I was suppossed to protect them. I did not. When my one daughter had the bullseye rash, I took her to her pedicatrian (GA) and was laughed at and told ringworm. I believed them, only to watch my daughter suffer.
I got bit 2 weeks before her "ringworm" appeared and was hospialized twice. It was 3 months after the ringworm when I started to think lyme. Her Dr wrote in my daughters chart "maternal anxiety and imaginary lyme disease" I had to go out of state to get her treated which wasnt until May. She is still very symptomatic and I just cry when she tells me "Mommy, I am so tired" or has anxiety.
Her twin sister never had anything. Only recently she told me her legs were getting tired when she rode her bike. I had her tested for my own reassurance. She is CDC+ too! DId she get this from either me or my other daughter. She drank after us.
I am overwhelmed with guilt. I tell them I am so sorry all the time. What have I done to my children? I am suppossed to be their protector. Guess I did a hell of a job!
Posted by Dekrator48 (Member # 18239) on :
Dear kimmie,
Please do not blame yourself for any of this.
It is the fault of the mainstream medical community.
You are not a physician.
You took your daughter to the Dr, just like anyone would have.
You are not letting your kids down.
You are actually a GREAT MOM who took it upon herself to investigate further when the Dr's we are supposed to rely on let us down.
Your girls will likely get better and not suffer for the rest of their lives because of YOUR persistence.
Knowledge is power. Keep up the good work, kimmie.
Let go of the guilt and feel empowered that YOU know what to do, and we are here to support you.
Posted by BoxerMom (Member # 25251) on :
I have to agree with Dekrator.
You are a GREAT mom who has taken it upon herself to get her children well.
What parent gets a Lyme test when her child complains of tired legs? What parent even takes that seriously?
YOU DO!
Your kids will get well. It's the IDSA and CDC who did this to them, not you.
All doctors should understand the prevalence and clinical presentations of Lyme. They do not. So we get turned away.
I'm glad you did not give up.
STOP apologizing to your kids. It's bad for all of you. Be proud of all of you for traveling to doctors and taking your meds. Be hopeful of complete recovery.
That attitude is much more accurate and healing.
Posted by Keebler (Member # 12673) on :
- Sadly, the medical system let you down. While the official term in your file may be MBP, they may have stopped just short of that for you. To fight the wicked system further could have had you stripped of your parental rights regarding your child's treatment.
I'm glad she is seeing a LLMD.
Tread lightly (just don't hire) with the regular doctors. Here is the way they think of lyme parents and even lyme patients often get the term: M�nchausen. ------------
Munchausen's syndrome by proxy and Lyme disease: medical misogyny or diagnostic mystery? -
Posted by Remember to Smile (Member # 25481) on :
Dearest kimmie, PM sent.
Sounds like your girls receive better medical care than most of the children in the Mid-Atlantic region!
Your kind, caring, perceptive heart is clear. I praise God you're a mother who listens, and seeks care for her girls. We're ALL BLESSED that you're tenderly raising Lyme-Aware girls.
May your first daughter find renewed energy and peace this Christmas, and may "the biking twin" be spared further symptoms.
I pray you'll all heal swiftly and completely.
Just hug 'em, and start listing all the good things that happen every day. Smile
Posted by kimmie (Member # 25547) on :
Thank you everyone for your kind words. It means so much to me. You are right that the IDSA/CDC did this. It is just hard to see the most precious gifts I ever recieved suffer.
We have always felt so blessed because they were born 8 weeks early and were in the NICU for 1 month. They came out without any problems.I would pray to God Thank you for making my babies healthy. It is just very hard emotionally.
I appreciate everyones advice and I know I need to stop apologizing to them. Thank you everyone.
Posted by missing (Member # 22437) on :
My daughter was probably born with Lyme 15 years ago.
Long story,,, but the medical system let us both down.
We are now both getting treatment.
It is not your fault. I read "Lab 257" and it made me feel a lot better about it not being my fault at all.
Posted by lymephobic (Member # 17556) on :
kimmie-
I read this and cried. You are NOT a bad mother in any way, shape or form!
I just had my kids at their ped for their well visits. WHen I requested that they both be tested for lyme and bart I recieved a whole lot of reasons why they should not be tested and that the insurance co may not cover the tests.
