LDN – a patient’s account.

Dear Dr. Brad, 

About Low Dose Naltrexone (LDN) for the treatment of auto-immune diseases

 

                        Below I have written a little about my husband’s experience with the use of LDN and multiple sclerosis and

                        have listed many helpful links regarding LDN,  including one

                        that helps you to explain to your doctor about LDN.    

 

            My husband, Paul, started on LDN back in November of 2004.  Right away he lost his fatigue. Within the first week he no longer had bladder frequency and within the month he regained his balance and fine motor skills.  He is now back to playing one to two sports a day.  He surfs, plays basket ball, softball, soccer and occasionally golf’s.  He still has some numbness and tingling, but it is very manageable. 

 

            Paul had also suffered from morning depression and nothing had worked until Dr Bihari told him to start taking DL-Phenylalanine (DLPA) in February of 2005.  His depression disappeared right away and has not returned. 

 

            The biggest thing to realize is that everyone’s body is different and reactions vary.  It would appear that over 85% of people taking LDN have a good response, with most experiencing a lack of further progression and many noting some type of symptom relief. Some people have miraculous recoveries and some only mild help. And there is a small percentage of people that it does not seem to help. 

 

            A few things are for certain: there are far fewer side effects (and they usually go away within the first few weeks), it is much easier to take and it is much cheaper than the standard C.R.A.B. pharmaceuticals prescribed for Multiple Sclerosis (MS). 

 

LDN dosage:

1) Adults should begin with the optimum dosage of 4.5mg* each night at bedtime (between 9pm to 3am) – unless it is someone with MS who has been troubled by muscle spasms, in which case one should start at 3mg and probably stay there.
2) In the unlikely event of distressing side effects that last longer than a week or ten days after beginning LDN, one should then cut back on dosage to 3mg or less as needed.
*Please see “Cautionary warnings” on the website’s home page (www.ldninfo.org) before starting use of LDN.

             

            A few trouble shooting items that we have noted on the chat site for those that do not react well to LDN at the beginning are as follows:  Check the type of filler you are using and make sure you are getting your LDN from a reliable compounding pharmacist (only use quick release fillers). A number of LDN-experienced, compounding pharmacies are listed on the www.ldninfo.org website.  LDN can be compounded in an oral capsule with fillers, in a liquid preparation taken orally or as a transdermal cream. 

 

            Make sure that you do not have Lyme’s Disease as it can mimic M.S. symptoms.  Check to see if you have Candida, a yeast infection.  Many people do well on LDN once they have rid themselves of Candida as Jaquelyn McCandless, MD has found in treating people with Autism.   

 

            We strongly recommend keeping a weekly journal of symptoms and reactions so that you can record your LDN experience.

 

For more information on Low Dose Naltrexone (LDN), please see the links below:

 

The official web site that describes what LDN is all about.

http://www.lowdosenaltrexone.org/

 

Subscribe to the official LDN Yahoo group to learn about taking LDN for a number of health issues. http://health.groups.yahoo.com/group/lowdosenaltrexone/

 

The ‘Case Health’ website, based in Australia, collects and shares health success stories – search the database for LDN

http://www.casehealth.com.au/case/about.html

 

The Proceedings of the 2nd LDN Conference held at the National Institutes of Health in the USA in 2006 are available on DVD for only $10.00 . This was a medical conference with doctors from around the world presenting their findings on the effectiveness of LDN. http://www.skipspharmacy.com

 

Dr. Laurence’s web site. He is a doctor in England that uses LDN for his own MS, and he has been giving NDN to his patients for a number of years with good success. http://www.msrc.co.uk/

 

SammieJo’s web site and her time line:  http://www.ldners.org/mission.htm and http://www.ldners.org/SJW_LDN.pdf#search=’LDN%20MS’

 

Mary Bradley wrote a book, Up the Creek with a Paddle, regarding her husband’s experience with LDN and MS, and her uncle’s experience with LDN and Parkinson’s disease.  http://www.marybradleybooks.com 

 

Go to these sites to find an alternative way to get LDN and how to prepare it (goodshape site).  However, we always recommend going through a doctor if possible.

