In the summer, my 14 year old son, husband & I live in a family house on Block Island. We are there most of the summer with: husband's younger brother, wife, girls aged 3 & 8; and other brother, wife, boys aged 15 & 17. Yes, all at once for most of the summer!
Block Island is part of UCONN's ongoing Lyme study. This past fall, My son & I, and the inlaws with the girls were on the island when they were doing the testing, so we all had it done.
We heard nothing until yesterday, when letters arrived. Both my son & I receive the following: "For Lyme Disease, your Lyme ELISA reading is positive. We consider this result to indicate possible infection."
My jaw dropped so hard that it hit the floor. Both my son & I are highly allergic to mosquito bites, so I've always hoped that a tick bite would include a rash that would be noticable. But we usually have insect repellent on....and have always been diligent in avoiding high tick potential places, and always do thorough tick checks.
Okay, so it got by me, right? Twice?!? Then my brother-in-law calls - and all four of them have the same results! (And it turns out that my sister-in-law's friend & daughter get the same letter.)
Now I know from my time here a couple years ago seeking info about a friend's daughter with ehrlichiosis, that a positive ELISA is actually impressive as so many folks who do have Lyme test negative on that test. After checking the web, I can't see too many conditions that give a false positive.
So my question is this....there are few explanations for 6 people in one house to test positive with no known bites, rashes or major symptoms. The only things from the Study end would be clerical error (!). But the only logical explanation if there is no clerical error is that we "caught" it from a common source, and I don't mean that we were sharing ticks
Is there any documentation for this possibility?
Read this article. It'll probably scare the daylights out of you, but you need to know...and so do alot of other people!
I always wonder if people like your family perhaps already had Lyme from birth and the testing just now showed up. I had mostly dormant Lyme for about 30 yrs. Wasn't dxd until I'd had it for at least 43 yrs. But I wonder even now if maybe I've had it since birth.
Breakthroughs in Lyme Disease http://flash.lymenet.org/ubb/Forum1/HTML/024093.html
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Lymetutu
Although the kids may have been born with it (which might explain some of my son's cronic problems in some areas), my sister-in-law & myself probably weren't because of where we were born & how old we are.
Is there any info on transmittal by mosquitoes? That is the only other explanation that I've been able to come up with.....
I think it's equally possible that you had unnoticed nymph bites. Many folks don't remember the bite or have the rash. And there is some suspicion about transmission via mosquitos, fleas, bedbugs, and other bugs.
How are you feeling? Are you symptomatic? Did you grow up in this area?
There have been studies showing asymptomatic horses that test positive for LD. So I agree with Lymetoo, you may have had this for a long time.
My LLMD is fascinated by the phenomenon of how differently we all respond to LD. Some people just brush it off, and some get deadly ill. Hope you're among the lucky ones.
It is mentioned in this CBS article
A New Age For Deadly Germs
NEW YORK, Aug. 20, 2000
http://www.cbsnews.com/stories/2000/08/18/sunday/main226092.shtml?CMP=ILC-SearchStories
If the link breaks use this: http://tinyurl.com/5srzn
I suggest you find an LLMD to be properly evaluated.
I see you are in CT. I would be happy to point you in the right direction.
Paula
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Lymetutu
One of the questions that was asked (and there weren't many) before they drew blood for the study was whether you had allergic reactions to mosquito bites. I had never been asked that question before in any context, so I assumed that they were pursuing/documenting a link between allergic reactions to mosquito bites and tendency to have a Lyme rash.
Block Island was one of the earliest centers of infection and awareness of Lyme, and many folks who live/have homes there have had it - from all the people that I know, I would have to guess over 50%.
But that makes us all hyper vigilant, and I have always been. My rule of thumb for my son & myself is to keep a distance of 2-3 feet from tall grass, brush, and stone walls. And do a thorough tick check every day when on the island, or when outside in the yard at home in CT (Waterbury area). There are no pets either on the island or at home.
