Does anyone know of treatment success rate at this late stage of Lyme? We'd like to try.
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Alz Daughter
Sorry to hear about your momma. I wish this hadn't happened. If we can help .. we will.
I don't know of any "facts and figures" on this to be able to answer your question.
I can share how I feel about it.. if you are interested.
For years.. not weeks or months.. but for years I suffered and was bed bound... horribly sick. My brain about fried.
The IV Rochpin I was finally given darn near killed me. I wouldn't do that again.
However..
Sometimes a low dose treament.. like Doxycycline.. can help to make a miserable day much better.
I am not a doctor.. but if I found myself in your position... I would try to see my mom was treated somewhat.
Like my pharmacist relative said..
"If there are 20 drugs out there.. and you only try 19."
Gotta think about that.
Anyhow..
It might make the difference of being able to smile or not. And it could show a big improvement.. but I do NOT want you to think I said it would be a cure or would turn everything around.
Each person.. no matter what the shape they are in.. will respond differently.
Please let us know how we can help.
And please know I think you are a very special daughter to be searching for help for her. She would be proud to know that.
Take care of you...
------------------
If you get the choice to sit it out or dance...
Go to this site and get in contact with them.
http://www.ilads.org/index.html
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[This message has been edited by treepatrol (edited 07 March 2005).]
when i suspected her "abnormal" onset of alzeimers was lyme i contacted dr f at columbia-when i described her symptoms he and another elderly doc who also has lyme told me treating her at this stage would probably give her so much pain and so little positive results i shouldn't do it. it would be like torture. if you have it you know what the herxes can be like.
so-i have backed off and she has been in a good nursing home-as comfortable as possible-but it is dragging on so long...i described how her bones are breaking just from moving in bed now in an arthritis post a few days ago.
i struggle with should i have listened to the docs or should i have pushed for treatment...but i am also dealing with myself and my 4 kids-3 who have been infected.
it would be good for us to talk i think-and also for anyone else on here with opinions-or experiences in the same thing. i've tried unsuccessfully in the past to find others going thru this. take care.
Sorry to hear of this situation.
I dont' have a family member with this dx but have worked very closely with Alzheimers disease and dementias so thought I would post my thoughts.
I have no doubt spichottes are involved with alzhemimers and lyme and syphillus are the cause, but I am not a doctor, but when I got sick and learned and expereinced the hell I went thought, I can tell you that the similarities are too much to be ignored.
I felt I was on my way to a nursing home in a few years if I did not get treatment and I am only 33. At my sickest I reminded myself of someone is first stage dementia. That place where you know things are not right with the person, but they manage to pull it off and can fool many at this stage.
I agree with Tincup, with low dose being the way to go in this tragic situation. I can only say seeing what I have that your family member is lucky to have someone like you wanting to help and considering treatment for the cause, as they have lost complete control over what happens to them at this point.
The other thing is, that it is drawn out. It takes a long time before they pass and can be years. Often with many added health problems and getting serious infections which further the deteriortaion but not necessarily to end life.
Any improvement in quality of life at this point it worth it you ask me.
It often freaks me out when I hear people saying, well they have no idea what's up at this point, or If I get alzhemiers I wont care cause I won't know what going on.
THIS IS SO WRONG!!!!
They are scared all the time. Like us, but worse at it is worst. You know the panic that rarely goes away when sickest and takes nothing to set off again. That.
I believe from my experience that they feel like children that are scared, like they got lost in the mall and can't find there mommies and are looking and looking for some kind of relief... wandering. Many walk and walk all day long, until their bodies break down and they end up in wheelchairs which drive them crazy cause now they have nothing to help relieve the fear and anxiety that plaques them cause of their illness.
I don't want to upset you with my post, but it can give you a better idea of what your family member may be experiencing.
If I was in this situation I would want treatment even if it killed me. That is no way to live out the last years of life, if there is a possiblity of improvement.
I hope my post has helped and not upset you, this is tough decison to make.
All the luck,
Lymiecanuck
1. Go this site to see what shows up on Alzheimer's, click on it, and it will show many links about lyme/AD...ok.
I came across this new web site of good info from Natl. Institute of Health's medline library....covering many other dx illnesses...
Alzheimer's/dementia, mental illnesses, FMS, CFS, IBS, etc. and was posted on www.lymenet.org.
