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03-01-2013, 12:18 AM   #1
egarofala
 
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Success With LDN

I was diagnosed with Crohn's in 2005.

Put on Asacol. Seemed to help somewhat with symptoms. My gastroenterologist is pretty thorough, and regularly monitored my blood while on Asacol. Turned out that Asacol was affecting my renal function and shutting down my kidneys. This was confirmed with a nephrologist, and the Asacol was immediately stopped. Doctor tried Entocort with limited success. Biologics like Humira and Remicade were considered but ruled out due to the fact that I also was diagnosed with Cutaneos T- Cell Lymphoma (CTCL) in 2005. Luckily, the CTCL was in an early stage, and aggressive UVA Radiation treatments (initially 3 times per week, now once every 3 months) have kept the CTCL in remission. However, because of the CTCL, the doctors would not even try Humira or Remicade due to the fact that these drugs could cause or increase the risk of cancer.

Prednisone was the next choice to help control the chronic inflamation in my small intestine, but that is not a drug that can be taken on a long-term basis due to the serious side effects it has. My gastroenterologist sought consultation with 2 other doctors on my case, and the agreement was that I was a candidate for colon surgery to remove the area affected by Crohn's Disease in my small intestine. Thus, I had surgery in June of 2008. Seemed to help initially, but by March of 2011, the Crohn's was back and active in my entire small intestine. This time surgery was not an option, so the only recourse was to keep me on high doses of Prednisone. The side effects were terrible and caused weakness & weight gain to the point that my ability to do normal daily functions was severely affected.

Left with little choice but to continue with Prednisone, I started to search the Internet for other ways to control the Crohn's. Came across a number of threads that led me to research that Dr. Jill Smith of Penn State University was doing on LDN for treatment of Crohn's. Collected documentation on the successful uses of LDN for Crohn's and presented to my doctors. Not one of the doctors would consider prescribing LDN since it was an "off label" treatment that they were not familiar with. I was bold enough to contact Dr. Jill Smith directly, and explained my case to her. She offered to consult with my doctors about LDN, but none took the opportunity to contact her. However, my gastroenterologist wrote up my case, and the insurance company agreed to pick up the expense for me to go to Penn State University Medical Center to see Dr. Smith. Due to my decreasing physical condition, Dr. Smith cleared a spot on her calendar and saw me in June of 2011. Spending about 2 hours with me and reviewing all the test results I brought with me, Dr. Smith felt that I was a good candidate for LDN. She gave me the prescription which I filled that same day using the pharmacy in Lancaster, PA that Dr. Smith used to supply the LDN for her clinical trials.

Within a few short weeks on LDN, my physical condition improved, and my Crohn's symptoms were reduced. I was feeling much better than I had in a long time. Just prior to Thanksgiving in 2011, I suffered a gallbladder attack, which landed me in the hospital for 5 days. After tests confirmed a diseased gallbladder, the decision was made to remove my gallbladder. Due to my previous colon surgery and resulting scar tissue, the surgeon needed to modify her approach to removing my gallbladder. After the surgery, the surgeon came to see me and told me that while removing my gallbladder, she took some time to examine my colon since she was aware of my Crohn's disease. She reported to me that she could find no evidence of active Crohn's disease. Furthermore, CT and MRI tests that were taken in the hospital just prior to my surgery, indicated "no evidence of inflammatory bowl disease". This confirmed to me that the LDN had made a difference with my Crohn's.

I continue to take 4.5mg of LDN every night, and feel the best I have felt in many many years. I have slimmed down to a normal weight, have my energy back, and have normal bodily functions with no Crohn's symptoms. Without Crohn's, I am able to eat normally and finally actually absorb the nutrients from my food that the Crohn's was previously preventing. My system seems to be in good balance, and I feel great! My gastroenterologist (who initially refused to prescribe LDN) has seen the difference that the LDN has made, and recently wrote me a renewal prescription for LDN.

I know this has been a long story, but I just wanted to give hope to others suffering from Crohn's. You need to be your own best friend and seek alternative treatments when traditional methods for some reason fail to help. LDN has changed my life, and I believe it has the ability to make a difference with others suffering with Crohn's. Don't give up!

Ernie
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Ernie
Dx 2005
Meds tried: Asacol, Entocort, Prednisone
Surgeries: Colon Resection 2008
Current Med: LDN (Since June 2011)
Status: Crohn's In Complete Remission, Tests Confirm No Evidence of Active Crohn's
03-01-2013, 04:52 AM   #2
Kev
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Hey Ernie... 2 things. Congratulations, and welcome to the wonderful life LDN can give. 2nd thing.. kudos. Great job on not giving up, on pursuing this course of treatment, and not taking no for an answer. And, here is the best part... now that your 'reluctant' GI has witnessed your remarkable progress.. and renewed your prescription... maybe the next patient who inquires about LDN won't have to go through such extra-ordinary hurdles, AND may end up owing their success to your efforts. That is a feeling that no one will ever be able to take away. I tip my hat. Oh, I'm not wearing one. Anyone seen my hat???
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
03-01-2013, 11:49 AM   #3
egarofala
 
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Hi Kev,

Thanks for the kind words and support.

Since experiencing how well LDN has worked for me, I have set out on a mission to try to help others realize the value of LDN. I speak to everyone I can that I come to find suffers from Crohn's or other Auto-immune diseases. Sadly, most are very skeptical, and few, if any, have even tried seriously to obtain it. The common response is that they have mentioned it to their doctor, and, not surprisingly, have been told by their doctors that little is known about LDN, and that they would not write them a prescription for it. As such, they continue with the course of treatment they are on, and in many cases continue to suffer. It's amazing to me how many young people are suffering from Crohn's. You would figure that they would be open to something that may help them, but my experience is that the younger ones are the hardest to convince. Still, I keep trying in the belief that I have been blessed to have been helped by LDN, and it's now my obligation to try to help others. I have even met with parents of young adult sufferers who feel that LDN is worth a try. However, they too have a difficult time convincing their child to try it.

