Topic: Has anyone read "It's all in your head around the world in 80 LD stories"?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I just received PJ Lanhoff's book "It's all in your head" Around the world in 80 Lyme patient Stories. Book: http://tinyurl.com/6gaez2
I have had only read a few stories, all horrible treatment failure stories.
Has anyone read this, are there any success stories in this book? I have read about 5-6 of the stories, all of them extremely bad cases, all living with LD years and none ending with wellness.
I think the book (so far) is great for illiterate Md's and the general population to understand Lyme, but as an LD patient it is very depressing to read these stories and (so far) none are success stories...they all go on being sick.
When I bought the book, I was hoping it would be stories - that ended with the patients improving and the road to wellness - but not one so far, not one.
Anyone know if out of these 80 stories there are any that get well?
Kind of makes an LD patient feel hopeless and unless there are some sucess stories - I don't think I can read anymore.
I find the stories in II to be quite depressing also, so like you, I haven't read much of it either.
I was hoping to find more uplifting ones too.
Maybe there actually are some in there, but we just haven't found them yet?
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Keebler, Yes I do have Buhner's book, a non-ilads LLMD (I just love) see once in awhile is a Buhner fan - uses his protocol - I have thought seriously about trying it. It is a very informative book. Most amazing were the patients treated with Diflucan that got well and didn't relapse...did you read that??? Wow!
Another book with an ominous title was recommended to me by a lyme patient called "Unknown Cure" but she said it really empowered her...so maybe the title is deceiving.
Jennie, Did book one contain more positive stories. Boy, these are the worst of the worst and just sick endings. I am glad I am not alone in my thinking of this...I am afraid to read anymore of the stories because they are all so sad and upsetting with no hope in the end. I may try reading a story from the end backwards then I will know if I should read it at all! LOL!!!
I really would like to hand out copies to Md's that misdiagnosed me...ducks need to read this stuff for sure, starting with Wormser.
Yeah - depressing for sure..good for others who need to know how severe lyme can be for SOME not all of us and I'd like to think I will be well, I know we all need to think positively, this is really sinkin' my thinkin' and a few more stories like this and I am going to have to forget it.
I have great intentions of writing a book one day myself, this book has given me even more reason to write - a book of success stories only.
Hope of getting well is what gets me out of bed each day...gotta have hope.
The books can be a comfort to those who aren't sure if they have Lyme (and have little money.) The stories show the truth about what it's like to try to get treatment for chronic Lyme--ducks and all.
People can relate to it and know they aren't the only ones.
For many, the process of getting a diagnosis causes further crippling from PTSD (Post Traumatic Stress) as we are abused by duck after duck after duck after duck when we are desperately ill ... and with no money.
Especially for those who don't live in the upper east coast area: It's probably worse than getting a Lyme diagnosis in the 1980's.
i have bought both and will buy no. 3 when it is done as well. i've read them from cover to cover. yes, many are sad!
MANY MAKE ME COUNTY MY BLESSINGS OF WHAT I STILL CAN DO! THAT'S THE INSPIRATION I NEED TO KEEP ME GOING!
yes, i believe there ARE SUCCESS stories; just don't remember who or where they are located.
the stories have ALL been WRITTEN BY US, THE LYME PATIENT!
i'm in book 2; look for iowa; there i am!
there are at least 12-24 stories of lymenet members in book 2.
sorry you are disappointed; if you don't want to read them; how about DONATING them to your local library so OTHERS CAN LEARN or lend them to family members who have NOT BELIEVED YOU?
ALSO, go to top and do a search typing in name of book in MEDICAL; read all posts/replies...
IP: Logged |
posted
I recently read Beating Lyme by Constance Bean. It was just published.
Like us she had a story to tell and while she is not cured she does have a happy ending. She is 81 years old and a fabulous writer and interesting person.
Very factual, lays out all the political details, is more readable than Cure Unknown.
Posts: 79 | From Rhode Island | Registered: Jun 2008
| IP: Logged |
posted
I bought this book also because I wanted to read success stories. There are a few, but not many stories of sucess in the book. The reason being that most of the people are still in the treatment stage.
