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Kayıt: 30 Arl 2007
Mesajlar: 2390
Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 4:00 pm    Mesaj konusu: Alıntıyla Cevap Gönder


26) LDN-Four years breast cancer free - Lola

LDN since 21 April 2004
- story submitted July 2008 (4+ years on LDN)

SPECIFICS

DIAGNOSED
- 21 Apr 2004 - Breast Cancer Stage IIA
Recommended Treatment Plan
Chemotherapy: 5-FU--Intravenously every 3wks along with
Adriamycin-Intravenously every 3wks along with
Cytoxin--Intravenously every 3wks
for six treatments
Then
Radiation Therapy for approx 6 weeks daily x 5 days, Monday through Friday
(No Anti-hormonal (anti-estrogen) therapy possible)

TESTS (pre LDN)
Copied from the Medical Report, April 2004:
Size of tumor 2.8cm, location 12 O'Clock.
Type Grade III, Poorly Differentiated, Infiltrating (Invasive) Duct Cell Adenocarcinoma
Hormone receptors Estrogen-Negative, Progesterone-Negative
HER-2-NEU Oncogene Negative Over-expression
Flow Cytometry (strands of DNA) Diploid-two
Rate of Growth (percentage of cells dividing) S-Phase Of-13.6% (High-Fast)
Sentinel Node Axillary Lymph Nodes, none of two were positive
Staging Negative for Metastases Stage IIA (T2 NO MO)
Percentage chance of relapse: 33% over 5-10 years with no further therapy
- 21 to 29 Apr 2004 - No biopsies were done prior to or during surgery

MEDICATION (pre LDN)
- prior to Apr 2004 – none, apart from birth control pill

MEDICATION (post LDN)
- 21 Apr 2004 to present – 4.5mg Low Dose Naltrexone (LDN)

SURGERY (post LDN)
- 29 Apr 2004 - Surgery - Right Partial Lumpectomy

TREATMENT (post LDN)
- May 2004 to Jun 2004 - Radiation Therapy for 6 weeks, daily x 5 days per week, Monday through Friday

TESTS (post LDN)
- July 2008 – To-date bone scans, blood work, mammograms, CT and PET scans have all come back negative for cancer

LDN DOSE & TYPE
a) Dose - 4.5mg Low Dose Naltrexone (LDN)
b) Time - at 10pm every night
c) Type - compounded capsules using pure naltrexone powder and lactose filler

SUPPLEMENTS
- prior to Apr 2004 - none
- Apr 2004 to present, as follows:
DL-Phenylalanine 500mg x 2 capsules per day
Tart Cherry Juice – one glass daily
Vitamin D3 15mcg (600 IU) x 1 daily
Fish Oil capsule 1000mg x 2 daily

COMPLEMENTARY THERAPIES
- none

DIET
- 1973 to 1990s – Low Carbohydrate diet
- 1990s to 2002 – off and on Low-Carb diet
- 2008 – Commenced Suzanne Somers diet

EXERCISE OR INTERESTS
- Apr 2004 to present – normal, no particular restrictions


MY STORY – July 2008 – over 4 years on LDN

I was in my mid 60s when diagnosed with Breast Cancer in April 2004.Before the diagnosis, I’d only ever been admitted to the hospital once in my lifetime, and that was to give birth to my wonderful daughter in 1963.

I’ve always been healthy - never had blood pressure problems, nor cholesterol problems. I’ve never been on any medications except for many years of birth control pills. I seldom even took aspirin. I did smoke, but only until my mid thirties, then I quit for good. I’m 5ft 1in tall and have always weighed around 110lb.

At the time of diagnosis my daughter was taking Low Dose Naltrexone (LDN) for her Multiple Sclerosis (MS), and was doing really well, so she immediately put me on 4.5mg of LDN the night of 21 April, 2004.

I decided to go ahead with the recommended surgery, a Right Partial Lumpectomy, on 29th April, then have the radiation therapy, but I also wanted my daughter to schedule a consultation with Dr Bernard Bihari, to give me a second opinion on the chemotherapy.

On June 9th 2004, during the time I was undergoing radiation therapy, I had a phone consultation with Dr Bihari, after I’d faxed all my medical reports in advance.

After consulting with Dr Bihari I decided not to undertake chemotherapy, but instead continue taking the 4.5mg of LDN each night.

Dr Bihari told me that, as I was taking LDN before the lumpectomy, any cancer cells that may have escaped during surgery would have been destroyed like pac-men by the immune system.

At Dr Bihari’s suggestion, I’ve also been taking two 500mg DL-Phenylalanine capsules, Solaray brand, every day on an empty stomach - to keep my endorphins up throughout the day. (NB This is not for everyone. There are cautions on the label. For example, if you have high blood pressure or PKU, you cannot safely take this supplement.)

It is now July 2008, and ALL of my bone scans, blood work, mammograms and other scans have come back negative for cancer.

I continue to take 4.5mg LDN at 10pm every night, adhering to Bihari’s LDN treatment protocol.

I have now been cancer free for 4 years.

Lola, USA Jul‘08

Reference:
' ... As a fat-soluble vitamin, vitamin D requires some dietary fat in the gut for absorption. ... Very few foods in nature contain vitamin D. The flesh of fish (such as salmon, tuna, and mackerel) and fish liver oils are among the best sources ... '
http://ods.od.nih.gov/factsheets/vitamind.asp

“It is now July 2008, and ALL of my bone scans, blood work, mammograms and other scans have come back negative for cancer.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"
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En son rsevinc tarafından Pzr Arl 28, 2008 8:05 pm tarihinde değiştirildi, toplam 1 kere değiştirildi
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rsevinc



Kayıt: 30 Arl 2007
Mesajlar: 2390
Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 4:10 pm    Mesaj konusu: Alıntıyla Cevap Gönder

27) LDN-Crohn’s and Me - Peter B

LDN since October 2007
- story submitted July 2008 (9mths on LDN)

SPECIFICS

DIAGNOSED
- 1996 to 2003 - health deteriorated steadily, many emergency trips to hospital, but no diagnosis. I began to lose weight quite quickly, and during this period I was rushed to hospital 11 times by ambulance and one by car. I was at my wits end. The last time I was picked up in an ambulance I insisted to be taken to the Carlisle hospital instead of Dumfries hospital.

- 2003 - admitted to Carlisle hospital and diagnosed with Crohn's Disease

MEDICATION (pre LDN)
- 1996 to 2003 – no medication
- 2003 to 2003 – during a few weeks in Carlisle hospital - IV morphine & IV steroids
- 2003 to 2006 - Prednisolone (steroids) x 40mg (stopped taking them 2 years ago)
- 2006 to Apr 2008 – no medication

TESTS (pre LDN)
- 1996 to 2003 – approx 12 endoscopies, colonoscopies and barium follow-throughs

SURGERY/HOSPITAL TREATMENT
- 2003 - a section of my intestine, and part of my small bowel was removed

MEDICATION (post LDN)
- Oct 2007 to Oct 2007 - 4.5ml LDN (stomach problems led to reduced dose)
- Oct 2007 to Dec 2007 - 1.5ml LDN
- Dec 2007 to Jan 2008 - 2.5ml LDN
- Jan 2008 to Feb 2008 - 3.5ml LDN
- Feb 2008 to present - 4.5 ml LDN

TESTS (post LDN)
- none

LDN DOSE & TYPE
a) Dose - 4.5ml Liquid LDN
b) Time - I take my LDN at bedtime each night, usually between 10pm and 12pm
c) Type – Liquid (the label says ‘135 naltrexone’)

SUPPLEMENTS
- 1996 to 2008 – I tried lots of herbal supplements.
- Mar 2008 to present - Aloe Vera oil every 3 days and
- May 2008 to present - I now start each day with a chamomile, marigold, primrose tea blend. (I use the actual leaves and buds, soak them in hot water for ten mins, then strain and drink - from a health food shop. It tastes like crap, but seems to set me up for the day and makes me feel good.)

THERAPIES
- 2003 – 2008 - Acupuncture - I’d recommend acupuncture highly to anyone suffering from Crohn’s. It had no real effect the first time I went, but by hell it did every other time.

DIET
- 1996 to 2008 – very restricted
- 2008 to present: No spices, eggs, or bread. Fruit was off the menu but I now find I can eat it in moderation without adverse consequences. Believe it or not, lucozade was bad news, and red bull a killer. I used to start with black tea but it’d give me a bad gut. Thankfully, my diet is a little less restricted these days: I can have the odd drink of alcohol, very occasionally. If I have an alcoholic drink, then it has to be vodka. Long ago, I used to drink jack daniels but it’s a gutrot, as is whisky. All ales and larger make me feel bloated and ill.

EXERCISE OR INTERESTS
- 2008 – I’m getting more exercise and can go for a walk without wondering where the next bathroom is.


MY STORY - June 2008

I've had Crohn’s Disease for some 12 years now. Soon after diagnosis, I had a section of my intestine and a part of my small bowel removed. They then put me on steroids that seemed to ease the pain and make life a little more bearable, but the problem was still there.

I was first ill in 1996 when rushed to hospital on Boxing Day with chest pains. I was worried it was a heart attack, but I was a fit person who was playing 2, sometimes 3 games of football a week. I was checked and they determined it wasn’t a heart attack. They had no idea what it was but kept me in for 5 days and kept an eye on me. I was put on an IV drip and given morphine injections to help with the pain. I have to admit I was fine after that for a few weeks, then it happened again and the same process was carried out at the hospital.

I began to lose weight quite quickly, and during this period I was rushed to hospital 11 times by ambulance and one by car. I was at my wits end. The last time I was picked up in an ambulance I insisted to be taken to the Carlisle hospital instead of Dumfries hospital. At Carlisle’s I was dealt with in a professional way and had endoscopies and colonoscopies. I was introduced to a gentleman called Mr Palmer who was a cancer specialist. He quickly discovered what the problem was - and a good job too as I had dropped from 12 1/2 stone to 7 stone in a month.

My family never said it, but they all thought I had cancer and were ready to call my brother in from Australia because they were worried I wasn’t going to make it. I’d had endoscopies, barium follow-throughs, and colonoscopies by the load before this, but Dr Palmer was the first one that managed to see what the problem was.

Not long after being diagnosed I had surgery - within a matter of days. I have a nice zipper scar that goes down my belly past my belly button. At least he managed to cut out 2 sections that were badly diseased.

I was then put on prednisolone steroids, 40mg, and was on this dosage for at least 3 years (1997-2000), before being told I should have reduced it years before. I steadily reduced the dose and began to feel a bit better, but my whole life changed from the day I first fell ill.

As you know there is no cure for this Crohn's Disease and it is the most intrusive disease known. It affects your whole way of life, no more going out and relaxing, having a drink or going to a restaurant and eating what you want. It's a case of let's plan every trip based on; "are there toilets nearby?", or "sorry, we can't attend that restaurant as they do not serve suitable food". There is also the embarrassing side of the illness that all of us with digestive disorders know about, but I won't touch on it in this story.

I could not go out for meals and drinks when I wanted. I found going anywhere a potential disaster, as I found myself needing the toilet and would be in it for ages so it put a stop to doing things I used to do. I had to change my diet completely. I found foods I usually ate would make me ill and it got to a stage where I was frightened to eat anything because I knew it could result in a day of being ill and camped in the toilet.

Yes there have been times when I felt better – usually those times when I stopped taking the steroids completely as I knew they were not helping but only masking the pain and causing me more illness.

I don’t understand why doctors can just so easily say ‘take a steroid and go home’ - to what I think is a death sentence. Taking steroids did help the spasms in the gut and ease the pain, but do we really know what the drugs are doing to our bodies? We put on weight in a rapid style, and no matter what we do it's hard to get the weight back off. People cannot live that way as the steroids have so many side effects that the public do not know about, such as; mood swings, depression, temper tantrums, brittle bones, kidney damage, and the list goes on … yet, I was given them like they were smarties.

I took steroids for years, and any time I was ill the doctors put me into hospital, stuck me on a drip, starved me of food and water, and pumped me full of steroids and morphine. That's no way to live, but it was the only way I could get relief.

The last straw for me was 2 years ago when I sneezed and cracked 2 ribs. Don’t get me wrong, it wasn’t a huge sneeze, it was just a normal, every day, run of the mill one. Why had this happened? Steroids, I’m sure, played a part - so I decided there and then to bin them for good.

I tried other herbal things and even acupuncture, which incidentally, I’d recommend highly to anyone suffering from Crohn’s. It had no real effect the first time I went, but by hell it did every other time. In the end I took nothing for the illness, had acupuncture, but just lived with the bad gut and pain and put up with it … that is, until October 2007.

I was first introduced to LDN by a friend who suffers from MS and read all about the tests that have been done, and the outcomes of Crohn's patients being on the drug. Tests showed that the scarring and blisters go away, the redness of the intestine walls were a thing of the past and the lining returned to pink. To others who read this story, this will make little sense, but to the worst-hit cases of Crohn's, this is like having 6 numbers in the lottery.

A close friend, Steven, who is fundraiser for LDN, has MS - and he called me to say he had something that would help me. He gave me a number to call so I could speak with a lovely lady called Linda Elsegood.

I called Linda, and within 5 mins she’d convinced me LDN was worth trying. I ordered it online. It was easy to do and I got a bottle of red medicine that didn’t taste too good, but hey, if you drink Guinness you’ll know what I mean. So anyway, I tried the medicine. I didn’t want to get my hopes up, but I have to admit I was surprised at how I felt.

Since starting LDN I've noticed a vast improvement in my well-being. I have more energy and drive in the morning. I've also started to eat much better, and I'm finding I can eat fruit again without having to run to the bathroom. I've rediscovered the freedom of walking again without the worry of my stomach playing up. My moods are much better and I feel friendlier towards people: I've even been out to a bar and had a couple of drinks.

