LymeNet Flash: Alzheimers, Kristopherson, Lyme

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»	LymeNet Flash » Questions and Discussion » General Support » Alzheimers, Kristopherson, Lyme

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Author

Topic: Alzheimers, Kristopherson, Lyme

TrekCoord
LymeNet Contributor
Member # 48888

posted

I've been seeing quite a few posts on Facebook about this Alzheimer research group or that clinical trial for prevention of Alzheimer's

I have been posting on almost every one that Lyme Disease should be tested for and then putting in a link or two about Kristopherson's misdiagnosis of Alzheimer's which was actually Lyme Disease.

Don't know if it will do much good, but perhaps someone will actually do some research.

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I still have a good time wherever I go!

Posts: 138 | From Lost Wages | Registered: Oct 2016 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

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Thank you for doing that. What you are doing really matters. For anyone with energy and access to which ever reply options there are, please continue. The ILADS.org and LymeDisease.org links are also very important - or at least the names of these key groups to find the right detail.

Too many think the CDC will have what they need and just stop there.

As to "someone doing research" Alan MacDonald's work is stunning in this connection.

Oh, I see now you were talking about readers / individuals doing their own personal research to find the real information. The best source to date:

https://alzheimerborreliosis.net/

Alzheimer Borreliosis

Welcome to the website of Alan B. MacDonald.

I am hospital pathologist by trade and my world is microscopic images. . . .
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Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

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I don't post in other places, have zero social media access to do so. So, for others who do, if it is workable, I hope these links will help. Sometimes, though, just the name of the organization can be posted in the reply sections as links won't go through. That's still vital, though.

Sometimes, with the www. omitted, the main part of the address with the .org (or whichever it is) might post. That might speed the reader along if they know that much.

Some top informational sources to consider including in any postings:

http://www.ilads.org

ILADS - International Lyme & Associated Diseases Society

http://www.ilads.org/education/physician-training.php

ILADS Physician Training Program

https://www.lymedisease.org/

Lyme Disease.org - a top patient education organization

http://www.lymediseaseassociation.org

Lyme Disease ASSOCIATION

https://globallymealliance.org/

Global Lyme Alliance
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Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

SOMEONE will pay attention, Trek! Even if you save one person, it's worth it..

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--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

lpkayak
Honored Contributor (10K+ posts)
Member # 5230

posted

Tom Grier is on facebook now and posts regularly about research. His own and others

I know two top notch llmd s who post also.

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Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004 | IP: Logged |

BugBarb
LymeNet Contributor
Member # 210

posted

I was on Namenda, an alzheimer's drug, for the cognitive problems I had when my lyme was the worst. Fast forward a few years and I had to get a new neurologist. She didn't think I needed the namenda anymore so she gave me a standardized memory test. I passed, so no more namenda. I am a lot better than when I started on it. My memory isn't 100%, but it's around 90% which is pretty good.

Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000 | IP: Logged |

Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

posted

UPDATE;

Kris Kristopherson is doing GREAT !

https://tinyurl.com/yyr9fd4c

Posts: 2977 | From Florida | Registered: Nov 2016 | IP: Logged |

aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960

posted

Great job TrekC! My sister read a book by the fiction author Amy Tan who mentioned in her forward the struggles she had with Lyme disease.

I had a lot of Neuro symptoms similar to hers, and that's how I FINALLY got started on the right path to diagnosis and treatment.

[woohoo]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 6134 | From Columbus, GA | Registered: Jul 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

That's awesome, Bonnie!

AK.. I have one of her books. I still haven't read it. [Frown]

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--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

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