Ok friends.
I have a little story to tell. A story about me.
It's kind of a secret....unless you are in the family/friend category of my life.
I'm going to use visual aids....because I like those.
And at the end, they'll be a few questions--I'll need your help.......ok?
Here we go:
Hi. I'm Sheena.
This is me holding a lime.
Why am I holding a lime?
Wait! What is that on my arm?
Well, it's a PICC line, for antibiotics, of course.
*********************************
Let's start at the very beginning, story goes like this. (very, very, very short version.)
July 2008: legs go numb. then hands. then arms.
July 2008-Oct 2008: poked. prodded. tested. retested. scanned. pants dropped for strangers on multiple occasions.
Symptoms get worse. Neurological and joint pain.
Oct 2008: Diagnosed with Multiple Sclerosis.
Oct 2008-Jan 2009. Begin, and continue treatment for MS.
Feb 2009 UNdiagnosed with MS (hooray!), diagnosed with Lyme disease. (oh, Lyme/lime, get it?) (to learn a little about Lyme, Click HERE, then to Lyme 101, then click the Lyme Disease Tab)
My body is sooooooo over these crazy antibiotics. Not to mention my poor arm. We're pulling the line in a few weeks (hooray!!!)
But I'm still not better (not hooray).
Lyme Disease is a bacterial infection, carried by deer ticks. If caught early, it can usually be treated quickly with oral antibiotics, and there you have it. Unfortunately, we're coming up on two years for me....it's getting a bit trickier.
We need more options....and this is where YOU come in.
We love my doctor, and we are so thankful to finally find someone who is really trying to help us (we've bounced around alot) But.....big, stinky but......there aren't very many Lyme cases in Utah. While I know he is doing all he can, I sometimes wonder if there is someone else out there who has seen more people with Lyme, and knows some kind of magic trick to help me out.
I thought that maybe, just maybe, by posting a little something here for you all to read (all 20 of you), maybe YOU know someone with Lyme? Someone who's beat it? Do you? Can you help me? Spread the word?? I am quickly growing tired of this, and I'm pretty sure I'm ready to be done. Yep, I am.
So...please....if you or anyone you know is currently being treated for Lyme, or, ever better--CURED!!! YAY!! Please send them my way. I'd love to have a chat with them (no complainers please....I like to keep it positive around here, thanks:)
I have debated whether or not to post about this (it's going to be a struggle to hit "publish")....I like to keep it "happy fun" around here, and this is not so "happy fun", but I also know the powers of the www....and how happy AND fun would it be if we got these bugs out of my body! So I'm really crossing my fingers that this will work.
So there, now it's in YOUR hands. Good luck.
contact: sheenajibson(at)gmail(dot)com. thank you guys!!
and...if you really want to learn more about Lyme, be sure to check out the trailer for Under Our Skin, a documentary on Lyme Disease and the controversy of treatment.
55 comments:
Oh geez---I am so sorry to hear this! A former co-worker's husband and 2 children had Lyme disease. {I live in NC...we have lots of ticks, especially in the mountains} I could try to find her if you are interested. They really had a rough time of things, probably even more than I know b/c she is pretty private.
Oh no, sorry to hear that. I don't know anyone who has had it - or whether you even get it in the UK? But I hope you get the right treatment sorted soon.
I was just reading the other day about a medical community a man with Lyme started. The community isn't working anymore but the site's still there. He started it precisely because of what you're going through. He went through it, too. But I can't remember the name of the site! Hold on!
just call her sheena. don't be afraid!
I WISH I knew of something that would help you. If I run into anyone or anything that might, you know I'll let you in on it. Good luck! (hugs)
In the meantime, you are incredibly inspiring. The way you stay so positive and are such a creative force in the world (especially for your childrens' benefit) while battling this disease is AWESOME.
good job putting it out there! hopefully it will end up being like 7 degrees of Kevin Bacon and someone will know someone and it will all come full circle..you look incredibly adorable if that helps! You could be the face of Lyme disease, on billboards everywhere, get paid millions and then you can see the best of the best! Then you could totally blog about it..;-) We're praying for you!