Don't get me wrong. It's early days yet, but so far, I'm being positive. There are a few side effects when starting to take the new medicine. I started taking 4.5mg LDN but had stomach problems, so I dropped the dose down to 1.5mg for 1 month, then took 3mg for 1 month, then took the optimum dose of 4.5mg.

You have to build up slowly with the dosage, because if you start at the maximum 4.5mg, you'll find yourself with a bad stomach and you'll feel like rubbish (I found that out the hard way) - so start at a low dose and build it up slowly. Like every drug it takes time to notice improvement, especially as this is such a low dose. It took a few days for me to notice the first beneficial changes, but there were changes, and so far they’ve been sustained.

I always take my LDN when I am just getting into bed. I go to the fridge where it’s kept, take the liquid, then straight into bed and read for a short while before I am off to sleep. I never used to be able to sleep very well, but since I’ve started taking LDN I find I can get the rest my body needs.

I don’t hide my illness. I make sure people at work and my family are aware of what the illness is … it’s nothing to be embarrassed about. Talking to people helps them understand your feelings. They’re not mind readers and they don’t know what you’re going through unless you talk to them and help them see they can help.

I have work friends that know there are days that everything is not great with me and they accept that there may be times I will be in the toilet a while. My family always makes plans if we are going on journeys. We make regular stops without me having to plan the route myself and worry if I’m going to need the toilet. It’s nice to hear them say ‘ok let’s stop here for a sandwich’, or any other excuse they can find without making me feel like I need to ask them to stop. It makes a big difference.

On family birthdays, when we all go out for a big meal, they always chose somewhere that they know will have ordinary food that will agree with me rather than booking an Indian meal where everything on the menu will killme.

I’ve had emails from people all over the world asking me for advice, and I can say it’s been a pleasure to help people. I like knowing I’m helping them move on to something less damaging to their bodies than steroids.

I walk out the front of my house along the sea front knowing that if I was to feel ill, I can always go back home,
but at least it’s a start - and it comes with a renewed sense of freedom I haven’t felt a long time. I recommend
others do the same. Don’t push it, but try to get some exercise - slowly but surely - and take up a hobby to relax yourself. I find fishing very therapeutic, and when I’m fishing, my body just seems to automatically relax.

Last year, I went on holiday to South Africa to see my mother and father-in-law. They’re aware of my illness and were really considerate to my needs - and I’ll tell you what … the 2 weeks I was away was the best relief I’ve felt in years … until now, with LDN.

I’m now looking forward to a more comfortable life and hope that this story will help others realise steroids aren’t a long term solution to their health problems.

Cheers,
Peter, UKJul‘08

Sincere thanks to Linda Elsegood, LDN Research Trust, UK (ldnresearchtrust.org) for freely sharing this story with Case Health in June 2008.

“ I’m now looking forward to a more comfortable life and hope that this story will help others realise steroids aren’t a long term solution to their health problems.”
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"
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En son rsevinc tarafından Pzr Arl 28, 2008 8:01 pm tarihinde değiştirildi, toplam 1 kere değiştirildi
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rsevinc



Kayıt: 30 Arl 2007
Mesajlar: 2390
Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 4:21 pm    Mesaj konusu: Alıntıyla Cevap Gönder

28) LDN-Crohn’s best it’s ever been - Claudia

LDN since February 2008
- story submitted July 2008 (5 mths on LDN)

SPECIFICS

DIAGNOSIS
- Jun 2004 - Crohn's Disease

MEDICATION/TREATMENT (pre LDN)
- Jun 2004 to Jul 2004 - Cipro, Flagyl, Prednisone
- Jun 2004 to Nov 2004 - Bentyl, Colazol
- Nov 2004 to Feb 2005 - Asacol, Bentyl
- Feb 2005 to Oct 2005 - No medication due to pregnancy (doctor approved)
- Oct 2005 - Mar 2006 - Asacol
- Mar 2006 to Feb 2007 - No medication
- 16 Feb 2007 - phenergan and vicodin for abdominal pain - Hospital Emergency Room (ER)
- Feb 2007 to May 2007 – Asacol, Chromagen (iron)
- May 2007 to May 2007 - Pentasa (not tolerated)
- May 2007 to Aug 2007 - 6 mercaptopurine, Asacol (continued until April 2008)
- Aug 2007 to Apr 2008 - Asacol
- May 2007 to May 2007 – 6-mp, Asacol, Prednisone x 40 mg taper dose for 6 weeks (post hospital admission)
- Nov 2007 to May 2008 - In Penn State Clinical Trial. Unknown at this time whether LDN was started in November 2007 or in February 2008.

TESTS & PROCEDURES
- Jun 2004 - CT Scan with barium contrast diagnosed Crohn’s Disease (in local hospital ER), followed by colonoscopy w/biopsies by a GI to confirm diagnosis (2 days later, still hospitalized)
- Jun 2004 – Colonoscopy Results: Colonoscopy revealed a ‘normal looking colon with what appeared to be a fissure orpossible Crohn's disease involving the anal canal.’ No biopsy from this area was taken. ‘The rest of the colon was unremarkable until one got to the cecum. At the cecum, a stenotic ileocecal valve could be seen with some ulcerations surrounding it. The scope was able to be manipulated through this somewhat stenotic area into the terminal ileum. The terminal ileum contained the findings characteristic for Crohn's disease. There was marked fissuring ulceration, induration, cobble-stoning, erythema and edema. Biopsies and photography were obtained.’ - Sept 2004 - CT Scan of abdomen - CT Scan Results: Terminal ileum at the ileocecal valve extending proximally for several cm is abnormal. The call appears thickened. There is inflammatory change in the adjacent fat. A few small soft tissue nodular densities adjacent to the abnormal terminal ileum likely represent lymph nodes. This appearance is most compatible with an exacerbation of her Crohn's disease.
- 4 Dec 2006 - Blood work: Iron 33 MCG/DL, %SAT 10.7
- 1 Feb 2007 – Colonoscopy Results: Internal non-bleeding, mild hemorrhoids were found. One nodular area was found at 22cm proximal to the anus. This looks like a site of previous fistula with scarring. No active inflammation or ulceration. An area of congested mucosa with polypoid-appearing tissue (likely granulomatous tissue) was found at the ileocecal valve. Narrowing of the IC valve was noted. A diffuse area of mucosa in the terminal ileum was moderately erythermatous, nodular and edematous. Tissue was very friable. Unable to advance beyond 5 cm proximal to the IC valve due to luminal narrowing. Biopsy results: Non-specific chronic active ileitis. Chronic inflammation with focal active cryptitis.
- 15 Feb 2007 - Upper GI/Small Bowel Follow-through Results: Showed disease at the terminal ileum but no signs of fistulas or strictures.
- 4 Apr 2007 - Blood Work: Iron 61 MCG/DL, %SAT 18.5
- 16 Apr 2007 - Capsule Endoscopy: ‘There is patchy segmental inflammatory segments throughout the small bowel suggestive of active Crohn's disease. The distal portion of small bowel was obscured by stool. It appears that the capsule time elapsed while still in the small bowel. A possible avm was incidentally noted in the proximal small bowel.’
- 11 May 2007 - CT Scan and later admission into hospital with lower-right quadrant pain. CT Scan Report Results: ‘A long segment of abnormal terminal ileum with marked thickening of the wall and narrowing lumen. It also showed that there was mild to distal portion of the appendix which had enlarged up to 9 millimeters in size with some inflammatory changes at the tip of the appendix. Further surgical consultation was advised particularly considering that the appendix had changed in caliber.’
- 11 May 2007 - Had low white blood cell count - apparently due to 6-mp.
- May 2007 - Received surgical consult: Non surgical at this time
- May 2007 - Gastro consult advised resection, which Family Physician and Surgeon did not advise.
- 27 Sept 2007 - Blood work: SED Rate 31 MM/HR
- 13 Nov 2007 – Colonoscopy w/biopsy: Polyp removed from ileocecal valve during procedure.

Colonoscopy Results:
Ileum: Erythema present, vascular pattern absent, erosions present, granularity present, bleeding present, ulcers present, edema present, deep ulcers present.
Sigmoid Colon: Vascular pattern absent. Pseudo polyps present, Granularity present, bleeding absent, ulcers absent, Stenosis, non-ulcerated. Fistula with suspected opening.

Biopsy results:
Ileum: Active chronic inflammation

Right Colon: No pathologic diagnosis
Transverse Colon: No pathologic diagnosis
Left Colon: Active chronic inflammation, severe
Rectum: No pathologic diagnosis
Polyp ileocecal valve: Submucosal lipoma, lymphoid hyperplasia

‘The biopsies from the ileum show small intestinal mucosa with villous atrophy, increased lamina propria chronic inflammation and active inflammation involving the surface epithelium and immediately subjacent crypts. The biopsies from the right colon and transverse colon are unremarkable. The biopsies from the left colon contain three unremarkable mucosal fragments and a fourth fragment with marked active chronic inflammation. The rectal biopsies are unremarkable.’
- 15 Feb 2008 – Colonoscopy Results: Ileum: Erythema, granularity, bleeding, ulcers, edema and stenosis present. Activity level severe, Deep ulcers present. 30 cm fistula - Ileum to sigmoid.
- 13 May 2008 – Colonoscopy Results: Ileum: Erythema, erosions, pseudo polyps, granularity, bleeding, ulcers, edema present. Fistula healed.

MEDICATION/TREATMENT (post LDN)
- Nov 2007 to April 2008 - Asacol
- Feb 2008 to present – 4.5mg Low Dose Naltrexone (LDN)

LDN - DOSE & TYPE
a) Dose - 4.5mg Low Dose Naltrexone (LDN)
b) Time - I take my LDN at bedtime, usually around 10pm.
c) Type - capsules compounded with pure Naltrexone and unknown filler

DIET
- 1998 to present - Vegetarian
- Jun 2004 - Jan 2005 - low residue diet
- 2008 to present - Currently no dietary restrictions, but I do not tolerate artichokes or corn

SUPPLEMENTS
- Feb 2005 to Jun 2007 - Iron

ACTIVITIES, EXERCISE, INTERESTS
- Yoga, some Pilates, and I play the Wii :-). Keeping up with my almost 3 year old takes a lot of exercise! I enjoy spending time with my family, shopping, reading and helping in my community.


MY STORY – July 2008

I lived in Florida for the first 25 years of my life. I had been experiencing ‘stomach problems’ since my late teens, but thought nothing of it. I moved to West Virginia in 2003 and began working at a domestic violence shelter shortly after I moved.

In June of 2004 I began experiencing debilitating abdominal pain after each meal. I still went to work and tried to ignore the pain. Luckily one of my co-workers was formerly a nurse. She saw me doubled over in my office and asked what was wrong. When I pointed to my lower right abdomen as the location of the pain, she insisted that I leave and see the doctor immediately. After arguing with her briefly, the pain became overwhelming and I drove myself to a local clinic. I did not have health insurance and was trying to avoid a hospital bill. The doctor at the clinic pushed on my lower right abdomen and my vision went black.

He immediately sent me to the Emergency Room. I drove myself there. I called the girls at work on my drive to the ER and one of my co-workers met me there shortly after I was seen. They gave me pain meds which made me incoherent. They ran blood tests and had me drink barium for a contrast CT Scan. After several hours of waiting, the results came back and an Emergency Room doctor asked if I knew I had Crohn's disease.

Not only did I not know I had it, I had never heard of it and was not ‘with it; enough to understand what he was telling me. I was handed a print-out from the Internet to explain what this diagnosis meant. I was also told that I was going to be admitted to the hospital for further testing. I was given pain medication for the next day and not allowed to eat until I had a colonoscopy which was scheduled for Monday (I was admitted on a Thursday). I felt miserable, weak, drugged, tired and confused. All this and without health insurance.

I had the scope Monday and my blood pressure dropped to 60/40 afterwards. About an hour after the procedure was done, the representative from the local Department of Health and Human Resources came by to gather my financial information to see if I would qualify for help from the state to cover the medical bills - still groggy from sedation, I gave him information and I was denied for help. I was given antibiotics and steroids, as well as Bentyl and Colazol to treat the Crohn's and was released on Wednesday.

The medications were extremely expensive. My fiancé and I decided to move up our wedding date so that I could access his health insurance. We were married in August of 2004 in Las Vegas. I saw the gastro that performed my scope. I was extremely unhappy with him and so was thrilled when I switched to a provider in my insurance network. The new provider took me off the Colazol and informed me that it was only treating the colon, which was not the part of my intestines with the disease.

I had been spending 500 dollars a month on a medication that wasn't even treating the diseased area! This gastro put me on Asacol to better treat the affected area. I saw him a few times over the next year. He advised me that it would be fine to go off the Crohn's medication (Bentyl and Asacol) while I was pregnant (Feb 2005 - October 2005).

While pregnant, I worked full-time until June 2005, but then had to make a trip to the Emergency Room due to severe dehydration. I received IV fluids and phenergan.

In July 2005 I went to the hospital, again while pregnant, and had an ultrasound to rule out kidney stones. The final conclusion was ‘round ligament pain’. After I delivered a happy and healthy little boy in October of 2005, I had a monstrous flare, but did not go to the doctor for it - rather I just went back on the medications.

I was working full time again between November 2005 and July 2006, then found part-time work, due in no small part to the Crohn's disease. During the same period I changed gastroenterologists, then became anaemic and was put on Chromagen to help with the iron deficiency.

In January 2007 I enrolled in graduate school to obtain a Master's Degree in Special Education. (I’ll graduate in May 2009, after I complete a 12-week internship.)

In February of 2007 I decided to switch gastros again because the one I had did virtually nothing to help me and took very little time with me. My new gastro came very highly recommended and lived up to their reputation. Before I was even seen in the office, I was scheduled for a colonoscopy (as I had not had onesince 2004 and was experiencing a lot of bleeding and pain).

