Early Onset AD

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HopeFloats
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Date Joined Dec 2005
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   Posted 7/2/2009 7:21 PM (GMT -6)   
Has anyone been diagnosed with early onset AD and stayed pretty much the same...
Husband is just 50 years old and was diagnosed with Chronic Neurological Lyme Disease in 2003.
Neuro lyme disease has some of the smae memory issues that AD has - Just wondering....any help or yout thoughts would really be appreciated.
                                                           HopeFloats

Red_34
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   Posted 7/2/2009 8:28 PM (GMT -6)   
AD is unpredictable. It can remain mild while slowly progressing over the years or it can be mild and severe in a blink of an eye. Has your husband ever had testing done to see if it's Alzheimers such as brain scans? If so, does he have plaque deposits on his brain? Also, if he had the scans, does the Lyme disease show up? <-I am not that familiar with Lyme.
 @--->--SHERRY--<---@
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-had 2 series of 3, OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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HopeFloats
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   Posted 7/3/2009 4:44 PM (GMT -6)   

Red_34

Doc never mentioned plaque deposits - on reports that we received it did say that all findings were conflicting for a diagnosis of AD.  But doc says that is what it is.  My husband has on several ocassions had a spinal tap and has tested positive in his spinal fluid for lyme disease.  We know that it is neurological lyme.  I am not 100% convinced that it is AD - this doctor will not eve talk about lyme.  He is very closed minded about this - what do you all think.......                                   HopeFloats


SnowyLynne
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   Posted 7/4/2009 4:15 AM (GMT -6)   
Is this your main Dr or Neuro? Get another opinion from a diff.Dr......
Lyme disease can cause many problems...........



SnowyLynne


HopeFloats
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Date Joined Dec 2005
Total Posts : 123
   Posted 7/4/2009 5:15 AM (GMT -6)   
Hi SnowyLynne
 
He is a neuro - has nos bedside manner at all and will not even consider that the lyme is causing these probelms.  Husband's lyme went undiagnosed for almost 8 years before he received the right treatment.  It had a good long time to do damage.  I think a second opinion is a good idea. 

Red_34
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   Posted 7/7/2009 7:07 AM (GMT -6)   
I agree that you need to find another doctor that is a bit more open minded. I really don't know much about Lyme but it seems to me that, as in every aspect of our lives, that we need to be advocates not only for ourselves but for our loved ones as well.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-had 2 series of 3, OA-Celebrex, Tylonel Arthritis and Voltaren Gel
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Alexander Hampton
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Date Joined Aug 2009
Total Posts : 4
   Posted 8/15/2009 11:34 AM (GMT -6)   
I'm new to this forum. I'm 46 and have been diagnosed with EOAD. I've been on Namenda and Aricept for almost two years now and Lamictal for epilepsy for almost 2 1/2 years. Anybody out there who can tell me whether I'll have to keep taking the Nam and Ari for ever or whether the medication is only effective for a certain period of time? Thanks

Red_34
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Date Joined Apr 2004
Total Posts : 23353
   Posted 8/15/2009 12:04 PM (GMT -6)   
Hi, welcome to Healingwell Alexander :) No one can predict the outcome of AD. It can progress rapidly or slowly. However, the medications designed for AD are meant to slow down the progression. Usually these meds are taken long term to slow it down as much as possible until (maybe) they stop working all together. But I hope for your sake that they help for many years to come!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Alexander Hampton
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Date Joined Aug 2009
Total Posts : 4
   Posted 8/15/2009 8:34 PM (GMT -6)   
Thank you for the kind words. I feel fine.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 8/17/2009 6:17 PM (GMT -6)   
Just by chance I happened to see this topic. 
 
I've had Lyme - probably for a very long time.  I've had problems with fatigue, malaise, anxiety, depression and cognitive problems.  Recently I had a neuropsychological exam.  We had the follow up meeting but the final report isn't out yet.
 
The neuropsychologist has a year post-doc work in the roles different parts of the brain play in cognition.  I had about 7 hrs of testing.  They do all kinds of tests to check out all facets of memory, concentration, attention, etc.  I'm wondering if you can get a referral for a neuropsych exam.  I believe AD looks very much different than the problems from Lyme on the neuropsych test.  I think it would give you a lot of insight into what is really going on.
 
I thought I was having memory problems and of course can't multi-task.  The tests showed that the underlying problems were different than I thought.  I have a major deficit in processing speed and also in problem solving.  There was some other stuff but anyways, there are many things still that weren't affected by the Lyme.
 
See if you can get a referral.  It is expensive testing.  My insurance considered the neuropsych exam a medical procedure and not a psychological test.  So it was covered. 
 