Oh Sheena, I'll be keeping my fingers crossed for you. I really hope you can get those dang little bugs outta your body!
Oh, how I wish I had the answer for you! I'll keep my ear to the ground for others who've battled lyme.
I want to be like you when I grow up...totally cute and happy, even when I feel like crap! I'd bet there's a big, pretty pitcher of homemade limeade on your totally awesome table that you built. ;>
It feels like dashed hopes, even to type this, as I have nothing to offer in the way of actual help. Only, my heart clenches to read this, and I can't imagine your trials and strength and bravery thus far, and all I can give is sloppy old sentiments. You can bet my ears will be pricked, though, and my eyes open, and I'll be back hastier than hasty if I see something, anything. Be strong, hang in there, somewhere, there's something, in that wild www, and in all those wild crazy hearts. *Molly (http://www.remedialeating.com)
Maybe get in touch with Liesl?:
http://lieslmade.wordpress.com/2009/08/31/are-you-weary-as-water/
I have done a bit of research on Lymes. We use homeopathy a lot. I know a couple of things I can share.
1.)is a line up that can be used as a precautionary level or in treating lymes: ledum 200C for day 1; hypericum 200C for the next three days; lymes disease nosode for 10 days after that. This can be repeated as much as needed and helped my sister who had lymes for years.
2.)ledum 1M had been the closest "cure" that I have found. There is a vet in Conneticut who wrote a paper on it. And how they have cured many animals with lymes using this remedy.
If homeopathy resonates with you and you'd like more leads on where to go with this, you can email me at earthmama101@yahoo.com
Good Luck!
:)Lisa
hey there :)
My friend got lyme disease while traveling in Germany a few years ago - it took them about a year to diagnose. He was having a lot of joint swelling and other issues. He was in the hospital for many weeks. 4? 6? A lot. He went home, where he had an in home nurse for the next 12 weeks. He didn't work. He didn't do anything but sleep, sleep, sleep. He lost a ton of weight and slowly got better. It's been probably 4 years since then. In that time he's gone to the Culinary Institute of America, and has become a great chef. He currently works 80+ hours a week. And has not had any re-occurances From what I understand once you have lyme disease it never really goes away - but it can get better. I don't know what kind of medications he was on. I don't know if he knows. He said he slept more than 15 hours a day. I'll see if I can get more info from him.
Good luck!
Have you visited mothering.com's health and healing forum? Definitely some Lyme's mamas on there, as well as some of the most amazing women who really know their stuff. http://www.mothering.com/discussions/showthread.php?t=742770
Definitely post a thread there and see if you can get some help.
I am right now going down the MS road, so I really have a lot of empathy for where you are.
Oh Sheena, I am so sorry to hear this and Im afraid I cant give any advice but please know that I will pray for you and pray for healing! You are just so lovely and I really appreciate your honesty and willingness to share. Your site is indeed very happy and fun but it is refreshing to all of us to hear your heart and know how we support and encourage you.
Best of luck with everything!
I LOVE the photos.
I don't know anything about it or have heard of anyone but I will keep my eyes peeled for you. I hope you find what you need.
Hmmmm ... no stories, just hugs for you and well wishes to get better soon.
I'll pass your blog entry to my husband to see if he knows anyone at Duke who treats Lyme. In the mean time, hang in there.
xoxo
I've recently stumbled upon your blog and am loving it. I enjoy your recipes and photos and bits of life. I don't know of anyone with Lyme disease, but have battled some health issues myself. I know how frustrating it is to feel like nothings working and your body isn't doing what you need/want it to do. hang in there. Hoping things get sorted out for you soon.
Sheena, you are my hero. I meant to comment on your other blog about this! I'm glad you posted here...it seems like you're getting some good advice, and we're all learning a little something in the process. Not only about the disease itself, but about keeping positive when things get tough. I don't know much, but I DID see something the other day out here in MA that made me giggle and think of you...I am SO going to take a picture and send it to you STAT! p.s. I just love love love your vans. I have them in gray, but I might need them in blue. Would you mind if we were twins?
