Exhausted

Why th do I feel so tired after stopping abx? Is this normal? Does this mean my infections haven't cleared and I needed to stay on abx longer? I've heard some ppl on here say they stopped abx and felt like crap so they had to go back on it because they weren't 100% cured or on it long enough. How do you know though?

MedicalNerd: You've mentioned adrenal problems before, so I'd suspect that again.

Were you taking only sulfamethoxazole and azithromycin, or the trimethoprim/sulfamethoxazole combo?

astroman said...
One other thought. The antibiotics were creating a herx, which gave you anxiety. Low levels of anxiety can be confused with energy.

Did you have a light sense of anxiety while you were on antibiotics? If so, maybe that’s why you did not feel exhausted then.

It’s not until anxiety starts to get really elevated that we notice it’s abnormal.

——————-
Also When my thyroid is low, I get anxiety and then it disrupts my sleep, even though I’m absolutely exhausted. It’s kind of like too high of cortisol you’ll feel wired but tired. Doctors automatically assume that anxiety in someone taking thyroid supplement means they’re taking too much and are hyper, no, they are not correct.

Anxiety is a different type of energy than hyperness. They sound the same but are not. It’s hard to explain. I’m lost for words here. I have been hyper on too high levels of thyroid med and all I can remember is that it was a different type of energy than anxiety.

This is a really good point that I hadn't thought of. While on abx, lots of my anxiety actually disappeared though and I was asleep the whole night heavy. Now that I've stopped abx, i started waking up multiple times per night just like before I started the treatment which is why I'm concerned I didn't stay on abx long enough or the infections haven't cleared all the way. Is that a possibility?

Anti inflammatory / chelating aspects of abx?

how long were you on abx in total?

Garzie said...
how long were you on abx in total?

9 or 10 months total

as above there are a number of possibilities

macrolide antibiotics do have some anti-inflammatory effects - though not normally enough to remove lyme symptoms on their own - stopping them could cause higher levels than while taking them - and that could manifest as sleep problems after stopping them

the gut microbiome changes are a good theory also - but these can happen after stopping abx also - where a new balance has to be found - and there can be a period of disturbance for some weeks after stopping the abx while the system settles down

lastly - and i do apologise if its not a welcome thought - but 9 months is also a relatively short time period for someone with complex chronic illness to reach remission - studies and reports from LLMDs put the time frame at 2-3years for most difficult patients - if they don't run into blocking factors - so it is also possible that there is some form of partial relapse happening

the good news is that its rarely as bad as the first time around - and you tend to have a better idea of what works

it could be any of the above - or something else entirely ( its v hard for anyone to diagnose over the internet )

my thoughts are perhaps its worth trying a couple of weeks of abx - and see how you feel on that as a trial
eg do you herx - which would tend to point towards ongoing infection
and
does your sleep improve again

if a trial of further abx convinces you you still have more treatment to do - it might be worth considering tapering off abx with a pulsed approach - rather than cold turkey

i hope its of some help!

So everyone, all of my symptoms are back as far as stiff neck, lack of sleep, sore feet, ribs, legs to the touch, off balance? Should I go back on the abx? Only thing that stopped was diareah which is great bt at this point I'd rather have the diareah back then to feel like this.

When I first answered on this post of yours, I use the word also. Because what I was referring to was, I think you had another post almost nearly identical to this that nobody, But myself and a few others answerd.

And on that post, the other one, I mentioned that while I was on antibiotics, I had a continuous light anxiety. When I went off of the antibiotics, the anxiety went away, which actually brought me to a more calm tired state.

There are two different different types of exhaustion: (Maybe more depending how Descriptive):

1)Being comfortably tired, meaning you can too easily fall asleep and are not anxious. Driving is dangerous in this stage.

2) Being wired but tired. (Antibiotics, low thyroid, and too much cortisol does this to me ) Which is just what it sounds like. You have a wired type of light anxiety mixed with being tired. It’s a terrible feeling because you are exhausted, but dont Get into Deep sleep. In this stage, although you were exhausted, you have too much nervous energy to fall asleep behind the wheel of a car.

