Let me copy here very interesting success story about the PSC treatment with LDN (Low Dose Naltrexone). Anybody tried LDN in PSC ?
From: moranclan07 <moranclan07@...>
Subject: [LDN_Users] Long LDN success story 14 years out of my 15 year olds life
Date: Friday, April 2, 2010, 5:39 PM
My son was diagnosed with Ulcerative Colitis (UC) in 1996.
He was only a baby.
Then in 1998 following a liver biopsy, at the tender age of 3, he was diagnosed with a rare and devastating condition, Primary Sclerosing Cholangitis (PSC), confirmed again later via follow-up ERCP when he reached school age.
At the time of diagnosis his liver enzymes were in the range 900 to 1100.
When he was first diagnosed, he was put on 5 different medications. One of those was Flagyl/metronidazol e, which he took for 6 weeks.
I believe he suffered neurological damage as a result: He began to fall all the time and it was particularly noticeable when he played soccer. After walking in the woods with his uncle, my sister's husband, he reported, "He falls too much. Something is not right.". I knew he had no balance because his brother, 2 years younger, could balance on things at the playground and at home while he could not.
His eyes became extremely sensitive, and his vision impaired. I told the doctors. All they asked him to do was walk across a three-foot area in their office. They would then look at me like I was a paranoid mother and say that they'd assess his vitamin levels.
Unfortunately I didn't make the connection with Flagyl until October 1, 2007: I went to the doctor with a bout of diarrhea (which I think I picked up in Mexico) and was prescribed Flagyl for 7 days. My vision became impaired and I began to lose balance. I fell all over the house when trying to stand. I had to hold a grocery cart to keep from falling if I ventured out. I got to the point of needing a wheelchair, but managed to avoid that by praying to God, "Please just don't let me fall!" My speech was messed up for over a year! I stuttered. I would say `red' when I meant `blue'. I still say the wrong words occasionally, though my comprehension is intact.
I suffered extreme short-term memory loss. Once a top speller, I now have to double check what I write and use spell-check. My muscles began to waste, and I suffered hearing damage. I was diagnosed with Diabetes Insipidus. Every organ, gland, muscle and nerve in my body lost blood supply due to vascular damage. I thought back to my son's experience, added that to my own, and put two and two together; Flagyl.
So 9 years after my child suffered vision, balance, and speech issues necessitating speech therapy for the next 4 years, I suffered similar impairment for 3 years following administration of the same antibiotic commonly prescribed for Crohn's, UC, and diarrhea.
Back to our early years…
During those early years I lost my husband to a heart attack, and four years later, my darling brother who'd helped fill the role of father figure for my boys. He was taken in a tragic trucking accident.
There is something about the tragic loss of loved ones that galvanizes. I would not lose my son too.
If not for the Ulcerative Colitis diagnosis, it's unlikely my son would have been diagnosed with PSC as young as he was. The test confirming his diagnosis followed an extreme Ulcerative Colitis exacerbation that saw me carrying my naked toddler to the bath tub while large amounts of bloody, bloody diarrhea gushed from him. It was quite traumatic, and I was a skeleton within a very short time. My weight plummeted to 102 pounds and I could not gain weight due to constant worry over my little blonde, blue-eyed precious baby boy.
My son is a one in 300,000 case. The Hepatologist I last saw in New York, the eminent Dr Steven Lobritto, said that his case should have been nationally recognized as he's the rarest PSC patient known (due to his age at diagnosis). Most PSC patients are diagnosed in their 50s.
No effective medical therapies are recognized for Primary Sclerosing Cholangitis (PSC). It is a slow but serious disease that can lead to liver failure and the need for a liver transplant.
He had a rash almost from the day he was born and was prescribed many different medications over ensuing years, such as cortisone cream. Basically the rash was ignored, considered only as a symptom of his Ulcerative Colitis.
I asked his first dermatologist what the rash was when he was a baby on my lap... (It was an Ulcerative Colitis rash)... doctor after doctor after doctor could not treat it. My son was embarrassed to be seen without clothes on.