We tried Pentasa to better treat the ileum, but I did not tolerate it well. I was placed on 6-mp and a week later was hospitalized again with what they believed was appendicitis. While in the hospital, I received a surgical consult, saw my family doctor and got a consult from a gastro ... the one I left in 2006. He insisted that my ileum needed to be resectioned, but the other two doctors disagreed. I was given steroids, put back on the 6- mp and discharged after 2 days in the hospital.

During my time on the 6-mp, I was more miserable than I had ever been. I had constant headaches and developed gout in my hands from a build up of the uric acid from the medication. The steroids had their typical side effects and I put on weight as well.

I called my gastro and informed her that I was going to take myself off the 6-mp, as I'd rather deal with the disease than feel as awful as I had been feeling. There were days that I couldn't even get off the couch to take care of my son. I missed out on playing with him, cuddling with him and being a mom to him for 3 months because of the medication. That's when I knew there had to be something else out there.

My gastro wanted me to consider Remicade or Humira. I did my own research and found an article by Dr. Jill Smith about low-dose naltrexone (LDN) and the clinical trial she had completed regarding its use in Crohn's patients.

I took the literature to my gastro who stated that she didn't know enough about it to prescribe it, but that I was the second person that month to ask her about it. I showed her a list of doctors that prescribe it, but she couldnot be persuaded. I called doctors on the list, but none prescribed for Crohn's. So, I called Penn State and arranged to meet with Dr. Jill Smith about the study and to see if I would qualify.

In November 2007, I drove 4.5 hours to Penn State in Hershey, PA where I filled out paperwork, had a physical, got lab work and scheduled a colonoscopy. I qualified for the trial. For the next 6 months, I drove to Hershey EVERY month, 4.5 hours each way, for a 1 hour appointment. The exception was the three scopes I received when I would go down the night before with a friend and prep for the scope in a hotel room and ridehome after the procedure.

The trial changed my life. The medication changed my life. Without the compassion, education and determination of Dr. Jill Smith and her nurse, Sandy Bingaman, I would likely be dealing with an active and oppressive disease, and taking toxic medication with horrid side effects.

Instead, I take one pill before bed and experience only odd dreams - which really are quite entertaining. My intestines are not healed and naltrexone is by no means a miracle cure for Crohn's. However, it healed the 30cm fistula I had, and has significantly reduced the bleeding and pain I experienced on a daily basis.

On a side note, I've dropped 20 lbs in the last 4 months while on LDN. This is a positive aspect for me, as I put on a significant amount of weight from the other medications I had taken.

It's now July 2008 and I feel better than I have in years. I'm still on the LDN under the care of Dr. Smith, even though my part in the trial is over. I definitely don't miss that drive every month, but I truly miss the staff at Penn State, who went out of their way to make sure I was comfortable and cared for.

I have a prescription for Bentyl to take ‘as needed’, which is rarely. I hope more people afflicted with Crohn's have the opportunity to at least try LDN. It's helped many people already and will hopefully be widely available to patients who want a medication whose benefits FAR outweigh the risks.

Claudia, USA Ju‘08l

“I hope more people afflicted with Crohn's have the opportunity to at least try LDN. It's helped many people already and will hopefully be widely available to patients who want a medication whose benefits FAR outweigh the risks.”
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Kayıt: 30 Arl 2007
Mesajlar: 2390
Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 4:29 pm    Mesaj konusu: Alıntıyla Cevap Gönder

29) LDN-Every condition has improved - Celia

LDN since November 2007
- story submitted July 2008 (7mths on LDN)

SPECIFICS

DIAGNOSIS
- late 1960s – hyperthyroid resulting in partial thyroidectomy in 1971
- 1990 – osteoarthritis
- 1994 - chronic fatigue
- 2003 – high cholesterol
- 2004 - IBS with rectal bleeding (so bad sometimes I did not dare go out)
- 2004 - intestinal diverticula
- 2005 - high blood pressure
- 2005 - mild Systemic Lupus Erythematosus (SLE)
- Jan 2006 - abdominal aortic aneurism
- 2006 – chronic obstructive pulmonary disease (COPD)
- 15 May 2006 - Lung cancer (no tumour, just metastases to the chest), prognosis with treatment 6-12 months.Palliative care of chemo and radiation resulted in No Evidence of Disease (NED) but told the cancer would come back, with less than one per cent chance it wouldn't.
- Jan 2007 – COPD flared after chemo & chest radiation - chest x-ray showed inflammation due to infection but clear of cancer
- Jun 2007 - hiatus hernia and gastric ulcer - no sign of cancer in stomach.
- Jan 2008 - Temporomandibular joint dysfunction (Tmj)
- May 2008 – No Evidence of Disease (NED) for lung cancer, and abdominal aortic aneurism had ceased growing

TESTS (pre LDN)
- late 60s – thyroid problems
- 1990 - osteoarthritis
- 2003 – T4 test re fatigue - hyperthyroid – went back on Levothyroxine thyroid med
- 2004 – colonoscopy - IBS
- 2005 - positive ANA test detected mild Systemic Lupus Erythematosus (SLE)
- Jan 2006 – ultrasound detected abdominal aortic aneurism, size 3.5cm
- May 2006 – Mediastinoscopy detected enlarged lymph nodes in chest (Lung cancer)
- approx July 2006 – ultrasound - abdominal aortic aneurism had grown to 3.8cm
- Sept 2006 – CT scan for Lung cancer revealed ‘No evidence of disease’ (NED) following palliative chemo & radiation
- Jan 2007 – chest x-ray showed inflammation due to infection – clear of cancer
- 14 Mar 2007 – X-ray re back pain found thinning of thoracic spine due to radiation and steroids - thus started Adcal D and Alendronic Acid to build bone.
- 3 May 2007 - CT scan - ‘No evidence of disease’ (NED)
- Jun 2007 – Gastroscopy revealed hiatus hernia & gastric ulcer, no sign of cancer in stomach
- 5 Jul 2007 – X-ray – hip - re future surgery.
- Aug 2007 - Spirometry re breathing and to assess for surgery - I think the result was a FEV I of 42%.
- 1 Oct 2007 - CT scan of chest prior to hip replacement - NED, abdominal aorta aneurism had grown to 4.5cm

TESTS (post LDN)
- Dec 2007 – blood pressure lowered (after commencing LDN)
- 17 Dec 2007 - CT scan – NED for cancer but abdominal aorta aneurism had grown to 4.8cm
- May 2008 – X-ray of chest - NED for lung cancer, ultrasound - abdominal aortic aneurism has not grown any further and remains at 4.8cm
- August 2008 – CT scan - NED for cancer, X-ray of chest - NED for lung cancer, ultrasound - abdominal aortic aneurism has not grown any further and remains at 4.8cm

SURGERY
- 1971 - partial Thyroidectomy
- 10 Oct 2007 - total left hip replacement

MEDICATION/TREATMENT (pre LDN)
- 1971 to 1972 – 1 x 100mcg daily Levothyroxine following partial Thyroidectomy (ceased taking as I felt well)
- 2004 to Oct 2007 – 2mg x Loperamide, 135mg x Mebeverine (for IBS - ceased after improvement on LDN)
- 2005 to Nov 2007 – Plaquenil (for SLE)
- 2005 to Dec 2007 – Rampiril (blood pressure improved 2 mths after starting LDN so I ceased taking these meds)
- Jun 2006 to Aug 2006 – palliative care - 8 doses x chemotherapy (Cisplatin & Carboplatin) over 2 months.
- Aug 2006 to Sept 2006 – palliative care - 12 doses x radiation over a period of 2.5 weeks
- Jan 2007 - I had a very bad exacerbation of COPD, which landed me in the hospital. I came out on oxygen, a nebuliser (Atrovent 500mcs per 2ml), steroids (Prednisolone tablets), and Flixotide inhaler (also contains prednisolone).
- Feb 2007 - steroid injection in left hip for pain

MEDICATION/TREATMENT (post LDN)
- Jan 2007 to July 2008 - Flixotide in nebuliser (prednisolone)
- 2003 to present - 1 x 100mcg daily Levothyroxine
- 2005 to present – 1 x 20mg Lipitor (statin) – (Jul 2008 - when I remember to take them)
- 2006 to present –Atrovent in nebuliser daily (Jul 2008 for COPD, though rarely used now)
- 2006 to present – Salamol Inhaler as needed
- 2006 to present – 1 x Mucodyne capsule 2 or 3 times per day
- Jun 2006 to present – 10mg to 20mg daily of Temazepam (since cancer diagnosis)
- Jun 2006 to present – 2mg x Valium as needed (since cancer diagnosis)
- June 2006 to present - Adcal D3 daily (since radiation thinned thoracic spine)
- June 2006 to present – 70 mg x Alendronic Acid – once weekly (since radiation thinned thoracic spine)
- Jan 2007 to present - 10mg Amitriptlyline (for pain in Temporal mandibular joint)
- Apr 2007 to present – Iscador (series 2) daily – a derivative of Mistletoe - homeopathic hospital referral
- Jun 2007 to present – 20mg to 40mg x Ozmeporazole (for Hiatus hernia and Gastric ulcer)
- Nov 2007 to present - 4.5mg Low Dose Naltrexone (LDN)
- Jul 2008 to present – Spiriva in inhaler – once daily

LDN - DOSE & TYPE
a) Dose – 4.5mg Low Dose Naltrexone (LDN)
b) Time - I take my Naltrexone at bedtime, usually around 9.30pm.
c) Type – 4.5mg capsules were initially compounded with pure Naltrexone powder and calcium carbonate filler, but filler was changed to lactose soon after starting (after I learned calcium carbonate can slow the release).

DIET
- May 2006 – I changed my diet but not radically. I now eat mainly eggs and fish, vegetables and fruit, no red meat. I have also discovered a penchant for the darkest chocolate I can find, at least 85 to 86% cocoa. I read about vitamin B17 and I started taking this almost every day in kernel form.

SUPPLEMENTS
- late 2006 to present – I began taking the following:
Vitamin C
Vitamin E
Vitamin B
Magnesium
B17 (in the form of 20 Apricot kernels daily - 3-4 at a time during the day, with a day off once or twice a week as per Phillip Day’s guidelines)
- July 2008 – The following were added:
Selenium
Alpha lipoic acid
L. Acetyl Cysteine
Milk thistle

ACTIVITIES, EXERCISE, INTERESTS
- Since improvement I’m able to get around a bit more and am walking more now. Feel much more alert.


MY STORY – June 2008

My name is Celia, and I live in Scotland--not exactly a spring chicken--but hey--I'm working on it!! May of 2006 gave me shocking news: I had a chest full of cancerous lymph nodes. Tears and grief overwhelmed me, grief for the life I would never have, and for those I would leave behind. The primary tumour was never found, but I was treated as 'lung' and thus received palliative care only--eight doses of chemo, followed by 12 doses of radiation. It was expected I had 6 to 12 months of living left to do.

I also had the following conditions: mild lupus, IBS (so bad sometimes I did not dare go out), intestinal diverticula, COPD, thyroid problems (had a partial thyroidectomy years ago), osteoarthritis, high blood pressure, high cholesterol, and chronic fatigue. After my conventional treatment, the oncologist was amazed when I went into remission. He assured me this would not last, that I had less than 1% of making it. Far be it from me to accept that! No further treatment was implemented after that initial work. It was a case of watch and wait--but I was unwilling to do either. Instead, I went in search of anything that might help me.

Of course I went on the usual supplements (but knew this was not enough), changed my diet (but not radically), and now eat mainly eggs and fish, vegetables and fruit--and no red meat. I have also discovered a penchant for the darkest chocolate I can find, at least 85 to 86% cocoa. I read about vitamin B17 and I started taking this almost every day in kernel form.

In January of 2007, I had a very bad exacerbation of COPD, which landed me in the hospital. I came out on oxygen and steroids. I then learned about Iscador, a derivative of Mistletoe, and fortunately, as there is a homeopathic hospital not too far from me, I got a referral and now use Iscador (Series Two), on a regular basis. Still, I searched the Internet, and, lo and behold, came across Low Dose Naltrexone (LDN). I had never heard of it before, but it seemed like a miracle drug. I had to have it. I fought for it, got it on the NHS, and so it costs me nothing.

I got my first bottle but did not dare take it, as I was on steroids regularly for my chest, and had to have my hip replaced and was thus also on painkillers. Steroids and painkillers should not be taken concurrently with LDN. Each night, I looked at the bottle, and each night I thought, 'Shall it be now?' As soon as my hip pain began to diminish, and I could come off the steroids (it was day ten), I took my first dose of LDN. I don't know why, but I was frightened of it!

My first feelings on LDN were as though I was on a bit of a high. Although I felt great, I had some disturbed nights, but not too many strange dreams (which happens with some people). I have now determined when it is best for me to take it. This is usually about 9:30 pm, and, as I take sleep aids an hour later, this seems to be working for me. Very soon after starting the LDN, I found I did not need the oxygen for my COPD; I only need to nebulise now maybe once a day, if that; and today I walked the furthest I have been able to for what seems like ages. It was a miracle, and I still can't believe I did it! One thing I also noticed early on was that I was not spending half my life in the loo. I had been referred for another sigmoidoscopy late in 2007 after my hip operation, but I cancelled it.

To this day, I haven’t had the bowel problem like I did before LDN. All my bowel problems went away, as did 'dire rear' and rectal bleeding, so I cancelled the sigmoidoscopy as I was sick of being poked about and was asymptomatic which was, and is wonderful!! My energy began to return. I had had chronic fatigue for many years, but slowly am getting more energetic. I was fit enough to have a hip replacement about six months ago. Oh, the relief!!

My last x-ray showed no signs of the cancer which was supposed to have killed me over a year ago, and my last CT scan revealed that my abdominal aortic aneurism had ceased growing. My blood pressure is now normal (after being too high for a few years), and I have come off my BP medications. My lupus does not bother me at all. I have a good appetite and am gaining weight.


