The Naltrexone story is a powerful story that must be told and shared

Dr Bernard Bihari (USA), a long advocate and prescriber of Naltrexone has alleviated the symptoms and/or progression of MS sufferers by prescribing Low Doses of Naltrexone (LDN). His groundbreaking work, commenced in the mid 1980s, has resulted in a small but growing number of physicians prescribing Naltrexone to minimize both progression and symptoms of MS for their patients.

MS is not the only disease Dr Bihari has treated successfully with low doses of Naltrexone. LDN is cited as beneficial across a broad range of chronic diseases such as HIV/AIDS, lupus, Parkinson’s, Crohn’s disease, breast and other cancers, and even fibromyalgia. If you’re wondering how these diseases are linked look no further than an errant immune system.

Due to the wonder that is the Internet, word is spreading. A maiden conference dedicated to LDN was held in New York earlier this year, with a second planned for 2006.

MS sufferers whose symptoms or progression have been alleviated by treatment with LDN have formed support groups and are dedicated to spreading the word. They’re striving to help fellow MS sufferers via information-sharing, emotional support, and fund-raising for clinical trials.

Why are Clinical Trials important?

At this time Naltrexone is only ‘officially’ approved as a treatment for alcohol or drug dependence, at doses much higher (around 50 mg) than the very low doses (up to 4.5 mg) prescribed for the management of MS or other diseases.

Naltrexone has not achieved mainstream acceptance as a treatment option for MS due to absence of clinical trial data. Whilst a handful of doctors will prescribe LDN for MS (if pressed), most are too cautious to prescribe a treatment they perceive as unproven clinically.

Clinical trials answer the ‘who, what, why, where, how, and when’ questions that must be answered to establish patient profile, efficacy, optimum dose, safety, etc. Clinical trials establish evidence of successful, safe outcomes or unsuccessful, unsafe outcomes. Doctors therefore, quite rightly, base treatment decisions on clinical trials because this is the safest system to follow, and patients wouldn’t want it any other way.

But, where does that leave the promise of Naltrexone?

Health success stories written by patients and attributed to LDN are growing exponentially.

A large body of stories from MS sufferers who’ve improved or halted progression of their disease after taking LDN are building a compelling case, but these stories represent only one facet of evidence. Health success stories alone don’t provide sufficient evidence for most doctors to prescribe LDN.

A large body of health success stories does, however; provide sufficient evidence to advocate a clinical trial.

Clinical trials cost money and are typically initiated or sponsored by those who expect to recoup the cost outlaid for the trial by commercializing its successful results. That’s business and that’s how it should be. If an organisation is prepared to fund the very high cost of research, development, and clinical trials then they’re entitled to view the costs as an investment that will turn a profit.

Naltrexone has long passed its patent protection period. Drugs outside of patent protection are classed as ‘generic’ or ‘orphan’ drugs because they no longer have a sponsor. A clinical trial therefore, does not present an attractive commercial proposition for those sponsoring organisations that have traditionally initiated clinical trials - because they wouldn’t gain exclusive rights (and subsequent profits) from a successful outcome.


What’s wrong with this ‘system’?

The driving force behind Research, Development, and Clinical Trials is commercial. There’s no big profit to be made from a clinical trial of a ‘generic’ or ‘orphan’ drug such as Naltrexone regardless of the promise it holds, so nothing happens.


How did we discover Naltrexone holds such promise?

Via his practice Dr Bernard Bihari has been trialling Naltrexone since the mid 80s, resulting in a growing body of health success stories linked to low doses of Naltrexone.

Testimonials appear on core LDN supporter sites: In the USA, Dr David Gluck, a childhood friend of Dr Bihari and LDN advocate, manages the website www.lowdosenaltrexone.org  and its sub-site www.ldninfo.org  with the help of his son. An LDN for MS Research Fund, sponsored by the Accelerated Cure Project for MS and initiated by four individuals with a keen interest in LDN is publicised on this site. You'll also find the Foundation for Integrative Research; now known as the Foundation For Immunologic Research (FFIR); founded in 1989 by Bernard Bihari, MD and two colleagues to raise trial funds for the broader range of LDN's promising applications.

In the UK, LDN Research Trust was founded by Linda Elsegood, herself an MS sufferer who takes LDN. Linda’s monthly newsletter contains LDN testimonials. The patients who’ve been helped by LDN are doing what they can to raise awareness and funds for clinical trials … the hard way.

You can’t help but be impressed when you see MS sufferers raising funds and contributing to support groups in the interest of helping other MS sufferers.


Those that could be helped are not being helped

Whilst there's growing anecdotal evidence that LDN could be the most effective and economic treatment option in the management of MS (for both the patient and the health system), the absence of clinical trial data means the majority of practitioners are still not prescribing Naltrexone. Those that could be helped are not being helped.


What‘s Disturbing about this Picture of Health?

