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sarah92202
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[size=4][/size]Hello everyone. I have been lurking for the past week and have pm a few people and hugged too. It was a busy week last week, so now I can finally take the time to introduce myself. I have had Lyme for 10+ years possibly more. I had the "bull's eye rash in 97 and was told even though my WB IGM was pos. that I "didn't have Lyme" I waspretty sick for about 3 years and then went into a remission I idn't feel 100% but at least 90% and I wasd happy with that. I excepted the fibro diag. kind of, but not really. And then in Aug of 04 a month before my wedding it struck with a vengeance. at the time my son was also getting ill. He had the flu-like symptoms in 01 and had persistant neck pain sine then, but doctors just kept saying he was palying too many sports. I thought it very odd that my 12 year old son and I had could talk about our same pains and know how each was really feeling. So I searched continually for 2 yeras for someone to tell us what was wrong and finally in Oct 06 we both got our answer--Lyme. I have progressively gotten worse, he has luckily gotten better, but not before becoming bedridden and unable to attend school. But we owe his life to that wonderful man in CT, as do 1000's of other children. My son is now taking 8-9th grade together at school and on-line and is a high A student-again- but no sports. I however and more ill than I have ever been, and just seem to keep getting worse. I have been on ABX's on and off for 1 1/2 years, and got a Babesia diag. last Sept. so am on Malarone too. I am a walking text book on Lyme and have researched and studied everything that I can get my hands on. So I can be of help not only knowledgably but for support too. But I also need support. Most people contact me when they want Lyme info, including our local doctors. But there really isn't any support here in my town for me. I do all the supporting! So, it would be really nice to join your group and help and be helped supportively!! Sincerely, Sarah Post edited by: sarah92202, at: 03/24/2008 10:48 |
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Clayton72
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So glad you are here! This site has helped me so much - I have met great people on MDJ. I'm so sorry that you and your son both have Lyme. But, I'm glad he is doing ok and able to get through school... sounds like a very smart boy! I think there is a pretty good mix of people on here - let us know how we can help you! Glad your town has you... if we could only get our doctors educated in this disease like we are?! We've all got work to do. Welcome! |
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ConnieD
Posts: 492
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hello and welcome! We are always glad to have new members. The more the merrier. I'm so sorry you have had to watch your son suffer with the same pains. That must be agonizing. I have three children (they've all tested negative), but the thought of them having Lyme because of me is agonizing. When they complain of neck pain, trust me, I am listening! It's so scary. However, since I was able to get better, I'm not so scared anymore. The tools are out there to get better. I chose the alternative route. It really helped me. I won't bore with my story here, it's plastered on posts all over this place. In a nutshell, I was bitten by a tick in 1991 or 92, symptoms began slowly. In 1998, I had my first baby and symptoms went into overdrive. In 2004, I had my third baby, and my symptoms spun out of control until I found the right person to help me in 2007. Now, I am better. One of thethings about this website that has helped me so much was the validation of my symptoms. I always played down my pain to others, but now I don't have to. It's really good to have others who identify with our struggles. How kind of you to spend so much time helping others. I hope we can help you! Please do not take anything I say as medical advice. I am not a doctor
~Lyme Disease Support Group Leader~
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sarah92202
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Lymie & Clayton, thank you for the replies. I am glad to have found this site Everyone seems to be real nice, and there is alot of info. I have been slowly trying to read peoples posts and stories. For several years I have been debating with myself as to whether I had Lyme and babesia before I had my son. I asked Dr. J if he felt that my son was born with Lyme and he said no, that my son would not have thrived and excelled in school and sports the way he did. He was always ahead of the other children academically and athletically. BUT!! I had an embedded tick in my leg in 1989 and became very ill. 3 weeks in bed, thought I was gonna die. I dropped from a size 14 to an 8 in that time. I NEVER felt the same again. I had a horrendous pregnancy. (My doctor said please don't have more children--they will be motherless. I went into false labor in my 7th month. I was on bedrest and went into labor everytime I had to go to my check-ups. They continued to stop it with meds. Then in my 36th week I got PIH and they had to induce labor immediately. I had a retained placenta and went into shock and was bleeding to death. My husband was told I would not live through the night and to make arrangements. (does most of this sound slightly familiar?) Anyway, somehow I lived, but was sick for a year, I dropped down to a size 2, I'm 5'11 ( so not good). I slowly regained my strength and weight and got better, never like before the "virus" but not sick either, until 1997 when I got the bull's eye rash and started having all the Lyme symptoms. OH, I forgot I did have "viral" meningitis in 1995 for a month, but recovered wonderfully. From 97 to 99 I felt pretty crappy, migraines, pains, swelling joints, bad knee problems, fatigue. Then in 2000 I got better, alot better, was coaching soccer and basketball, boating, camping, hiking, swimming, owned my own business. Then Aug. 04 a month before my wedding I started getting sick again. Now I am more sick than I have ever been. --My son didn't start having problems until he was 8, he got a 2 week "virus" and then neck pain that never went away. He slowly got sick over a 4 year period until he was bedridden and couldn't learn. I never saw a bull's