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rsevinc · Tarih: Pts Arl 15, 2008 8:39 pm Mesaj konusu: CASE HEALT - HEALT SUCCESS STORIES

THOSE WHO SUFFER MUCH

KNOW MUCH

Health Case Studies of
Low Dose Naltrexone (LDN)
in the treatment of a range of diseases

In keeping with the altruism of contributors to this book
Case Health offers the book to you without charge
or expectation.
You can 'share-it-forward' under the same philosophy
‘as-is’ … without changes or modifications

Case Health
Health Success Stories

rsevinc · Tarih: Pts Arl 15, 2008 8:55 pm Mesaj konusu:

Content

Articles

‘Those who Suffer Much Know Much’ 6
Multiple Sclerosis Case Studies

1) My post LDN MS story – Jim
2) Until there’s a cure there’s LDN – Carol
3) LDN-Out of wheelchair under a week – Scott 18
4) LDN-I have MS but walking and driving my car again – Bill
5) LDN-Improvement was gradual and subtle – Julia
6) LDN allows me to work with MS – Neil
7) Paul’s MS & LDN story began in 2004
8) LDN 4 me – Maurey
9) LDN-MS & Me – Jackie
10) MS & LDN since May 2002 – Joyce F
11) Thanks to LDN I can enjoy Life – Vickie
12) LDN has been a miracle for me - Art
13) LDN-My MS & TM Story - Crystal
14) LDN-I have PPMS but doing well - Emily
15) LDN giving me my best friend back - Nancy
16) LDN-Linda Elsegood’s MS Story
17) My MS with LDN journey - Gigi
18) LDN gave me Hope for the future - Annmarie
19) LDN has given me hope - Audrey
20) LDN-Mary finds proof of Santa for Noel - Mary

HIV Case Studies

21) LDN-HIV viral load down, T-cells up – Matt
22) LDN-HIV-blood & liver enzymes now normal – Noreen

Hepatitis B Case Study

23) LDN benefiting daughter’s HepB - Joyce C

Primary Lateral Sclerosis Case Study

24) Antioxidants & LDN stabilized my PLS - GaryC

Cancer Case Study

25) LDN is working-Metastatic IVB Cancer - Dee
26) LDN-Four years breast cancer free - Lola

Crohn’s Disease

27) LDN-Crohn’s and Me - Peter B
28) LDN-Crohn’s best it’s ever been - Claudia
Multiple Benefits
29) LDN-Every condition has improved - Celia

Interviews

Dr David Gluck
Dr Tom Gilhooly
Dr Jaquelyn McCandless
Dr Skip Lenz, Pharmacist

Inclusion

LDN Research Trust - LDN Fact Sheet 2008

Articles

‘Shared Vision for Health’
‘Bad things Happen When Good People do Nothing’

LDN Media - Video News & Testimony
LDN Media – Other News

Reference List
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

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rsevinc · Tarih: Pts Arl 15, 2008 9:11 pm Mesaj konusu:

THOSE WHO SUFFER MUCH KNOW MUCH

Cris Kerr, Administrator & Community Health Researcher,
‘Case Health-Health Success Stories’ website, October 2005, rev July 2007, rev July 2008

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.

A growing body of compelling testimony

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 naltrexone story is a powerful story that must be told and shared

Dr Bernard Bihari’s groundbreaking work with naltrexone commenced over twenty years ago and has since resulted in a small but growing number of physicians prescribing low doses of naltrexone (LDN) to minimize both progression and symptoms of disease for their patients

Bihari, who retired from private practice in March 2007, first successfully treated HIV patients, then MS and cancer patients. In the ensuing years LDN has been cited as beneficial across many other diseases such as Autism, Crohn’s Disease, Hepatitis B, and a long list of others. If you’re wondering how all these diseases are linked, look no further than an errant immune system.

In Scotland, Dr Pat Crowley has been prescribing LDN successfully for some time, and even traveled to New York to interview Dr Bihari for his own documentary. In the USA, Dr Jacquelyn McCandless found LDN benefits Autism and is responsible for the development of the first LDN topical formulation - a cream consisting of emu oil and naltrexone that is applied to the skin to bypass digestive issues. Dr McCandless and her husband are presently in Mali, Africa trialling LDN for HIV.

The number of doctors familiar with, and prescribing LDN is still small but growing. Other early adopter advocates are; Dr Bob Lawrence, Dr Tom Gilhooly, Dr Phil Boyle, Dr Burt Berkson, Dr Terry Grossman, Dr Joseph McWhirter, and Dr Jill Smith; who’ve championed patient needs and hence have contributed to positive progress for this controversial treatment option.

Due to the wonder that is the Internet, word has spread. A maiden patient conference dedicated to LDN was held in New York in 2005, and has since been followed by now annual conferences held in 2006 and 2007. This year’s conference is being held at the USC Health Sciences Campus in Los Angeles, California on 11 October 2008.

Disease sufferers whose progression has been alleviated by treatment with LDN have formed groups dedicated to spreading the word. They strive to help fellow sufferers via information-sharing, emotional support, and fund-raising for clinical trials; the first of which commenced in 2007 at the University of California, San Francisco (UCSF) and was partly funded by a dedicated support group linked to SammyJo’s LDNers.org.

Why are Clinical Trials important?

Clinical trials seek to answer the ‘who, what, why, where, how, and when’ questions that must be addressed to establish patient profile, efficacy, optimum dose and time, and of course, safety. 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 at present the safest system to follow, and patients wouldn’t want it any other way.

However, due to the absence of clinical trial data, the Low Dose Naltrexone Treatment Protocol has not achieved mainstream scientific acceptance as a treatment option for MS or any of the other diseases it has been benefiting. Whilst a growing number of doctors are prescribing LDN ‘off label’, most will not prescribe a treatment unproven clinically.

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) being prescribed ‘off label’ for the management of HIV, MS, cancer, Crohn’s and other diseases. In many jurisdictions doctors can prescribe this drug ‘off label’, but only where there is no ‘proven’ treatment for a particular disease or condition. It’s my understanding doctors in most jurisdictions can also prescribe a drug ‘off label’ as an adjunct that complements a ‘proven’ treatment - though this increases the risk of medication conflict for the patient.

What’s wrong with our ‘health system’

Clinical trials are expensive and are typically initiated and sponsored by companies that expect to patent a drug and recoup costs by commercializing the 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 they’re entitled to view the cost as an investment that will turn a profit.

Naltrexone is an old drug. It’s well past its patent protection period and is now a ‘generic’. A clinical trial of an‘off-patent generic drug’ doesn’t present an attractive commercial proposition for sponsoring organisations that have traditionally initiated clinical trials - because they can’t gain exclusive patent rights, and subsequent profits, from a successful outcome. To this end older drugs are often re-engineered - a molecule changed here and there - new drug, new patent, new price.

Unfortunately, health has morphed into a consumer market. That means, just like every other consumer market, the healthcare industry is ‘market driven’ in terms of meeting consumer ‘supply and demand’. This system assumes health consumers wanting or needing a particular healthcare product that’s not presently available, will create sufficient demand to drive commercial enterprises to bring a new product to market that fulfils their unmet need, or in other words, supplies their demand.

Subsequently, the primary driving force for Health Research, Development, and Clinical Trials is the potential for profit - but there’s no big profit to be made from trialling a ‘generic’ drug such as Naltrexone, regardless of the promise it holds to alleviate suffering and deliver economic public health benefits, so nothing happens.

Where does that leave the promise of Naltrexone?

Patient testimonies crediting LDN for improved health have been growing exponentially, and a large body of stories from MS sufferers who’ve slowed or halted progression of their disease or had symptom improvement with LDN are building a compelling case - but these testimonies represent only one facet of evidence. At present, health success stories alone aren’t sufficient evidence for most doctors to prescribe LDN.

A large body of health success stories, however; can provide sufficient evidence to advocate for governments to initiate and fund clinical trials, and; when health success stories are recorded in greater detail and numbers as case studies, they can also build into statistically significant volumes of evidence through the sheer power of numbers, achieving ‘volume value’ in their own right, and facilitating insights into public health priorities and improvement opportunities.

So how did we discover Naltrexone holds such promise?

In New York, USA in the 1980s, Dr Bernard Bihari was focused on improving outcomes for his patients. His research led him to Dr Ian S Zagon’s promising lab research with naltrexone in mice with cancer. Bihari began trialling lower doses of naltrexone, resulting in the successful treatment of HIV, then later MS and Cancer.
In the USA, Dr David Gluck, a childhood friend of Dr Bihari and LDN advocate, manages the website lowdosenaltrexone.org and it's sub-site ldninfo.org with the help of his son, Joel. The website features the
Foundation for Immunologic Research (FFIR), founded in 1989 by Bernard Bihari, MD and two colleagues in an attempt to raise trial funds for the broader range of LDN's promising applications.

In the UK, LDN Research Trust was founded in May 2004 by Linda Elsegood. Linda is an MS sufferer who’s benefited from LDN, and her monthly newsletter features other 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 sufferers of a range of diseases raising funds and contributing to support groups, in spite of their own daily health challenges, in the interest of helping other sufferers benefit from LDN.

Please pause to fully digest what all this means:

Even though benefits were first discovered over twenty years ago, well before any drug was developed to specifically treat HIV or MS, LDN is still not readily available as a treatment option. To my knowledge, this is one of the most powerful examples of the downside of a fully commercialized health market, and why ‘balance’ must be restored and monitored.

Those that could be helped are not being helped

Whilst there's growing testimony LDN could be the most effective and economic treatment option in the management of MS, HIV, and other diseases (for both the patient and the health system), the absence of clinical trial data means the majority of practitioners are still not prescribing LDN.

Years have passed. Those that could have been helped have not been helped, and those who’ve exhausted all other treatment options will still not hear of LDN.

What‘s Disturbing about this Picture of Health?

When you read LDN stories on my website or others I’ve referenced; 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. … ‘

The second thing you’ll notice is the extraordinary difficulty MS sufferers experience when seeking to trial this treatment. MS is a debilitating condition with multiple adverse symptoms. People with MS are already suffering. You can’t help becoming indignant at this 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. ... ‘

Patients Abandoned

Dr Bernard Bihari’s patients had professional support when they first commenced LDN treatment. This meant, even though his patients had never heard of LDN, they were told what to expect, and were prepared, monitored, and supported by a professional. If an MS patient experienced an exacerbation (with accompanying apprehension) in the first three to six months of treatment, they were likely comforted by; ‘this can happen, but experience has shown it does pass’.

Few doctors have knowledge of LDN, and many patients have been abandoned after their doctors learned they were taking LDN - a patient abandoned by her Oncologist, and MS patients abandoned by their Neurologists. Patients returning to their doctors after improvement have been told their initial diagnoses may have been incorrect or their MRIs may have been misinterpreted.

Even more astonishingly, patients who’ve experienced improvement have been advised to ‘keep doing whatever it is they’re doing’, without any enquiry as to what that may be – not what you’d expect from an enquiring scientific mind focussed on achieving successful health outcomes for their patients.
Patients without professional support have had to back-fill the knowledge gap and support themselves. This absence of support has resulted in some patients taking LDN without any prior research, knowledge or preparation, and subsequently, with unrealistic expectations.

High expectations, little or no knowledge of what to expect, and no professional support has led to unnecessary angst and disappointment. Subsequently, some who may have benefited from LDN have not, whilst others fortunately, found patient champions within the Yahoo lowdosenaltrexone patient discussion group and were eventually guided to success.

Dr David Gluck’s ldninfo.org website contains a wealth of information to aid research and preparation, yet there are still those who begin LDN in haste, who commence LDN concurrently with other medications that conflict, or who defer complementary lifestyle changes such as modifying their diet or alcohol intake, or supplementing nutritional or dietary deficiencies.

I've been observing communication exchanges within the Yahoo LDN group for years now, and it’s provided many insights: Those who patiently research and prepare prior to starting LDN are those most likely to succeed. In fact, patients taking ownership of their own health future has not all been bad news: Researching LDN has often resulted in patients initiating lifestyle improvements that complement and enhance their likelihood of success – and this positive turning point to overall improved health has resulted in additional symptom improvement.

LDN is not a high impact treatment. It can take six to twelve months to benefit progressive forms of MS. Testimony of long-term outcomes varies - from halted disease progression with some reversal of symptoms, to slowed progression with minor symptom improvement such as improved bladder control.

This is where case studies reveal their value, because they provide insights into factors other than LDN that may be contributing to improved outcomes or alternatively, contributing to unsuccessful outcomes - all of which have potential to enhance the likelihood of success for others who follow.

