posted
Greets, my name is Freethinker. Please don't confuse me with ``New Age'' Freethinkers, I am a traditional one, and I believe Jesus is my light. I hold a Degree in Networking and several certificates with Cisco and data processing. We build computers on the side and my candy dishes are filled with pieces parts, alas no candy o_~ I just wanted you to know I do not Baaaaah and I am not uneducated.
My story begins with myself and my sons attending a simple birthday party for my sons' friend, who lived in the country in Southern Illinois.
The party was held under a huge tree. Approximately, two weeks after the party, i was coming out of the bathroom with a towel on my head and body. My son gasped "what the heck is that on your back mom?" My life has never been the same since.
The tick had lodged below my left shoulder blade and was between a quarter/50cent piece in size. Mortified, i looked in the mirror in disbelief.
My son was freaking out and said he could get it off. He took a cigarette and laid it on the intruder for a minute, which seemed like an eternity. Accidentally he burned me, and i started to cry and he got frustrated and went into his room.
Still clinging there, gross and big as all get out, i sat weeping. Then all of a sudden i felt something hit my foot. Looking down, omG there it was, the culprit just smiling at me. It was so big you couldn't see its legs anymore. I estimate it was there over 2 weeks since the party. Since then, I have looked at pics and discovered it was a deer tick.
Wanting to torture and mutilate it, i simply picked it up in a tissue and a burial at sea was its destiny. I never thought once to have it tested. I have always heard of Lyme disease, but just dismissed the idea in a split second. I worked 40 hours a week and attended college full-time; i was so busy i never dreamed i would get so sick.
My bouts with Anxiety came about 2 weeks later after the initial bite. Being a widow and not having a partner to check my back, i never knew if i had the bullet rash or not. When the EMT came to rescue me, with the first attack, he said, "don't worry, you're not going to die, you just are having an anxiety attack." I told them at the hospital i had been bitten by a tick. They never tested me for the antibodies, not one time.
Over the next 4 years there were endless trips to the same hospital. I saw 10 different doctors and specialists. All testing came back I was A-ok. The last straw was: i had a bad anxiety attack, off to the hospital i went. Low and behold, there sat the same EMT that took me in the initial ambulance ride, 4 years earlier, at the nurse's desk! He asked me why was i there. I told him my symptoms, he glanced at the board and said, go in bed 4 so nonchalant, and condescending. I am sure he remembered me.
I heard the nurse say, why are you sitting there to him, and who came in. He said he put someone in bed 4. There were 3 other beds with other people in them. I sat there for about an hour. I saw the nurses helping the other people in the beds. NOT ONE PERSON CAME to me and even asked how i was, let alone take a vital. I was moaning and crying. I thought i was dying. I actually heard myself asking for ``someone to help me.''
Fed up, i called my son and told him to come and get me NOW. When i left that hospital, NOT ONE PERSON SAID anything to me, like hey lady where are you going....nothing, nada. They just let me walk straight out of there.
I drove myself down to the next town's hospital. I had blurry vision, motion sick, lights hurt my head, sick stomach, shaking, tingling in my hands and feet, one of my pupils were bigger then the other, and other numerous symptoms. I was just so sick.
They were all so nice to me; the sweet little aid even asked me if i needed a glass of water. What a difference this hospital was. They straight away got me a wheelchair and whisked me off to a private room. The doctor came in, and i noticed he walked with a limp and was paralyzed with one hand. I believe he also had a glass eye.
He was soft spoken and asked me my symptoms and ordered a simple blood test. I dozed on and off over the next several hours, and when the results came back, he said i have the Lyme disease antibodies in my blood. He said to be sure i will order a Lyme Panel and then prescribed Doxycycline for 42 days. 100 mg tabs.
During the first 3 to 4 days after taking the Doxy, i was back to my old self! WOW, i did have Lyme and now i am so much better! Miraculously i was healed, like someone anointed me on the head and i was cured.
I waited 7 days for the lab results. Since he wasn't my primary care doctor, i had trouble getting the results from him. I never get sick so i didn't have a primary doctor. Finally, i got one of his nurses in his office to tell me the test came back negative.
There i sat in disbelief. I had all the symptoms, except the bells' palsy. I discontinued the Doxycycline after all; the test came back negative for Lyme. My little voice told me to seek more help, so the very next day after i stopped the doxy, i went to a rural health care facility and saw another doctor. She told me, the same thing has happened to her husband, and why did i stop the Doxycycline? She told me the testing is bunk, and her and her husband had to pay out of pocket to have another test done for him, and it was positive.
I went back on the Doxycycline that day. Wow, someone who knows that I am not nuts! July 11, 2007 was my last day of doxy. Here i was thinking i am fine now and all is well in my little world. That was far from the truth.