I don't know anyone, but thinking of you and sending more positive thoughts your way! Hope this is over for you soon ~
wow, sheena, i am so impressed by your good attitude. it seems you are even able to keep lyme somewhat 'happy fun'. (although i know it is NOT at all. and i feel bad for your poor battling body!)
as for being able to help, i really hope that i can, but i'm not sure. i'm facebooking a friend that i know from the summer camp where i work- he had Lyme last year. will let you know when i reach him!
Gosh Sheena... I think that movie trailer that you put on here says a lot. We have some really good friends that have lymes. They were living in Conneticut and went on the ward campout... they all got Lyme's. Dad, Mom, two brothers, and mom was pregnant and the little girl has had it her whole life. They live in Alpine, UT now and I'm not sure if they have figured out what to do either. I know that they have been trying some stuff from Canada to try and help them. I'll see if they are getting anywhere, but I don't want to discourage you if they haven't had any luck with it either. I'll find out. I'm impressed with how positive you are. I know that sometimes it's so hard to stay positive when you are going through major medical problems like this. Hang in there. Pray like crazy.
I don't know anyone but I posted it on my blog. Good luck! Sending love and prayers your way. :)
Your positive outlook on handling this disease is very admirable. I'm hopeful the magic of blogland will lead you to the right answers and connections. Happy and fun is nice to read, but I appreciate you sharing this part of your life, too. Please keep us posted!
I wish I had something for you. I'm living in Connecticut right now (as in...you know what Lyme is named for, right? Lyme Connecticut.) All I know is...nobody can agree what it is. Good luck to you!!!!! If I can find anything, I'll be back.
Oh, grrrrl. How I wish I could wave my magic wand and make it all better. Alas, my wand broke a while ago, LOL. I have a nursing background, and so appreciate how it is to have a PICC line, etc etc.
I have no personal/profession knowledge of anyone who's overcome Lyme Disease. You likely have searched high and low on the internet ... but here's the CDC's site on Lyme. Every source of info I have consulted suggests Ceftriaxone (aka Rochephin) as the most efficacious treatment of Lyme.
Btw, you are quite right in assuming a positive attitude; in my experience, attitude makes a world of difference in a patient's response to/recovery from illness.
I wish you well ...
you are an inspiration now in a hundred and ONE ways! kudos to you for putting it out there - i see lots of good and helpful info is already flowing your way. like others here who wish you well but know nothing, i am on the lookout and will pass along any info and links i may stumble upon. best wishes to you!
this is a fellow blogger you also is battling with Lyme Disease and she recommends a book of a guy you actually beat the disease.
here is the website ...
http://lauren-lymedisease.blogspot.com/2009/03/very-very-late-book-review.html
Hi there, I was alerted to your blog via a google alert. Just wanted to say you are not alone. I am in the UK, I got bitten in 2004 and became ill with a host of strange problems but nobody could find what was wrong with me. 3 years later, after much research myself, I realised I had Lyme. Since then I have found many many other people in the same boat. My 2year treatment on oral pulsed antibiotics hasn't worked, I've had a year off and am going to start all over again. If anyone reading this is in Europe, there is a useful (large!) discussion group called eurolyme http://groups.yahoo.com/group/EuroLyme/ that may be of use to others in the same boat. My initial diagnosis was 'probably' fibromyalgia. How many other people think they have got a condition that is basically untreatable? Who knows?
I wish that I had some advice or suggestions for you, but I don't. I'm so sorry that you have to go through this. I can't even imagine how hard any of it must be. Please know that you're in my thoughts and my prayers and that I want so badly for you to be better.
I know hardly anything about Lyme disease. I'm about to check out that link!
Hi Sheena!
I remember you talking about this a little bit on your other blog. I am so sorry! I truly wish I could help out in any way, but unfortunately I can't. I'll be thinking and praying for you for SURE though.
I know this is a lame comment, but I just wanted you to know that I like you and care :)
all i can do is offer my prayer that you'll find some answers soon...
hugs to you!
xo
Your life sounds much like mine.