When you read LDN stories on my site or others I’ve mentioned here; the first thing you’ll notice is a consistent thread of optimism running through this ever-growing body of health successes:

‘ … I have been on LDN for a little over 7 months now and it has given me a lot of my life back. For the first time in many years, the progression of disability has stopped. … ‘

‘ … I have had NO new symptoms and NO further progression since starting LDN six years ago. I still drive and do all my own shopping, cleaning, etc. I feel certain, had I not been on LDN, I would not be as active as I am, nor as mobile. I wish every MSer had the chance to try LDN to see if they are one of the ones who would benefit. … ‘

When you read LDN stories, the second thing you’ll notice is the extraordinary lengths MS sufferers are forced to go to try Naltrexone. MS is a debilitating condition with multiple adverse symptoms. People with MS are already suffering. You can’t help becoming indignant at the injustice:

‘ … I phoned the neuro … to see if she would give me the Low Dose Naltrexone (LDN) treatment. She had never heard about it … she was so excited about this … she had to clear it with the legal dept … A week later she phoned to tell me the lawyers said no! … My health was being decided by a group of lawyers!! … September 4, 2005: I am happy to report a small but significant improvement. Last night for the first time in years I was able to lift my left foot and take a couple of heal to toe steps... instead of dragging my foot or walking toe to heal. ... ‘


Where’s the official body that acts on behalf of patients?

Research, drug development, and clinical trials are commercially-driven by sponsors. That’s okay, but there’s no recognized body that can officially step up to the plate to speak and act on behalf of patients.

I know this because I’ve tried, without success, to find an authority that is sanctioned to do so.


The present system is unjust

The present system is unjust. It’s inequitable. It doesn’t place sufficient value on patient health success stories. It doesn’t place sufficient value on advocating for the patient. It doesn’t place sufficient value on patient-driven research or clinical trials. If it did, there would be a body sanctioned to speak and act on a promising body of testimonials.

How many stories similar to the LDN story are out there? We don’t know, because they haven’t all been collected, stored, and shared. That makes me feel uneasy and should make you feel uneasy.

A single health success story doesn't register on the public health radar. It is not considered evidence. A growing volume of related health success stories, however; can build a compelling body of evidence that can no longer be ignored.

The collective LDN story is quickly becoming an excellent example of the power of numbers. The collective is greater than the single. Whilst the evidence remains spread far and wide it does not hold weight. It cannot be measured and it cannot help build a compelling case.


Governments need to acknowledge the value of patient testimony

The collective has a louder voice. Collectively, LDN health success stories provide sufficient evidence to advocate a clinical trial; the results of which could help many other sufferers.

The collective LDN story is also an excellent example of why ‘the system’ needs to change, why we need to rebalance the scales and give more weight and credibility to patient testimony. We need an organisation chartered to act on this type of evidence; an organisation that values patient testimony and can make recommendations (without prejudice) on behalf of patients from all corners of the globe.

Supporting data for this essay is in the form of untested patient anecdotes of health success. Whilst I firmly believe there is value in what I do, I am but an individual. I do not have the resources to validate patient anecdotes or recommend action.

Governments throughout the world could prove they value and give credence to patient testimony by implementing official bodies and processes chartered to act on compelling evidence in the form of health success stories.


Reference Sites:

(1) Case Health - Health Success Stories website - casehealth.com.au & casehealth.com

(2) LDN Research Trust, UK - ldnresearchtrust.org

(3) Low Dose Naltrexone Org, LDN New York Conference, LDN for MS Research Fund - lowdosenaltrexone.org & ldninfo.org

(4) LDN Forum, Germany - f27.parsimony.net/forum67727

(5) LDN Discussion Group - health.groups.yahoo.com/group/lowdosenaltrexone

(6) Gazorpa - gazorpa.com


Previously Published:

a) published on News-Medical.Net, 1 December, 2005
Drug stops multiple sclerosis - but sufferers can't get it!
Cris Kerr highlights Naltrexone in her latest issue of 'Case Health - Health Success Stories'. http://www.news-medical.net/default.asp

b) alternate version entitled 'Anecdotal evidence points to relief for MS sufferers' was published on ONLINEopinion Australia's e-journal of social and political debate, 3rd January, 2006

http://www.onlineopinion.com.au/view.asp?article=3905


Permissions:

Permission to reproduce the article 'Drug stops multiple sclerosis - but sufferers can't get it!' is granted on the provision the article remains unchanged/unaltered in any way, up to and including publication details and this permission advice.


Postscript request to publishers:

1) If you decide to reproduce the article I'd sincerely appreciate inclusion of the website descriptor 'about the Case Health - Health Success Stories website and what I do ... '.

2) The above article is also available in a formatted word document upon request.


..............................................................................................



about the 'Case Health – Health Success Stories' website and what I do ...


When you want to achieve success in any field the first thing you do is research how others have achieved success.

In the medical system, successes and failures should be recorded and shared within a framework referred to as Evidence-based Medicine. The framework has obvious merits, however; the patient’s perspective is rarely sought and included.

This means the health system;

1) doesn’t place sufficient value on confirming success via the patient perspective, and;

2) doesn’t record or recognize success when it occurs outside the framework.


We must ask … who is in the best position to provide evidence of health success?