On August 7th, 2007 i was at work when i had a major Anxiety attack and back to the hospital where they found the antibodies i went. I told them about my recent bout with Lyme and they merely dismissed it and told me i had "heat exhaustion"! I have had 5 or so attacks since. I can feel this movement, scratching if you will, in my head and then the anxiety/panic hits me, and hits me hard. I twitch, feel crawling, terrible headaches, tingling hands and feet, lights bother me, and o so much more, why go on, you all know.
I had an appointment with a Neurologist August 8th for a sleeping disorder i have, so i decided to tell him about the Lyme antibodies in my blood and he prescribed a 21 day supply of Doxy for me. 100 mg tabs. I am into day 12 with them and I still am having all the symptoms.
So back to the rural primary doctor i went. This time i saw the gentleman that practices with the doctor i initially saw. He said to me; let's fix you from having the anxiety attacks in the first place. Here is some "free" Lexapro. Take 10 milligrams per day, and i will see you in 3 weeks. I told him i was going to see a Neurologist the next day.
As i was leaving his office, i thought to myself....they are just going to mask my attacks and that's not right. It just didn't settle right with me.
Upon seeing the Neurologist, the first words he said to me was, "did your primary give you a HAPPY PILL?" i was just stunned, i sat there like a deer in the headlights. I meekly stuttered a yes. Then he said, it would help the scratching in my head and he would like me to take 20 milligrams the first week and then up it to 30 milligrams the 2nd week, but Medicaid (Illinois state aid) would only cover 20 milligrams and he would see to it i would get the other 10 milligrams in samples from him. I also told him my primary ordered another Lyme panel. He asked me, ``Why did you have another Lyme test, In 3rd World countries we don't have any testing, we rely on what the patient tells us.''
And wouldn't you know it, as I was checking out of his office the receptionist told me that the primary man doctor and the Neurologist are good `ol buddies and they used to work together for years.
I cried all the way back to my office and then some. I am sorry but i would not give that Lexapro to my dog, let alone take it myself! It would just mask my problems, they think i am a sheep, and that is far, FAR from the truth.
The next day, i wasn't crying anymore.....I WAS MAD! So very MAD!
I got on the internet and found a vast supply of information and started making phone calls and emails with others like me. That is how i came to you today.
I found out by calling The State of Illinois, that there were only 110 documented cases of Lyme in Illinois in 2006. And only 1 case in my county! I can not wait to go back to them both and ask them, ``Just how many Lyme patients are you treating now?'' I really hope they try to lie to me. I am sure others are being swept under the rug too. This is such a travesty to mankind. Hey I thought they took an oath??? O wouldn't it be different if it was one of their loved ones or themselves being treated in this manner?
I am happy to say, I found such a sweet angel, named Sarah from a support group based in St. Louis, Mo. I am so very happy i have found answers, and i can never repay her kindness.
I am a strong woman who had just been enlightened, and I will be HEARD!
WE WILL BE HEARD!
Thank you so much for reading my lengthy story.
May God Bless you and your families.
Dottie L. Heffron Southern Illinois
*Amended Saturday August 25, 2007 - I am really having a bad head day today and shaking, I am so very sick. I suspect my 21 year old has some sort of Lyme too, as he is sick.
posted
Sorry to hear like many you have to suffer so long undiagnosed. Hopefully, you have found an LLMD to treat you.
Posts: 984 | From San Diego | Registered: Nov 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Dottie, your story sounds so similar to mine. My heart goes out to you.
You have come to the right place. I check in here daily for support, even if it's just to read through.
I've been told I'm nuts and have been given the "I don't care" routine many times. One doctor even tried to put me on Risperdal, which is an anti-psychosis drug, because I couldn't walk and described the tick bite as a "burning poison" to him.
I see no other doctor but my LLMD now. If I do need the ER I just matter of factly tell them I have chronic Lyme disease and am suffering from an exacerbation of symptoms (or my husband or sister do, if I'm unable to communicate).
The last time I went to the ER, about 6 months ago, they were actually very kind and dealt with my pain and muscle spasms in a professional manner.
The time before that, about a year ago, I was screaming in agony and was told by the nurse and doctor to stop my "behavior" or they would wheel me to the parking lot. They kept telling me to be quiet rather than trying to help me with my pain.
To shut me up, they gave me such a powerful dose of narcotics that I nearly stopped breathing. I learned of it later when my sister told me about it. I had begged her in a phone call to come to the hospital (at 4 a.m.) because I was afraid they would kill me. I was truly afraid of them.
I reported this "nurse" and "doctor" to the president of the hospital and got a phone call. I was told that there would be disciplinary action but I would not be told what it would be. I still wonder what kind of trouble I got the nurse and doctor into. I hope lots!
Well, take care and welcome!
Sincerely, lymelady (Julie)
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!WELCOME*)!*)! !*)!*)*!)!*)!
WELCOME*)!*)!*)!! !*)!*)*!)!*)!
