Now I understand how LDN is useful for Lyme

OK....I know many LLMD's recommend and prescribe LDN and I had a general understanding of it due to prior research for my autoimmune condition.

It made sense for me to ask my LLMD for a prescription without further research and in the knowledge that many on here benefit from it.

That said, another member on here (thanks Janet :) shared a great link about herxes:

www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/

I think this paragraph explains why immune-system-modulating LDN is effective for us Lymies:

"Historically, the theory has been that the reaction is caused by dying organisms releasing endotoxins. Recent experimental research suggests that the rapid and massive overstimulation of the patient’s immune system causes the symptoms. The immune system’s job is to recognize and attack foreign antigens in the body. When dead organisms spill their internal contents, a huge number of foreign antigens become present all at once. The body reacts by releasing immune system modulators (or cytokines) (e.g., Interleukin 6, Interleukin 8, and tumor necrosis factor, among others). These cytokines are what cause the fever, chills, and low blood pressure. Either way, the body gets assaulted and fights back."

How 'bout that? ;)

happyjo said...
I have to thank u, too, cd for being there--fielding my blather! I was having a horrid downward spiral, crazed with anxiety with what to do after taking 2 days off --and guess what my calming sensible friend? U were right! And I even turned it up a knob to 4.5. Well, at least today's report is good! (jinx, jinx!).

Happy to help and, even happier that you have good news to report, happyjo! May it long continue!

Thanks for the posts, sillysheep and bluebyyou!

Happy to hear LDN is working so well for you, blue.

I must admit that the only "early" difference I noticed was that I feel more "even". Almost 6 months after starting it, I'm finding that I need thyroid hormone dose DEcreases....when I'd been needing monthly INcreases once Lyme hit.

Besides helping me heal from Lyme, I had this hope it would improve my autoimmune thyroid issues to at least help me stay stable. In an ideal world, it would help me get off exogenous thyroid lol

I have read that it can take up to a year to experience the full effects of LDN.

Whatever it is, it seems good - really good :)

dmw52

I don't recall anyone sharing instances of symptom flares after starting LDN. If anything, they might experience the common side effect of insomnia and/or vivid dreams that usually passes further along in treatment.

I've read more stories of immediate improvement.

Best of luck to you with LDN! Please keep us posted.

marigold33 said...
cd3764, How did you know you needed thyroid decreases?

I long ago identified the types of FreeT3 and FreeT4 levels that keep me free from thyroid symptoms. Keeping a daily symptoms journal as it correlated to my labs allowed me to do this.

My thyroid function was soooo erratic for years that I see my GP for thyroid labs every 4-6 wks. I learned this frequency was good for me through trial and error.

I have been able to avert the development of most thyroid symptoms by getting those labs done every 4-6 wks..... and asking (or sometimes convincing ;) my doctor for needed dose adjustments if my levels strayed from my "comfort zone".

My most recent labs showed both my FreeT4 and FreeT3 to be well over-range.....I feel best with the FreeT4 slightly over-range and my FreeT3 around 75-100% of range. I was feeling fine.

I asked my doctor to lower my dose and I went down a little lower for a few days to expedite the return of my levels to my "comfort zone". I've just now started my new doses and am none worse for the wear

The only symptoms I had were achy knees (which might have been part of a Lyme herx)....and a vice-grip feeling I had in my elbows for one day....a lot better than the developing the debilitating fatigue, hair loss, constipation, muscle aches, brain fog, etc. that could take as much as 4 wks. to resolve when I didn't get labs done as frequently as I usually do.

Aren't you glad you asked? lol

I am really sensitive to drugs, so my LLMD prescribed .5 mg of LDN. After 3 days I was so loopy and fatigued and beginning to get depressed. Yesterday I didn't take my dose, and already starting to feel better.

I read that some patients do flare, and my doctor said to take it slowly, and pulse. I read on the LDN yahoo group that if you have yeast or a bad Lyme infection, the LDN isn't as helpful unless you reduce those pathogen loads.