An Introduction to Low Dose Naltrexone (LDN)
Naltrexone is an FDA-approved medication for heroin and opium addiction. In very small doses, it appears to be remarkably effective in treating HIV/AIDS, certain types of cancer, and a host of autoimmune and neurodegenerative disorders.
In this site, I have written briefly about my husband's experience with LDN and listed many helpful links. Much valuable information was contributed by members of the LDN chat group at
http://tinyurl.com/main-ldn-group
A smaller, friendlier LDN group can be found at
http://tinyurl.com/ldn-users-group
My husband, Paul, started on LDN in November, 2004, a few months after he was diagnosed with multiple sclerosis (MS). Right away, he lost his fatigue; within the first week, he no longer had urinary frequency; and within the first month, he regained his balance and fine motor skills. He is now back to participating in one to two sports a day. He surfs, plays basketball, softball, soccer, and occasionally golf. He still has some numbness and tingling, but it is very manageable.
Paul also suffered from morning depression and nothing worked until, in February, 2005, he started taking DL-Phenylalanine (DLPA). His depression disappeared right away and has not returned.
To relate Paul's story in more detail, when nearing the end of his 48th year, after an unusually stressful month, he went to his doctor complaining of neck pain. After a few weeks of extensive testing and a series of different specialists, we were told he had MS. The news was completely devastating to my husband, as he pictured his life in a wheelchair and being unable to participate in any sporting activities.
Paul's symptoms began appearing in rapid succession. He experienced a strong depression and lacked the feeling of well being; he found that he could not coordinate a cordless screwdriver to put up our new curtains; he had urinary frequency and could not stray far from restrooms; and one day he came home in tears because he could no longer accurately shoot a basketball.
Paul's depression grew despite going to a psychologist, learning to meditate, going through hypnosis, and trying a selection of antidepressants. Every morning I would sit with him in bed and give him a pep talk. I would point out all the people who do just fine with MS and how, in many instances, it can be very slow in progressing.
Although he would try everything suggested to get beyond the depression, he was unable to do so. The worst of Paul's symptoms was extreme fatigue. Every day for two and a half months, Paul would go to work for half a day and come home after lunch. He was too tired to stay at work and too depressed to concentrate on getting anything done while there. Paul began thinking of ending things.
After going through a series of neurologists, our family doctor got us an appointment with a young female neurologist in the area. She was very kind and caring, and took the time to explain everything to us. We felt like we were finally getting somewhere. She explained the four "disease-modifying" CRAB drugs to us and said Paul had a little time before deciding which one would be best for him. That evening, I went on a quest to find out everything I could about these four drugs. Most of the sites I found were hosted by the drug companies themselves and by other organizations that advocated using them.
Over the next few days, I spent countless hours trying to learn what people who actually used these drugs were saying. I finally happened upon a site called Remedyfind.com. It listed many ailments and their treatments. People rated the drugs they tried and were able to write a paragraph about their experiences.
The news was pretty bad for all of the CRAB pharmaceuticals. They required taking shots; had a lot of nasty side effects; were very costly ($800 to $1400 per month); and did not appear to help very many people. When I looked at the overall rating of these drugs, I was stunned to find them at the bottom of the list, with a rating of 4 to 5.5 on a scale of 10.
I looked to see what was in first place, and it was a drug I had never heard of: LDN. This medication was rated at 9.1; was taken by mouth in capsule form; had very minor side effects (which typically disappear within the first month); and cost only about $20 a month. The most amazing thing, however, was the stories of how LDN was giving people their lives back. An added bonus was that a majority of people were experiencing a lack of progression. Their MRI's were coming back with no new lesions and their symptoms were disappearing. I spent the better part of an evening crying as I read through more than 60 stories from LDN users.
I printed out all of the stories so that I could give them to our new neurologist. I was sure this was a no-brainer and she would write Paul a prescription and we would be on our way. But she did not seem interested in looking them over, or in doing any research on this miracle medicine. I could not understand her response, because Naltrexone was approved by the FDA at a much higher dose, 50 mg daily, while, for MS, you only took a maximum of 4.5 mg. Certainly there was no harm in at least trying it.
Although I am not a scientist, I cannot understand how so many MSers could be mistaken about their positive experiences with LDN. I decided we needed to take my husband's health into our own hands. The following week, I made an appointment with Dr. Bernard Bihari, a now retired physician who, building on the work of Dr. Ian Zagon with laboratory animals, pioneered the health benefits of administering LDN to humans. Dr. Bihari said that most neurologists are reluctant to prescribe LDN because it up-regulates (or boosts) the patient's immune system, which, theoretically, might aid it in further attacking the central nervous system. Three out of four CRAB drugs are immunosuppressants (the exception is Copaxone). As it turns out, once the immune system is up-regulated, it begins to function correctly.
The day after my husband took his first dose, he went to work and did not come home until 5 pm. His feeling of well-being returned and, within a week, his urinary frequency was gone. Within a month, Paul could use the cordless screwdriver, and, in the next few months, he was back to doing two sports a day. After nearly two years, my husband has never come home due to fatigue, and his MRI's show no disease progression.
