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» LymeNet Flash » Questions and Discussion » General Support » To those who have read "Cure Unknown"

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Author Topic: To those who have read "Cure Unknown"
tickled1
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I'm thinking of reading it but since the Cure really is unknown, am I just going to upset myself by reading it? Have any of you adjusted your treatment in a way that was helpful based on things you found out in the book?
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John S
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That book is the most informative source of information about this disease.

It isn't the only source. It won't tell you much about what exactly should be your treatment, but it will let you know exactly what is going on.

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tickled1
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Am I only going to get depressed or upset myself by reading it? Sometimes I find that even surfing around on this site freaks me out and probably does me more harm than good by stressing me out and worrying. I tend to get a sense of hopelessness like what's the use in trying anymore if I'm never going to get rid of this awful disease anyway.
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John S
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I don't think it will cause you to lose hope, there are alot of positives in it. I would reccomend everyone to read it.

You can probably get it from your library.

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kimwg
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Actually, I think that book would freak you out much less than an hour spent cruising around LN.

--------------------
Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck!

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Tincup
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No need to add to the "freaky" part now. I know that place.

Someday when you feel stronger... then you can read it.

Sometimes I can't even watch the news I am so sensitive... but other times it is easier.

Don't push it.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Ann-OH
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I agree with Tincup. Don't read about Lyme if you are feelng stressed out about it.

But it is an excellent book to recommend to others to read so that they will understand what you are going through.

When you do feel up to reading it, you will find it is brilliantly written and hard to put down.

Ann - OH

--------------------
www.ldbullseye.com

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Leelee
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I read the book, but confess I don't remember much. That is a problem I have a lot these days.

If you are worried it will upset you, I would hold off. We have enough things going on already. I was like that with Under Our Skin. I bought the DVD but then did not watch it for weeks. I was too scared.

Cure Unknown was a useful tool for me. I was having a difficult time grasping the politics behind Lyme. I can't recall all the details, but I do remember enough to know that it was thoroughly explained.

She is a very good writer. I also have two other books by Pamela Weintraub.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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kam
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I wished I had highlighted parts of the book as I keep recalling them now and would like to know where in the book they are.

I agree with TC...no rush. Just read it when you are ready.

I must admit I was on a roller coaster ride while reading it.

But, plan on rereading it at a later date. Lots of information. Well written.

It helped put some of the pieces of the puzzle together for me.

I also got to learn a bit more about the names that keep coming up in the lyme community.

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radfaraf
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There really isn't anything in there that is ment to be suggestive of treatments you should try. That isn't the purpose of the book.

Mostly educational about the history of lyme and what people go through.

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DJP
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I just started reading it and I read a bit and have to put it down and then pick it up when I'm ready again.
I just keep getting more upset and angry that this is still going on. I read the stories and almost daily, I hear the same stories over and over.
It's good though, because now that I'm feeling a bit better it has angered me enough to start doing some more advocacy.
P.S. I'm from MA as well.

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CD57
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I think you should stay away from it if you are in that place. But also whoever said Lymenet could freak you out even more is true!

There was some hopelessness and some positivity.

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lemonsnotlymes
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I read it at the beginning of the diagnosis and I think it caused more anxiety than offering helpful information for me.

And honestly, I am unsure that book should be recommended for anyone newly diagnosed. Don't get me wrong, Pam Weintraub did an excellent account of the disease and she continues to be a great advocate for all of us.

I think it is a great resource, great at explaining the controversy surrounding LD, However, regarding treatment in some ways it is already a little out dated.

Out-dated IMO is good news. That means we have moved forward in learning more and more about diagnosis and protocols that work.

Stay here for the up to the minute breaking news. Take everyone's account of LD in stride.

Just know that not everyone here is being treated properly. But what is proper?

Not everyone here has been diagnosed properly with the "full picture and extras" that go along with the diagnosis of LD.

Nobody here has all the answers though some like to think they do. [Big Grin] And I know I certainly don't because I learn something here every single day.

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hurtingramma
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When I read this book, I had been diagnosed for 5 years and had spent tons of time here, so I was ready.

What it really did was Pi** me off! Other people who don't have the disease have the same reaction. Especially those that live in endemic areas.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

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adamm
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My take on the book: A good text, but a severly flawed one in that it doesn't even touch on the biowarfare aspects of the coverup. (which are probably the driving force--see lyme-rage.info)

Anyway, though: if you think it'll upset you, don't read about Lyme (right--like I Ever abide by that rule!)