UPDATE July 2008 – 7 months on LDN

At the time of this writing, I have been on LDN for about seven months. I feel quite good, all things considered, and I recommend LDN to everyone! The chronic fatigue is much, much better, I have more energy, and there is no sign of lupus. Although I was already in remission from the cancer, the LDN stopped my horrific bowel problem. That's now history!! Don't know if the LDN lowered my BP but something did! My COPD, which was made worse by chest radiation, is also much better than it was. On July 25 I stopped using the nebuliser and instead use Spiriva once daily through my inhaler. Multiple adverse health problems, including cancer, have all been helped by LDN.

A brief update from my early August 2008 appointment with my Oncologist follows: When I saw my Oncologist, he was surprised at how well I looked. He said he thought there should have been 'something' showing up by now. I told him I will not die from this blasted disease … well I will die, but not from that! He said the way I’m going on he wouldn't be surprised!!! As far as he was concerned, I need no further testing at this time. I’m asymptomatic and there is no sign whatsoever of the earlier enlarged lymph nodes - he said - amazingly - absolutely nothing!!!! I said maybe it’s the Iscador and LDN, and he conceded. I don't have to see him again for four months. All of the nurses commented on how well I looked. Maybe LDN is also the elixir of youth - ha ha, gimme more of that!!!!

My Onco thinks my GP is being very good to me supplying the LDN and Iscador. I told him right off … if they stop giving it to me, I’ll go ordering on the net ................................. I will not stop taking LDN for anyone .... So, it seems I am doing good so far, and that's what I wish for us all ....... If this story helps even one person, then it has been well worth the effort.

Celia, Scotland Jul

“I’m asymptomatic and there is no sign whatsoever of the earlier enlarged lymph nodes … “
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En son rsevinc tarafından Pzr Arl 28, 2008 7:32 pm tarihinde değiştirildi, toplam 1 kere değiştirildi
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Kayıt: 30 Arl 2007
Mesajlar: 2390
Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 4:34 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Interview with
Dr David Gluck
June 2008



Dr Gluck
We’re all curious. When, and under what
circumstances did you first meet Dr Bernard Bihari?


David G His family moved into my family's neighborhood in Queens (NYC) when we were both in the 5th grade of public school.

Cris How did you first learn of Bihari's Low Dose Naltrexone (LDN) protocol?

David G We continued seeing each other socially over the years, even after our medical training. In 1986 he told me about the positive results in the clinical study he had done of LDN in patients at Downstate Medical Center. The patients had ARC (later called HIV infections and AIDS).

Cris Have you ever prescribed LDN, and if so, what were the circumstances and the outcomes?

David G Since I have been retired from active medical practice for many years now, I have recommended it to many, many people but only prescribe it for members of my family. There, the purpose in most cases is for preventive use (either primary or secondary prevention).

Cris What led to the setting up of the lowdosenaltrexone.org and ldninfo.org websites?

David G In 1999, I was no longer in the active practice of occupational medicine, and having heard of the continued excellent results Dr Bihari was having with LDN in his private practice, and having shared that information with my son Joel, who is an experienced programmer, my son and I decided to launch the website in order to let physicians and the general public know about LDN.

Cris Most of your fellow medical practitioners aren't even aware of Low Dose Naltrexone as a treatment protocol, and those that are can be dismissive. Have you had your share of detractors?

David G Detractors? I am blissfully unaware of it, if I do. I have certainly encountered many, many doctors who were dismissive.

Cris What helped you maintain your sense of purpose, your resolve, through adverse times?

David G As I told Bernie Bihari, when he first told me what results he was seeing from LDN, "This needs to be shouted from the rooftops!" After a lifetime in Internal Medicine, where one had to deal with insufficient medications for serious illnesses, the discovery of this new and harmless method of upgrading the immune system and thus enabling one to draw on the body's own powerful potential to fight disease, seemed to me a godsend!

Cris Patients themselves say LDN is effective across a broad range of conditions linked by immune system dysfunction, but their views are largely ignored. Why do you think that is?

David G For many reasons … Doctors become inured to dealing with apparently preposterous and unscientific claims that patients bring them. Physicians' long professional training deeply ingrains the understanding that the scientific method, and only the scientific method, of testing proposed therapies by double-blind clinical trials can hope to yield reliable information. These trials are very costly and generally require the support of large pharmaceutical companies.

Cris In your opinion, what will it take for the medical community, scientists, politicians, and journalists to apportion value to patient testimony?

David G In my opinion, if it's only 'patient testimony', the chances are that they won't. Even if a celebrity or major politician were to become ill with a disease that could be well-handled by LDN, these people are shielded by their VIP status, and thus are restrained to use only the medical hierarchy's traditional treatment models.

I believe that the pathway to recognition for LDN is open to us in the form of continued successful outcomes in repeated small clinical trials run at academic centers. Each one of these that is published in a respected peer-review medical journal becomes another weapon in forcing the groups you mention to pay attention.

My hope is that the grassroots movement, which has brought LDN this far, will mobilize behind a collection of such medical journal reports (and there may be sufficient of them within the next year to act upon) and use them to bombard every governmental health-related committee to insist that 'Attention Must Be Paid!'. Should government be willing to listen (and perhaps LDN's cost-saving potential may do the trick), at that juncture, patient testimony may have its chance.

Cris Dr Gluck, I appreciate you making time for this interview. Before we wrap up, I'd just like to say ... After receiving my first two LDN health success stories in 2003 and deciding to research further, I discovered your website. Since then I've often wondered, if not for your website, your credentials, and your son Joel behind the scenes, if I would have learned the true depth, breadth, and inequity of the LDN story.

I want to take this opportunity to thank you sincerely for having the good grace, the courage, and the fortitude to freely share what you've learned with the rest of the world in what must, at times, have been an unwelcome or even hostile environment.

(1) Dr David Gluck, Editor, ldninfo.org & lowdosenaltrexone.org
(2) Cris Kerr, Administrator, casehealth.com.au
_________________
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Kayıt: 30 Arl 2007
Mesajlar: 2390
Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 5:43 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Interview with
Dr Tom Gilhooly
July 2008

Dr Gilhooly
How and when did you first learn of the
potential benefits of low doses of naltrexone
(LDN), and at what point did you realise you
wanted to investigate that potential further??


Dr Gilhooly A patient with MS in my NHS practice asked for LDN four years ago, in 2004, and I promised to at least look into it. I soon found out that there was little of the usual research and clinical support for the use of the drug. My experience in addiction medicine, where I had used the full-dose version of naltrexone, gave me the confidence to at least try the low-dose version. Fortunately this patient had a good experience and had a significant improvement in her hand tremor, so I was intrigued and wanted to look into it more.

Cris You've prescribed LDN for Multiple Sclerosis and have reported on successful outcomes. What's your overall observation of the likelihood of LDN benefiting MS patients?

Dr Gilhooly A significant proportion of patients with MS improve with LDN, but the main benefit is preventing deterioration. This is actually quite hard to prove but as part of our work on the LDN trial, we have developed a blood test, which helps determine who will respond and how well they have responded. We are still working to validate this test, but we are confident that LDN represents a major step forward for MS.

Cris Have you prescribed LDN for any other diseases, and if so, what was the outcome?

Dr Gilhooly I have used it in some Chronic Fatigue patients with good effect but with the advent of the blood test, I plan to use it more widely. I have also managed to get a patient with severe rheumatoid arthritis off steroids using LDN, which is pretty impressive.

Cris Most of your fellow medical practitioners aren't even aware of LDN as a treatment protocol, and those that are can be dismissive. Have you had your share of detractors?

Dr Gilhooly I have not really had many bad reactions from my colleagues although they will not usually prescribe it for various reasons. One of our aims is to increase the numbers prescribing LDN substantially, and this can only be done through increased research and training for doctors.

Cris If you have experienced opposition or adverse times, what helped you maintain your sense of purpose and resolve?

Dr Gilhooly LDN has really been kept alive by the patients worldwide who have derived a benefit, and of course it is very rewarding to help patients who have been to lots of clinics and had no improvement. We now feel that our understanding of how LDN works is improving, and it is less of an art and more of a science.

Cris Patients themselves say LDN is effective across a broad range of conditions linked by immune system dysfunction, but their views and testimony are largely ignored. Why do you think that is?

Dr Gilhooly LDN has not emerged from the usual pharmaceutical company route, and there is a tendency among doctors to be conservative and to distrust anything that has not been through the various stages of development that most drugs have. LDN is effective across a broad range of conditions but proving that is complicated and time consuming.

Cris Dr Gilhooly, I appreciate you making time for this interview. Before we wrap up, I'd just like to say ... thank you sincerely for championing the investigation of a treatment with much potential to alleviate suffering, but as yet very little support.

(1) Dr Gilhooly, MB ChB, MRCGP
(2) Cris Kerr, Administrator, casehealth.com.au
_________________
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Konum: Kadıköy/İstanbul

MesajTarih: Cmt Arl 27, 2008 6:18 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Interview with
Dr Jaquelyn McCandless
July 2008

Dr McCandless
How and when did you first learn of the potential
benefits of low doses of naltrexone (LDN), and at
what point did you realise you wanted to investigate
that potential further?



Jaquelyn M In early 2005 the lab director of Immunosciences, Dr Ari Vojdani, mentioned to me that the immune panels I was conducting on children with autism very much resembled the panels on MS patients he was finding in his laboratory. Soon after that I happened to come upon a website about patientreported treatments and noticed LDN being high on a list of therapies being used to help MS patients.

I looked up LDN on the www.lowdosenaltrexone.org site and also read in the autism literature about studies that had been done with varying doses of naltrexone a decade before with varying but some success, the researcher shoping that naltrexone might obviate the necessity to put the children on a casein free/gluten free diet to combat the opiates thought to be from the undigested large peptides going to the brain as caseo-opioids and gluteoopioids. Naltrexone did not satisfy their desire for that outcome, and compliance was very bad in their studies because of the terrible taste of this opioid antagonist for children who for the most part could not swallow capsules.

The main thing that came out of these few earlier studies was that naltrexone could be helpful for some self-injurious children. (Note: We now know that the main cause of self-injury in autism is extreme pain in inflamed guts but children who cannot speak cannot convey the source of their pain.) Nothing was noted then about any immune benefit, and I am not sure anyone knew yet at that time about the importance of endorphins to immunity. I thought, “Maybe this could help my autistic patients”.

I tried it for my granddaughter Chelsey and a few others who did not like it because of the bitter taste. I asked Dr Tyrus Smith at Coastal Compounding in Savannah, GA if he would help me create a transdermal carrier that would be effective, and he came up with a cream made with oil from the emu. I found it to be odorless, hypoallergenic, and extremely effective, and parents could apply it to the bodies of their already sleeping children when they, the parents, went to bed.

Parents began reporting, sometimes the very next day or within a few days, a fting of mood when their children awoke in the morning, calling it the ‘happy cream’. The thing they loved the most was that the children started being more li sociable, playing with their siblings and relating to their fathers for the first time. I have received many such reports since starting to prescribe LDN for children with autism.

Cris You've prescribed LDN for Autism and have reported on successful outcomes. What's your overall observation of the likelihood of LDN benefiting patients with Autism?

Jaquelyn M I have a large database that collected over 200 reports from patients until I finally stopped collecting them, with 75% showing a positive response to LDN. For autism, a very complicated and multi-factorial disorder needing varying therapies, this is considered a high benefit rate.

LDN is by no means a sole treatment for autism, but ideally accompanies dietary restriction, healing gut problems, nutrient protocols, and detoxification protocols. Parents like knowing that it is helping their children's immune system, though this benefit does not show up for awhile; but they particularly report liking the mood elevation, the socialization, and better cognition and language that occurs in many children. It is also very easy to apply and is inexpensive, which they also like.

I routinely require all of my own patients with autism to be on the casein/gluten free diet, but when I did a study on a larger group that had children who were not on dietary restriction, I began seeing hyperactivity and insomnia as a side effect to LDN in about 15% of the children. Since one of the aspects of autism is gut inflammation and ineffectiveness of the DPP-4 enzyme which is necessary for proper breakdown of the large peptides into amino acids, I see this side effect as a clue that the children would benefit from dietary restriction, and when parents agree and implement the diet often these side effects are ameliorated, but not always. Some children have had to stop LDN because the interference with sleep was intolerable for the parents and the rest of the family.

Giving an opioid antagonist even in a tiny dose to children who may have opioid-like substances in their brains from their diets can apparently cause a withdrawal reaction that manifests as hyperactivity. Sometimes cutting the dose down would help, sometimes enforcing the diet would help, and sometimes the kids just got used to it and began calming down and some just had to stop its use. Even in the face of severe insomnia and hyperactivity, many parents were reluctant to stop it because of their pleasure at seeing their child be sociable for the first time. This actually became an incentive for some to finally tackle the restrictive diet, which brought even more health benefits.

One year ago I queried the three pharmacies most known for compounding for autism and learned that over 10,000 prescriptions had been compounded for

LDN just by those three in the two years since being introduced by me to the autism community. Dr Smith who created the transdermal cream had generously given out his formula for the cream to at least 50 pharmacies, including firms located in Hong Kong, Scotland, and Israel where I had gone to teach doctors the bio-medical approach to autism, including the knowledge of LDN.

Cris You're presently in Mali with your husband, Dr Jack Zimmerman, trialling LDN for HIV. How is that progressing and are the results to-date in-line with or outside your early expectations?

Jaquelyn M I performed a series of immune tests on a group of children with autism, and discovered that 90% of them raised their CD4+ cell count in that 16-week period, and thought, "This has to go to Africa." I made some enquiries and learned that Dr Bernard Bihari, the discoverer of the clinical benefit of LDN in AIDS patients in 1985, had written a protocol and attempted to implement a research study in Mali Africa a few years before. This study could not get adequate funding and had been laid aside.

