posted
Kind of curious about this...I imagine Lymebrain, or Lyme fog, or whatever you want ot call it has a range of severity. Would ordinary Lymebrained, the usual word finding problems, slowed rate of speaking, short term memory problems, and confusion count as dementia???
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posted
My LLMD has described my condition as reversable type of brain damage. I can't wait for that to happen - the reversing - but at least its a hopeful way to look at it.
Posts: 28 | From long island ny | Registered: Jun 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I think you need to look up dementia in a good dictionary or maybe at Wikipedia and make up your own mind.
This is not a label I would seek, as the usual "handling" is psychotropic drugs that cause brain damage and shorten life by YEARS, not months.
Here in So. California, a group called Genesys regularly CURES 90% of cases of senior "dementia" by just cutting back on their meds in a gradual way until they are only on what they really need at the smallest effective dose. Totally the opposite from nursing homes that can't wait to put seniors on anti-psychotics, even though these cause heart problems, diabetes, gagging reflex problems which lead to death by choking, sedation, etc.
For me, a label is as good as it is useful in helping me to find something I can do about it.
Lyme dementia--it happens; also Lyme schizophrenia. I have heard from the director of the California Network of Mental Health Clients that at least one person she knew was forceably locked up in a mental hospital due to un-diagnosed Lyme. Last I heard, electro-shock or psychiatric drugging did nothing to treat Lyme disease.
Getting a CORRECT diagnosis followed by some real help would be great! The "dementia" label gives no direction.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Michelle M
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posted
I believe the term is "cognitive dysfunction."
I did not see 'dementia' on my neuropsych eval, but I did see 'slowed processing speed' and 'significant memory deficits.'
I believe it is related to poor brain perfusion.
After treating two years, it might be as good as it gets. Which is not that good. Though definitely better.
I imagine it is frequently mistaken for dementia.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Vermont_Lymie
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Member # 9780
posted
It sure feels that way. The cognitive problems, memory lapses, anxiety and aggression, emotional lability, attention deficits, confusion and speech difficulties caused by lyme seem to have alot in common with dementia. I sure hope it is totally reversible with the right treatment.
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
It is a continuum of symptoms.
MOST people no, never approach true dementia.
SOME people do, some people die even at a young age of anoxic encephalopathy or vasculitis caused by Lyme disease.
SOME people have spirochetal induced Alzheimers.
I run a support group and the majority of people, frankly, are NOT dying, they have a chronic life-impairing malady. Then there is a subset of people who are like I was, progressing quickly. It is much like the designations for MS I believe- relapsing remitting- progressive etc- Some people are in Hecks Waiting Room, some people are on a straight snakes & ladders chute to Heck itself- Or Heaven, as the case may be*)!!!! One would hope-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Greatcod
Unregistered
posted
This from Dementia.com...Too close for comfort, as far as I am concerned.
What are the most important early indications of dementia?
1. Forgetfulness with effects at work:
Most people sometimes forget names or appointments. If this happens more frequently and inexplicable states of confusion also occur, this might be an indication for a decline in memory function.
2. Difficulties with familiar activities:
People who are very busy are sometimes absent-minded and for example forget the pot on the stove. People with dementia possibly not only forget the pot on the stove but also that they have cooked at all.
3. Language problems:
Most people sometimes experience difficulties in finding the right words. Dementia sufferers often cannot remember simple words and instead they use inappropriate fillers which makes it difficult to understand the sentences.
4. Problems with spatial and temporal orientation:
A lot of people sometimes forget e.g. the day of the week or they get lost in unfamiliar surroundings. Dementia sufferers might be in their own street and no longer know where they are, how they got there and how to get home again.
5. Impaired capacity of judgement:
People not always choose clothes suitable for the weather. Dementia sufferers sometimes wear totally inappropriate clothes. For example, they wear a bathrobe while shopping or several blouses on top of each other on a hot summer day.
6. Problems with abstract thinking:
For many people running a bank account is a challenge. Dementia patients can often neither recognise numbers nor carry out simple calculations.
