------------------
But wanted to say "welcome"!
Let us know if we can help you in any way... ok?
Here is a link to keep you busy for a while.
Hope you feel better soon!
By the way...
TONS of folks who were diagnosed with MS actually have Lyme...
And it doesn't matter where they live. Seems doctors everywhere were not paying attention when they handed out brains... and missed the boat.
So you are NOT alone in the bad diagnosis.
Glad you found your way here.
I hope you are on the road to recovery soon.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
How to Search Courtesy of Danq
LymeNet Links for New Members
Newbie's Lingo
Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M
Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B
Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!
Labs
MDL
Igenex Labs
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests
Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)
Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction
Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Legal Help
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... Ten Points Regarding Mg and Lyme Disease
I have plenty to read for awhile. I appreciate the dry wit as well. I need something to get my mind to relax once in awhile.
My neuro told me that there's no lyme in MN.
His words: "It's very unlikely", and "I doubt it".
My hubby and I make jokes about it.
Take care, ya'll --Kathy
"My neuro told me that there's no lyme in MN."
YIPPEE!!!
I get to say my FAVORITE saying... which I haven't said in a LONG while!
Thank you for allowing me the pleasure!
`````````````````````````````````````````
I would rather shoot myself in the foot than go to a neurologist for Lyme.
And...
I would rather shoot myself in BOTH feet than go to an Infectious Disease duck (IDiot) for Lyme!
``````````````````````````````````````````
What a nice way to start out a Monday morning...
tee hee hee...
Have you been tested by Igenex? (www.igenex.com)
My son was seen at Children's Hospital in St. Paul by an ID, GI, endocrinologist, neurologist and all said that he was fine.
A neurosurgeon at Gillette Children's suggested Lyme testing after he evaluated Jordan.
The ID refused to test for Lyme, Babesia, and Bartonella. Both Jordan and Jake have tested positive by PCR for these illnesses when they were tested by Dr. Jones in CT.
They now see Dr. C in Missouri. This summer they tested positive for hypercoagulation and hormone deficiencies.
I have heard so many stories of people in Minnesota with Lyme, but no doctors to treat chronic Lyme.
Check out Dr. C's website:
www.drcharlescrist.com
Email me if you want to talk by phone.
------------------
Welcome!
I am a 5 year vet to this disease in the state that has proclaimed that we do not have it here! I have done so much advocate work, speaking, mailing, talking, writing and interviews in this state and yet, some bozo says "we don't have it here"!
I myself have an extensive history of trying to find help in Minnesota. 31 ducks (quacks)who said we don't have it here and 2 real doctor have treated me.
MS...be very cautious! I have a neighbor who was diagnosed with MS last October. His wife came to me because she thought that I had went through some of the same stuff that Gale was going through....He went to see Dr. C in Missouri and he tested positive for Lyme! It is not MS, the death sentance that they like to scare people with! Gale has Lyme and it is treatable and he has been doing really well!
I was also told that it was possible MS, Lupus, Fibro, CFS, "mental", you name it. I was told dozens of times that "we do not have it here". I was to stubborn to believe that I became sick over night and it was one of those diseases. I was right!
I live in the central part of the state. I can name off the top of my head 30+ people in a radius of 25 miles who have diagnosed Lyme Disease. A couple of them were diagnosed right away because of the bulleyes, but only given a couple weeks of antibiotics and they now live with "Post Lyme Syndrome". A number of them have traveled to Missouri and have gotten some serious help. Some say they cannot afford it and suffer. It is not worth it!
My point is please investigate this further! e mail me, I would love to give you some information, talk to you, give you encouragement because there is help for this disease! You just need to be treated and tested in the proper labs!
Keep on searching! Keep on asking and you will find the answers!
Janell
These days I'm feeling what I affectionately call my "lyme stupidity"
I forget names and places, etc. The other day, while driving, I suddenly didn't recognize the road/landmarks. (I was very near my home--lasted only a few heart-pounding seconds luckily)
Anyway, my fear is that my neuro is correct in diagnosing me with ms, but a nagging little voice in my mind keeps me doubting it. Now that my son is having similar symptoms, I am considering having Dr C take a whack at it. Couldn't hurt.