I believe it’s the patient - so I created the Case Health – Health Success Stories website in 2001 to collect and share patient anecdotal accounts of success.

There are many ways we can contribute to our communities but most haven’t considered information as one of those ways. You can help improve another person’s health by sharing information on how you achieved success – and if you do that, you’re contributing something far more valuable than cash to your community.

The Case Health online database links keywords to stories. This framework serves a dual purpose. The database can be searched by symptom, condition, or treatment so patients can discuss what they’ve found with their doctor. Because the database also collects significant research findings, analysts can gain ‘insights’ into cause and effect, develop theories, or analyse public health statistics, benefits, or risks.

Optimum health is a universal goal. Challenges and resources differ between countries - but we are all human and we all share the same desire - to acquire and employ knowledge that results in the least invasive and least expensive path to optimum health.

I recorded my first Low Dose Naltrexone (LDN) health success story in November 2003. A recent significant increase in LDN linked success stories prompted me to write the article; ‘Drug Stops Multiple Sclerosis – But Sufferer’s Can’t Get it’. The article highlights the growing number of LDN health success stories, and advocates for universal health reform.

With governments around the world presently considering or developing new health frameworks, the timing is right for reform. I'd like to see patient perspectives included in all evidence-based (success-based) health frameworks.

If you’d personally like to contribute your health success story please use Case Health’s online story submission form or email contact form. Please first familiarize yourself with the website and read the Disclaimers and Conditions page. The website term ‘case study’ simply means “a real-life story with extra details so others gain a clear picture of how your success was achieved, and how they can repeat your success for themselves or others.”

I'm happy to help anyone with their story but apologise for the present 'English language' limitation.

The Case Health website remains at concept stage, however; the article ‘Drug Stops Multiple Sclerosis – But Sufferer’s Can’t Get it’ represents an inaugural proof-of-concept document.

Case Health – Health Success Stories is a free worldwide community health service website located at www.casehealth.com.au  and www.casehealth.com .

Post Edited By Moderator (DDye) : 7/21/2006 9:41:45 AM (GMT-4)

Tagamet (cimetidine) is a histamine H2-receptor antagonist. Naltrexone is a pure opioid receptor antagonist (it blocks your body’s opiate receptors) That is why in high dose form (50 mg) it is used to treat heroin dependence.

The lose dose form of naltrexone (4.5 mg) used for restoring immune system homeostasis for conditions like cancer and autoimmune disorders also causes a transient opiate blockade (3-5 hours) which triggers the body to produce more if its own opiates - endorphins. The immune system is full of opiate receptors, and this may be beneficial to immune status. However, there are other methods of action that are being explored by the primary researcher in this field, Dr Ian Zagon of Penn State. See his hundreds of papers on the topic. Note that he refers to "opioid growth factor" release as the result of opiate receptor blocade with naltrexone or other similar agents.

I am one of the "miracle stories", escaped an MS wheelchair sentence with Low Dose Naltrexone 4 years ago. Went on to help fund the first human trial in the US for MS at UCSF, results will be available May 2008. Oh, LDN is also an inexpensive compounded generic, about $30/mo.

My story and many LDN resources, including prescribing physicians at http://LDNers.org

SammyJo

 

 
After 4 rounds of chemo and the hair falling out and being very sick all the tumors shrunk but the oncologist stopped the chemo because she said it was poisoning my wife and not giving a good result.

So we were pointed the front door and told to get her affairs in order. We were told in August 2 to 6 months and we were at month 4. I had found Cyberknife on the internet and the Oncologist told me that there was no such thing and to stay off the internet. I had also found Low Dose Naltrexone too and was learning as much as I could about LDN.

I started my wife on LDN the first week in December but the large tumor was growing at an alarming rate and I didn't hold much hope that LDN could stop it.
By February I found a hospital beside me with Steriotactic Radiation which is the same as Cyberknife and in no time my wife was on the machine with the tumor now at 8cm it was zapped. That tumor is today 3cm * 1cm * 1cm and dead, it is only a scar and not a treat anymore.

By June the mass in the adrenal gland was gone gust from LDN and the two other tumors were 1.4cm, but we had a new problem a tumor in the brain 1cm ball and was causing terrible trouble. My wife had to go off LDN to take pain meds and the tumor in the brain was removed. She was off LDN for 2 months and the 2 little buggers grew to 3cm, so the LDN was working shrinking them slowly, If you look at the sizes the LDN was working great because they grew so quick when she was off the LDN.

Today after a CT scan and a PET bone scan on Monday and Wednesday the results are in. My wife has been on, since August. 4 rounds of a mild chemo, LDN, ALA, multivitamins, DLPA and sodium bicarbonate the two little buggers are back to 1.8 cm and the all clear from any other tumors. She had pain in her ribs for the past few weeks and we feared the worse but they believe its an infection and a few antibiotics will sort that.

 

So if your oncologist, who is god and knows everything says you are in a pile of trouble and your days are numbered give them two kicks in the ass (one for me) and show them the door. Get another Doc who is open minded and wants to help.

Good luck to you all...
John
www.ldndatabase. com