Severe brain symptoms and still declining

Wayne

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@WayneI never thought that I had a mental illness- in fact I know I dont- ......... I have seen it myself on my SPECT, all the hypoperfusion. Even my doctor said he's never seen that much so I guess it's understandable how severe my symptoms are.
@Aerose91, I admire your tenacity, and congratulate you on your "knowing" you do not have a mental illness. And your resistance to accepting others' suggestions that you do. I'm not even sure what the whole psychiatric profession considers a "mental" illness, but when there's an underlying organic brain dysfunction such as what your SPECT scans reveal, then I don't know why your symptoms wouldn't be considered primarily a physical disorder.

I had an aunt who had schizophrenia (and died at the early age of 40), so I'm always interested in anything having to do with this disorder and other "mental" disorders. Over the years, I've learned that in one particular study, various kinds of nutritional interventions allowed 90% of institutionalized schizophrenics to live independently on their own. My partner (a therapist) recently started working with a client who is schizophrenic. Turns out the "trigger" for his first schizophrenic episode was fasting (another hint at nutritional aspects). Without going into detail, I've also learned there's a variety of evidence indicating a pathogenic element and various gut issues as well.

Gut issues, nutritional status, immune system dysfunction, mitochondrial dysfunction, etc., all seem to be important and significant factors in most if not all brain/neurological disorders, including ME/CFS. I've come to believe unaddressed structural issues of many different kinds in the spine and skull can also play important roles. I rarely think these days in terms of "mental illness". I think more in terms of Central Nervous System dysfunction, Autonomic Nervous System dysfunction, and all the many elements that effect them, which combine to create such difficult health conditions.

BTW, I have a positive diagnosis for Lyme, including Bartonella, Ehrlichia, and Babesia. I feel fairly certain a big part of my cognitive issues are a result of this "brain disease", and anticipate that if I can somehow overcome these infections, I can overcome my cognitive difficulties as well.
 
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Aerose91

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Dissociation and psychotic episodes are not ME symptoms, and they are not part of the usual cognitive dysfunction that goes with ME. Please get properly assessed for them.

I would have to (respectfully of course) disagree with this statement. Before finding an ME doctor I was seen by countless others trying to diagnose me. I was even admitted to Yale for 4 days where the neurology dept. did countless tests on me. They couldn't figure out what I had so they sent me to psychiatry where they also did every possible test. Psychiatry also found nothing wrong with me. I've had every eval possible and the only thing that fits the bill is ME. When I was reviewing the results of my SPECT with the doctor (who was a psychiatrist) I asked him what he thought this was. His response; "mitochondrial disease"

Maybe things like dissociation are more common in our disease than we think, just people are too nervous to bring it up at fear of being told they are mentally ill. I know I have met several people on this board who share that symptom but have never really announced it. I have also heard lots of reports of Babesia and Lyme infections causing these very symptoms and worse. Those are not mental illnesses; those are physical, organic problems that once addressed will alleviate all mental symptoms.
 

Aerose91

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Although your case is more severe than mine i can highly relate to your story. The way you describe that your mind is sane but your brain ain't working is exactly how i experience it as well so thank you for mentioning it, now i have a better way to explain brain fog to "doctors".

Conventional neurologists have labeled me with ADD, anxiety syndrome etc. due to lack of organic / biomedical knowledge. Every single time they refer me to a psychiatrist who wants to put me on benzo's, SSRI's etc. but that stuff either completely sedates me, causes anxiety or in fact causes depression! It doesn't matter how hard i try to explain them i'm NOT depressed they simply don't listen.

My LLMD says i have chronic neurolyme that causes the fog, disassociation / DP etc. Sure i have chronic lyme, that's proven but is it really the cause of my cognitive problems? I'm more inclined to believe it's due to impaired blood flow and oxygen uptake. Every time i feel physically fit enough to work (very) hard on my cardiovascular system the cognitive impairment seems to lessen by 50% after a few weeks.

