Severe brain symptoms and still declining

Aerose91

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The references to brain dysfunctions throughout this old thread didn’t really address the issue as to whether or nor PEM followed their symptom flairs, i.e. this
truly being a marker of MECFS?

I for one would be interested in learning of the brain dysfunction-PEM dynamics. IOW, what illnesses) are we talking about in the several cases referenced in the
multiple posts?
Overexertion seems to only target my brain. It barely effects me physically at all
 

Wayne

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Have you undertaken treatment yet?
I never did antibiotics, but have tried a number of other non-drug therapies. I think what has the best chance of me making a significant shift for the better is to get an at-home mHBOT unit, and do it every day. It's the cost that's currently holding me back.​
 

Aerose91

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I never did antibiotics, but have tried a number of other non-drug therapies. I think what has the best chance of me making a significant shift for the better is to get an at-home mHBOT unit, and do it every day. It's the cost that's currently holding me back.​
Have you ever undertaken Stephen Buhner's protocols? He's a wealth of information and all his herbs are readily available.
My current doc has a HBOT in his office but i, too, can't afford the sessions. Very curious to try, though
 

stridor

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The references to brain dysfunctions throughout this old thread didn’t really address the issue as to whether or nor PEM followed their symptom flairs, i.e. this
truly being a marker of MECFS?

I for one would be interested in learning of the brain dysfunction-PEM dynamics. IOW, what illnesses) are we talking about in the several cases referenced in the
multiple posts?
The symptoms were present continuously but worsened in times of PEM. So for me, the symptoms "followed" (if that is the term we are using) PEM and not vice versa.
 

Aerose91

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The references to brain dysfunctions throughout this old thread didn’t really address the issue as to whether or nor PEM followed their symptom flairs, i.e. this
truly being a marker of MECFS?

I for one would be interested in learning of the brain dysfunction-PEM dynamics. IOW, what illnesses) are we talking about in the several cases referenced in the
multiple posts?
When i overexert my brain is the only thing effected. If it's bad enough, the defecit will be permanent. It seems like the minor physical symptoms i have will improve if i do the right things but nothing touches my brain.
 

Aerose91

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The symptoms were present continuously but worsened in times of PEM. So for me, the symptoms "followed" (if that is the term we are using) PEM and not vice versa.
@stridor It's amazing that you were able to alleviate the mental dysfunctions with this disease. I always get nervous asking this question but how is your overall health? Have you made a substantial recovery?
 

Stretched

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When i overexert my brain is the only thing effected. If it's bad enough, the defecit will be permanent. It seems like the minor physical symptoms i have will improve if i do the right things but nothing touches my brain.
Have you tried Methyl Prednisolone? It completely alleviates PEM for me. It''s an rx but available through usual online pharmacy sources (listed on this
forum; use search function).
 

Tella

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Firstly, I apologize if this is slightly long but I may need to write a bit to get my point across.

From the immediate onset of this disease for me mental symptoms were 500x worse than physical ones, and even though I have declined physically I have declined much more mentally.

Comparing "brain fog" to what I am dealing with is like comparing t-ball to major league baseball. Sure, I have brain fog but it's just the tip of the spear.

I'll do my best to explain it- From the immediate onset of this I became very, very dissociated. Classic depersonalization. Since I had encephalitis my doctor said this wasn't uncommon and it should subside with time. However, it has never gotten better and only increased as time has gone on as well as any time I have over exerted. In fact, the first few times i had post exertional setbacks they only impacted my brain, making this situation worse and not my physical condition at all.

It goes much beyond this, though. It feels as if my connection to the world is fading into a darkness, where everything is becoming dimmer and dimmer. Visually it looks as if I have just come inside after being in very bright sunlight- before your eyes adjust and everything is so dark and dim. At its absolute best everything has a bit of a faint yellow hugh, as if in a dark room that is just lit with one flickering candle.

