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advice please

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Old 09-05-2007, 03:48 PM   #1
Join Date: May 2007
Location: honolulu
Posts: 84
grace1908 HB User
advice please

I've been slowly but surely going through the medical process. I posted back in April I believe thinking that Lyme could be a strong possibility. My regular doc dismissed that as a possibility immediately seeing that it's been years since I remember getting bitten by a tick. However, since then seveal things have happened.

I am currently pregnant which is a blessing and a problem because I don't think I'm being taken as seriously about symptoms as I would be if I wasn't. Some new developements on symptoms are severe excruitiating headaches and I had an episode of seeing "stars" little white lights all around for a couple minutes. I had a CT done that showed "questionable calcification on brain" which is not normal for someone my age. I have a follow up neurologist appointment however, I passed the office visit last time (touch nose, identify object in hand and so on). I also had a terrible bout with upper respiratory infection with wheezing which required two courses of antibiotics to finally relieve symptoms. My Pulmonologist thinks I actually had bronchitis at the time with residual wheezing from it. Ever since I stopped the antibiotics I've been exhausted, sleeping up to 16 hours a day which is not normal pregnant or not. Do you think I could convince my neurologist to order a lyme test or even refer me to an infectious disease doc. What do you think my chances of Lyme showing up on a regular CDC test would be at this point? I understand being in Hawaii limits my options on docs and traveling at this point is not possible right now. Thanks again. Sorry so long.


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Old 09-05-2007, 04:03 PM   #2
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Join Date: Jan 2002
Posts: 5,799
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: advice please

Hi Grace. First congratulations!

How far along are you?

Infectious disease doctors are usually not the best to see for tick-borne illnesses. You really need to be evaluated by a Lyme doctor as soon as possible. Lyme disease can be passed through pregnancy and breastfeeding. It is my understanding that if the woman is treated with a safe antibiotic throughout the pregnancy and does not breastfeed, this can minimize transmission. You can have the baby's cord blood tested for Lyme at delivery.

The best and only Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. I highly recommend contacting his office for advice. Maybe he could consult with your doctor about testing and treatment.

You also may want to contact the Lyme Disease Foundation. Its member had a tragic experience with her pregnancy, but because of her efforts much more is now known.

You may also research to see if there are any Lyme support groups in your state. These may be good places for information and doctor referrals.

If you have Lyme, I hope you can start treatment soon. Keep us posted on your progress okay?

Old 09-05-2007, 05:36 PM   #3
Join Date: May 2007
Location: honolulu
Posts: 84
grace1908 HB User
Re: advice please

Thanks Ticker. You are always here for us. I'm almost 21 weeks. I can truly see the struggles that you all go through on trying to get a diagnosis. It seems like the only time anyone is taken seriously is if they have a bulls eye rash or the doc literally pulls off a tick. I remember it seemed that Lyme got a lot of headlines when people really started hearing about it (in what the early 90's or so)? However, now it seems like docs don't want to believe that it's out there. I think a lot of people would be feeling a whole lot better if it was understood and appreciated by the medical profession. I'm amazed at how many medical shows have a patient misdiagnosed for how ever many years only later to find out it was Lyme all along. Keep up the good fight for everyone that doesn't have a voice. One day you all will have to be heard.


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