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12/20/2007 15:09
rocheleau
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HI,

MY name is Amy and I was recently diagnosed with lyme. Four years ago after the birth of my son I came down with a "virus" that included a myriad of symptoms. Four years later I am still trying to get answers. I have seen so many drs. none of whom helped at all. Their responses included,"well you look good" or "you are too symptomatic so we can't help you. Go home and see what happens."

I am finally seeing a lyme specialist,but I don't understand the diagnosis if all tests come back negative. I don't recall being bit, but i have camped alot and live in northeast where it is prevelant.

My last CBC panel came back and my cell counts have all dropped very low below normal. Is that normal with lyme? My primary said,"don't worry." HA, I have a 4 and 5 year old who need a healthy mom, of course I am going to worry.

I am ranting now, but I guess my main questions are:

How can you tell it is lyme if all tests negative. HAve others had this same diagnosis without proof?

Does it affect blood counts?

I am on Ceftin, which is helping my symptoms, but what happens when I go off of it?

What kind of holistic approaches have worked for pepole?

Thank you for all your help and support in advance. Right back at ya!

AMY

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12/20/2007 15:13
Julie4848
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Hi Amy and welcome:

Where did you have your lab work done? Ingenex is really the only lab to use. I had 5 negative results. Had it sent to ingenex and it came back POSITIVE for lyme. Read my profile and it will explain my history.

I'm also on Ceftin, it helps, I've been on it since 10-16 but starting to have a reaction. I am going Holistic at the 1st of the year. I've had lyme since July 22, 2007. After I start it I will post more about it.

Where do you live?? I live in Chicago and there are not many LLMD's around here, I see my family doctor for lyme and he is great about it.

Julie


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12/20/2007 15:14
Julie4848
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Oh, all my blood work is AOK...White count is a little up but for me that is very normal....


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12/20/2007 19:35
Jenn56
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Hey Amy,My name is Jennifer,i am also a mother of two.I tested neg 4 times on local labs,then on a IGENEX igg and igm i tested POS.But my llmd did not wait 4 those results he had the pic put in two months b4.I had seen a ton of docs and they all said the same thing,that i was crazy,But my llmd new the second he looked at me.I also never seen a tick on me ever ,and never had a rash..But i do travel to capecod MA a few times a year.I have been on Ceftin over one year now,every time my llmd trys to take it out i last 2 days,and then hell hits.He has told me that i will be on meds 4 years....This disease sucks,at times i feel so alone,because my family and friend dont understand at all.So thats why im here to meet great people who are alot like me...JENN
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12/22/2007 13:36
jaime1978
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Amy,

most people have a diagnosis without positive blood work. Lyme is mainly a clinical diagnosis (based on symptoms). Read my story, it will answer many of your questions. If you look under the group leader section you can read some there, and there is more in my profile.

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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12/22/2007 17:36
rocheleau
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Thank you all for your help and helpful tips. I saw my dr. yesterday and she feels confident with the lyme diagnosis.

If anyone is looking for a good lyme specialist or infectious disease specialist in Massachusetts: Dr.Deborah Hoadley out of Longmeadow, MA. She is very caring and very thorough. I have been to countless number of drs(as most of us have)and I highly recommend her.

Take Care!!

AMY

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12/23/2007 08:28
Jenn56
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Hey Amy how far is that doc from the cape?I travel to cape cod MA,a few times a year,i spend the summers there as well,im pretty sure thats were i got bit,but like i said never seen a tick and dont remember a rash.Im thinking about moving to the cape ,so i started to look up llmds,So i was just wondering how far that is.Ill travel if i have to.JENN

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12/23/2007 11:17
rocheleau
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Hi Jen,

Well, my sister lives on the cape(Mashpee) and it takes me about 4 hours to get to and fro(I live in Northampton, which is half hour from Longmeadow.) Also, that is with my kids and lots of stops. So I would say probably 31/2 hours.

I have to say she is worth it. She does a lot of tests to rule other stuff out, much more indepth ones, unlike regular drs. who do basic. She would want to see you monthly,so you may want to wait until you are out here for extended period of time.

Her # 413-567-0600

address: 175 Dwight Rd.suite 203 Longmeadow,MA 01106

Let me know if you any other questions.

Take Care!

AMY

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