I tend to agree with you, think tank

It seems as though lack of blood flow/oxygen is at the root of all of our brain disorders. Is the basis for this mitochondrial dysfunction? Could be. And that I assume is caused by the underlying illness. I'm simply starting to wonder if for some people the disease can be centered more around the mitochondria in the brain vs the body. The pathology and cause is the same just the symptoms are different. I, too experience an increase in mental symptoms if I do any kind of activity. Physically it's a toss up if things will get worse or not but mentally? It always hits there first.
 

Hip

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@Aerose91
Have you looked into hyperbaric oxygen therapy (HBOT) as a means to repair the damage caused by encephalitis?

Here are some links on HBOT for encephalitis:

Rapid Recovery Hyperbarics : Introduction

Chickenpox Encephalitis, HBOT treatment. Part 1 of 2 - YouTube

Our Staff | Oxford Hyperbaric Oxygen Therapy Center


The trick is to find cheap HBOT. You need around 20 to 40 sessions, and some organizations charge very high prices, like $200 per session. In the UK, you find certain multiple sclerosis charities that provide HBOT, and have a much reduced rate of around £25 per session. Though I am not sure if non-MS patients are eligible.
 

Hip

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Dissociation and psychotic episodes are not ME symptoms, and they are not part of the usual cognitive dysfunction that goes with ME. Please get properly assessed for them.
Although that is true, research shows that many ME/CFS patients have comorbid psychiatric symptoms, so it is not uncommon for ME/CFS patients to have various other mental symptoms in addition to their ME/CFS. And assuming that ME/CFS is driven by an infection/inflammation of brain or nervous system, it is perhaps not surprising to find other mental symptoms arising in addition to ME/CFS.

I myself have several additional mental symptoms, including: ADHD, severe anhedonic depression, emotional flatness (blunted affect), severe anxiety with some psychosis (both now in remission thanks to these supplements).

It can actually be quite difficult to disentangle all the comorbid mental symptoms from the ME/CFS symptoms. It took me a while to do this, but now I am very clear on what is an ME/CFS symptom, and what is a comorbid symptom.


I should point out that I think that pretty much all mental symptoms, mental conditions, psychiatric symptoms, or whatever you want to call them, are most likely all caused by some sort of brain dysfunction, and many in cases, infection or inflammation of the brain. It may take some decades before science demonstrate this for certain, but my hunch is that all mental symptoms are a manifestation of a physical dysfunction of the brain. In this way, I do not get too concerned about the stigma of such mental symptoms, as I think these are just result from some brain dysfunction, and a dysfunction that you might be able to fix.
 
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Hip

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@Aerose91
In terms of hypoperfusion, the supplement vinpocetine (10 to 30 mg daily, must be taken with food) is known to increase cerebral blood flow and oxygenation of the brain.

So does:
Picamilon
Hydergine
Bacopa monniera
Piracetam
Gingko
Vitamin E
Vitamin B3
Acetyl-L-carnitine
 

Aerose91

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@Aerose91
Have you looked into hyperbaric oxygen therapy (HBOT) as a means to repair the damage caused by encephalitis?

Here are some links on HBOT for encephalitis:

Rapid Recovery Hyperbarics : Introduction

Chickenpox Encephalitis, HBOT treatment. Part 1 of 2 - YouTube

Our Staff | Oxford Hyperbaric Oxygen Therapy Center


The trick is to find cheap HBOT. You need around 20 to 40 sessions, and some organizations charge very high prices, like $200 per session. In the UK, you find certain multiple sclerosis charities that provide HBOT, and have a much reduced rate of around £25 per session. Though I am not sure if non-MS patients are eligible.
@Hip
You're definitely not the first one to suggest that, and I have in fact looked into it bit as soon as the price came up I stopped. I do have insurance but since I don't have a condition that is listed as treatable with a HBOT there is no coverage. I need to save what little money I have for my doctors and hopeful treatments.
 

Aerose91

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@Aerose91
In terms of hypoperfusion, the supplement vinpocetine (10 to 30 mg daily, must be taken with food) is known to increase cerebral blood flow and oxygenation of the brain.

So does:
Picamilon
Hydergine
Bacopa monniera
Piracetam
Gingko
Vitamin E
Vitamin B3
Acetyl-L-carnitine

Thanks, Hip! I'll look into these. Definitely not the first time I've heard of Ginko Biloba for this reason...
 

