posted
Just got a call from DD ped. He does not think she needs to be tested for Lyme and does not belive it can be transmitted thru utero or breastmilk.
She has had her share or illness and I mentioned a high fever over 105 and his comment was that is not a sign of Lyme.
He thinks I could be tested but no need in DD getting tested or to stop bf.
I mentioned that I did have the bulleye rash about the size of a quater. He replied that they have to be about the size of a baseball and continue to get bigger.
Okay is this what everyone is talking about about regular doctors having no clue. Should I pursue this furthur with a Lyme doctor or let it go?
Posts: 24 | From Leitchfield, Kentucky | Registered: Jun 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Yes, sorry to say, this is what we are talking about. "The size of a baseball?" Not always, not always clear in the center, and even non-existent about half of the time.
My son's rash (he was 5 at the time) was 2" in diameter on the back of his knee, a classic site for ticks to bite. I decided it probably wasn't Lyme, because we'd been told to look for an expanding rash with a clear center.
That was NINE years ago. You'd think that doctors would be better educated by now.
Maybe it was that rash, maybe it was no rash, but he tested CDC positive after having severe symptoms, some seven years later.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Carol B
Unregistered
posted
BINGO !
Will personally be glad to help you throw this DUCK in the alligator pit, so he will stop passing his ignorance along to other innocent victims.
Love and Hugs to you and yours, Carol
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Carol B
Unregistered
posted
ps- get thee to a lyme doctor.
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posted
So, actually I can not breath any easier. I did not think it was going to be that easy. I have read some of the links and talked with ones that had babys with lyme.
Guess I have to go around the Ped. Like I said before if she does test negatie, wooooooohoooo, but I would hate knowing all the information I do now and not doing anything about it.
I have looked at the bulleyes rash on some sites and they vary in sizes. You would think a man in Ped. pratice for nearly 50 years would read up on new information.
Posts: 24 | From Leitchfield, Kentucky | Registered: Jun 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Yes, YOu would think they all would be dying to be up to date on the fastest growing disease around..And it has so many unusual symptoms..
But no..They are stupid and Ducks!!
Many here can tell of the horrors of this illness in children and a few can address, the born with it issue..
I was at a seminar on Sat and the Dr said it can be passed from Mom to child in utero without treatment. It has also been found in breast milk, in tears, and in reproductive fluids.
Good luck..You may not find a literate pediatrician..It may be up to you to educate..But find one that is willing to listen and learn..
Give them copies of DR. B's guidelines, and other things in the newbie links..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey,
Don't panic....just sit a minute.
My suggestion is you get a lyme literate pediatrician, specifically Dr. Jones in New Haven, Conn. I don't know where you live, but is there a children's hospital in close proximity. I went to Dupont childrens hospital.
Dr. J ordered the tests for me after I called his office, I received the kits in the mail, arranged a call with the head lab technician at Dupont (some of these tests they are not familiar with taking), and took my kits in for drawing. I stuffed the vials into the mailers, and it was sent out their door within 24 hours.
When they are that young, a children's hospital is a plus. Cooperation is too.
If testing on your baby is your first priority begin this way. At the same time, schedule an appt. with either Doc J, or another local Lyme doc, as waiting lists appear to be getting longer.
Once results are in and history and exam taken, you will have a plan...either treat and with what for how long or not treat.
In all this emotional and informational chaos, there is a system...you will find it. You will get through just fine. But, don't frustrate yourself and the situation with ignorant doctors. Step around them, know that you can, and move on.
Here any time-
2Roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Okay, so a few months ago my DD was sent to the PCDC at our state childrens hospital. He only check for immune defincancys, which all came back negative.
Would I call him back and have him do the test?
I have put in my order for the test kits and even though the doctor I have spoken to local does not use the Igenex labs I might get him to sign the forms. He will get is office visit fee either way.
Thanks for all the info.
Posts: 24 | From Leitchfield, Kentucky | Registered: Jun 2006
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey,
Sorry to be so ignorant, but was does DD and PCDC stand for?
Is the children's state hospital within a drive where you can get there relatively easily? If not, a local lab will have to do.
I don't know about the doctor you are thinking of approving and receiving the results, but you want it to be someone that knows Lyme and it's coinfections. Some of the results require assessment.
Basically, some tests check for the bacteria and are called PCR tests. They either see the spirochete or they don't. The other tests are antibody measuring tests and require assesment of the positive bands, especially if the test comes back negative.
More importantly, the infection requires a Lyme doc to do a thorough physical because testing is only one piece of the puzzle. Each test has limitations.
So, maybe someone in Kentucky can refer you locally if Doc J seems too far out....I agree it's quite a distance.
Hopefully, someone will post soon that can help with that. In the meantime, think also of your wellness and reading up on the tests.
Hang In There, your making progress-
2Roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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