I didn't read much of book I at all and couldn't finish book II. Just too depressing!! I gave the books to a friend with a warning about the depressing stories.
I just finished Pam Weintraub's book, however and found it to be great!! I would suggest everyone buy this book, read it and then pass it around to your friends, family and doctors. I even bought an extra copy to pass around and plan to buy another to donate to my library.
It's the best book I've read in a long time.
dar
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I had an opportunity to be in this book 2 years ago, but decided against it because I didn't have a success story YET. I didn't think leaving a reader hanging that I was still in treatment would be very uplifting so I opted out. But all the stories are this way. Has anyone recovered in these stories since the book was written? The park ranger story is extremely depressing.
I think I am going to give this book to my pain management Md..he has nearly 2,000 patients, I am sure MANY misdiagnosed w/LD ...this will hopefully open his eyes that I am not his only LD patient.
Saw your story Betty!
I am serious, I started working on a book prior to LD (about a completely different subject of course). But now everything has changed and I am going to write a book about LD and have success stories only...when I myself am successful at getting well and can include all the hard truths - but in the end- the payoff.
posted
What about the book, "Confronting Lyme Disease: What Patient Stories Teach Us"?
I think it has about a dozen stories. Not sure if they are success stories or not -- have not read either book.
Would love to read some of the newer Lyme books, but right now between meds and supplements just can't afford the books as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
bettyg
Unregistered
posted
bea and others,
check with yoru local libraries to see if they will order an INTER LIBRARY LOAN or is it intra; always get confused!!
anyway they ordered 1 for me from CALIF. and i only had ONE WEEK TO READ IT!!! it was thick; one scott f recommends all the time.
i paid $1 for cost of postage to ship it here.
just an idea, and also ask your libraries if they WILL order specific books to educate others there.
ours will! they have a certain amount they spend on HEALTH; i get my requests in early!!
they did order book 2 being discussed here where my short story is featured!
book 1 had stories of those who had commited suicide and their families wrote their stories...
BYTES, i like your idea as well!!! good luck; thanks for reading mine; daise is in there too.
IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I read Daise's story...one determined woman in a tangled web of red tape and misdiagnosis, what you went through Daise to get help is UNREAL!! Such a relief you found help and were so determined!
Every doctor needs to read this book...this is PERFECT for Md's to see the struggles and seriousness of tick borne diseases...I wonder even if they read these stories, if they'd believe them.
posted
BYTES, so glad you read daise's story; unbelieveable what she has/is going thru right?
many others in there.
if you do a search on the book posted by me, 6147, you will come up with more names of those who are in there!!!!
IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
I do believe PJ directed the book at the general public as lyme sufferers know those stories well. Many of the contributors have gotten well or are steadily improving.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
daise
Unregistered
posted
Hi everyone (including those who are guests just reading, but not posting. Welcome!)
I've improved by leaps and bounds!
I'm well on the other side of Lyme and my LLMD and I have been going after the babs and bart critters.
May I make a suggestion? At the end of all of Lymebyte's posts is a link to her website and her story. She's gone from hellaceous pain to where she's at today and she has a ways to go, but look and see how far she's come. She's a work in progress! Now that's stunning.
One thing, was it Bea who suggested the book, Confronting Lyme Disease: What Patient Stories Teach Us"? But Bea hasn't read it.
That book promotes using the ELISA (Lyme titers test) and it lacks patient emotion and depth. I just can't relate to the cardboard stories. Stories were not written by the patients--that's the difference and that is huge.
The slowness of Lyme patient stories getting read "out there" is frustrating. There are many hurdles. It angers.
It also incites many and thank goodness for that. I say, hurray! People with chronic Lyme stories are slowly being heard "out there."
After decades of trying to be heard, the Lyme community is slowly getting through ...
Have a great weekend, everyone, especially those in hideous pain, in honor of Lymebytes. May you have the best weekend you are able!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
![[Smile]](smile.gif)
![[bow]](graemlins/bow.gif)
Now that's stunning.![[cussing]](graemlins/cussing.gif)
![[spinning smile]](graemlins/spinsmile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic