I don't know if I'm barking up the wrong tree, but I've been ill a little over a year now with apparently the stangest thing known to man. I've been to several doctors a few neurologists and they concluded I have a viral infection. My symptoms lessened over last winter but have since returned this June. Came across this site and I think I have lyme. I have had 40 of the 75 symptoms on the list from canlyme.com. I asked to be tested for lyme, eurchiliosis, babesiosis, and all came back neg. I took my symptom list to md and asked for antibiotic. They agreed to try it and put me on Doxycycline for 6 weeks at 100mg 2x a day. They weren't 100% convinced so they are making a referral to the Mayo Clinic. Is the Mayo lyme literate? Should I go to the doc in MO. people talk about? I live in MN. Any help would be appriciated! This all started May 2004 with a tingle in the back of my head, to not walking for a week, to hardly any symptoms at all. Now back to legs, knees, head, chest throatr, etc. Thank you for your time.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Well Joe, it's the middle of the night, and you're not getting many answers yet, and I have a minute.
You seem to know about Lyme and coinfections. May I ask, what pointed you in that direction? I'm impressed, most of us stumble around for years with all kinds of wastebasket diagnoses. Mine was fibromyalgia.
You are persuasive if you got your docs to give you six weeks of doxy, although Lyme literate docs usually prescribe 200 mg twice daily.
There are lots of Lymies in your neck of the woods. If you repost this in the "Medical Questions" forum with your state in the title, you might scare up a few of them.
Um...I don't think the Mayo is Lyme literate. There are people here who'll be able to tell you about that.
Most of the tests for Lyme are not reliable. Lyme is a clinical diagnosis, which means that the doctor diagnoses the patient based on his symptoms. Lab tests can be used to support the clinical diagnosis, but not to rule it out.
Read as many of the posts as you can from the Medical forum, you'll learn alot. (Hah, you'll also learn about some of the problems we've been having around here.)
You need to read the links for newbies. If you don't learn about Lyme, you won't be able to tell if you're getting good care from your docs.
Take care, and good luck. Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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good idea to start with reading about ILADS (International Lyme and Associated Diseases Society) guidelines to treating lyme disease. This is the "Bible" we tend to go by for diagnosis and treatment of lyme disease.
Go back to the flash discussion forum listing and click on "Finding a Doctor." Post where you live and someone will e-mail you a list of lyme Literate Medical Doctors (LLMD) in your general region.
Only an LLMD is qualified to diagnose and properly treat this complex disease. Mayo clinic does not follow ILADS guidelines. You may waste valuable time and energy going to a place that does not follow these guidelines!!
Good luck and best wishes on your journey toward health! -pippy
[This message has been edited by pippy (edited 14 July 2005).]
Posts: 446 | From California | Registered: Jul 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sorry to hear of your troubles, Joe.
Mayo Clinic is notoriously IL-literate about Lyme, sorry to say.
As far as testing goes, the tests you've had are probably meaningless if they didn't come from IGeneX or a similarly reputable lab specializing in tickborne diseases. Other labs just don't come close. Many of us here tested negative through local quack labs before using a REAL lab like IGeneX.
Mayo Clinic will use their OWN lab, not IGeneX.
You could get your doctor to write you a scrip, call IGeneX and get a test kit sent to you, have your lab draw blood, and get tested through IGeneX prior to even finding an LLMD.
However, the very best thing to do would be to find a decent LLMD in your area - doesn't have to be a famous one - and let him do all of this for you.
As others have mentioned, testing only is part of the picture - an LLMD will diagnose and treat you based on your clinical presentation.
If you're planning on the Mayo Clinic thing, why not instead spend your energy and money on a good LLMD?
It DOES sound like you've run the gamut of other docs (multiple neuro appts, etc) enough to satisfy yourself about ruling out other disease processes.
I'm curious why your docs say "viral infection." Did any of your tests so indicate? Do you have any abnormal test results? Did you have MRI done? Any other workups?
I am not a doctor! Just a Lymie! Welcome to the Board and good luck...
Michelle M
[This message has been edited by Michelle M (edited 14 July 2005).]
Posts: 3193 | From Northern California | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Is the Mayo lyme literate?
NO they are Not!
Doxy dose too low unless your a wee itty bitty feller needs to be around 750mg at dose of 250mg 3 times a day. Also youll need probiotics so you dont get yeast infection and keep your digestive tract funtioning well. Then add flagyl 3 times a day after you have been on doxy a month or so Iam not a Dr so you need to post for a LLMD in Dr section include your email addy. Good Luck.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
Michelle - doc's suspected viral infection because of a slightly high white blood cell count and the chronic sore throat along with the night sweats.
I have had 3 mri's, ct scan, Spinal tap which tested for ms, lyme, and other things. I've been tested for arthritis, lupus, diabetes, vit. b deficiency and countless othr things. All tests have been neg.
I was told I was very healthy and is was viral just give it time. I was also told I should take some kind of anxiety med. that would probably help.
With the night sweats, you probably have Babesia. Which they probably DID NOT test you for. It doesn't really matter if they test you or not for it. There are hundreds of strains and they can only test for TWO of the strains.
Do yourself a favor... Go to a LLMD (Lyme Literate Medical Doctor) as soon as possible. Most doctors even in the best hospitals don't know enough about LD.
My doctor told me it was highly unlikely that I had Lyme because "There is NO Lyme in Michigan" You will hear similar stories like this. Don't make yourself one of them.
Good Luck, Lisi
Posts: 986 | From Michigan | Registered: Dec 2004
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