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Avatar universal

unit of blood...worried!

I am having an upcoming surgery tkr, so I had a unit of blood drawn and put aside for me, just in case I needed it......got a phone call from the doctor's office saying the blood bank tested it and it came back both positive and negative for CHAGAS disease........I am a 67 year old female .....never had a transfusion......have not been to south America.....and live on long island NY......I did some research and am very worried.......they cancelled my surgery, and now I have to go to an infectious disease doctor........I never even heard of this disease........do you think the lab made a mistake or cross contaminated my blood?
Thank You............
20 Responses
Avatar universal
Has nothing to do with HIV.
Avatar universal
Hello. I don't know if you are still reading this thread, but was wondering what the outcome was? This was awhile ago.

I was reading about Chagas myself and considering that the CDC does not even have anywhere in NY reported, I'm wondering if they have an updated map. Most of the Chagas in the USA is considered brought in by immigrants who already had it, but if that's the case, I'm surprised their map has NY State without any reports. We get more immigrants from everywhere, because of NYC, than most states.

I have also heard the tests can be conflicting and you need more than one to confirm.

I Hope you are okay.
1415174 tn?1453246703
COMMUNITY LEADER

Yes there have been cases of Chagas disease in:

Texas, California, Florida, Virginia, New York and Massachusetts and even San Diego.

It is because the Reduviid bug that carries the parasite is brought in. You could have been bitten by one because you don't know it when they bite you. But, it is unusual. I think I agree I  would get retested. But it is possible not not probable.

http://medicalxpress.com/news/2014-11-undiagnosed-undertreated-chagas-disease-emerging.html

The other way of course is transfusions, which you didn't have.

So get retested. If you are positive you need to get treatment. I think it sounds like you can have the disease and not know it to start with for a while.

http://www.cdc.gov/parasites/chagas/gen_info/vectors/

Since the CDC map doesn't show NY as a place where the bug is. It doesn't rule it out 100% but the bug likes warmer temperatures. So it is hard to say. But, have you traveled to any of these places in the U.S.? Then that makes it more possible. There are a lot of immigrants in NY and perhaps you got bit by a bug. But it could be a false positive test. I doubt it though because they look for it visually not on a commercial test kit. So, was there a mix up? I never say never.

Retest and decide what to do. But make sure the doctor and the laboratory are warned to look for this disease because since it is unusual they may miss it since it isn't usually found here very frequently.

Regards,
mkh9

1 Comments
What about the specificity to Triatomine bugs? All Triatomine are Reduviidae but not all Reduviidae are Triatomines/
1415174 tn?1453246703
COMMUNITY LEADER
Please do let me know what happens.
mkh9
Avatar universal
When you say they look for it visually and not on a commercial test kit, what do you mean?

There are two kinds of tests that I know of. Looking for the actual Trypanosomes, or, in chronic illness, looking for antibodies via ELISA, Immunoflorescent Assay or other tests. That's because the levels of parasites are too low during chronic phase infection to be detected.
1 Comments
P.S. I'm not the person who originally started this thread.  I only started asking questions today.  The person who started this up top, had this problem a year ago??
Avatar universal
Where did you find the stats regarding New York?
1 Comments
Never mind. I read the link you posted. This is really disturbing. I emailed the CDC and asked about the lack of NY recognition. THey said "These are the best stats we have."
1415174 tn?1453246703
COMMUNITY LEADER
Hi: The members of Triatominae /traɪ.əˈtɒmɨniː/, a subfamily of Reduviidae
Here is a link from wikipedia to explain them.

https://en.wikipedia.org/wiki/Triatominae

mkh9
1415174 tn?1453246703
COMMUNITY LEADER
Yes I just got this question today. The moderators put it on my site. I answer them as I get them.
mkh9
1415174 tn?1453246703
COMMUNITY LEADER
Usually, they look for it in a blood smear. We look for the Trapanosomes in the blood smear (thick and thin smears).  Genereally immunoassays are used to distinguish between strains. But, they do have PCR now which would be better anyway. The problem in African or South America, is that in some places the cost of PCR may be too high. So we are all trained to know what these look like. PCR is not always available. But in the U.S. it is.
mkh9
Avatar universal
I understand the Wiki stuff about the bugs themselves. But that doesn't really answer my question regarding specificity of T. cruzi to Triatomines.
1 Comments
So, what matter here is the unit of blood tested positive for Chagas disease. I don't know how they test the units of blood for the specific test but usually in the clinical lab we look for the parasite not the reduvid but under the microscope in a blood sample.  So, if they found that it doesn't matter because T. cruzi is the parasite that causes Chagas disease.
mkh9
Avatar universal
WHat is your background on this subject? What is your experience?
Avatar universal
By specificity, I mean, are the Triatominae truly the only Reduviids that carry T. cruzi?

