LDN AND POST EXERTIONAL MALAISE

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sunny days
New Member


Date Joined Mar 2012
Total Posts : 18
   Posted 1/30/2018 9:50 AM (GMT -6)   
I started taking compounded LDN recently with good results: better mental clarity, decrease in flu like symptoms/inflammation, and an increase in energy. Two days of taking advantage of this and I'm exhausted, slept most of the day yesterday. Seems like PEM. Has anyone experienced this? Anyone taking LDN? What has been your experience? Going back to the couch now......

Thanks,

Neve

aphysicalwreck
Veteran Member


Date Joined Sep 2012
Total Posts : 652
   Posted 1/30/2018 12:22 PM (GMT -6)   
Sunny
My nephew is a pharmacist at a compounding company and he sells this supplement. I asked him about it. He said all his patients have had very good results and he feels the sudden tiredness is probably unrelated.

I don't know much about it yet but could it be a herx?

He suggested I use it but I haven't done all my research yet.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 1/30/2018 12:49 PM (GMT -6)   
Maybe it was too early to 'take advantage of ' it.

You need to slowly build your body back up.
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

sunny days
New Member


Date Joined Mar 2012
Total Posts : 18
   Posted 1/30/2018 2:35 PM (GMT -6)   
THANK YOU BOTH FOR YOUR REPLIES. I'M RECENTLY DIAGNOSED AND DOING MANY NEW TREATMENTS. I THINK YOU ARE RIGHT THAT I HAVE TO SLOWLY BUILD MY BODY BACK UP. IT'S HARD TO PACE WITH TWO KIDS BUT I NEED TO IF I'M GOING TO IMPROVE. SUCKS FOR MY KIDS.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 1/30/2018 2:53 PM (GMT -6)   
..and LDN supposedly affects the immune system - so there may be something in what aphysicalwreck posted.

...I tried the ldn and unfortunately it resulted in me having pain during sleeping hours when there previously wasn’t. So I stopped it after several weeks.
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

TxBart
Regular Member


Date Joined Jun 2017
Total Posts : 85
   Posted 1/30/2018 3:26 PM (GMT -6)   
My LLMD and LLND have both shaken their fingers at me for trying too much too fast. I would get the energy high when I started ozone, so I thought doing a year's worth of neglected yard work in a weekend would be a great idea. I paid for that with a week of being sidelined. I did it again a few weeks after that with the same results. I now do LDN and ozone and am about 95%. I tried the ol' yard work trick again a few weeks ago. Nope. Still not ready for that much exertion. I can walk several miles now, do regular housework and mow the lawn, but anything strenuous or extra weight-bearing is still not in the cards. Slow and steady wins the race.

Aurora2013
Regular Member


Date Joined Jun 2017
Total Posts : 92
   Posted 1/30/2018 7:49 PM (GMT -6)   
I have been taking LDN since mid October and it has been a game changer for me. Initially I had difficulty with falling asleep but that has since past. I can honestly say that I have not had this much energy in years. Despite averaging 5 hours of sleep per night, I am not dragging during the day at work like I used to prior to starting LDN. I have also noticed that I have less joint pain and given that LDN is cheap and has few side effects, it was an easy decision for me to give it a try. It took about six weeks before I noticed significant changes but it was certainly well worth the wait. My overall energy has definitely increased and I am back to lifting weights 5 days a week. I would say give your body a chance to get used to it as in my experience it is well worth it.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2922
   Posted 1/30/2018 8:24 PM (GMT -6)   
good to hear LDN is working for some. girlie and me? didn't do squat. i think it all depends on how the bugs are affecting you. mine seem to be all nerve related to i wouldn't think LDN would do much unless my immune system was overreacting and causing the nerve issues. alas i'm pretty sure its my brain doing all the screwing up with the nerve firings.

always have an open mind to trying different things you never know what'll work for you.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 1/30/2018 11:23 PM (GMT -6)   
Rikky1 said...
good to hear LDN is working for some. girlie and me? didn't do squat. i think it all depends on how the bugs are affecting you. mine seem to be all nerve related to i wouldn't think LDN would do much unless my immune system was overreacting and causing the nerve issues. alas i'm pretty sure its my brain doing all the screwing up with the nerve firings.

always have an open mind to trying different things you never know what'll work for you.


My worst symptoms are CNS driven, too: Nerve pain, shivering, POTS, head pressure....
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

OptimisTick
Regular Member


Date Joined Jan 2016
Total Posts : 103
   Posted 1/31/2018 1:38 AM (GMT -6)   
Not sure how much you are taking, but my LLND had me starting at 1mg/day for 4 or 6 wks (can't remember.) After that, I've been at 4mg/day and WOW! I'm getting results like Aurora; less joint pain, sleeping a little better and a bit more energy. I'm pleasantly surprised with what LDN is doing. I followed the mantra here - low and slow 😉
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 : 33795
   Posted 1/31/2018 3:20 AM (GMT -6)   
I think I started at 1.5 mg, then after a couple weeks...did 3.0 mgs...and then 4.5 mg.
..or something like that.

I can't remember if I stopped at 4.5 or upped to 6.0.


Question: Is it something that you will probably be taking indefinitely? Or is it just to help while you're treating?
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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