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 Tooth extraction and possible implant restoration 
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Tooth extraction and possible implant restoration
It is definitely a crap shoot! I notice that two of the medications that my mom takes with no problem , furosemide and warfarin, are on the list and the two that REALLY caused her major problems, pregabalin (Lyrica) and gabapentin (Neurontin), aren't included.
The latter two were drugs that were tried for post herpetic pain when she had shingles last year. The main thing I've learned when trying any new medication with her is to start slow and really watch for changes and stop the drug immediately if I notice any cognitive change in her.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sun Oct 16, 2011 1:53 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Tooth extraction and possible implant restoration
I would think its a crap shoot…for at least one reason….

What areas of the brain are affected by the disease….

Different drugs affect….different areas….

if I were a thinking researcher….

I would take a look at my experience with amitryptilene…
then take a look at my PET scans….
then take a look at others PET scans similar who are similar…..(or some other method)…..
and not give them amitriptilene…..

ami….put my RBD off the charts the first night…..but, at that time…..who knew?

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Sun Oct 16, 2011 3:38 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Tooth extraction and possible implant restoration
Ellen, you are right. LBD is so variable that some meds that work wonders for one are disastrous for another person.

This list is a general one that applies to a lot of LBD patients and is to serve as a warning to be very, very careful. It acts as an alert system to use with medical professionals to get them to stop and do their own appropriate research before taking action that could cause harm. It should not be considered as definitive or complete due to disease complexity.

As you said, my understanding from John's neurologist is that almost any new med should be started at low dosage and very slowly increased until it is effective for that particular patient. And start one new med at a time.

As I understand it, a good rule of thumb is to avoid anticholinergics.

There will always be variations among patients due to the complexity of this disease.

Robin, John's neurologist is involved in helping me make sure I do not include mistakes in what I am including in my book. And I doubt that any such list would ever be complete for every patient---it is merely a guide to assist and hopefully help avoid some bad outcomes by allowing a wise question to be asked at the right time.

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Oct 16, 2011 10:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Tooth extraction and possible implant restoration
Pat,
I guess there is no agreement among neurologists (even LBD experts) about such a list, which is why the LBDA has never put out one. Dr. Van Gerpen is the only MD I've seen attach his name to his list; I've always wondered why that's the case.
Robin


Sun Oct 16, 2011 11:41 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Tooth extraction and possible implant restoration
Robin, I suspect it is that little word "liability" that so dominates in today's world.
But those of us who are struggling to stay just above the water line of LBD need to have SOME ideas about what to avoid and to at least ask questions about. That is why I compiled a list from what I have found from various places. It can start a productive discussion with your doctor, and that alone can lead to better, more careful treatment.
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Mon Oct 17, 2011 12:05 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Tooth extraction and possible implant restoration
Pat, that makes sense to me.

I am sure that part of the problem is that not all persons who are diagnosed with LBD have LBD, and that even those who do may also have other conditions.

So maybe there is a drug that nobody with Lewy bodies in their brain should take. But some people with lbd seem to do OK with it -- and maybe those people don't really have Lewy bodies in their brains, if you see what I mean.

I think that it will be a huge, huge breakthrough to discover a biomarker to allow definitive diagnosis.

Meanwhile, a list of what to be cautious of, based on current knowledge, would be helpful, as long as all parties know that it is not the absolute definitive list.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Oct 17, 2011 12:19 am
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