Monday, May 25, 2009

LDN beginnings

I will be one of the guests today on Mary Boyle Bradley's blogtalkradio show discussing the Drug LDN (LowDoseNaltrexone) that has helped my daughter and best friend lead a normal life.

Mary is the author of "Up the Creek with a Paddle" the book that intrigued me, made me laugh, cry and gave me my hope back that both of these ladies that are so important to me could possibly have the shot at a close to normal life.

I want to say that Mary has done an extraordinary job writing this book. It drained my emotions to write just the little without all the details timeline to help me with the radio show. I experienced a small glimmer of how time consuming and emotionally draining it is to drudge up the memories of past pain as a caretaker let alone the victim of any of these dieases.

I decided to share this timeline on a newly formed blog I learned to make last night LOL. There is a first time for everything folks and novice as I am I am willing to share with you and also all of my flawed grammar and punctuation :).

It was tough to decide how to approach this and where to start becasue the story began long before 2001 but we just did not realize this until after the facts presented themselves in the form of an onslaught of symptons with no relief for years for my daughter.

So I chose to begin with Spring 2001 because this is the point in her life that her symptons worsened and became unmanageable to lead a normal teenage life.

I hope that this brief timeline review could possibly help someone out there in any way.

Spring 2001 : severe pains in lower right quandrant. Tested for: Helicobacter Pylori -results negative. Suspicion IBS

2001 Summer
Blood work: IGA IGG levels indicative of Celiac sprue
2001 Fall : Columbia Presby seen Celiac Dr. confirmed Celiac by bloodwork. My daughter did not want to have a colonoscopy. Started eating Celiac way. Fell off the wagon eating the celiac way. Struggled for the next almost 2 years eating and going to school.

2003: graduated HS and heading to University. Became sicker in the summer. Took the semester off.

Jan 2004: Started College online. Struggled the entire year to feel better. Began eating celiac way again in fall. Was desperate to feel better.

2004 Dec: 5’ 7” and 83 lbs from eating the Celiac way. Almost died.
Dec 28th 2004 : Emergency room scan revealed Crohns,
Dec 29th: Colonoscopy done with pediatric instruments and then confirmed Crohns with multiple fistulas present in the ilieum.
IV for days… heavy steroids and a reaction in the middle of the night. Thought I was losing her. Prayed over her all night. We got thru the night and she was able to start eating jello the next day. We took her home on Jan 2, 2005 on my Birthday. It was the best Birthday present to have my little girl alive.

A year of tons of meds and not a lot of progress to remedy all the symptons.

Medicine diary written by my Daughter

In/after the hospital in '05
-flagyl * idk about the dose for either of these antibiotics. I think one was like 375mg. that number is stuck in my head & I was on them for about a year & 1/2
-prednisone * I think something ridiculous like 300mg for a short time, then 100mg for a long time, eventually stepping down, but often having hiccups.

Eventually got off the steroids, then was stepped down off the cipro & eventually the flagyl...very slowly & I remember being off the flagyl something like 2week, then having to go back on the lowest dose bc my body wasn't having it. -- during the stepping down of the drugs they were trying once maintenance drug after the next to help me get off & to then keep my body in check.

I don’t remember all of them, there were definitely several. There was..
-aciphex, which I don’t believe lasted that long
-6 MP, the standard maintenance drug for crohns, which sent me into the ER with pancreatitis (I fell in the "grey" area of the Genetic pre-test)
-pentasa, which rendered me a walking zombie. Dropping my blood pressure and causing me to be extremely dehydrated to the point that I was all veiny, weak and had frequent panic attacks. I practically lived on xanex when taking this drug.

Then came my miracle drug, remicade. Started January of '06 and continued (on the same dose) until October of '08 when its effects began to dwindle . This enabled me to come off all other drugs, including my Zoloft with the exception of 25mg every OTHER day--because, for some reason, that little bit keeps my stomach/panic attack in check.


Started Remicade Jan 2006

I began researching an alternative to remicade after my daughter was on for about a year which was the beginning of 2007. Our aunt was also on this drug but she had a form of arthritis I think. She cautioned and advised strongly that my daughter take milk thistle along with this drug to reduce any liver problems. Our aunt started to have problems with the drug after marking her 2nd full year hence me realizing the honeymoon would be over for us in about a year bringing us to and stretching it to the middle or end of 2007 based on my calculations of genetic disposition for allergies .

