Sunday, May 31, 2009

LDN: Parkinson's Disease Treatment or What?

Is Naltrexone a Viable Treatment for Parkinsons Symptoms?

It's been around for more than 20 years. It's always been controversial. It's had a few clinical trials, now it's getting more. Some say it works, some say it does nothing. A lot of people view it as another form of snake oil. But there is a community that believes it can help MS, ALS, Parkinsons, Alzheimers, Cancer, HIV/Aids, Celiac Disease, Crohns disease, Fibromyalgia, IBS and several other diseases. Warning signals go off in my head when a drug claims it can cure or slow so many serious things. But I'll ignore them and take a look at what's being claimed.

Here's how it is thought to work: Naltrexone is an opioid blocker, it blocks all the brain's opioid receptors and it was approved by the FDA to treat recovering addicts. The low dose version triples the body's production of endorphins which gets the immune system into full operation. The drug doesn't fight the diseases directly, the body fights the diseases after the immune system is back to normalcy.

Naltrexone is generic so no drug company will pay the millions needed to go through the off-label process with the FDA or the EU drug agency because there's no profit in doing so.

Another problem is that the drug comes in a 50mg capsule for the use of the addicts. Other human diseases would mainly use doses of 1.75 to 4.50 mg per day ("low dose" or LDN). To get capsules with the necessary dose size the patient wishing to use this drug needs to find a compounding pharmacy that is experienced with LDN. I think that some of the problems that off-label patients have had with the drug may have been inaccurate dose size from the compounding pharmacy. It is available in liquid form which must be kept refrigerated. If using the solution, you need to stipulate that you do not want the slow-release (SR) form. Remember also that you will need to titrate up to a dose effective for you. We've read of some MS patients only stop at 2.8mg and do not go all the way to 4.5mg.

It is important to take it between 11:00pm and 3:00am because the body makes endorphins in the last few hours before sunrise. Naltrexone is an opioid blocker-opiate antagonist; it makes the brain think it has a deficit of endorphins. So to compensate the body makes 2 to 3 times the normal amount of endorphins. The endorphins function restore the immune system to full operation. Some LDN users also add chlorella to their regimen for additional support.

Purely anectdotal evidence exists showing LDN reducing symptoms in MS patients and to a lesser extent in Parkinson's. At a site listed below the following improvements were noted: sense of well-being; no more depression; improved sleep; episodes of delusion/paranoia stopped; ease of muscle tension followed by restored normal breathing pattern; lowered doses of PD meds; improved cognition; restoration of balance; no more night sweats; no drooling; smile returned; lack of side-effects.  (1/2011 update) A recent anecdotal report indicates that tremor reduction after 6 days of use. It is  too early to determine if this is due to the effects of LDN or placebo effect.

So how do you obtain LDN? You print out some information and you discuss it with your doctor...who might mention the connection between T-cells and decreased dopamine but not that LDN might adjust the glial process...Which we will be discussing in the future.

Clinical trial results:
http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://www.lowdosenaltrexone.org/ldn_trials.htm

Parkinsonian symptom abstract
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T0C-4FTS37F-5&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=50ee2ac9fb3795a3bb2c046b749e83ad

An interesting news item
http://www.mailtribune.com/apps/pbcs.dll/article?AID=/20080310/NEWS/803100308/-1/LIFE

You might find these interesting:
http://www.revolutionhealth.com/drugs-treatments/rating/naltrexone-for-parkinsons-disease http://www.digitalnaturopath.com/treat/T74481.html

Specifics about Low Dose Naltrexone
Check this site for LDN information  

Our next two posts in this series:
Although the Parkinson's LDN database at LDN World Database is small, it will provide some helpful information.  If you are using LDN for PD or know someone who is, it would be a great idea to make your addition to the database. They have a much longer MS database and a list (database) of pharmacists as well.

Addendum 3/29/11
Many patients are also taking Alpha Lipoic Acid as a supplement when they take LDN. Watch for R-ALA which is the positive form.
Researchers are now looking at natlrexone to treat the inpulse-control side effects of PD meds. We are wondering if those who take Mirapex and Selegiline or other dopamine agonists or MAOIs would be able to continue to have the benefits of those medications without the problems which many PwPs have experienced.

see: Naltrexone for Impulse Control Disorders in Parkinson's disease.