My husband has a rare foot deformity that wasn't treated at birth and causes him a lot of paid and limits his activity. Loads of doctors have seen him and have been baffled by him. He has had one surgery where they cut all his metatarsals, reset them with screws, wedged cadavar bones in and fixed ligaments. And it still didn't fix anything. So instead of searching for a cure, we have settled on searching for a life. We have just had to come to terms with it. And it has been hard, but we are over the worst. I think the realization is the worst. Once that is over, you can move on.
Good luck with your doctor. We did have one doctor who really cared. She really wanted to help. Doctors that care are few, but are why the medical field came to be.
I really wish I could be of some help. My prayers and thoughts are with you and your family. I hope you find the cure you're looking for.
You are a very positive individual and very inspirational.
Hello, My name is Whit Heeres. I’m 23 and I was diagnosed with Lyme 2 years ago after struggling with it for years before we finally got the right diagnosis. I had a Picc in my arm for months too and now have a part in my chest. I’m working with an amazing doctor in Louisiana (I live in Ohio) who is a lyme specialist. I’ve been told I have a pretty severe case of Lyme and as of next month I’ve been off work and normal life for 4 years because of the severity of my symptoms. Ahh.. But God is good and I’m on my way to getting better. ( I hope) I’ve done tons of study and talking with people and would love to share what I’ve learned with you and learn from you as well. Keep that positive attitude going girl!
hello! i have a friend who was diagnosed with lyme's years ago. she's doing wonderfully now, but getting the right specialist is key. here is her doc info:
I suggest a doctor that has Lyme Disease and is a specialist in treating it.
Here is my doctor:
Dr. S. Chandra Swami
701 NORTH HERMITAGE ROAD
HERMITAGE, PA 16148
(724) 981-3322
good luck!!
Hello- That really sucks- I did not someone who went through this and like you was misdiagnosed for FOUR years.
Anyway my husbands a Dr. and we are in a state close to yours so I will ask him about it.
Your photo montage makes me want to know you- SO cute.
Im proud of you for publishing that! I know there have been so many ups and downs with you and I am so happy that you havent given up or taking on a poor me attitude. Good for you Sheena. I will ask around and spread the word. I wish you all the best girl. :)
Here is some more info these family may offer more info on it. But this link is to the ksl website and the article
http://www.ksl.com/?nid=148&sid=6802687
We wish you the best of luck and you will be in our prayers.
this might help also
http://lymewarrior.blogspot.com/
I don't know if you have checked out Dr. Mercola yet. Maybe his advice will help you.
http://articles.mercola.com/sites/articles/archive/2000/07/23/bee-venom-lyme.aspx
http://articles.mercola.com/sites/articles/archive/2009/08/04/Dr-Klinghardts-Treatment-of-Lyme-Disease.aspx
http://www.underourskin.com/
Sheena I'm really sorry to hear this! I wish I knew of something or someone who could help. I'm afraid I don't, but if I happen to hear something, I will send it your way. You living an inspiring and healthy lifestyle & I'm sure you'll be better soon! Sending good thoughts your way! xo
Oh, I am so sorry to hear that. I actually had/have lyme. I treated it with natural meds + diet changes + yoga. It seems so small when I write it like that, however, the truth is it consumed my life for over 2 years and still does, actually.
The point is, there is life after lyme. There really is. At the time of my diagnosis, I had a 5 year old and 1.5 year old with the hope of having more children. When I got sick, I just wanted to live. I was so close to death, I really believe that. I had neuro symptoms for a long time and was told to go on anti depressants and anti anxieties to help with my "problems". The only doctor who would listen to me was a naturopath and thank God for her.
Now it is over 3 years later and while I still battle with symptoms, I have an arsenal to combat it.
Also, I just gave birth to my 3rd child 9 weeks ago.
Sorry this post is all over the place (newborn, 4 yr old, 8 yr old, and we just moved to a new state last week...) If you would like to chat, shoot me an email :)
"MY BLOG" Can you send me an email at sheenajibson at gmail dot com. I have some questions for you! thanks!!
I found your post through the bloggy land. Just wanted to share that I've had a few friends who were treated with Colloidal Silver and swear by its benefits. Good luck and my thoughts are with you!