A special diet was not advised. The physicians said to give him Flintstone vitamins and let him eat whatever he wanted.
I always consulted the best doctors I could for him, even hopping a plane for an appointment with a 'top' researcher and specialist in the field. He said he'd seen thousands of PSC cases and that none of them looked as good as my son. He scoffed in disbelief that he even had PSC, saying, "Your son may not even have it.". I then listed the high profile doctors that had diagnosed him, and he then admitted they were good doctors.
My son was not taking any drugs at the time, but the doctor did not at any time ask me what it was that I was doing for my son that may have been making a difference.
He called Ursodiol worthless, and said Infliximab was only used as a last resort, for those who were extremely ill. He drew my son's blood but would not prescribe either of the drugs I thought might help.
That same doctor, almost as soon as my plane hit the ground back home, was calling me on my cell. He said my son's test results had come back, that his liver enzymes were elevated, and that he now wanted an urgent liver biopsy based on his March 2006 test results:
Aspartate Transaminase (AST) 604
Alanine Transaminase (ALT) 598
Alkaline Phosphatase (Alk Phos) 755
I said how soon? He said in two weeks at the latest, but… we had no insurance and were not poor enough to get it done for free. That doctor ended up having to wait 6 months for his biopsy.
My son had been prescribed Ursodiol in the past and had taken it in spurts prior to 2004 because it was all they had. Doctors would actually get mad if he wasn't on it. Even so, he ended up taking it only for a few months due to all the conflicting advice we were given: One would prescribe, another would say not to take it, then yet another doctor would say to take it. Then a higher up doctor would say not to take it… back and forth it went. Which gastroenterologist was I to believe? Finally in 2004, I took him off it for good and it became another prescription in the drawer.
That was our life, a seemingly endless round of doctor appointments and tests, none of which brought the improved health my son and I both dearly wanted for him, and for which I prayed regularly.
In 2006 my son's MRCP (Magnetic Resonance Cholangiopancreatog raphy) came back worse than ever. For the first time he had an enlarged spleen. His liver biopsy was stage 3 of 4, yet no treatment was advised other than the controversial Ursodiol/UDCA.
I did not give it to him. Many gastroenterologists had already told me it would not delay transplant, and as mentioned earlier, there was conflicting advice around it.
(NB Now I'm glad I didn't continue with it because my son is better off! In 2009 a study showed Ursodiol caused twice as many liver transplants, three times as many esophageal varices, and twice as many deaths, and study participants were only stage 1-2 patients. They ended the study due to patient deaths. In the January 2010 Hepatology Journal: The American Association for the Study of Liver Diseases advised against the use of Ursodiol/UDCA, validating the choice I made on behalf of my son back in 2004.)
In October 2008 I found out about the importance of glutathione (an antioxidant) , and my son began IV glutathione treatments from Dr. Gurney Pearsall, a 6-hour drive away. The glutathione relieved ALL of his symptoms, so we continued with it. For a child that has never known life without fatigue, his words to me, "I feel like Superman!" were music to my ears. He was now asymptomatic, as in; NO itching, strength he had NEVER known, and NO fatigue. You can only imagine how his mother, me, felt… tears of joy!
Then early in 2009 I found out about Low Dose Naltrexone (LDN) from the internet.
We decided we wanted to try it, but I thought, 'If we're going to do this, we should do it properly and see a gastroenterologist for an assessment, so we can track if there's any document-able change. I travelled by car 2000 miles to John's Hopkins for his endoscopy, colonoscopy and liver biopsy. Their reputation is known worldwide and it's why I went there. (The Johns Hopkins Hospital, for the 19th consecutive time, earned the top spot in the U.S. News & World Report's annual rankings of more than 4,800 American hospitals.)
The 9 March 2009 colonoscopy and biopsy pathology report came in: It stated that `colonic mucosa' from the `Cecum, Ascending, Transverse, and Descending biopsies all had `active chronic inflammatory disease, cryptitis, crypt distortion, and basal plasmacytosis' , and the colonic mucosa of the Sigmoid and Rectum biopsies had `prominent chronic inflammation' .