Hip

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@Aerose91

After you had the encephalitis, or even before, did you have any blood tests to determine which viruses or bacteria are active in your body? I know that the infectious cause of encephalitis is often not determined, but perhaps an ongoing active infection in your body might indicate which pathogen caused you encephalitis, and if there is any ongoing infection in your brain. Herpes simplex and measles virus are common causes of encephalitis. Other causes are detailed here.

I read that measles virus can lead to a form of chronic progressive encephalitis called subacute sclerosing panencephalitis (SSPE).
 

Aerose91

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@Hip

I had had blood tests for viruses done about 2 years prior and the only ones I had were HHV-6 and EBV, both past infections. For this reason I was given Valcyte for the M.E. but to no avail. All of my titres are still about the same as they were before so no indication that anything got reactivated. Wish I had had that lumbar puncture right away....
 

Aerose91

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I am just wondering if you might have ongoing herpes simplex infection in the brain. That's treatable if you do.

Also: the megadose omega 3 brain damage repair protocol in this thread may be of interest.
I've always tested negative for hsv 1 and hsv 2. Blood and saliva tests.

I've actually read some info about healing TBIs with fish oil mega doses. It's very intriguing, thank you for the link.
 

justy

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What an interesting, and distressing discussion. Let me see if I can put some of my thoughts into words about what I have read here.

Aerose - so sorry to hear of the horrendous time you are having. I have t disrespectfully disagree with Calathea about the mental illness aspect. I do believe that derealisation, DP and many of the other symptoms mentioned by Aerose and others CAN be symptoms of M.E.

I have never resonated with the term 'brain fog' and never used it to describe my symptoms. What I feel is closer to dementia and derealisation. I luckily haven't had too much DP, but some.

I have feelings of living in a dream - everything around me seems a bit off and strange, light sensitivity is also part of this, with PEM I get severe feelings like I have just come in from a sunny outside into a dark room - ican only describe it as shadows and a grey veil.

I do feel attached to my family and children, but not so much to myself. I find it hard to imagine who I really am a ttimes and trying to connect the me of now with the younger 'normal' me seems impossible. I watch people around me living 'normal' lives, doing things like working and going out alone etc and I actually cant seem to work out how this can be done and how I could ever do this. I KNOW I used to do this, but cant seem to join up the old me with the new me.

I have experienced very severe anxiety and as a result of all of this have developed a weird kind of reactive agoraphobia. even so I reject the notion that I am suffering from mental illness. Even my regular GP can up with the oxymoron of reactive agoraphobia, as nothing else fits my case.

My functioning is not so bad these days - still mainly housebound and using a wheelchair for longer trips out and mainly to avoid PEM. I find the brain symptoms pretty bad. I am not intellectually affected - I am able to study, although it causes severe PEM, but I feel often as though my brain is inflamed.

strangely I can actually 'feel' my brain, or so it seems. I also keep experiencing brain sensations where my brain feels as though it 'moves' inside my head and I feel very spaced out and more unreal when this happens. At the same time I have times of feeling immensely vacant in my brain and then can get a type of myoclonus - arms or torso flinging out or large jerks. I am conscious throughout this and can speak if spoken to or even get up and move around - which seems to stop it from happening.

I mentioned the brain 'moving' issue with feeling vacant to an M.E specialist and they had NO IDEA what I was talking about. I also have a headache most of the time.

Aerose - the time you talk about suffering the severe anxiety for two years I can very much relate to - I was shocked to read of someone else having this kind of experience, which for me can only be described as a literal living hell. I was given an SSRI at the beginning of my severe relapse in 2009. After just one dose I was so confused I spent the whole afternoon standing in the middle of the room, trying to work something out... I don't even know what. The GP convinced me to take another dose, after which I started to suffer from the most extreme agitation I have ever experienced or seen in anyone. I also suffered extreme suicidal ideation.

I didn't take another dose and the GP said the drug would be out of my system and I would be fine within 24 hours - it took two years for the agitation and extreme anxiety to subside. During this time I lost an enormous amount of weight and worsened my M.E by never being able to really relax. My goal at one point was just to be able to feel relaxed enough to eat a meal with my family.