It is important to realize, though, that everyone's body is different and reactions vary. It would appear that over 85% of people taking LDN have a good response, with some type of symptom relief and/or lack of progression. Some people have miraculous recoveries, and some receive only mild help. Unfortunately, there is a small percentage of people who either do not seem to benefit from LDN at all, or the benefit is only temporary (as in Parkinson's disease). Not everyone reacts as quickly as my husband. But once in a while, I hear of people who get out of wheelchairs, have their vision restored, and regain their cognitive skills.
I believe that neurologists who truly care about the health and well-being of their MS patients should first try LDN, and then switch to the CRAB drugs if LDN proves to be ineffective.
The optimal dosage of LDN for the average adult is 4.5 mg taken between 9 pm and 3 am. To control for changes between Daylight Savings and Standard Time, some recommend taking LDN between 10 pm and 2 am.
In cases of MS, because LDN may cause an initial transient increase in symptoms (especially spasticity), it is recommended that people take 1.5 mg the first month, 3 mg the next month, and 4.5 mg thereafter. For that reason, the original prescription should be for capsules of 1.5 mg.
To those that do not react well to LDN at the beginning: check the type of filler your pharmacy is using (only quick-release fillers should be used) and make sure you are obtaining your LDN from a reliable compounding pharmacy.
LDN is typically compounded in a capsule with fillers (e.g., lactose). However, because some people experience filler-related problems, it can also be prepared in liquid form to be taken orally.
Be sure you do not have Lyme disease--it can mimic MS symptoms. If you do have Lyme disease, click here for methods of treating it.
Check to see if you have an overgrowth of Candida, a type of yeast that can cause many health problems. Click here for information about Candida and methods of treating it. People often do well on LDN once they have Candida under control, as Dr. Jaquelyn McCandless has found in treating children with autism.
Dr. McCandless also discovered that, for best results in using LDN, one should avoid sugar, dairy, soy, and gluten (found in wheat, barley, rye, and oats). The Best Bet Diet (BBD) for multiple sclerosis follows a similar protocol. You can find many recipes that do not employ sugar, dairy, soy, or gluten by visiting this site:
http://tinyurl.com/bbd-recipes
Although the following site refers to people with MS, you can find great dietary advice at
http://tinyurl.com/advice-to-msers
Dr. Bihari recommended the supplement known as DL-Phenylalanine (DLPA) to enhance the effectiveness of LDN. The suggested dose is 500 mg twice a day between meals. There are, however, a number of precautions involved in using DLPA. To learn more, visit
http://tinyurl.com/34enev
We suggest keeping a journal of symptoms and reactions so you can record your LDN experience.
LINKS
The official LDN website:
http://www.ldninfo.org
Diseases helped by LDN:
http://tinyurl.com/ldn-treatable-diseases
Drugs to avoid when taking LDN:
http://tinyurl.com/drugs-to-avoid-on-ldn
Side effects and dosing of LDN:
http://tinyurl.com/ldn-side-effects
How to obtain LDN:
http://tinyurl.com/how-to-obtain-ldn
LDN-related research:
http://tinyurl.com/ldn-trials
LDN-related case studies:
http://tinyurl.com/ldn-cases
Why the silence about LDN:
http://tinyurl.com/the-silence-about-ldn
Dawn's Hashimoto's blog:
http://tinyurl.com/4wszdl
An LDN chat group for MS:
http://groups.yahoo.com/group/spotlight_ldn
The 1st U.S. LDN Conference:
http://tinyurl.com/28e6be
The 2nd U.S. LDN Conference:
http://tinyurl.com/second-ldn-conf
The 1st European LDN Conference:
http://tinyurl.com/euro-ldn-conf-1
Dr. Lawrence's advice on LDN and MS:
http://tinyurl.com/2ejrdj
LDN for FMS:
http://tinyurl.com/ldn-for-fms
A charity for LDN research:
http://www.ldnresearchtrust.org
An LDN advocate's testimony:
http://tinyurl.com/why-ldn-advocate
LDN for Alzheimer's:
http://tinyurl.com/ldn-for-alzheimers
Crystal's MS, TM, and LDN site:
http://tinyurl.com/c8pgyp
LDN for cancer:
http://tinyurl.com/ldn-for-cancer
Bill's LDN and MS site:
http://tinyurl.com/2b3zvt
LDN for Crohn's:
http://tinyurl.com/ldn-for-crohns
Dr. Berkson on ALA and LDN:
http://tinyurl.com/berkson-on-ala-and-ldn
LDN for HIV/AIDS:
http://tinyurl.com/ldn-for-hiv-aids
An interview with Dr. Lenz:
http://tinyurl.com/2tnn8y
LDN for rheumatoid arthritis:
http://http://tinyurl.com/ldn-for-ra
LDN fax service:
http://tinyurl.com/ldn-fax-service
LDN for self-injury:
http://tinyurl.com/ldn-for-self-injury
LDN-related articles:
http://tinyurl.com/2wp8jl
LDN-related video clips:
http://tinyurl.com/mercola-on-ldn
http://tinyurl.com/9ean44
http://tinyurl.com/239dng
http://tinyurl.com/2mbzqj
http://tinyurl.com/2o4rlk
http://tinyurl.com/4gwl6l
LDN-related books:
http://tinyurl.com/bk9m8c
http://tinyurl.com/oz9wdg
http://tinyurl.com/mk9c58
http://tinyurl.com/ynkm4n
http://tinyurl.com/34fxet
http://tinyurl.com/43l6x2
http://tinyurl.com/46ut4v
http://tinyurl.com/6ouxyy
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