I just wanted to say hello and to just thank you all for this wonderful site full of information.
My name is Kimberly and I live in Missouri.
In 2001 I was bit by a tiny tick and within a short time, developed what I now know as a typical EM rash.
I had no idea at the time what that meant.
After a few months, I developed joint pain in my knees and hips and severe fatigue.
It was only after my mother saw an article in a magazine on Lyme and the rashes that she showed me, that caused me to go to the doctor where the doctor gave me a 7 day prescription of a doxycycline.
I **thought I was cured. haha
Anyways, that started on what I now know as my debilitating spiral into chronic lyme.
Over the years, I have develped numerous complaints, gone thru lots of tests and nothing has ever shown up and no one ever connected that any of this was related to lyme or to each other.
This last year after being basically bedridden for much of the spring and summer and having no strength to do much, we sold off my beloved dairy goat herd which I had been trying to raise to start an organic goat milk dairy because I could not possible do the work involved.
I couldn't even keep up our garden this last year.
We were really getting worried as not only was having joint pain and fatigue but then I started having neurolgical, stroke like symptoms and some heart issues.
I am only 35!
My husband finally said "You have to see a doctor".
We did and the doc tested for RA, MS, Lupus, and few other things...all negative but what he did suspect was lyme.
So I told him my story of having had lyme.
He thought perhaps I got rebit and reinfected or that it exacerbated my symptoms but once I was told that, I started digging and from what I can tell, for years now I have been dealing with this demon like bacteria in different systems of my body and I didn't even know it.
What he gave me was a script for a ten day doxycycline for this coming spring incase I get bit again but things have gotten worse even afer I started a very aggressive natural and herbal therapy in October.
In December I started having excruciating neck and back pain and now the numbness and tingling in my face and arms has started again.
Since at this time, we have no medical insurance, I'm considering the vet meds if I need to go to long term antibiotics.
I've read the thread and that was encouraging to me. If anyone has any new information regarding that I would so appreciate it.
I'm also very open to natural therapies and treatments.
I had thought what I was doing was working but now, I'm afraid it's not.
I don't want to be so old and crippled!
Anyways, thank you all for listening. Hope this wasn't too long.
Blessings,
Kimberly in MO
[ 20. January 2008, 07:49 PM: Message edited by: KLewis ]
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Welcome aboard!!!
So sorry you NEED to be here but the companies FINE!!!!
If possible head your car south to the BIG "S" city in your FINE state and see a real deal LLMD AND get well!!
Sell something, have someone get a second job,,,do what ever is necessary,,,GET WELL!!!
But mostly just WELCOME from--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Welcome to the board.
Lyme isn't easy to get rid of.....if it was we wouldn't all be here.
You really need to find a Lyme Literate Medical Doctor.
You may also have co-infections.
Hang in there. You are in very good company.
Also, if you don't mind....
A lot of members here have difficulty in reading text that isn't broken up
Every sentence or two. That would be very helpful for a lot of us.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
welcome Kimberly, and welcome to the board; you will learn a lot of info, get llmd..lyme literate md info, SUPPORT when you really need it, and much more .... friendships of people who understand 100% what you are going thru!
hopefully, you received my newbie package ..overwhelming.
i'll send you the best in MISSOURI info! glad you found us!~
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posted
Dear Kimberly, I live in Kansas and I'm treated in Mo. You have the best Dr.right there in Mo. My husband went to her and is now back to work after 2 yrs of treatment. My daughter (13)and I just started our treatment. We live with good days and bad days.It's very hard financially, but we get by.Let me know if your interested in more info. Anny out
Posts: 2 | From Olathe, Kansas | Registered: Jan 2008
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posted
okay....I think I am getting the line thing...
Sorry my first post was so bad.
I didn't know how it was going to look and was having a terrible time typing it anyways.
Blessings, Kimberly
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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bettyg
Unregistered
posted
quote:Originally posted by KLewis:
Thank you Betty G. for the information on how much and the like.
That's good to know....we may really have to sell something but if he can help me, it would be worth it.
We have spent quite a bit of out of pocket on expensive tests and visits to specialist to no avail though and it's been discouraging.
Thank you all for allowing me here.
Kimberly in MO
Kimberly, you are most welcome; ALL are welcome here except:
--the troll/troublemakers/SPAMMERS!
