Dementia in ME/CFS

[Marylib]

For Dipic

No need to despair.

Alot of us have cognitive problems, but it is not always permanent or progressive. Mine has lifted completely at the oddest times. And for a little extra brain blood flow, you can use methylphenidate or adderral.

Hang in there.

xoxo
Marylib

 

[Wayne]

Dementia Definitions

From Wikipedia

Dementia (meaning "deprived of mind") is a serious cognitive disorder. It may be static, the result of a unique global brain injury or progressive, resulting in long-term decline in cognitive function due to damage or disease in the body beyond what might be expected from normal aging.

From MedlinePlus

Most types of dementia are nonreversible (degenerative).

Hi Dipic, Hi All,

My own CFS dementia has also been extremely difficult at various times. I would agree with others that we don't necessarily have "progressive" dementia, but I've always felt my own cognitive difficulties reflected the very definition of dementia. I checked out a couple sources (above) regarding dementia, and it doesn't seem to indicate that it has to be progressive to be considered dementia.

Some of the things that have helped me the most over the years: 1) digestive enzymes; 2) amalgam removal; 3) metal crown removal; 4) MMS; 5) low-dose hydrocortisone; 6) Atlas Profilax; 7) methylation supps; and

8) Most recently (last week), I've started supplementing with SAM-e and have found it to be very helpful. I've had noticeable and sometimes significant improvements in my cognitive function, strength and overall energy. I'll likely start a separate thread on SAM-e in the near future. At least one of the things it seems to be doing is supporting my methylation cycle.

Wayne

 

[thefreeprisoner]

My experience



Blimey, dipic, your situation sounds awful. I'm really sorry to hear about what you're going through.

About the IQ thing, I'm intrigued to see how many people with ME have high or very high IQs. An old schoolfriend of mine has an IQ of 178 and she got ME at around the same age I did.

My IQ was first measured by a child psychologist and came out at 145. I took an IQ test just recently (although it was a different one, which could explain the points difference) and it came out at 111.
No wonder I feel like I've got brain fog.

I might actually try again with a different test because I'd like to find one that's as close as possible to the original, which this one wasn't (or maybe that's just a vain hope).

I had a slightly scary moment when I went into hospital and the nurse stuck a thingummy in my arm. I said to her "What's that" and she said "Oh it's a canula." I had to ask her to repeat it and then repeated it myself, as I know that's how I learn words best - "Right, a canula."

Then about an hour later I tried to refer to it and said, oh, what's this thing again? "A canula" said a different nurse. Right, I said ,"My canula hurts."

Then the next day another nurse came along and I was trying desperately to remember the name of this thing in my arm. "What's this thing?" I said. "A canula," she said. Oh right, yeah.... "Can you take out my canula please?"

Then a few days later I was trying to tell friends about it and forgot the name again. ARGGHHH! I never used to be like this...
Mind you, some days are better than others, which gives me hope.

Rachel xx

 

[brenda]

Yeah I've had the brain fog for a long time and it got worse at certain points like after a pesticide exposure but the thing that is getting me is Lyme dementia which I did not know I had until I came here, then I saw that it had been coming on for a year or so. This is not the same as the fog.

With the dementia, my confusion has gone through the roof, I can no longer read much - and I used to be an avid reader, some days I get the day wrong and I mean wrong for a whole day and once I had it wrong for 2 days, and nearly went to the local market and only stopped because of the weather. Later I saw the day was wrong. I sometimes recall a conversation or a post and am not sure if it made any sense as I am not sure at that point if anything I said was true or not, and when I wake up I have trouble 'getting out of my dreams' and words are often lost on me. This has become scary.

As my body is giving signs of healing and discharging toxins, due to my own protocol, the latest sign is that I now have sweaty feet again after a gap of many years, and although the dementia is worse on those days, there are days in between when my thinking is much improved so I hope that is a sign that there is a chace of recovery for my brain. As the brain is an organ and there can be repair to even 'permanent' damage I think, there is hope I feel, but if we do nothing about it I fear that it will just worsen especially as we enter our 60's. I just wish I had started to take effective action earlier but maybe there is a time in which healing can occur rather than just improving things a bit and we must reach that point. I am doing this healing on nothing more than a good diet and a b complex on days I remember and the signs grow all of the time that it is working.

