LDN Success?

Nic,
I don’t know anything about LDN, but I am wondering two things.

1. MCAS - could your symptoms be from MCAS? Have you been treated for MCAS?

2. Did you do an ERMI on your house and office to determine ongoing exposures to mold? I can’t remember what you said about the ERMI. I remember you did do the urine mycotoxin test and did some positives, right? If I remember right, you assumed it was from past exposure. Just wondering if you ever verified by ERMI that you are not in ongoing exposure at home or the office.

i am currently using LDN for the last couple of months - so just ahead of you in this experiment

have been updating thsi thread with my progress/experiences

https://www.healingwell.com/community/default.aspx?f=30&m=4224482#gsc.tab=0

adverse symptoms are common for me at every dose change - but after a few days, things improve to better than they were before so I am sticking at it.
this last dose increase was after more like 4 weeks though - so I would say in Lyme - 2 weeks per dose change is optimistic for most - everyone is different - but Lyme people seem to be v sensitive to this.

it's worth learning about how it works if you haven't already - as its not a conventional medicine and is likely to make you feel worse before you feel better - the sicker you are - the more sensitive you are likely to be and less able to tolerate it - or have to go v slow.

this seems to be a reasonably authoritative site
https://ldnresearchtrust.org/

I tried it prior to knowing I had lyme.
(2013?)

It didn’t help me - I’m fact I felt worse at night when I was on it.

k07 said...
Girlie - it makes almost everyone feel worse. The key is starting low enough that you don’t feel bad and possibly switching to morning dose if it’s effecting sleep.

I did start low - but didn’t switch to morning dosing.
At that time I wasn’t on the forum - it was about 5 years ago - pre diagnosis - my Dr didn’t know anything about it. I had just seen it on the Internet - and she was willing to prescribe it.
It ramped up my pain.

Yeah, and most people say you also need to be treating the Lyme while taking LDN, or have treated considerably before you try it -- otherwise you're just going to feel really, really sick. There are so many people in the Facebook group who have been diagnosed with "chronic fatigue," and they start LDN and get horribly sick, and they don't understand what is happening.

agree with the above comments - I am on 2.25mg a day in the mornings now having just stepped up from 2.0mg and even with this small change in dose the first few days on this dose also lead to worsened sleep problems and more pain - this does seem to pass after a while and then I feel better with more energy - seems to be a "no pain - no gain" option - but you have to go slow of the pain bit gets too much to be tolerable.

i would also say the more ill you are the more care you need to take - the doses are tiny but the effects are not to be underestimated!

i would also caution people from regarding it as a stand-alone treatment for Lyme - i think it's best thought of as a supportive therapy, helping to address inflammation and autoimmunity and maybe pain syndromes - but alongside a comprehensive program for the root causes.

Just an update - I moved up to 1.5mg because my side effects weren't too bad on 0.5. Last night was my third night on 1.5mg and I feel like I got hit by a bus. I'm sore everywhere, have a headache and feel extremely weak and tired.

Can LDN actually cause a herx? That's almost what it feels like.. I'm hoping it's just a good thing and will pass and I will feel better when I get through it, but its rough.

Post Edited (NicHostetler) : 1/19/2021 5:53:29 AM (GMT-7)

Yeah, from what I've read, the endorphins that are produced while the opioid receptors are blocked, are supposed to help with pain and inflammation. The body is balancing the TH1/TH2 inflammation response.

I took LDN a couple years ago and stopped but don't really remember why. I think this time I'm going to keep chugging through it and see if these side effects diminish and if they do, how I feel when they do. I am going to continually slowly work up to 4.5mg a day. However, I'll wait two weeks this time before I increase again rather than just a week.

thanks for the updates

i also get pretty strong reactions if i step up the dose more than 0.5mg
in fact, this time i stepped it up only 0.25mg as the last step of 0.5mg was pretty harsh.
in my case pain, sleep disturbance mainly

this rough feeling may not only be a reaction to the opioid receptors being blocked temporarily - but an immune-activating step when the opioid rebound occurs - and in this case, it could indeed be a herx like effect as the immune system switches itself back on more in a way that enables it to fight infections, etc.

for me most of these adverse reactions seem to die down within about a week of each dose step but as i have lost sleep and feel generally rough during that time - i am giving it 2-3 weeks between steps at present.
i have a feeling that this is still fast for those with Lyme.
energy and productivity continue to improve
exercise tolerance seems to keep improving - especially strength training
sleep still up and down more than I would like

almost 3 months now Nic.
i started at 0.5mg / day and have been gradually working my way up - at 2.25mg a day now - taken 1st thing

I would say after the first few weeks I started to notice getting more done - once the adverse effects wear off.
it's not night and day - and hard to spot at first as mainly I just had disturbed sleep and more pain and if anything the mornings were more slowed down. ( that my worst part of the day)

i do track everything i do and how much i can exercise etc very carefully though - as I'm an optimist by nature and i needed to guard against wishful thinking making me think things were getting better - when they were not - as i need that to guide treatment decisions.

so i use objective measures like - how fast can I walk over a set course ( i walk each day)
how many weights can i lift how many times ( started strength training a few months ago as part of my treatment) - how much sleep did i get - how many chores did i do that day - those kinds of things that are not subjective. Profound Fatigue was my most pronounced symptom so these are useful measures for me.

to try to quantify
in the 20 days prior to starting LDN - on average, i was able to walk a fixed 2.7mile course in 37:30
in the last 10-20 days, I have been able to walk it on average at 35:30 and do not feel the old laden down with sandbags feeling most days anymore.

similarly - before starting the LDN i was able to do 11 tasks a day on average ( just routine chores like cooking a meal, putting the rubbish out, exercises, preparing tinctures - that kind of thing)
in the last 2 weeks on LDN this has increased to an average of 14 tasks a day - but up to 17 some days

i am doing a lot of other things as well though - detailed on the other thread - and was improving very gradually before starting the LDN - so I cannot say with certainty which is really making the biggest difference - but i do feel a step since starting the LDN and plan to continue as you mention - towards a target of 4.5mg / day

hope this helps

they do say - those that have strong adverse effects in the beginning with LDN often gain the most from it - but that is of course the old "no Pain - No Gain" addage

I started a couple of weeks ago on 1mg/ml - taken at night, and yes... very vivid dreams, but not really any sleep disturbance. After about 4 weeks we're up to 2mg/ml - and I always sleep lightly/wake multiple times anyway, so I don't use sleep to qualify things. But, as Garzie said, I notice it in the improvements overall in just some baseline quality of life. I also had some headaches in the first couple of weeks, but they infrequent now.

I will say the first couple weeks were rough - in general, but upping the detox game seems to have helped. Lots of activated charcoal (sometimes even in the middle of the night), lots of lemon water - spaced away from herbs, and medicine, Epsom baths, castor oil packs, and light movement. (I mean...featherlight.)

It seems like the right increase for where you are at in your process is key.

https://www.healingwell.com/community/default.aspx?f=30&m=4224482#gsc.tab=0