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kam
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optimistick

good idea re: having a notebook nearby to record those things you want to recall and page number.

when i am able to read it again, i plan on doing this.

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Tincup
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"A good text, but a severly flawed one in that it doesn't even touch on the biowarfare aspects of the coverup. (which are probably the driving force--see lyme-rage.info)"

addammm...

Because the book didn't mention the biowarfare stuff doesn't make it "severely flawed".

It really wasn't intended to be a book about biowarfare stuff.

Example- It didn't mention eating ice cream and the affects that would have on Lyme disease/yeast either.

Because it didn't mention the ice cream/Lyme/yeast connection doesn't make it "severely flawed".

And because it didn't talk about biowarfare stuff...

THAT is what made it a credible publication that can be taken seriously by medical professionals, patients and others in a position to help us.

I appreciate your interest in the biowarfare theories, but when we NEED Lyme to be taken seriously (our lives depend on it)... because, as you know, we need tests, treatment that works, help for those suffering, etc...

That isn't a topic that lends any positive punch to our attempts to get what we need.

Biowarfare stuff only serves to distract from what we can PROVE concerning our situation right now... and makes people professing these theories... well.... look nuts.

It gives the "other side" (IDSA and others) something to use to discredit what we have worked so hard to accomplish for so many years.

Biowarfare added to our problems at this point won't make us move faster toward a cure or positive places.... it will only destroy us and set us backward.

Even this video (below) points out that the biowarfare "stuff" makes us look like something NOT to be taken seriously.

It compares biowarfare promoting patients with those from the "other side" who mess up the IDSA's creditability, like McStupid.

I'm sorry for you that the book didn't go into the topics you like to read about...

But I am more happy that the book was published and it is making a positive difference just the way it is.

See below (and know it isn't just MY opinion here) how biowarfare stuff is used as the "bad example" in the Lyme community and how it destroys our creditability along with McStupid's off-the-wall stuff.

And even the people McStupid supports (example-J. Edlow in the video).... think he and his theories are so whacked out at this point NO ONE can take them seriously.

This video puts those two examples (biowarfare and McStupid) together... as if they are one in the same "crazy" examples coming from Lyme land.

When something we say or do is compared to McStupid's actions, it makes us ALL look bad... and puts us in the same boat he is in.

[Eek!]

http://www.lymemd.org/Paxman_video.html

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Melodymaker
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Laura, I was misdiagnosed with Lyme for 25 years, so I learned some things.

First, don't lose hope. I'm concerned that you never get depressed or lose hope.

Best case scenario is to treat agressively to get rid of it, but regardless, Lyme can be managed so that you can have a full and happy life.

I found through the years that cutting out sugar altogether, eating healthy and light exercise, went a long way toward feeling better.

Go back to natural whole foods and cut out the sugar and packaged stuff.

This will not cure you, as I kept having relapses through the years. It will help you manage it.

Now that I know what it is, I am on antibiotics. I'm hoping for a cure, but I know this.

Even if I dont' get a cure, I've managed it for 25 years, and I'll manage it another 25 or 30 if I'm lucky.

Stay in touch with God, because no matter what path our life takes, we're all part of His family. Wishing you blessings!

--------------------
Wishing You Showers Of Blessings!
Lyme since Fall 1983 = Diagnosed Summer 2008
IV Rocephin 7 weeks Stopped due to drug fever
Now doxycycline
"For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11

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Keebler
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-

I'd been putting off reading this as I work very hard to keep my outlook in check and if I start crying I may not stop.


Amazingly, my local library had this. Scanning first, I see that the author has gotten well. She outlines how she did it. Dr. B, too, got well.

There is hope. See Chapter 44 - just 3 lovely pages. Of course, that needs to be considered in context but it gives such hope.

-

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seekhelp
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I seriously don't think any book could be more depressing than this site day to day. The cancer ward probably offers more hope at times. Especially when I read about someone in remission for years crsh hard and they need to come back. [Frown] This site has many nice, caring people, but it's a real downer at times.
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Keebler
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-

I like www.art.com or www.folkalley.com - I find the key is to not let our studies (and that is what this is) color our whole world.

After doing some homework, it's important to find something of enjoyment - either on the computer or off (and better off).


-

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tickled1
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jigzone.com is a great place to do puzzles online!
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