thank you for getting back to me even if i had to wait a little for good answers back from Medical and Scientific staff to research AD & lyme disease team.
thank you kate for clarifying this to my chronic lyme mind since i'd heard before there was a strong relationship of the 2 illnesses.
i'm copying lda pres. pat smith for her knowledge and filing of the nationwide alzheimer's assn. perspective on both illnesses/differences.
to all receiving this, i/betty color-coded important parts to my lyme mind and emphasized the NOT/NO from AD so they stand out to my mind!
kate, i'll continue being a AD advocate as i've been the last 15+ years. thanks!! betty, iowa *********
Kate Gordon wrote:Wed, 24 Jan 2007 13:02
Betty -
Sorry that it as taken me a while to get back to you on this issue. We recognize that you are certainly a very supportive and active advocate and I wanted to get a clearer picture of the thoughts you outlined.
It is quite a shame that your lyme disease went misdiagnosed for so long. Glad to hear that you are receiveing proper treatment at this time.
I took some time to ask our Medical and Scientific staff to research AD & lyme disease. Their staff has provided the information below .
Lyme disease does have a well recognized late-stage impact on the brain and other parts of the nervous system, but those effects are commonly associated with untreated disease or the small percentage of people for whom treatment doesn't work completely.
Interestingly, Lyme is caused by a bacterium in the same microbial family as syphilis, which is also associated with cognitive changes in its late stages.
Some years ago, testing for syphilis was part of the standard AD diagnostic process, it's now been dropped from the routine workup.
There are also other agents associated with cognitive changes late in the course of infection--
HIV, post-polio syndrome, etc.
And then there are the acute brain infections--
encephalitis, meningitis, and so on.
There are currently NO infectious conditions that are routinely considered as alternative explanations for symptoms in an AD workup because these conditions really tend to have pretty different clinical pictures.
The acute conditions such as encephalitis come on suddenly and there are often pain and changes in consciousness as well as cognition.
When cognitive changes develop as a result of a chronic infection like Lyme or HIV or polio, they would rarely be the only symptoms of that disorder.
There may be some symptom overlap, but the complete clinical pictures would typically be quite different .
At this time, the Alzheimer's Association does NOT feel that there is a connection between these diseases that is germane to our mi ssion.
Hope this provides some insight. Regards,
Kate Gordon Associate Director, Campaigns and Grassroots Advocacy, Alzheimer's Association Advocacy and Public Policy Division [email protected]
From: Betty Gordon Sent: Wednesday, December 13, 2006 1:29 AM
To: Alzheimer's Association Public Policy; Cc: LDA Pres. Pat Smith
Subject: have you discussed AD & lyme disease before? AD Forum 2007
good morning~
I'm a CHRONIC LYME disease patient of 36 years; 34 years misdiagnosed with everything else, and 2 years in lyme treatment.
Since AD is one of the 300 other illnesses that LYME MIMICKS, have you had a speaker address whether it's AD or lyme disease?
My brother's wife, Cheryl, died of early-onset AD on 3-15-93 at age, 40; yes 40! She had AD between 8-14 years and was treated only for severe depression.
Her Mayo Clinic, Minn. autopsy took 4 months and they said she had extensive plagues/tangles. BUT I'm sure lyme disease never entered their minds, and currently; they are NOT GOOD LYME LITERATE MDS THERE EITHER.
I don't know what's scheduled to be on your program, but this NEEDS to be addressed please!
My brother farmed our century family farm; Cheryl helped right along side him walking beans, etc. Thank you for your consideration and prompt attention!
I would like to suggest contacting Mrs. Pat Smith, president of the Lyme Disease Assn., www.lymediseaseassociation.org .
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I've never known anyone with AD, but do they have other symptoms related to Lyme other then the cognitive impairment?
Posts: 1251 | From california | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
That is complete and utter b@*@*&@^!!!!! excuse my profanity!!!!
-------------------- 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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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Perhaps they only looked for a swollen knee and a bull's eye rash when they evaluated. And then gave them an ELISA. But how could they rule out all infectious etiology if they did not investigate lyme?
Possibly borrelia is even more insidious and underhanded when the immune is strong enough to keep it in cystic form. Unfortunately, from what MacDonald has seen, the cystic form performs its own damage.
Another tragic consequence of IDSA.
I have a funny feeling that investigative science is not that accurate, and it sends them down the wrong path.
Look at the CFS thread (somewhere here today). They did find borrelia in a certain subset.
It would not be far fetched to think that there are many infectious agents, and that AD, CFS, etc. will have many etiologies. They are only looking for fulminant forms.