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

Research, drug development, and clinical trials are initiated by commercial sponsors. That’s okay, but there’s no recognized impartial body that can officially step up to the plate to speak and act on behalf of (advocate for) all patients. I know this because I’ve tried, without success, to find an authority that’s sanctioned to do so.
Officially recognized specialist ‘societies’ and ‘associations’ that should be acting on behalf of patients are often sponsored by organisations that are, as mentioned earlier, commercially and/or politically motivated and therefore, have little incentive to recognize, investigate, advocate, or champion the extended benefits of a generic, unprofitable drug on behalf of patients.

Doctors do record successful health outcomes in detail, but it takes time. At present, the primary motivation to devote that time is the chance of;
a) publication in a prestigious scientific journal, or;
b) an invitation to present at a commercially-sponsored scientific conference.

In both instances there’s little incentive for doctors to devote time to recording successful outcomes from ‘generic’ drugs that won’t enhance sales of patented, profitable drugs, or open pathways to new commercial markets within the multi-billion dollar health industry.

The present system is unjust

The present system is clearly imbalanced and unjust. It’s inequitable. It doesn’t place sufficient value on health success. It doesn’t place sufficient value on advocating for the patient. It doesn’t place sufficient value on the need for 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.

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

Patient testimony can become evidence through ‘volume value’

Recording patient testimony in a structured and meaningful way is important.

Testimonies scattered across the Internet may build awareness, but they can be easily devalued and dismissed as random patient anecdotes. They don’t register on the public health radar, can’t be validated or measured, are not considered evidence, and don’t help build a compelling case.

A collection of health success stories presented as ‘case studies’ can build into a compelling body of evidence that can no longer be ignored. The collective is greater than the single, and though the LDN story is already an excellent example of the power of numbers, it is still in need of greater patient support.

It’s my hope the scientific community will one day be compelled by this volume of corroborating case studies to recognize patient testimony can achieve ‘volume value’ in its own right.

Governments need to acknowledge the value of patient testimony

The collective LDN story is an excellent example of why ‘health systems’ worldwide need to balance the scales in favour of patients and give more weight and credibility to patient testimony.

It’s my hope governments worldwide, presently reviewing and implementing longer-term visions for improving population health, will welcome, accommodate, and integrate patient testimony as a valued, protected, and integral part of their public health IT systems, and will create official bodies and processes chartered to act on behalf of patients and their evidence - impartially, and without prejudice or conflict of interest.

I am but an individual without sufficient resources to lobby for action on this international human rights issue, this orphan desperately in need of more champions - hence this free book in the hope of building international awareness and support.

He who suffers much will know much
Greek proverb

Supporting data for this essay is in the form of untested patient testimony of health success. I do not have the resources to validate each testimony.

This article has been previously published in earlier versions with different titles:

a) 2005 version 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/?id=14749
b) 2006 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
c) Drug stops multiple sclerosis - but sufferers can't get it!
was published in the Case Health LDN Booklets 2006, 2007

Permission to Reproduce this 2008 version ‘Those Who Suffer Much Know Much’
© Case Health – Health Success Stories –http://www.casehealth.com.au - Case Health Pty Ltd

grants permission to reproduce this article (article only) on provision the article remains unchanged/unaltered in any
way, up to and including publication details and includes this permission advice. Postscript request to publishers: If you
reproduce this article, I'd sincerely appreciate a courtesy advice.

_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

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Ercan Zorlu · Tarih: Sal Arl 16, 2008 8:00 am Mesaj konusu:

SEVGİLİ RSEVİNÇ..
bu yazı dizisi için sana hakikaten teşekkürler..
Yazının bitiminde okuyanlar anlayacaktır işin değerini..
yazının formatlarını değiştirirken değişen kalıp ve şekillerri ,
düzeltmek kolay gözüküyor ama yazının uzunluğu epey zamanını alacak..
ŞİMDİDEN HERKES ADINA TEŞEKKÜRLER...
YAZININ DEĞERİNİ OKUYANLAR ANLAYACAK...
_________________
"Low Dose Naltrexone (LDN) may well be the most important therapeutic breakthrough in over fifty years. It provides a new, safe and inexpensive method of medical treatment by mobilizing the natural defenses of one's own immune system.
........... " — David Gluck, MD
ÇEVİRİSİ.:...............
"Düşük Doz naltrekson (LDN) de en önemli tedavi atılım elli yıl içinde olabilir. Bu kişinin kendi bağışıklık sisteminin doğal savunma seferber ederek tıbbi tedavi, güvenli ve ucuz yeni bir yöntem sağlar.LDN önemli sağlık maliyetlerini azaltır ve hastalıkların geniş bir dizi tedavi artırır........

Naltroxene (LDN = Low Dose
Naltrexone)..(ETHYLEX -VIVITROL-NEMEKSİN=Muadili NALTREXONE)
OKUNUŞLARI:Naltrekson,Naltrexone,Naltreksone
http://www.barsakforum.com/naltrexone-tedavisi-crohn-da-vt58.html?highlight=naltroxen

rsevinc · Tarih: Çrş Arl 17, 2008 11:33 pm Mesaj konusu:

1) My post LDN MS story – Jim

LDN since December 2003

- story submitted Dec 2005
- story updated Dec 2005
- story updated Aug 2006
- story updated July 2007

- story updated July 2008 (4.5 yrs on LDN)

SPECIFICS

DIAGNOSED
- Jan 2002 - Relapsing Remitting Multiple Sclerosis (RRMS)

MEDICATION (pre LDN)
- Feb 2002 to Nov 2003 - Beta-Seron

MEDICATION (post LDN)
- Dec 2003 to Jan 2004 - 3mg Low Dose Naltrexone (LDN)
- Jan 2004 to present – 4.5mg Low Dose Naltrexone (LDN)

LDN DOSE & TYPE
a) Dose – 3mg for 1 month, then increased to 4.5mg Low Dose Naltrexone (LDN)
b) Time – nightly, as close to 11pm as possible.
c) Type - Compounded capsules with pure Naltrexone powder and Avicel filler.

SUPPLEMENTS
- May 2008 – one each of the following:
Mornings, as follows:
Primal Defense (Probiotic)
Alpha - Lipoic Acid x 300mg
L-Carnitine (CarniPure) x 500mg
Super "B" Complex
Noon, as follows:
Primal Defense (Probiotic)
Alpha - Lipoic Acid x 300mg
Turmeric Extract (95% Curcumin)
Selenium x 50mcg
Resveratrol x 75mg (Japanese Knotweed)
Evenings, as follows:
Primal Defense (Probiotic)
Alpha - Lipoic Acid x 300mg
Oregano Extract x 450mg
Zinc x 50mg
Ginkgo Neuro-Mind x 50mg
Bedtime (around 11pm:
Cal-Mag (Chelated) x 250mg
Cat's Claw x 300mg
Move Free (Glucosamine 1500mg Chondroitin 1200mg Hyaluronic Acid 3.3mg)
Vitamin C x 1000mg (unless feeling 'puny' then I up it to 5000mg for a couple days)

DIET
- 2007 Joined weight watchers and lost 55 pounds - 70 lbs more to go. Attempting to quit smoking (talk about stress)
haha.
- 2008 – My diet has improved since I made time to regroup and reorganize my thoughts on my eating patterns. I’ve
adopted the advice of my Kinesiologist: I drink more water, I do the 'juicing' (which has become a favorite), I eat more
green vegetables and fruit, I stay away from dairy as much as possible, and I eat very little red meat (sigh). Weight loss
is still an issue but slowly improving too. All in all, I’ve improved my eating habits and my diet is much 'healthier' than it
was previously.

[b]EXERCISE OR INTERESTS[/b]

- 2007 - Tai-Chi & martial arts, learning to relax, as well as more walking.
- 2008 – my strength is a little better since I've started doing some more exercise. I spend less time in front of the TV, and more time up and about, looking for things to do that will occupy my time as the energy permits – and I stay away from stress if at all possible. I've 'finally' learned to calm down, and not be such an "A" type of person. For me, it was really stressful. Now, I'm 'laid back' and enjoying life more, doing some woodwork, and camping/RVing.

My Story – December 2005

My Story AFTER beginning Low Dose Naltrexone (LDN) – in December 2003: Personally, I believe it has halted the progression of my disease and it has given me back some of the abilities I thought were gone for good. No....this is NOT a solicitation, this is not some sort of scam, this is MY Story ... MINE ... you want to find out more, check out remedyfind.com, then go to ldninfo.org and you may, just may, have an inkling of why I've now got hope back in my life.

My neurologist says it's a placebo effect, and I said, okay ... you'll write the prescription for the sugar pills... okay?? She did - then we parted company. She didn't like the fact I'm better, and I'm no longer on the poison's she wanted me to take. (My opinion of the CRABS drugs, and mine only.)

I don't stagger when I walk, don't rely on a cane for balance, don't use a wheelchair for the distances anymore. No longer do I slur my words, don't shake, spasm, tremor or any of that. The never-ending migraine ... gone. ... Now if I get a headache, it's usually due to sinuses, and a sinus tab or couple of Excedrin take care of it. Am I cured??? Not by any stretch of the imagination, and sadly, most people don't receive the almost full reversal of symptoms that I've had the joy of receiving. Most all do say they experience better bladder control.

If you've made it this far, and maybe checked out the LDN website - go back and re-read it - then read it again a couple more times before you jump up and down and think THIS IS IT!!!! Read ... ‘it's intended’ or I should say, ‘it's believed’ that it halts/stops the "PROGRESSION" of the disease.

Anything else like symptom improvement is a happy side effect and not a guarantee. Just icing on the cake ... something to be hoped for, not expected – but a bonus. Starting to sound like a ‘bleep’ ad for the drug ... I'll end here. May the Lord Bless you and watch over you, and remember - this is just my version of how ‘I’ felt, not anyone else. Some people actually feel much worse.

UPDATE: December, 2005

Been a while since I checked in with the discussion group, and today is my 2-year anniversary on LDN.Started Dec11th 2003 at 3mg, was on that for a month, then upped it to 4.5mg and have been there ever since. Like Reg, I'm another Happy Camper on LDN who has a lot to be thankful for. I still tend to 'lurk' in the shadows of the group, and will probably continue to do so, but thought I'd throw my 2 cents in for what it's worth. So, now that I'm out of my "Cave" I'll re-gale you with a short version of Thanks....

Thanks to the 'old-timers' for your encouragement a-ways back, when I was at my ropes end just looking for something that would halt/stop the onward progression of this MonSter. All I wanted, hoped for, was something, anything, that would stop me from getting any worse. Received more than I was hoping for.

As it turns out, I realised an ‘almost’ complete turnaround of symptoms. Not remission. I did try Dr. Bob Lawrence's ‘two days off’ system but couldn't walk at the end of the two days so have learned, for me, it 'appears' to work better without having scheduled breaks and missing doses. Again, thanks to all who helped me in the beginning. To try to name all of you would be next to impossible and if you remember me, then you've probably helped me at one time or another. Thank you! Cured??? Not hardly, but I will say again, my'worst' day taking LDN is by far and away much, much better than my 'best' day on the injections.

Just my personal observation as it relates to me. I still have the ups and downs, but seem to bounce back pretty well. I have good days, and 'better' days. Any day I can get up, out of bed, make it to the 'throne'-room(blush) without falling down, having an 'accident' along the way, and make it there by myself, without a cane, or the wheelchair, is a good day. The better days are when I have the energy to last all day without falling asleep in the middle of the day, actually get projects complete around here.

Being able to (half-way) think once again, having a "Memory" once again, balance, bladder control, no more tremors/shakes, a general 'lessening' of most symptoms to the point most are easily tolerated or ignored altogether, is absolutely wonderful - more than I ever expected. It's nice to stand for more than a couple of minutes without having to sit down because the legs are starting to wobble, tingle and go numb - and if they go numb, I fall.

I have pushed myself too hard on occasion, and have paid for it, but not like in the past. No more knives in the backs of the thighs, arms, back, or elsewhere. No more electric type shock sensation, no more Intense burning over half the body – very mild now. If only ... if only I had been guided to the LDN website earlier, had been given LDN information and the option to try LDN medication in the beginning, probably would not have (maybe?/maybe not?) ANY lingering symptoms as I have now.

I'll happily settle for what I've regained as opposed to what ‘could have been’ because I was lucky. I found LDN and had the courage to try LDN before I got even worse. What if I hadn’t? I know many have given coffee away, but I still drink maybe 4-6 cups of coffee in the morning. Two years, no ... I repeat … NO relapses, no flu, no colds, no pneumonia, no more migraines, no more ‘Sorry honey, I"VE got a headache’ <grin> and I really believe, NO progression. To ALL the newbies joining the group, and people I haven't had the chance to meet yet in the group … Welcome, and hang in there. Listen to the 'old-timers' as they've been around a little while, and just want to help you if they possibly can, plus from what I've been reading, some of the newbies are pretty sharp themselves and have done some homework.