I feel bad about the people who want to see him, but can't afford it, myself included.
However, when I set my mind to something I usually follow through. (At least I used to)
I'll find a way, for my son's sake.
Thanks again, all of you. You're angels.
Kathy
Sorry for the late night goofiness of my first post.
This disease is 1,000,000 times underrated. I dont know how many times I tell people that I have this and they say "Well thats no problem, leave it alone and it will go away on its own" Even from so called health professionals and lay people alike. The only way it goes away on its own is you die from it, and you do go away.
I guess the real truth really hit home when I read extensively on the lyme memorial page. Way too many people there. This is SERIOUS and deserves serious measures to help yourself and probably your son.
You NEED to read Dr C.'s website and get a feel for what he thinks, treating people as individuals. You AND your husband should or could do this together. Talk about this for 5 minutes, come to the obvious conclusion, talk to a couple people here if you really feel the need, AND MAKE THE CALL "TOMMORROW" for an appointment asap and GO.
Excuses dont cut the mustard here. Next week is one more week of the future gone. You will be mailed handouts and tons of info from there office and you will easily see the URGENT need to get there in a reasonable and measured time frame. Dont worry, probably wont be this week or next but schedule and GO!!!
MS- Dr. C has experience in BOTH areas so who better to see for his opinion.
Excuses- #1 Its too far to go! How far is too far for your health sake? He has patients come to him from all over the world. How far is that?
#2 Cant afford it! Cant afford not to, cut someplace else, not here!!! Weak excuse at that.
#3 What if he agrees with my dx already. Cant find out without GOING there. And your son? He alone is worth the trip? No? Yes?
Have you figured out that maybe I am not going to give up on this one till you post your appt. date and time, unless thats TOO confidential for you.
Just post back with your heads up info. We are a 'Family' here and we act like one, can you tell?
Yesterday would be a good day. By the way, his office opens at 8 or 9 AM I think? HINT HINT!!!
--just don--
[This message has been edited by just don (edited 05 October 2004).]
I am so sorry that you are dealing with this. I too was told that I had MS from a neurologist. Then I listened to a good friend that suggested that I go to a LLMD (Lyme Literate Medical Doctor). I was tested positive for Lyme and Erlichiosis and others that are too much to mention right now but I will post later.
My husband is giving me two bacillian injections a week for now. The doctor will most likely be adding some oral antibotics when I see him again.
Also, just yesterday we had to take our dog to the vet and he suggested that I take him to the animal hospital. So I did. The vet ran some blood tests and he was positive for Lyme. He was so sick. It happened so fast. We had to put him down. I miss him so much already.
Anyway, the vet told my husband that 1 out of 5 animals that come through his office tests positive for Lyme. That frightened me. We have an elementary school in our back yard. Lyme is out there and it doesn't play favorites when it comes to when it is. Please persue getting tested for Lyme. It frightened me to see our poor dog get sick so quick. I thought "that could have been me".
I am very sick but am feeling better from the first time I was diagnosed.
I apologize for this post being so unorganized. I am just typing was my mind remembers at the time.
Anyway, when I first went to see about my problem, I had numbness in both legs and feet, short term memory loss, my MRI showed white lesions on my brain and spine and other symptoms that I can't remember.
Good luck and take care.
Maria
When a neuro dx me 3 yrs ago with ms, my life fell apart. My lyme titer was neg. so he quickly diagnosed ms. He begrudgingly agreed to a pcr at my request, which also was neg. Boy, did I get a lot of "I told you so's". I've always thought he was an ass. My feet and hands were numb, I had brain fog, and a few white brain lesions. I also had lesions on my cervical spine.(neck), and had abnormal reflexes.(legs)
I recall a time when I was 12, just getting over a bad sinus infection with Amoxicillin--my diaphragm felt like it didn't work--like all of a sudden-thought I would suffocate. Never did see a doctor. My folks were scaredy-cats when it came to doctor visits.Really scary for me, though. Now I read that can happen with lyme.
I'm glad to know that you're being treated properly. Hope and pray for a complete cure for you. I am sure you were relieved to be told it was not ms, but lyme. I would be also.
I am so sorry about your dog. I would miss my pets too. It's especially hard to lose those who love us so unconditionally.
God Bless and take care, Kathy
[This message has been edited by kitsicox (edited 05 October 2004).]
After many titers of negative results, I finally had a Western Blot that was positive, tested in New York. It was after the positive test that they did a PCR on me here in Minnesota and another Western Blot, sent to the Mayo and a ELISA and guess what, they were all negative!
That made it even more difficult to get treatment in MN!
They cannot rely on the test results only! They need to consider their failure rate, the strains they are looking for and the patients sympotms! That is how our wonderful Dr. C takes a look at this picture....the whole picture!
Keep on pursuing this. I am willing to bet that it is Lyme.
I know of 3 patients of Dr. C's, who I referred to him, who were diagnosed with MS. Guess what. In all 3 cases, they tested positive for Lyme....makes one wonder!
Janell
You've renewed my hope. Now I just need to get up the nerve to risk seeing Dr C.
I looked at mapquest--it would be about a 10 hour drive from St Paul to Springfield, MO. Am considering all transportation options. Driving seems most ideal-nice to have your own car in another city.
Thanks to all of you!
Love, Kathy
I have just sent to via cyber space, all of the courage and nerve you will need to go see him! That is all taken care of for you!
It is an easy, beautiful drive. Branson is only 40 miles away and that is where I always stay. The rooms are so reasonable, the area beautiful and it is just ideal!
So, all you have left to do is pick up the phone and make the call. It truly was the call that changed my life. I have a true angel to thank for that, just don....he was the one who convinced me to go. He saved my life!
Make the call! You will be impressed with their personal care and their knowledge of this disease!
Janell
I've already got plans in the works to see Dr C. My 17 yr old is kind of excited about the possibility of re-gaining his health, and I am also.
Funny thing, a few weeks ago I had a dream about my mother. (I nursed her through terminal cancer 5 yrs ago). Anyway, in the dream, we were chatting together in heaven, and I told her about my chronic illness and she told me very clearly, "Before you see Crist, there will be a new treatment for it".
I didn't know anyone by that name, and thought it was just another of my weird dreams.
Of course, I got goosebumps when I logged onto this site and saw Dr C's name. My jaw dropped. Could it be(??)
I know it sounds really strange. Hopefully the message will become more clear to me.
My sincere thanks to all of you-you're the best!
Love, Kathy
to see Dr Crist...asap...but in the mean time...
call this store and get some Samento mailed to you.
319-235-0246
They are the cheapest in the business when it comes to this herb that naturally has helped MANY LYmies/MS/Lou Gerhig's Patients.
It may cause you to have a "herxheimer' type of die-off reaction if it starts to kill "pathogens" in your body.
I believe it is a good start to anyone that suspects Lyme..until they get on antibiotics.
God Bless,
Trout 
(Northern Iowa)
quote:
Originally posted by kitsicox:
You've renewed my hope. Now I just need to get up the nerve to risk seeing Dr C.
The only RISK, and that would be a great RISK at that, would be to NOT see Dr. C
quote:
Originally posted by kitsicox:
I looked at mapquest--it would be about a 10 hour drive from St Paul to Springfield, MO. Am considering all transportation options. Driving seems most ideal-nice to have your own car in another city.
Yes, people come from all over to see Dr. C...my trip is anywhere from 6.5 to 8 hours, depending on how many time we have to stop or not. I, too, always stay in Branson for you can get such great deals on motels there, cause they have soooo many of them. I use www.roomsaver.com and use their coupons for even greater discounts.
Anyway, just wanted to send one more thumbs up for you calling Dr. C and getting into see him...he is the best.
Rosemary