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 Mother Diagnosed with LBD 
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Joined: Mon Aug 18, 2008 8:56 pm
Posts: 3
Location: Greenville, SC
Post Mother Diagnosed with LBD
Hello. I am new to this forum. My mother was diagnosed with LBD last Fall. It seems that this came on her suddenly as my Dad was dying in September of '07. She began seeing children, blond headed women in bed with Dad (which she became angry at him about) and all kinds of strange animals, objects, etc. We, of course, had never heard of LBD and assumed it was a generic diagnosis. Right now she is on .5mg Xanax twice a day and 2 at bedtime, zyrtec 5mg at bed, actonel 75mg 2 days a month for bone density. Was just taken off 4.6mg Exelon patch and seroquel 25mg at bedtime to see if this would help. She has had many episodes of delusions and recently they have gotten so bad that she is living in another world - cannot talk about anything that makes sense. This seemed to get worse when they increased her dosage of Xanax, but it may have started before that. We are looking for direction and thankfully found this web site. The Psychiatrist evidently does not understand LBD because he just wanted to put her on another anti-psychotic drug. We live in Greenville, SC and are looking for someone close who does know something. Also noticed the Mayo clinic in Jacksonville, FL has a LBD program. Would that be worth the pain and trouble of driving a delusional person to? Thanks for any advice and so sorry to ramble.


Wed Aug 20, 2008 11:43 am
Welcome to the LBDA forums, glad you found us:
The best drugs are the Cholinesterase inhibitors (Exelon), they are the ones that seem to work best, I can't say anything about the Xanax, we never used that one.I am sure other will chime in here. Mayo is a wonderful place but is far. I am dealing with a family member with a Dementia type DX and I found a place in Chaple Hill NC, just so happens he is an LBD Doctor, they are all going to take several months to get into, The one we are using told me that first appointment is at least 90 min and depending on what tests will be done I am sure will be longer I have set up for a full eval. I am very local in your area.
All questions are welcome here and if you post in the correct areas, the better the chances are for suggestions. So ask away!

Wed Aug 20, 2008 1:49 pm

Joined: Sun Mar 30, 2008 5:31 pm
Posts: 7
Location: Williamston, MI
Post Benzodiazepines
To David 58 (?) I think Xanax is a benzodiazepine and we learned the hard way that patients with LBD do very poorly on these. It's amazing how many physicians don't know this. I form forms to take to hospital next time to inform them not to give benzos to him.


Dreams a lot, talks to people and animals. Losing weight due to fact he can't stay awake to eat. Most of the time mind is foggy but occasionally clear which I treasure. In hospital bed now. Can get up to use commode but mostly wets disposable briefs.

Wed Aug 20, 2008 2:24 pm

Joined: Mon Aug 18, 2008 8:56 pm
Posts: 3
Location: Greenville, SC
Thank you all so much for the welcome and the replies. It is very frightening to see someone who was a vibrant, energetic person to a paranoid, fealful non-communicator in a year's time. My sister has noticed that since they took her off Exelon she just wants to sleep and can no longer figure out how to brush her teeth or answer her phone. Maybe that was a mistake to take her off it. The Seroquil was a drug she took, but from our understanding that is a bad one for LBD patients?! Thankfully we have family support here in town with my sister, brother and Aunt.


Last edited by davo58 on Wed Aug 20, 2008 3:55 pm, edited 1 time in total.

Wed Aug 20, 2008 3:38 pm
davo58 wrote:
. The Seroquil was a drug she took, but from our understanding that is a bad one for LBD patients?! .

Seroquel is a drug that many can't take but there are also many who tolorate it very well, Sadly there is no one drug for LBD, they are all trial and error. I always say start any new drug dosage low and slow! If you want more opinions on the drugs post your questions in the medication area, there you will get many replies.
Good Luck!

Wed Aug 20, 2008 3:49 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
Before we knew he had LBD, Jerome's psychiatrist prescribed Xanax to calm his anxiety. Pretty soon, he needed a higher dosage for any effect, and doctor switched him to klonazepam (Klonopin) -- the "dissolve in your mouth" version. That helped immensely, works quickly, and since then, I've learned from this list that it is frequently prescribed to help LOs sleep. SO ask your doctor about replacing the xanax with klonazepam.

As for sleeping all the time, some of us have had our LOs doctors take up the Boeve suggestion that Provigil be added to their med regimen. It worked wonders for Jerome as LBD has disabled his wake-up mechanism, and for others, there has been a decrease in hallucinations and delusions with the Provigil (it's the main drug used for people with narcolepsy).

Renata (and Jerome-in-Heaven)

Sun Sep 07, 2008 12:48 am
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