 

[coxy]

If find the brain fog by far my worst symptom really, obviously there's no pain with it so it's easier to live, with but it's just so embarrassing at times!!!!!! i yet again forgot my childrens birthdays when asked for them by someone on the phone, phone calls ALWAYS catch me out. I say to myself afterwards that i must write everything down before a phone call incase i get asked for dates of birth, mobile phone numbers etc, as i have absolutely no chance of remembering them if asked suddenly!!! Trouble is i forget to remember to write everything down!!! It's worse than ever at the moment. Ive had an MRI scan to rule out MS as my brain fog was so bad. Not sure if there's anything else i can take to help it?
Mums names at school, things like that are a nightmare for me.
My mum has just bought me an answering machine so that i don't have to pick up the phone until i know who it is. I can ring people back when i've rehearsed the call a bit.

 

[Mithriel]

I found that I would get a feeling like "something on the tip of your tongue", like a block. I couldn't get dressed because I just couldn't remember what to do. I found if I thought about clothes that people wore I could lay them on the bed, then I could put them in order, then I could get dressed.

This simplification of problems, or working round the blockage, I used to help me do things. I had three small children so I had to find something.

For instance, with my husband's help I made a list of everything in the supermarket I was liable to need. We cut it up, laminated it and put it on a keyring. I could look at a name and decide if we needed it , but just looking round the shop was a nightmare. I often just came out again.

(I once saw a TV programme about a woman who had a stroke and had this problem but, disappointingly, nothing else was said about it)

This was before computers so I got a filofax and divided it into sections. I listed all the clothes the kids needed for each season then I could see if they had what they needed. I wrote what they took on school trips, to birthday parties, to stay with their gran dozens of pages. Every time I struggled with something I would write it down so I had a list to follow for next time.

I use the computer now, but still need my lists. I have post it notes, to do lists, timers and alarm clocks. I still forget things :Retro smile:

I will put something out of place - I have a recliner I spend most of the day in and it is hard to get up but I will throw a pen on the floor :Retro smile:

I am in my fifties now and I think I am getting worse. Before it was mainly trouble thinking but now I can't remember things like when bills are due.

I hate phone calls. They are too quick. I fall over my words, forget where I am in sentences. It's horrible.

Sometimes I would forget how to get home. Before I had the kids I used to wander about aimlessly or go for a cup of tea, but afterwards we would play a game where they would take the lead. I don't think anyone ever believed me.

Mithriel

 

[Martlet]

My IQ was first measured by a child psychologist and came out at 145. I took an IQ test just recently (although it was a different one, which could explain the points difference) and it came out at 111.
No wonder I feel like I've got brain fog.

In the early nineties, I read that IQ can drop up to 20 points. I remember joking then that I would still have plenty to spare. But seriously, my brain fog is very intermittent and reflects my general condition, so the same test taken one day and I am around 140/145. Another time, I can stare blankly at the questions just trying to make out what they are asking. So, find a good test on the internet. Try MENSA. Although I'm not fond of the organisation since I never understood the need to prove one's IQ except in pursuit of an educational goal, they do have some good tests. And if you come back lower than you expect, try again when you are alone, quiet, relaxed and not so pained.

I had a slightly scary moment when I went into hospital and the nurse stuck a thingummy in my arm. I said to her "What's that" and she said "Oh it's a canula." I had to ask her to repeat it and then repeated it myself, as I know that's how I learn words best - "Right, a canula."

I don't think that's the same thing as IQ. You clearly knew what it was, but just couldn't recall the name. On an IQ test, you can either work out the solution or you can't. It is never there on the "tip of your tongue" or like I like to say about those elusive words, "at the front of my brain."

