Jump to content



Existing forum users need to log into the forums and website with their email address and password. Become a premium member to access enhanced forum features and visit our online store to view our products.

New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBook?  Our helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 

 


Photo
- - - - -

low dose naltrexone


  • Please log in to reply
6 replies to this topic

#1 aidansmom

aidansmom

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • Gender:Female

Posted 24 March 2012 - 09:40 AM

Just wonder if anyone has used Low dose naltrexone?
Did it help?
What dose?


#2 mama2alex

mama2alex

    Advanced Member

  • Members
  • PipPipPip
  • 1,150 posts
  • Location:Northern California

Posted 24 March 2012 - 10:26 AM

This is timely! Our LLMD is having us start my ds 70lbs on 1mg LDN per night. I read the following last night in my book, "The Lyme Disease Solution" by Kenneth Singleton:

"...I have found low dose naltrexone to be beneficial for a number of my patients with Lyme disease. The reason for this is that LDN appears to restore the ability of the immune system to regulate itself. When the immune system regulates itself properly, there is a significant reducation in chronic inflammation of the "autoimmune" type. Taken at bedtime, LDN blocks the body's endorphin receptors for a brief amount of time (one or two hours), signaling to the body that it is time to make endorphins...Finally, I have found that LDN works best when the following three conditions have been addressed prior to its use: 1) vitamin D deficiency has been corrected, 2) food sensitivities have been corrected by [diet], and 3) adrenal stress or adrenal fatigue has been properly corrected."

I would love to hear anyone's experience with LDN. We will start him on it Monday night. I am hopeful that it will help.

#3 mdmom

mdmom

    Advanced Member

  • Members
  • PipPipPip
  • 503 posts

Posted 24 March 2012 - 12:45 PM

My DS14 and DD12, both Lyme and co-infections, have been taking LDN since June 2011, shortly after they began treatment.

It is hard to say if it is "working," as you just can't always tell very easily if the immune system is functioning better. But our insurance covers some of the cost (we have a $20 copay per child) and I figured it can only help, not hurt.

They both started taking LDN in liquid form and had to work up to the full dose of 4.5 mg. It comes from a compounding pharmacy and they take it in capsule form now.

As a side note, I have not noticed any bad side effects.

DS16 dx with PANDAS/Lyme & Co. at age 13 symptomatic since age 2; originally dx with Asperger's, OCD, Anxiety, PTSD
DD14 dx with Lyme, Babesia, Bartonella at age 11, symptomatic from birth

Mom & Dad with various symptoms for 20 years; both M & D being treated for Lyme & Co.

Also addressing MTHFR, diet (GF/CF/GMO-free or Organic),


#4 mommakath

mommakath

    Advanced Member

  • Members
  • PipPipPip
  • 98 posts
  • Gender:Female
  • Location:Georgia

Posted 25 March 2012 - 06:06 PM

Our functional medicine doc has us looking into it and gave me the website address lowdosenaltrexone.org to read up on it. We would be using it to build up NK cells. She says there are four ways to approach it, she has used all four, and sometimes in combo. One of the other ways is by using Acyclovare (anti-viral) and it also has the added benefit of taking the edge off of the kids. Good choice if trying to wean off of SSRI's.
Katherine

#5 aidansmom

aidansmom

    Advanced Member

  • Members
  • PipPipPip
  • 169 posts
  • Gender:Female

Posted 26 March 2012 - 10:20 AM

Thanks for the replies so far. I may also post this on the PANDAS board also.

Our neurologist is the one who suggested that we try the LDN and our LLMD doctor is OK with it but doesn't seem to pushing for it. It seems like the LLMD is pushing for the use of GABA more which we have started - GABA seems to be possibly helping with his sleep when given at bedtime but not with things during the day. We are having a lot of problems lately - mostly behavioral but it seems like he may be in pain and have other things going on also but the behavioral problems are the most detrimental from my point of view. Possible from the use of a new antibotic that started about a month or so ago.

I actually have some on hand prescribed by the neurologist but have been researching its use before starting. Most of what I am readind suggests that you start with 1 mg and work up to a max of 4.5 mg. Our Dr. prescribed 4 mg - thinking for asking to start at a lower dose.

The only neg side effects I read about is sleep issues and vivid dreams but this usually goes away after a week.

Any more input would be greatly welcomed.

#6 mama2alex

mama2alex

    Advanced Member

  • Members
  • PipPipPip
  • 1,150 posts
  • Location:Northern California

Posted 26 March 2012 - 11:51 AM

I'm curious why your neurologist suggested it - to possibly help with the pain? Also, how much does your son weigh? Our LLMD didn't talk about working up the dose, but I'm supposed to call in two weeks and report, so maybe they will do it then.

#7 mdmom

mdmom

    Advanced Member

  • Members
  • PipPipPip
  • 503 posts

Posted 27 March 2012 - 08:40 AM

I believe it is very important to start at a low dose and work up to the full 4.5 mg.

What I left out of my initial post on this was that my husband and I started LDN (liquid form) a couple of weeks ago. We are working our way into a full dose adding .5 mg every three days.

My children did not report sleep issues or weird/vivid dreams.

Since starting the LDN, my husband and I have been sleeping better than we have in a long time.

Hope this helps.

DS16 dx with PANDAS/Lyme & Co. at age 13 symptomatic since age 2; originally dx with Asperger's, OCD, Anxiety, PTSD
DD14 dx with Lyme, Babesia, Bartonella at age 11, symptomatic from birth

Mom & Dad with various symptoms for 20 years; both M & D being treated for Lyme & Co.

Also addressing MTHFR, diet (GF/CF/GMO-free or Organic),





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users