Bizarre random 1 day "remission"

[xebex]

So last week on Wednesday 21st April 2021 I had a bizarre 1 day remission. I don't know if it was full remission because I didn't do any strenuous activity but my step count went from an average of about 2000 per day to 6000.

On a day where I feel particularly good I might get up to 3000 steps but I will most likely crash if I go over 2500 steps.

Anyway this day I just felt different, I just felt like I could do all the things. I decided to walk to the grocery store and back - I haven't done this in about 2 years. I cooked easily and I took two other short walks near my home. I felt happy, and at ease, no symptoms and just a complete and utter sense, of "if I do this thing I will be fine". I had no crash at the end of the day and on Thursday I just felt a little tired, Friday I was back to my normal self and crashed after trying to do 3000 steps.

Interestingly i had a similar experience 6 months ago. I put it down to taking some Benadryl, but the next day i felt awful and i couldn't replicate the experience by taking more Benadryl.

This time round i had just started Lions mane, i'd been taking it for 4 days and had been feeling a bit more energetic those first few days before the remission.

The REALLY interesting thing though was that on both occasions the day before this "remission" I had been to the hospital for a cervical biopsy.

So what on earth? if it wasn't the lions mane or the benadryl (which i haven't been able to replicate) was my nervous system and/or immune system suddenly kick-started into action by the physical trauma of the biopsy? woahh!

Would love some thoughts and ideas on this or to hear similar stories if you have any?

 

[Judee]

When you had the biopsy did they sedate you?

When I had my colonoscopy they sedated me with something that caused "twilight sleep" and when I came home of course, I had to lay down for a nap.

After the nap, I felt slightly refreshed and I think it had to do with that sedative. I think it made me sleep more deeply.

Anyway, just a thought.

Edit: I've really only had one day in the last 40 years that I could say seemed like a remission and it was when I upped my potassium to try to help my aldosterone. For about 16 hours I had about 10% energy. After that I took more potassium daily for about a year and a half but could never get it to duplicate that day.

 

[xebex]

@Judee thanks for your thoughts, no they didn’t sedate me it was just a minor biopsy with no pain killers or sedation. It would make sense if they had use something but no.
It is so frustrating when something “works” but can’t be replicated it’s like the nervous/immune system says “no we can’t be having that!”

 

[Martial]

Have you ever looked into CCI or Chiari? If it's a mechanical issue in nature like that then there could be random periods of sudden remission due to de pressurization of brain stem.

 

[xebex]

@Martial - I've looked into it, I don't really fit the symptoms, but I am seeing a neurologist who may or may not be willing to look into that, waitlists where I am are insane though. If anything I should have been worse because I was sat up for a lot longer due to sitting in the car for 2 hours, and sitting is a major crash trigger. so it really makes no sense.

 

[L'engle]

Did you keep taking the lion's mane? I hope you get more remissions, even if they are short-lived.

 

[xebex]

@L'engle yes, I stopped for a couple of days because it started triggering an immune response, so I took some antihistamine. I've started back on it now and while feeling a little bit better cognitively there seems to be no improvement in my physical stamina/resilience, or subsequent crashes. The really interesting thing is I just found the research paper on this forum about Herpesviridea autoimmune spectrum disorder and Lions mane is a part of his protocol.

 

[Jyoti]

@xebex, I find this very interesting. Obviously--any clue as to what makes a difference is compelling. I had a somewhat similar experience twice since I have been ill--about 9 years now.

First time around, I was charged by a very large young dog who was earnestly in pursuit of another dog and did not have the wits to swerve. I ended up with a shattered tibial plateau and was non-weight bearing for almost three months. In others words, basically in bed. I was mid-moderate at the time of the accident, and started noticing that I felt better than I had in years after about a month in bed. I chalked this up to my tendency to exceed my limits; at last I was obliged to rest and recover. But I did feel pretty good for about a month and a half, till my tibia was knit. Then, I figured, I was up and about again, and over-expending energy. I dropped back to moderate.