I was led to Mr. Seyni Nafo from Mali who had spoken of this attempt to do a study in his country in one of the early annual LDN conferences and who wasvery desirous of it being resurrected. With Mr. Nafo's invitation to come to Mali to look into the research possibilities and meet the professionals there in Bamako who might conduct the proposed study, and my husband's willingness to conduct a social/communication study alongside the medical research with me; we went in the winter of 2006, liked what we saw and the people we met, and proposed the revival of that study.

The challenges have been major, one of them being the language and distance problem, but phones, faxes and internet have been powerful tools in working together between the two countries and to carry this project forward. Another challenge has been finding groups or persons to contribute to funding for the study: We were certainly surprised at the difficulty raising funds for what we deem as a very important project.

However, with a substantial amount of our own funds along with help from many others it is actually currently in process with adult male and female participants in each of the three groups, one with LDN and placebo, one with LDN and HAART drugs, and one with HAART and placebos, and we are still gathering our total number of recruits needed with present hopes that the study will be fully recruited by the end of July and will probably complete around

March or April of 2009, about 4-5 months later than we had hoped.

The stigma associated with this disease makes those infected extremely reluctant to come forward for testing until they are already very ill, particularly the women, and this has made recruiting very slow, as by then it is too late for them to participate in the research we are doing, which is to try to show that LDN can prevent the inevitable loss of CD4+ cells until the patient finally has full blown AIDS leading to their demise.

We have had to go back to the drawing board several times for any changes; Mali has strict IRB regulations based upon US IRB regulations. We have found that many Africans are fearful of American drug studies that in the past have hurt their citizens by inadequate informed consent and other inhumane or negligent practices by large drug companies working there to get AIDS and other drugs accepted through research studies on their people. Their people are quite suspicious of drugs in general, and people have been found deceased from AIDS there with their cabinets full of HAART drugs which they were given but did not take.

With a literacy rate of 17% in this country, and much less than that for women, the counselling and education aspect is paramount and is the challenge that my husband has undertaken as his part of the study to help men and women communicate better. He has trained counsellors to work with groups, now ongoing, consisting of women only, men only, and men and women together. Anyone in the study taking the drugs can invite their partners to participate in the counselling and communication groups even if they are not in the medical part of the study.

Cris Have you prescribed LDN for any other diseases, and if so, what was the outcome?

Jaquelyn M I have worked with crohn’s (mostly adolescents and children and a few adults), multiple sclerosis, chronic fatigue syndrome, fibromyalgia, parkinson's, and cancer patients. Everyone to whom I currently prescribe LDN, feels positive about the results, some ecstatically so. Some were disappointed that their illness was not reversed, particularly the MS patients, but eventually grateful that they felt stronger and better generally and were no longer progressing.

My husband and I have been taking it for three years now and we love it; wethink it is one of the best anti-aging agents around, and it definitely helps mood and libido as well as immunity. I have all my friends on it and some swear they never get ill anymore even with extensive travelling schedules, and wouldn't give it up for anything.

Cris Most of your fellow medical practitioners aren't even aware of LDN as a treatment protocol, and those that are can be dismissive. Have you had your share of detractors?

Jaquelyn M Actually most of my fellow practitioners happen to be autism specialists and alternative or anti-aging doctors, and are for the most partgrateful to have another therapy in their armamentarium to treat difficult populations. I've heard a lot of stories about patients having difficulty even getting a prescription, however, and the ignorance of my colleagues to even investigate the situation is very disheartening.

Cris If you have experienced opposition or adverse times, what helped you maintain your sense of purpose and resolve?

Jaquelyn M Primarily what has helped me the most is the support and love in a wonderful marriage of 33 years to a rare man who has actually gone beyond patriarchy and truly honors and enjoys having an empowered woman for a partner. And needless to say it has been especially heartening to see children previously thought to be untreatable getting better and being enabled to have much more independence in their lives than ever thought possible with the knowledge and treatments now available, including LDN.

Writing a successful book on the biomedical treatment of autism ‘Children with Starving Brains’ that has sold 50,000 copies and been translated into three and soon to be five different languages has also given me a lot of satisfaction, inspired by the love for my wonderful granddaughter with autism who though not completely recovered, has definitely benefited from my efforts.

Cris Patients themselves say LDN is effective across a broad range of conditions linked by immune system dysfunction, but their views and testimony are largely ignored. Why do you think that is?

Jaquelyn M For one thing, autoimmune conditions are extremely complex and poorly understood by even most medical professionals, much less the lay public.Fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivities are a few of these disorders that have up until quite recently been considered ‘psychosomatic’ and not ‘real’ illnesses by many in the past who had no idea what was causing the illnesses, or any knowledge of how to treat these kinds ofpatients. The sheer increase in these disorders has brought much more knowledge and understanding currently, so there is hope that these kinds of views will be more honored and investigated now than in the past.

Secondly, LDN being made from a generic drug that no one can own creates a situation where large research studies that can only be conducted by wealthy drug companies will never happen, as corporate profits are not a motivation.

This is why I have gone to Africa to get a study done. Also, that country stands to benefit the most from an inexpensive non-toxic remedy that could help millions of unfortunate persons there with HIV+ status to survive if our study proves it to be effective, and especially if we can get it manufactured there. As more studies are conducted, I believe the situation will change.

Unfortunately, I believe that many busy doctors after starting practice get their primary continued medical education from drug reps, and drug reps are not about to talk about (or give samples of) a cheap generic drug that might compete with the profits being made by pharmaceutical companies.

Cris Dr McCandless, I appreciate you making time for this interview. Before we wrap up, I'd just like to say ... thank you sincerely for championing the investigation of a treatment with much potential to alleviate suffering, but as yet very little support.

Jaquelyn M You are very welcome; I hope many people take advantage of the knowledge and experience you are offering them.

(1) Jaquelyn McCandless, MD, Certified by the American Board of Psychiatry & Neurology, Autism Specialist and Physician Trainer, Author, ‘Children with Starving Brains, a Medical Treatment Guide for Autism Spectrum Disorder’ and ‘Flesh & Spirit, the Mystery of Intimate Relationship’ both by Bramble Books.

(2) Cris Kerr, Administrator, casehealth.com.au




(2) Cris Kerr, Administrator, casehealth.com.au
_________________
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MesajTarih: Cmt Arl 27, 2008 6:19 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Interview with
Dr Jaquelyn McCandless
July 2008

Dr McCandless
How and when did you first learn of the potential
benefits of low doses of naltrexone (LDN), and at
what point did you realise you wanted to investigate
that potential further?



Jaquelyn M In early 2005 the lab director of Immunosciences, Dr Ari Vojdani, mentioned to me that the immune panels I was conducting on children with autism very much resembled the panels on MS patients he was finding in his laboratory. Soon after that I happened to come upon a website about patientreported treatments and noticed LDN being high on a list of therapies being used to help MS patients.

I looked up LDN on the www.lowdosenaltrexone.org site and also read in the autism literature about studies that had been done with varying doses of naltrexone a decade before with varying but some success, the researcher shoping that naltrexone might obviate the necessity to put the children on a casein free/gluten free diet to combat the opiates thought to be from the undigested large peptides going to the brain as caseo-opioids and gluteoopioids. Naltrexone did not satisfy their desire for that outcome, and compliance was very bad in their studies because of the terrible taste of this opioid antagonist for children who for the most part could not swallow capsules.

The main thing that came out of these few earlier studies was that naltrexone could be helpful for some self-injurious children. (Note: We now know that the main cause of self-injury in autism is extreme pain in inflamed guts but children who cannot speak cannot convey the source of their pain.) Nothing was noted then about any immune benefit, and I am not sure anyone knew yet at that time about the importance of endorphins to immunity. I thought, “Maybe this could help my autistic patients”.

I tried it for my granddaughter Chelsey and a few others who did not like it because of the bitter taste. I asked Dr Tyrus Smith at Coastal Compounding in Savannah, GA if he would help me create a transdermal carrier that would be effective, and he came up with a cream made with oil from the emu. I found it to be odorless, hypoallergenic, and extremely effective, and parents could apply it to the bodies of their already sleeping children when they, the parents, went to bed.

Parents began reporting, sometimes the very next day or within a few days, a fting of mood when their children awoke in the morning, calling it the ‘happy cream’. The thing they loved the most was that the children started being more li sociable, playing with their siblings and relating to their fathers for the first time. I have received many such reports since starting to prescribe LDN for children with autism.

Cris You've prescribed LDN for Autism and have reported on successful outcomes. What's your overall observation of the likelihood of LDN benefiting patients with Autism?

Jaquelyn M I have a large database that collected over 200 reports from patients until I finally stopped collecting them, with 75% showing a positive response to LDN. For autism, a very complicated and multi-factorial disorder needing varying therapies, this is considered a high benefit rate.

LDN is by no means a sole treatment for autism, but ideally accompanies dietary restriction, healing gut problems, nutrient protocols, and detoxification protocols. Parents like knowing that it is helping their children's immune system, though this benefit does not show up for awhile; but they particularly report liking the mood elevation, the socialization, and better cognition and language that occurs in many children. It is also very easy to apply and is inexpensive, which they also like.

I routinely require all of my own patients with autism to be on the casein/gluten free diet, but when I did a study on a larger group that had children who were not on dietary restriction, I began seeing hyperactivity and insomnia as a side effect to LDN in about 15% of the children. Since one of the aspects of autism is gut inflammation and ineffectiveness of the DPP-4 enzyme which is necessary for proper breakdown of the large peptides into amino acids, I see this side effect as a clue that the children would benefit from dietary restriction, and when parents agree and implement the diet often these side effects are ameliorated, but not always. Some children have had to stop LDN because the interference with sleep was intolerable for the parents and the rest of the family.

Giving an opioid antagonist even in a tiny dose to children who may have opioid-like substances in their brains from their diets can apparently cause a withdrawal reaction that manifests as hyperactivity. Sometimes cutting the dose down would help, sometimes enforcing the diet would help, and sometimes the kids just got used to it and began calming down and some just had to stop its use. Even in the face of severe insomnia and hyperactivity, many parents were reluctant to stop it because of their pleasure at seeing their child be sociable for the first time. This actually became an incentive for some to finally tackle the restrictive diet, which brought even more health benefits.

One year ago I queried the three pharmacies most known for compounding for autism and learned that over 10,000 prescriptions had been compounded for

LDN just by those three in the two years since being introduced by me to the autism community. Dr Smith who created the transdermal cream had generously given out his formula for the cream to at least 50 pharmacies, including firms located in Hong Kong, Scotland, and Israel where I had gone to teach doctors the bio-medical approach to autism, including the knowledge of LDN.

Cris You're presently in Mali with your husband, Dr Jack Zimmerman, trialling LDN for HIV. How is that progressing and are the results to-date in-line with or outside your early expectations?

Jaquelyn M I performed a series of immune tests on a group of children with autism, and discovered that 90% of them raised their CD4+ cell count in that 16-week period, and thought, "This has to go to Africa." I made some enquiries and learned that Dr Bernard Bihari, the discoverer of the clinical benefit of LDN in AIDS patients in 1985, had written a protocol and attempted to implement a research study in Mali Africa a few years before. This study could not get adequate funding and had been laid aside.

I was led to Mr. Seyni Nafo from Mali who had spoken of this attempt to do a study in his country in one of the early annual LDN conferences and who wasvery desirous of it being resurrected. With Mr. Nafo's invitation to come to Mali to look into the research possibilities and meet the professionals there in Bamako who might conduct the proposed study, and my husband's willingness to conduct a social/communication study alongside the medical research with me; we went in the winter of 2006, liked what we saw and the people we met, and proposed the revival of that study.

The challenges have been major, one of them being the language and distance problem, but phones, faxes and internet have been powerful tools in working together between the two countries and to carry this project forward. Another challenge has been finding groups or persons to contribute to funding for the study: We were certainly surprised at the difficulty raising funds for what we deem as a very important project.

However, with a substantial amount of our own funds along with help from many others it is actually currently in process with adult male and female participants in each of the three groups, one with LDN and placebo, one with LDN and HAART drugs, and one with HAART and placebos, and we are still gathering our total number of recruits needed with present hopes that the study will be fully recruited by the end of July and will probably complete around

March or April of 2009, about 4-5 months later than we had hoped.

The stigma associated with this disease makes those infected extremely reluctant to come forward for testing until they are already very ill, particularly the women, and this has made recruiting very slow, as by then it is too late for them to participate in the research we are doing, which is to try to show that LDN can prevent the inevitable loss of CD4+ cells until the patient finally has full blown AIDS leading to their demise.

We have had to go back to the drawing board several times for any changes; Mali has strict IRB regulations based upon US IRB regulations. We have found that many Africans are fearful of American drug studies that in the past have hurt their citizens by inadequate informed consent and other inhumane or negligent practices by large drug companies working there to get AIDS and other drugs accepted through research studies on their people. Their people are quite suspicious of drugs in general, and people have been found deceased from AIDS there with their cabinets full of HAART drugs which they were given but did not take.

With a literacy rate of 17% in this country, and much less than that for women, the counselling and education aspect is paramount and is the challenge that my husband has undertaken as his part of the study to help men and women communicate better. He has trained counsellors to work with groups, now ongoing, consisting of women only, men only, and men and women together. Anyone in the study taking the drugs can invite their partners to participate in the counselling and communication groups even if they are not in the medical part of the study.

Cris Have you prescribed LDN for any other diseases, and if so, what was the outcome?

Jaquelyn M I have worked with crohn’s (mostly adolescents and children and a few adults), multiple sclerosis, chronic fatigue syndrome, fibromyalgia, parkinson's, and cancer patients. Everyone to whom I currently prescribe LDN, feels positive about the results, some ecstatically so. Some were disappointed that their illness was not reversed, particularly the MS patients, but eventually grateful that they felt stronger and better generally and were no longer progressing.

