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Is it normal to get worse daily?

Aerose91

Senior Member
Messages
1,401
The first 3 months or so I was relatively stable. Then I over exerted one time which led to a huge dos slide in symptoms and, since that day, I continue to decline every.single.day. By decline I mean my brain. Physically if I overdo it it will recover for the most part after a week or so, but regardless if I'm exerting or laying down all day (which I've been doing for months now), when i wake up in the morning more of my brain is down. By down I mean more emptiness, more dissociation, less sense of the present and more anhedonia. No matter what I do I see noticeable changes downward every day, regardless of how much I rest.

Is this just disease progression? I'm 8 months in, can ME do this in the beginning?
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Aerose I can´t answer these questions however once I screened the yasko forums for people with similar issues to me (anhedonia, dissociation/derealization etc) and found one guy that cured after there years doing gut, methylation etc. He does not have what you have and neither exactly what I have, however he was quite screwed and he came out of it. It is possible. I quote here:

3 years : 1st positive post
by Feanor » Sun Feb 28, 2010 4:00 pm

Hi everyone, this is a long due, first positive post
icon_smile.gif

It's been 3 years since i started to follow Dr Amy's guidelines.
I had very positive throught those years, however it’s the first time I go through the whole process of writing a positive post.
I've give up on writing the "perfect" positive Dr Amy deserves and that i postponed for several years.
I can’t thank enough for the whole protocol of Dr Amy.

History
When I was young, I had only a discret version of Asperger syndrome, mostly difficulties to establish relationship (except with a few people).
Talking was excellent (except during high stress situations), and academically I had much ease.
I have schizophrenia. I almost can say I had schizophrenia, however residual aspect have reemerged with the daily stress.
I was not diagnosed, however it's plainly obvious for me now.
Schizophrenia came gradually from my 16’s, and then suddenly in 2003 after some major stress and a dtp vaccine.
Some paranoia, but mostly delusions (seeing anythings as a part of a big plan). After the DTP shot, tremendous motor/langage difficulty. I could spend hours doing nothing, or doing barely nothing in a video game.
The harder was the almost full loss of my logical thinking, which back then was like going through a rope bridge, swinging around, going really slow just to elaborate a rightful sentence.
Reading, saying meaningful sentences became hugely hard.
The way all of this set up in my youth, I thought at first getting back my previous life was impossible.
I could spend a day to read a page on a book, no matter it was a TV program or the book of Dr Deth.

To sum up, i've been completely disorganised for several years, a real mess.
By that time i tried to grab informations about vitamins that could help me.
Healing
At first I tried to grab information about vitamins here and there, to help me finish the master I was doing (a year of cognitive science after 4 years of computer science).
This forum was the first where i saw a comprehensive view of how various pathways tie together, and i've been charmed by how beautiful and subtile the approach and the whole theory were.
I needed some time to get into the philosophy.
I remember the genetic test results have been at first a schock, and slowly the pieces tied better together, as my reactions to random vitamins before.
The best improvements I had are with anything that tie to the gut, anti-microbial, B12 of course as can be deduced by my genetics.
I also have impressive results with NADH/niacinamide, other energy related compound, and again gut support for motor difficulties.
Now it seems like those years from 2003 were all a strange and long dream, not really a nightmare as things have seemed unreal, fake, like a very slow paced movie, spotted with scarce "high"-experience time during which i could "live" each note of a music or scenery.
The recall of my Childhood was such a different perception that I even doubted it ever existed several times.
My worries were not to see the remaining of my essence not to be completely dissolved.

The fact that i now worry about how to be daily in adequacy with the world is indeed a positive.
There have been many positives, and all supplements I kept for several months made a difference.
If I have to select a few memories, my first strong impression have been with MB12 shots in 2007, backed up by other step 1&2 supplements.
There is a movie, called “Equilibrium”, where people in are almost all "drugged" to supress their emotions and make a "peaceful" world.
I remember a scene where the main character awakes after he weaned of the med.
He see a window, with rain on it, it is the same window he see everyday, however the
delicate shapes of rain running over the translucent glass, the sunset color that give a lovely glow to the overall, now made him cry.
I had this kind of experience, as my perception of 3D, whole feeling in response of scenery were back.
Yet all the sensory informations were just the same.
I hope I’ll be able to translate the journey of those dark years into something useful for others.
Back to life

The impulse for completing the post is an excellent news : I started in september 2009 a master of biology - i'm back to "school" at 26
icon_biggrin.gif

I choosed mainly molecular and cellular biology courses, with a special focus on neurobiology, pharmacology and immunity.
Yes, this is not the fastest way to pay forward
icon_biggrin.gif

This is all thanks to you Dr. Amy and members of this forum.