The notation read `the changes are those of inflammatory bowel disease. There is relative distal sparing, although the overall distribution is more consistent with Ulcerative Colitis.
There was also measurable improvement in his liver enzymes, reflected in his 9 March 2009 results:
Aspartate Transaminase (AST) 54
Alanine Transaminase (ALT) 67
Alkaline Phosphatase (Alk Phos) 504
The endoscopy was clear of inflammation, H. Pylori bacteria, and best of all no esophageal varices were found… one of the greatest fears with chronic liver disease.
The liver diagnosis read ` … Overall the histologic changes in the biopsy would support an early stage (2 of 4) of primary sclerosing cholangitis. However, given the bridge of fibrosis, careful follow up is necessary.' The physicians were startled to find no inflammation in areas and barely stage 1-2 in others. Knowing this is a progressive disease without a cure and that three years ago he was stage 3, they mentioned possible sampling error. They didn't ask, and I never told them about the IV glutathione, nor did I ask for LDN. They did not seem receptive.
Personally, I was ecstatic and thrilled with the test results. They delivered real, hard evidence of the improvement we'd hoped and prayed for, and had validated the IV Glutathione treatment choice I'd gone out on a limb to make.
Like every other mother who's ever been in a similar situation, I struggled with every decision and every choice I made on behalf of my son. My quest to indefinitely defer the need for a liver transplant had seen me consult the best of the best, only to hear differing expert opinions and recommendations that typically, provided no clear path forward.
I was often forced into a position of having to weigh up all the pros and cons and make, hopefully, the right choice for my son. You can't imagine how frightening and stressful it is to feel the burden of that responsibility as you await the outcome. So to say the test results were a welcome validation for me that I'd made the right choice at the right time is an understatement: A huge weight was removed from my shoulders.
My son's health was finally improving and we could not have been more elated.
We still had some way to go though. His hemoglobin had dropped to 8.0. According to Johns Hopkins, this was due to blood loss from chronic and acute inflammation of the colon, however; he was asymptomatic and had not been losing blood in his bowel movements each day – so this result in combination with low Red and White Blood Cells set off a light bulb warning in my head which resulted in my finding out his bones weren't growing at the rate they should, AND that he had developed adolescent onset mild scoliosis.
He has laxity in his joints (double jointed), which incidentally is likely linked to his liver being unable to process the growth hormone (GH) generated by the pituitary gland in the brain, and him not having enough healthy GH receptor sites. I researched it and found that 50% of liver children do not produce enough GH or IGF-1 (which is made by the liver in response to the pituitary gland producing GH). Suffice to say that at this point I determined I needed to do further research into GH and GF-1.
The Johns Hopkins doctors prescribed Mesalamine - 5-aminosalicylic acid (brand names - Pentasa, Rowasa, Asacol, Lialda, Canasa) for the colon inflammation, and three iron pills a day. They also prescribed the controversial UDCA/Ursodiol, but I put the script away in a drawer. I gave my son a reduced dose of the iron - one iron pill per week (because supplemental iron can be damaging to the liver).
But having learned of LDN, I now wanted to see if adding LDN could spur further improvement, so whilst still at Johns Hopkins, I phoned for a consultation with a knowledgeable LDN doctor, Dr John Sullivan; simultaneously forwarding all of my son's records for his review and documentation.
Being the persistent mother I am, I then went further and arranged an appointment with Dr Steven Lobritto, a top pediatric gastroenterologist in New York who specializes in liver disease, so he could review everything. I also wanted to draw his attention to the results of my son's liver biopsy, because they inferred a reversal in progression of his PSC; from stage 3 to barely 1-2 of 4 stages.
He ordered a Doppler ultrasound with color-flow imaging of the liver, more lab-work and compared the past three years of tests. I informed him that I was not giving my son the Ursodiol and he said, "Your son has such good flow that he does not even need it." I told him about the IV glutathione.
He wrote on the hepatology orders for my son to continue with the IV Glutathione. No Ursodiol was prescribed. As my son did have chronic and acute inflammation of the colon, he prescribed Asacol. Again I was afraid he would not know about LDN and therefore would not prescribe it. And once again I put the Mesalamine/Asacol prescription in the drawer, on hold. The research and patient testimonies about LDN were just too compelling.
