Friday, March 18, 2011

Congenital Lyme Disease

Today, I'm going to breach a topic that has been off limits in my blog--congenital Lyme disease. The reason it has been off limits is because it hits a little too close to home for me--it involves my own precious two children. If you know anything about Lyme disease, you are probably aware that every aspect of it is hotly debated. But if Lyme disease itself is controversial, it's got nothing, and I mean nothing on congenital Lyme disease.

If there was an accurate test that could say whether or not someone has Lyme disease, my life, and the lives of so many others would be very different. I mentioned a few weeks ago that I had blood work done at a different lab and I tested CDC positive for Lyme disease. That was nothing short of a miracle! However grateful I am of that miracle, it does nothing to help sort out the mess that has been made of my family in the wake of Lyme disease: trying to figure out if I inadvertently passed Lyme disease and co-infections on to my beloved children.

Both of my children have several symptoms of Lyme disease--rage behavior, failure to thrive, sleep apnea, just to name a few--enough to warrant having both of them tested. The kids have both tested positive for antibodies to Lyme disease--meaning they were both exposed to it. That's as good as the tests get--they detect antibodies, not the actual disease itself.

Neither of my kids have ever had a (known) tick bite, which means that given my history of misdiagnosed-for-years Lyme disease, it is highly likely that they were exposed in utero. However, because of the problems with Lyme tests, my husband and I (and countless other families in our shoes) do not have the peace of mind we so desperately deserve, especially when it comes to our children.

There are high risks involved in treating Lyme disease. However, there are higher risks from untreated Lyme disease.  I want peace of mind, but I can't have it. I am in charge of the health of myself and the health of my children. Sometimes, that means making decisions that I'd rather not make. That also means facing a lot of flak from well-meaning friends and family who don't have all of the facts.

Please remember that whatever decision we make as a family--whether to treat our children or not--it is ours. You'd be amazed at the hurtful things people say about Lyme disease, especially when children are involved. What we need most is support, not judgment.With Lyme disease, nothing, nothing is certain. However, what is certain is that my husband and I love our two children more than anything in this world and we want only the best for them.

9 comments:

  1. It must be so difficult to be in your situation. Your children are so sweet and innocent. When will the powers that be get the devastation of this disease and want to do something about it to save our precious children from its affects.
    You are in my thoughts and prayers as you make the decision that is best for your two sweeties. God be with you all.

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  2. Alyson, this is a powerful post. My girlfriend is living through this nightmare right now. Both kids tested positive and have been through rounds of treatments only to get worse as soon as the abx ends. Our "regular" Pediatrician found out that she was treating her children with long-term abx and ripped into her, telling her that she is destroying their immune systems, and she was going to kill her own children. Talk about mind-blowing! I told her she should report the Doctor, but of course she is afraid of the ramifications. We are in such a dreadful state of affairs with the many controversies around Lyme.

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  3. I am right there with you girl, so hard to know what the heck to do. Keep on fighting the fight and do what YOU think is best for your kids!!

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  4. When I found out I was pregnant, I tried to eat as healthily as I could, avoiding fish, etc. I substituted chicken salad in place of tuna salad, for example. We would eat canned chicken because I couldn't bear to cook. Now, it shrivels me to think of all those nasty chemicals (BPA, especially) I exposed Gwen to in utero. But you can't beat yourself up about it forever. You do what you know to be the best at the time, and that's all you can do.

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  5. I am devastated. I just found out on Thursday that I have Lyme and I have a 4 yr old and a 10mos old. I don't know what to do. I am going to get them tested, of course, but I read here make them worse on antibiotics? I am terrified. :( If you have any advice, please let me know: melissa.antal@gmail.com. I have a lot to learn, but so far everything I read is very discouraging.

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  6. Oh My Goodness...is all I can say. I am only just pursuing Lyme's disease in our family and unfortunately we are not just dealing with spouses, schools or family members who want to bury their heads in the sand over this matter, but our government :-( that is right the Australian Government says there is no Lyme's disease in Australia even though research in 1959 and 1962 said there is, even though people and children who have never even held a passport let alone left the country have tested positive for it or even died from it. I was bitten by a tick that remained engorged on me for a week at the age of eleven and since that age have suffered from a myriad of bizarre illnesses often that would produce negative pathologies. In 2000 I had a complete immune crash and was diagnosed with EBV, CMV, HHV6, Ross River Fever and a positive rheumatoid factor...needless to say about 3 years following this I also had post viral fatigue syndrome (while raising 4 children 18 months up to 6 years). During this time the specialist I was seeing kept on scatching his head as to how I was managing but also because he knew there was something else as the root cause. Twelve years on most days I still just survive (although most people from the outside looking in would think we are doing all right...it is easy to deal with masks than the isolation that ensues if you tell people where you are really at) I know have to home-school our youngest son because of a myriad of learning difficulties including auditory processing disorder, visual processing disorder, dyslexia and Irlens Syndrome. Our eldest son also failed his way through school with the same learning disabilities. Our youngest son at 6 had double mycoplasmal pneumonia he still wets the bed at 14 and is always having growing pains, joint pains, muscle pains, head aches, dry eyes, ulcered corneas. Our eldest two have had cardiac issues including arrhythmia, tachycardia, slow heart rates (45b/m), low blood pressure, poor extremity circulation, seizures (resulting in abnormal frontal lobe activity) and chest pain that will wake them up in excruciating pain in the middle of the night.....and on and on and on..... :-( . I am over it!! I am over having to cope with a government who honestly thinks that burying their heads in the sand is the best way to deal with this. I contacted a lymes disease organisation yesterday trying to find a LLMD in Australia to be told we don't have one :-( . On top of that apparently it will cost us in excess of $1000 per person just to be tested. An interesting concept when you have barely survived on 1 wage for nearly 20 years because you are too sick and your children have to many learning difficulties to put them through regular schooling even if I was in a position to get a job to to pay testing and treatment. **Sighs.......anyways. Sorry ladies for that big vent, but any prayers would gratefully be received because I honestly do not know which way to turn on this. Thanks, Robyn.

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  7. I know this blog was posted a long time ago, but during a google search, I came across it today. I appreciate your transparency for so many reasons... I have been dx with lyme about 3 years ago... took a while to get a doc to actually treat me for it without tagging me with every other dx in the book! I was doing reasonably ok with it for the last 1.5 years, until recently. I am 5 months pregant and am having some old symptoms emerge. Needless to say, I'm terrified for my baby! I had moved since my initial lyme treatment and my new team (OB) has no clue... he wants me to see an infectious disease doc but my last experience with one was nothing less than a nightmare. I'm praying that the baby is ok and that I can some how find a doctor who has a clue about pregnant women with chronic lyme! All that to say, thank you for this blog... I'm glad I'm not the only one who feels this way and will do whatever I have to do to advocate for the health and wellbeing of my baby! Praying this little peanut (and any after) are lyme free but am prepared to treat it, however necessary, to keep them from the pain and suffering I have had to endure. My best to you and your family!

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  8. That must’ve been a very difficult situation to you, Alyson. And it’s hard for the parents to feel complacent, knowing that their precious children’s lives are at stake. I hope you were able to have any clarity with regard to their condition, and that you could also give them further assistance that they need. Take care, and good luck!

    Sabrina Craig @ Medical Attorney

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