There is a wealth of information to be harvested here, and information to share that is available to all of us. Sharing is important – when you’ve been helped, it’s your turn to help others. All we have to do is 'post' a question and someone who has information, answers ... hmmm duhh ... if I can do this, anyone can. <grin> Lot of sharp people there, and they want to help.

To anyone out there still sitting on the fence... read all you can about LDN - the pros, the cons. One thing I did that you might try ... ask if you can e-mail a couple of people off the message board (private), get their story, ask if you can call them up, or ask if they can call you. Talk to them "in person" so you get up front and personal. For me, it changed the whole way I thought about it. Figured it couldn't hurt, so why not, take a leap of faith, and maybe, just maybe, it might help. For me, it did. Hopefully for you, it will also.

Hope this makes sense to 'someone' out there, hmmm, guess I'm sicker than I thought, as it's starting to make sense to me. Haha Time to go before this becomes another book. Off to my "Cave!" Have a Great Day!

UPDATE: July, 2007 - 3 years on LDN

Just checking in to say life is pretty decent once again. :-) June 11th was 3 1/2 years on LDN. Life changed literally overnight. From the pit of despair, having to use a wheelchair, cane, or the walls to remain upright, to being able to walk again without needing any of the aforementioned as aides.

I count myself among the blessed that have received an 'almost' complete turn-around of symptoms. Three real challenges remain - extreme fatigue, weakness, and heat intolerance. I still have my 'moments' when things aren't quite right. Some of the symptoms raise their ugly heads and make a brief re-appearance to let me know they have not gone away completely...just laying in wait...no biggee...been here before and now know they are only temporary. Thing is NOT to freak out...just to RIDE it out and all quiets down again.

I find that if I stay up and moving, keeping the mind active and the hands busy, I can ward off the fatigue most of the time, and some exercise and lifting weights just to keep 'toned up' help with the strength. So far, the only thing that really combats the heat is remaining indoors under the air-conditioning unit - sigh.

It does help to wear a neckerchief with the 'crystals?' that absorb water and puff up, after it's been in the
refrigerator to chill. Using a bottle 'mister' you pump up and spray, plus a small hand held portable fan. They all help ‘some’ but as with anything, they do have their limits. Keeping stress out of my life (much as possible) has been a big help. I remain optimistic that I 'may' improve some more...just have to keep working at the lifestyle changes.

We (wife and I) are planning on attending the next LDN conference in Nashville, TN, and hope to meet some of the people we've been in contact with via the LDN discussion group and phone calls. I don't post much anymore as there are now a lot of people to help the newbies but I still help behind the scenes. All we can do is tell our story and let those who are thinking about trying LDN get all the information they can, and make up their own minds about it.

I still try to talk to at least one person a day about LDN. Good news is; after 3 1/2 years there are now 4
doctors in town that will prescribe LDN, another two are located 10 miles south and an hour north of us. 20
people I know personally are taking it here and they’ve told others who are now taking LDN. This has taken on a life of it's own!!!

We are anxiously awaiting the results of the UCSF LDN clinical trials, and as soon as we hear anything I'm taking plenty of copies of the information to my doctor so he can pass it out to other doctors he knows.

UPDATE: July, 2008 – 4.5yrs on LDN

My My...time really does fly. Here it is, almost 4 1/2 years later, after starting on a 'new' (old) therapy for
MS. For me, one that has worked very well and not like the 'traditional' therapies that did not work me.

Unlike the 'traditional' therapies, there are no flu-like symptoms, no nausea, no aches and pains, no cold chills, no night sweats, no headaches, no sick feeling every other day. Basically, no side effects for me, at all.

Still Hangin’ in there. No progression noted. Symptom reversal still remains pretty much the same, but I still have the ups & downs but that is to be expected. I still suffer from extreme fatigue at times, weakness, and severe heat intolerance, but, I am working to improve these 'challenges' a little at a time and finding ways to overcome them to some degree. Better than before, but not great, sigh.

What I have to give thanks for are the appearance of, 'reversal' of symptoms. Strength is a little better since I've started doing some more exercise, and diet, now that I've taken the time to regroup, reorganize my thoughts on my eating patterns, is improving. Weight loss is still an issue but one that is 'my cross to bear' at this time but slowly improving too.

I take my vitamins throughout the day. Now I do the 'juicing' which has become a favorite. I eat fruits &
vegetables and stay away from the dairy as much as possible. All in all, I eat much 'healthier' than previously, spend less time in front of the TV, and more time up and about, looking for things to do that will occupy my
time as the energy permits – and I stay away from stress if at all possible. I've 'finally' learned to calm down, and not be such an "A" type of person. For me, it was really stressful. Now, I'm 'laid back' and enjoying life more.

General overall Health: Pretty decent. At times, or brief periods, I can "almost" forget I have MS. "Almost."

For Zil: It all goes back to what a friend said..."Never Give Up!" "Never Surrender!"

Sooo, with that in mind, I start my day.

For you, and anyone who may read this...Have a Great Day!

Jim, USA (Cap'n Caveman & Wo-man)

MY RECOMMENDED READING:
To any and all who don't know there are a few books you might be interested in checking out...

1) ‘20 Years And STILL Coping and Prevailing’ (with MS) by Thomas Bayuk
2) 'The Things We Don't Talk About...OR....You Better Smile Through The Tears' (also) by Thomas Bayuk
3) 'Up the Creek with a Paddle' by Mary Anne Boyle Bradley

MY RECOMMENDED SITES (apart from this one):
1) ldninfo.org & lowdosenaltrexone.org
2) remedyfind.com

Jim Dec‘ 05

“Cured??? Not hardly, but I will say
again, my ‘worst’ day taking LDN is by
far and away much, much better than my
‘best’ day on the injections.”

_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Çrş Arl 17, 2008 11:45 pm Mesaj konusu:

2) Until there’s a cure there’s LDN - Carol

LDN since Sept 2002
- story submitted July 2006 (almost 4 yrs on LDN)
- updated August 2007 (5 yrs on LDN)
- updated July 2008 (almost 6 yrs on LDN)

SPECIFICS

DIAGNOSED
-Jun 1999 – Relapsing Remitting Multiple Sclerosis (RRMS)

MEDICATION (pre LDN)
- 1999 to May 2006 - Topamax 100mg(I started on Topamax after I had 3 seizures, 2 of which were in a Walmart Store in Florida in 2003. My Neuro felt it was due to my MS and the store lighting. I stopped taking Topamax in May 2006 because after a few years on LDN I felt so much better and hadn't had a seizure in years. I'm prepared to go back on Topamax, if necessary, but am hoping that won't be the case.)

MEDICATION (post LDN)
-Sept 2002 to present – 4.5mg Low Dose Naltrexone (LDN)

LDN DOSE & TYPE
a) Dose – 4.5mg Low Dose Naltrexone (LDN)
b) Time - I take the Naltrexone between 10pm and 2am each day
c) Type – Compounded capsules with pure Naltrexone powder and Avicel filler.

MEDICATION OTHER (post LDN)
-10 mg of baclofen, twice a day

SUPPLEMENTS
- May 2008 - I take the following:
Vitamin D x 1 daily
Multi Vitamin x 1 daily
Fish Oil x 1 daily

DIET
– July 2007 - Always been careful - fresh vegetables, fruits, chicken, fresh fish, whole grains - rarely eat red meat, and
limit my dairy, white flour, refined sugar intake - occasional sweets.
- May 2008 - I have the same eating habits as I've always had. Fresh vegetables and fruits, very little red meat, a lot of chicken and fish, whole grains, occasional sweets, but I do limit my dairy, sugar and white flour intake.

EXERCISE & INTERESTS
-LDN has helped me get more exercise. I take slow walks.

My Story – July 2006

My name is Carol. I am 49 yrs. of age, and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) in June of 1999. When I received the results of my final test (spinal tap) and was told of the ABC's (an acronym for the first initials of MS drugs, also known as CRABS) I had to chose from (none of which sounded good to me) I told my Neurologist from the very beginning … "I Will find something better".

I was immediately prescribed Avonex and remained on it for 2 yrs, along with a handful of pills each day to help with fatigue, loss of sleep, and spasms. The stress alone of having to inject myself with an intramuscular shot once a week was a horror. Dealing with the side effects was just as bad. But I did have hopes the Avonex would help me.

I found myself going into extremely bad relapses (every 3-4 months), which kept me from walking for sometimes up to 6 weeks at a time. Along with each relapse came the Steroid IV treatments, followed by 13 days of weening off with Prednisone pills. This DID NOT make me happy, nor did it make me any better.

My Neurologist, finally, decided to try me on Copaxone. Injecting myself every day led to more stress and I found myself having extremely bad side effects. After two months of extreme side effects, I realized I was allergic to it and again changed my therapy.

I moved on to Beta-Seron - every other day injections - still hoping I would find some relief and start slowing the progression but around this time I started using a cane to get around and found my health and life was changing dramatically - for the worse - as time passed.

The relapses didn't stop although they weren't hitting me quite as often, but my symptoms were definitely worsening and my health deteriorating. I was "In search of" something better, something that was actually going to HELP or STOP my MS before the rest of my body was destroyed.

That’s when I heard about Dr. Bihari and Low Dose Naltrexone (LDN) from a friend who also has MS.

I immediately made a call to Dr. Bihari's office and set my appointment with him for a month later. During that time I stopped all my medications, injections included, to rid my body of all other chemicals. I wanted to start the LDN with nothing else in my system so I would know EXACTLY what, if anything, it was doing for me.

I did however, let my Neurologist know what my intentions were and showed him all the printed information I had on LDN. I told him I respected his opinions but that it was MY body, and as I was the one with MS I should be able to make MY own decision on how to treat it. He was not impressed because LDN is not yet FDA approved for MS, but I stood my ground.

On September 9th, 2002 I met with Dr. Bihari in NY. I lived in Florida at the time but I would have travelled from anywhere. Dr Bihari prescribed LDN and I started my first dose of 4.5 mg Naltrexone capsules the same night.

On the second day after starting LDN I woke up without spasms. I was convinced it was too soon to be the LDN and was thinking it was "just a coincidence". By the third day I was feeling strong enough to walk along the beach - something I had NOT been able to do in the three years since my MS diagnosis, and certainly not with any of the previous drugs I’d been prescribed. I walked a good 3 blocks in the sand ... I couldn’t believe it!! I was elated and by now convinced LDN was already having an effect.

Nothing happened quickly, but as time progressed I noticed small incremental improvements – gradually increasing body strength, more clarity, less spasms, less numbness and tingling, fewer headaches - and my sleep pattern was getting better.

I have been on the LDN for almost 4 yrs now, and will NEVER stop taking it.

My life has Quality again now - something I feared I’d lost forever. I won't sit here and say I don't have some down days - I still have MS after all! But, my days are mine again. They belong to me now, not the MS - and I'm feeling stronger than I have in years. I no longer use my cane unless it’s for extremely long distances and this pleases me immensely.

I haven’t had one relapse since starting LDN. LDN has STOPPED my MS progression - not just SLOWED it down like the other therapies I’ve used. I don’t have to worry about side effects either – another reason I wasn’t worried about trying LDN.

I'm a true believer in LDN and here’s why: After starting on LDN I had an MRI (in 2003). It showed that my (4) "lesions are healing themselves". Those words came from my Neuro when he showed me the films and I couldn't see the lesions any longer. Yes, they were Prominent, and now only one small spot is visible.

I asked my Neurologist if he was still questioning the benefits of LDN after seeing the wonderful improvement: His cautious reply was … "Don't stop doing what you’re doing" … yet he still will not write a prescription for LDN. My last words to him were, "Shame on you for not sharing this with the rest of your patients".

After moving back to NY I made an appointment with a new Neuro - and that's a whole other story!! Let's just say ‘she was shocked’ by my MRI results. In the past 4 years (since starting LDN) there has been no
progression.

There she was - telling me my lesions HAD to be multiplying - and that IF my results showed more lesions, she wanted me to consider going back on the injections – and she added that if I didn't go back she wouldn't take me on as a patient! Needless to say I left her office with a copy of my MRI report and told her I'm doing what is BEST for MY body and I now had to decide whether or not I wanted HER as my Neuro!

I was diagnosed with Lobular Breast Cancer in February 2006. It was my first Mammogram (wrong on my part to have waited so long). It turned out to be Pre-Cancerous but I still had to have the tumor removed. In my heart I honestly believe this could have resulted in a very different outcome - a horror story. I believe taking the LDN has kept it at bay, kept it from growing. I turned down the hormone therapies (which I found out can cause Cervical or Uterine Cancer) and am sticking to my LDN. I hope all doctors will take notice of this wonderful treatment option - that the major media will finally acknowledge LDN - that LDN clinical trials for MS and other diseases will happen and will prove LDN to be an effective and economical treatment - and that the FDA will approve it - so everyone suffering from this and other Auto Immune System Diseases will be able to benefit from it.