Then to another point about patients with ME having an IQ. I'm not so sure that's true so much as that intelligent people know how to get noticed, get doctors to listen, get a diagnosis and then come out and talk about it. Imagine if a person of average intellect gets sick and brain-fogged. Imagine if they just lose 5 IQ percentage points... do you see where I'm going? I also think that people of average intellect put more faith in their doctors and don't push for a proper diagnosis.

 

[jackie]

Hi all!:Retro smile:I"ve been under the care of a Neurologist for about twelve years.

I'm seen by him every 3 months for "monitoring". Last year he dx'd me with MCI (Mild Cognitive Impairment)...a transition period between brain "aging" and the onset of Alzheimers, for example. (not everyone goes on the develop Alz. but many do)...and wanted to start me on Aricept and Namenda...to slow the progression and "buy a few more years" as he said.

I tried to expalin that I really believed that what HE was seeing were the effects of ME/CFS...and declined the meds for the time being. When I saw him three months later I was in an upward trend with my cog/memory probs...and he actually REVERSED his dx!

I returned to him earlier than my normal appointment...and guess what?...RE-dx'd with MCI (I was in a downward mode!) We'll see in March (my next appt.)...I think he's beginning to dread my visits!

Now...4 years ago my Infectious Disease doc started me on long-term high dose acyclovir (he felt that chronic enteroviruses had obviously affected my brain as well as heart)...and he chose this route for me.

At the time I started the AV's I couldn't read, understand what was said to me, couldn't learn new things (tasks or information)...or remember much of anything. It felt like bits of my memory were continually being erased..not to mention suffering from horrific headaches and a sensation of "Brain Pain"!

At about the 1.5 year mark of taking the acyclovir..I began to notice a difference...gradual at first - then more profound. I could read/comprehend, write and absorb new info. But as wonderful as that is...the slightest over-exertion (mental or physical, with accompanying PEM) takes it all away.

My I.D. Dr. credits the AV with any improvement...it SEEMS as though that is the cause..as I haven't done anything alse. But I still can't say for sure.

I haven't the faintest idea regarding my I.Q....and my formal education is spotty! As a lifelong "working" artist I never was able to pursue the Education I wanted, to my regret. But I was a "reader" and attempted to educate myself as best I could...and strangely enough had, at one time, a nearly photographic memory!

That ability was the first thing to go when I got sick...and when I'm feeling "clear" now - I get snatches of that back! Weird!?

I certainly sympathize with everyone dealing with this - especially the young ones!

BTW..have had quite a few MRI's, a BAER and even an LP (in the early stages to try and rule out MS)...they show a few white lesions. But what I WANT is A SPECT!...or whatever the newer version is! My Insurance says "NO!"

jackie:Retro wink:

 

[Martlet]

Just for the heck of it, I just took the MENSA fun test. http://www.mensa.org/workout2.php

I'm still up there, but I couldn't find the right words, ten seconds later, to tell my husband that we needed a new tube of toothpaste, See. Word retrieval for me. Not IQ. And oddly, where I fell down on the MENSA play test was on the words, which is where I normally excel. So which part of the brain reasons and which part does the "talking"? Tired myself out.

 

[Sunday]

These stories strike a really familiar chord. I so agree about learning to loathe brain fog even more than exhaustion, though it's a tough call. People tell me I have a functional public face, but I know that, on my first trip to the acupuncturist, I stumbled around to all the doors in the building because I couldn't find her office; I promise or plan things and completely forget them unless I concentrate fiercely; sometimes words have turned into other words before my eyes. I miss long-term planning and thinking broadly; I miss synthesizing things.

However, I also want to add a note of hope, sort of building on what aquariusgirl said about methylation. I'm not trying to say that methylation is the only key to CFS, but I'm becoming convinced that it's certainly fundamental to solving the puzzle. I've been doing the B12 protocol on the Hidden Story thread for three months, and my brain fog has gradually lifted. One of the reasons I miss long-term planning and thinking broadly so much is that I was actually able to do them for a few days this week. It's been a long time since that happened.

If you want to check out the thread, know that just reading the first three pages will give you all the basic information you need. It's a long thread and it sometimes gets technical. When I first blindly clicked my way to it (it was a weird series of events that led me there) I read those first three pages many many times, I was so brain foggy.