Last spring, I tripped and fell on my arm, broke my radius. There wasn't much fuss about it. I had a fracture and couldn't use it for work or play for six weeks, but other than being temporarily one-armed, there was no other change in my life. The first week was tough--a fair amount of pain--but the ensuing month was the best I have had since I got sick. I was very mild. It didn't last--once the arm was healed, I slipped back to moderate.

So while not exactly like your situation, it hints at the same kind of process. Something about a more urgent call upon the body's resources?

 

[xebex]

@Jyoti yes~ i remember reading about your experience! It must be that the trauma somehow wakes up the nervous/immune systems. But why the hell does it have to go back to sleep again?

 

[Jyoti]

In theory, one can make taking lion's mane or benedryl a regular thing, but not cervical biopsies or broken bones! Frustratingly close, but ... not the answer on its own.

 

[xebex]

i wish i could just take Benadryl and make it all go away! the nearest I've got is Ritalin but it's not really a good choice - it bums out fast and I cant tolerate higher doses. Don't take it anymore. Maybe over time the lions mane will pick up.

 

[vision blue]

How about a rush of endorphins? Cervical biopsies - oh wait - im assuming uterine cervical, maybe you meant other cervical...can be painful (and no fun even when theyre nor) so rush of relief when over with. Overlap with the whole runners high literature

I mention it because if its that , then you may benefit from LDN treatment since it messes with that whole system.

2500 steps as yiyr baseline is pretty damn good btw

So many of us have the immune system
Has sonething more pressing thing to so reaction (for ne was a sinus infection - both times) but would be very cool if in this case was endorphins.

Benadryl relief makes me think mast cells- any problems in that dept? Not familiar with lions mane but will look up along withHerpesviridea autoimmune spectrum disorder

 

[xebex]

Yes cervix biopsy.

It could be endorphin rush but I felt very calm rather than very energetic - Ive had a runners high back when I was fit and it was not like that, I do have some kind of histamine thing but antihistamines don’t work consistently - was never able to replicate that day on beneadryl.

I did have some success with LDN in that it helped clear brain fog but I actually got physically worse. I am thinking of trying it again though.

2500 doesn’t feel good to me, I have to lie down all day, and am housebound other than doc appointments. I am able to do self care and make meals if I don't stand up longer than 20minutes at a time (with 3hour rests i between) and I cannot sit up so it’s either lieing down or walking about. I’m sure lots of people would wish for 2500 steps but I can’t work and can’t socialize, am essentially confined to my sofa. Even doing that little amounts to 2500 steps. I haven’t seen my family for 2 years and Covid is making it unlikely to see them for atleast another year.

 

[L'engle]

I hope the biopsy is ok. Sounds like unneeded stress at the moment.

The lion's mane sounds kind of interesting, I might put that on my list of things to try.

I wonder if there's ways to trick the body into thinking it has something else to deal with, without actually having to go through injuries or other invasive processes. Not in a traditional 'cognitive behavioral therapy' way but somehow keeping the immune system guessing...

 

[vision blue]

Didnt mean to imply that 2500 steps meant you werent in a bad predicament. Sorry if it sounded like that.

How about a hormone effect?? I used to sometimes get a huge boost when i ovulated, sometimes in the earliest days i used to thinkn”hey maybe im finally getting better” )?

Need more data i guess. Long shot but Did they use a local anestetic?? Maybe sone absorption.

The feeling calm well being thing is i teresting. Rings a bell but cant quite place it. Will thinknabout it.

What happens when you sit up?

 

[vision blue]

@L'engle The really interesting thing is I just found the research paper on this forum about Herpesviridea autoimmune spectrum disorder and Lions mane is a part of his protocol.

Do you have link to the research paper on Herpesvirridae autoimmune spectrum disease? I googled ithis but didnt find anything with that phrase. Am definitely interested. Thanks.