The Compounder Pharmacy site has stories from others that take LDN.  http://www.thecompounder.com/ldntestimonials.html

 

Contact Dr Skip Lenz for information about best fillers and methods for compounding LDN http://www.skipspharmacy.com

 

The LDN Research Trust site from England is trying to get research done, they have additional information. http://www.ldnresearchtrust.org

 

Maureen has put together documents that help explain LDN and suggests how to talk to your doctor about LDN. http://www.mwt.net/~drbrewer/lownaltrex.htm

http://www.gazorpa.com/

 

Brenda’s LDN forum and Information center  http://ldn.proboards3.com/index.cgi

 

Good LDN Site for info: http://www.larrygc.com/ms

 

Crystal‘s web site concerning Multiple Sclerosis and Transverse Myelitis angelindisguise67@yahoo.com

 

For Autism: Dr McCandless had run research on LDN’s benefit for people on the Autistic Spectrum of Disorders.  There are many chat sites one can join that discuss Autism and LDN.  One such site is http://health.groups.yahoo.com/group/Autism_LDN/

 

For Crohn’s chat site and for LDN trial info:  http://www.healingwell.com/community/default.aspx?m=1086289&f=17&p=2

One common reason that LDN does not seem work for MS is a mis-diagnosis and someone ends up having Lyme’s Disease instead of Multiple Sclerosis

www.lymebook.com

 

Newspaper and TV News stories:

 

News station article on Crohn’s http://www.wistv.com/Global/story.asp?S=7281968&nav=menu36_3  Be sure to Click on the little red camera 2 inches down on the left side.

 

Jacksonville news article real http://www.youtube.com/watch?v=Kz52KK5IhOc 

Print version of the story presented on TV in Jacksonville FL, appears to be from 2/8
http://www.cbs47.com/content/topstories/story.aspx?content_id=D4FA2E03-2470-4AF2-B58C-1CB1B4A2ED6A&gsa=true

Brenda’s Newspaper article in Arkansas  http://www.cwarkansas.com/news/local/story.aspx?content_id=2f9e176a-b205-4155-85cc-5b8170940649

News Paper article in California (Vicki)  http://www.auburnjournal.com/articles/2006/05/01/news/top_stories/04relief01.txt?pg=1

Bill Roberts article in Alabama http://www.dailyhome.com/news/2006/dh-sylacauga-0913-dsinclair-6i12v2419.htm

Dr. Skip (from Skips Pharmacy) did a radio interview  http://wor710.com/pages/48794.php
Look for Health Talk with Dr. Ronald Hoffman, the interview with Dr. Skip Lenz, 8/22

Cris Kerr, on LDN for Help for MS  http://www.news-medical.net/?id=14749

Some news in the UK on the LDN front  http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2008/01/28/hms128.xml

Paul Nicohlas vidio regarding LDN   http://www.skipspharmacy.com/vid/PaulNocohlasXmas.mov

Article by Drs. Ronald Hoffman and Skip Lenz on the efficacy of Low Dose Naltrexone in the treatment of multiple sclerosis. It appeared recently in the Journal of the United Spinal Association   http://tinyurl.com/2wp8jl

Cancer articles: http://www.palmbeachpost.com/health/content/accent/epaper/2008/02/07/a5e_bone_col_0207.html

http://www.ldn4cancer.com/myldnstory.html

News Paper article in Norway: http://www.dagbladet.no/dinside/2007/09/28/513511.html

Article regarding Scotish doctor raising money to fund LDN trial. http://www.theherald.co.uk/display.var.1494742.0.0.php                                            http://www.news-medical.net/?id=14749

LDN conference video clips:

Dr. Lawrence from England  http://www.youtube.com/watch?v=zNcdevk8wuE

Dr. Phil Boyle from Ireland  http://www.youtube.com/watch?v=1sZGQqYTVBg

Dr. David Gluck from New York  http://www.youtube.com/watch?v=MZRfH6ewuSE

Interview of Crystal on LDN for MS http://www.skipspharmacy.com/vid/crystelinterview.mov

Let us all know how it goes,   Aletha   March 2008  aletha@redshift.com

 

Paul’s MS story

 

            When nearing the end of my husband’s 48th year we had decided to purchase a rental property in a rapidly growing community in Florida.  We worked for months doing research and finding a good propert manager.  Then there was the hard work of finding the right property and securing a loan.  The most difficult part of our venture was doing this all from California and not being able to see the home in person.  

