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Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 7/7/2009 5:54 AM (GMT -6)   
Hi!  +Lyme, I saw your post on another forum re: LDN.  I am wondering if you got on it and how you are doing.  I am going to start it in a few days.  I couldn't find LDN posting on the lyme forum, although I believe I have seen it before.  Are there links or updates that any fellow lymies have regarding this drug?
Thanks!
Tracy

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/7/2009 6:25 AM (GMT -6)   

Hi Tracy  I have been taking LDN and feel it is helping me.  Like other protocols, it seems to help some people and not others.  It can interfere with sleep when you first start taking it, but it should go away after a couple of weeks.  What dose will you be starting on?

Have you checked out http://www.lowdosenaltrexone.org   I found the best price for this (even inlcuding shipping) at Gideon's Pharmacy in New York, NY.  Their contact information is on this site.

I hope it helps you!


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/8/2009 8:38 PM (GMT -6)   
I have heard good reports when I ask around bout it. My LLMD did not know anything about it, so left him w/ a bunch of info

Suspect TBI in 1972 (date corrected by Mother!) Attacked tonsils, pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day


Jendays247
Veteran Member


Date Joined Jul 2006
Total Posts : 652
   Posted 7/8/2009 10:28 PM (GMT -6)   
I've been on LDN for three years (god has it really been that long?) and I don't know if it's doing a whole lot, but like I always say...I'd rather not find out what I'm like without it.

I have had no side effects from it and worked up to 4.5mg rather quickly (I first got it myself and made it into liquid with distilled water and began at 1mg going up from there...now I get it prescribed from my LLMD)

Good luck!
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 7/13/2009 6:07 PM (GMT -6)   

Hi guys, How are you?

Thanks for the responses!  I had my computer cleaned of a virus, and now just realized that my healingwell notices have been going into my spam box.  I was disappointed thinking I hadn't gotten any responses.

Thanks for the link Gracie'smom :-) I will take a look in a moment. 

I started with 2mg (today actually was my first day).  Jendays, did you also notice a sleep issue initially?

Hey, how did it affect your sleep, Ticker?  Were you hyper? Thanks for the info on the nyc pharmacy.  I think I'm up here in the boonies now (near sussex nj).

I was a bit angry when I picked it up-- isn't the purpose of compounding to get non-toxic medication?  Why are my capsuls blue and yellow??  I went to a new local pharmacy, I guess I should feel lucky that I found a compounding place out here.  The pharmacists had never heard of this drug being used in small doses. 

GM, I will look up Scorpio and give her info (she may have gotten it already). I did remember that you guys were considering this drug.

Does anyone here know how to get this site off my spam blocker radar?  I have forgotten... will go into internet options and play around.
 
Thanks again guys hope you are well.

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/13/2009 6:16 PM (GMT -6)   
Tallison, I already received info on the NY support group. Thanks.

BTW, I took LDN for over a year and it did absolutely nothing for me. That's not to say that it will not work for you though. I use to order it from a compounding pharmacy in Manhattan that had it automatically shipped directly to my home each month which was very convenient. I just can't remember the name of the place. I think it was located in the East 30's near Park Avenue.

GM, Thanks again for thinking of me. Kadinsky sent me a lot of info so that you both.

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 7/13/2009 7:55 PM (GMT -6)   
Hi, good.  Not sure if she told you that there are two meetings (at least that I know about) in manhattan, one facilitated by Dr. Younger and often a guest speaker, and then a (more traditional) support group.  There is an e-mail list for it.  Ok good luck, look forward to meeting you sometime in the near future. Take care, TAllison

Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 7/13/2009 7:56 PM (GMT -6)   
Oh, and thanks for sharing your experience with LDN!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/13/2009 8:42 PM (GMT -6)   
Is this (LDN) something that can or should be taken w/ abx? It just seems that it shouldn't -- it just seems that you wouldn't want to take abx if you're taking a med that's boosting your immune system.  What do you all know?
 
Any info is appreciated. I'm going to beg my Dr to try it.

Suspect TBI in 1972.  Attacked tonsils (recurring high fevers, constant low grade fevers, chronic tonsillitis) , pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/14/2009 5:35 AM (GMT -6)   

+Lyme, yes you can take LDN with antibiotics. 

Have you gone to the LDN page at  http://www.lowdosenaltrexone.org  

 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/14/2009 6:34 PM (GMT -6)   
Thank you, Ticker!

Suspect TBI in 1972.  Attacked tonsils (recurring high fevers, constant low grade fevers, chronic tonsillitis) , pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day

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