DUCKS are:
** infectious drs. who do NOT believe chronic lyme exists;
** refuse to treat us,
*** jeopardize our lives by not giving us STRONG ENOUGH ANTIOBIOTICS AND LONG ENOUGH to kill off the spirochetes in our bodies!
kimberly, you will learn here also: NO ONE TREATMENT is the right treatment whether it is:
antibiotics, herbs/supplements, rife, HBO oxygen tank, and ALL other alternative methods!
kimberly, have you gotten the WRITTEN MEDICAL RECORDS FILE COPIES of all drs. you've seen, ALL x-rays/mris/catscans, LABS, etc.?? it will be needed to do big Q/A for dr. c in missouri
our local clinic charges $15 for it; $20 for hospital records.
now because i have SO MANY DR. APPTS. YEARLY, they charge me $15/year. i always learn things in my records they never told me personally.
you can use the 6 wks. on becoming familiar with dr. b's 05 lyme treatment guidelines, ILADS..intl. lyme associated diseases society guidelines, OUR LLMDS!
printing out PREPARING FOR 1ST LLMD APPOINTMENT!
check with your insurance company to see if they are ON LIST OF DRS. YOU CAN SEE OR NOT; or if they will reimburse you anything for costs involved!
warning: if you are asked to sign a OPTED OUT OF MEDICARE FORM, that means these 2 things:
1. your llmd will NOT submit any bills to medicare;
2. because MEDICARE DOESN'T SUBMIT "I WILL NOT PAY THIS AMOUNT" form, you can NOT submit to your 2nd insurance co, example, bcbs!!
i went thru 18 months of hell sending at least 300-400 pages of my records trying to be approved by bcbs!
took them 18 months to finally say this where 1 of their employees said a copy of the OPTED OUT OF MEDICARE FORM WAS GOOD ENOUGH FOR THEM to pay from on their share!
i involved IOWA INSURANCE COMMISSIONER'S ATTORNEY AS WELL; as least they got more then me, and I had to keep pursuing it with them for answers! .
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-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The BESTEST Doc in the West is in Missouri- he is excellent-!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! You are lucky to be near him- Nice to meet you- Best wishes, Sarah from CA
-------------------- 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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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Welcome Kimberly,
You're in the right place. I've been coming here since 2004 and this site has been an absolute lifeline for me.
Glad you're here!!!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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remember to write questions down to bring with you.
also if your husband is going have him write some questions down too.
let us know how you make out, mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Thank you mtree... I am already so grateful for the support here.
It is a blessing.
I think my hubby too has read of some of what you all have been going thru and it has helped him to see that what all I have been thru is "normal" for a lymie and I'm not a hypocondriac. Poor guy.
He really has been wonderful but it has been hard on him too.
Dr. C's office called a while ago and my appointment is moved up to next Thursday.
What I was wondering is if you all could help me.... I had thought to write down some questions and things to ask him but I am having some really "brain foggy" days...
Usually I write down stuff and forget them at home or forget to take them out and only remember them later...
So can you all help me think of questions that I need to ask... I mean, you've been there. What all should I ask about? At $460 for 90 minutes, I need to make the best of it.
Thank you all so much.
Blessings, Kimberly in MO
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Kim, see the gods are with you. Dr C will give you many handouts. Many on lyme & company and also tons of info on natural stuff to do to help your body fight this illness.
I'm glad to know you are open to other ways, besides just taking a few abx and think it is all going to be good today.
Abx combined with you doing and giving your body extra is a great beginning. Just know the road is not easy and it sure as heck isn't cheap.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Welcome from a fellow newbie & patient of Dr. C. You do have one of the most thorough Docs I've EVER met.
You should get your big questionnaire packet from Dr. C. soon. Even if you are having trouble coming up with questions, the questionnaires he provides will give him tons of info.
Be prepared for what seems an overwhelming amount of info. from Dr. C. He has tons of handouts & will tell you to take them home & read them over the next few weeks. You will likely need all that time to digest it all.
Be sure to tell him if you feel you want to go in a particular direction with your treatment. Some folks want him to tell them exactly what they should do. They're not used to his methods.
If you don't know where to go with your treatment, ask him what he would do if he were you. That is helpful. He is very open & easy to talk to.
Posts: 81 | From Iowa | Registered: May 2007
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posted
Thank you MaryL and Lymetoo for the welcome and other information
I'm still nervous....I'm stressing that Dr. C will think I'm crazy too and I won't get help again.
That is really neat...I've not met another Kimberly Lewis, lol. What is her middle initial? Mine is L. That w ould be too funny if it were the same. I have met alot of Kimberly Ann's though.
