I will contribute here where I am able - although I have also just started
i have been interested in this for quite some time - and have been reading up and preparing to take it - but wanted to have all other medications/herbs/supplements stable before embarking on it - as its likely that the first few weeks/months can be tricky - and prior experience with other trials has taught me that things rarely go exactly to plan when something complex like Lyme is involved. for this reason, i didn't want any other changes in the mix to confuse the picture of what was going on.
as some context - i have been ill for almost 6 years now - fatigue, joint pain and swelling, gut issues and headaches, and sleep problems have been my most limiting symptoms.
aside from the recent addition of LDN, i am taking quite a lot of things for my Lyme and suspected Bart - mainly a comprehensive protocol of herb tinctures following closely Buhners books for Lyme and Bart
and also black seed oil and a number of other supplements especially for detox support ( eg alpha-lipoic acid, NAC, MSM, L-arginine, vitamin C, vitamin D3, Vitamin A, zinc, selenium and B vitamins)
these have been gradually added and ramped up over the past 12 months or so - to give my body a chance to get used to them without huge herx reactions - and to help me understand how i react to each of them and in what doses i can tolerate them - so the protocol has been highly personalized.
( i had tried just going in with everything in burners books in the past and the herx was so severe I just couldn't function and lasted weeks with no sign of let-up - so I resolved to go low and slow)
this approach certainly seems to be working - as I have made significant progress over this time and have much more function than at any time since getting ill. but progress is still very slow and steady and so i am hoping for another step from LDN.
i have had the most long term benefits from immune-modulating therapies - and I do feel that getting the immune system functioning again so it can do its intended job is likely one of the best approaches - if that is possible - so that is one of the reasons i am keen to try this.
i hope to benefit from both the anti-inflammatory effects of LDN ( esp reducing IL-6 - the cytokine typically responsible for poor sleep) and also the immune regulating function ( have Hashimoto's thyroiditis - and other suspected autoimmune conditions - gall bladder issues, gum disease, as well as general intolerance to many foods)
the literature suggests LDN does not interfere with many other medications or treatments - but as it can help resolve some chronic complaints any existing medications for those may well need to be adjusted along the way - eg Thyroid - so i will monitor this at intervals along the way
I have just started LDN - around 2 weeks ago
I started with 0.5mg - taken the last thing at night - as that was what i had read most people who self administer do ) - but found it interfered with sleep quite dramatically
i already had issues in this department and so swapped to taking it 1st thing in the morning and this seems much better. this is also what the LDN research Foundation suggests.
so far i have had only some increased aching in my joints and back and sometimes a sudden but mild pain in my head right after taking it the first few times - but this is mild and goes again quite rapidly.
i think i feel a little bit extra slowed down after breakfast especially some days, but this is my worst time of day generally so quite hard to tell.
i have had some days where fatigue is also marginally worse - eg while walking - mainly in the first week and even then it was again manageable. just a slight drop in pace from my best days.
am planning on trying 1mg soon and will try to update with progress
Post Edited (Garzie) : 11/9/2020 9:37:30 AM (GMT-7)