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My story...

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Old 04-15-2009, 09:45 AM   #1
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Jenne HB User
My story...

Wow I haven't been here in so long. I was looking at another top in 2006 and came across the lyme board! Then I have moved and am so glad to have found again! I have thyroid issues now..which I am hoping doesn't pop up the lyme again. But, I have been successfully in remission for years now!

About 9 years ago I believe...I lived in South Jersey and found a tick on me in November! I pulled it out..of course not correctly because I didn't know. I think I squeezed it's gut into me. The site burned and became swollen.

I had a friend online who I used to talk to. She had lyme disease and was very sick and disabled from it. She is an angel. I have lost touch with her and hope she is doing well! Anyhow, I told her what happened and she told me to go to the doc and get it documented. I did and they told me the usual...if I got flu like symptoms or a rash , come back.

Well , I never got a rash. Two weeks had gone by and I had a sore throat. But I never put the two together. ..even though they told me "flu like" symptoms. I guess I must have thought I would be on my back...not just a simple sore throat. But then, half of my face went numb. I thank god for this symptom or else I would have never gone to the doc. I went online and looked up facial numbness and lyme popped up..and it made sense.

I went to my doctor and she put me on an antibiotic..i think for two weeks. I felt like crap but after a week passed by, I started feeling great! I finished my medication and with 4 days or so ..I crashed. I had so much pain in my body in was unbelievable. My legs didn't want to work when I was walking ..they felt weak and I felt like they were not attached half the time. I was tired . I called my doc but she said that I had taken the antibiotics and if it was lyme it would be gone by now I had to go get more tests. I sank into depression. I remember sitting in a corner crying. My kids didn't know what to think of me. I felt horrendous. I didn't even want to get out of bed.

I went through all the stupid testing that they make you go through. Sjogren's disease, lupus, cancer, ms, you name it ..I was tested for it. I kept saying.."Why did I feel better on antibiotics and felt worse when I went off?" "can't I go back on?" . But of course they answer was "No".

Meanwhile I was talking to my angel and she explained to me the controversy and told me what to do. I went on lymenet and found an LLMD. I went to her and got tested. She said I was positive and I went on biaxin. I tolerated it well. I would have the big die off of the lyme bugs...and felt terrible but then I would feel great again. I ended up moving out to pittsburgh and found an LLMD out there. He kept treating me. After a couple years, I was feeling normal and they were taking me off the medicine.My last symptom was floaters..

But then , I got pregnant. We never talked about what would happen if I got pregnant. I had no idea that I could pass it. I though..hmm I better call and find out. I called the LLMD..and they told me that I should go on amoxicillin for the entire pregnancy and that yes I could pass it. I shouldn't breast feed and that they have had great experience with amoxicillin and pregnancy.

My pregnancy went by fine..No problems .. I had a beautiful healthy baby girl..or so I thought.

I felt great and went off the medication and have been fine ever since. However, at about 6 months old my daughter would cry at more like scream. I had taken her to the pediatrician who gave me ferber's book and told me that my daughter was manipulating me to bring her to my bed. I would bring her in bed with me so I could keep an eye on her. I kept saying..I didn't think this was her manipulating me..I think she is in pain. No one would listen. She kept grabbing at her back and after a month or so..I noticed she had a breast bud. I took her back to the dr and they said she had premature thelarche..which is common and it goes away.

She still seemed unhappy at I brought her back and insisted that I see someone. The premature thelarche wasn't getting better. Infact her little bud was getting bigger. So finally I was sent to a pediatric endrocrinologist. She did blood work and an mri and we found she had a cyst on her brain. I forget where it was..but she said it is common and doesn't need anything done to it..But occasionally it can turn into cancer..but it was rare. That scared the poop outta me. The cyst puts estrogen into her system...which is why the breast bud happened. Then I kept mentioning the grabbing of her back and she did it in the they gave her an ultrasound and found ovarian cysts. I thought this was strange and I started to think..could this all be due to lyme? The pediatric endo was great and said for me to look into it. She told me eventually she could control the cysts with birth control...

I ended up calling up my LLMD in NJ and asked her to see my daughter . She did and tested her..sure enough she was positive! They gave her antibiotics..This was all when she was about 2 and now she is 7..and doing well. I believe they gave her zithromax and she has been off for years now. She stopped having symptoms and her breast bud stayed the same size. The poor thing used to have a monthly cycle..she would become very angry and irritable one week out of the month...but is ok with that now too. Every now and then I see her breast bud come back..and think oh no..but it goes back down. She reacted so poorly to the sedative when she had the mri..they haven't given her another one..but if she starts having problems again..I have to take her back and get it done...

So we aren't out of the woods yet..but it goes to show how nasty this disease is. Now we are good... but who knows. I have thyroid issues now and am reacting poorly to the medication. I don't think it has anything to do with Lyme since it runs in my family..but I pray it doesn't bring back my symptoms.

But I will tell you what..I have learned to stand up for myself. I am not crazy. I was sick..and no doctor is going to tell me it's in my head . No doctor will ever tell me again that it is in my kid's head and she is manipulating me!!!

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Old 04-15-2009, 05:57 PM   #2
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Re: My story...

Hi Jenne, Welcome to the board!

Wow my heart goes out to you and your daughter. What a nightmare!

I am wondering wouldn't it be a good idea to take her and yourself back to the lyme doc and get re-tested? You know every once in a while just to make sure you both are cleared up.

Thyroid problems can be from the lyme.

I hope you and your baby girl beat this crap!

Yes it is amazing how ignorant doctors can be.

Sending you many Prayer's and good thoughts!


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