UPDATE: July, 2007

I'm happy to say.... LDN has NOT stopped working for me! I'm still quite content with how I've been doing since this time last year. June was my 8th anniversary of being diagnosed and this September will be 5 yrs on LDN. I truly haven't experienced too many changes, other than slowing down a bit more. (I did just turn 50!!)

My legs get a little more worn out than they did a year ago, and I've had a few minor flare-ups - but no relapses, and nothing major like before LDN. I have an appointment with a new Neuro this month. I'm sure that will be interesting! I plan on taking all my info on LDN with me, along with my MRI films for the past 8 yrs (those of which have no changes in them) and see how that goes. I love knowing that I can help others in some way when it comes to my experiences with LDN.

I AM a BELIEVER

UPDATE: July, 2008 – almost 6 years on LDN

I am still benefiting from LDN. I can't imagine a day without it! And, may I add, that I am extremely pleased to have been asked again to have ‘My Story’ added to this year's book. I can only hope that someone finds it helpful in their fight against M.S.

Remember my quote:
"Until There's A Cure...
There's LDN"

God Bless, Carol, USA

Carol Jul‘06

“I love knowing that I can help others in
some way when it comes to my
experiences with LDN.
Until there’s a cure, there’s LDN.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Pts Arl 22, 2008 8:34 pm Mesaj konusu:

3) LDN-Out of wheelchair under a week - Scott

LDN since July 2004- story submitted May 2005
- story updated Jan 2006
- story updated May 2006
- story updated July 2007
- story updated July 2008 (4yrs on LDN)

SPECIFICS

DIAGNOSED
- Oct 2001 - Relapsing Remitting Multiple Sclerosis (RRMS)

MEDICATION (pre LDN)
- Jan 2002 to Apr 2004 - Avonex
- Apr 2004 to July 2004 - Rebif

MEDICATION (post LDN)
- Jul 2004 to Aug 2004 – 3mg Low Dose Naltrexone (LDN)
- Aug 2004 to present – 4.5mg Low Dose Naltrexone (LDN)

DOSE & TYPE
a) Dose – 4.5mg Low Dose Naltrexone (LDN)
b) Time - I take the Naltrexone at 11pm each day
c) Type - My Naltrexone capsules contain pure Naltrexone powder with Avicel filler.

SUPPLEMENTS- July 2008 – This is my complete current list:
B-12 sublingual Multi-Vitamin
Vitamin A
Vitamin B complex
Vitamin C
Vitamin E
Folic Acid
Ginkgo Biloba
Vitamin D
Calcium
Fish Oil
Magnesium
Valerian Root

DIET
- Swank diet since 1 January 2004

EXERCISE & PHYSICAL THERAPY
- 2007 - aqua therapy at the YMCA three times a week plus exercising at home three days a week
- Jun 2008 - aqua therapy, exercising at home, physical therapy instead of YMCA

My Quest for LDN - May 2005

Hi, I’m a 31-year-old male diagnosed in October 2001 with Relapsing Remitting MS. I had slurred speech that went away before the diagnosis. I felt all right in 2002 and then in mid 2003 I began to have problems.

In January of 2004 I was laid off from my job because of poor balance, bladder problems, deteriorating vision, and poor handwriting. In March of 2004 I began to use a wheelchair due to leg weakness.

I began to read everything I could on what helped others with MS. I found Remedyfind.com. I read about Low Dose Naltrexone (LDN). What was this? The more I read the more I liked the idea.

I asked my doctor about it and without batting an eyelash she said “NO! It’s horrible stuff.” Why was I told ‘no’ so quickly without a discussion? Many people were on this medication and it was working well for them. I thought I deserved more than a simple “no”.

I found another doctor who would prescribe it and began LDN on 23 July 2004. Within two weeks my muscle
spasms went. My bladder urgency was the same but I could deal with that, as my other symptoms were
getting better. Within a few days I was out of my wheelchair (I was in it for five months) although I was using
the walls to aid my walking.

Ten months later, I mow my own grass. I still have balance problems and muscle spasms but they are not as bad as they were. My “brain fog” has gone completely. The problems I have with my vision have lessened and I plan on seeing an ophthalmologist. My eyes are stopping me from driving.

I use a pedometer to track how much walking I do each day. I tend to walk about 2 to 2.5 miles a day, I also exercise 3 times a week to help keep up my strength. LDN has given me my life back.

UPDATE: January, 2006

First I’ll relate a little more history to help you understand why I was happy to try LDN and why I continue to take LDN.

I am now a 32-year old male. I was diagnosed with Relapsing-Remitting MS in October of 2001.

I was on Avonex and Rebif (two of the CRAB drugs) for over two years. I quickly deteriorated, particularly toward the end of that time - winding up in a wheelchair for 5 months, and ‘legally blind’ for 18 months.

Three months into my wheel chair nightmare (around May 2004) I was surfing the internet (which was frustratingly difficult with my now severely deteriorated vision) and stumbled across information on a drug called Naltrexone.

It appeared other MS sufferers were having success with the drug. As my condition had deteriorated on the CRAB drugs, I was tempted to try Naltrexone but concerned it wasn’t a mainstream treatment. It’s wise to be cautious so I read everything I could find. It took me two months to decide and to find a doctor who would prescribe Naltrexone.

In July 2004 I stopped taking the CRABS completely and started taking low doses of Naltrexone (LDN).

In less than a week I was out of the wheelchair yet still using the walls to walk and balance myself. Being determined, I began to exercise at home. I was soon able to stand-up whilst showering.

You can imagine how elevated I felt after noticing improvement so soon after starting on LDN.

In January 2004 I had started on the Swank diet, supplemented by a strict vitamin regimen. I kept up this regimen after starting on LDN and I still use this regimen because I’ve noticed I just feel better all-round.

I am writing this in January 2006 after 18 months on LDN. I mow my own grass with a self-propelled mower and my vision impairment has improved enough that I have just been approved to drive during daylight hours!

I attend aqua therapy at the YMCA three times a week while exercising at home another three days during the week. I live alone and perform my own housework. I anticipate that in mid-summer I will start physical therapy.

Overall, I do very well managing the symptoms with the LDN. I can still have a bad day but my worst day now is much better than my best day pre-LDN.

During this entire time since my diagnosis, I have maintained the attitude that I would rather try and fail 1,000 times than never try at all. I am so thankful that I got off the CRABS and started LDN.

To any and all people that are still researching LDN for their condition, I urge you to go ahead and start it now while continuing your research because I’ve noticed the majority of individuals who post to the LDN forum (with MS or other conditions) regret not starting on LDN sooner.

UPDATE: May, 2006

I added Magnesium to my supplement regimen in April 2006. Within 5 or 6 days it made my legs feel very heavy, like walking thru knee-deep mud, and I was doing the wall walking thing again. At first I wasn’t sure what had caused the change. I had been taking 800 mgs Magnesium at the time, so I tried reducing it to 400 mgs. The improvement was almost immediate and I felt a lot better. Having said that, I continue taking 400
mgs Magnesium because I think it has helped with my muscle spasms. I haven’t changed anything else - LDN treatment, Swank diet, exercise, and supplements remain the same.

For the past 2.5 years (that’s right I said years) I had not been able to drive. However, my eyes have improved gradually and I got the BMV’s approval - so I am driving again! I am soooo happy because I’d been relying on others to drive me places. I only went to the grocery store once a month because that was the only time someone could take me – it was too far to walk safely and manage grocery bags. I used to sit alone in
my house a lot.

I tell ya ... now that I have a car and drive myself places (and even though I’m restricted to daytime driving only) no one will be able to wipe this smile off my face. My eyes had improved gradually with time - until the point I suspected I’d be able to pass the test so I went to see a doctor the BMV recommended.

What do I attribute this particular improvement to? I honestly don’t know. It could be due to one thing or a progressive improvement due to my complete regimen. Because I can’t attribute my improvement to any one thing, I don’t want to raise any false hopes.

UPDATE: July, 2007

Now a year later it is time for my 3-year update. There have not been many changes in the last year. I did, however, miss two weeks of LDN (due to 2 surgeries). Also, because of the surgeries I had to miss approximately 2 months of aqua therapy. Due to these 2 factors my health declined slightly. I now have poor balance and use a cane more than I did before.

Aside from that I don't have anything negative to say. I can say the lack of exacerbation is still a positive. I'm still driving (though not a lot and always nervously) and still living alone keeping my independence. I’ve tried several times to get my neurologist to write a prescription for LDN, but his only compromise was that he’d write a prescription for LDN if and only if I would take Copaxone as well. Needless to say I said ‘no thanks’.

I did show him the LDN conference DVD. I also asked how he could explain me getting better on LDN. His response was; "That's just MS". I'm going to be looking for a new doctor (doctor number 5) very soon. I believe all of my improvements are directly a result of using LDN religiously. I will continue to use it until someone finds a cure for MS. As another has said; "until there is a cure there is LDN." Period.

UPDATE: July, 2008 – 4 years on LDN

No change to report. I still take LDN and it's still working for me. I still go to the YMCA for aqua therapy however, for the summer session I will not be going as I will be focusing on mowing my grass. That may not sound much, but it takes about a week to mow it (when I first bought this house 10 years ago it took an hour). I cannot do both the aqua therapy and mowing the grass. I think it will be good because I will get more exercise done.

Scott, USA
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Pts Arl 22, 2008 8:57 pm Mesaj konusu:

4) LDN-I have MS but walking & driving my car again - Bill

LDN since July 2005
- story submitted March 2006
- story updated - August 2006
- story updated – July 2007
- story updated – July 2008 (3yrs on LDN)

SPECIFICS:

DIAGNOSED
- 1998 - Relapsing Remitting Multiple Sclerosis (RRMS)
- 2002 - Secondary Progressive Multiple Sclerosis (SPMS)

MEDICATION (pre LDN)

- Feb 1998 to Aug 2001 - Avonex
- Feb 1999 to Feb 2000 - Copaxone AND Avonex taken together
- Mar 2002 to June 2005 - Rebif
- Sept,2001 to Feb 2002 – Cytoxan (chemotherapy)
- Aug 2001 plasma exchange for eleven days (first infusion was in June, 1998)
- 2001 to 2005 - multiple infusions of Solumedrol IV steroids (at least four infusions a year before LDN)
- Gabapentin (Neurontin) x 3 per day 300mg
- Clonazepam (Klonopin) x 1 at bedtime 1mg
- Effexor XR x 1 twice per day 37.5mg
- Aricept x 1 a day 10mg
- Provigil x 1 a day 100mg
- Flomax x 1 a day 0.4mg
- Singulair x 1 a day 10mg
- Baclofen x 3 per day 10mg
- Potassium CL 10 MEQ CAP x 1 a day 10 MEQ CAP
- Furosemide (Lasix) x 1 a day 40mg

MEDICATION (post LDN)

- Jul 2005 to present – 3mg Low Dose Naltrexone (LDN)

LDN DOSE & TYPE

a) Dose – July 2005 - 1.5mg for 1 week, then 3mg thereafter. I stopped taking Rebif at the same time.
b) Time - I take the Naltrexone between 10pm and 2am each day
c) Type – Compounded capsules with pure naltrexone powder and Avicel filler.

MEDICATION OTHER (post LDN)

- Jul 2005 to present - 10 mg of baclofen, twice a day

SUPPLEMENTS

- Jul 2008 to present - one multiple vitamin daily

DIET

– average, no particular diet

EXERCISE & INTERESTS- walking, lifting light weights, and abdominal exercises, landscaping, President of Local Beautification Council, Member of Local Tree Commission

My Story – March 2006

I am 56 years old. I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS) in 1998, and upgraded to Secondary Progressive (SPMS) in 2002. My chief symptoms are (were) extreme mixed sleep apnoea, chronic obstructive pulmonary disease (COPD), inability to walk, total deafness in my left ear, and inability to concentrate for any period of time.

I have been treated with Avonex, Copaxone, and Rebif of the ABCR drugs, chemotherapy (Cytoxan, plasma exchange, as well as many, many sessions of IV steroids (Solumedrol).

As of June, 2005, I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise.

I had also ballooned in weight to 289 pounds. Two of the top neurologists in Birmingham consulted and agreed that, while continuing on Rebif, I should begin taking a week of IV steroids every three months, regardless of my condition.

I did not feel that the steroids were offering enough positive results any longer, and I did not want to take any more. I asked if they would mind my getting an alternate opinion from another neurologist. They agreed.

My new neuro re-ran all of the standard MS tests, including magnetic resonance images (MRIs). After studying the results, she suggested I stay on the Rebif and see what the next two months showed with regard to flares or episodes, then to probably go back on chemotherapy. I asked her, at that time, if she would prescribe a drug therapy I'd read of - Naltrexone - in low doses (LDN).

