posted
Again, KNOW that I am deeply grateful for all of your help!
In honor of all of you, I have been telling everyone I know and some of the people I meet what you have taught me.
I also created a BLOG of my Tick experience called www.tickedoffliterally.blogspot.com -I have NO shame! I even posted a MacroZoom Pic of my Hairy Leg with a Deer Tick in it!
I detailed as much as I could of the things I NEVER knew before it happened to me (I drove 350 miles with a deer tick in each ankle!). I OUTED the ISDA too.
At the bottom I added a much deserved thank you to the people of LymeNet, and a mention/promotion of the movie, "Under Our Skin".
My husband and I watched all of the trailers this weekend, and I cried. I can't *believe* this is America!
I will still feel like I won the lottery if I don't get sick. I will still be forever in your debt.
I will do my part to advance the cause and the awareness of Lyme Disease. You ALL have me forever!
I WILL see the movie. I will tell everyone I know to go too. I will bring tissue!
I am Grateful I am angry! ...that our government would DO this to the people! I LOVE every one of you for what you do!
Please feel free to private message me if there's anything you want to share with me about my blog. My Warmest Regards!
P.s. I tried to make the blog Loads of fun and informative too.
I would LOVE to hear from those in the know. I would like to hear what you believe should be added if anything.
posted
Hi Betty, (Your pm box is full) Hope you don't mind if I respond here.
I am truly thankful for your input. I was also so very sorry to learn that Lyme ravages the
system to that it can take away one of life's best pleasures and the best access to new information (reading).
Ironically, this can impair the ability of the sickest to know what's being learned over the internet.
I'm sure there's someone putting things into more readable text, especially if the writings are Lyme-related.
As for the blog, I'm thinking of creating a second version, so that it's legible to the general public in one and to all Neuro-Lyme readers in another.
In fact, what a perfect way to communicate to the general public what is being done to the minds of those with the disease in advanced stages.
I am still shocked and appalled that the U.S. would let this happen to its citizens. Betty, You have been a godsend to me.
I will have all of you to thank if I don't get sick. I truly believe it. No matter what the probability that any one
tick is infected, let's remember that I had two! This was NO time to be a squeamish little girly-girl, so chicken of a bug! (But I was!)
I will always be convinced that if not for the intervention of the people here, I'd surely have ended up very ill.
Your opinion? Do you think that if I started a blog that does nothing but take Lyme-related info and puts it
into Neuro-Lyme legible print, that others would want to read it? It would be a great effort, but
if there were an interest I would sure like to try.
You're the BEST! Kindest regards, LL
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
posted
I'm really curious about the one dose treatment recommended by the IDSA (yeah, I know) that you mention on your blog.
My LLMD sees people who she treated for 2 months with doxy after an intitial bite who still have symptoms a few years later.
Has anyone else found the whole-take one dose-call me in the morning effective? I think too many docs are giving that as a panacea, and it doesn't work.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thank you for trying to educate people about the horrors of chronic lyme disease. I know you mean well but your blog contains some serious mistakes.
A single 200-mg dose of doxycycline DOES NOT provide effective prophylaxis. Even some people who get the full 21 day IDSA low dose treatment can go on to have chronic lyme disease. At one time I read a critique of Nadleman's study but can't find it at the moment.
Even if a single dose of doxy did work, it would not treat co-infections which occur in a large percentage of patients with chronic lyme disease. If one has co-infections, it is much harder to get rid of lyme disease. Co-infections were never addressed by the study that you quote.
If you want to impart correct information about lyme disease, I wouldn't use a link to ALDF. The information on that site comes from an IDSA perspective. IDSA guideline writers are on the board of directors. They don't believe in chronic lyme disease. There is a lot of misinformation on that site.
If you want to give correct info - point people to www.ilads.org
You state: "Did you know that if you remove a tick within 24 hours it's very unlikely you will get sick?"
That is info from the IDSA and not necessarily correct.
Much is unknown about lyme disease and the studies that are quoted most often are done by IDSA members who have used bogus criteria.
One of the bogus criteria includes the bullseye rash as a hallmark of lyme disease. As noted in "Cure Unknown" it is not proof positive of disseminated lyme disease since only 4 of the 20 strains that can cause rash actually cause dissemminated disease.
The author states that all the studies that were based on the rash assumed that all of those with a rash were infected when a significant number of strains won't cause disseminated infection.
This means that the studies that relied on the rash as proof of disease and showed a cure would be incorrect because some unknown percentage of people would have never had the disease to begin with.
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![[bow]](graemlins/bow.gif)
I am angry! ![[rant]](graemlins/rant.gif)
...that our government would DO this to the people! ![[kiss]](graemlins/kissing.gif)
I LOVE every one of you for what you do! ![[group hug]](graemlins/grouphug.gif)
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