Dipic, I want you to know that Freddd, who devised this protocol, was in much the same state as you are when he started it. He was a zombie, mostly lying in bed, occasionally going out in a wheelchair, living in a haze. And in one of his posts a few months ago he said he was up on his roof, fixing it. (You can find Freddd's story about his multiple injuries and illnesses here if you want to read it.)

I feel I'm starting to sound as if I'm selling something, but, weird and scary as going through the protocol can be, it's really giving me hope. I have a long way to go yet, and it may involve using other health modes, too, but this one feels vital.

And it is heavenly to be able to think and read deeply sometimes, anyway.

 

[susan]

Hi Sunday,
I have just started the Methylation protocol with a Doc here and had the Organic acid test done and my situataion was called woeful. I have been now about 5 wks on the protocol and like you I believe the theory sounds absolutely plausible. How long before you noticed any difference.?

 

[Gerwyn]

hi Dipic I had alexia agraphia, agnosia dyscalculia loss of propioreception cognitive map--In short no cognitive function at all----add seisures and i would say that was dementia a nice shorthand for absolute hell

 

[Gerwyn]

Sorry I forgot again----dementia can be caused by !2 deficiency as in Korsokoff,s symdrome

 

[Sunday]

Hi Susan, different methylation protocols may produce different results - and I know from being on the Hidden Story thread for a few months that even the same protocol (more or less) works differently in different people. This is such a screwy disease.

So I'll tell you my own experience, but it may not be yours. I noticed only small differences the first couple of weeks, and some differences were really pleasant, like an increase in sensations. Then I had a 'honeymoon' week, where I was like a weak but functioning person (first time in months). Then I had a 2-month crash. This part is pretty much par for the course; it's what Freddd calls startup effects, and his theory is that when you start getting enough B12 for all your functions they kind of start firing off at random. Basically what it amounted to in my case was an exacerbation of all my symptoms. It was pretty awful.

But through that I did notice that my neuropathies, which always get worse during crashes, were getting better. And pulling out of that, I found myself doing things like being able to put on spurt of speed in an airport - being able to get through the airport in the first place and make the trip without collapsing for days at the other end was a feat in itself. And I didn't collapse; I had to take naps and watch my action, but I was able to be semi-functional. Since then, each round of adding or upping dosage of something has sent me into some variation of crash, for any length from a few days to a couple weeks or more. And each time I come out of the crash, I'm a little better in some department.

Sorry for the long answer, but this is a hard question to answer as it's not a linear process (and brain fog does feature prominently).

 

[Sunday]

By the way, I've been seeing reports on the helpfulness of active B12s for autism, Parkinson's, Alzheimer's, and I think some other neuro diseases. Which makes me think it may be key in anything, or at least lots of things. neurological.

 

[aquariusgirl]

SUsan
I have been on the methylation protocol for precisely 3 years. I did the short-form in a freelance version for a year, then started testing and doing the more expansive yasko protocol for 2 more. Not the whole hog... I didn't do nearly enough testing or RNAs to really do the yasko protocol.
I don't really understand or relate to what Freddd is saying. I find I can only tolerate tiny doses of methyl B12.. because I think it drives my methylation cycle too hard overwhelming my body's capacity for detox and/or pathogen killing.
Thats what I think he calls start-up symptoms...
In my experience,it's a big part of the puzzle as we say, but I think it makes sense to do some testing.. the Vitamin Diagnostics panel, a Metabolic Acid Profile... maybe some fecal metals tests...to see if you're detoxing. Yadda. Yadda.
I also find binders and chelators an invaluable part of the process. I would wake up in the morning with horrible stomach pain.. or stgh.. and eventually figured out that I needed to take activated charcoal or citrus pectin or OSR1 or whatever to bind some of this stuff and get it out of the body instead of being recycled.
My impression is that the autistic community is way ahead of us on all this....
CHeers
AQ

 

[brenda]

I have just seen this

http://www.klinghardtneurobiology.com/AutismProtocol09.pdf

very interesting!