Everything I read says that PCR is there because the actual Trypanosomes will be at levels too low to detect in blood after several days, weeks or months.  And also that any cases in NY known, are in people who already immigrated in.

1 Comments
Regarding people in NY I agree it is unlikely the person got it from there. As I said to the poster I asked if she travelled outside of NY. That is the key thing here.
mkh9
1415174 tn?1453246703
COMMUNITY LEADER
Yes Triatomids, to my knowledge are the only ones that carry Chagas disease or  T. cruzi. I am a licensed clinical microbiologist. Have you been exposed yourself or are you just curious since the person that wrote the article is someone other than yourself?
3 Comments
Well for starters, let me say that I have hypochondriac tendencies. However, I came home from Kansas City on or around October 24th, and noticed a bug bite on my neck with a 3cm diameter circular rash around it; not a bullseye pattern ( no white in the center).      About a week or so later, I felt a little lousy during a meeting when I had to travel yet again, to Miami. I was having very bad post nasal drip and just overall crappy allergies, at the time. I felt a spasm mid gut and had the runs. I have had the runs or formed-yet soft stool on and off since. Gradually getting better.

I showed the bug bite and rash to a dermatologist in between the Kansas City trip and Miami. At that time, I was thinking about ticks, not Chagas. I recently was tested for lyme at the 30 day mark (ELISA) and it came out negative. I had doubts about it being lyme anyway.

I read about Chagas and now of course, I cannot help wondering. But in Kansas City MO, I was staying in a clean, decent hotel and went from there, to car, to an office building.

It was warm in KC at the time. It's just that I don't know what bit me and the red 3cm rash around it lasted three weeks or so.

Just reading about something doesn't mean it happened.

To read that a woman on Long Island who never visited South America, had even one positive test for Chagas though, is disturbing. Everything we read says that only a handful of cases seem to have been confirmed as being acquired in the USA.

Does every Triatomine bug have a certain percentage of T. cruzi carriers anyway? Does the number of carriers go down as you go further north in the states?
I don't mean to piggy back on this person, but the original questioner is not here it seems, and since you asked....
It doesn't sound like you have Chagas disease. They actually bite you in the eye at night when you are sleeping and you don't feel it. I can try to see if there is anything I can think of. I will write you when I get back. What symptoms do you have right now?
mkh9
Avatar universal
Other than I'm not entirely sure my, uh, "output" ( stool) is really reliably firm right now, nothing. Not a thing.

The bite didn't hurt a bit, and the center where the direct bite area was wasn't itchy when I woke up. About two weeks later it felt BARELY itchy at all. I read these particular triatomines - blood suckers - do not have the painful bite of many assassin bugs. Makes sense. They could not do well as nighttime sneaky blood feeders otherwise.  But I also had no propensity to scratch the area either. I only noticed when I looked in the mirror.

I read they bite the face but the neck is on the way to the face. I would bet not every one of them actually gets the face, but I also realize that just reading about something doesn't mean you have it, and where I was staying makes a Triatomine bug bite unlikely.

People get bitten all the time and nothing happens.
Avatar universal
By "reliably firm", I don't really have the runs right now. Things are probably 80-90% normal.    It may be something that happened while I was dealing with allergies? Maybe even IBS ( I've been known to get it, but it usually doesn't have results like this).

I don't want to miss something, nor do I want to waste time unnecessarily at an Infectious Disease doctor's office out of some needless worry.

My background is biology, but not micro. Ecology, evolution and behavior. I enjoyed parasitology in college though.
3 Comments
It sounds like you have an interesting back ground. What kind of work do you do?
I work on the Asian Longhorned Beetle program. It's a fight against an invasive agricultural pest.  What about you?
I am a microbiologist. I have done clinical and research (biotech) and clinical research. So I think we are looking at different sides of the same thing. But in this case I think the clinical side is more relevant except for the epidemiology.
mkh9
1415174 tn?1453246703
COMMUNITY LEADER
The Triatomid bug bites you and even though it is painless at the time of the bite. In some cases severe itching and other skin problems occur afterwards.
Large populations of triatomid bugs can cause chronic anemia through loss of
blood. You also get a fever and swollen lymph nodes after. You would have symptoms if you had it. They can see it on a  blood smear for blood parasites if you wanted to get it checked but I'm sure you don't have it.
mkh9
5 Comments
Here is a link you may like.

http://www.who.int/water_sanitation_health/resources/vector210to222.pdf
Thanks. I was kind of doubtful too. Most of what is out there including CDC info, says that you may not even have ANY symptoms, or they may be extremely mild, so I figure, the human body being what it is ( never textbook reliable), I thought it was possible to just have this one thing, or that maybe the odd feeling I had, which really at the time only seemed to be in bad A/C, was actually being ill.