Hope you each find some good info there. Saw it's from Art Dougherty, Calif. in 2001.
http://www.geocities.com/lymeart3/misdiag-links.html#disease
300 OTHER 300 medical condtions mimicking lyme disease w/citations and author's name, Art Dougherty, Calif., 2001, is at bottom of site page!
http://www.geocities.com/HotSprings/Oasis/6455/misdiag-links.html
Be sure to print off Treepatrol & Tincup's combination NEWBIE LINKS, check off as you read as there are months of reading there!
2. Email the Alzheimer's HQ to see what they might have on file too. I've been an advocate with them for many years.
3. My brother's wife died at age 40; yes 40 of early-onset Alzheimer's disease. Mayo Clinic did the 4 month autopsy of her showing plagues & tangles. She had this mindrobbing disease 8-14 years. She was treated for severe depression the entire time.
My brother has farmed the family farm for their entire marriage, so she could have been bitten by a tick, but I'm sure was never tested for this.
She spent 1 entire week at Mayo, Minn. being tested for this & that. Only thing left then was doing a live biopsy of her brain removing parts of it for exam.
Since she was so young, she was still having periods too.
Wished I would have been lyme literate then so she could have had specific blood tests before she died 3-93.
Your Mom is so lucky to have you being her advocate! Best wishes.
Betty G., Iowa
University of Northern Iowa protocal for lyme
Colloidal silver solution is taken by the patient. Used as early as the 1800s and is currently considered a drug supplement http://www.bio.uni.edu/cei/lyme.html
see in-vitro studies http://www.silvermedicine.org/scientificstudies.html
in-vivo studies against HIV http://www.silverinstitute.org/news/4b01.html
nail in the coffin concerning safety
read LETTER: COLLOIDAL SILVER IN PERSPECTIVE http://www.gaiaresearch.co.za/silver2.html
database on silver as a medicine
I worry all the time about this. I am also the first one to have been diagnosed with Lyme. Was not even considered in the others because Lyme was not even a term let alone Alzheimers at the time that my Great Grandfather and Grandfather had the symptoms, my uncle who is still fighting the disease is at a point it would not really matter.
They were all outdoorsmen spending time all over this country. Actually if you look at the direct line of my mom's side of the family and all those members associated, they have all suffered from one illness after another. Which does really make me wonder.
My mom displays all the signs of Lyme and refuses to be tested. Dementia has been a problem for her the past 10 years. There have been times recently that people have broght things to my attention about me that have made me concerned about whether or not am I in the prestages myself.
I really hope that the treatment I am undergoing now saves me from what probably is my destiny, but I am still not totally convinced that Lyme is directly involved or not yet. While I tend to believe it is, at the very least I do believe it is a causative agent.
What I do know is that the longer our bodies stay in an unbalanced state the more chance we have of progressing to these other diseases. I know it can be very frustrating convincing others, I try all the time, but there is a time that the treatment could be worse than the disease, since there is really not enough evedice to support that one can actually improve after a certain point in the progression of the disease.
I certainly understand what you are going through, and I am sorry for us all that we have such an incompetent and or devious government and medical community.
quote:
Originally posted by hwlatin:I certainly understand what you are going through, and I am sorry for us all that we have such an incompetent and or devious government and medical community.
I hate ditto heads but truer words have not been spoken. sickens me (literally).
I sent them a note back asking for info they have on anyone w/LYME misdx as AD/dementia.
When I hear more, I will post it here for all of you...ok.
Betty G., Iowa advocate for LD/AD/diabetes, cancer, & heart illnesses
My neuro found "white matter lesions" on MRI that he said were consistent with a prematurely aged brain and I even had neuropsychological testing done because my subjective symptoms were consistent with early onset Altzheimers or dementia. Guess what, it was LYME; the White matter lesions, the poor memory, the inability to come up with the correct word(s) the getting lost in familiar places, and etc.
If it were my mom and she tested positive for Lyme, I would start treatment (not IV because she would probably not keep the IV line in - in her current condition - and I would want to stop the treatment when she was well enough to tell me - herself - that the herxes were too bad for her to want to continue with the treatment. I'd be "dipped and deepfried" before I'd let my Mom continue in outer space if there was a chance the treatment for Lyme could bring her back to earth.
Just my opinion - and you know what they say about opinions 