My husband and I have been taking it for three years now and we love it; wethink it is one of the best anti-aging agents around, and it definitely helps mood and libido as well as immunity. I have all my friends on it and some swear they never get ill anymore even with extensive travelling schedules, and wouldn't give it up for anything.

Cris Most of your fellow medical practitioners aren't even aware of LDN as a treatment protocol, and those that are can be dismissive. Have you had your share of detractors?

Jaquelyn M Actually most of my fellow practitioners happen to be autism specialists and alternative or anti-aging doctors, and are for the most partgrateful to have another therapy in their armamentarium to treat difficult populations. I've heard a lot of stories about patients having difficulty even getting a prescription, however, and the ignorance of my colleagues to even investigate the situation is very disheartening.

Cris If you have experienced opposition or adverse times, what helped you maintain your sense of purpose and resolve?

Jaquelyn M Primarily what has helped me the most is the support and love in a wonderful marriage of 33 years to a rare man who has actually gone beyond patriarchy and truly honors and enjoys having an empowered woman for a partner. And needless to say it has been especially heartening to see children previously thought to be untreatable getting better and being enabled to have much more independence in their lives than ever thought possible with the knowledge and treatments now available, including LDN.

Writing a successful book on the biomedical treatment of autism ‘Children with Starving Brains’ that has sold 50,000 copies and been translated into three and soon to be five different languages has also given me a lot of satisfaction, inspired by the love for my wonderful granddaughter with autism who though not completely recovered, has definitely benefited from my efforts.

Cris Patients themselves say LDN is effective across a broad range of conditions linked by immune system dysfunction, but their views and testimony are largely ignored. Why do you think that is?

Jaquelyn M For one thing, autoimmune conditions are extremely complex and poorly understood by even most medical professionals, much less the lay public.Fibromyalgia, chronic fatigue syndrome, and multiple chemical sensitivities are a few of these disorders that have up until quite recently been considered ‘psychosomatic’ and not ‘real’ illnesses by many in the past who had no idea what was causing the illnesses, or any knowledge of how to treat these kinds ofpatients. The sheer increase in these disorders has brought much more knowledge and understanding currently, so there is hope that these kinds of views will be more honored and investigated now than in the past.

Secondly, LDN being made from a generic drug that no one can own creates a situation where large research studies that can only be conducted by wealthy drug companies will never happen, as corporate profits are not a motivation.

This is why I have gone to Africa to get a study done. Also, that country stands to benefit the most from an inexpensive non-toxic remedy that could help millions of unfortunate persons there with HIV+ status to survive if our study proves it to be effective, and especially if we can get it manufactured there. As more studies are conducted, I believe the situation will change.

Unfortunately, I believe that many busy doctors after starting practice get their primary continued medical education from drug reps, and drug reps are not about to talk about (or give samples of) a cheap generic drug that might compete with the profits being made by pharmaceutical companies.

Cris Dr McCandless, I appreciate you making time for this interview. Before we wrap up, I'd just like to say ... thank you sincerely for championing the investigation of a treatment with much potential to alleviate suffering, but as yet very little support.

Jaquelyn M You are very welcome; I hope many people take advantage of the knowledge and experience you are offering them.

(1) Jaquelyn McCandless, MD, Certified by the American Board of Psychiatry & Neurology, Autism Specialist and Physician Trainer, Author, ‘Children with Starving Brains, a Medical Treatment Guide for Autism Spectrum Disorder’ and ‘Flesh & Spirit, the Mystery of Intimate Relationship’ both by Bramble Books.

(2) Cris Kerr, Administrator, casehealth.com.au




(2) Cris Kerr, Administrator, casehealth.com.au
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"
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MesajTarih: Cmt Arl 27, 2008 6:26 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Interview with
Dr Skip Lenz, Pharmacist
July 2008

Skip
How and when did you first discover the potential benefits of low doses of naltrexone (LDN)?


Skip L A patient called the pharmacy in 1999. He’d heard of this new drug and wanted to know if I knew anything about it. I contacted Dr Bihari and had several conversations with him prior to us dispensing it. Several months and several dozen patients later, we started to hear of very positive effects.

Cris The compounding of low doses of naltrexone needs to be exact and of the highest possible quality and consistency. Were there any early lessons learned when you first began compounding LDN, and if so, what effect did that have on your compounding procedures?

Skip L We started compounding using the commercial tablet, but we found the patients taking capsules compounded from commercial tablets were not getting the same benefits as the patients who took capsules compounded with naltrexone powder. It’s now 2008 and we’ve learned a great deal since then. We now add food coloring to ensure the naltrexone is distributed evenly through each compounded capsule, and we now have our capsules assayed. The additional checks and balances we’ve introduced have resulted in an average distribution range of 99.7% to 100.3% of active compound in each capsule, exceeding any accuracy range published to-date.

Cris At what point did you realise you wanted to learn more about LDN?

Skip L Within the first few months of hearing about it, in 1999.

Cris How many patients are presently using Skips Pharmacy to fill their prescriptions, and what is the degree of positive or negative feedback you’ve received? Have you recorded and measured that feedback to share with others?

Skip L At present we’re filling prescriptions for over 10,000 patients. We felt it was very important to track and measure feedback, and as a result we’ve recorded that 83% of patients using our pharmacy have a positive response to LDN.

Cris Since becoming more outspoken on the benefits of LDN and devoting more of your time to supporting patients taking LDN, what have you learned or experienced?

Skip L Each patient is different, so each time we dispense LDN we conduct an N=1 study. The power of the internet is extreme when it comes to any untoward effects; that is to say, there is a reverse-placebo effect that is inevitably highlighted through the internet. When one patient has an unexplained untoward effect, the first thing they blame is the filler. At the New York Academy of Science, an issue was raised that Calcium carbonate was not a good filler. The next year, at the National Institute of Health, I presented a paper on the disintegration profile of Calcium Carbonate and suggested that because of its inherent compact-ability, it was inappropriate to use as a filler. We then suggested Avicel would be the best filler because its hypo-allergenic and releases immediately, which is a highly desirable characteristic for this particular protocol. Subsequently an urban myth has grown around the use of Avicel, suggesting a large proportion are allergic to it. This is not true, yet it is still perpetuated.

Cris With regard to LDN, what aspects, if any, are you most concerned about?

Skip L I’m concerned about the uncontrolled growth of patients using LDN without any concern for the science. We are getting more and more enquiries about LDN for diagnoses that do not have an auto-immune vector. Subsequently, if they begin LDN and the product fails, the medical establishment can point to LDN as another example of quack medicine.

Cris Are you aware of the range of diseases suffered by patients who fill their prescriptions through your compounding pharmacy, and if so, what are some long-term successful examples?

Skip L Our primary focus has always been MS. We have patients that have had no exacerbations in over 5 years. The longest time between exacerbations has been 9 years. This is significantly longer that any published data on any other MS drug.

Cris With regard to LDN and the knowledge you’ve gained through patient support, what do you believe are key factors in successful patient outcomes or failures?

Skip L Realistic expectations most definitely improve outcomes for those starting on LDN. Over the years there’ve been hundreds of stories on the internet suggesting LDN is a miracle cure for many diseases. But, when patients are encouraged to slow down and do some research first, they learn what they can and can’t expect from LDN. They learn LDN is not a miracle cure, but that it can reduce their exacerbations and decrease the rate of their progression. Those who know what to expect are those most likely to continue with the therapy, and subsequently benefit from it.

Cris You provided sponsorship for a couple of the now annual LDN Patient Conferences, and your wife Cyndi and son Adam have been heavily involved in videotaped records of those conferences. What first prompted this extended family involvement, and how has that impacted on your family?

Skip L I was going to the NIH conference and Cyndi asked to come along. At the time she was a film student and wanted to test her ability to create a documentary on LDN. Adam was also studying digital media at UCF and was our AV guy. After each conference we’ve filmed, there has been a coming together of the family around getting this information out.

Cris Patients themselves say LDN is effective across a broad range of conditions linked by immune system dysfunction, but their views and testimony are largely ignored. Why do you think that is?

Skip L The scientific establishment holds anecdotal data as invalid. Physicians have become afraid of litigation stemming from the prescribing of novel drugs. We have forgotten that the vast majority of drugs available in the world are the result, not of well controlled placebo double blinded cross over studies, but of empirical experimentation by physicians.

Cris Skip, I appreciate you making time for this interview. Before we wrap up, I'd just like to say ... thank you for everything you do to support patients, and thank you for continuing to provide a consistently high quality compounding service that’s so integral to success with LDN -and is ultimately, a key partnering factor in the alleviation of suffering.

(1) Dr Skip Lenz, Pharmacist, Skips Pharmacy, Florida, USA
(2) Cris Kerr, Administrator, casehealth.com.au
_________________
"SEVGİ EMEK İSTER"
"SEVMEK İÇİN YÜREK; SÜRDÜRMEK İÇİN EMEK GEREK"
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En son rsevinc tarafından Pzr Arl 28, 2008 7:22 pm tarihinde değiştirildi, toplam 1 kere değiştirildi
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MesajTarih: Cmt Arl 27, 2008 9:38 pm    Mesaj konusu: Alıntıyla Cevap Gönder

LDN Research Trust - Fact Sheet 2008
Telephone: 0871 989 9666
Email: contact@ldnresearchtrust.org
www.ldnresearchtrust.org


Low-dose Naltrexone in the Treatment of Multiple Sclerosis Dr Bob Lawrence MRCS; LRCP

Naltrexone is a class of drug known as an opiate antagonist. Its normal use is in treating addiction to opiate drugs such as heroin or morphine. The dose used for this purpose is usually between 50 and 150 mg each day.

Low-dose Naltrexone (LDN) has been used in the treatment of MS in the USA since 1985, but is relatively new in the United Kingdom. Despite the fact that the drug is used at a very low dose, the occurrence of significant introductory or long-term side effects cannot be excluded.

This method was devised and subsequently developed by Dr Bernard Bihari, a neurophysician in New York, USA. Dr Bihari is qualified in Internal Medicine, Psychiatry and Neurology, but has recently retired from practice. The main website is www.lowdosenaltrexone.org

The introductory dose is just 3 mg for the first month of treatment It has been reported that those receiving this drug in the treatment of MS experience a range of benefits, including reduced spasm and fatigue, and improvements in bladder control, heat-tolerance, mobility, sleep, pain, tremor and others. After this period (in the absence of any introductory side effects), and for greater therapeutic response, the dose can be increased to the current maximum recommended dose of 4.5 mg per day, to be taken between 9 at night and 3 in the morning. LDN only stays in the system for 4 hours. For those unable to tolerate even the 3 mg dose, lower doses of 1 or 2 mg are available. Such doses are intended to introduce the therapy more slowly, allowing more time for the necessary endorphin response to develop.

How Naltrexone Works:
The benefits of the drug are apparently due to the temporary inhibition of endorphins (a natural pain-killer, produced in the brain). This results in a reactive increase in the production of endorphins, which should result in a reduction of painful symptoms, and an increased sense of wellbeing.

Increased levels of endorphins should be expected to stimulate the immune system, promoting an increase in the number of T lymphocytes. This effect was observed in Dr Bihari's research. This increase in T-cell numbers apparently restores a more normal balance of the T-cells such that the effects of the disease process are significantly reduced. It has been observed that in those suffering the relapsingremitting form of MS the number of relapses is reduced, and the rate of progression of the disease is diminished. In chronic progressive MS (either primary or secondary) there seems to be a similar reduction in the progression of disease symptoms.

Dr Bihari's research suggested that no one receiving this treatment as a regular therapy has experienced a relapse while actually on the treatment. Occasionally however, there may be a short-term increase in symptoms during, for example, periods of infection or stress. This arises from previously active lesions already present in the brain or spinal cord.

Despite these promising findings it must be emphasized that a positive beneficial response to this treatment cannot be assured or guaranteed.

The Use of Low-dose Naltrexone in MS, and the Occurrence of Side Effects Introductory Symptoms
When starting LDN there might be a temporary increase in MS symptoms such as weakness, changes in sensation, muscle spasm, pain, fatigue or tiredness. These initial symptoms may also include changes due directly to the altered level of brain endorphins, such as disturbed sleep, occasionally with vivid, bizarre and disturbing dreams. These symptoms usually disappear within the first week of treatment, and are replaced by improvements in specific symptoms.

The initial increase in symptoms can also be explained when we consider the manner in which the drug works. Contrary to the common belief that MS is due to over-activity of the immune system, MS actually occurs due to a reduction in immune system activity. Specifically, it is the reduction in the number of the suppressor T-cells within the immune system that allows CD4 helper T-cells to do damage. Thus, during an acute relapse the overall number of T-cells is reduced, the normal balance of helper and suppressor T-cells is disrupted, and helper T-cells tend to predominate. This is most pronounced during an acute relapse, but a similar situation occurs although perhaps to a lesser extent, in chronic progressive MS.

It has been demonstrated that in the presence of LDN, the numbers of T-cells may increase by more than 300%. Therefore, when the number of T-cells is initially increased, the predominance of CD4 helper T-cells may increase the intensity of the MS, temporarily increasing some symptoms. However, as the number of T-cells continues to increase the normal balance of suppressor to helper T-cells is restored, the activity and intensity of the disease process is reduced, and symptoms once again diminish.

In less than five percent of cases treated, increased introductory symptoms may be more severe or more prolonged than usual, lasting sometimes for several weeks. Rarely, symptoms may persist for two or three months before the appropriate beneficial response is achieved. In this situation, an ultra-low dose may be introduced to provide a gentler introduction to the drug.

Symptoms Related to the Endorphin Response
If the endorphin response is rapid and significant, there may also be some additional symptoms related to the increased level of endorphins, including nausea and constipation. The nausea usually fades within a few days, and can be minimized by taking a lower dose of the drug until the symptoms lessen. The constipation may take two or three weeks to resolve, during which time additional supportive measures may be required.

