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Passing the disease to my kids...

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Posted 12/14/2016 8:22 PM (GMT 0)
So I've just got results for my 18 year old son. (Backstory-- I have had Lyme for 29 years but went undiagnosed until October of this year. Never even heard of Lyme disease until a few years ago. I was IFA 80 (positive), IgG 39 IND, 41++ and IgM 31++, 39 IND, 41+. I am awaiting co infection panel results now and waiting to see an LLMD on Feb 8th). My son's came back IFA 40 (equivocal), IgM 39 IND, 41++ and IgG 39 IND and 41++.

My son has never had a known tick bite. He has suffered from GI issues since birth (I had intrauterine growth retardation with him, he was only 6 pounds at birth and he was a week late), he was tiny at birth, and so small at 2 years old that they did a number of tests on him but couldn't find a reason for it. When he was 14 he joined the Cross Country team for his Freshman year of high school. A couple weeks in and he was sick as a dog. Every day after practice he would spike a fever, have a headache, sore throat, etc. He ended up in bed for a couple weeks, lost 20 pounds. I took him off the team and we saw a slew of specialists over the next year (including an infectious disease specialist who never tested him for lyme!) and nothing was ever found as the cause. 2 years later he joined the cross country team again. Repeat of the first time. More weight loss, more illness, more tests, nothing found. Resolved when we took him off the team. He has lots of trouble maintaining weight.

It appears I have passed Lyme to him while pregnant. The nurse at the pediatricians office couldn't believe it. Said she'd never heard of such a thing. Do you think this is Lyme? Or could it be something else?? I am now dreading the results of my 11 year old's test. It should be back tomorrow.

Thanks for reading.
Posted 12/14/2016 8:32 PM (GMT 0)
Quite possibly. Has he had any pain issues Could you get the Igenex test for him?

I ask this because mainstream tests are not always reliable, and when they do show infections from Lyme, many drs. will claim that they are negative, or false positives.

At the very least, feel free to post the test when you get it, so that those here that know what to recognize as positive Lyme can give you a more experienced answer.

Post Edited (julymorning) : 12/14/2016 1:35:48 PM (GMT-7)

Posted 12/14/2016 8:41 PM (GMT 0)
hmm band 41 is not very lyme specific. it is specific to spirochetes, but not specifically lyme, so with those results it's not 100% sure.

HOWEVER, since you seem to have had a positive lyme test, then yes, it is possible to have passed it in the womb

/www.scientificamerican.com/article/mothers-may-pass-lyme-disease-to-children-in-the-womb/

usually a short course of antibiotics will make the bacteria much more visible to the immune system than before abx. repeating the test a few months after the abx can show a more clear positive than what you have now.

my lyme specific symptoms really showed their ugly head after an aggressive course of antibiotics for ... h-pylori. So not related to lyme, but the antibiotics were active against lyme too and in the right amount, so they provoked a reaction and started more specific symptoms. Before that i had allergies, asthma and very bad stomach issues and pain in the upper right of the stomach (duodenum), i've lost over 20 pounds. I've done dozens of tests and nobody would be able to say what was causing my pains. Some said h-pylori (had negative test), some IBS. No other lyme symptoms. After the abx, the symptoms started.
Posted 12/14/2016 8:46 PM (GMT 0)

julymorning said...
Quite possibly. Has he had any pain issues Could you get the Igenex test for him?

I ask this because mainstream tests are not always reliable, and when they do show infections from Lyme, many drs. will claim that they are negative, or false positives.

At the very least, feel free to post the test when you get it, so that those here that know what to recognize as positive Lyme can give you a more experienced answer.

This was an IgeneX test :-( Once I have the papers in hand, I can scan them but the results I posted are as they read them to me. He has had pain issues-- leg pain as a child and stomach/abdominal pain as a teenager.
Posted 12/14/2016 8:48 PM (GMT 0)
Oh! I misunderstood, I was reading those results thinking they were your earlier results...for yourself.
Posted 12/14/2016 9:21 PM (GMT 0)

julymorning said...
Oh! I misunderstood, I was reading those results thinking they were your earlier results...for yourself.

It's ok, our tests were almost identical.
Posted 12/14/2016 9:23 PM (GMT 0)
It has been proven that Lyme can be transmitted to a child during pregnancy. Don't feel guilty. You did not know you had it. What's important is that you are working on getting treatment now.

I have two kids. My son has the symptoms but my daughter doesnt.

When she was a baby (starting at 10 months) she had recurrent ear infections and was on antibiotics for two years. They never did tubes. She took the abx everyday for that time because we would bring her in for an ear infection, go back in two weeks for a recheck. Her ears would be clear but less than two weeks later she'd have another ear infection. Eventually, she started having recurrent strep. The doctor added rifampin. She never had symptoms of Lyme so I think the abx and rifampin defeated it.