Hi. I don't know anything about lyme disease, but I posted a link on my blog yesterday.
http://lanieree.blogspot.com/2010/03/h.html
HI! What an adorable Lime pic for Lyme. You're soo lucky..... it took me seventeen y ears of "adventures" to get diagnosed. I'm in recovery too... but no IV antibiotics for me, unfortunately.
My thougts for you are these- are you ebing treated for coinfection as well? your doc might not know that there are a bunch of hairy coinfections to look for/ treat also, and you can't really treat the Lyme bug without treating the tohers. Does he have you on a series of cyclic antibiotics, or jsut one? Dosage matters, of course. ARe you using the diagnostic paper Jemsek has posted, etc? not sure how you can contacct me if you really want some help there, but anything I can do... we've been there.. and two of my three kids have it, as it pased through the womb, so we're battling all fronts...
heatherbergevin at sc.rr.com if you want to chat. xo-HB
lol- word verf: watics as in WHAT? Ticks? DANG IT!
Hello, I just stumbled across your blog and wanted to let you know that I really feel for you! I dont have Lyme disease but I do have a PICC line for my annoying disease Chronic Sclerosing Osteomyelitis, this is my third PICC in 3 years and I'm hopefully having it pulled in a couple days (woohoo!) after 2 months of uber strong IV antibiotics, so draining as you probably know oh so well. Your photographic series/explanation made my day,it made me realize that I'm not alone in dealing with this while trying to remain positive and seeing the humor of it all while trying to treat a stubborn life altering illness soooo I really just had to let you know that. Wishing you the best of luck and sending positive healing thoughts your way. xoxo
P.S. I really wish someone would design a better looking picc cover, the white fishnet is soooo last year! ;)
My bro-inlaw has lyme...had it for years, but finally got the diagnosis last summer....he ended up giving it to my sister (i guess it is transmitted sexually and can be given to your kids). They found a doctor in Seattle....they fly back and forth every other month for treatments. She is a medical Doctor and treats them with a mix of antibiotics and a ton of homeopathics. The doctor herself had Lyme for years. She strictly treats Lyme patients and has had much success getting rid of it...for good. They feel like she's been an answer to much prayer and fasting. My sister has been so frustrated from the lack of knowledge out there. Anyhow, she has some stuff on her blog...
http://danielleandclayton.blogspot.com/
you could contact her if you're interested in her doctor.
Good luck.
I would love to hear back from you...I have 3 kids, 10 year old beautiful girl, 7 year old All boy, and a know it all 3 year old. Love them to pieces. We recently found out, after a year of being blown off by Dr's, that our son, 7, Jacob has Lyme. I am sick with worry of the unknown. We were fortunate enough to get a appointment with a Dr. Stricker in San Fran in two weeks. My son has had it for a year in April and has had 7 episodes in 8 weeks were he is runing high fevers and cannot walk. for a year he has comlained of leg pains and now its in his feet wrists and knees. I would love to chat to see what has worked for you. Right now he on oral antibiotics prescribed by his primary care who would love to sweep this under the rug. But I am a mama bear and know when things aren't right. My research led me to the Dr. Stricker and a friend led me to you. I live in Sacramento. My E-mail is ojmjordan@gmail.com I would love any input you have. Thanks so much, you have a beautiful blog and family. I too am a positive go getter, runner/now walker, mommy and loving wifey!! I am hoping that this E-mail finds you healthy and happy!!
I watched Under Our Skin last weekend and was horrified! I had absolutely NO idea about Lyme disease. So I've spent much of the week telling everyone I see about the film.
I'm glad to hear that things are improving for you.
My husband was just diagnosed with Lyme Disease. We are seeing a guy in Pocatello doing amazing hollistic remedies. Blood analysis, Chelation IV bags of Vit. C. If you need more info contact me...at Nattyseely@gmail.com
I see you are going to San Fran for something similar, but if Pocatello is closer and you get good or better results it's worth a shot, right?
Just diagnosed with Lyme last week and feeling overwhelmed with the idea of whats next. Happy I found this blog and looking forward to reading all the comments. Trying to stay strong as all my kids get tested next.
Dr chandra swami hermitage pa people fly in just to see him
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