain, and flagel (3 days a week). And 5mg of prednasone AM & PM for about 15 days. And lots of probiotics. I am hoping the LDN and Serrracor NK kick in so I can get off the steroids.
I will be real interested to see how others do on LDN and how long it takes.
lor
lor,
for LDN really to kick in I would say at least four months. I am at my 7th months and doing well.
Wish you well too and enjoy he energy you will get from LDN. It is a nice boost.
Eva:D
Eva Holloway
[user=2144]rajah99[/user] wrote:
without antibiotics, what would LDN do? id imagine it would help the immune system destroy the joints faster?
I'd say that's a definite possibility. I know of several people with RA who got worse after starting on LDN. I corresponded with one lady with RA who got much worse after starting on LDN. I tried to help her, but she seemed stubborn and would not listen to me. She insisted on continuing to take LDN even though there was a good chance she was incurring permanent damage as a result.
There's a member of this forum with PsA who had a bad response to LDN. His user name is Todd WI, and you can read about his experience here: naltrexone and Rheumatoid.
I think LDN is an important medical breakthrough, but one that should be used with caution. A cautious approach seems especially prudent for hypersensitive patients and those whose disease has a strong inflammatory component.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHello everyone.
I got this today. very interesting; an interview with Dr. Berkson:
Here?s an interview with Dr Burt Berkson on the above for those who are interested [url=http://www.maconrai ls.com/making- headway-against- autoimmune- diseases- with-low- dose-naltrexone/
http://www.maconrai ls.com/making- headway-against- autoimmune- diseases- with-low- dose-naltrexone
http://www.maconrails.com/making-headway-against-autoimmune-diseases-with-low-dose-naltrexon
Eva:D
Eva Holloway
Andrea, I have been on LDN since Dec 4th. I went strait to the 4.5 mg dosage at bedtime. I have it compounded. I had some sleeplessness and very scary dreams (I'm 6'3 and 225 lbs and don't scare too easy). I enjoy the sense of well being that has increased and my joints have gotten a little bit better. My psoriasis is the big winner as it is gone, and it stubbornly hung on for over a year. I'm not sure why some don't have a good response, while others do. I heard a Dr. M (she did the trials in Africa with LDN) say that the biggest problem she has seen with it is fungal issues. Also I have read that one needs to stay away from all immuneosuppressants, even natural ones like turmeric and ginger. Not sure however. I know that opiates and some pain relievers are contraindicated. Just had my blood work done and everything looks better. My ESR has dropped from 38 to 13!!! So now I hope to see the knees and finger swelling relent. All the best, jims:)
[user=1054]jims[/user] wrote:
I know that opiates and some pain relievers are contraindicated.
This is a very important point. Naltrexone is an opiod, but acts as an antagonist. It will knock any opiates right off the receptors and throw them into instant withdrawal. Naltrexone must be avoided if there are opiates in the system.
Eva, Hip hip hoorah!!!! My rheumy finally agreed to write a prescription for LDN and for Minocycline 100 mg. I just told him about all of YOU on this website that have had good results from using both of these meds and that I wanted HIM to write me scripts for both. He agreed that “what could it hurt” YEAH (This is after 1 YEAR of suffering with all the other meds he has prescribed for me.) I got the Min and will start it today BUT where can I get the LDN 1.5 mg. filled? Do you do a mail order pharmacy or what? My May's drugstore says they don't have Naltrexone except for 50 mg. tablets. Eva, did you do the 5 days of IV AP treatment or just start in on the Minocycline? Also, what do you think of the 100mg of it MWF? One other thing, I'm not sure about putting the Min. and LDN with the CellCept. Anyone else doing this together? Love to hear from you all. WE WILL get this terrible disease behind us!!!
[user=1800]bhodson[/user] wrote:
BUT where can I get the LDN 1.5 mg. filled? Do you do a mail order pharmacy or what?
Lots of people use Skip's Pharmacy:
http://www.skipspharmacy.com/?pgname=contact"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinBecky,
Good work on persuading your rheumy to help you with AP. Make a convert out of him and then we can add him to our list of docs. :roll-laugh:
Please ask your doctor and your pharmacist about coordinating these meds in a safe way. Good luck!
Take care…..kim
Any Apothcary (sp?) pharmacy could do it for you. It has to be compounded I believe. So glad you have gotten him on your side. Now, be prepared for the possible herxing and don't get discouraged if it happens. Just get through it and it always looks better on the other side.
I will start my LDN this weekend. Yeah!
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