posted
Dave''s Lyme Nightmare Page (not completely updated, but has some good links, most of which are availabe through Lymenet, I believe.) I will try to get it up to date soon! DaveS Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Marnie-see note at bottom..
Tincup, I am not sure where I read this but I saw a site that had good coverge on abx..
Think it was in a chart form and I can kick myself for not copying it..It was on some site that a guy was offering to give away by the end of this month...He needed a new web service or something..But some of his stuff was very good..
marnie-glad to see you are back...I have tried some of my daughters Mg and I feel better..It works..lymemomtooo
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Some of the things that have helped me when I was new and old are:
The Booklet that PA LDA publishes.
CALDA's Newsletter
The vet who did the report and titled it "Lyme Disease: The Disease of Ignorance"
(He pretty much summed things up for me all in one spot whereas I had been getting the information in pieces.)
Sorry, low functioning right now so coming up with web sites is out.
You may have some of these on your newly dx post. It has been a while since I have gleamed from the post...but must admit I do need to go back and learn more or relearn. HA!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Don't know if these are already listed, but I recommend:
CA Lyme Disease Association Publishers of the Lyme Times, TBI political advocates. Highly recommended to join, of benefit to those in or out of the state. Publishes the Lyme Times.
Center for Health Care Rights The Center for Health Care Rights (CHCR) is a California-based, nonprofit organization dedicated to assuring consumer access to quality health care through information, education, counseling, advocacy and research programs. Focused on CA, but relevant to other states as well.
Feb 25, 2004 CA Senate Hearing on Lyme Disease Scroll down to February 25, select Health and Human Services Committee, Lyme Disease. Scroll past the first ten minutes or so, it is blank. Amy Tan (author and patient), Ron Keith (Marin/Sonoma Vector Control and patient), Dr. Steven Harris LLMD, Dr. Raphael Stricker, LLMD, and others testify.
Melissa Kaplan's Lyme Pages Part of the Anapsid.org Chronic Neuroimmune Diseases Information Resources for CFS, FM, MCS, Lyme Disease, Thyroid, and more...
The California Patient's Guide This guide is intended to inform you of your rights to receive quality health care and what steps you can take if you encounter problems. useful for those outside CA as well.
Tick Management Handbook Extensive information on the management of ticks in the landscape as well as personal exposure.
Matthew Gross's Lyme Pages Matthew's pages have been moved to a new website and are still accessible, though no longer updated.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I forgot about the hearing in SAC. That is a great resource.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
TC, would you include my/others info from page 10 about SS disability procedures, etc? Thank you. Betty
Lymesux, Thanks for the link here: TC, here is a suggestion from me.
Tincup and other posters, I just went back into my personal posts from page 10 on, and DELETED all "uping/bumping" or just thanking TC for her contributions.
Tincup, this important post and Treepatrol's copy with yours/his need to REMAIN AT THE TOP...have either of you contacted Bill directly so he could make sure it stays there and then we wouldn't have all the bumping/uping.
For a newbie, they have 12 full screens to go thru before they find any other important stuff in the middle.
I'll post a new post but just the posters names I saw from page 10 when I joined your wonderful post "uping/bumping" are:
There are many more from 2+ years ago when TC originally posted it; perhaps if they are still on the board & I didn't show their name and you see it, you might mention this to them.
If we ALL who just "uped" would DELETE these unnecessary replies, the newbie would have less screens to go thru to read any important links/info that anyone else added to your wonderful post TC.
With our brain fog, we have so much other clutter to contend with in our lives; would be nice to come here to Tincup & Treepatrol's posts and read important links/info without the "bumping/uping".
We could stay focused & print off w/out have bumping replies in between saving us paper.
How about it gang? Thanks for considering. Betty G., Iowa
[This message has been edited by bettyg (edited 27 November 2004).]
Posts: 1 | From US | Registered: Aug 2015
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
It would be nice to have the info broken up into easy-to-digest categories. They don't have to be completely accurate, but just so this mass of info is less....terrifying.
Read immediately (info about why blood tests might be inaccurate, and why LD is a clinical diagnosis; also success stories)
Read soon (general info about LD and coinfections)
Specific needs categories (like where to do IM injections, Rife tx and all the other txs, how to manage a herx, etc.)
Other links and support
Important reading, but you can put it off until you can manage to digest it: (everything else, like Tom Grier's tutorials, etc. )
Also -- maybe we can split some of the posts up, to lessen the burden of keeping the whole thing updated? I'm thinking, one separate post on treatment options, that listed all the links to Rife, MP, etc, that could be linked from the newbie post? Or is that too much off linking? Anyway, I'd volunteer for that.
TC. as always, thanks. And everyone else, too. Youse guys are so snif lyminaceous.
This site http://www.butyoudontlooksick.com/spoons.htm has a great story written by a woman with Lupus. It's the best way to explain what it's like to live with chronic illness to someone healthy. It's really worth reading.
Posts: 58 | From Palo Alto, CA, U.S.A. | Registered: Jan 2004
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