I had read a great deal about LDN and talked to a number of MS sufferers who had improved with the use of LDN. She said she had never prescribed it but had also read a lot about it. She agreed to prescribe it.

I began around the first of July 2005 with 1.5 mg of Naltrexone taken in one dose per day for the first week. I then increased to one 3.0 mg dose per day. I stopped taking the Rebif at the same time.

While I did not notice any symptom improvement for the first three months, I also had NO flares either. But, after around three months I began to notice small improvements - my breathing was improving - I could take time off from the oxygen for extended periods of time - the strength in my legs and arms was improving - I began to be able to take short walks with a walker - then was able to take longer walks - then upgraded from my wheelchair to a cane - then actually walked to the bathroom without assistance! My sleep began to improve as well.

My improvement continued incrementally. When I went for my six-month check-up with my neuro, I did not even take my cane, and I blew away my neuro by ace-ing all the tests.

I couldn't drive a car for four years. I am now driving again and I'm walking without any aid or assistance. My weight has dropped to 232 pounds. I hope to get back to my target weight of 195 pounds by year's end.

I attribute my miraculous improvement to LDN, attitude, faith, and my new neurologist's willingness to prescribe LDN for me.

The only real dietary change I have made is to make water my primary liquid of choice.

I recently had surgery for an unrelated problem. I was half expecting to get an MS flare up but am very pleased to say I didn't and recovery is on schedule. After my check-up next week, I'm planning to begin an exercise schedule involving walking, lifting light weights, and abdominal exercises, and I might even get started on some long overdue yard work!

I wish to acknowledge and thank Dr Bernard Bihari for his groundbreaking work. Clearly I was on a downhill slide before I learned of his Low Dose Naltrexone (LDN) drug therapy.

I realize that money and profits are the motivation for initiating studies to have LDN approved for treatment of MS, as well as ALS, Alzheimer's, Parkinson's, HIV, AIDS, Cancer, etc. With that in mind, and knowing that the standard treatment for MS, the ABCR drugs, all cost insurance companies and/or patients in excess of $1000.00 per month, I do not understand why insurance companies are not initiating these studies themselves.

I also do not understand why, if the "Mission Statement" of the National MS Society is to "find a cure for MS," THEY are not funding these studies.

UPDATE: July, 2007

I continue to do very well on LDN. I cannot know how long my good fortunes in health will continue, so I am trying to make the most of it while I can. I am doing landscape consultation for our city, finishing a backyard landscape project of my own that I began last summer, and I'm doing some landscape design work for a local contractor.

I still talk to people from all over the country about LDN and do volunteer work here, too. By the way, last summer, while working on my backyard, my ladder tipped over, and I badly dislocated my left ring finger. It was in a cast for a couple of months. I built the fence, the pergola, and planted all the shrubs! Though it has taken me much longer than it once would have, I never thought I would be able to undertake such again. I'm planning on attending the conference in Tennessee this October (2007).

UPDATE: July, 2008 – 3 years on LDN

I continue to do well on 3mg of LDN daily. It has been three years since my last exacerbation (before LDN). I still find it hard to believe how much my quality of life has improved because of LDN.

Bill, Mar ‘06 USA

“I was on oxygen 24/7, wheelchair bound, having a flair of my MS on an average of once a month, and doctors had told me that my breathing difficulties, caused by the MS, would ultimately result in my demise.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Sal Arl 23, 2008 2:23 am Mesaj konusu:

5) LDN-Improvement was gradual and subtle - Julia

LDN since August 2005
- story submitted November 2005
- story updated August 2007
- story updated July 2008 (3yrs on LDN)

SPECIFICS

DIAGNOSED
- Apr 2005 - Relapsing Remitting Multiple Sclerosis (RRMS)

MEDICATION (pre LDN)
- none

MEDICATION (post LDN)
- Aug 2005 to Jun 2006 – 3.5mg Low Dose Naltrexone (LDN)
(NB I suffered a relapse between March and June 2006. Initially, I felt the LDN wasn’t as effective as it had been and changed to the liquid version. However; the relapse occurred during a particularly stressful period for me (relationship,money, moving house) so that may have been the catalyst.
- Jun 2006 to Nov 2007 – 2.5ml to 3ml (varied) Pre-prepared liquid Low Dose Naltrexone (LDN) from Glasgow
- Nov 2007 to present – 3mg Low Dose Naltrexone (LDN)

DOSE & TYPE
a) Dose – 3mg Low Dose Naltrexone (LDN)
b) Time - I take the Naltrexone at bedtime (not earlier than 9pm)
c) Type – capsules compounded with avicel filler from Dicksons

SUPPLEMENTS
- 1 x multivitamin (multibionta or Pharmaton from Supermarket)

DIET
- nothing special, everything in moderation

EXERCISE
- work, everyday activities

My Story – November 2005

I used to have a great sense of humour, always had my finger in many pies and generally lived life and was rarely still for 10 minutes. Then I got multiple sclerosis. I didn’t want to go out, meet people, or do anything. If problems arose, I would hide from them and rather let someone else sort it............not like me at all. I had to have someone with me everywhere I went. I was afraid of falling, getting lost or confused and several times forgot entirely what I went out for in the beginning. It got so bad I didn’t go out for nearly a year.

As my Mum has Relapsing Remitting MS, my diagnosis was expected, so I had a chance to read up on the offered disease modifying drugs (dmd's); Interferon alpha and beta, Copaxone, Avonex, and Rebif; and frankly none appealed to me because of the side effects. Whilst doing some digging, I came across something in the Lancet medical journal which says the dmd's on offer aren't working as expected, etc.

I discussed this with my neurologist when he gave me my diagnosis in April 05 and said I qualified for Interferon. Although he was surprised I knew about the article in the Lancet, he did discuss it honestly and said taking the Interferon was catch 22 as yes, they knew the dmd's on offer weren’t working as was hoped in stopping relapses and further progression of MS. He admitted the success rates weren’t as expected when they were first introduced as an option to treat MS.

I said there was no way I was going on Interferon and would look for something myself. I wanted to feel better, not worse. He agreed and I was given 3 months to go away and look for an alternative before going back to see him again.

My search led me to a treatment involving ‘low doses of Naltrexone’ (LDN). It’s a tablet taken at bedtime which works with your own body’s natural endorphins. As at 1 November ’05, I’ve been taking LDN for three months.

I’ve never felt so well. In fact I feel like the old me! I can’t begin to describe the difference after nearly 4 years of feeling unwell and a list of over 86 symptoms. Initially, the improvement was gradual and subtle - you were aware something was better but couldn’t quite say what or why. Then you think back three months and remember how you were. That’s when you realise how much of a difference LDN has made.

Some GP's will prescribe LDN on the NHS in the UK. As for me, my GP and Neuro said a flat ‘no’, so I just looked ‘em in the eye and said I would buy it myself and take it anyway. My neurologist said it was my body and whilst he couldn’t agree or disagree with my decision, it was my body and I had to do what I thought was best.

Thank God I ignored the drugs they were trying to get me to take, made my own decision, and went on LDN!! Once I’d made my mind up, I had the tablets within 4 days and noticed an improvement from day one. The only side effects I experienced were a slight worsening of existing symptoms i.e. more leg spasms and restless legs at night, a couple of vivid dreams and constipation for the first week.

My symptoms got worse for about 3 weeks but I was well aware that might happen - I stuck with it - then suddenly the worsening eased off and my symptoms got better. After feeling rough, achy and stiff every morning (almost like I was coming down with the flu), I noticed a change at weeks 3-4. I suddenly felt really good in the afternoon and have stayed pretty much the same since.

I saw the neurologist a month after starting LDN and he asked me if I was the same woman. He was sufficiently impressed to say he would prescribe it on the NHS in future and send my GP a letter telling him he can see its benefits, so the GP should be able to prescribe it. My friends and family have seen the difference too.

I have no horrible mood swings - I am alert, not confused - better humour - better memory - better concentration - better sleep - far less fatigue - from 5 trips to the loo down to none or one - legs are better and they don’t ache or twitch so much - shakes in the morning have gone - better appetite - taste has returned. I feel better all round, ready to face the day and not hide. Yes, I still get blips when I’ve overdone it but I guess I hate wasting all this new found energy - so I only have myself to blame and frankly, I feel its a small price to pay for something that has given me so much back.

UPDATE: August, 2006

I’ve been taking LDN for one year now. My only update is that I am now on the liquid LDN from Glasgow (month 2) at 2.5ml and have no reason to up that dose, as I'm doing very well on it (I was previously on 3.5mg capsules from Martindales). I changed to liquid because Martindales was taking too long to deliver and was more expensive for the NHS. £93 per 60 tablets compared with around £45 for 3 months from Dicksons in Glasgow.

The last couple of batches of tablets didn't seem to have the same effect but the jury is out on whether it was something to do with the filler. I will probably never know for sure. I find the liquid easier and the 2.5ml suits me well. I vary between 2.5ml - 3ml. It also gets delivered to my door, so no trips back and forth to the chemists, I can just get a repeat over the phone now and have it delivered to my home.

After suffering a relapse from March to early June, I saw the neuro in June 06. The relapse was put down to overdoing things after splitting with a partner, moving house and money worries. The neuro will see me in 6 months then if all is the same (as I was back to the usual me again) I will go onto yearly appointments. I felt at times that the LDN was trying to pull my system back in line. Some days I felt okay and the next I was awful but gradually I've felt well again and had no problems since. I didn't need to take steroids.

I now have a part-time job, 16 hours per week and am managing that okay. The only downside I can see is that LDN doesn't help with persistent neuropathic pains but overall, I'm very pleased and will continue taking LDN, for the rest of my life if necessary.

If LDN's claim to fame is to stop progression and relapses, then the side benefits are indeed an extra bonus. I would urge anyone to try this drug and give their honest opinion, as honesty is what it’s all about. Information on LDN spreads by word of mouth and I would recommend it to anyone.

UPDATE: July, 2007

My LDN carries on being a success. I changed GP's and am at present waiting for the paperwork to catch up from the old surgery, which has the letter from my Neuro saying he is happy for my GP to prescribe it on the NHS. As my new GP hasn't ever prescribed LDN, she feels this is neccessary. Unfortunately for me, my timing was not on the ball and I found myself without LDN for 2 and a half weeks.

The brain fog, fatigue and bowel problems came back, along with a loss of appetite and general off colour feeling. I managed to get an emergency bottle from Dicksons and within 2 days of restarting it, I was back to how I was before. LDN is not a cure all. It helps me in certain areas, mainly bladder (don't have to go every 5 minutes), bowel (keeps me regular and stops diarrhoea), and brain fog (I can think clearly and complete tasks and remember things). I feel up to doing many things with the added energy I believe LDN provides - things I just wouldn't attempt otherwise, such as trips to town and walking the dog.

This year (2007) has been very stressful from the start. I still believe LDN plays a major part in keeping me on an even keel. The two weeks without it, certainly showed me what things would be like if I wasnt taking it. I still have "blips" but remembering what I was like without the LDN certainly makes me wonder what those "blips" would have been like if I'd never started LDN. I would say I'm very happy to be on LDN since Sept 2005 and if I had to pay for it instead of getting it on the NHS, then I would still take LDN without hesitation.

UPDATE: July, 2008 – 3 years on LDN

I moved house again in January and my partner moved in with me in May. Lots of work on the house and garden in progress and I had a car accident that wrote the car off in late May.

I’ve also been trying to set up a new business as a courier, so I have lots going on. Apart from periods of stiffness and fatigue, everything else is great and (fingers crossed) no relapse since 2007. I'm back on the3mg capsules from Dicksons as it’s easier to transport around and my GP is still happy to prescribe it on the NHS.

Julia, Nov ‘05 UK

“Initially, the improvement was gradual and subtle – you were aware something was better but couldn’t quite say what or why. Then you think back three months and remember how you were. That’s when you realise how much of a difference LDN has made.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Cum Arl 26, 2008 6:03 pm Mesaj konusu:

6) LDN allows me to work with MS - Neil

LDN since May 2004

- story submitted October 2005
- story updated September 2006
- story updated August 2007
- story updated July 2008 (4+yrs on LDN)

SPECIFICS

DIAGNOSIS:
- 1989 - Multiple Sclerosis

MEDICATION (pre LDN)
- 1997 - Interferons: I was on them back in 1997 and all they did for me was to make me 10 times worse. Preinterferons
I was a 14 handicapper at golf … post-interferons I was in a wheelchair.

