LymeNet Flash: Misdiagnosed

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Misdiagnosed

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Author

Topic: Misdiagnosed

KENNEDY
LymeNet Contributor
Member # 9628

posted

Have any of the lymenet members been diagnosed

with a blood disorder like Immune Thrombocytopenic

purpura, (ITP)? I know that there have been

many

many people whom have been misdiagnosed, some

were

told they had M.S. and some were told they were

crazy, when in fact it was lyme, coinfection or

both.

I'm trying to find help for a friend that is now

going in for a third blood transfusion within the

last 10 days. She is high risk for tick bites.

I don't know where I'd be today, if

not for the help of some of the lymenet members

back in 2006, thank you all for that and I hope I

can get your feedback for her. Thanks All

Posts: 158 | From PA. | Registered: Jul 2006 | IP: Logged |

KENNEDY
LymeNet Contributor
Member # 9628

posted

What are some of the illnesses you were told you

had and were treated for, when in fact you had lyme

and/or coinfection(s)?

Posts: 158 | From PA. | Registered: Jul 2006 | IP: Logged |

TF
Frequent Contributor (5K+ posts)
Member # 14183

posted

Menopause. (It turned out it was a false menopause induced by lyme disease.) Once I was given good treatment for lyme, I was again pre-menopausal.

Also dry eye, dry mouth (had to doctor for both).

Posts: 9931 | From Maryland | Registered: Dec 2007 | IP: Logged |

Robin123
Moderator
Member # 9197

posted

I went to RSI groups for years - repetitive strain injury - made as much sense as anything...also TOS - thoracic outlet syndrome.

Basically, wherever your symptoms show up, they'll give you a label for it.

Posts: 13171 | From San Francisco | Registered: May 2006 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-
assuming you are referring to your friend when you ask about " Immune Thrombocytopenic purpura"

& you say you are "trying to find help for a friend that is now going in for a third blood transfusion within the last 10 days. She is high risk for tick bites." (end quote)

BABESIA should be considered. Yes, lyme and other tick borne disease, too but Babesia really jumps to mind here.

And, if she has no spleen, speed is of utmost importance. Still, the spleen can be very much damaged by babesia.

Cross search at Google (then also put in all the other tick borne infections one by one. Use borrelia & lyme, separately as you might get different results with each):

"Immune Thrombocytopenic purpura" Babesia

One very important article pops up. It's not accessible to the public but you can get a hospital patient support / library to print it for you most likely.
-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

KENNEDY
LymeNet Contributor
Member # 9628

posted

Thanks Keebler, She has her spleen. I was checking

out Anaplasmosis and I stopped dead in my tracks

thinking that was probable. So I'll look at

Babesia

next. I'll also try to find her a good LLMD. I'm

not too familiar with who's still practicing in

this area. I'm certain my Dr. won't take her on.

Thank you for your reply.

Posts: 158 | From PA. | Registered: Jul 2006 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

-
You might post in "seeking" for where she lives, if different than the state you list for yourself.

If you can work from the coinfections, you have a better chance of doctors listening to you and she might improve enough to then make it to a LLMD for a full assessment.

Good luck to you and your friend.
-

Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

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

posted

Hey there Kennedy!

Babesiosis and Theileria come to mind. Just started writing up a new page for Theileria tonight, not at all complete, sorry, but here is the link for it to get you started.

Theileria
https://sites.google.com/site/marylandlyme/tick-borne-diseases/theileria

Babesiosis- Symptoms, Diagnosis and Treatment
https://sites.google.com/site/marylandlyme/tick-borne-diseases/babesia

Tick Borne Diseases- Symptoms, Diagnosis and Treatment
https://sites.google.com/site/marylandlyme/tick-borne-diseases

Good luck!

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

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

KENNEDY
LymeNet Contributor
Member # 9628

posted

read:http://patient.info/health/immune-thrombocytopenia-leaflet.

Well, this is what they ( the drs,) are going with

right now. they ruled out enlarged spleen, cancer,

and other things. So they're treating her for

ITP.

She had gone into her Dr for a rash on her legs

and

brusing all over, and fatigue. They did blood work

and when it came back her platelet count was 7.

she was sent straight to the emergency room and

was given a blood transfusion which didn't raise

her platelet level and then received another

transfusion before she was finally sent home

few days later, but

it took the second transfusion to get her

platelet level to above 140. That was last

Saturday. Last evening she had to go have it done

again. Her platelet level was at 12. So That's

why I had asked if anyone with lyme/coinfections

ever had any of these symptoms. She has always

been an outdoors person, biking, hiking,

gardening, also a science teacher that takes her

outside doing research. So she's been right out

there in it just as a hunter is.

Posts: 158 | From PA. | Registered: Jul 2006 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

She could easily have both.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

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

posted

Hoping she is better and they get some answers soon.

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

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

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

posted

Did she take anything that would suppress the bone marrow?..i have thrombocytopenia but she is not making any platelets.!.

.if it is systemic infection causing it sounds like it is really deep rooted...unfortunately the blood transfusions make them more succeptable to other infections...

I will keep your friend in my thoughts and prayers

--------------------
Blue

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

KENNEDY
LymeNet Contributor
Member # 9628

posted

Thanks Blue,

So you're being treated for both Thrombocytopenia

and Lyme?

How I wonder do the Drs. determine that it's not

Lyme/coinfection(s) that's at the root of you

having Thromboctopenia, since the cause is

unknown? Also Do you go to a LLMD for the lyme

and another specialist for Thrombocytopenia. May

I ask, what symptoms did you have when they

diagnosed you with Thrombocytopenia? I want her

to go to an LLMD to test for Lyme/coinfection(s)

but it's hard enough to get a positive reading

from your blood when they aren't messing with

the blood, as they are in her case. I believed

for years her and her daughter should be tested

for lyme, just because of their lifestyle.

thank you for your reply.

Posts: 158 | From PA. | Registered: Jul 2006 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Just living in PA is risk enough.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

KENNEDY
LymeNet Contributor
Member # 9628

posted

I know, it is really bad.

I was just looking at a graph on the cdc website

on the progression of cases of lyme reported

from 2001 to 2014. You almost can't see PA.

and Maryland you can't see at all.

http://www.cdc.gov/lyme/stats/index.html

Posts: 158 | From PA. | Registered: Jul 2006 | IP: Logged |

Notti
LymeNet Contributor
Member # 43843

posted

Borrelia and many co-infections (Ehrlichia, Anaplasma, Brucella, Babesia, RMSF, etc) can indeed cause thrombocytopenia. Some Lyme patients experience these problems. Treatment is difficult and mostly consists of trying to eradicate the infection with antibiotics and that may take a long time.

It is important that other causes like cancer are ruled out. Here are listed some other factors to consider: https://www.pdsa.org/about-itp/diagnosis-questions.html
https://www.pdsa.org/about-itp/causes.html

The doctors may perform a bone marrow biopsy. Either she isn't making enough platelets in the first place, or the bone marrow is producing enough platelets but they are being destroyed later on.

Sometimes they propose to remove the spleen, or use steroids or other immunosuppressants, both are not a good idea if the patient has an unknown infection. So be careful with that.

I remember that Bea Seibert had some experience with thrombocytopenia and she knew an LLMD who treated blood disorders caused by tick borne infections. She hasn't been here for a while I believe, but you could try to contact her at her email address:
seibertbb (at) yahoo (dot) com
Perhaps she can help to find a good doctor for your friend.

Best of luck.

Posts: 109 | From The Netherlands | Registered: May 2014 | IP: Logged |

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