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» LymeNet Flash » Questions and Discussion » General Support » What do I do next

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Author Topic: What do I do next
Junior Member
Member # 7613

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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 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.

Posts: 7 | From MN | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338

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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.

Posts: 6945 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 6005

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Hey Joe,
Sorry you are having symptoms that led you here, but glad you are here!

Click on the link below for Tincup's links for Newbies. It contains a wealth of info.

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!

[This message has been edited by pippy (edited 14 July 2005).]

Posts: 446 | From California | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Member # 743

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Mayo has told people "We don't do Lyme" forget that! Get tested by a lab that specializes in Lyme Igenex.

here are some links for you

Treepatrol's links

Tincup's Links for new members

Dr. Joseph J. Burrascano's Guidelines

Western Blot explanation:

The cause and spread of Lyme

More info:

Lyme Wars

Lyme Disease State Info

Rose's 15 Facts for Newcomers

Abbreviations for Lyme-speak

Making the most of your LLMD visit

Success Stories

Glad you found us!

Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!

Posts: 95647 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200

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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  |  IP: Logged | Report this post to a Moderator
Honored Contributor (10K+ posts)
Member # 4117

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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.

Heres some reading for you.

Newbies List 07/12/05


How to Post what where explanations
Remember This
Rules LymeNet.Org Webmaster
Here's more goodys! A typical response to newcomers.

Page 1.

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

Lyme State Info Cheryl's
Why we Don't Use Dr's Names Here

Cheryl's LDT&D
Lyme Disease Misdiagnosed As ...
Art Doherty Misdiagnosed
Art Doherty Lots a Links

Conflicts in Lyme

How to Search Courtesy of Danq
TC LymeNet Links for New Members
TC 50 Questions

TC Warning To Posters

Lida Mattman


Page 2.

Newbie's Lingo

Links for family members

Lyme Disease Audio Network
Dr B's Treatment Guidelines

Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Symptoms
Lyme Disease Symptoms PDF

Lyme Disease Symptoms
Tick Pictures Graphic
Tick Pictures

Co-IinfectionsThanx M
Symptoms & Associated Conditions

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
Citations for Underreporting CDC

MP Controversy
MP 2
MP 3
MP 4

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Igenex Labs
Bowen Lab
Bowen Lab Forms Protocol

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
( 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.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Western Blot
Blood Brain Barrier

ABX `s Cross Blood Brain Barrier
Blood Tests Meanings

Blood Tests Meanings

Page 3.

Flagyl,= List of ****dazole's that I have found
Cyst's Treatment
ABX= Antibiotics
Antibiotics Poll
Abx's Poll
Flagyl" by Martin Atkinson Barr

Drug Interactions and Other Drug Info
Drug Digest & Interactions
Drug Interactions
American Medical Women's Association
Tiscali Reference Encyclopedia

What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Herxheimer Reaction Explained


Quote Lida


Yeast Problem Diet too
Oral Yeast
Oral Yeast


Put word Diarrhea in Search

More Tick Disease
Infections by Bugs Ticks Mosquitos Lice Etc
Infectious Disease List

Coinfections 1

Coinfections 2

Bartonella Rash's



RMSF Spotless=HME


Tularemia Rabbit Fever

Mycoplasmal Infections
Mycoplasmal CDC


Autoimmune Debate

Mycoplasma Treatments


Elderly Alzheimer's


Another Story

Lou Gerhrig's ALS

Lida M
Good Article ALS MS And More Etc
Good Article ALS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier

Lupus Lyme
Lupus Lyme Misdiagnosed
Lyme Disease Misdiagnosed as Fibromyalgia
Fibro Lyme

Lyme Misdiagnosed as other disease's
Lyme Disease Misdiagnosed As ...

Page 4.

Garlic Proper way to eat it

Check Diet Link Atkins Diet

PORT-A-CATH (catherter)
Abx's Port


Transmission Lyme
Transmission Fleas Mosquito's Food Etc
Transmission Etc

Transmission Art Doherty

Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content

Looks like like they killed this one hmm Blood Supply, Its back!

Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections

Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

Legal Help
Lyme Literate Attorney's PA

Medical Records Privacy
Search Drs Background

Search Dr's Backgrounds link

Legal Help
Legal Help
Legal Help
Legal Help
Legal Help

MatthewGoss Site

Cheryl's Site


Tonsils crimson crescents

Killing Lymphocytes By Spirochetes

Wealth of Info

USA Support

SupportGroups Canada
Canada SupportGroups
Associations, Foundations, and Support by Country

Marnies...... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Part1 Long over Due

Updated in a Nutshell
For My Friends

Canlyme MAG
Silver Discussions
Silver Treatments
Tom Grier on Silver

Articles By Tom Grier
NMDA Receptor Lyme Brain

Help Free
Help with Meds
Help! Free Meds
Vitamins you should Know
Tests Synonyms Guide
Lab Tests Looky
You can get your medical record for free once a year from the Medical information Bureau(MIB) if company participates

Melanie Reber

Coping with Financial Burdens

Blood Donor Info
Pain Info
Pain Info

Female Related Problems

Tin Cups Pregnancy & Lyme Update 5/24/05
Female Issues
Unplanned Pregnancy
TC Link Pregnancy
Insurance SS
Disability Help Minoucat Bunches of Goody's

How to apply Permethrin
How to apply Permethrin Pic
Permethrin Site
Discussion on Repellants
ALDF Four Poster Coup
Tick Testing
Tick Testing
Herbs Be Careful
HerbsCancer Center

Psychiatric Lyme
Fallon & Tager Report
Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme

Dirty Truth
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme
Schizophrenia & Lyme Disease
Sunra links

Page 5.

Scans & How they Work

How Cat Scan Works

How PET Scan Works

How MRI Works

How XRAY Works

How UltraSound Works
Explains LD50 Chemicals Toxicities

Interested in what Trolls are?


Success Stories
Success Stories
LD Chat Room Links
Spirochetes Pics Link
Conspiracy Theories
US Patent Pathogenic mycoplasma

A copy of this is stored in computer Help section.

Newbie Links

Tree's Flash

Updated 07/12/05

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 7076

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Good advice from above Joe.

I know we went to Hopkins in MD and they never mentioned lyme. We went to many specialists for three years.........

not until a pain specialist sent us to someone who happened to use Igenex labs for lyme testing did we begin our journey with lyme doctors/meds.

Posts: 1240 | From Centreville,VA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Junior Member
Member # 7613

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Thankyou for the advice everyone.

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.

I found out they used quest for lyme tests.

Thankyou everyone for your time!

Posts: 7 | From MN | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 6631

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Hi Joe,

you were givin alot of good advise here.

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,

Posts: 986 | From Michigan | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator

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