This is topic Low dose naltrexone study at Stanford--anyone tried it? in forum Medical Questions at LymeNet Flash.


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Posted by CD57 (Member # 11749) on :
 
I read about it in Dr Singleton's book. Now they are doing a study at Stanford for use in Gulf War Syndrome (isn't that mycoplasma)? Notice the symptoms:

Fatigue, Headache, Memory Problems, Gastrointestinal problems, Muscle/joint pain, Shortness of breath, Sleep disturbances

Low Dose Naltrexone for the Treatment of Gulf War Illness


LOW DOSE NALTREXONE FOR THE TREATMENT OF GULF WAR ILLNESS
A study conducted at Stanford University School of Medicine

We are conducting a small research study that tests the effectiveness of low dose naltrexone in treating symptoms of Gulf War Syndrome. Participation lasts 22 weeks. Visits to the Stanford Pain laboratory occur every two weeks, for a total of 12 visits. You will be compensated $360 for your time. All tests and treatments involved with the study are provided at no cost.

Requirements for participation in the study:

* Must have been deployed to the Persian Gulf during the 1991 Gulf War.
* Must be between the ages of 33 and 55.
* Must have chronic, ongoing problems with any of the following symptoms:
Fatigue, Headache, Memory Problems, Gastrointestinal problems, Muscle/joint pain, Shortness of breath, Sleep disturbances
* Symptoms must have begun during or soon after deployment to the Persian Gulf.

Visit http://snapl.stanford.edu/gwi for more information and to complete a secure, online screening questionnaire. Or call (650)724-0522.

This study is run by the Medical School of Stanford University and is not affiliated with the VA system. The study is being conducted by Drs. Jarred Younger, PhD, and Sean Mackey, MD, PhD. Funding for the study is provided by a private donor.
 
Posted by Nutmeg (Member # 7250) on :
 
Hi CD57,

These same Stanford researchers are also doing a study using low dose naltrexone in fibromyalgia. The same set of symptoms are given.

I came across this information while googling about LDN the other day. If I was near Stanford, I would try to get on the fibromyalgia study.

Some other Lymenetters are doing LDN, because there are some posts in the archives about LDN.

I'm hoping to get my Lyme-friendly MD to prescribe it for me soon. I've really hoping the LDN brings me some relief while I continue to work on the cause.

I'm pretty certain I have fibromyalgia with Lyme and co-infections on top of that. It's gotten to the point where I need some serious help with symptoms--muscle pain and weakness, joint pain, unrefreshing sleep, brain fog, and more.

Are you thinking of trying LDN, or are you going to try to enroll in the study? I wasn't sure which you meant in your post.

Take care,
Nutmeg
 
Posted by CD57 (Member # 11749) on :
 
I live in Stanford's backyard, almost. So I thought it would be worth it to maybe try this. I don't think I want to be in on a study though....don't know much about LDN and we don't hear about it here much...wouldn't we hear about it if it worked?
 
Posted by kissis (Member # 4165) on :
 
I have been taking it for almost 3 years, I have been diagnosed with M.S./Lyme. LDN is a popular drug for treatment of M.S. with some great results reported.
It regulates the immune system.
I feel like I have not gone done hill and notice more strenth from it.
 
Posted by Lymeorsomething (Member # 16359) on :
 
It would be nice to hear more about it. Singleton says that it's relatively side-effect free so it may be something that is worth a shot.

Is it purportedly effective against fatigue issues?
 
Posted by viva (Member # 8183) on :
 
Hi CD,

My husband has been taking LDN for at least a few months. It was actually first suggested by his old LLMD, Dr. C., as an immune system booster and possible anti-cancer properties (after husband's colon cancer diagnosis).

Current LLMD has not had objections to continuimg it. We currently get it from Wellness Pharmacy (it's compounded, since it's a much lower dose than what's usually used for addictions).

To be honest, I haven't seen any visible effects for my husband. I see it as one of those "can't hurt, might help" things, especially with paranoia about a cancer recurrence.

Viva

[ 17. January 2009, 11:34 PM: Message edited by: viva ]
 
Posted by nomoremuscles (Member # 9560) on :
 
It got me out of bed.

Most of 2007 I was stuck in bed because my muscles were so weak. I started LDN toward the end of that year, September or November, and right away I felt a bit better. Yet, at the same time I had a huge symptom escalation that was very intense.

I started at 1.5 mg for MS-like symptoms, and stayed at that dose for two or so weeks. Then I upped it to 3 mg. Another symptom escalation. I stayed at this dose for two-three weeks, then upped it to 4.5 mg., the standard dose. And I got walloped again.

Yet even through the terrible herxes I could feel something good going on, for the first time in many years. For anyone who is "autoimmune" or very reactive to foods or chemicals LDN may be something to look in to.
 
Posted by MariaA (Member # 9128) on :
 
getting on it seems to coincide with my incessant yeast infections going away.
 
Posted by Robin123 (Member # 9197) on :
 
Check out the info at www.lowdosenaltrexone.org There's also an active yahoo group, if you go to yahoo, click on groups and do a search for lowdosenaltrexone. From what I understand, some Lyme patients are helped by it and some aren't. You have to try it and see.
 


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