Psychosis?

[taniaaust1]

I simply don't know what to do anymore. I've only been sick for 8 months and I've declined this far already. If I were to recover 80% I would be in absolute misery- the darkness and vacancy in my brain is that bad. I'm 29, how am I supposed to live the rest of my life like this?

That sounds like depression talking. What makes you think that if you recovered to 80% that your brain wouldnt recover some as well? Usually when someone is recovering from this illness, usually their other symptoms improve some too. It is possible to have depression and not be able to feel anything.

I understand about the disconnecting from reality and that... I was under so much stress with my ME at one point as things were sooo bad that I started disconnecting from reality. Feeling like I was loosing myself and knowing I wouldnt feel a thing if I did and then no longer care at all (as Ive been there before) was scary. (Im not suggesting that you have disconnected as a self preservation thing to the stress of your illness getting worst but its something to consider).

I also know what it is like to dissociate and loose reality due to low blood to the head. I once lost reality to the point not only was I not feeling like I was in this reality no more that I started acting nuts just cause I felt invincible and like I could do anything at all.. it didnt matter as the world didnt seem real (as this reality no longer meant anything to me to act normal thou I was out in public at the time.. I was so out of reality that I tried to wanted to have sex and started to touch my boyfriend in public as I was soo high)..

my vision went all weird too.. like the whole world expended and grew.. colours changed too and went brighter, vivid.. I went out of reality and like on an extreme drug high.... then I went to stand, took one step and passed immediately out on the floor (all this had happened due to lack of blood flow to my brain. I knew I needed to lay down the whole time but couldnt as there was nowhere in this this building I could lay).

I came back to reality and came too and my body was jerking and seizure like and a crowd of people were around me (a short time later the ambulance rocked up who fortunately understood POTS and was able to carry me out to a car to be taken home).

Anyway.. lack of blood flow to the brain can do very bad things to our bodies and minds!! even if we are too wacked out due to it to care. Fortunately I havent had an attack of POTS like that right before a pass out again. (the most dramatic symptom I now often get before a passout is going blind).

I suggest due to your lack of blood getting to the brain.. to try Florinef to boost your blood volume (even if you dont have POTS)... maybe it would help you get more blood more to your brain.

 

[stridor]

@Aerose91
Listening to your description takes me back to 2011/2012.
I have picked up a bit of a gastro bug and it is messing with my protocol as I can't differentiate between needing more supports and flu symptoms. But generally, I have been doing better.

I shared your plight and rightly or wrongly, I attribute that time in my life to a combination of metal detox symptoms as I was in the thick of mercury detoxing......and as well methyl block. The vitamin (for chelation) that I was taking back then had lots of methylfolate and only 100 mcg of cyanocobalamin. What sadist would invent a vitamin like that?

Anyway, I'm not suggesting that my experience has any relevance for you - I'm just saying don't give up your search for what is driving the expression of your ME. Mine was mercury, yours could be Lyme or mold....

Beware of anything like NAC or glutathione that can produce symptoms of methyl block (plus drag mercury around). FWIW, I have been sick most of my life (first mental, then physical). We didn't have the internet or access to genetic testing when I was 29.
You have the potential to unravel your health problems decades before some of us. Keep up the good fight brad

 

[stridor]

@taniaaust1 @Aerose91
"I also know what it is like to dissociate and loose reality due to low blood to the head."

This is a good point that I could have included. I was so sick and was told not to return to work and was very discouraged. Exercise intolerance, depression, brain-fog and the inability to stand had ruined my life. I faked the symptoms of MS and got tested for it. It turned out that I have CCSVI.
Chronic Cerebral Spinal Insufficiency is something that no one talks about here but it is a condition that probably most of us share.

The treatments are either to have the neck reamed out in a $10,000 operation or to increase mitochondrial function in the heart so that the tricuspid valve gets back to work. At least that is the theory.
IMHO - mitochondrial failure of this magnitude needs direct intervention and by this I mean Freddd's protocol.

Doing this, I have been able to return to my workshop and can stand for 4+ hours a day now....this increased fairly rapidly and now I need to do some incremental exercise to tell my cells to increase the numbers of mitochondria as I seem to be plateau'd.

