Low Dose Naltrexone (LDN)
AnonymousFebruary 18, 2010 at 9:10 am
Has anyone hd experience with this treatment as an add on to whatever else you are doing? Though the research is scant, it looks promising. I’ve sent an email to my dr to ask him if it’s a good option for me to consider.
Be looking for your feedback!
February 18, 2010 at 10:28 am
Thank you so much for the info. Lately things have been tense on the forum, but I continue to read every day several times a day in hope of a post like yours!! I quickly googled it, it does sound very interesting and promising. Like my friends the worms (another thread naturopath visit and leaky gut) this drug too falls off the face of the earth regarding recent trials. I suspect it is about research money? What else do you know about the drug? Did your doc seem receptive? The site for the drug itself did not have any real side affects listed, I am going to search later when I have more time. Have you been able to locate any. Like the “worms” it seems promising!! I think a pill with no worms would be a little easier to swallow. Thank you so very much for the post, any info you have would be greatly appreciated.
AnonymousFebruary 18, 2010 at 7:47 pm
I had heard of LDN a few years ago, but was too sick to understand the details. LAst month whe I was at my last nuero appt, the Dr memetioned that others in the practice were experiencing some good effects, though I didn’t ask more… there were too many issues on the table. I did email my dr yeaterday, but he didn’t reply. I will see him tomorrow as I am taking my son down for his first IVIG infusion for Common Variable Immunedefiency. Maybe I will get a chance to squeeze in a question or two.
I’m sure I will get a little break and be able to do some more research on side effect. etc over the coming week. Things have been crazy here with my son’s health, my health, finances, and working on legislation to make treting lyme disease safer for Drs in NH.
Let’s just share what we learn and see if this therapy make sense.
AnonymousFebruary 19, 2010 at 12:21 am
I was just reading about this drug, why haven’t we heard more about it. It sounds so promising. I am not going to get too excited about it until I know more aobut it, but it seems to me if it helps so many illnesses then why havent we heard more… just a thought. But I am interested in learning more about it. especially if someone is taking it I want to know if its doing what they say it will do…
February 19, 2010 at 1:24 pm
I found tons of info on it. There is even a forum. A doc who has ms gives it to his patients and himself. It is not something that puts it in remission, but it is easier to deal with than ivig. Essentially, there is a bit of a modulating factor to it, as it produces an increased production of endorphins and the self/non self cells react and those tcell regulators that the worm theory talks about were brought up again. It is a an opiate that is used for heroine addicts. It was approved for that at 50mg dosing. Used in autoimmune issues, it is recommended to start at 1 mg and work up to 4.5 to 5 max. When the drug is started at the max dose of 5mg, that is when side affects are obvious, diahrrea, nausea, etc. Nothing we don’t already have!! The only discouraging thing was as soon as you stop, with in days, the symptoms re-appear. As well, there could be difficulty getting the scrip payed for by ins. as it is off label as was ivig at one time. I think it sounds like a possibility in place of or in conjunction w/vig. There were certain drugs that did interact with it. Imunnosuppressants, any pain killers would have to be stopped and a couple of others.
Between these “worms” and this drug, my printer and brain are burnt out!!
Thanks Erin for bringing this to our attention!! It is in my “new” treatments to consider folder I am bringing to the neuro in April and dropping off to the gastro next week for his review. If it is this drug or the worms, it seems that both can take care of all of our problems, intestinal and neurological!!