The summer of 2006 august the family went to Myrtle beach . Prior to leaving for Myrtle beach we had my daughter tested for antibodies of remicade. She was having severe itching all over her body and eating ice constantly. I felt like her body was beginning to reject the remicade but she was vehemently in disagreement with me. I insisted she get tested to see if she was in rejection. It is done with a blood test to see if there are antibodies present. She was miserable and wanted to fly home. We did not want her to be alone in this condition. We decided to leave a little early and since we drove we had this luxury. As we were preparing to leave my daughter while showering called my name. When I went into the bathroom she said she was going to pass out, then she did in my arms and I did not feel any vital signs. I screamed for my husband who tried to revive her. Not responding he threw her over his shoulder and for some reason she came back. The ambulance arrived and her BP was very low as well as her heart rate. She was brought to the hospital and was stabilized for the trip home. We were going to fly her home but she was afraid and wanted to stay with the family.
When we arrived home we brought her to the gastro who proceeded to tell us it had nothing to do with the remicade. She refused to get off the remicade because he explained that if we were wrong about her body rejecting it there was a strong chance she would not be able to receive remicade again or if she tried to resume after a lapse of time not taking the remicade her body most definitely would form antibodies.

We changed gastro DRS. Our new gastro watched her closely. She was having narrowing of her stools. He was very concerned. He performed a procedure on her and deducted that she needed a major surgery which might have resulted in removing part of the small intestine closest to the ileum which could have resulted in needing to wear a bag on the outside of her body maybe permanently. Our Dr was quite shaken up. He researched who was capable of doing the best surgery for this scenario. He found only 2 Drs that he felt very capable of possibly preventing her from this grim scenario. We went to Cornell and to our surprise the Dr. was very optimistic and decided to just to exploratory and maybe a repair as he saw fit or…. do nothing after he was in the the operating room based on what he finds and reschedule her for the BIG lifechanging surgery.

Jan 4th 2007

We braced ourselves and had so many people all over the world praying for her.
When the Dr. came out of surgery he told us that when he went in he simply had to remove scar tissue that was very close to the ilieum and she was very lucky. That was all that needed to happen because she was all healed up inside from the remicade. She needed to go to Cornell as needed for a very simple procedure he could perform in his office if he deemed necessary if she started having the same symptons was his recommendation. My husband and I were calmly suffocating screams of joy that she did not have to be cut up and wear a bag on the outside of her body for who knows how long if not indefinitely.
After that I promised myself that I would find an alternative to these drugs because I was afraid what would happen when and if they began to fail her.
I was driven and spent hundreds of man hours researching. I joined every group in addition to all the other groups I previously joined. Spoke to so many patients with auto immune disease. Typed in so many queries into the browser that I literally fell asleep with my head on the keyboard so many nights. I could not rest until I found something to “go to” for my little girl.
It was Oct 2007 and I was in some support group site when I stumbled on something called LDN. I read and became intrigued by what the patient was talking about.
I typed in “LDN” . I came up with and of course I drank in the whole site which led me to dig some more and find the book “Up the Creek with a Paddle” By Mary Boyle Bradley.
I was so excited I needed the book at that moment.!! I got on the phone and tried to track a copy down within the hour. Unfortunalely, I had to order online with expedited delivery. I ordered 2 copies, one for me and one for my best friend who has MS and was struggling with a very bad October. I was hoping that she would come out of October symptom free and wanted her to read the book with me and possibly consider this treatment for herself and I wanted my daughter to read the book and consider it also.
Well I read the book twice underlining and highlighting as I went. My friend was having some symptons which made it difficult to read comfortably so I started spitting out the knowledge I gleaned from the book until she was able to do a full read herself. We spent a lot of time discussing the book and LDN.

Jan 2008

My friend lost her vision again. I told her this would be the time to try the LDN. We went to a medical Dr. in the area to try to persuade him to give us a prescription for LDN. He wanted to give her prednisone . He would not give the prescription although I had sent him all the Info prior to the appointment and had more info with us at the appt. He said would not prescribe this off label and he really pushed the prednisone that we did not accept and walked out.
I looked around for a local DR. to prescribe. I found Dr. Sullivan in Mechanics PA.
We made the phone appt and faxed the paperwork. We had to wait almost 10 days for the appt. I was getting nervous because I felt the window of opportunity closing to regain her vision fully. I had read up to 6 weeks from onset of the sympton you had to possibly reverse the symptom.