MEDICATION (post LDN)
- May 2004 to present - 4.0 ml Low Dose Naltrexone (LDN)

LDN DOSE & TYPE
a) Dose – 4ml Low Dose Naltrexone (LDN) liquid preparation
b) Time - nightly, between 10pm and 2am
c) Type - I make up a batch of liquid LDN using 50ml sterile cool water and one 50mg naltrexone tablet. I keep it in the
fridge. I shake the bottle well and use a syringe to draw up a 4ml dose once a day.

SUPPLEMENTS
- Jul 2008 - Yoghurt-based probiotic drinks to aid digestion

DIET
- average, nothing strict.
- Jul 2008 - My diet has improved. I’ve been buying quality meats and vegetables

EXERCISE or INTERESTS
- I was working four days on, four days off (May 1999-May 2007), the rest of the time working at home on the
computer = seven days on, so no time for hobbies or interests.

MY STORY – October 2005
This is my story on low-dose naltrexone, I am not the best typist in the world, and I am using a program called Dragon NaturallySpeaking, which is a voice recognition program so I hope everything is okay and please feel free to make any changes.

I read about low-dose naltrexone on the Internet, pre-May 2004. What got my interests up was an article written by an undergraduate, called the unprofitable cure and hating drug companies and doctors, I chose to read it and pay attention to its content. That made me start to look into it with more depth, and I discovered there was no information on it in Australia which made me look even further.

It was by chance that I stumbled onto Dr George O'Neil, the local heroin doctor in Perth, and he distributes naltrexone to the addicts. I was doing a double up in a taxi, with his best friend, and things snowballed from there after I explained LDN to them.

After a meeting with George O'Neill, I decided to start taking LDN as there are no harmful side-effects, and I could see it doing nothing but good for me. After the first dosage I noticed I had greater mobility, less fatigue, better speech, and overall I felt better. The people at work, noticed the immediate change in my abilities to be able to maintain my composure and dexterity better and to do the job with more confidence.

I am classed as an emergency worker in my position, because I control the operations of the Perth tunnel, so my ability to be able to handle pressure is paramount to my ability to be able to do my job. For that reason alone it was worth the gamble to take low-dose naltrexone and see if it helped in any way, which it did.

I was told by a neurologist that I could only work 12 hours a week, which is for me a load of garbage because I need to continue to work to keep my brain active and my self-esteem. A working week for me encompasses four 12 hours shifts - two days 10 a.m. to 10 p.m., two nights 10 p.m. to 10 a.m. with no breaks - and I have been doing this since day one, 5 1/2 years ago.

I sit at eight computers for 12 hours straight staring at $1 million worth of monitors and watch 90,000 cars per day travel through the 1.6 km of tube. If there is a crash or a disturbance down below, it is up to me to organise what needs to be done, eg; tow trucks, police, ambulance, fire department, RAC or a simple phone call for a motorist; so as you can see low-dose naltrexone, kept me working. I have got to have my wits about me to pick up any discrepancies in the flow of traffic so my brain needs to be in gear and low-dose naltrexone does it for me.

I’ve been on interferons. I was on them back in 1997 and all they did for me was to make me 10 times worse. Pre-interferons I was a 14 handicapper at golf … post-interferons I was in a wheelchair … thus my hatred of drug companies and my distrust of the medical fraternity.

I saw a neurologist six months ago - the first one I had seen for three years. He had an open-mind to LDN and is looking forward to seeing what improvements LDN has done for me. My original neurologist was so stupid that he once said, “The only problem Neil has is showering so take him out in the back yard and spray him down with a hose.”. If I could have walked over to him, I would have broken his jaw. How insensitive can one person be?

I was a very athletic person at 6 foot 2 inches and 14 stone. I’ve played regular sport all of my life so to get a disease like MS gutted me. Pre-MS I worked in the music industry for 10 years as a roadie. I am now a shell of the man I once was and for me that alone was very hard to stomach, but to have the so-called experts belittle me as well really got my goat up.

According to everyone I know I haven’t changed a bit but according to me, I’ve changed a lot and that was the hardest aspect to get used to. I still haven’t come to terms with it but that’s probably been fortunate in a way: I didn’t ‘resign’ myself to MS. I rose to the challenge, researched, and found out about LDN.

One of the best things about low-dose naltrexone is the price. At six dollars Australian per tablet (which lasts approximately 2 1/2 weeks) you can afford to continue medication whether it’s on the pharmaceutical benefits scheme (PBS) or not. So far as I know I’m the only person here in Perth that uses this medication. If there is anyone else here in Perth using LDN I would love to know and swap notes with them.

The local MS society over here does bugger all to check these things out so I do not even worry about speaking to them about it. It appears too difficult for them to look on the Internet to check it out so I don’t trust them at all. While on the price of drugs, it costs approximately $1000 Australian per month (Oct 05) for someone to be on interferons for which they get the luxury of sticking a needle in themselves once every two
days. I’m no expert, but doing the math it makes sense to me to go with the cheaper and better option!

If anybody out there has any reservations about low-dose naltrexone and its side-effects I can say there are none that I have experienced, whilst I experienced multiple side-effects whilst on crab drugs. $12 Australian compared to $1000 Australian per month makes sense to me. Politicians don’t seem to be prioritising what’s right for the patient and the economy, otherwise, the system would not be commercially driven.

As I stated at the beginning of this story I’m using a program called Dragon NaturallySpeaking version 8 and I’ve typed this entire letter at 160 words per minute without touching a keyboard or a mouse! This program makes using a computer very simple and I cannot recommend it highly enough. It took me five minutes of talking for the program to store my vocal patterns on its database.!!!!!!!

STORY UPDATE: 18 September, 2006

I now work seven days a week with four days off in-between at the tunnel. Recent changes to industrial relations laws in Australia added unnecessary stress to my workload. I'm the main breadwinner, supporting one wife and two children in private school.

My employer can now sack without having to build a case so I have had to be especially careful and protect myself as best I can. I wasn't in a union but joined recently because I thought I might need that support. My employer then sent me a warning letter without reason. So life has been pretty tough this year looking over my shoulder all the time and working seven days a week - a bad year stress-wise.

I'm still on the low-dose naltrexone and I dare say if I wasn't I would be in hospital. I don't know if it is doing anything as I seem to have plateau-ed for the last six months (no further symptom improvement) but the amount of stress I've been under would have something to do with that. I'm trying not to dwell on what could lie ahead, but with employers these days more concerned with profit than people, it's hard not to.

STORY UPDATE: 7 August, 2007

Things have changed just a little bit. I no longer have a very stressful work situation. Compliments of Australia’s new industrial relations laws, my employer sacked me with no warning for going to the toilet on Easter Sunday!

I'm still taking the low-dose naltrexone but because my life has got even more stressful I think it is plateauing a little bit.

What has changed is that they pulled an occupational health and safety issue on me for using the scooter at work, so I had to move to an automatic wheelchair. The only movement you use is your two fingers on your right hand and that has had a detrimental effect to my quality of life and health - so even though the hospital thought they were helping me out, this change has actually been detrimental.

I hate to be the bearer of bad tidings, but things aren't getting any better for me, getting the sack will probably cost me my house, any chance of a job and my family, because I don't think my wife and children will hang around.

To give you a full indication of what happened:

(1) I was terminated because I broke a procedure! I rang my wife who was half an hour way instead of ringing my boss who was two hours away, broken procedure? Common sense I would have called it.

(2) Sitting next to me in the meeting was the union and there was absolutely nothing they could do, so basically I have no rights whatsoever.

LDN would still allow me to work with MS, but my concern now is getting another job.

STORY UPDATE: July, 2008 – 4+ years on LDN

Things here have changed a little bit. As you know I lost my job, and as I said earlier, everything that could happen did.

My wife left me. She took the children and I saw them for the first time in six months two weeks ago.

I’ve been dragged through the legal system for the last six months by the wife for settlement of the property, which has been now been sold.

Stress has been incredible during this period and if it was not for low-dose naltrexone, I think I would be in hospital. So as you can see things have not been the best, I started to take the pill form of a low-dose naltrexone, but that did not seem to work as well as the liquid form so I reverted back to the liquid.

The only problem I have now is my bowels due to the fact that I got terminated for going to the toilet and psychologically, that has had a major impact on my system, but I am slowly getting over it and getting back to a regular routine. In about six weeks, the property settlement will be over and I will be able to buy a unit and modify it to suit my needs which will make life a lot easier because at the moment I am in a totally disabled, unfriendly accommodation environment where I have to shower in a 1 foot by 1 foot area and have been doing
so for four months.

The disability services commission have been fantastic in getting me accommodation and care but according to the combined application process, I am not disabled enough to require carers? My body does not work at all any more and the only movable part is my right hand so you tell me!

I don't like to whinge about things so I am doing what I normally do, just getting on with life.

There seem to be a few people in Western Australia using low dose naltrexone but I don't know who they are and I have made no contact with them, but the practitioner at the heroin clinic rang me and asked me where I was able to get compound pills.

Since I have moved out from the wife and kids I must say that my stress level has decreased and I am now in I am now in a more relaxed frame of mind - as the doctors, lawyers and anyone that gets in my way has found out; you don't mess with a person that has a brain, because they will snap back and I have been enjoying it because I enjoy a good argument and challenge, and most people think that people with multiple sclerosis can't argue, but they are grossly wrong. I hope this is of some value to you and please do not hesitate to use any of this in
any way you can.

Neil, Australia Sept‘06

“I’m still on the low-dose naltrexone and I dare say if I wasn’t I would be in hospital.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Cum Arl 26, 2008 6:36 pm Mesaj konusu:

7) Paul’s MS & LDN story began in 2004 - Aletha

LDN since July 2005
- story submitted May 2007
- story updated August 2007
- story updated July 2008 (3yrs on LDN)

SPECIFICS

DIAGNOSIS
- 2004 - Multiple Sclerosis

MEDICATION (pre LDN)
- no standard MS medication

MEDICATION (post LDN)
- Jul 2005 to May 2008 - 3mg Low Dose Naltrexone (LDN)
- May 2008 to present - 4.5mg Low Dose Naltrexone (LDN)

LDN DOSE & TYPE
a) Dose - 4.5mg Low Dose Naltrexone (LDN)
b) Time - Paul takes his Naltrexone between 9pm and 3am each day
c) Type - Compounded capsules with pure Naltrexone powder and Avicel
filler.

DIET
- Paul changed his diet. He lowered his fat intake (minimal red meat). No dairy. No wheat products.
- May 2008 - Paul is eliminating salt/sodium from his diet in response to recent high blood pressure.

SUPPLEMENTS
- Oct 2004 to present - as follows:
Q-10 75mg
B-12 500mg
Lecithin 1200mg
Alpha Lipoic Acid 600mg
Coral Calcium with vitamin D and Magnesium
Curcumin Complex (Swanson brand with Bioperine)
Evening Primrose Oil 1000mg
Flaxseed Oil 1000mg
Echinacea-Goldenseal
Either Fish oil, Salmon oil or Cod Liver oil
Benfotiamine-V at 150mg (a non-toxic form of Vitamin B1)
- Jan 2005 - the following was added:
DL-Phenylalanine (DLPA) - 1 x 500mg morning, 1 x 500mg afternoon (empty stomach, half hour before eating)
- Feb 2007 - the following were added or changed:
B complex
Niacin 500mg
Zinc 50mg
1 x 500mg DL-Phenylalanine (DLPA) per day, morning, half hour before eating (After a while Paul found one morning pill
was sufficient.)
- May 2008 - the following was changed;
1 x 500mg DL-Phenylalanine (DLPA) - scaled back to only once a week.

ACTIVITIES OR EXERCISE
- May 2007 - regular sports.
- May 2008 - Paul surfs about 4 days a week and he plays tennis, kayaks, and works out the other days.

HOBBIES & INTERESTS
- Regular sport

OUR STORY - May 2007

When nearing the end of my husbands 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 property 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. Things began to fall into place in a way that seemed almost orchestrated.

We came to find out that a friend of ours was in the process of moving and had taken a job as a mortgage lender near the area that we were looking in and she was happy to scout at houses for us with the realtor.

Within a few weeks she found a house that met our criteria and she had the loan papers underway. Once we felt things were going very well 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. (NB The term CRAB is often used as an acronym for the four main MS drugs - Copaxone, Rebif, Avonex, and Betaseron.)

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 and 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 was the stories of how people were getting 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 aprescription 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 cannot understand how this many people could be wrong. I decided we needed to take my husbands health into our own hands. The following week I made an appointment with the doctor in New York that originally thought through the idea of administering this drug in alow dosage for people with auto-immune disorders. Dr Bihari said that most neurologists are concerned about giving LDN a try because it up-regulates the patients autoimmune systems which they are concerned might then aid the immune system in further hurting and attacking the body.

Three out of the four CRAB drugs are immune suppressants (Copaxone being the only one that does not suppress the immune system). But as it turns out once the immune system is up-regulated it actually goesi nto gear and remembers how to behave. 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 nearly two 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.

