When you started taking LDN, did you see an increase in your symptoms before you started seeing some benefit from it? Almost similar to a herx?
If so, how long would you say the flare lasted before you saw improvment?
Thx
Posted by djf2005 (Member # 11449) on :
I have not yet started it but I am looking forward to it as I have some experience with nalexone, which is similar to naltrexone.
when i switched from percoset to suboxone (which has nalexone in it) i gained more functionality than on any abx.
(speculating the nalexone was helping reset my immune system as the naltrexone is rumored to)
anyway, yes, it was hard, and i was worse for a week or so, but that could have also just been coming off the pain meds.
good luck, i am hoping it is going to be a big contributor again to my health, just have to wait and see.
-d
Posted by dmc (Member # 5102) on :
I just started back on LDN. just 1 month now. No noticeable increase in symptoms but did cause havoc with my hashimoto thyroid. (hypo)
I knew this would happen from info on the lowdosenaltrexone.org site
Saw my endo today...my TSH is .03 range is 0.40-4.50 Having hot flashes, night sweats, brain fog, headaches...don't feel well.
I'm on 3.0mg and will stay on that.
Was on LDN prior to Lyme dx. (the founding MD, dr. bahari was my "MS" doc at the time).
Posted by DaveinCt (Member # 5818) on :
Hey DMC:
I also have Hashi and have been concerned about the issues with that. I started on 1.5 for a week and then went to 3.0 for another week, and just 3 days ago increased to 4.5.
It's now at the 4.5 where I'm having challenges but, I don't know if it's my thyroid or a flare in my Lyme symptoms Posted by Hoosiers51 (Member # 15759) on :
I didn't herx in response to LDN, but after starting LDN, adding new antibiotics would make me herx. But it wasn't a miserable type herxing, it was more like, "wow, my head hurts. Wow, my knees hurt."
So did you add any new antibiotics or antibiotic herbs?
Some people do herx in response to LDN though....but from what I read on Lymenet, it seems like people either herx SUPER hard, where it's so scary they stop LDN, or they don't really seem to herx much.
Posted by DaveinCt (Member # 5818) on :
Thanks Hoosiers:
No, my LLMD had already had me stop Abx, etc. and wanted to see what the LDN would do by itself, especially sinceI wasn't responding to Abx after several months of treatment.
Posted by Sammi (Member # 110) on :
Hi DaveinCt. I have been taking LDN for several months, and I also have Hashimoto's. The LDN has not affect my thyroid function.
I did not notice an intensification in symptoms, but it seems like it would be possible because it is supposed to help the immune system.
It can cause insomnia in some people for a couple of weeks.
Posted by nomoremuscles (Member # 9560) on :
My syx got MUCH worse for about 2 weeks at each dosage. I started at 1.5 and stayed there until the herx faded, then moved to 3 and got whacked again for another two or so weeks. Then I moved to 4.5 and another flare.
It was very difficult, but I definitely think it was a herx. For me it was worth it -- the LDN was very helpful.
Posted by DaveinCt (Member # 5818) on :
nomore:
Thanks for the reply....That's very interesting that you flared like that.
After you went to the 4.5, how long did it take until it started actually helping you and calmed down the flare?
Dave
Posted by minoucat (Member # 5175) on :
Dave, I started at 4.5. I can't say my sx increased particularly, but emotionally I was out of whack -- very anxious, tearful, irritable -- for the first month. Some sleep disturbance but not much.
I don't have any known thyroid issues. I do take very low dose adrenal support.
Things have settled down emotionally, and I think the LDN is helping my energy levels and my immune system. (as compared to the 3 months preceeding LDN). Nothing hugely dramatic, but I get through the day much better and I'm happier and much clearer headed most of the time.
The hubby also started at 4.5. The emotional side effects were much stronger for him, and he ached a lot more. Stopped after 3 months -- he didn't think it helped him at all.
I think that the stage at which you take things in your healing can make a big difference. I'm off abx and seem to be sx free at this point. My feeling is I've gotten rid of all the coinfections, but still have latent LD. I'm hoping to keep it latent. This is the second time I've tried LDN -- I was a lot sicker the first time, and it seemed to just make me feel crazier but didn't help my sx.
Best of luck. I'd be very interested to know how it goes for you.
Posted by TerryK (Member # 8552) on :
I finally stopped a few weeks ago because the insomnia only seemed to get worse as time went on. After 3+ months I was only able to get around 3 hours of sleep a night.
I'm still not back to normal but last night I managed to get 5 1/2 hours last night.
Even with the insomnia I think it helped my immune system.
Terry
Posted by btmb03 (Member # 18394) on :
Interesting thread - TerryK, for you and others who experienced insomnia, would it have been beneficial to do an a.m. dose vs a p.m. one? Glad it helped your immune system!
Posted by CD57 (Member # 11749) on :
I think I'm going to try to add it back in as an AM dose and see what happens. I got that insomnia that didn't really go away.
Someone posted on here that it is raealy a "stop progression" drug not an immune booster. Is that true?
Posted by minoucat (Member # 5175) on :
AM dose did help for me -- I forgot I had to switch. I take it at 6 am.
Posted by DaveinCt (Member # 5818) on :
Just updating my earlier post. It's now been a week on the 4.5 dose (after ramping up over 3 weeks)and I've been sick virtually everyday!
Waiting for labs to see if my thyroid levels are in play, but this is not fun. I swear it feels like the herx(s) I would get when I'd start Abx in the past....almost as intense.
I wake up in the morning with tremors, muscle aches, dull headache, some dizzyness and even occasional nausea!
Argh...thx for letting me vent.
Posted by Sammi (Member # 110) on :
Dave, I am sorry you are experiencing this. Did this happen on the lower dose?
![[Frown]](frown.gif)