 

[xebex]

Do you have link to the research paper on Herpesvirridae autoimmune spectrum disease? I googled ithis but didnt find anything with that phrase. Am definitely interested. Thanks.

It’s only been talked about here in this blog I think, lots of fascinating thoughts and ideas which ring true to me In Several ways. Was also some coincidence that I read about it just after a potentially positive experience with lions mane. https://forums.phoenixrising.me/thr...e-spectrum-disorder.83371/page-5#post-2336168

 

[xebex]

Didnt mean to imply that 2500 steps meant you werent in a bad predicament. Sorry if it sounded like that.

How about a hormone effect?? I used to sometimes get a huge boost when i ovulated, sometimes in the earliest days i used to thinkn”hey maybe im finally getting better” )?

Need more data i guess. Long shot but Did they use a local anestetic?? Maybe sone absorption.

The feeling calm well being thing is i teresting. Rings a bell but cant quite place it. Will thinknabout it.

What happens when you sit up?

Apology accepted

sitting or standing still causes orthostatic intolerance which I then crash from, being upright is my main crash trigger. Then the next day I can stand up for less time, at one point I could only stand for 2 minutes, before a sort of impending doom would fall upon me and the only way to get rid was to lie down for 6 hours, about 2 months ago I got up to 40mins and now maybe 20-30 Max. I can walk for longer than I can stand still, it causes a feeling of compression in my spine and a sense of the life and soul being sucked out of me. It used to cause pressure to build up in my eyes and pain the in Back of my head, I almost got checked out for spinal fluid leak but then it got abit better. So I didn’t get checked. I basically have a phobia of doctors after years of medical negligence so will make any excuse not to see them, i didn’t want the MRI with contrast and doc refuse to just try standard MRI (thanks doc) because I’m so sensitive to medications and supplements but I really don’t think I have a CSF leak as no headache. I have very mild low blood pressure and get POTs symptoms in a crash but I don’t have POTs if I pace well. It’s all very odd.

hormones totally dictate my Month I’m more active around ovulation yes and this remission was around that time. I will always crash hard no matter how well I pace around my period too.

I do believe it’s some kind of immune distraction going on, like Jyotis fascinating story posted above.

 

[xebex]

I hope the biopsy is ok. Sounds like unneeded stress at the moment.

The lion's mane sounds kind of interesting, I might put that on my list of things to try.

I wonder if there's ways to trick the body into thinking it has something else to deal with, without actually having to go through injuries or other invasive processes. Not in a traditional 'cognitive behavioral therapy' way but somehow keeping the immune system guessing...

I love the idea of tricking the body/immune system. I think it would figure it out over time and just revert back to baseline, I feel it does that when I try new supps like PQQ was super helpful for 2 weeks then nothing. I hear about medications pooping out on people and I think that’s why, the immune system figures out how to get round it.

 

[vision blue]

Oxytocin was the word was looking for. The sense of well being brings that to mind
Mds have done nothing for me either but i better not get off topic. Thanks for link on thread- will check it out.

I share your sensitivity to chemicals and meds. For me suspect ive had lifelong would have been mild MCAS or something very similar. I agreed to mri contrast once and regretted it because of lasting side effects ((at least one year)!and woukd never use it since. There are websites of people who have remained ill permsnantky from the gadolinimium. I wonder if you say you had it once “years ago” and are allergic/bad reaction if they could possibly disprove that- should you ever want an MRI.

Im sure youve tried the standard for orthostatic intolerwnce and didnt help or made worse

If you try looking at puppies for 20 minutes (the oxytocin thing) let us know how it goes...

I had started a thread on vagal nerve stimulation. I wonder if ykud get better or worse with that- coukd go either way. You coukd try something like humming when standing up- see if increases or decreases time to be upright.

Other thoughts are standard ones- what are nor epi levels etc