February 20, 2010 at 12:29 pm
Check under my posts about visit to naturopath and leaky gut. It is a theory that DOCTORS HAVE DONE STUDIES ON at the Univ of Wisc and Iowa as well as world wide. It has to do with the connection between the gut and autoimmune diseases. In short without being repetitive, if you canheal the gut, these autoimmune issues resolve/remitt. There has been great success with ms patients, crohns, ulcerative colitis and even lupus patients. It deals with eggs of a PIG whip worm being ingeste, they have a life of 2-3 weeks and you take these eggs every three weeks for 6 months. As they die, the die off creates probiotics which heal the gut therefore no longer allowing neuro toxins to escape into the blood. Furthermore and more interesting they also aid in the production of T regulator cells. Those are the very cells necessary to kill of bad cells and not let them into the blood stream (as autoimmune peoples systems do.) Once the t-cell regulator cells work properly, the immune system functions properly. The theory has been proven by docs, gastros and neuros in particular. It seems that the fda did approve the worms as recent as 2008 but have since recinded the approval because there was an incidence of a worm surviving more than the three weeks. They cannot reproduce as they need an environment of cool damp moist soil, certainly not our body. Worst case scenario as Alice so kindly pointed out in her thread de-worm the children we would do a simple de-worming. Apparently you can get the treatment in the us if the particular doc or naturopath meets the qualifications for distribution per the fda and customs. The particular company that distributes them is close to getting them re-approved. Some patients have stayed in remission for as long as 4 years (last info I could find) but on the other hand, those who are more affected did need to re-dose with the worm egg caplets 6 months later. I am still in the investigatory phase, but it does seem that it would be less invasive both physically and mentally than ivig or any other imunosuppresants. The treatment known as helminth therapy or TSO therapy is an immune modulator as is ivig and imunosuppressants. We do not have to stop ivig while doing it and I think I remember that imunosuppressants can be continued until tso is completed. The way I look at it, it is natural, if it goes crazy and survives longer (as do hookworms, people intentionally get those so they do not have to redose and have a 100% success rate for crohns as opposed to 72% with pig whip worms or 54% remission with standard imunotherapy used for crohns) we de worm and go back to ivig or this ldn too could be a consideration. Surprisingly, I have found this therapy being praised on the MS Resources home page/forum. As well, I have found several abstracts singing the praises of the ldn, particularly by a neurologist who himself has ms and uses it on himself and his patients. Bothe therapies have stories of patients going from wheelchairs to walking. Lots to consider. Even if we should not be so lucky to have a series of years without re-ingesting the worms to remain in remission, it seems it might be safer than the side affects that we both know exist in ivig no matter how good it is cleansed and cytoxan or imuron or cell cept or any other imunosuppresants. the ldn does not seem to list any long term side affects except the initial getting used to it, but it is a drug, not natural, so I wonder what affect of over production of endorphins might have long term, alzheimers? other forms of dementia? parkinsons? who knows. I suspect we have not heard much about ldn inreference to your question why haven’t we heard about it because it typically is used for heroine addiction, it is an opiate. They use it at 5omg doses. Apparently Mayop did a trial on it at 25mg for ms and crohns but it had sideaffects that made people drop out of the trial such as extreme insomnia, severe depression (endorphins) and other side affects. It has since been discovered that it needs to be started at 1mg, and worked up to 4.5 at a max to keep any side affects at bay. I think I remember (been reading so many things, everything is blending together!) that you CANNOT take imunosuppressants with this but I would have to refer back to my paper work as it is not near me. I may have posted it on Erins original ldn post. Good luck and have fun reading. Glad to hear Ryan is responding. It must have brought buckets of tears to your eyes and and unbelievable feeling to your heart seeing him out of the wheel chair. I remember that first time after ivig when Kev could walk again. I could never forget that feeling of hope that came over me. Keep us posted.
AnonymousFebruary 26, 2010 at 11:49 am
Although I do not often post here, I do try to read several times per month just to keep up with what is taking place in the lives of so many people whom I feel I almost know, just because of your posts.
It took me 5 months, and 30 doctors to finally arrive at a proper diagnosis.
One of those doctors, who specializes in treatment of long term lyme disease, suggested I try Naltrexone at a 4.5 mg level. I had to get the prescription filled by a local pharmacy (not one of the chains), and took the Naltrexone for approximately 2-1/2 years, from March, 2007 to July, 2009.
I found the drug very easy to take, and experienced no side effects.
The lyme doctor felt, at the time, that the naltrexone would somehow strengthen my immune system. When I stopped the drug, I also stopped cold turkey, without side effects. The drug was provided via prescription, and my insurance plan covered it (it was not very expensive).
I was tentatively diagnosed with CIDP in April, 2007, based on physical examination and nerve conduction tests (which are quite sophisticated and specialized at Hopkins) and when things started to go downhill again in August, 2007, my Johns Hopkins doctor decided that it was time to treat me for the disease. He had no objections to the Naltrexone, but wasn’t sure it would help. The reason it was not treated right away was that my doctor wanted to determine whether I was suffering from a “monophasic” event, or something else. We did not do either a lumbar puncture nor sural nerve biopsy at the time because my condition had been stable for several months, not getting worse, but not getting better. Once we decided to treat, we did do a lumbar puncture, which confirmed very high protein levels, and I declined the sural nerve biopsy.