eye rash, but he had fifths disease. His Elisa was neg. in 05, retested by WB in Oct 06-- WB IGM-neg, no pos. bands, WB IGG only 41, 30 & 66 pos and with one + each on those. Sometimes I still wonder if he really has Lyme, but the ABX's treatment worked wonders for him. I guess he was just such a strong athlete that his body was able to fight it off so well for so long, then when his Dad and I got divorced his dad deserted him, and he got sicker. Now he is doing so much better, he doesn't play any sports, but he plays the guitar, the only thing he complains of is the neck pain and some fatigue. WOW, I didn't mean to make this so long!! I have 3 appt. today, so I have to go. I know that other women with Lyme have had similiar pregnancy problems like mine and that is why I think that I had Lyme before my pregnancy, but my son's history doesn't add up, maybe he got Lyme in 2000 when he first got sick, not from me. I don't know !! Tell me what y'all think!! Sarah[size=4][/size] |
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jaime1978
Posts: 830
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Sarah, welcome...nice to have you here, and great to have another knowlegable person. You will be filled with support here, we have a very loving group. our little online family. I'm glad your son seems better now, I know it's a nightmare to watch our children suffer. Stick around, and get some hugs, and get support,and give some too 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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sarah92202
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Jamie, thank you for the welcome!! [size=4][/size]I hope that you have a good weekend!! Sarah |
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Julie4848
Posts: 557
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Welcome: You sound like me, I got lyme in July and was planning my wedding for September, it was just awful, the happiest time of my life turned out to be the worse year of my life we even had to cancel our honeymoon due to me being so sick..How I got married that day is beyond me, god was on my side... I sometimes think I'm in remission...I was lucky I found my tick on me and we pulled it out and 8 days later got so sick Ithought I was dying. We on and off abx from aug until the middle of dec. Had to stop them all due to me being allergic to 99% of abxs on the market...So next month I'm going the natural route, as I don't have a choice. Do I feel better, yes, but no, the past week I'm not feeling so hot, and it scares me to death. But I also have a lot of stress at the moment, a sick mom, dog, and they found a lump in my breast I have to deal with, so that may be why I feel so awful the stess... I hope you start to feel better.... Julie
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sarah92202
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Julie, thank you for the welcome! Sorry to hear about your allergies to ABX's. I hope that you can find some natural remedies to help. I hope that you get feeling better soon. I don't think that in most cases straight ABX's are able to do the job anyway, we need to repair our immune systems and detox all the crap that has made our systems weak. I'm right there with you with the breast lump too. I just had my 5th mammo in 12 months 2 days ago. I have a lump that they are watching for changes. They told me that I am now going to need another ultra-sound, which pretty much tells me that they noticed changes. But the techs cannot tell you that, but I know the routine. I hope that everything is OK with yours, it semms that we Lymies have alot of cysts, fibroids and tumors. My doctor told my husband yesterday that he thinks he has a pituitary tumor. Off to the MRI we go. I am so worried about him. I feel like we live at the hospital, I've had cysts removed, polyps removed, fibroids in uterus and breasts, now I have a blood clot. He has had several tumors removed and now the Pit. and when I looked up all the symptoms for pit tumors I had more than he does, so am worried about that too! Does anyone recall if they have heard of several Lymies having Pit. tumors. I know that I have heard of them having thyroid tumors too. Do you know what your breats lump is yet? I will say a prayer for you and hope that everything is OK. Sincerely, Sarah[size=4][/size] |
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Julie4848
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HI: Boy we sound alike...I'm 48 going on 98 I feel at times...lol I also had fibroids in my uterus had a total Hystomery (however you spell it) 5 years ago. I also have simple cysts on my kidney that they watch. I also have goiders on my thyroid. My whole family is like this, not just me.... I have no idea what the lump is from on my breast...I have to have some special test on the 7th that takes 2 hours. I'm on HRT (Hormone replacement) so I have my Mamo every year since I turned 40. This is something new...My older sister has the same thing...I don't blame lyme for any of this, I have had a lot of problems since birth it seems...lol I hope your husband will be ok, I have never heard of that... Yes it sucks not being able to take abx's, have been like that all my life, I was lucky I could do two and 1/2 months of the Ceftin for my lyme. In August I was on doxy for two weeks, had to stop, then amoxcillin for 22 days, had to stop. Took a break, got married saw the allergist and I went on Ceftin from Oct 16 until Dec 18, I have been on nothing since.... I just want to feel good for our honeymoon, We are going to Rivera Maya in Mexico for 6 days...The problem is when I got sick with lyme I could not be out in the heat, it hurt my skin so much, I'm only praying it won't happen while there... After I removed the tick (back on neck) 8 days later it started with this awful burning on my chest, neck and knee pain, then this awful flu for 3 days as it was July I knew I did not have the flu and something was really wrong...I finally had the western blot in Oct and it came back positive...All co-infection were negative...They did say I had bartnella at some point in my life (I have had many cats) but he said it was a past infection and 99% of people in life have been exposed to it... So that is my story and it sucks... I will pray for your husband, I know its hard when both are sick... julie |
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