It feels as if my brain is plunging deeper and deeper into nothingness to the point where this week it's like I'm living in near total darkness. Its not a visual thing, though, I still have bright light sensitivity but its the way my brain perceives the world around me. It's as if I'm hundreds of feet under water, struggling to swim back to the top toward the light but I keep getting dragged further down. My thoughts are extremely faint and few, sensations are almost non-existent, and my general cognition is on an all time low. It's like my mind is on the verge of dissappearing. Things I did mere hours ago feel like a distant childhood memory and ask me to remember anything I did beyond this morning? Not a chance. The entire last year that I've had my illness is just black and there is zero connection to my life prior. Is this experience common to those who have brain fog? I mean, i hear people say things like they can't recognize familiar places or people. My cognition is generally still good in that regard, its just that my experience of the outside world and my own thoughts is extremely faint. My logic is still in tact but sometimes I start to dip into psychosis and then it becomes impossible to convince my brain of what is really going on. Even posting this feels like i'm a place far, far away and at any moment the tunnel may close.

Aside from the difficulty of living like this and all of the physical symptoms the most disturbing part is that this never fluctuates at all- never changes or gives me any indication of lessening even 1% My physical symptoms will fluctuate and change day to day but the condition of my brain does not. Regardless of sleep, headaches, nutrition or general mood it is the same 24/7/365.

I have expressed this concern to my doctor (who is a world renound ME doctor) several times and he just nods his head and says "yes, brain fog, very common in this disease" I try to tell him this MUCH more than brain fog but I don't get anywhere. I have even seen two other doctors because of this and no one seems to have a clue. I have had all the tests done- MRIs, thyroid, adrenals, hormones, O2 levels, SPECT. Out of all of them nothing showed anything except my SPECT showing hypoperfusion over the entire length of both sides of my cerebral cortex but my doctors still say they don't understand what accounts for this. One doctor tried putting me on Prozac to blame it on depression and yeah, I felt a little less depressed but it did nothing to address this. I don't even feel that I could be depressed because I'm much too far from reality and the real world to be able to feel depression.

I am still pursuing an accurate Lyme test and possibly sleep apnea even though I don't have any of the classic symptoms.

If you're still reading at this point I thank you. I just don't know what to do anymore as it seems nothing has any positive effect. I'm honestly not interested in trying a plethora of supplements or medications because I am so sensitive to everything. I would much rather figure out the root cause of this.

For the past year I have pretty much learned to grin and bear it and adjust to this. However, recently I've been plunging further into this darkness and it's becoming quite concerning again. Does this sound like something common of an M.E. sufferer?
Hey how are u now buddy?
 

Aerose91

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Hey how are u now buddy?
Hey. Thanks for reaching out.

Unfortunately the same. However I've found out a lot since then. I tested positive for bartonella and babesia though treatment for both didnt help. I did see stabilization when I moved to the desert so that gave me the indication that toxins and mold were a problem and I'm still of that belief. I know ly gut is in bad shape so I'm working with a new practitioner to help leaky gut and address biotoxins. Hopefully this is the last piece of the puzzle. I hope you're not dealing with the same issues...
 

Tella

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Hey. Thanks for reaching out.

Unfortunately the same. However I've found out a lot since then. I tested positive for bartonella and babesia though treatment for both didnt help. I did see stabilization when I moved to the desert so that gave me the indication that toxins and mold were a problem and I'm still of that belief. I know ly gut is in bad shape so I'm working with a new practitioner to help leaky gut and address biotoxins. Hopefully this is the last piece of the puzzle. I hope you're not dealing with the same issues...
I’m glad.
I’m severe and can sometimes feel same heaviness u describe. Have u tested b12 levels? I’ve learnt about pernicious anemia and it blew my mind. I get the shots now. They’re recomeneddd even if u don’t have PA. Also DNRS helped a bit. Still doing it. Diet change always good but need to stay on it. Hope it helps
 

Aerose91

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I also do DNRS. It seems like a slow process but I stick with it. Diet seems crucial for us. I've had b12 tested several times and taken it for years. Methylation and all that never did anything for me