My best friend with MS began LDN : beginning of 2008
1st dose
Vivid dreams and I think a little trouble sleeping if I remember her saying that
No change with vision

2nd dose 2 pills
After starting 2nd dose the 12th week of LDN .........VISION RESTORED!!!!!.

3rd dose 3 pills 4.5 mg
Tingling began in hand then worked up the arm then the rest of the right side feeling returned after 8 years absence. This was not even on the table as a hope of any feeling returning. What a beautiful surprise gift!!!
Doing very very well…… It is May 2009 over a year on LDN!!!

Back to my daughter

Summer/Fall 2008

The length of the remicade being effective was now somewhere between 4-6 weeks. She usually went 8 weeks between infusions. The Dr .was talking about either increasing the dosage or giving the infusions closer together.
Remicade infusion June 20 something
Car accident July 8th side swiped truck changing lanes. I started to worry that it had something to do with her health, then dismissed it as me obsessing.
Skin breaking out with tiny bumps, bathroom trips increasing and lasting long in duration, trips to the dermo, gastro etc. Sometimes Dizzy, feeling like blacking out, just feeling lousy. Had to refrain from driving during those symptons.
Oct 7th Remicade infusion
Oct 8th car accident side swiped truck changing lanes.
I was concerned that her peripheral vision was being affected by the remicade. I sent her to a specialist to make sure. All was well with her eyes.
She was due for an infusion at the end of December. A decision had to be made.
I encouraged her to try the LDN at this point right before she was due for the infusion because by my calculations she would be in the middle of the 2nd dosage change of the LDN and probably feeling its benefits before her window of opportunity to do the remicade would close leaving her with an antibody problem. It was the TIME. We made the appt. and she began.

My Daughter’s update written May 25th 2008

Started LDN Dec. 20 '08. I felt like crap for months. LDNt really didn't do anything until I was on the full dose and even that took awhile, probably in part because of my always low iron. LDN works, in the sense that it keep my bowels moving and my weight has remained "stable." But in the beginning I did not have an appetite (as predicted), which I battle to begin with. I hardly ate so that only made me weaker. Eventually I stopped being repulsed by food (I think around the fully dose) but I still rarely get really "hungry" like when I was on remicade.

When I was on the remicade, before the last few months, I could eat almost anything (my allergies & things like corn or overly fried foods aside) without any repercussions. Maybe a short feeling of being "full" at most & only because it enabled me to really EAT, like I hadn't in years. But I never really felt uncomfortable or like I had to run to the bathroom after eating. Also, my stress did not send me running to the toilet.

On LDN, not the case. I go more regularly than on the remicade (which I think is a good thing, some people may see it as a symptom...but I prefer to feel cleaned out). However, I am back to being uncomfortable and/or having a distended stomach after almost EVERY meal... It inhibits my eating because I do not enjoy that feeling. If I could skip meals & not get weak/nauseous I would.

One thing I noticed fairly quickly with LDN was my skin. On remicade (at least I always thought it was remicade but had no way to really know) it didn’t heal like it used to. My face would get irritated easily & bumpy. Nobody else would notice it & you all would say I was crazy when I said my skin was in bad condition but I knew what it was supposed to look like. My skin has been healthier, smoother and just overall calmer since I switched to LDN (or discontinued the Remicade).

I think the true test of the LDN will be what I feel like after my iron is raised by the infusions scheduled. Perhaps that will help, or maybe I will have to find something to take in addition to it... or just (gasp) change my lifestyle entirely. I am hoping I don’t have to do that, being that I am so picky and have so many allergies. I did really enjoy that about the remicade, being able to eat without feeling like I can’t move afterwards. oh well!

Author’s notes

· If my daughter had not taken the Remicade which afforded her the time to heal and get her in a good place internally and emotionally then getting on the LDN in the state she originally was in Dec 2004 would have started her, and kept her, in the particular stage of the disease. Although I was against her taking Remicade, her disease had progressed so far along because it originally was diagnosed as Celiac that she ended up healing while on the Remicade bringing her to an excellent starting place to begin the LDN. All God’s perfect timing.

We will follow up with more updates as the months unfold to be helpful and encouraging to anyone else going thru an autoimmune disease and is ambivalent about making the switch to LDN.

If you know someone struggling with an autoimmune disease let them know about this Drug and where you can find all the information is and join the broadcasts every Tuesday @ 1:00pm EST @

God Bless

Kathy Decosmo