My treatment consisted of IVIG, starting once every three weeks. Hopkins has a lengthy and detailed protocol for the administration of IVIG (and the kind nurse printed it out for me at my first visit), and I had my treatments at the Hopkins Cancer outpatient department. The only side effects I suffered from the treatments were a headache the first couple of times, and I was usually somewhat tired when I went home. When I reported the headaches, my doctor changed the infusion preparation to add something else (20 ml of decadron), prior to the IVIG, which completely eliminated the headaches.
Although there was no improvement after the 5-day loading period, nor the succeeding treatment 3 weeks later, there was pronounced improvement after the next treatment, and within several more treatments, I had recovered substantially all of my motor strength. After expanding the intervals between treatments to four weeks, and then slowly reducing the amount of IVIG I received at each treatment, we finally stopped the IVIG treatments in July, 2009. I am at 100% for motor strength and about 95-95% with respect to sensory nerves. According to my doctor, the few sensory nerve residuals may or may not completely resolve in time.
I have also taken 2400 mg of Gabapentin, spread throughout the day, as part of my treatment regimen.
I have been back to full weight and cardiovascular workouts since approximately February, 2008, have spent a week skiing with no problems, and have traveled quite extensively since February, 2008, again all with no problems.
I’m not trying to brag on my situation, because every single one of us is very different in how the disease affects us, how we interact with our doctors (my doctor at Hopkins is truly wonderful and one of the leading researchers in this field), how we receive treatment (I always felt things would be much better having the treatments at Hopkins rather than at home, although I was offered a Hopkins Home Service), and how we respond to treatment.
The point I am trying to make is that although there is no proof that the Naltrexone played a role in my recovery, there is also nothing to suggest that it did any harm and may have fact contributed to a good outcome. Based upon my experience, anything that may contribute to a favorable outcome should be considered.
AnonymousMarch 5, 2010 at 11:23 am
Hi, I am new to using forums but do try to read when I have time. My son, now 20, was diagnosed with CIDP when he was 11 years old. Over the course of 3 months, he went from normal to total paralysis and on a ventilator for 10 days. The first treatment was IVIG (twice) with no results, then they tried plasmapherisis again with no results. The last course of action was huge dose of steroids intravenously for 5 days, then he started to improve every day by leaps and bounds and was out of the hospital within a couple of weeks, but on oral Prednisone and then a year later Imuran. Over the last 9 years, we constantly try to reduce the amounts but he has had varying degrees of relapses, as minor as his thumb not working to being in a wheelchair. When that happens we get back on maximum dose of Prednisone (50mg/day) and Imuran (now at 125mg/day) and start all over again. Although he is strong and active and leading a normal life, the drugs are taking their toll and I am always looking for something/anything new out there.
Therefore, we are very interested in the LDN and its use with CIDP. Right now I am just trying to gather as much info as I can before we approach his doctor. He has just been referred to a new ‘adult’ doctor after being with the neurologist at the Children’s Hospital, so we have only seen him twice, and this Dr. says he wants to be more proactive with his treatment but at the same time, he has nothing new to offer other than what we have already tried.
I definitely feel it’s worth a try and my son is game for it as we all know he has to get off the meds. Am looking forward to hearing about others’ progress with LDN.
March 5, 2010 at 3:18 pm
Hi Anderson 4,
I remember reading that you cannot be on imunosuppressants, or types of pain killers. If you find info contrary, could you give me the link? I have tried to find any negative things about the ldn, but am having a hard time. It sounds like a very good possibility!!
AnonymousMarch 8, 2010 at 5:50 pm
I was referred to a Nature Dr who, actually, SPOKE W ME ON THE PHONE! And advied me to “look up low-dose naltrexone”
I’m 3 years into my CIDP Dx, confirmed wLP, Nerve Cond EMG, bu both te local Doc and the capable staff at Hopkins. . .
I’ve been ifused w IvIg, Hi Doses of Prendisone, now on Cell-cept nd am off the Prendisone (yah!)
But I’m at a pretty weak, sickly, plateau- Studies I see show promise, and Isee very little Drug Interaction/side-effect negatives?
DOESANYBODY HAVE “Study” data on this that Icould give my doc and TRY this stuff?
Thanks, Erin, for bringing it up! Funny, we’rethinking alike, here!
March 8, 2010 at 9:12 pm
I printed out info that I found, I will try to find it tomorrow.
Computer skills are limited, so I can give you the link and see if it works, or fax the paper to you tomorrow. If you want me to fax, leave your fax in a pm
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