Simple change improved my sleep significantly ....

thought i would post this here as insomnia and sleep quality issues in general are one of the main commonly reported symptoms of Lyme and associated diseases - including Bartonella

i do not have insomnia as such any more (i am part way recovered) - but i do still have issues with less than idea sleep duration and quality.

what i have noticed for some time now is that my functionality is heavily dependent on how much sleep i get and the quality of that sleep. This is not just a general impression - but something i can measure quite objectively

eg
--my daily walk is measurably faster and my body feels more mobile - less stiff -
--the number of tasks i can get done in a day increases significantly
--any planed exercise generally goes better and is more enjoyable
-- i am generally dragging myself around less and enjoying the day more
if i sleep well for even one night - by which i mean 8hrs vs 7hrs - and even more if i sleep well for 2 or 3 nights in a row

if i can keep this up - then my overall health also moves forward -

you wouldn't think an extra half an hour or so would make so much difference - but it does
many LLMD's also emphasise the need for good sleep in order to make recovery possible and focus their initial treatment on trying to correct this. eg Horowitz, Dr J etc

as a result i have focussed quite a bit of time an energy on this over the past 12 months or more - and it has been paying off - but i had so far settled to an average of around 7.5hrs sleep per night - which is OK - but not quite ideal -
(all the studies show a healthy person needs at least 8 hrs regular sleep to function at their best and chronically ill people may well need more than that ) - but its actually quite hard to move the needle.

BTW the average in our western culture is somewhere under 7hrs per night at present - and this is likely contributing to the epidemic of chronic disease - including those that are the result of immune system dysregulation.

having recently moved house - and gradually getting things more the way i would like them i recently fitted a black out blind to my bedroom - so that at night and in the early hours of the morning in summertime its actually properly dark in my bedroom ( the bedroom in my old house was dark - but not fully black out dark)

to my surprise this has resulted in a step change in my sleep of and average 0.5hrs extra sleep per night.
this may not sound like much - but its more than i can get from all the sleep supplements in my regular stack ( melatonin, theanine, inositol etc )
and its not a linear thing - at 7.5hrs i am below par all the time - at 8 i am functioning at my best yet in terms of walking speed and task i can do in a day.

just thought i would post this us - as with one simple change - for a fraction of the price i spend each month on supplements - and very little effort - i got a bigger result - and where sleep is concerned - every little helps.

so maybe others here can benefit

Great advice Garzie! Thank you. I have this thing sometimes where I wake up and feel like I didn't really wake up. The weird part comes in when I go back to sleep at that point, even if it's just for 10 minutes, I seem to *snap out* of the sleepiness.

It's strange, like the "on" switch didn't go off after the first time I woke up, so I need to "wake up a second time". I will literally drag myself through the entire day if I don't go back and wake up a second time. It doesn't really seem to correlate with the quantity of sleep either.

i also have some odd effects around sleep and waking 1st and feeling rough / groggy - then sleeping again for only a short time and feeling much better - dont know the cause - poss. something to do with cortisol not kicking in as strongly as it should / or as early as it should - cortisol problems are a known feature with bart and chronic illness in general
i also notice a strong tendency for my days to become offset towards later starts and more activity later - which is again a common sign if the body struggling to produce enough cortisol early enough

cortisol should be a strong spike early in the day to help us get going - and then taper off for the rest of the day

this is often not the case if we are in what used to be called "adrenal fatigue" mode - and here the body may just never produce enough - or may produce its spike later in the day - and essentially give a reversed cortisol daily rhythm.

our habits / behaviours can tend to re-enforce and worsen the offset of this cycle as we try to cope we the typical morning fatigue by doing less in the mornings - and evening energy by doing more in the evenings - but i work to try to normalise it as best i can as its not good for our health overall - when it is offset

i know Dr M uses cortisol with a lot of his bart patients and is on record saying some just will not get better without it

i think he originally started using it because rifabutin or rifampicin is thought to speed up liver metabolism of cortisol - lowering the levels further in people who already have low levels - and so they started supplementing - mainly in the mornings i think - less or none in the evenings - seems to help some people quite a bit

i keep meaning to order some from one of the online pharmacies to try it for an experiment

i think typically only 10mg in the am - and maybe 5 at lunch

Vimzor said...
Be very very careful with using cortisol. Prolonged use will shutdown your own cortisol production. And it might not recover like how it was before.

I did 2 months 30 mg / day in 2012 and my hpa axis never recovered. Should have never listened to that stupid doctor. I would have been healed years ago if it wasn't for my cortisol problem.

that's good to know Vimzor - thanks for posting the warning

can i ask - what issues with the HPA do you experience as a result ?

Garzie said...


that's good to know Vimzor - thanks for posting the warning

can i ask - what issues with the HPA do you experience as a result ?

I developed some sort of adrenal insufficiency.

Before I knew I had Lyme I knew something was wrong with me. But it was mostly neurological & some joint pain. I could run 14 km, I could swim, I could ride my bicycle for hours, I could do stressful things, if you looked at my activities I had a normal life. It was my brain that wasn't working. And sometimes very weird tiredness which made me sleep earlier but nothing else.

A doctor convinced me my cortisol was too low (in fact, it was too high at the time..) and started me on a full replacement dosage. After two months he said I could stop but the damage was done.
It took me a year! to taper down. The year of hell. And I was never the same. I could only walk a couple km, I couldn't ride my bicycle anymore. I developed some kind of weird PEM. I became very stress sensitive and thus avoidant of conflict, I felt weak all the time. I'm still not normal.

It cost me my twenties. I could have lived an almost normal life even with Lyme. But not with low cortisol. I can't date, the stress makes me literally sick.

Naturally no doctor believes me. Without this problem I would have been cured years ago. It constantly sabotages my Lyme treatment.

So I wouldn't mess with steroids on my own if I was you.
There are herbs that can raise cortisol. Licorice, siberian gingseng, .. Or meds like wellbutrin, raises acth and dopamine.

Or just plain simple coffee. Coffee raises acth which in turn raises cortisol.

Post Edited (Vimzor) : 7/30/2022 9:23:08 PM (GMT-7)

Just a note - when I mention to Rainy "Using smaller doses is a good idea," I didn't mean to suggest he should do so. My point with prednisone was more how it can mess a person up. The thought was if he was going to try it, small doses might do less damage, if it does damage something

Vimzor - I don't know how you could handle 2 months of 30 mg. Totally understand your frustration, looking back. Back when the doctor had me on it (and I was clueless to any meds back then because I had rarely used them until then), even getting down quickly to 10-15 mg was still hard on my system.

Any use of prednisone would have ne worried, and I should have made that clear.

Please don't worry running wild, you have enough on your mind. I didn't take it the wrong way at all. I have used several of them before (hydrocortisone, prednisone, prednisolone etc.), so I know what I'm dealing with.

The problem is I that forgot if that "double waking up" thing went away when I was on them. Hence possibly wanting to try a small experiment once to see if that's the case.

All is good my friend 🙂