posted
I feel like vomiting when I think of how disgusting the Lyme situation is in our country. I was misdiagnosed for about a decade. I was told all of my symptoms were mental health related.
My little 2 yr old son now has Lyme, contracted during pregnancy, when I thought I only had a horrible case of anxiety and depression.
It's one thing to misdiagnose me and keep me sick for years. However, to allow my baby, who never went for a hike in the woods or was never even near a tick, to contract it from me because I never knew I was infected and was not treated, because of politics????
I cannot wrap my brain around the thought that some cheap antibiotics while pregnant could have prevented my baby's suffering!
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I don't know if you are religious or not, but someone told me the other day to pray to Mother Mary. Worth a shot, and might give you piece of mind.
You should have never been misdiagnosed either. TBI's are way too common to be ignored. Something fishy is going on.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
You can never say too many prayers. I just need to pray for acceptance because what's done is done. I can't un-infect us. I can only get us treatment.
I have never been a conspiracy theorist. However, this is all just too weird. I agree with you jackie51, something fishy is going on.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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posted
A bunch of old men in bad suits just won't admit they were wrong on this one. And doctors as a collective aren't going to risk their livelihood to fight for us even if it means innocent people are going to suffer horrifically.
Aperture, I'm so sorry.
Posts: 184 | From taking pills | Registered: Oct 2011
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posted
aperture... Me and my daughter are in the exact same situation. I went misdiagnosed for 13 years (I was diagnosed when she was almost 3). It is outright maddening. I just want you to know that you are not alone!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I hear ya. Both my kids tested positive, but were also bitten; my son got the rash.
I went undiagnosed for 22 years - "fibromyalgia" they said. Yeah right.
Both kids were born during that time, and were extremely fussy, beyond colic. So, I believe they got it from me first then the double whammy of being bitten.
You are right; there is 'something' going on. "The old men in the bad suits" - I like that description.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
searching4truth and linky123: sad to know that you guys are in the same boat. However, at the same time it is comforting to know that we are not walking this confusing, upsetting path alone.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my daughter was born with it OR i gave it to her thru breast milk for 3 yrs (no comment..)
she also was not dx for 10 yrs-even tho she had sx
i wasnt dx until she was ...
and we began our journey: mom, 4 kids, one dil, one grandchild all pos and txed
everyone is ok now...so please get your anger out somehow for your own peace of mind, but then put your energy into getting you and your child well
be glad we know as much as we know now...get both of you as good quality tx as you can as soon as you can. good luck. it sucks. but dont let them win.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Aperture, There is a member of our Louisville support group who told her very compelling story of her own journey last month. She's convinced she contracted Lyme in Utero. Look forward to meeting you on 1/17 at 7pm.
-------------------- Condemnation without investigation is the height of ignorance. Posts: 30 | From Louisville, KY | Registered: Oct 2011
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posted
I wish I had been there to hear her story Final Equinox. I am eager to meet the group.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
You are not alone, and very sadly, as this disease continues to spread, there will be more mothers passing it to children.
I *knew* something was going on with my child from the get go (I have 2 other completely, healthy children) but it took until she was 6 to finally get to Lyme and co.
I did know her immune system had some serious issues, tho... Sending PV's-- All we can do is move forward the best we can to healing.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Me too! Same deal. Misdiagnosed many, many times. Given steroids and had 2 children. Luckily my oldest is not as sick, and has few symptoms. I wasn't as sick when I had her.
My youngest is much worse, and has been in treatment for several years with llmd. She tested + by cdc standards on a labcorp test. She was tested when she was a baby by Igenex and was eqivocal.
So, anyway, both are doing okay at this point. My younger dd has allergies and asthma and thyroid issues. It's sad that she has to take a bunch of pills each day all because no doctor could dx and tx me properly for 20 years.
I feel your pain
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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It saddens me that you guys had to go through the same ordeal.
I can only take comfort in the fact that knowledge is power. At least we do know what we are dealing with. So many other people have no idea Lyme even exists, let alone that their kids may have it. (I know I was in that group just a few months ago).
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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posted
My personal goal is to recover my health as much as possible (it seems my Lyme was caught relatively early, 5 months or so), and get active on the public awareness front.
I found a local 125 seat theater that can be rented for $250 for 10am showings. Local support group members have expressed interest in doing a showing of Under Our Skin for family and friends. My LLMD has offered to come to town for a Q&A afterwards (very courageous Doc).
I'm also reaching out to a couple of entomologist friends to hopefully plan a professionally performed and documented tick collection expedition this spring to the site I was bitten (a hugely popular KY tourist destination) and send them to Igenex for testing. It keeps me up at night thinking of families camping night after night at the site I was bitten...with no notification of the presence of Lyme.
Hopefully it will be much more difficult to play the "Lyme is not present here game" with that kind of evidence.
-------------------- Condemnation without investigation is the height of ignorance. Posts: 30 | From Louisville, KY | Registered: Oct 2011
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-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
aperture,
On a more positive note, all three of us are in remission. So, I hope and pray the same for all those still battling this awful illness.
Yes, it is good to know we are not alone in this. I am so grateful for lymenet.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
How did you know your kids had it? We were diagnosed when our son was just over a year old, we think we got it after he was born. The fact is we will never know when or where we got it and can only speculate. Even if we didn't have it during the pregnancy our son went with us everywhere since he was born.
He has been tested three times and all negative. He was tested once two weeks after taking amoxicillin for an ear infection with a western blot and was still negative, both of us tested positive. Further, we were exposed to pertussis and all three treated with abx with no herding or adverse reaction about a year prior to diagnoses, that's why I think we caught it early.
Just the thought of my son having this is devastating. He doesn't really have any concerning symptoms other than recently he began getting severe ear infections and croup, as in three or four times each in the passed three months.
Any response will be greatly appreciated.
Edit:
I would like to express my deepest sympathy to all of you with children who were diagnosed, I can't imagine what that is like. I guess at least you know and are getting them treated. I just know what getting this in our late 20s was like for my wife and I, I can't imagine knowing that my child was born with this or had it at such a young age and how that will change the way he will live his life with Lyme in his body waiting to exploit any weakness.
Posts: 80 | From US | Registered: Aug 2011
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I completely understand. My son just kept getting sick frequently (ear infections, sore throats). At times he would tell me his legs hurt. He also started having sensory problems and autism traits.
I wasn't sure if it was Lyme or not. I asked my LLMD if I should get him checked and she told me it wouldn't hurt. Thankfully, I did. He is Igenex positive.
He has been in treatment for almost 2 months. He hasn't had to go to the pediatrician at all since Dec. (This is the longest he has gone without a sick visit). He is also making huge improvements with all of his symptoms.
I got him checked because I just didn't know what was going on either way. I figured, if everything turned out normal, I'd just be out the cost of the LLMD visit.
I needed that reassurance, if things actually were ok. I kept thinking about the mom in "Under Our Skin", whose son was born healthy, then year after year, he deteriorated to the point of not being able to talk. I could relate because, looking back, I wasn't a healthy pregnant mom while I was carrying him...because I was sick and didn't know it.
Was he tested by Igenex? That's the big question. If so, did absolutely no bands show up?
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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posted
That's the thing, we need to get the results and check it out. They pretty much just called us and said negative. One thing in his favor was absolutely no birth defects, perfect score on the rating for new borns, and no developmental or growth issues. Everyone, including LLMD, says if he was born with it we would know. From what I see though it may not always be the case.
Thanks for your responses!
Posts: 80 | From US | Registered: Aug 2011
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