WELCOME*)!*)!*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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quote:Originally posted by CaliforniaLyme: *)!*)! !*)!*)*!)!*)!
*)!*)!*)!*)!*)! !*)!*)*!)!*)!
Hey Sarah! You're going to wear those keys out one day!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
welcome dottie to the board. thx for sharing your story; so much like each of our own.
best wishes on your lyme journey! i believe you received my newbie package of 61 pages, etc. if you didn't, send me a private message asking for me to send it to you ok.
PMs are the 2 people standing together icon to right of MY name.
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You JUST need to find a real deal LLMD and get proper treatment,,,I see a VERY bright future for you!!!
Yes I do,,,you shall overcome!! Long bumpy road but my vision sees you standing at the end of it waving back at us,,,encouraging others!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
As I was reading your story, I thought it would be a good idea if you copy and pasted it on the Oprah Web site for lyme stories or problems with Health Care.
Sorry, I don't recall where that web site is for Oprah on lyme stories and I couldn't find it last time I was there.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Glad to hear you're on the right track now. I'm sorry for all you had to go through to get here.
Like you, when I think back to the way some ducks have treated me (worse than S**t), I feel sick with rage.
I remember sitting in the hospital waiting room once for over 6 hours-- bawling and begging for morphine-- while the nurse shushed me. I saw a man with a sprained finger, who came in after me, leave the hospital before I was even seen!
Some ducks are merely incompetent, but there are a handful who are downright cruel.
I hope you have found an LLMD by now. Good luck. Posts: 390 | From Oakland, CA | Registered: May 2007
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bettyg
Unregistered
posted
oprah direct link can be found reading in activism; i've finally got my story together from cutting/pasting all over the place to put it on too. if i find it first TOMORROW, i'll post it here, otherwise, someone please paste it here. thanks!
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
You will repay the kindness of those who helped you by helping others. Adding your voice to those who are speaking out about Lyme is a great way.
Thanks for your resolve.
Take care,
Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
just don, those words are so true, and i will make them listen, somehow-someway! I have found a good doctor, 5 hours away, now the problem is coming up with the money....*hugs* to you.
EllieK, i like you, am just sick with rage over the way we are being treated. I hope you are getting better help now, and are feeling better.
Kam & bettyg - Oprah is such a good idea! tyty...when i went in to tell my boss Monday how truely sick i am and to show her all the information i have on what is happening...the first words she said to me was, "do you want to collect disability?" omG, this ticked me off! lol...sorry for the pun. Can you tell i feel better today??? she wouldn't even look at the folder with all the information. My reply was, o hell no, i just want to feel better! She is a devoted Oprah fan and if, just if Oprah-fellow Illinoian, would post or omG, even have a few of us on...she would change her tune i'd bet. People do see Oprah as some media God, so who knows. I hope you can find the link, i will search for it also.
Shaz, i will think of your sweet words all day! They are so uplifting and it just makes me stronger, because if i can help just one person not go through this travesty, i would have done well. I believe Lyme testing should be a standard test, like people test for their Cholesterol, etc. I also believe caught in the early stages, treatment is so much more effective and there is a better chance to heal.
Name of Support Group: Lyme Disease Support Group on Oprah Contact Person for this Group: Sandy Tusing Contact Person Telephone: Contact Person E-Mail: [email protected]
City: Trenton State or Province: Ohio Country: USA Regions of your state / province served by this group (i.e. south-east Pennsylvania): ALL Your Name: Sandy Tusing Your E-Mail Address: [email protected]
Comments: Our mission on the Oprah site is to increase awareness of Lyme Disease to the medical community, which will lead to proper diagnosis and treatment. Education is key to the future of research and treatment.
I went and signed up only to get this message:
Oprah.com Online Community Update We have exciting news! Oprah.com is launching brand new Message Boards, Member Blogs, Private Messaging and more!
In an effort to prepare for these new features, the Message Boards will be temporarily offline within the next few weeks. Please be aware that current posts will not be transferred to the new Message Boards. If you wish to keep a record of your posts, we recommend that you print them out.
With the new and improved Oprah.com Online Community it'll be easier than ever to share your stories, post your thoughts and connect with women around the world. We look forward to your continued participation!
That is ok with me, i can wait to post my story!
And if i can't get her to listen that way, if i have to i will drive the 4 hours North to her studio(been there b4), don a tick suit and hold a sign until she will do another show on Lyme and related illnesses....lol...
you know the old adage: Where there's a will...there's a way!
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!
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Thank you so much for the nice greets everyone. It is so nice to meet you, but i wish it was under better circumstances.![[Smile]](smile.gif)
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I'm sorry for all you had to go through to get here.![[spinning smile]](graemlins/spinsmile.gif)
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over the way we are being treated. I hope you are getting better help now, and are feeling better.![[group hug]](graemlins/grouphug.gif)
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