7. Leaving things behind:
From time to time almost everybody leaves their keys or a wallet behind. Dementia sufferers however might put things in completely inappropriate places, such as for example the iron in the fridge or a watch in the sugar bowl. Afterwards they do not remember where they put them.
8. Mood swings and behavioural changes
Everybody has mood swings. People with dementia may have very sudden mood swings, often without discernible cause.
9. Personality changes:
With advancing age the personality of most people changes a little. People affected by dementia may experience a very pronounced personality change suddenly or over a longer period of time. Somebody who is generally friendly, for example, becomes unexpectedly angry, jealous or timid.
10. Loss of initiative:
Nobody continuously works with the same motivation. Dementia patients sometimes loose the zest in their work and the interest in their hobbies completely without enjoying new activities.
posted
It is comforting for me that most of my friends about the same age as I (70ish), have two words frequently added to their vocabularies...."whatchamacallit", and "whatshisname".
These words probably don't appear in a dictionary, but sure are commonly used by us seniors, and I am the only one in my group of friends with LD.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
GC,
I read some further articles on dementia.
My understanding is that dementia is a descriptive category of behavioral and cognitive functioning, at that point in time.
It does not have to be a terminal and progressive condition.
Just because these behaviors and abilities are here now, does not mean they cannot change for the better in the future.
The goal would be to re-train thinking processes or develop new self-monitoring processes, and also see if there are underlying conditions, such as fungal infections, toxin overload, hypothyroidism, etc.
It is not a dead end street.
Also, I would be careful in over-judging your own feelings of perceived limitations. By that I mean many of us do have effects of the illness, but there are other skills that have been developed to compensate. So our rainbow just has different colors.
Also, there are personal experiences that emotionally may play a self-limiting role, such as being sick for a while/being cognitively limited for a while, and then when we are better we have to remind ourselves that we really can do things as before.
We forget we can do things, and so operate as if they are not possible.
We are a little "bumpy" in the return to doing and thinking, because we may have been used to being "forgetful" or "saying the wrong word", and so it takes time and effort to talk as we used to, or think as we used to.
That is only a result of our experiences of not remembering. We actually learned to "not do" because we could not do, at that point in time.
But we surprise ourselves when we do things right.....why should that be a surprise? The other day I walked through the kitchen and managed to use all four limbs and hips, in consecutive and coordinated acts to pick up and put away, close doors, wipe counters, etc. All in one smooth motion. Two years ago, it was all I could do to pick up a cup and put it in the sink. And even that was mentally exhausting.
Sort of like re-training a muscle, after sitting on the sofa too many months.
What I want to say is: do not assume this is permanent. Sometimes it is just a temporary condition. We have fear because of the death sentence of alzheimers which is associated with dementia (alzheimers is a type of dementia).
Remember: they do not know what causes it. Do the omegas, do the B complexes, take something like the lions mane (such as in New Chapter's Mental/Nerve Repair blend....and I cant remember the actual name!),
try lymph drainage to let the stuff out of your brain, do mind stimulating games, read, write, monitor your processes, get the blood flowing with exercise and novel experiences.
Do not assume dementia is a dead end street. It has many causes, and not all are irreversible. Believe in your abilities to be more than what you were during the worst part of the illness. And invest in your development/return to functioning.
Hang in there!
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Cobweb
Unregistered
posted
quote:Originally posted by nan: It is comforting for me that most of my friends about the same age as I (70ish), have two words frequently added to their vocabularies...."whatchamacallit", and "whatshisname".
These words probably don't appear in a dictionary, but sure are commonly used by us seniors, and I am the only one in my group of friends with LD.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Number nine on GreatCod's list posted above is the one that scares me the most, because it is ruining my relationships, and they are what makes life worth living, after this disease has taken everything else from me.
Nobody seems to "get it" that I cannot choose to control the rage problem I've developed. This is not normal anger....I feel like I am possessed when it happens, and I am being blamed for it. Even my minister says it is inexcusable, and that my husband cannot be blamed if he leaves me over it.