 

            Once we found a house that met our criteria and had the loan papers underway we booked a vacation for the family and flew to Cancun.  From the resort we checked our e-mail and the house had closed escrow one morning. The next morning the internet reported that Hurricane Charlie had hit the coast of Florida.

 

            When back home in California, my husband worried for the entire month of September while the Sunshine

State was ravaged by four consecutive hurricanes.  He worked at a weather center where the days were filled with the topic of the hurricanes.  Then he would come home and check the internet and spend the evening watching CNN.  At the end of the month our new house was fine, but my husband was not.

 

            Paul went to his doctor complaining of neck pain and, within a few weeks of extensive testing and a series of different specialists, we were told he had what appeared to be Multiple Sclerosis.  The news was completely devastating to my husband as he pictured his life in a wheelchair and being unable to surf, play basketball, and play tennis. 

 

            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 screw driver to put up our new curtains; he had bladder frequency and could not stray far from restrooms; and one day he came home in tears because he could no longer shoot and make a basket. 

 

            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 of the people that do just fine with MS and how it can be very slow in progressing for some people. 

 

            Although he would try everything suggested to him to get beyond the empty spiral of extreme depression he was not getting out.   The worst of Paul’s symptoms was extreme fatigue. Everyday for two and a half months Paul would go to work for half a day and come home after lunch break.  He was too tired to stay at work and too depressed to concentrate on getting anything done while he was there.  Paul began thinking of how to end it all. 

 

            After going through a series of neurologists, our family doctor got us an appointment with a young neurologist in the area.  She was very kind and caring. She took the time to explain   everything to us.  We felt like we were finally getting somewhere.  She explained the four C.R.A.B. drugs to us and told us that 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 that I found were from the drug companies themselves and from other organizations that advocated using them. 

 

             Over the next few days I spent countless hours trying to find out what people who were actually using these drugs had experienced.  I finally happened upon a site called Remedyfind.com which lists many ailments and their treatments.  People themselves rate the drugs they have tried and they are able to write a paragraph about their experiences.  

 

            The news was pretty bad for all of the CRAB pharmaceuticals. They required taking shots, having 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 up to see what was in the number one place and it was a drug I had not heard of.  It was called LDN and it was rating at 9.1.  I quickly read that this drug was taken in a pill form, it had very minor side effects that typically disappear within the first month, and the drug only cost approximately $20/month.  The most amazing thing however were the stories of how people were getting their lives back.  An added bonus is 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 doing further research on this miracle medicine.  I could not understand because it was FDA approved at a much higher dosage of 50mg, while you only took 3 to 4.5mg for MS.  Certainly there was no danger in trying it. 

 

            While I concede that I am not a scientist, I could not understand how this many people could be wrong.  I decided we needed to take my husband’s health into our own hands.  The following week I made an appointment with the doctor in New York who originally thought through the idea of administering this drug in a low dosage for people with autoimmune disorders.  From what I understand, many neurologists are concerned about giving LDN a try because it most likely strengthens the patient’s immune system, which they are concerned might then result in its further hurting and attacking the body.  Three out of the four CRAB drugs are described as immune modulators (or some say immunosuppressants). But as it turns out, once the immune system is upregulated, it appears to get into gear and remembers how to behave so as not to attach one’s own body tissues.  

 

            The day after my husband took his first dosage he went to work and did not come home until 5pm.  His feeling of well being returned and within a week his bladder frequency was gone.  Within a month Paul could use the cordless screwdriver and he was back to 2 sports a day in the next few months.  After three years my husband has never come home due to fatigue and his MRI’s show no new progression.  The only symptom that Paul has is minor numbness and tingling in his hands. 

 

            What I have learned from being on the Yahoo LDN chat site is that about 85% of people with various auto-immune diseases have lack of progression and/or some form of symptom relief.  Not everyone reacts as quickly as my husband and not everyone has miraculous recoveries.  But once in a while I hear of people that get out of wheel chairs, get their vision restored, gain their cognitive skills back or feel like they no longer have the dreaded Monster.  I believe that neurologists that truly care about the health and well being of their MS patients should first try LDN and move onto the CRAB drugs only if LDN is not effective for them.         

 

            Aletha   March 2008  

 

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