Oh yeah .... all those tests made for a very long day.
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


Alexander Hampton
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Date Joined Aug 2009
Total Posts : 4
   Posted 8/18/2009 10:25 AM (GMT -6)   
I wish I had Lyme disease. That may sound odd so let me clarify. My neuro has searched high and low and found nothing of the kind (I asked her to do so after reading some of your postings, for which I thank you). She was understanding, but concluded that my eoad is the correct diagnosis and not related to anything but a dying brain. It sounds weird to say that and to know that your alarm clock is ticking but you don't know the when its set to go off. I have frontal lobe dysfunction (which I understand is the reason I am euphoric as opposed to depressed), but in the midst of euphoria, I get frustrated, especially on the good days (like today) when I feel like my old self. On the bad days, I just feel plain stupid and I become agitated, which is difficult for my wife and kids. I'm glad you were able to find the cause of your 'dementia'. You are very lucky and I wish you the best. Sorry to be long-winded. I guess I just wanted to vent.

Alexander Hampton
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/18/2009 10:29 AM (GMT -6)   
By the way, if I haven't said it before, I'll say it now: I'm grateful for this forum. It is comforting to be able to voice (even though in writing) one's frustrations without being judged or feeling guilty about having a problem that others (siblings, for example) can't quite grasp is real and difficult to handle. Thanks.

SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 8/18/2009 11:24 AM (GMT -6)   
Hope ask your primary Dr to test you for Lyme..........
SnowyLynne


HopeFloats
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Date Joined Dec 2005
Total Posts : 123
   Posted 8/18/2009 7:54 PM (GMT -6)   

Hi SnowyLynne

My husband Jimmy was tested for Lyme Disease - he was initially bit in 95 - doc said then that it was a spider bite - he was bit a second time in 02 and was diagnosed at that time to have lyme.  Since then we have found out that he also has erlichiosis, bartonella and Q fever - all co-infections of lyme disease - I truly believe his cognitive and memory issues are from lyme due to the fact that it went untreated for 7 years - that's a lot of time to imbed itself in a body and to do harm - what do you think ???


SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 8/18/2009 7:58 PM (GMT -6)   
Ask for him to be treated,it's way past time..........Drs can be so stupid at times......
SnowyLynne


HopeFloats
Regular Member


Date Joined Dec 2005
Total Posts : 123
   Posted 8/18/2009 8:01 PM (GMT -6)   

Hi Again SnowyLynne

He has been treated with antiobiotics and IV antibiotics on and off for years - he feels better when he is on them but they can certainly take their toll on the body for sure - his stomach is a constant mess - that is why I wonder about the diagnosis of AD - his neuro has never quite accepted the idea that Jimmy suffers from chronic neurological lyme disease - maybe I am in denial about the AD probably because he is so young and we have 2 young children - life can sure suck somtimes ..........


SnowyLynne
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   Posted 8/19/2009 3:57 AM (GMT -6)   
There are many younger people who have AD in thier mid 30's..........
SnowyLynne


Red_34
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Date Joined Apr 2004
Total Posts : 23353
   Posted 8/19/2009 6:35 AM (GMT -6)   
Alexander, you are more then welcome to come here anytime and share your feelings. We understand what it's like to either have this horrible condition or knows someone who does. I do not have it but I seen my grandmother decline rather quickly and it was and is breaking my heart. So you are among friends now.

Hope, Lynne is right. It is not unheard of that AD can be diagnosed in people who are in their 30's but this is very out of the ordinary. I think the typical age range is 60+ to be diagnosed. But follow your instincts. If you feel that it is not AD but rather Lyme then persue it. Have you ever taken him to see another doctor?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


HopeFloats
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Date Joined Dec 2005
Total Posts : 123
   Posted 8/19/2009 6:48 AM (GMT -6)   
He has gone to 3 or 4 doctors who have confirmed that he does indeed have Chronic Neuro Lyme Disease. He has had numerous spinal taps and it does continually present itself in is spinal fluid. He has only gone to one neurologist and gotten the AD diagnosis. This doctor has never accepted the fact that Jimmy has Chronic Lyme - one of the most common problems with neuro lyme is cognitive and memory issues among many other issues. His Lyme initially went untreated for 7 years. If he does have AD I can accpet that and in some ways it makes me love him even more. I will always be here to take care of him.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23353
   Posted 8/19/2009 9:21 AM (GMT -6)   
Aww Hope that is just so thoughtful, kind and loving thing to do for your husband. You must love him very much. He is lucky to have you by his side. If the 3 or 4 docs say one thing and only ONE doc says another, I would stick to what the other 3/4 had said.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


HopeFloats
Regular Member


Date Joined Dec 2005
Total Posts : 123
   Posted 8/19/2009 9:56 AM (GMT -6)   
Thanks Red_34 - He is the best husband in the world....

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 8/19/2009 11:02 AM (GMT -6)   
Think I'd get a different Neuro......And take his Lyme dx with you......
SnowyLynne

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