My 8 yr old son has been having headaches on and off for 2 years and gets strange rashes. My 11 yr old daughter has foot pain and also gets the strange rashes.
In my mind...those are plenty of reasons to test. I have put off asking for the bart tests, but have a yearly western blot done on both kids. If the bart comes back pos for either of them I will feel horrible for letting it go as long as I did.
When I mentioned bart the dr kept saying "that is normally from a cat scratch, you can't get that from ticks" I actually had an in depth discussion with the dr and the med student with him about bart and ticks and how prevelant it really is especially here in NJ.
In the end he wrote the scripts for the blood tests but I left there feeling sad and angry. I felt like they looked at me like I was crazy.
I have been there...and if I can keep my children from being there...I will do or say anything.
I am sorry for my rant...didn't mean to hijack this thread. Just wanted to let you know that you have done, and continue to do, EVERYTHING in your power to take care of your children. It is not your fault that the general med community is filled with ignorance and greed Posted by Jane2904 (Member # 15917) on :
Kimmie you are not a bad Mom!!!
Your a great Mom because you refused to give up and listen to Non LLMD's.
It is hard but your children will get well . They have a great Mom who searched out a great LLMD.
Hang in there, Hugs from one Mom to another.
Posted by Tammy N. (Member # 26835) on :
I am so sorry for what you are feeling. I hear the guilt in your words. Please try to release it (it's so important). You need to heal as much as they do .... in body, mind and spirit.
You are a caring, loving mother. They are blessed to have you. And you to have them.
Wishing you peace, Tammy
Posted by Keebler (Member # 12673) on :
- onbam,
To clarify,
While not specific to lyme, Cheney (if Paul Cheney) has contributed quite a lot of fantastic research material regarding cardiac complications of those who have stealth infections and support methods that help. -
Posted by 17hens (Member # 23747) on :
IMO, I believe when we hold on to guilt, it's very difficult (impossible?) to move forward. Guilt ties us down, holds us back.
Kimmie, you are not perfect, none of us are. You don't know everything, none of us do. You don't know the future, none of us do. You are not the reason your girls are sick.
You love your girls and would do anything to help them. That's the important thing.
I agree with Tammy. It's vitally important to recovery (yours and theirs) that you let go of the guilt and move forward.
As children, they will need your help, your ability to advocate for them. They will need you to hear them and help them.
We are all here to help you in any way we can. We walk this road together. You are not alone.
You are a good mom with two very special blessings.
Posted by kimmie (Member # 25547) on :
Thank you again everyone. It never ceases to amaze me the wonderful support and caring available here. You all are wonderful to reach out to me when I know each and everyone of you has their own struggles too.
I truly appreciate your support and encouragement. It means so much to me. Thanks again.
Posted by apljack (Member # 14233) on :
I share your pain. I've got two kids and I'm struggling with what to do with their health issues. My head aches today just from all the stress. I just took one to a specialist, need to test for everything. My younger one has excrutiating anxiety and is getting me up every night. Husband says it's normal, I'm going crazy and am exhausted from it all.
I really don't know what to do some days.
Posted by 17hens (Member # 23747) on :
quote:Originally posted by apljack: excrutiating anxiety and is getting me up every night.
This sounds like my daughter a few years back. Any way she could have Bart? I very much hope not, but it struck a chord when I read that.
Posted by hhoskins72 (Member # 26190) on :
I think I somehow passed Lyme to my daughter as well. She never had a bullseye or any bite of any kind on her, I did, and 3 months after I got sick she started having symptoms.
I feel so horribly guilty.
Her school told me she was faking so she could stay home with me. I almost believed them, until she started cring that her hands and feet felt like they were on fire. She was having crushing head pain, leg pain, vomiting, and could not get out of bed.
I begged her GP to put her on amoxy to see her reaction. After 4 days she was writhing in more pain than she had ever been in.
She tested positive for babesia and LD thru Igenex.
One night her head pain was more than she could bear, and I took her to the ER. They gave her morphine and sent her home.
The next day CPS called me and told me I was being investigated for Munchausen by proxy syndrome.
The hospital had contacted them and said I coached my daughter to say she had head pain so I could get attention. The report said that I made up a syndrome called "Bambisio" and said my daughter had it.
