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
Posted by KENNEDY (Member # 9628) on :
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)?
Posted by TF (Member # 14183) on :
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).
Posted by Robin123 (Member # 9197) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by KENNEDY (Member # 9628) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Tincup (Member # 5829) on :
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.
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.
Posted by Lymetoo (Member # 743) on :
She could easily have both.
Posted by Tincup (Member # 5829) on :
Hoping she is better and they get some answers soon.
Posted by bluelyme (Member # 47170) on :
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
Posted by KENNEDY (Member # 9628) on :
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.
Posted by Lymetoo (Member # 743) on :
Just living in PA is risk enough.
Posted by KENNEDY (Member # 9628) on :
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.
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.