tried Low Dose Naltrexone (LDN) for first time -- good so far!

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theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 1/25/2009 2:42 PM (GMT -6)   
Hello all,

I wanted to give an update on my LDN experience so far. Today's my first day, and this may be premature or just hopeful, but I feel pretty darn good. I was able to clean out a closet, walk the dog, play with our daughter, and just plain function.

I was hoping to knock out fatigue (yeah right), and usually by this time of day (just after lunch), my body is achy and yearning for a nap. Don't get me wrong, a nap still sounds good, but I'm not dying for a nap which happens EVERY DAY. I want to be gentle to my body and lay down soon, but it feels more like a choice right now.

One of the side effects are sleeping problems which I was pretty fearful of. I ended up taking the pill at 2 a.m. and then went right back to sleep. Around 4 a.m. I started having some crazy dreams and wasn't sure if I was sleeping or not, but I woke up at 7 a.m. and felt as if I got a good nights sleep.

So...this is my first day on LDN. I'm optimistic which helps a lot. I'll keep you updated on any progress!!
Envision health and your body will follow!
Diagnosed with RR MS 11/2001
Healing more and more every day
Andrea :)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/25/2009 3:05 PM (GMT -6)   
Wow...i really hope this is a sign of things to come! Please continue to let us know how things go!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


kytkat
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 1/27/2009 3:48 AM (GMT -6)   

I am new to this site, but would like to learn more about MS.  My mom was diagnosed 6 yrs ago, after working 30 years as a nurse she finally decided to have an MRI after admitting to us that she believed she had MS.  Since then, she has become depressed and in many ways appears to have given up. I am extremely worried about all aspects of her health and treatment.  She has severe kidney problems as well.  Due to kidney stones and sepsis she nearly died last year.  I would like to talk to someone about how as a family we can encourage her to not give up on having quality life.  Her symptoms have progressed tremendiously since the diagnosis.  She is very obviously depressed, and refuses to seek treatment beyond pain meds and ritilian for fatigue. I know there must be more meds out there to treat the disease itself, right?? Any insight, advice, or shared experiences would be greatly appreaciated...I pray that my daughter will grow up to love and respect me as much as I love my mom today.  My heart is compassionate and if she doesn't have to give up and stay in her recliner for the rest of her days, then i want to do all i can to help her realize that her life isn't over NOW...please share your stories, your treatment, help me relay the hope that my mom so despartely needs.

KK


Degenerative Disc Disease, Spinal Fusion L4-S1, Spinal Stenosis, Numerous Bone Spurs..Recent MRI am still trying to decipher awaiting Dr. appts..


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/27/2009 12:43 PM (GMT -6)   
KK,
I really feel for you and your Mom. The biggest thing she can do for this awful disease is do nothing and give up! Almost all of us here are on some kind of treatment and we will not give up! We try to work together and help each other out and the best support someone can find is right here on this sight! The Moderators are so good to all of us and I really do love them as they are great! Please encourage your mom to seek treatment for her MS. She may still be at a stage where a treatment might help her. One of the Treaments that we cover here is Tysabri which is an IV type treatment. If you have any questions about it, please go to Lauren's blog which is: http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/
Lauren will answer you asnd try to help out with any questions you may have about Tysabri. She's really great. Good luck to you and God Bless you. You sound like the daughter that I would love to have.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/27/2009 12:44 PM (GMT -6)   
Andrea,
You go girl! You rock and together we will beat this awful disease!!
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 1/28/2009 1:19 PM (GMT -6)   
Hello all,

So after two days on LDN, I stared to feel beat up (wimp, I know) from the disturbed sleep side effects. I took a break yesterday and got myself well rested. My neurologist suggested to take the pill in the morning, so that's what I'm doing today. Not sure if it's going to help or even work now. I'll update you tomorrow though!

Staying positive ~
Stay at home Mom
wheat / dairy free & organic since 2007 -- amazing difference!
Diagnosed with RR MS 11/2001
Copaxone and starting LDN
Healing more and more every day
Andrea :)


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/28/2009 1:32 PM (GMT -6)   
Andrea,
That's the way, stay as positive as you can. That will be one of the things we will need to beat this awful disease!
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/19/2009 4:40 PM (GMT -6)   

Hello everyone,

You can read a little bit about me below.  I start LDN soon, and the FDA won't approve it for Crohn's for a very long time, because no private interests are backing the research.  I'm not being pessimistic, that's just how things operate these days.  There's a larger study going on at Penn St, but you won't be reimbursed for the travel. 

I'm excited about the good stories I hear.  Remicade has lost efectiveness for me, so it's back to a lot of blood in the stool and a little bit of dizziness when doing anything more strenuous than breathing.  Like right now, I see two keyboards I'm typing on.  Interestingly, I've mainitained my weight, but that won't last. 

In a strange way, I think the econmy will help Crohn's patients in the long run.  As deductibles climb and pocketbooks shrink, many docs are going to be forced to work with smaller budgets (from there patients).  There's going to be a lot of researching alternatives, and not just taking the advice of the Pharmacuetical Rep.  I will DEFINITELY keep everyone posted on my LDN and Chlorella (with a possible five day Master's cleanse, the lemon maple syrup cayenne pepper thing, all with my docs supervision-they say minimum ten days, but I travel for work).  God Bless everyone, this economy doesn't scare Him a bit. 


I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 2/19/2009 4:43 PM (GMT -6)   
I apologize for above post, I thought this was a Crhon's forum.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/19/2009 8:38 PM (GMT -6)   
No worries ExJohnson,

You are always welcome here to share your LDN stories. I have heard great things about LDN and crohn's. I wish you the very best of luck.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


LymeFrustration
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 3/11/2009 7:57 PM (GMT -6)   
I have a question about LDN (low dose Naltrexone, right?).  I gave my pharmacist a prescription to fill last Friday, and he is still working on it.  He operates a compounding pharmacy, and I believe he is having trouble getting all of the ingredients at a good price.  Is this very expensive????  Is it usually covered by insurance for use with MS?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 3/11/2009 9:50 PM (GMT -6)   
It is never covered by insurance.  LDN is pretty much off label for everything.  It is supposed to be very inexpensive.  Good luck and I hope you find real relief.  Most people pay about 40 dollars for a month's worth. 

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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