My son's lab work, biopsies, Doppler ultrasound, and now a leading New York children's hepatologist all backed up the way my son felt!
I filled Dr Sullivan's LDN prescription, and on 15 March 2009 my son and I both started on LDN. I had decided to take LDN at the same time so I could better understand what he was experiencing. I started my teenage son on 3mg and then moved him up to the highest dose of 4.5mg after only two weeks.
We experienced sleep disturbance on the first night only: We were up at midnight, walked around a bit, raided the fridge, then went to bed and slept heavily. The next evening we adjusted the time. My son took his LDN right before bed. He took his LDN, went straight to bed, and slept heavily. So neither of us experienced any lasting sleep issues and it has actually helped him sleep better.
There was a significant change in my son's health within two weeks: My son had suffered a 'rash' his entire life. I say 'rash', but that doesn't give the full picture: He'd get painful sores on his inner thighs and buttocks and the scars left behind looked like a teenager's acne scars. As a young man he thought of his future and how embarrassed he'd be with a girlfriend.
All the cortisone in the world would not take his rash away. Within two weeks of starting LDN, the rash he'd had his entire life cleared completely. It went away and has not returned! He was all smiles and, without any prompting, took his LDN faithfully!
In April 2009, after one month on LDN plus one iron pill per week, his hemoglobin rose to 12.5. I saw this as a positive sign that the problem was fixed.
My son has also had a severe peanut allergy his whole life. If someone even ate a peanut in the same room as him he'd start coughing. But after only two weeks on LDN, his mother, me, ate peanut M&M's in the car with him. He didn't cough. He and I were both shocked. The only thing that had changed in his life-threatening allergy to peanuts was 4.5mg of LDN nightly!
After he'd been taking LDN for three months, and seeing it helping, not hurting, I stopped taking it myself.
And as time went on there were other indicators that LDN was benefiting him:
Soon after beginning grade school, my son had a strong and immediate adverse reaction to a flu vaccination. The nurse was forced to stop the vaccination mid stream, delivering only half a flu shot. During the vaccination my son suffered immediate bloody diarrhoea and we ended up in the Emergency Room soon after... so no more vaccinations for him per gastroenterologist orders.
This is why he was not able to get the recommended H1N1 flu vaccine in 2009. My other son and I also did not get the H1N1 vaccination. Well, I had mild flu with fever for 8 days, and my other son had it for 3. We didn't get a bad case, and I attribute that to all of us taking Primal Defense Ultra Probiotics and Vitamin D3 daily.
You'd be forgiven for thinking someone suffering from both UC and PSC would be more susceptible to seasonal flu than other members within the same family, but my son, the only one in the family taking LDN for the prior 9 months, did NOT get the flu - and as members of the same family, we're together and in close quarters all the time.
Meanwhile I was still concerned with my son's low GH and IGF-1 levels, particularly as he was now around 14.5 years, a critical developmental window during which most young teenage men experience a growth spurt (he hadn't), and during which he'd developed scoliosis. Over the previous 9 months I'd raised this concern with 4 specialists who'd remained unconcerned and unmoved, so I'd gone back over previous test results with a different perspective, and for the first time noticed my son's `Bone Isoenzyme' was around 31% of `normal'.
All these factors fuelled my determination, so to demonstrate my point, I took my younger (taller) son along to an endocrinologist appointment to convince them to address it, and finally, my son was prescribed injectable human growth hormone (HGH). But in between, nine precious `growth' months had been missed, nine months in which a young man could develop a strong young back.
Back home again, I needed a local doctor. I booked an appointment with the top paediatric gastroenterologist in my area. This time I told him about LDN and IV glutathione, even emailing him documentation and information ahead of the appointment, and asked if he would prescribe LDN or IV Glutathione. At the appointment he walked in shaking his head exasperated at me. He crossed his arms angrily. He would not do what I wanted him to do for my son. I left crying to God!