Writer said "germaine to our mission".....what is their mission then?
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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bettyg
Unregistered
posted
yes, if you have DOCUMENTED MEDICAL EVIDENCE that lyme is in ALZHEIMER'S BRAINS ...perhaps MRIs, CAT SCANS, AND AUTOPSIES,
please email kate gordon above at the address i showed!
as i suggested in my initial email to alz org, i wanted them to have a presentation at ANNUAL A.D. CONFERENCE of LYME & ALHZEMER'S BE RELATED OR MISDIAGNOSED!
glad you found this of interest also!
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
My father was diagnosed by a well respected neurologist in Atlanta...He's been in a nursing home for six years. His disease waxes and wanes.
The precipitating event of our suspicions that something was wrong was his knee replacement surgery three years previuosly. The orthopod found massive inflammation and moderate arthritis in the knee rather than extensive arthritis.
My father refused to do the rehab after fully understanding its critical part in full recovery.
He hobbled on continuing to serve on the boards of three international companies. One day he woke up and didn't know to which city he was to fly for a board meeting that day. Another time he called home from Denver not sure if he was heading home or heading to a meeting.
That's when my mother decided to get help from a physician.
Within a few months he could not walk from pain in his legs, not the knee.
He had arthralgias, neuropathies, brain fog, word retrieval issues, etc. He has always known all of his friends and family, to this day. His short term memory is very bad, but he has not forgotten anyone.
He flows from a passive, almost catatonic patient to one who is furious, with hypersensitive hearing and hypersensitivity to touch. Tough him and he'll swing at you...because it hurts! Bright lights hurt his eyes.
Suddenly he'll be gregarious, speak with clarity and feel well for a couple of weeks, but still not able to walk, but able to help a lot physically.
Yet he was diagnosed and put in the nursing home....a very nice one, on psych meds and only motrin or tylenol for his pain....I am in no way angry with my mother....she has knocked herself silly trying to help him and be there for him throughout all of this.
I explained untreated lyme disease. She listened and asked that he be tested. It took six weeks as we had to wait for him to cycle around to the nice guy. The test came back, the results were not shown to my mom and the doctor declared that he does not have lyme disease. They used their local lab.
I requested a copy of the test results with my mother's blessing. The doctor refused to give them to me even though my mother gave permission for this. She is his conservator. When she asked for them he said that she wouldn't know how to read the results so why....she told him I am a nurse and a lyme patient. He still refused patting her on the head.
She and I both know that he most likely has lyme. He traveled to Martha's Vineyard and Cape Cod frequently for leisure trips in the ten years befor all of this began.
But, he's so far gone that he would pull out any IV. Drawing blood at this point is almost impossible. He refuses staunchly and is a very tall, strong man.
He would not tolerate a herx reaction physically. Being in bed for six years has taken it's toll on his health as well as any other diseases that he may have.
He gets urinary tract infections twice a year. They put him on cipro and every time he gets horribly ill..for about ten days...then he suddenly is better than he has been in months and months....sounds like a herx to me.
That is as close to treatment as we can get. He can't tolerate antibiotics any longer. His herxes are worst than any I've ever had and I spent nine months on IV and six years on various orals.
The doctor is very concerned for when the UTI issue rears its head again. He is afraid to give him any more antibiotics. His liver can't take it, the pain is agonizing. He broke his hand fighting against someone trying to help him. He struck it on the bed rail. He's quick for an old crazy guy.
So YES!!!!!!!! there is a great deal of overlap in the diagnosis of lyme disease as Alzheimers Disease.
And YES!!!!!!!!!! the doctors have their reputations on the line in a final diagnosis of Alzheimers. One guy showing up with lyme, getting treatment and improving would destroy any doc's reputation.
The diagnosis of Alzheimers carries so much weight...the end of a person's freedom and time of consideration as being a valuable member of society, much less able to think or tie their shoes.
To be wrong after thorough evaluation by one of the best in the field is unthinkable....
For him to be where he is is unthinkable...to think that the doc's reputation is more important than a man's life is unthinkable!
The Alzheimers association is dead wrong. It's no wonder he is depressed and angry...It breaks all of our hearts...
Posts: 1062 | From CA USA | Registered: Jan 2001
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Stupidity and incompetence are barriers that are very hard to circumvent in the medical profession.
When we see a new doctor we never mention the previous doctor. It is best a new doctor start over and not have his opinions colored by previous records.
Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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quote:Originally posted by breathwork: To be wrong after thorough evaluation by one of the best in the field is unthinkable....
