I am here asking for a favor for anyone that can help me with any kind of information that I can give to my brother. He doesn't believe that his wife has Lyme disease but I know better. I am not 100% sure because I am not a doctor for one thing but I do know that all of her symptoms relate to Lyme. I don't want anything to happen to her and all she is doing is declining.

Is there anyone that can send me proof positive information on people that have Lyme Disease that are dealing with dementia and or Alzheimer's.

My brother is taking her to John Hopkins to get evaluated

He said if I could give him positive proof why she should get a western blot preformed and why through igenex he would consider going to a LLMD. I can't explain things very well because I am too sick to do that. I am vary forgetful and can't remember words well to explain anything.

Thanks and God Bless to all in advance.

I know I've seen Alzheimer's-type symptoms listed many times elsewhere just can't seem to find it right now.

Did you try doing a Google search for something like "Alzheimer's & Lyme" ?

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Tabby

Tell him I have all the proof he needs... but listening to YOU should be all that is required.

Tell him if he wants his wife to get better and live.. for stinking sakes at least TRY to do what he can to get the proper diagnosis and treament. He has been warned about that place. WHY allow ONE more person to suffer?

Is he afraid of a second opinion?

Tell him his life would be MUCH simpler if he listened to you NOW because if he doesn't he will be hearing about it the rest of his life... cause I know you.. and you WON'T shut up.

Actually...

Ask him which would work better for him..

My personal account of burying three of my own family members in the past two years who didn't listen until it was too late... or me telling him about the ones who got the wrong diagnosis originally (and therefore the wrong meds) from Hopkins..

OR..

Copies of the Hopkins autopsy reports from patients (unknown to me) who had brain involvment, lesions in the brain, dementia, etc. etc. and were given steroids and/or other useless meds for Lyme... while actually having Lyme disease positive serology?

OR..

A look at the photos of human brains at autopsy that were infected with spirochetes?

His choice.

Tell him he can certainly screw up his own life and health if he wants to.. but what gives him the right to force his ignorance on others and chance destroying or taking their life when he has been warned this could happen and HAS happened before?

Tell him...

If he "blows it" now.. and he will later learn he DID.. it will most likely haunt him the rest of his life because... after death.. you can't change your mind.

Tell him I have personally dealt with that place for nearly 20 years and to this day I have NEVER seen ONE Lyme patient come away from there with the proper diagnosis and/or proper treatment... and/or the proper tests. And I have had well over 40,000 contacts with Lyme patients across the country.

If I thought anyone had even a SLIM chance of being done right with tick borne diseases... by going there... I would say so.

Even some of the people I have known who WORKED there won't go there... and instead of using the hospitals insurance plan and getting help there.. these people have gone elsewhere when given a choice.

Tell him I know they have been sued for causing problems. Tell him they are connected to some of the WORST of the worst.

Tell him that all of the above is my opinion and I am not a doctor... just someone who cares that folks get HELP!

See the symptoms file here:
http://www.lymeinfo.net/lymefiles.html

There is some good stuff here:
http://www.lymeinfo.net/neuropsych.html

Lyme Diagnosis and Treatment (tests, etc):
http://www.lymeinfo.net/lymediseasetreatment.html

Art's Page:
http://www.geocities.com/HotSprings/Oasis/6455/ad-links.html

Just a few abstracts:

Beta-amyloid deposition and Alzheimer's type changes induced by Borrelia spirochetes

Borrelia burgdorferi persists in the brain in chronic lyme neuroborreliosis and may be associated with Alzheimer disease.

Concurrent neocortical borreliosis and Alzheimer's disease.

Search for alzheimer at the LymeInfo email list and more items come up. Here's one:

Alzheimer's Disease: The Physician's Guide to Practical Management

Hope this helps and best wishes!
Cheryl

I really have a heavy heart this morning!!
Reading about your sister-in-law makes me feel frustrated, angry, helpless, and depressed. It brings back so many memories of what our family went through with my father's illness.

Tincup has expressed what I'm thinking and feeling about the situation, so I won't repeat that.

Your sister-in-law is truly blessed to have you in her family AND on her side. Hopefully, your brother will listen to reason.
I know he wants "proof" but sometimes you learn more from the experiences of others.

I can't find the link right now, but will try to give you the correct info.
Some years ago, Dr Judith McKlossey, of Switzerland, performed autopsies on 14 Alzheimer's patients.
All 14 had spirochetes in the brain.

(Edit to add) The links are given above in tabby's response.

My father was MIS-diagnosed with Alzheimer's.
The correct diagnosis came too late and after several years in a nursing home, he died from complications of Lyme Disease.