Soo… I needed a new gastroenterologist: I found one, but I lied: I said my son was taking Asacol. I told the truth about his IV Glutathione, but from the response, felt that was enough for her to accept at the time and did not mention him taking 4.5mg LDN nightly.
During the first office visit the doctor asked where I was taking my son for his transplant. This startled me but I said I hadn't decided yet, probably Minnesota because they do the most liver transplants for PSC children… but I added that my goal was to avoid the need for a transplant for as long as we possibly could.
The doctor prescribed 800mg Asacol twice a day, three iron pills to take each day, and ordered a full work up: Labs, abdominal ultrasound, KUB, MRCP, colonoscopy, endoscopy, biopsies, and pathology reports. Later would come Upper GI with Barium and small bowel follow through. She was already aware of the results of the 2009 Ursodiol study, read everything I gave her about IV glutathione, and was willing to work with me on my son's many serious health issues.
On 21 December 2009, my son underwent the MRI/MRCP of his Abdomen that she had ordered. At that time, he'd been on IV Glutathione for around twelve months, and LDN for nine months:
It stated; `Again demonstrated is splenomegaly. On the MRCP there appears to be stricturing of the proximal common bile duct as well as mild stricturing of the common hepatic and distal portion of the left common duct. There is NO intrahepatic biliary dilatation (good thing) identified. There is homogeneous enhancement of the liver parenchyma and the portal vein and hepatic veins grossly patent. (very good things) Pancreas appears unremarkable. (great) Kidneys are within normal limits. There are no identified varices (miraculous/ wondrous) .'
But another problem re-emerged: My son's hemoglobin had dropped between April and December from 12.5 to 10.6, even though he still remained asymptomatic. Instead of one iron pill per week, I increased his dose to one every other day, but that was to last one week due to receiving news my father had died January 4, 2010. With the exception of LDN, everything was forgotten during this period of upheaval – iron pills, and even IV Glutathione.
Back to LDN
Twelve months ago, in March 2009, the surgical pathology report on the biopsy taken during his colonoscopy showed 'active chronic inflammatory disease, cryptitis, crypt distortion, and basal plasmacytosis' , and 'prominent chronic inflammation' , and his blood pathology report showed his hemoglobin was 8.0.
Now his 3 March 2010 endoscopy and colonoscopy showed a healthy colon: The exact words from his 3 March 2010 colonoscopy and biopsy pathology report were; ` … No crypt abscesses are seen. There are no granulomas. Glandular distortion is not appreciated or foreshortening of the glands off of the basement membrane zone. Lymphoid tissue, when present, appears appropriate for site and age. There is no surface ulceration.' The additional comment read ` … The increased number of eosinophils may reflect a process of food allergy. There are NO findings for either chronic or ulcerative colitis, active or quiescent and no granulomas for Crohn's disease.'
Also on 3 March 2010, my son's blood pathology report stated all his levels had returned to normal, and his hemoglobin was back up to 13, though I attribute some of this improvement to the injectable Human Growth Hormone he started on November 16, 2009, because it would be expected to benefit bone, muscle, cartilage, and blood.
The doctors kept telling me the drop in hemoglobin was due to blood loss, but I couldn't accept that. During all his years of illness my son's hemoglobin had always hovered around 14, even during his worst exacerbations and blood loss - so I'd been truly puzzled by the drop, especially because it occurred during a period of improving health and at a time when he had no inflammation or blood loss.
I also felt the supplemental iron could be `masking' an underlying cellular problem that needed to be addressed in a better way, perhaps with the addition of IGF-1 to the HGH (to address the lack of receptors). I have another appointment on May 7, 10 hours from my house, to see an endocrinologist knowledgeable in this area, and I hope to learn a lot more about whether IGF-1 could help.
Needless to say, whilst the blood-work results were received with relief, I was and remain curious about this particular conundrum and am still on a quest to understand `why'.
Going back to the test results… I was sitting in the gastroenterologist' s office to discuss the 3 March 2010 test results when she gave me the beautiful color photos of my son's healthy colon! I started crying and hugging her! Can you imagine the relief I felt?!