I was hysterical and crying a lot of this time as I was being tortured so much. I was afraid to be alone. afraid to be with people. My GP was not interested in this reaction or in helping me - he gave me benzos, which I was too afraid to take because for a fear of withdrawal syndrome.

Sorry for such long post. I do believe using the term dementia is fine. That is how I feel at times. My husband keeps telling me 'why did you do that' or 'why do you keep putting that there' and I have no idea what he is talking about. I have lost whole chunks of my life and have very limited ability nowadays to accurately reflect lengths of time. In my mind anything in the past 2 years is recent. anything from the past few months will be 'this week or last week'. My family just laugh at me, but it is a worry.

Last thought - I have posted about this elsewhere but have had a distressing experience of waking at night and not knowing where, who or what I am. I mean actually not knowing what a human is - what the earth is or what being 'sentient' and alive means. I am completely awake when this happens - not half asleep as in sleep arousal disorder. I recall it happening the next day.

Brian well and truly hurting now... gotta go. Hoping to get tested for Lyme properly soon.
 

Wayne

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strangely I can actually 'feel' my brain, or so it seems.
Hi Justy, thanks so much for sharing your "interesting, yet distressing" experiences. Everybody's input here has given me more awareness of things my brain experiences, but have never taken the time to put into words.

Just one example, it's becoming more and more of a problem for me to think. For me, thinking is painful, "or so it seems". It takes so much effort for me to think, and I've come to believe it's at least partly because my neurological system can't coordinate/communicate between my gut and my brain (both have huge numbers of neurotransmitters).

I've heard the gut referred to as the second brain, and has MORE neurotransmitters than the brain. So it only makes sense to me they communicate with each other, and when they can't do so efficiently, it leads to a degree of turmoil (and for me, an element of non-physical vertigo). Though not painful in the physical sense of the word, it's painful nonetheless.

Thanks again to everybody who've shared their experiences. Anything that's shared that can help me get perspective on my cognitive difficulties is very much appreciated.

Wayne
 
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justy

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I think its good to have some open discussions about our experiences. Some of these things can be very hard to describe to another person, so trying to share these thoughts here can be a real help, especially when someone else says - yes I get that (but maybe they have always called it something else)

I was thinking this afternoon of another thread, and good discussion with Marco re sensory gating issues - which could explain some of the other weird things my brain seems to do, such as thinking objects are moving when they are not or most annoyingly 'seeing' the world bouncing up and down as I walk - which is very disconcerting.

All the best
Justy
 

Aerose91

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@justy

Thank you for adding your piece to the discussion, I'm glad we could open a bit of a forum for those of us who are dealing with these type dysfunctions. I can also relate to every single thing you have mentioned.

I'm starting to believe, based on my own symptoms as well as those of others who have spoken here, that extremely severe mental dysfunction is a more common part of M.E. than may be recognised or acknowledged. So much so that even fellow M.E. sufferers accuse us of being mentally ill. I would hope that some day this part of the disease will be recognised because, for me, this is by far the worst.
 

taniaaust1

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I have a doctor now who wants to get me on IV lipid replacement.
If the issue is being caused by low blood volume in your head, that may be a good idea thou there are other things which can boost blood volume too eg taking more salt,fluids and a drug such as florinef. (I'd be surprised by a dr going the IV saline route first).
 

Daffodil

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my brain symptoms were so severe for decades, I almost took my life several times. nothing helped it and it was a 24 hour agony and torment. to this day, I have no idea whatsoever how I lived through it.

the first thing that helped was antiretrovirals. then, GcMAF helped a little. now, antibiotics are helping a lot.

my advice is to find a way to see dr. Kenny demeirleir, either in Reno or in Belgium. I have seen many CFS specialists and he is the best.

hang on...it can get better.
 

Aerose91

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If the issue is being caused by low blood volume in your head, that may be a good idea thou there are other things which can boost blood volume too eg taking more salt,fluids and a drug such as florinef. (I'd be surprised by a dr going the IV saline route first).
I tend to think it isn't just a low blood volume problem because it doesn't change at all based on my postion. Really, the problems with my brain IS my disease. If the problem is mitochondria damage in your brain wouldn't lipids be a potential solution?