Long LDN success story 14 years out of my 15 year olds life

[Guest guest]

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/metronidazole, 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 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 Cholangiopancreatography) 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

's Hopkins for his endoscopy, colonoscopy and liver biopsy. Their reputation

is known worldwide and it's why I went there. (The s 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.

The s 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

(because supplemental iron can be damaging to the liver), and his low blood

count came up just fine.

But having learned of LDN, I now wanted to see if adding LDN could spur further

improvement, so whilst still at s Hopkins, I phoned for a consultation with

a knowledgeable LDN doctor, Dr 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 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!

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.

Back home from New York, 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).'

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.

On 3 March 2010, twelve months after starting on LDN, my son's blood pathology

report stated his hemoglobin had returned to `normal', and 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.'

When the gastroenterologist gave me the beautiful color photos of his 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 ,

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 '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.

[Guest guest]

Oh wow, what a wonderful story and what a wonderful mother you are, you have done so much good, I am sooooo happy for you and your son....

Celia