If constipation has been a symptom prior to LDN treatment, this might be related to the MS itself, or it could be due to the consumption of foods known to cause sensitivities, such as cow’s milk or wheat. Such food sensitivities are known to promote a range of symptoms collectively referred to as irritable bowel syndrome (IBS). IBS symptoms can include abdominal bloating, flatulence, gastric or abdominal pain, diarrhoea or constipation, or a condition alternating between the two. IBS can also increase urinary symptoms of frequency or urgency.

If constipation has been a problem in the past, it is vital that measures should be taken to minimize this before starting LDN. You should eat plenty of fresh or dried fruit, and fresh vegetables. In addition, food sensitivities should be avoided by excluding foods most likely to cause the problem, that is, cow’s milk and wheat.

Stool softeners such as Lactulose, Codalax, Docusate sodium (Dioctyl or Docusol) may be used. Bowel stimulants such as Dulcolax or Senokot may be more effective, but should be used only occasionally or avoided if possible, as there will be a tendency to become dependent upon them. Bulking agents such as Celevac, Fybogel, or Normacol may be useful, but tend to be less effective than stool softeners.

Commercial laxative bought over the counter at the chemist’s often contain phenolphthalein. These products should be avoided completely, as the substance is highly addictive with a rapidly acquired dependency. They appear to solve the problem initially, but continued use of such products will make the constipation much worse!

Symptoms Related to the Inclusion of Lactose Filler
It has become apparent that some patients using LDN with lactose filler have experienced increasing muscle stiffness and/or joint pain after a few weeks of therapy. This delayed increase in symptoms is believed to be due to an increased sensitivity to the lactose filler used in the LDN supplied by some pharmacies.

Symptoms Related to Prior Use of Opiate Analgesics
Occasionally, other transient symptoms have included severe pain and spasm, headache, diarrhoea or vomiting. These additional symptoms appear to be associated with previous frequent use of strong analgesics, which create addiction and dependency, thus increasing the body’s sensitivity to pain.

Therefore, it is vital that all strong analgesics, including opiates such as codeine, co-hydromol, cocodamol, dihydrocodeine, tramadol, morphine, pethidine, and diamorphine should be avoided for at least two weeks prior to treatment with LDN.

Symptoms Related to the Intrinsic Toxicity of the Drug
From toxicity studies of naltrexone in the early 1980’s, reversible liver changes were found to occur only in those receiving doses higher than 300 mg per day. This is on average one hundred times the dose used in LDN; that is, the dose of LDN is just 1% of that shown to cause even reversible liver changes. The possibility of adverse side effects due to drug toxicity cannot be entirely excluded, but the likelihood of damaging side-effects is believed to be minimal, as the drug is used at such a low dose. Long-term use of LDN has not yet been evaluated by a trial. However a trial is planned, and it is hoped that it will be conducted in 2008 when adequate funding has been found.

In the meantime, due to possible toxic effects of long-term use of LDN on the liver and kidneys, it is required that anyone suffering previous liver or kidney problems should report this condition before starting therapy. The risk is believed to be minimal, however, as the dose of the drug is extremely low, and it is expected to be metabolized and excreted from the body within three or four hours of ingestion.

Suggested Method of Therapy
Take 3 mg daily for the first month, then 4.5 mg daily thereafter. If the 3 mg dose is hard to tolerate, doses of 1 or 2 mg may be used instead until your body adjusts. If you notice an increase in symptoms when taking 4.5 mg, it might indicate that this dose is too high for you. In this case lower the dose, and improvements should become apparent.

Contraindications and Special Precautions:
LDN stimulates the immune system, whereas many of the drugs routinely used by the NHS in the treatment of MS suppress the immune system. Therefore, LDN cannot be used whilst taking steroids, beta-interferons, methotrexate, azathioprine, mitoxantrone or any other immune-suppressant drug. If there is any doubt, please submit a full list of the drugs you are presently taking so that their compatibility can be assessed. Note: LDN can be taken with copaxone, as this is not an interferon.

LDN Dosage update
We receive some phone calls from people that are experiencing problems adjusting to LDN. Here are a few guidelines.

Starting dose
Normally 3 mg
If spasms or stiffness are a symptom before starting, then a lower starting dose of 2 mg should be used.
In severe cases a starting dose of 1 mg should be used. Increasing dosage
LDN can usually be increased from 3 mg to 4.5 mg after a month.
In the case of side effects or spasms it is best to increase the dosage 0.5 mg at a time, normally in 2- week stages.
If the higher dose has an adverse effect at any time, it is best to reduce the dose and try again when the side effects have gone.

Continuing Dose
With LDN the dosage is subjective. Some people find a dose as low as 2 mg works best for them. Many men cannot tolerate a dose higher than 3 mg as it worsens symptoms.

LDN in the UK
LDN is available in liquid form, either privately or on the NHS, from Dickson’s Chemist in Glasgow. The liquid suspension cost £15 a month, and is sent by monthly recorded delivery to your home. There are no problems with fillers; it keeps for 28 days at room temperature, 56 days in the fridge. Capsules are also available at £27 monthly with Avicel filler. Further costs are involved if you live outside the UK. To find out more call Paula at Dickson’s in Glasgow on: 0141 647 8032.
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MesajTarih: Cmt Arl 27, 2008 9:46 pm    Mesaj konusu: Alıntıyla Cevap Gönder

SHARED VISION FOR HEALTH

by Cris Kerr, Administrator & Community Health Researcher
‘Case Health-Health Success Stories’ website, 23rd October, 2007



Health systems should be recording and sharing successful health outcomes ... because success breeds success ... and because when the path to success is shortened, people suffer less and productivity from the same limited health resources is enhanced.

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

In the standard western medical system, successes and failures should be recorded and shared within a framework - alternately referred to as Evidence-based or Outcome-based Medicine - with the primary goal being the application of best long-term practice in diagnosis, patient care, and treatment outcomes.

Such a framework has obvious merits but historically, the patient's perspective hasn't been sought and included as corroborating evidence. Typically, the health system;

1) doesn't place sufficient value on confirming success or failure via the patient perspective, and;
2) doesn't record or recognize success or failure when/if it occurs outside the standard medical system.

Who is in the best position to provide evidence of health success or failure? Arguably, it's the patient.

Advocacy

The Case Health online database was created to fill this gap in the health system, and advocate the value of patient testimony. I encourage individuals to freely share information on health success in the hope of making the path to health success shorter and less stressful for others.

The website collects and shares health success stories (personal or research) through an online database. Keywords are attributed to each story and this framework serves a dual purpose:

The database can be searched by symptom, condition, or treatment so patients can discuss what they've found with their doctor. The database also collects significant research findings, so analysts can gain 'insights' into cause and effect and develop theories for curiosity-driven research, or gain insight into public health statistics, benefits, or risks.

There are many ways people can contribute to their communities but most haven't considered information as one of those ways. They can help improve another person's health by sharing detailed information on how they achieved their own health success - and if they do that they contribute something more valuable than cash to their community.

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

My Case Health website recorded its first controversial Low Dose Naltrexone (LDN) treatment health success story in November 2003. A significant increase in LDN linked success stories prompted me to write the article; * 'Drug Stops Multiple Sclerosis - But Sufferer's Can't Get it'. The article highlights the growing number of LDN health success stories linked to many auto-immune based diseases, the absence of mainstream recognition of patient testimony, and; advocates for health framework reform.

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

'Case Health - Health Success Stories' is a free worldwide community health service website that collects and shares patient anecdotal evidence of success and news of significant research results. The site was created in 2001 and is located online at casehealth.com.au and casehealth.com.

Proposal - Vision for Health Reform With governments around the world presently considering or developing new health frameworks, I hope you'll agree the timing is right for visionary reform:

Our health systems should be recording and sharing health successes and failures (learnings), including patient perspectives because;

a) success breeds success and when the path to success is shortened, people suffer less, and;
b) because 'learnings' can alert us to risks associated with failure, consequently reducing risks.

What would a 'Shared Health Accomplishments and Research Environment' look like?

1. A robust, secure health IT infrastructure sharing successes so they can become repeatable and sustainable, and; sharing failures so they can be avoided.

1a. A new Medicare rebate would be paid to all Health Professionals who're prepared to spend time documenting and sharing detailed patient histories of successes and failures (learnings) through a central database. Implementing this type of framework not only acknowledges quality patient care and treatment but ensures success is repeatable and sustainable, and; guards against treatment failure.

To substantiate the integrity of submissions, the patient would confirm or counter-sign. The database would build slowly, with integrity, and therefore grow more valuable with time, delivering ever-increasing dividends for the future.

A 'weighting' would be applied to each submission, depending on the qualification of the Health Professional. Submissions by less qualified allied health professionals would initially be assigned a lower 'weighting' but would attract a higher 'weighting' as the volume of corroborating testimonies increases.

1b. In acknowledgement that any person who's achieved success or experienced failure has information of value to share, the database would accommodate all health successes and failures; including those that occur outside the standard health system. Any individual could opt to submit their health story details, that is; how they achieved success or how they failed (what they learned) - so they may contribute to the volume of knowledge. Submissions would be 'weighted' accordingly but would attract higher 'weighting' with regard to public health benefits or risks, or when the volume of corroborating testimonies increased.

1c. The framework would be governed by systems and processes that promote equity and quality, and guard against infiltration of conflict of interest, commercialisation, or bias to maintain database integrity and protect this valuable investment in the future health of all.

1e. Database searches (non-personalized details only) would be freely accessible to all, including health researchers, analysts, and the general public. Names and addresses would be protected by law, secured, and shielded in a separate database - and would therefore not be accessible via search, however; special dispensation could be given for a rare event - such as research or analysis that indicates a major public health benefit or risk necessitating deeper analysis, evaluation or validation.

When Health Systems are documenting and freely sharing all successes and failures, including patient contributions, quality and productivity from the same limited health resources will be dramatically enhanced and people will suffer less.

(1) *Alternate version entitled 'Anecdotal evidence points to relief for MS sufferers' was published on ONLINEopinion Australia's e-journal of social and political debate, 3rd January, 2006
– URL onlineopinion.com.au/view.asp?article=3905

(2) Published by OnlineOpinion 23rd October, 2007:
- URL onlineopinion.com.au/view.asp?article=6531
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MesajTarih: Cmt Arl 27, 2008 10:00 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Bad things Happen
When Good People do Nothing


by Cris Kerr, Administrator & Community Health Researcher
‘Case Health-Health Success Stories’ website, July 2008


The Low Dose Naltrexone (LDN) Treatment Protocol developed by Dr Bernard Bihari first came to my attention around five years ago, in 2003. I learned of LDN, because I valued what patients themselves said was working for them.

I’m not a qualified health researcher, but what I’ve learned from the patients themselves through collecting and sharing their health case studies has been invaluable.

I’ve learned, for example; that you’re unlikely to hear of a treatment option that has potential to halt or slow progression of a range of diseases linked by immune system dysfunction. LDN is not a cure, and not everyone achieves success with LDN … but it does work, and it’s been working for patients since the 1980s.


"No one would have crossed the ocean
if he could have gotten off the ship in the storm."

Charles Kettering


As with most medications, there can be side effects to contend with. From observations, the most common is initial sleep disturbance, and; in the case of some diseases such as progressive forms of Multiple Sclerosis, there’s also a possibility of exacerbation in the first six months of treatment.

I’ve also learned from observations that those who don’t succeed with LDN often have a long and recent history of medication reliance, or have deferred making complementary lifestyle changes. In particular, abrupt cessation of opioid-based (narcotic) pain medications, steroids or other immune system suppressants following a lengthy period of reliance can result in withdrawal symptoms or rebound effects, and hence, abandonment of LDN as a treatment option.

This is an understandable ‘catch 22’. We want the ‘high impact’ health fix for many reasons: We can’t afford time off work or for our boss to discover our health’s been compromised, or we have families relying on us to care for them – and so we lean on the health solution that helps us get on with our day-to-day lives with the least interruption - but not necessarily in the least invasive way.


“The world hates change,
yet it is the only thing that has brought progress.”

Charles Kettering


Just as it takes more time and more precision to drive in a nail with a hand-held hammer than it does a sledgehammer, there’s far less scope for error with LDN, and hence, a greater need for patient research and preparation, protocol precision and patience. Yet surprisingly, clinical trials of low doses of naltrexone have diverted from Bihari’s well-established and successful protocol; as did a German clinical trial that switched to morning doses in response to patient sleep disturbance, and hence, did not achieve the same degree of successful outcomes.*


“The good we secure for ourselves is precarious and uncertain
until it is secured for all of us and incorporated into our common life.”

Jane Addams


Clinical trials of LDN are needed, but as some would need to run for six to twelve months or longer, they’d be costly. Naltrexone has long been ‘off-patent’, so the pharmaceutical companies that initiate clinical trials are unlikely to perceive this particular unmet market need as potentially profitable and worthy of investment.

Commercialism can benefit markets - but there are distinct areas where commercial markets should not dominate, infiltrate, conflict, or otherwise influence to the detriment of the greater public good. Indeed, the story behind LDN infers the health market scales have long been tipped too far in favour of commercialism and are in need of re-balancing.

‘Optimum quality of life’ is a basic human right that should stand tall, above all other rights. It is sacrosanct and must therefore be protected from the taint of ‘conflict of interest’. Societies thrive in an environment of fair play and balanced needs, and there is no greater need for fair play and balance than in health.


"Man Cannot Discover New Oceans
Unless He Has the Courage to Lose Sight of the Shore"

Andre Gide


Meanwhile, a low-cost treatment with a reasonable safety profile and reasonable potential to alleviate human suffering is still being disregarded and summarily dismissed. Our fellow humans - our mothers, fathers, partners, children, friends, and neighbours – have been, or are still being denied a treatment option that might improve their quality of life or prolong their life – are being denied a chance where there may otherwise be none – a situation that is unjust, senseless, sad and haunting if you dwell, as I do, on its implications.