Incidentally, Paul's neuro worried him by saying that his follow-up MRI had a suspicious new area and that he should get on one of the Crab meds. She did not know Paul had started LDN a few months earlier and she didnot even notice the huge differences in his symptoms. Later, Dr Bihari got a copy of the same MRI's and called Paul to congratulate him because the original lesion was no longer enhancing (the other doctor did not say a thing about that).

When Paul asked about the suspicious new area, Dr. Bihari told him to read the written report that accompanied the MRI because it said the suspicious new area was just a glitch in the slide. Paul low and behold that is exactly what it said!

What I have learned from being on the Yahoo LDN chat site (groups.yahoo.com /group/lowdosenaltrexone) is that about 85% of people with various auto-immune diseases have lack of progression and/or some form ofs ymptom 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.

UPDATE: August, 2007

Paul continues to do exceptionally well. He has not had any re-occurrence of symptoms and he continues to do one to two sports per day. This year we plan on going on a trip to France for two weeks, a trip to Hawaii for a week and most importantly to the LDN conference in Tennessee. We know in our hearts that it would not be possible for Paul to be doing all of this if it were not for LDN. We are eternally grateful to all of the wonderful doctors, pharmacists and the most wonderful group of helpful and giving people I have ever met from the LDN Yahoo chat site. They have all made it possible for my husband to have his life back, and me to have my husband back. Bless them all.

UPDATE: July, 2008 – 3 years on LDN

Paul continues to do well with LDN. He no longer needs the DLPA every day and has scaled this back to once a week. There have been no significant changes in Paul's MS since last year. His only symptom is areas of numbness and tingling in his palms.

Paul recently found out he has high blood pressure, so Paul is working on changing his diet to eliminate salt and sodium intake.

Aletha, USA May ‘07

“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.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Cum Arl 26, 2008 6:42 pm Mesaj konusu:

8) LDN 4 me - Maurey

LDN since August 2007
- story submitted April 2008
- story updated July 2008 (1yr on LDN)

SPECIFICS

DIAGNOSIS

- May 2007 – Optic Neuritis
- July 2007- Multiple Sclerosis
- January 2008 - Neurologist report says "may turn out to be benign MS"

MEDICATION/TREATMENT (OTHER)
- May 2007- 5 days 250mg oral Prednisone for optic neuritis

TESTS:
- July 2007 – Neurologist ordered MRIs of brain, cervical, thoracic, and lumbar regions - pages of blood work - lumbar puncture - Visual Evoked Potential - Chest x ray - Sensory evoked potential – Neuro-ophthalmology Eye Exam – test for Lyme disease

MEDICATION (LDN)
- Aug 2007 to Sept 2007 - 3mg Low Dose Naltrexone (LDN) nightly
- Sept 2007 to present - 4.5mg Low Dose Naltrexone (LDN) nightly

LDN - DOSE & TYPE
a) Dose – 4.5mg Low Dose Naltrexone (LDN)
b) Time - I take my Naltrexone around 10 pm each night.
c) Type - my 1.5mg capsules are compounded by Skip's Pharmacy with pure Naltrexone powder and avicel filler.

DIET
- Since July 2007 as follows:
No dairy, very little wheat or sugar. Little saturated fats.
Breakfast - Smoothie with banana, berries, apple, whey protein, rice milk

SUPPLEMENTS
- Since July 2007 as follows:
Fish oil capsules
Multiple vitamin
B Complex
Calcium/Magnesium/D
Vitamin E
Grapeseed Extract and Bromelaine when I feel inflammatory or "MS ey"
UltraInflamx powder "Medical Food" by Metagenics in Rice Milk or Almond Milk at night with my vitamins and LDN.

ACTIVITIES & EXERCISE
- April 2008 as follows:
I raise Welsh Ponies so most of my exercise is practical; stacking hay, cleaning the paddock, and training ponies.Running is a challenge, but I work to lengthen my stride and increase the distance by running with ponies. Lots of stretching. I have an exercise ball chair at home and at work. The chairs come with stretching exercises. Yoga is new to me. I use the Rodney Ye PM yoga DVD to aid sleep and help with balance.

MY STORY – April 2008

I was diagnosed with MS in July '07. Looking back before my major episode, I had strong symptoms that I denied for 5 years or so. In July 2007 I couldn't climb steps, I dragged my legs to get around, had no central vision in one eye, cried for no reason, had slurred speech and couldn't find the words for my thoughts, and I was so dizzy I walked into walls.

I started LDN in August '07, right after receiving my diagnosis. The first month I took 3mg, and I’ve been taking 4.5mg ever since. The greatest improvement in my symptoms occurred in the first 30 days. Improvement is slower now, so I keep a diary and check in with myself every 3 months. I haven't been disappointed yet. Once in a while if my legs feel stiff I drop back to 3 mg for a day.

I follow most diet and supplement recommendations related to my condition. I also have high cholesterol but my new diet has reduced my bad cholesterol by 20 points and increased my good by 7 – a nice side benefit.

I have 80% of my leg function back, no more dizzy spells, and no more speech problems. I have some loss of color vision in one eye, but I can see. My MS taps me on the shoulder every now and then, but I no longer think about it 24x7. I continue to work on my balance and leg strength with various activities.

At my 6-month check up with the same neurologist, he gave me a lecture on LDN not being FDA approved and strongly recommended Rebif to slow the progression. I asked him how he could possibly recommend expensive painful injections when I'm doing so well on LDN.

My LDN was prescribed by my GP who said "Why not? It makes perfect sense, won't hurt you, and the CRAB drugs are limited in their effectiveness."

My Neuro report came in the mail. He must have done some thinking after our visit. It reads, "The patient has done quite well since I saw her in July. She has had no attacks of multiple sclerosis. She takes low dose Naltrexone. She gets that medication through her primary care provider. She is aware that there is no evidence that this is helpful in multiple sclerosis. She is not interested in going on Interferon medication at this time and I do not think that it is necessary at this point either. It may turn out that she has benign multiple sclerosis."

I say, that if it is benign, it's only because of LDN, diet and exercise. I do believe attitude plays a big role. I'm putting a son through college and have 5 horses that must be fed and cared for. I cannot be disabled and will find the way.

That's my story and I'm sticking to it.

UPDATE: July, 2008 – 1 Year on LDN

Certainly! I've read through the specifics section, and all remains the same. Still doing very well on LDN - no further progression or attacks, no medical information to report. Still following the same routine, LDN, supplements and exercise. No episodes, no progression, slow but steady improvement in leg strength and balance. Tolerating the heat of summer much better than last year.

Maurey, USA Apr‘08

“My Neuro report came in the mail. “ … It may turn out that she has benign multiple sclerosis.” I say, that if it is benign, it’s only because of LDN, diet and exercise.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Cum Arl 26, 2008 6:48 pm Mesaj konusu:

9) LDN-MS & me - Jackie

LDN since April 2004
- story submitted October 2005
- story updated Jul 2008 (4yrs on LDN)

SPECIFICS

DIAGNOSED
- Apr 1980 - Relapsing Remitting Multiple Sclerosis (RRMS)
- 1995 - Primary Progressive Multiple Sclerosis (PPMS)

MEDICATION (pre LDN)
- 1993 to Aug 2004 - detrusitol LA
- 2003 (approx 9 mths) - beta interferon
- 2003 (approx 1 mth) - baclofen (horrible stuff, I'd rather deal with the spacticity)

MEDICATION (post LDN)
- Apr 2004 to May 2004 - 3mg Low Dose Naltrexone (LDN)
- May 2004 to present - 4.5 mg Low Dose Naltrexone (LDN)

LDN DOSE & TYPE
a) Dose - 4.5mg Low Dose Naltrexone (LDN)
b) Time - bedtime, between 10.00pm and 11.30pm
c) Type - 4.5 mg capsules compounded by Skips Pharmacy (not sure about the filler)

SUPPLEMENTS
- May 2008 - I take Dr Gilhooly's recommended MS supplements, plus fish oil (also from Dr Gilhooly)

DIET
- May 2008 - I eat a generally healthy diet, lots of fruit and veg, fish, not much red meat, no dairy except a very small amount of skimmed milk, limited caffeinated drinks - 1 or 2 cups of tea a day, 2 cups of coffee a week. A fair amount of wine, mainly red - no other alcoholic drinks. No fizzy drinks at all, no sugar, no cakes biscuits etc.

EXERCISE OR INTERESTS
- art and creative software

MY STORY – October 2005

When I first started taking LDN I also began a daily journal to record my symptoms and any changes I observed.

Looking back over it prior to starting this piece, I was impressed by how quickly things seemed to change for me. Taking LDN has definitely made a significant difference to my quality of life. Some of its effects have taken rather longer to become apparent than others but the two most immediate results, there before my eyes and still evident, were a significant increase in stamina and a welcome improvement in my sleep pattern.

Since the mid 1990s when my MS became progressive, this has been the first winter I have survived without deterioration in my condition.

My bladder has improved so much in the past year that I no longer take any medication for it. Spasticity has also decreased and I am a little more mobile. I have maintained a standard over a timed walk for the past seven months, having gradually improved to that level after starting LDN.

I am hopeful that my condition has stabilized. My outlook has certainly improved and I am working hard in my studio. I only regret that I did not discover LDN sooner, but am thankful to have at last found something that seems to work for me.

UPDATE: July, 2008 - 4 years on LDN

Prior to beginning this up-date I re-read my previous, 2005, piece on my experience of taking LDN (low dose naltrexone) for progressive M.S.

What struck me most strongly was the positive tone of the article and the sense that the drug had given me hope for the future despite a rather gloomy prognosis. I felt then that LDN had improved a number of my symptoms and was hopeful that that improvement would be sustained; and by and large, it has been.

I am still taking LDN - four years now and counting, during which time I would say that my M.S. has stabilised. It would be wrong to assume that the disease has not progressed at all - I have an increase in spasticity in my right hand and arm for instance; but that increase has been very gradual and is fairly slight.

The important thing is that I am still on my feet - despite a badly fractured ankle a couple of years ago, and continue to enjoy life.

I am still working as an artist. See http://homepage.mac.com/jackie.smith/PhotoAlbum2.html for images and information from my last exhibition and am currently teaching myself how to use Adobe Illustrator. A thankless task!

I now walk with the aid of an FES stimulator (see http://www.salisburyfes.com), which has helped enormously with my characteristic M.S. dropped foot. I still drive with the addition of hand controls to my car and remain optimistic for the future.

It is impossible to quantify what effect LDN has had in maintaining my condition, perhaps when trials at last take place on this therapy we might better understand its potential to assist in M.S. management. My belief isthat it has been of considerable benefit and I intend to continue taking it - at least until the cure comes along! Jackie, UK (written whilst in a cast with yet another broken leg)

Jackie is an artist who lives in Perthshire with her partner and their dog.

Sincere thanks to Linda Elsegood, LDN Research Trust, UK (ldnresearchtrust.org) for freely sharing this story with Case Health in October 2005.

“I am still taking LDN – four years now and counting, during which time I would say that my M.S. has stabilised. It would be wrong to assume that the disease has not progressed at all – I have an increase in spasticity in my right hand and arm for instance; but that increase has been very gradual and is fairly slight.”

July‘08
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Cum Arl 26, 2008 7:17 pm Mesaj konusu:

10) MS & LDN since May 2002 – Joyce F

LDN since May 2002
- story submitted 19 November 2003
- story updated August 2006
- story updated August 2007
- story updated July 2008 (6 yrs on LDN)

SPECIFICS

DIAGNOSED
– 1984 - On reflection, first sign was Optic Neuritis
- 1989 - Multiple Sclerosis

MEDICATION (pre LDN)
– nothing to May 2002

MEDICATION (post LDN)
– May 2002 to present - Low Dose Naltrexone (LDN)

LDN DOSE & TYPE
a) Dose – 4.5mg compounded capsule
b) Time – At bedtime, between 10 pm and 2 am
c) Capsule Filler – fast release (not calcium carbonate that can compact)

SUPPLEMENTS
- May 2008 – the following is a complete and current list:
1680mg cranberry capsule twice a day
Super booster softgel once a day (life extension supplement)
2 digestive enzymes twice a day with meals
Super EPA/DHA with Sesame Lignans and Olive Fruit Extract (life extension supplement)
1000 mg Vitamin C x 3 times a day
Mitochondrial Energy Booster capsules 4 in the morning. (This contains Alpha Lipoic Acid 300mg, Acetyl L-Carnitine
1000 mg, Benfotiamine150mg, along with several B vitamins, D3 and chromium)
Gamma E Tocopherol capsule once a day
MSM & glucosamine once a day
1000 mg Chlorella 3 times a day
6 Life Extension Mix Caps twice a day
500 mg DL Phenylalanine once a day
Fuco-Thin 3 capsules 3 times a day (Fucoxanthin)
Evening Primrose Oil 1300 mg once a day
1 Tablespoon of apple cider vinegar with juice
Natural Cellular Defense (zeolite drops) to remove heavy metal
Green tea drops into my morning cup of tea
Mynax 3 tablets, 3 times a day (Calcium EAP product from Koeler, as recommended by a naturopath)
½ teaspoon of freeze dried aloe vera (As recommended by a naturopath)
1 teaspoon of Homozon nightly for colon health
oxygen drops for water
I no longer use the electrical impulse unit
Selenium 200 mcg once a day
Lithium aspartate 5mg once a day
Silica 500mg once a day
1 scoop of a Boku Superfood green powder in a smoothie with 1 tablespoon of coconut oil once a day

DIET
- normal, balanced

EXERCISE
- regularly

MY STORY – as at May 2002

My story starts quite a few years ago when I had an episode of Optic Neuritis. I've had several such attacks that led to a diagnosis of MS. I could never quite understand why I was doing so well with it, for example...very few attacks and almost no permanent physical impairments... this went on for about 10 years or so.