I then told his doctor he had never taken a single Asacol, and that he'd been taking LDN for the past twelve months. I told her after and not before, for obvious reasons, but more importantly, I wanted her to see for herself what LDN had done for my son so she'd consider it as a treatment for her other UC and Crohn's patients.
I was scared of what might happen. Would she refuse to treat my son? But instead she asked if my son was in a study. I said there was a study, but that I didn't live close enough. She said she'd never heard of it and to my relief, indicated she wanted to know more about it. I sent her 150 documents! Amongst them, I emphasized the Penn. State Univ Crohn's Trial results by Dr. Jill Smith, Professor of Gastroenterology.
My son and I wish every Crohn's and UC patient knew about LDN and would give it a try. I'm thrilled because LDN has worked better than ANY Dipentum, Asacol, or Sulfasalazine ever did for him. And, where Ursodiol never relieved his itching or fatigue, IV glutathione did.
I know there are hundreds, if not thousands of doctors who've seen improvement in patients taking LDN, yet who still refuse to research it further as a potential treatment option for other patients. And I also know there are doctors who've refused to treat patients when they find out they're taking LDN.
Looks like my son and I are among the lucky ones to have found this doctor with an enquiring, open mind. Yes, the truth of this dramatic improvement was there in the test results for anyone to see, but other doctors have also seen similar results and reacted very differently.
Dr Mihaela Ringheanu is very intelligent, compassionate, and speaks three languages. Perhaps she approaches things differently due to her life in Romania, a country with cultural integrity, or maybe it's because she has greater capacity for common sense intelligence. I don't know. But personally, my son and I think she's one of those rare doctors who's more concerned with what is best for her patient than she is about following strict plans of care that may NOT be working so well.
I do know as a mother who would do anything for her son, I have a renewed respect for this doctor whose professionalism and skills are now partnering me in the best interest of my child. My prayers have been answered! Wesley and I have tremendous admiration for Dr Ringheanu, the only doctor who took the time to listen, believe, research, and do a thorough work-up involving biopsies, labs, MRCP, KUB, and ultrasounds to confirm the improvement she was witnessing.
She treats us with respect and greets us with a genuine warmth and kindness. She is now focussing on LDN, and I know she will educate herself on the clinical trials and huge success rates being achieved through Dr Jill Smith's trials. Now that her focus is on LDN, I know she will make an educated decision for the sake of her patients.
And my now teenage son is a walking LDN and IV glutathione poster child.
We have seen them all - dermatologists, gastroenterologists , hepatologists - none of them ever helped my son as LDN and IV glutathione have! The dermatologists need to know about this! The gastroenterologists , the hepatologists, and the allergy doctors - all of them need to know now! If any doctor from any country is interested in my son's healing journey, with a view to helping their other patients, they need only ask and I will provide copies of all my son's test results.
One more thing… during all of this my son suffered, from his very earliest year through the following 12+ years, where his consistently elevated liver enzymes fluctuated in the range 400 to 800. But my son never complained about his lot in life, because it was all he had ever known… repeated periods of illness and exacerbation, repeated tests, carousels of different drugs and their side effects, and multiple medical tests and procedures; many of which were invasive and painful. Yet he went in for biopsies smiling... never flinched when an IV was started... and has even started his own glutathione IV's one-handed.
LDN is becoming better known. There are physicians and gastroenterologists involved in MS and Crohn's clinical trials, lab researchers and scientists, and now; my son's new personal gastroenterologist who's also aware, as are his New York hepatologist, pediatrician, and `intelligent medicine' doctor. All now know of LDN and have seen it works. The work of all those involved in scientific research and trials and the publication of their scientific research and trial data has contributed to the expanding scientific knowledge-base for LDN.
Patients who've benefited from LDN understand how important it is to diligently record their experiences, submit their testimonies, and grow the volume of testimonial evidence. They've responded to the urgent need to raise awareness through their testimonies, and their hope of decreasing unnecessary suffering around the world is united.
This is our contribution to that worthy worldwide effort, and to helping others discover the benefits of IV Glutathione and LDN, as we have.