The degree is very selective, only about 25 from ~65 students will go in the 2nd year of the master.

The master is composed of 6 month of internship each year.
I’m still very slow so I need more time that would another student to do things and learn. I do about 42H of work per week.
It’s a miracle I can handle so much work, information overload, with minimal trouble.
Yet I even found time to go to swimming pool...
I always loved swimming, I’m really glad I found time and the energy to do it.
I receive a small fee monthly for the internship, with which I will do testing. A CSA and UEE is on its way, and I’ll try to do more testing, more often.

Overall, autism is still there, specially since I cut back methyl, even if I now see clearly when there is a communication discordance between me and people. It’s very frustrating seeing the problems and not being able to solve it in real time, for example finding the good words to express ideas without hurting people feelings, while not losing focus on the work I have to do daily.
I've been down a long road, but this is only the start of the path, thank you Dr Amy for having provided us enough tools and guidance to go forward.
It's actually a relief as i write it down : no matter what happen for the master, my life have already been saved.
It’s not just a hope, it’s a fact I can build on.
BTW I do not actually support the Yasko approach as it is expensive as hell, but treating the gut, methylation etc are very good candidates to regain health. Those have a LOT to do with the immune system and chronic infections, which for some are important to treat directly as well.
 
Last edited:

Aerose91

Senior Member
Messages
1,401
Beyond

Thanks for sharing that. It's pretty damn crazy how bad things are in my brain. It's kind of like this guy said- for me now it's no longer just dissociation- it's a complete loss of my being able to feel existence as a whole. "Reality" and "life" are mere concepts to me now.

I've been doing methylation slowly and wonderful diet/healing the gut for a couple years now, long before I got ME, to treat adrenal fatigue. That's part of what's giving me such trouble with this- all of the stuff people are supposed to do to heal from this I've already been doing for years, yet I continue to decline daily. Just hoping something will turn around soon.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Yeah that sounds bad, I won´t say otherwise. I have my dissociation etc symptoms but they are more like a fog, slight. The cause must lay elsewhere for you then. Sometimes we need to recognize our problems overcame us and we need a professional. Too bad most of doctors are awful and traumatic. Probably if you had enough tests something would come up to blame at least part of your feelings.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
when I first got ill I was overexerting (not for a healthy person, but due to keeping on with life activities instead of resting).

After some months I did experience a profound fog where i didn't really think and felt lost. That lasted many months but I was able to rest a lot. I had no diagnosis at that time. After I while it did improve and I became relapsing/remitting for some years.

Only now am I progressive, but I had no diagnosis and little/no treatment for many years. Also I overexterted due to life circumstances (and not knowing better).
 

Aerose91

Senior Member
Messages
1,401
I do work with a therapist just because this is a hard time- but all of these symptoms I have came after overexertion so I know their not psychological. Each time I've over exerted my dissociation/loss of connection to reality becomes worse and appears to be permenant at this time. It doesn't matter how much I rest it need seems to help even 1%.

Willow- you say your progressive now in that your getting better?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
It it's due to ME I doubt if it would be permanent even if it feels like it right now. One can recover from extremely aweful places with this illness.

Consider if you could of developed coexisting depression to cause these more recent symptoms since the crash.. also things like coexisting POTS too can cause some dissociation or feeling out of it in some if brain isnt getting a good blood flow. Also consider if its any of your supplements or meds having a negative effect (when we crash and are at a lower level, things which previously may not have been negativity affecting can start to do so).

You could of also developed issues to mold or something like that.

Unfortunately if you have a lower baseline with that crash.. often new symptoms do enter the picture. ME can do all kinds of things even at the beginning of it... over time it often does change and shift. Its hard to say seeing you've only had ME/CFS for the time you've had, how its going to be like for you. I guess thou you know now just how important it is to avoid crashes.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
Willow- you say your progressive now in that your getting better?

sorry for being unclear. progressive means getting worse over time (rather than relapsing/remitting, as many patients are, which would be better then worse, repeat, but not necessarily with a clear trend over time.... in a few patients the trend is to do better; patients can change between groups--I have even heard of people who were progressive and then move to other groups).
 

Aerose91

Senior Member
Messages
1,401
Dp
sorry for being unclear. progressive means getting worse over time (rather than relapsing/remitting, as many patients are, which would be better then worse, repeat, but not necessarily with a clear trend over time.... in a few patients the trend is to do better; patients can change between groups--I have even heard of people who were progressive and then move to other groups).

Do you have any ideas what may have started your downward progression?