I would have the typical bouts of numbness here and there. I started to go downhill with my balance and walking a few years ago and knew that it was time to research a medication for my MS as I always said that I would when that time came.

There are several clinically tested medications on the market these days for MS but regrettably they are all injectable and come with some potentially bad side effects. I've heard it said that they could possibly help about 30% of the people about 30% of the time. I thought...wow...I don't like those odds, so I searched further and thank God I did because I was able to find the good work of Dr. Bernard Bihari in New York City.

He has been working with LDN or Low Dose Naltrexone for many years with HIV patients on the theory that a lack of endorphins rather then an overactive immune system is the cause of all autoimmune diseases. You see, LDN, when taken once daily causes your body to create 200% to 300% more endorphins, which in turn regulates the immune system back to normal. Hence, no further progression of the MS.

I have been on it for about 18 months now. It is November of 2003 and I started with it in May of 2002. My endorphins have increased again, and I haven't looked back. So far so good.

There is a website dedicated to information about it with regards to MS and a wealth of other diseases like Lupus and Fibromyalgia, ALS and Parkinson’s ......... www.lowdosenaltrexone.org. ..........

Virtually all autoimmune disorders should respond to this therapy. I only have experience with it and my MS.

Dr. Bihari has been doing work with it and cancer for years. Treating people with MS came after he helped a friend’s daughter who suffered with MS.

Naltrexone is an FDA approved drug, but one that has been in existence at a much higher dose of 50 mg for almost 19 years now (as at Nov 03). Therefore, an orphan drug? There is no money to be made by these huge pharmaceutical companies who are the ones that do clinical testing. Any doctor can prescribe it but one must have it compounded down from the original 50mg tablet to a 4.5mg dose.

Several compounders are doing just that and some of them are listed on the website. One such compounder has statistics of many MSers being helped by it and he claims that it is the one medication that he would take if he had MS. One of the things that convinced me to look into this whole thing further was the knowledge that no one is making huge amounts of money from it.

There is some work in finding a doctor to prescribe it for you and then in finding a compounder to make it up for you in a dose of 4.5mg. It must be formulated into a fast release version as well.

Good luck to all who have come here to read my story .... God bless .... Now back to my story.... you see this all makes good sense to me because I never really did start going downhill until I slacked off from my very vigorous aerobic exercise routine a few years back. You see, that is what was producing all those endorphins and I never knew of the connection till now.

Us MSers are always being told that exercise seems to help but I'm certain that most don't know the true reason behind it.

UPDATE: August, 2006

As far as an update. I'm sure that I could but there's not much to tell. People are always asking for an update but I think hmmmmmm how many ways are there to state that there are no MS issues?..lol.

I must admit that I no longer think that the LDN will halt the MS but rather it should slow it down considerably.

The reason I say that is that my legs aren’t as good as they were. My legs would get a little rubbery towards the end of the day. Now my legs get that way soon after waking. My balance seems to be just a tad worse as well so that spells progression to me.

Other than that, as I stated, no real MS issues and as far as I'm concerned, that's great. I lead a pretty normal life here. I have the usual MS issues about making sure that there will not be a lot of walking involved with any activities and such and an occasional day with some vertigo but other than that, nothing different than any others.

Having said that, no one would even know I have MS and indeed, my co-workers still do not know.

It is now just over 4 years on the LDN and I love not having to see any sort of doctors other then the internist that prescribes the LDN for me. I also think it's important that one uses a compounder that is well-versed on how the LDN must be compounded in order for it to work. It must contain fast-release filler because of the mechanism by which it works.

I think that the time has come for the world to be aware of this remarkable therapy. Then, Godspeed to a cure! Until that day comes, I am happy to take my little LDN capsule once a day.

UPDATE: August, 2007

There is really not a whole lot to update. The only change is that I have been tending to just keep getting a bit worse as each year goes on. Nothing major and no attacks really but I know how I was walking and how my balance was just a year or so ago and it just seems to mysteriously get worse. It's hard to explain that really.

The only thing that comes to mind is that I am experimenting with a few things such as taking oxygen products like drops for the water and taking a teaspoon of Homozon nightly for colon cleansing. I take many supplements and have just gotten information about something called Mynax from a California naturopath. It is a calcium EAP product. I've been taking it for just over a week so too soon to tell whether that will help.

I've also been advised by a Canadian naturopath to take Aloe Vera internally. I've been taking a half teaspoon of a free dried aloe vera product for a few weeks now, so we'll see how that goes. One has to wonder if any of these things affect the outcome of the LDN in any way. I do know that I will continue to take the LDN because I do believe it is the best thing out there for MS and many other immune system based disorders.

UPDATE: July, 2008 – 6 years on LDN

Since I noticed some minor progression, I’ve been experimenting with various supplements to try to interrupt it. I’ll keep you posted on the outcomes.

Joyce F, USA May‘02

“I never really did start going downhill until I slacked off from my very vigorous aerobic exercise routine a few years back. You see, that is what was producing all those endorphins and I never knew of the connection till now.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"

www.barsakforum.com

rsevinc · Tarih: Cum Arl 26, 2008 7:23 pm Mesaj konusu:

11) Thanks to LDN I can enjoy life - Vickie

LDN since August 2007
- story submitted 13 January 2008
- story updated July 2008 (2yrs on LDN)

SPECIFICS

DIAGNOSIS
- April 26 2006 to Dec 2006 – Sudden onset of frightening symptoms, eg; girdling referred to as MS hug - this resulted in a frustrating series of doctor visits and tests, including MRI, and the following diagnoses – a syrinx (a cyst in thespinal cord) - neurologist, and transverse myelitis - neurosurgeon.
- Dec 2006 – Symptom progression resulted in a Lumbar Puncture, diagnosis of MS, and prescription for Rebif.

MEDICATIONS (OTHER)
- Jan 1 2007 to Jul 2007 – Rebif
- Aug 2007 to Aug 2007 - Prokarin
- Jun 2007 to Dec 2007 - 10 mg Baclofen 3 or 4 times a day
- Sept 2006 to Dec 2007 - 200 mg Lyrica 2 or 3 times a day
- Jan 2008 – reduced dosage to - 5mg Baclofen 3 or 4 times a day
- Jan 2008 – reduced dosage to -100mg Lyrica 2 or 3 times a day

MEDICATION (LDN)-
1 Aug 2007 to June 2008 – 4.5 ml Low Doses of Naltrexone (LDN) – 3ml for one month. Soon after increasing to 4.5 ml I experienced some anger issues and increased spasticity so I dropped back down to 3 ml for another two months before again increasing to 4.5 ml and staying there. (I bought 50 mg tablets and dissolved one 50mg tablet into 50ml cooled, sterilized water to make the liquid myself. I'd shake the bottle and use a needle-less syringe to draw up the exact dose and squirt it into my mouth.

- June 2008 to present – 4.5mg compounded capsules Low Dose Naltrexone (LDN)

LDN – DOSE & TYPE
a) Dose – 4.5 mg Low Dose Naltrexone (LDN)
b) Time - I take my Naltrexone around 10:00pm each night
c) Type – 4.5mg compounded capsules

DIET
Modified in response to allergy testing and guidance. No wheat, beans, dairy, eggs, cheese, walnuts, chocolate, or tuna. No nightshade vegetables.Nothing made with yeast. Limited caffeine, alcohol, sugars

SUPPLEMENTS
I also supplement with the following:
D3 - 9000 IUs daily – specially compounded
B12 injections – 3 times per week - self-administered
Enzymes - 2 capsules - three times per day
Probiotics – 2 per day - two different types taken on alternate days
Cytozyme-AD - 80 mg - twice per day
MSM – 30mcg - twice a day
Multivitamin – 1 per day
Chlorophyll tablets – 8 tablets - three times per day
Acetyl L carnitine – 1 per day
Evening primrose oil – 1 capsule - twice per day
CoQ10 - 300 mg - twice per day
B complex – 1 per day
Inf-Zyme Forte –1 per day - with a meal

ACTIVITIES & EXERCISE
My lifestyle had become increasingly limited and restricted by extreme fatigue. I'm more productive. I can go out with friends, stay up late like a grown up! I can shop. I can walk my puppies.

MY STORY – January 2008

I had a sudden onset of symptoms beginning April 26, 2006. Most notably was the girdling or MS hug. I was misdiagnosed by a GP but eventually referred to a neurologist. I had test after test, including MRIs, and was originally told I had a syrinx. This didn't feel right to me. I took my MRIs to a neurosurgeon who told me I had transverse myelitis.

My symptoms continued to progress so I had a lumbar puncture and in December 2006 I was told I had MS. In January 2007 I started on Rebif.

Over the course of the next seven months my physical condition deteriorated. I had to take naps, sometimes on the floor of my office. I didn't think I was going to be able to continue working.

I felt as though I had a large boulder on my shoulders. My lifestyle had become increasingly limited and restricted by extreme fatigue. I shuffled along slowly. I used a cane if I had to walk any distance. On the rare occasions I went to the grocery store I had to use the carts, so I had begun ‘shopping’ for an electric cart because I couldn't walk.

This was a very difficult time for me. I’d spent twenty years in the military and was very fit mentally and physically. During all those years I was always the person others had a hard time keeping up with when walking, but I’d reached a point where I didn't feel like doing much of anything. I’d go to work, come home, sit for a little while, then sleep.

I wasn’t getting anywhere, and my first neurologist didn’t listen and didn’t seem to care. Once I made up my mind to discontinue the CRAB medication, I cut my ties with the intent of going it alone.

In July 2007 I stopped taking the Rebif. I just couldn't bear the thought of another shot. As each day passed I felt stronger and stronger.

Then, during my travels over the Internet I came across the low-dose naltrexone treatment (LDN). I was
intrigued. I had a good doctor but he appeared to be influenced by the Rebif people – and he certainly wasn’t open to alternative medicine.

I took a leap of faith on 1st August 2007 and started LDN. I’d read a lot about LDN. I was hopeful it’d halt progression of my MS and I also hoped to benefit from symptom improvement.

During the same period I also tried Prokarin for a very short time, but I found it too difficult to work with and stopped taking it.

I now go to the Veterans Administration for my MRIs and medications. I have not discussed my taking LDN with the VA. I’ll raise it after I see the results of the MRI at the end of the year.

My condition has improved greatly. If nothing else LDN has increased my energy level. I think it also helps me sleep. I’ve been able to cut my use of Baclofen and Lyrica in half.

I had MRIs of brain, cervical and thoracic spine in December 2007. The neurologist told me that the lesion over T8 was inactive, no change when the contrast was introduced – and there were no new lesions in my brain.

I've also found an ecological internist. She's started me on high doses of D3, shots of B12 and a box full of supplements. I was tested for allergies and have been working hard on cleaning up my diet.

I'm not 100% yet but I work all day with no problems. In fact I feel like I'm more productive. I can go out with friends. I can stay up late, like a grown up! I can go shopping. I can walk my puppy.

Now I feel like I've got my life back I want to tell everyone who might benefit about LDN. Some people are very receptive, others not so much. But I figure if you plant the seed, when they're ready they'll remember. Low-dose Naltrexone has given me my life back so I’m sharing my story in the hope it’ll inspire and benefit others.

UPDATE: July 2008

Changed from liquid LDN preparation to compounded capsules. Also switched doctors. The new doctor is an M.D. who runs a clinic offering infrared sauna, acupuncture and other services. I am starting chelation therapy in a week to reduce my heavy metals load. I'm still benefiting from LDN and will continue to take it.

Vickie, USA Jan‘08

“I’m not 100% yet but I work all day with no problems. In fact I feel like I’m more productive. I can go out with friends. I can stay up late, like a grown up! I can go shopping. I can walk my puppy.”
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