Long LDN success story 14 years out of my 15 year olds life
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 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 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
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.
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
(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 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!
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!
Sooo . . . 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 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.