The Internet is very powerful, and if someone does research on LDN, they can find many success stories. Likewise, there is a great deal that has been written by those that think that success with LDN is anecdotal, and that it's worth and safety has not been proven by extensive clinical trials. Thus, many who would be helped by LDN are swayed from trying it.

As far as my GI and other doctors are concerned, they are happy for my success with LDN, but still are not willing to go out on a limb to prescribe it for others that are left with little alternatives. My GI is a great guy, and realizing my situation and the fact that he did not feel qualified or comfortable prescribing LDN for me, supported me in my request to see Dr. Jill Smith at Penn State. He documented my case and requested the insurance company to approve my visit to Dr. Smith. After I started LDN he kept Dr. Smith in the loop and sent her ongoing test results and office notes. As I mentioned, he sees how well I've done on LDN, and recently wrote a renewal for my prescription. This was a very big step for him. I said to him that now that he has witnessed how well LDN has helped me, maybe he would consider trying it with others in my situation. His response was that he would wait until the drug reps come in and present it to him before he would consider writing a prescription for someone else. He explained to me that he is a mainstream doctor who treats patients with mainstream protocols.

Kev, this is the path that most physicians take. It's safe and leaves them "protected" against criticism by their peers, superiors and others in the industry. Risk management is a big force in the medical community, and going outside of recognized protocols is frown upon.

This past decade has been rough for me, having to deal with Crohn's, Lymphoma, and Spinal disease among other ailments. I was pretty healthy until I turned 50 and never saw the inside of a hospital up until that point (except for tonsils when I was 3). After being diagnosed with Crohn's in 2005, it seemed that everything started to break down. I had hospital stays and major surgery in each of the 4 consecutive years between 2008 and 2011. In 2011, I started LDN, and my health has improved dramatically. I'm not saying that LDN would have prevented some of ailments I've had (especially the spinal disease that resulted in the removal of my 5th vertebrae), but having experienced a period of poor health, I can now appreciate how much of a blessing it is to feel good. I'm now 62 and feel the best I have felt in 15 years. Also, having had extensive exposure to the medical community, I feel I am qualified to comment on all the great things that can be done for people that are sick, while at the same time recognize some of the faults that have left people needlessly suffering.

My experiences have taught me to do my research when faced with a medical problem. Most good doctors appreciate when their patients are educated on the medical conditions they have and the treatments they will receive. When standard protocols fail, you need to seek alternative treatments that may give you a chance to beat the condition you are faced with. Respect the medical community for all the good they are capable of doing, but also realize that sometimes they fail to find the right treatment for everyone. Be your own best friend, and never give up trying to find solutions when all else fails.

Stay well,
Ernie
03-01-2013, 05:32 PM   #4
ctrl z
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Hey, Ernie!

That's awesome LDN has been so useful for you. Please keep us updated with how you are doing!
03-01-2013, 07:50 PM   #5
Kev
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Ernie... You've described the situation very well. I think, however, that your own story is a testament to being one's own 'advocate'. It would be nice if doctors put the health of their patients first and foremost, but professional CYA seems to take top priority. As for patients who could benefit from LDN, it is a personal choice. And I understand the fear of the 'unknown', but... there have been studies (trials), this is a legally available drug, and although success stories like yours n mine are anecdotal... the fact is that in both cases we were prescribed the drug by licensed medical doctors, it did work, and we are living proof of that. You know, one of the head banging moments that always hits me is when this is tossed out.. "the number of patients trialed has been so small". Well, yeah... because so few have been prescribed the drug because doctors refuse to prescribe it. If it was prescribed more, and more and more people responded to it, then the upsurge of anecdotal evidence would perhaps influence doctors to change their mindset. Watch these same doctors do an abrupt about face when the drug is an FDA approved choice, and the marketing people start to work the persuasive powers on them
03-01-2013, 10:20 PM   #6
mclavin
 
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That's just it - there will be no money spent on marketing. There will be no drug rep visiting GI docs because LDN is so inexpensive, hence, presumably very low on the manufacturer's list of priorities.
03-02-2013, 03:27 PM   #7
Kev
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I'm not sure that will be the case when the Phase III trials are complete and LDN moves to the mainstream. The people behind it will need to recoup the $150 million they invested. And, from what I've been led to believe... once mainstream, the patents will mean that all LDN will come from patent holders. There will be no more compounding (if those behind it choose to enforce their patents... and how else will they be able to profit from it?). So I'm expecting to see a big price increase... but it will be for a DIN, registered and approved drug... so folks will be able to put it through their insurance. That is pure ... speculation.. on my part. But, if it isn't the case, why buy the patents?
03-02-2013, 04:05 PM   #8
mclavin
 
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Yes, as it turns out I came across an article yesterday on the biotech co. that bought the patent. What you said makes a lot of sense. Lets see what happens
03-03-2013, 04:04 PM   #9
Jmrogers4
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Yes, that is my feeling as well Kev. I guess there would also be a standardization of it as well so you wouldn't have to worry about pharmacy compounding correctly
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-03-2013, 04:05 PM   #10
Jmrogers4
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Thanks for sharing your story Ernie.
03-04-2013, 06:48 PM   #11
Kev
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Yeah, not to hijack Ernies good news thread... the other benefit would be extended shelf life. A factory sealed, mass produced pill, would have a much longer shelf life.
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