For him to be where he is is unthinkable...to think that the doc's reputation is more important than a man's life is unthinkable!
I'm so sorry your father [& family] are in such a terrible position due to his illness.
Lyme disease robbed my family too.
Tell your mother we are thinking about her and supporting her in prayer.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
breathwork,
thank you for your very touching, lovingly-written post about your dear dad w/late stage alzheimers!
here's a man with money who had the BEST of MDS TO GO TO! he couldn't get the diagnosis and treatments needed to deal with this all.
BW, have your Mom go after that dr. who refused to give HER/conservator of your dad a copy of LYME TESTING BLOOD WORK! perhaps a letter from her ATTORNEY would do the trick!
BW, have you discussed with your mom about having a full autopsy on your dad so you can start the paperwork to have that done?
it's also too bad the 1st INTERNATIONAL CHRONIC LYME RESEARCH CENTER IN COLUMBIA UNIVERSITY, NYC, has NOT opened it's doors yet since they are around $200,000 short to OPEN IT! Dr. Brian Fallon is the director of it. you can read more in ACTIVISM post about it if you'd like to learn more ok!
1 of the things they were going to do were AUTOPSIES !!
i was hoping when my time comes, that my body would go there so they could learn from my case since i have so many life-threatening illnesses in addition to my chronic lyme of 37 years!
breathwork, i would like to consider when your dad dies since he's a very prominent intl. board of director, that memorials be designated for:
CHRONIC LYME RESEARCH CENTER at Columbia University to make it a REALITY for us all!
i do not mean to offend or anything, but my thoughts were going to the thousands of $$$ sent on memorial flowers for the deceased where these dollars could be helping ALL OF US LYME PATIENTS try to have QUALITY OF LIFE!
it's easier to think about these things now before a loved one's death when you are going thru all the deep trauma of their death even though you knew it was coming.
on my sister-in-law, cheryl, 40, no one ever prepared me for this fact:
you suffer 2 losses that day: the person she was prior to AD, and the AD person she had become plus if that person was your closest friend, like your beloved Mom's relationship w/your dad; that's THREE LOSSES!
does anyone else know what facility is good/dependable for ALZHEIMER'S/LYME AUTOPSIES? i honestly have no clue here. thank you all!
let's continue the conversation;
breathwork, i hope you will write kate gordon, alz org especially after your mom gets a copy of your dad's lyme blood work!
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I've told y'all before, but I'll say it again for any new folks. My husband was told he must have "early onset Alzheimer's" because his cognitive problems were so bad. The neurologist gave that diagnosis, and then basically blew us off. He was done with us. Since the MRI's, catscans were all clear...that was what he decided was wrong. He had given my husband steroids about three weeks before his "official diagnosis".....the steroids were just horrible for my husband.
It's been about 14 months on ABX now, and he is so much better. Still a ways to go before he's well, if ever. It infuriates me to think these doctors treat people like this.
Oh well, just our story. Best of luck to everyone!
Posts: 1366 | From Southeast | Registered: Sep 2005
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bettyg
Unregistered
posted
boomerang, thanks for sharing your husband's AD/lyme story with us too. sure is infuriating that they will NOT open their minds and DO WHAT WE ASK THEM TO DO. does your state have annual alzheimer's conferences? iowa does; i used to learn a lot when i went for 10_ years.
brother-in-law at 50 was diagnosed with FRONTAL LOBE TEMPORAL DEMENTIA. later it was changed to BIPOLAR/MANIC DEPRESSIVE. i think it's lyme also since he's worked outdoors all his life.
my sister-in-law's mayo clinic, minn. autopsy took between 4-5 months to get the results. ******************************************
they ruled out everything including: was she a mongoloid since they are known to get early-onset alzheimers! NO; she wasn't.
her brain showed it was full of "plagues and tangles" what alzheimer's does to the brain.
i'm sure her blood was never tested for lyme disease since she/brother spent 1 wk. up there going thru extensive testings.
the only thing they could have done more was a LIVE biopsy of brain where that could have made her worse than before.
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posted
The reason there telling you Alzheimers has nothing to do with lyme disease.Is because according to 90 percent of the medicle community.THERE IS NO LYME DISEASE.There isnt even a test for lyme disease at the present.That is why our doctors are getting shut down.So how can they determine who has lyme.And alot of Alzheimers is from chemicals.Those journal articles about bb in the brains of Alzheimers patients,the last one showed them to be inconsistant due to testing methods.I have it on cd somewhere but have to look for it.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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bettyg
Unregistered
posted
up; i'll send to treepatrol for his archive library also!
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