Low Dose Naltrexone, what did it do for you? Do U have Autoimmune antibodies and did LDN?

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astroman
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Date Joined Mar 2014
Total Posts : 5081
   Posted 2/3/2018 3:45 PM (GMT -6)   
This has been on my back-burner for a long time. I've been away from the "weird Drs/LLMD's ect" for two years now. Its nice not having these non-covered $300-400 hr Dr bills.

However, I have recently seen a Osteo Dr (slightly in the "Weird Dr" category) who will/has Rx'd LDN for patients. The kicker is insurance accepts Osteo MD's and a $30 co-pay is my ticket to try LDN, affordably.

I'd like to know what general symptoms LDN improved. If you have any real autoimmune, this would be even better to hear about. LDN is controversial with autoimmune, I cant find straight answers.

Notes: Per my signature, I have not needed to treat lyme for a few years. I'm in repair mode (muscles/tendon repair)and part of this is dealing with autoimmune. In addition to a history of elevated antibodies, I have multiple copies of autoimmune genes so the kindling was already there to happen, and I think lyme was the trigger which set off this out of control train.

My quest may never be finished and I refuse to give up learning about this. Without the internet, myself and many of you would be much worse, so I really appreciate the info here and everywhere on the web.

The web really needs a good autoimmune forum filled with "brainiacs" instead of breaking up into specific diseases like conventional medicine does. To bad most autoimmune people only listen to clueless conventional Drs who in-turn, only cover symptoms with Rx medicine.

Post Edited (astroman) : 2/3/2018 2:20:18 PM (GMT-7)


goshawk
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Date Joined Sep 2016
Total Posts : 2293
   Posted 2/3/2018 7:49 PM (GMT -6)   
bumping for more views

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5081
   Posted 2/3/2018 8:04 PM (GMT -6)   
There quite a few LDN users here a couple years ago. I might have to goggle this place some more and maybe e-mail them.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 230
   Posted 2/3/2018 9:19 PM (GMT -6)   
LDN gave me a flareup of neuropathy that I haven't recovered from after two years. My doc said he hadn't seen it happen before, but if you look around the web you can find others with Lyme reporting adverse effects.

OptimisTick
Regular Member


Date Joined Jan 2016
Total Posts : 103
   Posted 2/3/2018 9:36 PM (GMT -6)   
LDN has been wonderful for me. However, I do not have any autoimmune issues. Sorry I can't help in that respect.
Bit in the 80's with bullseye rash
Diagnosed Nov 2015
IGeneX:
- IgM (IND): **31 +, **39 IND, **41+++
- IgG (Neg): **31 IND, **39 IND, **41+, 58+
- CD57 = 31

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 2/4/2018 7:58 PM (GMT -6)   
Astro - before I was diagnosed and was searching for what was wrong with me I came across the ldn website and decided to give it a try.

It has a bit of info on autoimmune.. been awhile since I’ve read the info on the site tho - you may have already been there - it’s a rudimentary site

www.lowdosenaltrexone.org/ldn_and_ai.htm
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Loutucky
Regular Member


Date Joined Nov 2014
Total Posts : 434
   Posted 2/5/2018 9:08 AM (GMT -6)   
I was diagnosed with MS in 2010 due to white matter brain lesions. I started LDN in January 2017 because my LLMD said it would help modulate my immune system. I worked my way up to 2 mg and stopped after 4 months. I couldn't tell if it was doing anything good or bad so I quit.

An MRI in October of 2017 showed my lesions had advanced and my Integrative doctor said I should start and stay on it. I've been back on LDN for 3 months. Still no help with my lyme, bart and babs symptoms but I will continue to take it to stop lesion progression-I hope.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 2/5/2018 10:41 AM (GMT -6)   
Loutucky said...
I was diagnosed with MS in 2010 due to white matter brain lesions. I started LDN in January 2017 because my LLMD said it would help modulate my immune system. I worked my way up to 2 mg and stopped after 4 months. I couldn't tell if it was doing anything good or bad so I quit.

An MRI in October of 2017 showed my lesions had advanced and my Integrative doctor said I should start and stay on it. I've been back on LDN for 3 months. Still no help with my lyme, bart and babs symptoms but I will continue to take it to stop lesion progression-I hope.


Quick note - 2 mg may not be enough. I think I went up to 4.5 or maybe 6 before I stopped - the usual dose is usually higher than 2 mg from what I’ve seen/heard
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Loutucky
Regular Member


Date Joined Nov 2014
Total Posts : 434
   Posted 2/5/2018 10:46 AM (GMT -6)   
Girlie, you are right. I am just taking my time going up 1/2 mg at a time because it does cause me great sleep disturbances for about 3 weeks each time I increase. I'm hoping that I'll feel better once I make it to the higher dose.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 230
   Posted 2/5/2018 11:15 AM (GMT -6)   
Some doctors say that LDN doesn't have to be taken before bed.

Loutucky
Regular Member


Date Joined Nov 2014
Total Posts : 434
   Posted 2/5/2018 11:47 AM (GMT -6)   
acarined, thanks. That is an option I might try.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5081
   Posted 2/6/2018 10:19 PM (GMT -6)   
Thanks so far everyone
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 237
   Posted 2/6/2018 11:34 PM (GMT -6)   
After starting treatment for lyme, my ANA turned positive, though just slightly. They weren't concerned it was an actual autoimmune disease, but that the lyme had caused it. A few months later, one of my drs put me on LDN. I started at 2.5 and worked up to 4.5 where I am currently. It seemed to help with my muscle weakness, fatigue and sleep issues. Next time I see my dr she is going to decide if it's time to wean off it. I haven't noticed any negative effects from it.

bmoberg337
Regular Member


Date Joined Dec 2014
Total Posts : 88
   Posted 2/7/2018 9:54 AM (GMT -6)   
Astro, I personally had a great experience with LDN. I would actually rank it as one of the top 4 treatment approaches I've tried (behind Dapto, Ceftriaxone, and HBOT).

I stayed on it for about 6 months, during which I experienced about a 10-15% improvement in my fatigue symptoms and overall increase in day to day stamina. I learned that my optimal dose was around 3 mg, anything higher or lower I really didn't see any improvements. When you first start, it may make you feel sick and it's good to start low (.5 or 1mg) and work your way up to a dose that works for you (some people are good with 1.5 mg some are good with 4.5). The initial sickness feeling only lasted (for me) for about a week if that. Most doctors advise taking this before bed, but it worsened my insomnia so I started taking it in the morning and it was still just as effective but didn't interrupt my sleep.

My ANA was positive before taking this and more specialized test revealed positive results for mixed tissue disease (I think this is common in the Lyme community?). Once I stopped taking LDN I didn't back slide, fortunately the results have lasted and I've been off it for about 6 months now. Hope it works for you!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 2/7/2018 2:13 PM (GMT -6)   
Good to know you didn't backslide when you stopped the LDN bmoberg.


I always wonder about these supportive meds we take - can we get off them eventually.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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