"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."
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.
Multiple Sclerosis and enhanced the quality of life of many Multiple Sclerosis (MS) sufferers. The drug is Naltrexone (also known as ReVia) and my 'Health Success Stories' database contains a growing body of compelling anecdotal evidence that it works, and; it works well - BUT, sufferers can't get it.
My name is Cris Kerr and I've been administering the 'Case Health - Health Success Stories' website for the past four years. The site collects and shares success stories (cure or improved quality of life) attributed to any intervention. Though based in Brisbane, Australia, the site holds stories from all over the world and the service is provided as a community service, totally free of any charge. See our review of Google LDN - The Book, by Joseph Wouk.
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.
At this time Naltrexone is only 'officially' approved as a treatment for alcohol or drug dependence, at doses much higher (around 50mg) than the very low doses (up to 4.5mg) 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.
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 organization 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 organizations that have traditionally initiated clinical trials - because they wouldn't gain exclusive rights (and subsequent profits) from a successful outcome.
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.
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 it's 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 publicized 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.
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. ... '
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. 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.
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 re-balance the scales and give more weight and credibility to patient testimony. We need an organization chartered to act on this type of evidence; an organization 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.
Multiple Sclerosis health success stories attributed to Low Dose Naltrexone (LDN) Treatment were extracted from the Case Health online database and assembled for this collection.
In keeping with the altruistic intentions of story contributors Case Health offers this booklet without charge or expectation.
We've been granted permission to 'share-it-forward' under the same philosophy - 'as-is', without change or modification - and on the understanding Case Health's administrator is not a qualified health professional.
The Case Health - Health Success Stories website collects and shares health success stories and case studies attributed to any successful health intervention. Though based in Brisbane, Australia, the site holds stories from all over the world and the service is provided as a community service, free of any charge.
"I'm an unqualified community health researcher who first became aware of a drug that can halt or slow progression of Multiple Sclerosis (MS), and enhance prolong quality of life for sufferers, after receiving a story submission in 2003. The drug is naltrexone, and my Health Success Stories database contains a growing body of compelling patient testimony that it works, and it works well - BUT, sufferers can't get it. It's not a cure, and it does not work for everyone, but it does work."
The 29 case studies in this book feature Low Dose Naltrexone (LDN) a controversial treatment being used successfully to treat a range of diseases linked by immune system dysfunction.
Reference: The Case Health website remains at concept stage, however; the administrator believes 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 that collects and shares patient anecdotal evidence of success and news of significant research results. The site was created in 2001 and is located online at www.casehealth.com/case/about.html
When you want to achieve success in any field the first thing you do is research how others have achieved success:
In the standard western medical system, successes and failures should be recorded and shared within a framework - alternately referred to as Evidence-based or Outcome-based Medicine - with the primary goal being the application of best practice in diagnosis, patient care, and treatment.
Whilst such a framework has obvious merits, the patient's perspective is rarely sought and included as corroborating evidence.
This means the health system:
1) doesn't place sufficient value on confirming success or failure via the patient perspective, and;
2) doesn't record or recognize success or failure when/if it occurs outside the medical system.
We must ask ... who is in the best position to provide evidence of health success or failure? Arguably, it's the patient.
There are many ways we can contribute to our communities but most haven't considered information as one of those ways. Individuals can help improve another person's health by sharing information on how they achieved health success - and if they do that they're contributing something far more valuable than cash to their community.
The Case Health online database was created to encourage individuals to share information on health success in the hope of making the path to health success shorter and easier for others.
The website collects and shares health success stories (personal or research) through an online database. Keywords are attributed to each story and 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. As the database also collects significant research findings, analysts can gain 'insights' into cause and effect and develop theories for curiosity-driven research, or gain insight into 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.
Case Health recorded its first Low Dose Naltrexone (LDN) health success story in November 2003. A significant increase in LDN linked success stories prompted the website administrator 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, the absence of mainstream recognition of patient testimony, and advocates for health framework reform.
With governments around the world presently considering or developing new health frameworks, the timing could be right for reform, such as patient perspectives included in all outcome-based health frameworks.
|1 : Stigma Increases Risk of Depression for People with Multiple Sclerosis : Penn State.|
|2 : $7M MS Progression Cohort to Research Multiple Sclerosis in Canada : Multiple Sclerosis Society of Canada.|
|3 : How Can We Predict Whose Multiple Sclerosis Will Worsen? : American Academy of Neurology.|
|4 : Cladribine Significantly Reduces Brain Atrophy in Patients with Multiple Sclerosis : EMD Inc..|
|5 : Multiple Sclerosis Onset Age Linked to Geographic Latitude : University of Tasmania.|
|From our Multiple Sclerosis section - Full List (49 Items)|
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