LymeNet Flash: Hold the Mayo

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Hold the Mayo

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Author

Topic: Hold the Mayo

jsnyde2
LymeNet Contributor
Member # 7888

posted

Wow Mayo just goes by labs, period. I don't know why I am so disappointed. I guess I thought I might have a classic lab-covering case. I had the damn aretha migrans, for heavens sake!! Negative on every tick born illness they tested for. Does anyone every test positive for TBD at Mayo??

And they tested for a lot of strains because they really did suspect a TBD from my symptoms. I have an abnormal (high) Procalcitonin result - which means there is bacteria in my system.

Liver enzyme tests super high.

Swollen foot, ankle, knee and right knuckles. Foot so sore I can't walk.

What is it??

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

jsnyde2
LymeNet Contributor
Member # 7888

posted

BTW waiting for appt with LLMD November 1

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

Tincup
Honored Contributor (10K+ posts)
Member # 5829

posted

So sorry you are another Hold the Mayo victim. That sucks, so do they.

In all my years I've only ever heard of ONE person who tested positive for Lyme at the Hold the Mayo clinic that had Lyme.

One. And we've seen so much of the damage they do to people here. It is shameful. It should be illegal.

Did they test for Bartonella? Sore foot can be Bartonella related.

Good to hear you have an appointment with a REAL doctor coming up. Best of luck to you in that regard.

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004 | IP: Logged |

randibear
Honored Contributor (10K+ posts)
Member # 11290

posted

mayo and cleveland clinic. two places I would never go.

my husbands nephew's wife went to both. they missed her stage four cancer. it had metastasized to lymph system.

how in the sam hill do you miss cancer????

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do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007 | IP: Logged |

jsnyde2
LymeNet Contributor
Member # 7888

posted

Tincup: LOL!! I didn't know that term was so widespread here. I feel better. I was feeling pretty beat up because Mayo makes you feel like you are crazy with your unexplainable (by labs) symptoms.

I do suspect Bart but also my foot is an old injury spot so that could explain it too. I actually think Babesia fits my additional symptoms of nightsweats, anemia, fevers, hot and cold, and hip pain.

It will be interesting to see what comes up when I get in with LLMD.

Randibear: that is scary! I'm not impressed.

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

me
Frequent Contributor (1K+ posts)
Member # 45475

posted

Jsnyde2- you are not alone on the hold the mayo. Many have been misled by them. I agree with tincup about being checked for bartonella, along with all possible coinfections.

You aren't crazy. You're in a crazy situation with warring ideologies. Keep us posted on the LLMD appointment.

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Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

Posts: 1431 | From USA | Registered: Mar 2015 | IP: Logged |

jsnyde2
LymeNet Contributor
Member # 7888

posted

me: thanks for the encouragement. You are right, there is a crazy in there somewhere, and I don't think it's me!

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

jsnyde2
LymeNet Contributor
Member # 7888

posted

Yes they tested for Bart and negative there too. The only things I am getting a positive on are scary things like liver enzymes, anemia, and septis

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

quote:
Originally posted by jsnyde2:

Tincup: LOL!! I didn't know that term was so widespread here.

-
I thought it was VERY well-known here. Glad you have an LLMD lined up!

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--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001 | IP: Logged |

bluelyme
Frequent Contributor (1K+ posts)
Member # 47170

posted

Consider dna connexions if you need a positive test to treat ....microscopy works too..

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Blue

Posts: 1539 | From southwest | Registered: Dec 2015 | IP: Logged |

jsnyde2
LymeNet Contributor
Member # 7888

posted

Blue: What is microscopy? Like a blood smear?

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

jsnyde2
LymeNet Contributor
Member # 7888

posted

From Infectious Disease Doc's Nurse:
"There is no evidence of tickborne illness, and he is referring you to a rheumatologist.” I declined, and I am also canceling my knee aspiration on Thursday.

No evidence: Classic Erythema Migrans rash, swollen knee, swollen ankle and intensive foot pain, malaise, night sweats and on and off high temps.

Onto LLMD November 1. Goodbye Mayo, and good riddance!

Posts: 351 | From La Crosse, WI | Registered: Sep 2005 | IP: Logged |

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