The bug bite I had was weird with that long rash, but I also had the feeling a Triatomine would leave a bigger welt.   That's the one missing thing. It's very hard to find images of triatomid bug bites.  When you do a Google search you pretty much get either pics of Romanas signs - which not everyone gets -, or you see bedbug bite pics.
WHat about the PCR tests and IFAs?
That link is great. Thanks!
I just saw that you are using the words of the document you sent me.  I really appreciate your help but it seems like everything you have said has been word-for-word out of documents.  I know you do laboratory testing but do you have any real life, practical, clinical experience with Chagas and Chagas patients?
1415174 tn?1453246703
COMMUNITY LEADER
I usually summarize for you what I send in a link. Yes I have had "real" life experience in the lab with stool samples (for parasitology mostly. We also worked with pinworm paddles, and received whole worms and various things even spiders and other insects which we can try to identify or send to an entomologist. But in the U.S. you don' t really see much Chagas disease. But because I worked at a county hospital we got patients that came over the boarder from Mexico, Central and South America and we took care of those patients. So I saw a couple of cases of Chagas disease over the years. But not loads of them. I worked in the laboratory non on patients directly. So we don't normally see the patient when they come in. We communicate with the doctors and they tell us their symptoms, especially when there is some odd going on in a sample. But I am also trained because of my license to know the clinical side of things regarding patient symptoms etc. Yes I do have to continually read to keep up to date as well and do continuing education. Science , as you know, is constantly changing. FYI before I got my degree/licenses I worked as a phlebotomist and worked on the trauma team and at the bedside. So, that gave me patient contact as well. Had nothing to do with this but it gave me a different view point  on the other side of things. It was interesting what you see.
regards,
mkh9
3 Comments
You asked about PCR and serology. These can be used. What they do is that usually in the hospital setting it is an acute infection so they check the blood sample for the Trypanosome parasite as well as for malaria if it is suspected. If it is a chronic infection right now they are only doing PCR and serology on  blood bank samples as far as I can see. This is probably because it is rare here in the U.S. So when I worked on these these tests were  not done because we didn't have this problem then. The people that came in were acutely ill. So you would look at thick and thin smears of their blood for the parasite. Do you see what I am saying? But for all other parasites generally we did a variety of things mostly looking at the stool samples for eggs  or amoeba of other parasites not Trypanosomes.
mkh9
Okay thanks. Don't get me wrong, I had to ask.  Some of your summaries were actually word-for-word quotes from the sites.  

I always ask anyone these sorts of questions before I take their word. Especially online  It's just the right thing to do.

Science changes, and science questions. But you sound like you have had quite a number of experiences.

My only real life experiences with pinworms have been puppies and reptiles; the latter being imports to the Bronx Zoo during my volunteer days there.  

The last details you gave me are what I was looking for!!!   I thank you!  :)
I am glad to clear things up for you. No problem. I have seen a lot of pinworms. They were pretty common at the county hospital as we got specimens from a lot of sources. It sounds like you are a biologist. It is typical for people in science to ask a lot of questions.
take care.
Avatar universal
Sort of. I don't have a PhD and do not do my own experimentation, so I don't officially count myself as one. But my line of work and education give me access to certain kinds of info.

Now if anything I've been "backed up". Will likely just go see gastroenterologist soon if this doesn't resolve. I can't think of any insect that causes that as a primary clinical sign or symptom offhand.

The original poster hasn't checked the thread in awhile. Odds are she is okay. Usually people who have reason to be scared are the ones that keep coming back and asking questions.

Thanks for everything!
2 Comments
Okay, well take care. Glad to help.
Hi. I was revisiting this topic and re-read the documents you posted, and did more looking online. I am still puzzled by a couple of things.

First, I cannot find anything that says Triatomine bugs have been found in New York. Everything suggests that cases of Chagas in New York are in folks who already had it when they arrived there, from South or Central America.  Which URL or document states that the bugs have been seen in NY? The one you originally used to back that up, never really said anything about the actual bugs being in New York. It just said Chagas cases are there.

Second, you said I would have had symptoms. But one question I never felt was answered was, why then, does every source say that people can be asymptomatic or have mild symptoms?

I hope you are doing well and I appreciate your input as always. :)
1415174 tn?1453246703
COMMUNITY LEADER
Hi, well most of the U.S. has Triatomid bugs that can bite you and transmit the parasite that causes Chagas disease. So if you traveled to other states in the U.S., especially the southern half, it is possible to get it. I would certainly get retested to rule out a lab error. If positive see an infectious disease doctor that can recommend treatment for this.
Regards,
mkh9
3 Comments
Hi. Thanks. I'm not the one in this thread that was tested to begin with. I was that other person. :)
I know. I just saw some unanswered questions. thanks,
mkh9
Also, your name flagged when I looked at my watch list too. Sorry I thought you were asking more questions. I see this was an old post.
regards,
mkh9
Avatar universal
Okay thanks.
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