Addendum 6/27/11
Because we think this is very important, we just want to remind anyone taking LDN to always have a bracelet/dogtag/pendant/wallet card indicating that you are taking Low Dose Naltrexone.
In the event of a bad fall or other injury, you don't want to be given narcotic/opiate painkillers or you will have pain far worse than the pain you are already experiencing.
It has been suggested that this tag indicate Naltrexone at the very least as some people may not be familiar with LDN.

8 comments:

  1. Appreciate your balanced article.

    One thing--it appears that the dosing timing information may be outdated. http://glasgowldn2009.com/category/diary/

    ReplyDelete
  2. Thank you for sending that wonderful link. We have written an update to the update as a result of your comment.

    ReplyDelete
  3. this is a question to the parkinsons people.
    Those who take mirapex for treatment,that would be just about everyone.
    i am interested in the maximum daily dose that
    your doctor prescribed for you.
    thanks,

    ReplyDelete
  4. An above question about LDN dosage was reposted by us because there was a signature in the question while the selected name was anonymous.
    We honor that anonymous status by reposting the question without a name unless we are advised to the contrary.

    To Rena, please be advised that we cannot provide a dosage instruction for LDN. Moreover, we were simply reporting about the status and not speaking from personal experience.
    I believe the information you are looking for is in the 6/19/2009 article Low Dose Naltrexone and Parkinson's Disease Part III - Dosage and Timing Updates.
    Thank you for visiting and we hope this helps.
    You may contact us directly through the CONTACT US links throughout Parkinson's Focus Today.

    ReplyDelete
  5. Diagnosed with PD at 30, it's been four years now and I would like to try LDN. What compelling info would be good to bring to my neuro?

    Thanks for your article.

    ReplyDelete
  6. You might consider listing your symptoms and their frequency. Next to each indicate how they disrupt your lifestyle.

    The next thing I would suggest is a list of every medication and supplement you are currently taking - sometimes there are meds you might get from one doctor which won't appear on the you records with another. It is important that you are not on anything resembling an opiod.

    We have already listed the anectdotal reports of the benefits PwPs have found with LDN so you might present the entire list with your hopes circled:
    1) sense of well-being;
    2) no more depression
    3) improved sleep
    4) episodes of delusion/paranoia stopped
    5) ease of muscle tension followed
    6) by restored normal breathing pattern
    7) lowered doses of PD meds
    8) improved cognition
    9) restoration of balance
    10) no more night sweats
    11) no drooling -
    there are other swallowing issues related
    to drooling - if you have them, list them
    There is a relation to speaking voice also.
    12) smile returned
    13) lack of side-effects

    You can always print these articles and any of the links provided within them as part of your argument.

    We'd love to hear how you do if you try LDN.

    ReplyDelete
  7. Hello
    My father is 86yrs of age and started taking LDN on April 18, 2011.
    Can anyone tell me how long after you started taking LDN that you noticed improvement/change/benefits?

    Regards
    John (Australia)

    ReplyDelete
  8. Hi John, everyone is different, depends on the illness and how long you have suffered and body type/size, too many varibles. My research has been over a year, and I have read some feel it in one day, some feel it in months, you have to make sure you are getting it from a rep pharmacy to ensure you are acutally using Naltrexone in the low dose form. The ones who feel it right a way I FEEL its from the added endorphins, I was one who felt it pretty fast and I only started at 1.0 went up to 3.0 in 3 months. I had a few side effects, some tummy issues but I have IBS too, and the added endorphins help digestion and yeah I felt it. NOW MY IBS IS almost totally under control, food and stress, I take less of my ativan since Im in a better mood, i.e. added endorphins there too, I believe some of us have endorphin deficiency syndrome, I looked it up since had mood change for the better and my knee pain was helped big time in 5 days, I LOVE MY LDN and anyone wanting to use it PLEASE research it every day until you feel its for you.. no one can tell you its for you.. its a great treatment for my fibro/cfs/IBS/arthritis in my knees.. GOOD LUCK!!

    ReplyDelete

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