It is enough to make me vomit.
Posted by JunkYardWily (Member # 24271) on :
quote:Originally posted by hhoskins72: The next day CPS called me and told me I was being investigated for Munchausen by proxy syndrome.
The hospital had contacted them and said I coached my daughter to say she had head pain so I could get attention. The report said that I made up a syndrome called "Bambisio" and said my daughter had it.
It is enough to make me vomit.
sounds like its lawyer time. i would not only get one to defend yourself but to sue them for all they have. who cares if you win or not. screw those pieces of #$#@!
i cant stand drs.
Posted by lyme in Putnam (Member # 11561) on :
You did nothing wrong. Please, when it comes to this, I had the same situation with my son, took him to his regular pediatrician, bloodwork came back all messed upp, took him to reputable infectious disease dr.who told me he had RA, had him subjected to injecting the water on the knee taken out out in Long Island which is 2 hours away, just to take a fluid out that they gave a medicine to clear it up and blood and tissue came out because there was no fluid. Then found Dr. J. Three years of antibiotcs started at age 9, ended up at 12. He's 15 now and healthy. Didn't know any better. Its not your fault. We all don't know anything with this except we were taught to trust the doctor. They don't know half the time what they are talking about, and when they are, keep them. Don't be hard on yourself. You didn't know. Neither did I.
Posted by Karen Mc (Member # 23354) on :
Kimmie..I know many have weighed in on this discussion (and that is great!) and although badically what Im posting is a repeat of what others have said...I just felt my heart hurting for you and to post.
I know exactly how you feel as I have gone through the same thing with my son who is now 18.
He complained of leg pain and other symptoms (headaches etc) for years and the Dr said it was "growing pains" hogwash....but of course I didnt know that at the time.
Anyway there is so much more I could say but I will cut it short...
basically I have felt as you do many times...like its my fault and I failed him but then I try to remember after learning aboutt my lyme
I REFUSED to give up in finding out the truth about him.
Even AFTER our GP did elisa testing and said he didnt think it was Lyme..I REFUSED to give up.
I had to DEMAND!!!! a western blot..the GP didnt know how to administer testing, NEITHER did the Lab Dept at our local hospital (UNBELEIVABLE)!!!
Well needless to say 2 hrs before his prom I got the offical results back (even though I already knew because of his symptoms the results) I was crushed..
I have cried many times wondering if I in turn was responsible for him getting it...
BUT ATLEAST now we know and hopefully with him getting treatment he can AND will have some quality of a better life.
He is seeing the same LLMD I see, its hard as insurance didnt pay for any testing or visits but it is worth the sacrfices.
SO on that note.. I just wanted to say...
YOU ARE A WONDERFUL MOTHER and even though you didnt catch it right away YOU DID CATCH it...
Praises to you and I wish you and your girls ALL the best.
Posted by onbam (Member # 23758) on :
Keebler,
I meant Dick Cheney. But will remove.
Posted by bashibazouks (Member # 28286) on :
I'm just repeating what everyone else said but I think you are a great mom! My mom feels this way sometimes too (I got Lyme as a baby), but I am forever grateful to her for taking me to a doctor and caring for me. Even if the doctor botched up the diagnosis and I didn't get real treatment for 20 years, I always had my mom there taking care of me and sympathizing with me. It would have been a much bigger and lonelier challenge without her help and love. I'm sure that's how your daughters feel about you!
Posted by apljack (Member # 14233) on :
17hens--getting her in to see doc and hopefully will get tested for everything. I think it's Bart from the cat, not lyme from a tick. But, it makes me wonder about this kid. She was born crying, had reflux, cried the whole first year, never went to anybody, has always been constipated, leg pain, headaches. When she gets tired, she hits the wall big time. Also, when she's tired in the car, she has to lay down, she can not sleep sitting up--to this day she will scream her head off if she's tired and can't lie down. She's always been high maintenance and I think we've always figured it was her personality. We'll see after the testing I guess.
Posted by 17hens (Member # 23747) on :
Hmmm... that would be nice. Bart from the cat is self resolving, I think.
From the sounds of it, our girls could be twins. Except mine is almost 15.
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