Brain-fog has dropped and memory is improving but we need to realize that all improvements have occurred with mercury chelation running in the background. When I finish I will not be able to clearly identify a single approach that fixed CFS/ME. brad

 

[Aerose91]

Thanks for all the replies, guys.

@maverick

Thanks for that support, bro. I also feel like there's no way I am on this planet to be like this- I have so much I want to do and loved life so much. I would need 10 lifetimes to do everything I want to do! So it's extra hard to squeeze any of it into one sick one. Some days I wake up and am just totally in disbelief at how bad this has gotten.

@taniaaust1

Wow that's a crazy story. How are you doing these days? Question tho- if it's solely blood flow to the brain than wouldn't things get better if I'm laying down? For me it never changes or fluctuates- ever. Just slowly declines.

And am I depressed? Hell yes. But it's situational- if I wasnt sick I would be happy as a clam as I have been my whole life. The depression also gets worse when I crash- quite a bit actually. My doc also put me on 10mg Prozac but it didn't do anything except help my memory a bit actually. I'm super sensitive to medications, too, so I'm not upping the dose ortrying anything else.

@stridor

I'm glad to hear you are doing a lot better! It's unfortunately one of those diseases that we have to figure out ourselves vs total reliance on a doctor. I am warming up pretty hard to the mitochondria damage theory but I wonder how it happens. Both of my PEM setbacks that made my brain REALLY bad happened instantaneously. In a matter of seconds I could literally feel huge parts of my brain just "disappear" , never to have returned...... yet.

One thing I will say is that every doctor who has looked at me agrees that I have brain inflammation. That definitely started from the encephalitis but seems to remain and be getting worse with this disease progression. Does brain inflammation cause reduced blood flow? Or can the inflammation damage the mitochondria? I'm trying to find a coordination. Either way though, I know inflammation and your brain don't mix and since I'm on a complete anti-inflammatory protocol there has to be some other factors causing it because without that I should be improving.

I appreciate the support though guys, really

 

[Aerose91]

@Aerose91

Don't forget the possibility of a pathogen such as Borrelia or Bartonella. Many of your symptoms are classic for them, especially Bartonella.

Best,
Sushi

@Sushi-

I believe I read somewhere that Lyme Doesn't carry the severe PEM symptoms that ME does. PEM setbacks has been by far the most devastating to my brain and my condition. Does PEM like this exist with Bartonella and Borrelia?

 

[Sushi]

@Sushi-

I believe I read somewhere that Lyme Doesn't carry the severe PEM symptoms that ME does. PEM setbacks has been by far the most devastating to my brain and my condition. Does PEM like this exist with Bartonella and Borrelia?

There are a whole range of symptoms and it seems to vary who gets what, but yes, some get PEM. Not saying it is Borrelia or Bart, but it is good to check since many of your symptoms go with Borrelia and its co-infections.

Sushi

 

[taniaaust1]

@taniaaust1

Wow that's a crazy story. How are you doing these days? Question tho- if it's solely blood flow to the brain than wouldn't things get better if I'm laying down? For me it never changes or fluctuates- ever. Just slowly declines.

For myself yes it does majorly improve if laying down.. thou a bad low blood to brain incident I find can trigger off my ME after it.. in the delayed ME manner (I guess due to the strain the POTS and lack of blood to my head put on my body) and hence can then bring in other ME symptoms later due to a bit of a ME crash.

But I was thinking if you have extremely low blood volume, for some there is no repreeve even when laying down. There are some very bad POTS patients who get symptoms from it all the time and even can be being affected while not standing and sitting. My blood volume was so bad at one stage that I was having to sleep with my head and part of my upper body, danging from the bed as I needed them lower then the rest of me.

How Im doing these days.. well far better brain wise and good mood wise (not suffering from anxiety or depression.. I only get anxious if Ive been upright too long and need to lay due to the excessive noradrenaline my body does in response to being upright) .. but POTS and ME wise, Im not going good at all (I just got a wheelchair from the disability service which allows me to sit in it with legs raised.. just sitting with my legs down is an issue for me). Today I have viral reactivation going on again.. cough, sore itchy throat... commonly happens when Ive overdone things.