I just started it about a month ago. The information I read sounds very promising.
Has anyone noticed any IMPROVEMENT on it? I also started tindamax and have noticed improvement with my back pain. Some times I wonder how I'm supposed to tell whats working when I'm on so many meds!?
Posted by D Bergy (Member # 9984) on :
LDN is a very subtle treatment and it may take six months or more to notice any improvement. It just makes your immune system work more normally. This certainly should help in the long run.
I use LDN for Crohn's disease. I am very satisfied with my results.
I would ask your doctor if you should stop taking LDN if you get any Flu symptoms. It appears that this Swine Flu can be deadly if your immune system over responds to the virus. Since LDN is an immune system booster, it may not be a good idea to continue using it when infected with this particular strain of Flu.
Dan
Posted by MariaA (Member # 9128) on :
wellll.... LDN isn't automatically an immune booster- it evens out the immune system so that if you're making too much of something it'll downregulate it and vice versa. Or at least that 's the theory.
Posted by D Bergy (Member # 9984) on :
There is debate on whether it boosts or normalizes the immune system. But if infected with Swine Flu, a weaker or malfunctioning immune system would be preferable since it is the normal immune response that is getting people in trouble.
What I did not mention was the Flu I had last Summer. I get the Flu every so often and normally do not even miss work. I rarely get sick enough where I cannot function.
This Summer was different. I got the Flu and was having a hard time standing. I shook so bad I thought I was going to shake myself apart. I finally went to the doctor. I never go to a GP unless I have no alternative. I thought I might have West Nile virus or something more serious than the Flu.
No virus was identified, but my Uncle got the same illness but never was as sick as I was.
My Liver enzymes were high, which is not typical for the Flu. Liver stress is not something I have ever had.
Now there could be any number of reasons for this. The improved immune response from LDN is just one possibility. I do think it is something that should be discussed with your prescribing Doctor.
As a side note, I do not think MMS should be used for Cold or Flu viruses either, for similar reasons. The kill off is too intense for the body. I have done it before, and it is better to let it run its course.
Dan
Posted by lymeHerx001 (Member # 6215) on :
llmd wants me on this
Posted by MariaA (Member # 9128) on :
Do a search here- there are a lot of threads on Lymenet about it, with multiple users' experiences. Some were negative, some were positive.
Posted by sammy (Member # 13952) on :
I've been on LDN for a couple months. Seems to be helping with pain.
I didn't have much joint pain until I started treating Lyme aggressively. NSAIDs weren't helping, can't take narcotic pain relievers because I have to work. Main symptoms are neurological, similar to MS. LDN has helped people with MS. That's why my doc had me try LDN.
Had some crazy vivid dreams at first but that's for side effects.
Posted by Nutmeg (Member # 7250) on :
I'm doing well on LDN too. I've been on it for two months.
The crazy dreams have subsided.
I sleep better and have less joint pain.
Nutmeg
Posted by MariaA (Member # 9128) on :
I just stopped taking it after almost a year, because I felt like it was contributing to my insomnia. but it could be that something else is doing that.
Posted by n.northernlights (Member # 17934) on :
I had side effects at the beginning, like headache and low blood pressure, but that went away. It really lowered the thyroid antibodies and got my TSH up from 0 (docotor alsoways wanted me to lower thyroid meds down and get me hypo jut because of this stupid low TSH, whereas only ft4 and ft3 are relevant) Can't say anything about flu or colds becauese I have not had any.
Posted by lymeHerx001 (Member # 6215) on :
so maria, do you still have insomnia?
I take xanax, benadryl, ambien to sleep,
ocasionally methocarbinol too!
Posted by MariaA (Member # 9128) on :
yeah, my insomnia comes from several different sources, I think- hormonal stuff (high cortisol at night, I think), thyroid issues, poor nighttime sleep, and drinking coffee all day to compensate. It doesnt' help that I haven't been living in one place for months now so I'm constantly not in control of my own sleep schedule.
So I'm trying to eliminate a few of these and tried cutting out the LDN to see if sleep gets better. I 'm not sure if that helped or not, I'm also using 1/4 of a klonopin to try to get into stage 4 sleep and it seems to help without side effects. I'll add the LDN back in soon.
Posted by lymeHerx001 (Member # 6215) on :
sounds kinda like alot of us MariaA,
Cant really pin point it, but its basically a hypothalmic stress imbalance.
Our bodies are just always stressed!
Posted by lymeHerx001 (Member # 6215) on :
thanks for all your responses it sounds milld bu powerfull
Posted by Lymeorsomething (Member # 16359) on :
does it help with fatigue at all?
Posted by kimwg (Member # 19094) on :
It seems to me that LDN would be good to take once antibiotic treatment is ended after Lyme symptoms are mostly gone -- perhaps a well-modulated immune system would be more effective in keeping any remaining bacteria at bay so that the infection could not reestablish itself...
Posted by TerryK (Member # 8552) on :
I think it would be good during treatment because it helps with inflammation, pain and normalizing immune system function. All things that are a problem while in treatment.
Killing bugs causes inflammation which causes a lot of symptoms. Pain is also higher while herxing, at least for me.
Some of us have over-reactive immune systems. I have tons of allergies which are partly related to my immune system dysregulation. My sister developed lupus while on abx for lyme. LDN should help normalize the immune system.
I've heard a few people mention that it helps with fatigue but haven't done a lot of research on that aspect. Guessing, I would say it depends on the person and the reason for their fatigue. If a person has a lot of pain and it helps reduce pain, that could help with fatigue. Lots of pain is very fatiguing.
Allergies can also produce fatigue. If it helps reduce allergies, that may reduce fatigue.
I'll be staring on LDN soon. I really hope it helps. I'm also thinking about trying to find someone to prescribe it for my husband's psoriasis.
Terry
Posted by Nutmeg (Member # 7250) on :
Lymeorsomething,
It's helped a little with my fatigue. Part of it is I'm sleeping a little more restfully, so my body has a chance to do a little repair during better quality sleep.