I am freezing t oday... This morning it was 1*. My hands are not working and my typing it terrible.
thank you again for the welcome! Blessings, Kimberly in MO
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
You WANT to feel better Kim? I have a daughter named Kim also!! Besides your cold weathr,trade ya,,,,it was 20 below here this morning.
Just a lLITTLE bit north it was 26 below AND those poor folks who live in International Falls Minnesota(Icebox of the nation) it said 31 below THERE!!!
So a LITTLE comfort in knowing it can ALWAYS be colder on the other side of the fence.
None the less,,,"I" had the same fear you do,,,that after traveling,still NOT believed. BELIEVE THIS!!!!It aint gonna happen HERE!!
I have talked tons of people into going THERE!! They ALL had the very same fear,,,IT DIDNT HAPPEN!!!
"IF" you are the FIRST,,,,you automaticly qualify for the Guiness book of wonders,LOL. lets say the chances are slim AND none!!!
Your doing the "RIGHT" thing for YOU,,,march on!!! Be prepared for a doctor visit of which you have NEVER before known!!! HOPE and results are ALL that matters!! IB--just don--
OH PS,,,ask before you do this,,but take a tape recorder along and ASK if you can tape the visit so you DONT FORGET the wealth of info you might otherwise forget.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Hi Kimberly, I'm new too, and your story sounds really similar to mine. I'm from central CA, but now living in Utah for the last 5 years. I believe I was infected with Lyme in 2000 during a camping trip in the Sierras.
I got a terribe flu-like illness, and 2 weeks later I had a seizure, or mini-stroke (TIA) and neuro symptoms started a few days after that. I was tested for everything under the sun like you; MS, Lupus, ALS, etc.
I was found to have thyroid cancer and was treated for that, but that doesn't even begin to account for all of my ongoing symptoms. I was so disgusted with medical community I just gave up a couple of years ago, but a visit with my eye doctor convinced me to investigate chronic Lyme.
I woke up one day with literally half of my eye a scarlet red color. My eye doc diagnosed me with "episcleritis" an autoimmune, arthritis, or Lyme disease condition. I do have arthritis, which started suddenly with my mystery illness, and I have many symptoms of Lupus. I'm thinkin' Lyme is a very real possibility for me. I just need to find an LLMD.
I'm grateful for this site and for the experience of others we can learn from. Good luck.
Patti
Posts: 27 | From Utah | Registered: Jan 2008
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There are a lot of threads here on alternative treatments though, such as the buher and the cowden. I advise you to do a lot of research on the two and see which one would be better for you, as a lot of people have felt better on them. : ) GOOD LUCK
Posts: 370 | From NJ | Registered: Dec 2007
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posted
HI Patti, I so sorry that you have this disease but I am glad you are here.
Just since I have been here and learned of these wonderful and caring people, who are also suffering, it makes life easier somehow.
This board is truly a blessing.
Your story does sound similiar.
When I first started having the neuro symptoms, I did some investigating.... looking for what had nuero with the joint and fatigue stuff as the neuro really threw me for a loop.
what I found out was that my "episodes" were classic TIA's.
I'd never heard of such a thing but I also explained what was happening to one of my friends and she used to be an EMT and she said, "Kimberly, it really sounds like a mini stoke."
Ir really scared me and it happened a few times in a week or so.
I've only had one other "episode" like that since then but other "neuro" stuff continues to pop up.
My appointment with the LLMD is tomorrow at 7am so we are leaving this afternoon to drive down there.
I'm excited, scared and yet hopeful.
I pray someone knows of a LLMD near you, Patti where you can go and get help too.
Blessings, Kimberly in MO
Posts: 41 | From Brookfield, MO | Registered: Jan 2008
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posted
i'm a newbie, too, and have been learning a lot from all of you on this gr8 forum. i do not live in mo., but would like to contact dr. c's office to c if i can get one of his informational packets. can someone email me w/ his name and number? thanks--
-------------------- grape
*DX w/ MS March 1987 *Tested + for several lyme bands and erlichea July 2007 *Full Cowden protocol 7/07 - 4/08 *2000mg tetracycline since May 2008 Posts: 18 | From maryland | Registered: Jan 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Welcome to all of you! You have found the best place for help and support! I believe that this site and the people on it have saved my life!
Please feel free to ask as many questions as you need to.
I believe under newbie links in medical or what bettyg so graciously sends to you there is a section on making the most of your llmd appointment- I will see if I can find it. It will help you!
Melissa Posts: 3905 | From USA | Registered: May 2007
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