I try so hard not to have Lyme rages, but can't always stop it from happening. I hide out and avoid some people because I am afraid I will "go off". I had zero temper problems before, so many people in my life still expect that from me,and can't see this is just like my other physical symptoms. This hurts so much, I can't even put it into words.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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Greatcod
Unregistered
posted
It does seem to rob of of so much that makes life worthwhile, Klutzo..I really disagree with your minister. He needs to understand Lyme neuro problems, and not just condemn you. My sense is that "Lymebrain" is more serious condition than many people think. The other side doesn't even acknowlege it. But when I look at my own experience and those of other Lymies I've known, of all ages, and then add in the posts I have seen here on Lymenet, I believe that we are dealing with a mild form of reversable dementia--it can often be turned around with treatment. But it is not a minor symptom. I understand that"Dementia" is a dirty word, and no one wants that label. But I think that Chronic Lyme often doesn't get the respect as a disease because its symptoms are too loosely defined. Sometimes the fatigue is much closer to exhaustion, the pain has to be medicated with opiates, and the cognative problems are very serious in their impact in work or personal relationship. Amy Tan, for instance, is a world class writer. She says that she just couldn't write any more because of the untreated Chronic Lyme and her Lymebrain. That is a major disability.
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heiwalove
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posted
cass a -
i think maybe i've talked to you about this before (lyme brain!), but i was forcibly locked up in a mental hospital for five months due to undiagnosed lyme. actually, that's not entirely true - i HAD a diagnosis, i knew what was wrong with me and i had a flamingly positive igenex result - but no one, not my family, not the ducks they took me to, not the psychiatrists at the psych ward, believed me. so, i was locked up, diagnosed delusional, and put on heavy dose antipsychotics (clozaril, for one, which is one of the strongest & most dangerous antipsychotics in existence).
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
My friend Cindys dad was in a nursing home and developed dementia and it WAS his meds- she and I worked together in a medical setting rehab for severely mentally ill drug addict alcoholics (99% court referred criminal population) and she KNEW meds- so when she went to visit him she noticed the dosages and was APPALLED= switched him to new nursing home, got all lowered and his brain was BACK*)!!!!!!!!! (Then he died about 3 months later but oh well, they got to have heart to hearts before he died*)!!!
ME, I had Lyme dementia, true dementia, very severe encephaloapthy. I could not remember my babys name BUT I KNEW SHE WAS MY DAUGHTER- if you have been in the same boat you will understand that I was PROUD of myself for remembering that fact!!! Whenever I couldn't remember her name I would go, "But I KNOW she's my DAUGHTER!" and it would make me FEEL better, more together*)*!)!! (Whew*)!
My EX-husband bascially gave me up emotionally because of the dementia aspect. His best friend Jimmy had sat on a needle on a couch in a using house when he did drugs- was sober when my husband met him and they became best friends- and he got AIDS and died- and when he went into dementia the last MONTHS he did not recognize anyone- he had NO family- and my husband would go and sit with him for hours and hold his hand which was very touching- one would have thought, yup, here is a guy who sticks to you in crisis-
but he said when he came home one day, a week after I had been FORBIDDEN to drive because of my stopping at green lights, and I didn't know the babys name and didn't know MINE and served him raw broccoli (because I THOUGHT I had cooked it) and burnt meat (because it had caught fire) he just GAVE UP just LET GO of me. He said he knew at that moment I was going to die just like Jimmy had and it was too much, he couldn't go through that again. So he let go. He was going to let me DIE ALONE!!!!!!!!!!!!!!!!!!!!! Scum.
Ok, a little anger? Yup...
ANYWAY, apparently I kept saying, and those of you who know me here can imagine my bewildered passionate repetitive and annoying inflection,
"WHY isn't the butter meltinG?"
on the broccoli because I thought it should be hot and steamy but I had never turned on the stove!!!!!!!!!!!!!!!!!!!!!!! (The meat had caught fire in the oven).
"WHY isn't the butter meltinG?"
"WHY isn't the butter meltinG?"
"WHY isn't the butter meltinG?"
Anyway, I am better now.
Thank goodness.
For LLMDs- and IV ROCEPHIN!*)*!)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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