Symptoms? Hard to tell. My son is 14, had ``respiratory distress syndrome'' from age 2 until 12 - under control with Singulair. Had a rare form of ambylopia, genetic, that we discovered at the age of 4. He had an 80% loss of vision in one eye, which we've been able to correct to 20/30, after years of patching and work with it. Slow metabolism, but starting to be better as he's entering puberty. Average kid? Who knows? Physically active, black belt in karate, gifted kid who did Stanford University's long distance learning program in math from 4th grade to this year, now at a very rigorous high school, earning high honors.
I'm a harder case to figure out. I'm 54 (had my kid at the age of 40) so it would be hard to distinguish between normal aging related issues and possible Lyme symptoms. I have osteo arthritis in my left thumb joint, and it's starting in my right. I definitely have Seasonal Depressive stuff, have had that for years, but it's getting much worse each winter. Just had a raised bump cut from my left eyelid, and it seems to have accentuated the difference between my left eye and my right - my best friend said that it looked a little droopy last week (possible mild Bell's Palsy?).
Etc. etc.......but on the other hand, I started doing karate at age 46. Because of the osteo in thumb, haven't done much for the past two years, but just found a studio that does not emphasize sparring, but lots of forms - I can do that! Yesterday I worked out for an hour and a half lesson.
Ouch, it's taken me most of the day to write this on & off, really busy day (and giving MUCH thought to the symptoms question)......I'm going to post this, then answer the other questions.....
And thank you all for responding!!!
Minoucat, I understand what you're saying about nymph bites, but with the hyper vigilance that we've lived with all these years, the only thing that makes sense to me is mosquito bites, which get us now & then no matter how much repellent we live with. I hope that I've answered your other questions about symptoms in the previous post. When I have time, I'll let you know about my nieces and brother & sister-in-law....
Pacbird, thank you so much for offering to point me in the right direction for a good LLMD, please email me at my screen name here at your domain. I'm in the Waterbury area.
Fortunately, I have a great doctor (who is very aware of long term Lyme) who is also a personal friend, and I have no doubt that she will support me for testing & treatment. Our letters said negative for babesiosis, but they did not test for ehrlichiosis or bartonella, and I will want to be sure that Lyme is ``all'' we have (OMG!!!!!! I can't believe this!!!!!!!!!)
Whew, deep breath. Okay.
Also fortunately, my son's pediatrician is literally one of the best in the state, and is also my nieces' pediatrician - so my sister-in-law and I can co-ordinate the kids' treatment and work together with our pediatrician. I know that Dr F is going to be very concerned about this, and I think that she will go many extra miles for testing & treatment.
Thank you all again!
Postscript.....from my original post, my friend's daughter who had ehrlichiosis a couple years ago......her daughter has recently been having serious problems with light-headedness, dizziness and passing out or almost passing out (is a diver, and came very close to passing out in the water after a dive a few nights ago!). They visited us on the island for a few days this summer. Yes, my friend will have her Lyme tested this week.........
Hence if a person that has Lyme is bitten by a misquito then that mosquito bites some one else can Lyme infact be transfered. We do know that mosquitos can mechanically trasmit Lyme.
I would have to say yes this could happen, especially if the person with Lyme is not currently under treatment. This would be a major concern for me.
Good luck in your journey to wellness. This test MAY have been a real Godsend. Cause I remain--just don--
I showed one to a doc and he had to use a magnifying glass to verify what it was.
If you were in an infested area for long I'd believe the test. Charlie
quote:
Originally posted by hwlatin:
One concern I have is mosquitos. If a mosquito bites a person infected with something like Maleria and then bites another person, it can pass it to that person. There have been recent documented cases of this.Hence if a person that has Lyme is bitten by a misquito then that mosquito bites some one else can Lyme infact be transfered. We do know that mosquitos can mechanically trasmit Lyme.
I would have to say yes this could happen, especially if the person with Lyme is not currently under treatment. This would be a major concern for me.
I grew up in Houston, TX and we have plenty of mosquitoes down there, year round.
auntdeen....I'm 54 and believe I've had Lyme since I was around 8. Could have been born with it too. Very possible.
I've heard of others who said they thought their rash was poison ivy.
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Lymetutu
Also her book.
[This message has been edited by treepatrol (edited 03 February 2005).]