"We should all be concerned about the future
because we will have to spend the rest of our lives there."

Charles Kettering


We know patients are being denied a treatment with potential to enhance their quality of life or alleviate suffering, and we know this is being justified by ‘unproven efficacy’, and in the interest of ‘patient safety’. We also know denial of this treatment option has sometimes been weighed against the possibility of litigation.

Well, there are many ways to do harm. You can directly harm by doing something, and you can indirectly harm by doing nothing. Through a brilliant piece of satire, the final episode of the Jerry Seinfeld series confronts us with four observers who indirectly cause harm to another human being by doing exactly that, nothing.


"Never doubt that a small group of thoughtful, committed citizens
can change the world. Indeed, it is the only thing that ever has."

Margaret Mead


Most current knowledge of LDN efficacy and safety remains limited to a handful of small clinical trials and patient testimony, which is spread randomly from one patient interest group to another, making it easy for the scientific community to ignore, disregard and summarily dismiss as they would a single grain of sand. To divide is to conquer, and while this continues, nothing will change.

Case Health has been striving to bring the evidence together in one central database, and has created this free e-book to help build awareness of the collective ‘volume value’ potential of patient testimony as case studies. The collective is greater than the single, and a grain of sand can become a beach stretching as far as the eye can see.

It’s my greatest hope Case Health’s increasing volume of patient testimony will result in the scientific community acknowledging presently held tenets are not static or absolute, and that a central store of corroborating patient testimony;

• has immense potential to provide valuable public health ‘insights and learnings’;
• can help validate successful health outcomes, and;
• can attain ‘volume value’ in its own right.


"In ancient China, the doctor was only paid when the patient was well.
In modern health systems, perhaps your visible success
should depend on health outcomes ... ",

HRH The Prince of Wales, Prince Charles


I maintain faith our inherent human capacity for compassion and fairness will influence those who can help overcome resistance and progress the return of patients to their rightful place at the core of our health systems, in acknowledgement of the value they can add through their testimony.


“Through our scientific genius
we have made of the world a neighborhood;
now through our moral and spiritual genius
we must make of it a brotherhood."

Dr. Martin Luther King, Jr.


It’s my greatest hope governments around the world presently reviewing and implementing long-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.


‘A society grows great when old men plant trees
whose shade they know they shall never sit in.’

Greek proverb


*Ref: Dr. Evers Trial in Germany for Multiple Sclerosis (MS)
http://www.lowdosenaltrexone.org/ldn_trials.htm




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Kayıt: 30 Arl 2007
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MesajTarih: Cmt Arl 27, 2008 10:02 pm    Mesaj konusu: Alıntıyla Cevap Gönder

Media
Video News & Testimony


Video News


‘Wonder drug?’


Health Check - Article & Video by Ali Gormon, R.N.
Featuring Crohn's patient Pam Sweigart and Dr Jill Smith
Thursday, May 22, 2008 | 10:16 AM
Penn State College of Medicine, Hershey, Pennsylvania
LDN clinical trial for Crohn's Disease
ABC6 Action News, Philadelphia, Pennsylvania USA
http://www.abclocal.go.com/wpvi/story?section=news/special_reports&id=6156884

‘Wonder drug?’
Health Check - Article & Video by Ali Gormon, R.N.
Featuring Multiple Sclerosis patient Lori Miles
CBS47 News, Jacksonville, Florida (on Youtube)
http://www.youtube.com/watch?v=Kz52KK5IhOc

‘Drug Addiction Medication May Treat Other Diseases’
Health Watch - Article & Video by Dr Max Gomez
Featuring MS patient Ronnie Raymond and Dr David Gluck
May 26, 2008 7:33 am US/Eastern
CBS WCBSTV News Report, USA
http://wcbstv.com/topstories/lo.dose.naltrexone.2.732830.html

Video Testimony


Vox Pops

Second Annual LDN Conference: ‘The Future is Now’ National Institute of Health Campus, Bethesda Maryland 2006 produced By Cyndi & Adam Lenz (tdgr2productions.com)

Main: LDN Conference 2006 - ‘The Future is Now’ DVD

‘The Future is Now 2006’ DVD Montage
Pat Crowley, Dr Phil Boyle, Dr David Gluck, Mary Boyle-Bradley, Dr Jaquelyn McCandless, Dr Skip Lenz-Skips Pharmacy
http://www.youtube.com/watch?v=aA7VihTWBMU

Third Annual LDN Conference: ‘Breaking Down Barriers’ Vanderbilt University Campus - 20 October 2007 produced By Cyndi & Adam Lenz (tdgr2productions.com)
Main: http://www.youtube.com/user/TropicalDawg

'LDN Doctor Advocates Speak 2007'
Dr Jill Smith, Dr Terry Grossman, Dr Joseph McWhirter, Dr Burt Berkson, Dr David Gluck
http://www.youtube.com/watch?v=DAZ1fQKdOC8

'Dr David Gluck Speaks 2007'
Progress of Dr Mira Gironi's MS clinical trial, Italy
Progress of Dr Bruce Cree's MS clinical trial, Univ of California, San Francisco
http://www.youtube.com/watch?v=ctnm7cv-EXY

'Dr David Gluck Speaks 2007'
Dr Gluck presents Dr Jaquelyn McCandless clinical results in Autism, and planned HIV trial in Mali, Africa
http://www.youtube.com/watch?v=1N3o4ggTnUI

'Dr Patrick Crowley Speaks 2007'
Dr Crowley is in Private Practice in Scotland
He shares his survey results on 50 MS Patients
http://www.youtube.com/watch?v=kclMin66Sf4

'Dr Phil Boyle Speaks 2007'
Dr Phil Boyle is a Family Physician & Infertility Specialist
Dr Boyle shares his clinical experience in prescribing LDN
http://www.youtube.com/watch?v=1sZGQqYTVBg

‘Dr Terry Grossman Speaks 2007’
Dr Grossman presents a case study: Treatment for Stage 4 Renal Cell Cancer, Claudia Feb04
http://www.youtube.com/watch?v=XbYC0R5uKzE

'LDN Patient Advocates Speak 2007'
Janet Kunselman, Susan Benz, Fritz 'Goodshape' Bell, Anon
http://www.youtube.com/watch?v=D0HsgCgboGk

'LDN Patient Advocates – Conference Opening 2007'
Susie Sedlock and Brenda Powell opening the Third LDN Conference
http://www.youtube.com/watch?v=CND5sp2ErDg

'Noreen Martin Speaks 2007'
Noreen Martin, Author, Surviving Aids & Cancer
http://www.youtube.com/watch?v=_Nh-t3LA6e4

'Mary Boyle Bradley Speaks 2007'
Mary Boyle Bradley, Author, 'Up the Creek with a Paddle'
http://www.youtube.com/watch?v=WCTwLbRX2Ys

Documentaries


LDN Documentary

This earliest known documentary includes an interview with Dr Bernard Bihari prior to his retirement
Dr Patrick Crowley, County Kilkenny, Scotland
http://www.lowdosenaltrexone.org/_conf2006/P_Crowley1.mov

Media
Other News


News Articles


‘Telling the world how it feels’
Sydney Morning Herald, online, 24 April, 2008
http://www.smh.com.au/news/science/telling-the-world-how-it-feels/2008/04/23/1208743039836.html

'The Drug that gave me back my life'
by Sarah Spediff, Independent, Ireland, 5 May, 2008
http://www.independent.ie/health/case-studies/the-drug--that-gave--me-back--my-life-1367070.html

'Low Dose Nalrexone (LDN) and MS'
Article by Ronald Hoffman, MD, and Skip Lenz, Pharm D FASCP
Magazine of the United Spinal Association online, January 25, 2008
http://www.unitedspinal.org/publications/action/2008/01/25/low-dose-naltrexone-ldn-and-ms

'Firefighters help one of their own'
By Denise Sinclair, Daily Home online, Sylacauga, USA, 13 September 2006
http://www.dailyhome.com/news/2006/dh-sylacauga-0913-dsinclair-6i12v2419.htm

Addiction Remedy Studied For Crohn's Disease Relief
By David Wenner, staff writer for The Patriot-News of Harrisburg, Pennsylvania USA
http://www.newhouse.com/addiction-remedy-studied-for-crohns-disease-relief-2.html
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MesajTarih: Cmt Arl 27, 2008 10:43 pm    Mesaj konusu: Alıntıyla Cevap Gönder

References

(1) Low Dose Naltrexone Org – edited by David Gluck, MD - http://www.lowdosenaltrexone.org & http://www.ldninfo.org
(2) LDN Research Trust, UK – Linda Elsegood - http://www.ldnresearchtrust.org
(3) Case Health - Health Success Stories – Cris Kerr - http://www.casehealth.com.au & http://www.casehealth.com
(4) Dr M R (Bob) Lawrence, Dietary Research Ltd, Wales, UK -
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=651&CFID=4799847&CFTOKEN=68687005
(5) LDN Clinical Trial in Multiple Sclerosis – patient-funded - http://www.mscenter.ucsf.edu/research.htm
(6) All LDN Clinical/Animal Trials - http://www.lowdosenaltrexone.org/ldn_trials.htm
(7) Oral Presentation at the IV International AIDS Conference in Stockholm , June 1988 -
http://www.lowdosenaltrexone.org/ldn_aids_1988.htm
(8) Jill Smith, Professor of Gastroenterology, Pennsylvania State University, ‘Low Dose Naltrexone Therapy
Improves Active Crohn’s Disease, American Journal of Gastroenterology, Jan 11 2007 -
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&list_uids=17222320
(9) The long-term survival of a patient with pancreatic cancer with metastases to the liver after treatment with the
intravenous alpha-lipoic acid/low-dose naltrexone protocol -
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16484716&query_hl=1&itool=p
ubmed_docsum
(10) Burton Berkson, MD, PhD – presentation, National Cancer Institute meeting – April 2007 -
http://www.lowdosenaltrexone.org/_mm/Berkson_Presentation_Apr_2007.pdf
(11) Autism – dietary considerations – gluten & casein - Kalle Reichelt, M.D. 1991
http://en.wikipedia.org/wiki/Gluten-free,_casein-free_diet
(12) Agrawal YP – Low-dose naltrexone in multiple sclerosis – Med Hypotheses 2005;64(4):721-4 – Science Direct
(Elsevier) - http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WN2-4F3FDWS-
3&_user=10&_coverDate=01%2F01%2F2005&_alid=767767282&_rdoc=2&_fmt=high&_orig=search&_cdi=6950&_sort=d&_docan
chor=&view=c&_ct=2&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=2bfd6cbcf74df22fc041c216f05caa24
(13) Bernard Bihari, MD – Curriculum VITAE & papers - http://www.lowdosenaltrexone.org/bbihari_cv.htm
(14) Ian S. Zagon, PhD - Professor of Neural and Behavioral Sciences, Pennsylvania State University –
http://www.fred.psu.edu/ds/retrieve/fred/investigator/isz1
(15) Jaquelyn McCandless, MD, Jack Zimmerman, PhD – HIV clinical trial Mali -
http://www.lowdosenaltrexone.org/developing_nations.htm
(16) Experimental Evidence for Immunomodulatory Effects of Opioids, Landes Bioscience -
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=eurekah.section.10979
(17) Role of nitric oxide in inflammation mediated neurodegeneration – PMID: 12076984 -
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12076984&dopt=AbstractPlus
(18) Dr Pat Crowley, County Kilkenny, Scotland – LDN Documentary
http://www.lowdosenaltrexone.org/_conf2006/P_Crowley1.mov
(19) Dr Skip Lenz, Skip’s Pharmacy, Florida – Survey 2006 -
http://www.ms-people.com/forum/index.php?s=dfe1764bb0265b16d51eff70e4a97fa5&act=Attach&type=post&id=14480
(20) Dr Phil Boyle - http://www.fertilitycare.net/documents/LDNInfo_000.pdf
(21) Dr Kamau B Kokayi interview with Dr Bernard Bihari – September 23, 2003 -
http://www.gazorpa.com/interview.html
(22) Hughes Syndrome - The blood disease that mimics MS - Hughes Syndrome
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736&CFID=579952&CFTOKEN=15420960
(23) Wikipedia ‘low dose naltrexone’ entry - http://www.en.wikipedia.org/wiki/Low_dose_naltrexone
(24) Pediatric MS Center: ‘Promising MS Research’
www.pediatricmscenter.org/NewsLetter/Pediatric%20MS%20June%202008%20Newsletter.pdf

LDN Advocates:
(1) LDN Discussion Group - http://www.health.groups.yahoo.com/group/lowdosenaltrexone
(2) LDN Conference Media – LDN Conference 2007 – Conference DVD – Cyndi Lenz -
http://www.skipspharmacy.com/sppress/?cat=8
(3) Gazorpa – http://www.gazorpa.com
(4) LDNers - http://www.ldners.org
(5) Mary Bradley's Books - http://www.marybradleybooks.com
(6) LDN Diary - LarryGC - http://www.larrygc.com/ms
(7) LDN Discussion - http://www.ldn.proboards3.com/index.cgi
(8) LDN Forum, Germany - http://www.f27.parsimony.net/forum67727
(9) LDN Info – Crystal – http://www.crystalangel6267.webs.com
(10) LDN & Cancer – Dee - http://www.ldn4cancer.com

Permissions:
© Case Health – Health Success Stories – http://www.casehealth.com.au - Case Health Pty Ltd
Permission to reproduce the latest version of articles (articles only);
􀂙 'Those Who Suffer Much Know Much' (2008 article version), and;
􀂙 ‘Shared Vision for Health’ (2007);
is granted on the provision the articles remain unchanged/unaltered in any way, up to and including publication
details and include this permission advice. Postscript request to publishers: If you reproduce either of the above
two articles, I'd sincerely appreciate a courtesy advice.
Supporting data for this book is in the form of untested patient testimony of health success.


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