Back a few months ago when I was complaining about insomnia made a post on it. I had the number two type of exhaustion. Particularly this time it was low thyroid levels. When I’m extremely low thyroid, I have anxiety and cannot sleep, which is the opposite of a doctors assume. Then one of my up my meds a little bit, I transform into the comfortably tired stage. That means I can pretty much fall asleep on just about anytime. That is still being too tired though once I upper my bed my meds for the third time if I’m lucky then I get to the normal amount of energy and ability to sleep .

This may sound like gibberish, but I describe different stages of sleep from insomnia to actual normal sleep. Although I am talking about sleep and you were talking about energy, they are two sides of the sameCoin.

Just some more things to think about.

astroman said...
When I first answered on this post of yours, I use the word also. Because what I was referring to was, I think you had another post almost nearly identical to this that nobody, But myself and a few others answerd.

And on that post, the other one, I mentioned that while I was on antibiotics, I had a continuous light anxiety. When I went off of the antibiotics, the anxiety went away, which actually brought me to a more calm tired state.

There are two different different types of exhaustion: (Maybe more depending how Descriptive):

1)Being comfortably tired, meaning you can too easily fall asleep and are not anxious. Driving is dangerous in this stage.

2) Being wired but tired. (Antibiotics, low thyroid, and too much cortisol does this to me ) Which is just what it sounds like. You have a wired type of light anxiety mixed with being tired. It’s a terrible feeling because you are exhausted, but dont Get into Deep sleep. In this stage, although you were exhausted, you have too much nervous energy to fall asleep behind the wheel of a car.

Back a few months ago when I was complaining about insomnia made a post on it. I had the number two type of exhaustion. Particularly this time it was low thyroid levels. When I’m extremely low thyroid, I have anxiety and cannot sleep, which is the opposite of a doctors assume. Then one of my up my meds a little bit, I transform into the comfortably tired stage. That means I can pretty much fall asleep on just about anytime. That is still being too tired though once I upper my bed my meds for the third time if I’m lucky then I get to the normal amount of energy and ability to sleep .

This may sound like gibberish, but I describe different stages of sleep from insomnia to actual normal sleep. Although I am talking about sleep and you were talking about energy, they are two sides of the sameCoin.

Just some more things to think about.

Nonsense this isn't gibberish, actually makes sense. I definitely am feeling #2.

MedicalNerd said...

Girlie said...
Did you treat for Babesia?

ie Mepron ?

I did not! This was one of my big concerns all along. My llmd said lts wait until my blood test results come back. He tested for some thing for babesia, not sure. G6 something whatever. Feel like it's bart. I'm feeling extremely irritated and rage all over again to where I just snap and the stupid smallest things and feel overwhelmed to where I can't handle any amount of anything just like before I ever started treatment.

////////////////////
This must not be a LLMD?
You can’t rely on tests for diagnosing.
Many many false negatives.

If it were me - I’d do a couple months on abx including Mepron or Malarone

Girlie said...
When I was first diagnosed - I went to the only Lyme literate dr. near me. He was an LLND and although he could prescribe abx - he wasn’t licensed to prescribe Mepron or Malarone (the strongest pharma for Babesia)
I did get a few months from a healing well member….but not enough.
I was treated by the LLND for approx 3 years. I had recovered to about 80% but still had a few issues.
Then I decided to go to who I thought was the best (IMO) LLMD on this continent.

After stabilization, he prescribed Mepron - even tho my symptoms seemed to lean to Bartonella. (Plus I had many cat scratches/bites growing up.)


Then I did the Bart/Persisters protocols

It worked! The herxes were horrible ! But it worked!
I am now back working after being off for about 8 years.

Sounds promising! I feel like a lot of LLMDs will tell you "let's try some babs treatment next visit" because they want you to keep paying to fome bk when they could have started it the same visit you were there, which does get me frustrated sometimes. He did want me to start methylene blue and says I can take it with the bactim . I'm thinking of going back on the bactrim anyway because of the way I feel being off of it is terrible no matter how much I detox.