Needless to say, his illness took its toll on all the family emotionally, physically, and financially. Nursing home costs in the 1990s were over $150,000 - none covered by medical insurance because dementia patients are considered "custodial care."

Believe me.....it was a horrible experience to watch someone slowly die from a treatable illness.
Over a period of several years, he lost his ability to walk, talk, feed himself, and last - his ability to swallow.
At the end, we were praying that he would be relieved of his misery.

He died from pneumonia, most likely a result of aspirating liquids when he was losing his ability to swallow.

After the Lyme diagnosis, we had attempted treatment, but we stopped after 2 months of so many complications -
-our ignorance of the disease and what it would do to him!!!
-he practically stopped eating & was getting dehydrated.
-the doctor was too far away.
-we could NOT find a doctor in Columbia to work with us.
-Daddy couldn't tell us how he felt, so we didn't know he was herxing.
-he couldn't remember why the IV was in his arm & he'd pull it out.
-sometimes he refused to let me give the IV.
-he said it made him feel worse, so he made the connection between the IV & what we know now was a herx.
-etc, etc, etc

At times, I feel guilty that I agreed when my mother begged to stop his treatment.
But I tell myself - you can only make decisions based on what you know, and at that time, I knew very little about this dreaded disease.

His ordeal is my reason for fighting Lyme by trying to educate people and help them find a knowledgeable doctor!! I'll do anything I can to help a family avoid the same experience.

They say that "Alzheimer's is a long good-bye." It's so true. You lose the person an inch at a time over a period of years.

Have your brother read "The 36 Hour Day" to see what life will be like.

Tell your brother that I understand how difficult this is & what he's going through.
I would love to talk with him about his wife's illness.

He can call -
Lyme Disease Network of South Carolina
Hotline # is 803 - 798 - LYME
or you can e-mail his phone number to me.
I will return his call promptly.

Go to www.sc-lyme.org
Click "SC News" and read some of the newspaper articles.

The Lyme Doctor in New Jersey who correctly diagnosed my father's illness said that EVERY Alzheimer's patient should be evaluated for Lyme disease!!!!!

I'd like to add -
evaluation MUST be done by a LLMD who will be experienced in "clinically" diagnosing Lyme & possible co-infections.
An LLMD will have lots of satisfied customers.

I hope your brother will consider this:

Alzheimer's is a death sentence.
They don't know what causes it, there's no definitive test for diagnosis, there's no treatment, and NO hope.

Lyme is a treatable illness and a chance to have quality of life restored.

That should not be a difficult choice to make.
Why settle for a diagnosis with absolutely NO HOPE!!!

Will be praying that your brother's mind and his heart will be open to what you tell him.

PS....JH sucks!

I had trouble getting my own husband to believe that the answer is NOT "everybody has lyme". Hopefully, you can get the info printed and let him do the research.

Why is his wife not strong enough to get herself help? Is this a power struggle thing?

I say this not to cast stones, but the guy I married was telling me to stop taking the abx (he was scared for my health w/longterm abx and amount)and I was in tears telling him back that this was the only way I knew of to get well, that his medical understanding and research was NIL! That I was getting my life back and that he needed to talk to a llmd or shrink!

When it came to my health, I mentally divorced him, printed out information on the disease and WOW, it's like living with somebody else.

It's hard when you don't have the strength and with family members it's almost always harder to deal with. Print it out and let him learn something. let your sister-in-law learn something.

My family was very concerned, and were even at the point of getting power of attorney because my mind was really messed up!

I do very well now since on antibiotics, but there are times that I will still draw blanks when someone asks me something.
But very seldom that it does.

I knew it was happening, and I myself was scared.
You see my mom had alzheimers, and to this day since her death, I still wonder if that was a true diagnosis.

She would act very strange, and see things like a fox's head by the mailbox. She lost her sight, hearing, and couldn't talk or walk.

I have asked my sister to find the autopsy report but I'm not sure what it will show.

My sister also said the report showed parkinson's. We never saw any symptoms of that!

She did die in 95, and she was old, but it all came on sooo quickly. It was right after my stepdad died.

The hospital she was at was horrible, and I still hold some guilt about it today!

My mom was a very spry active person, and kept herself in good shape.

She camped yearly, from spring till fall.
I don't know if we'll ever know the true answers.

We also had an aunt that died and doctors did not know what she had. I heard they put her on steroids, and she got enormously big!

We did try to get her death certificate, but that city hall said they didn't have it!

If I remember correctly, somewhere there is an article that show's bb on autosy patient's reports.

I know someone on here will find that article and put it on here for you.

I have had lyme for many years. It has affected my brain more than anything else!

I hope you find the answers that you need, but again this is my experience...not everybody is the same.