My son however has had symptoms from day he was born. With him the doctor elected to have tubes and they worked for the ear infections, but he also developed recurrent strep.

I had my Ingenex test almost two year ago. My test came back definitively positive. My son's was IND. I finally got into Dr J's practice. Currently my son is on a trial of arythromycin and amoxicillin with clonidine for sleep (an issue his pediatrician never addressed other than to say take melatonin).

His fatigue has increased dramatically. Bad news is that it probably confirms a Lyme diagnosis. Good news is that we are with the right doctor and the practice has a Nurse practioner who treats pediatric patients exclusively.

It is really hard to see your child go through this. We always want the best for our kids and its easy to feel guilty because you passed on Lyme but you had absolutely no way of knowing. We have all been to doctor after doctor that either misdiagnosed our condition or just plain said there's nothing wrong with you.

I once took my son to a doctor that told me his symptoms were all in MY head. Needless to say I told my pediatrician (she referred us to the doc) that he was terrible and his bedside manner sucked.

It's good that you are on the forum. This is the most knowledgeable group of moderators I've ever seen.

Good Luck, Kim
Posted 12/14/2016 9:30 PM (GMT 0)
Gosh all of those symptoms sound similar to what our teen DS has experienced. He also did cross country this fall and I feel it was extra hard on his body. His fatigue and fevers came back and he has lost weight again. He sure enjoyed it though.

It does sound like perhaps an Igenix test or the DNA connextions test may be useful at this point. It is very unusual for a teenager to have that cluster of symptoms.

You have some great resources here for all your questions.
Posted 12/14/2016 9:38 PM (GMT 0)
I would take him to a LLMD for an evaluation..you could schedule an appointment...because it can take several weeks, even months to get into one.

You can always cancel the appointment.

We just learned that Dr. Jemsek now has a Pediatric LLMD in his practice.
I know Dr. Jones is swamped....so good to know there is that option. (If you're near Washington, DC)
Posted 12/14/2016 10:01 PM (GMT 0)
We can vouch for the DC clinic. The LMNP there was sent by Dr. J to learn from Dr. J, the renowned pediatric LLMD. Both places are skilled with congenital Lyme.

You also might have your DS fill out the Lyme symptom checklists on the web such as Dr. Burrascano's and see if he actually has additional symptoms that he hasn't pieced together yet. That happened with our DS and he already had plenty of random symptoms before seeing the list but found even more.
Posted 12/15/2016 12:29 AM (GMT 0)
Unfortunately, as much as I don't want to tell you this, Yes. There is a very, very high chance it's Lyme. I've done quite the bit of research on the subject and it appears (to me at least, in my own opinion based upon this research) that congenital Lyme is very much real and exists. I have actually known a woman whose baby was diagnose not long after birth, and the mother had it for many years and wasn't treated right away. And if you go to the CDC's website, they actually talk about how a mother with Lyme disease that was not treated right away can pass the Lyme to the placenta and it can actually cause miscarriage as well. Good Luck with Everything and God Bless!

With Love,
Aly
Posted 12/16/2016 2:27 AM (GMT 0)

yancync said...
Gosh all of those symptoms sound similar to what our teen DS has experienced. He also did cross country this fall and I feel it was extra hard on his body. His fatigue and fevers came back and he has lost weight again. He sure enjoyed it though.

It does sound like perhaps an Igenix test or the DNA connextions test may be useful at this point. It is very unusual for a teenager to have that cluster of symptoms.

You have some great resources here for all your questions.

He did do the IgeneX test-- those were his results I posted immediately following mine: His were IFA 40, IgG & IgM 41++, 39 IND

I'd love to do the DNA Connexions test for all 3 of us but that would be $1500 :-(
Posted 12/16/2016 2:29 AM (GMT 0)

gkamom said...
It has been proven that Lyme can be transmitted to a child during pregnancy. Don't feel guilty. You did not know you had it. What's important is that you are working on getting treatment now.

It is really hard to see your child go through this. We always want the best for our kids and its easy to feel guilty because you passed on Lyme but you had absolutely no way of knowing. We have all been to doctor after doctor that either misdiagnosed our condition or just plain said there's nothing wrong with you.

The guilt is definitely weighing heavy on me.
Posted 12/16/2016 2:35 AM (GMT 0)

1000Daisies said...
Y
I believe I passed it on to all my kids via in utero and/or bfing.
There are no words for the guilt I feel for their intense suffering. I just had no idea at the time. No idea.

FWIW - I eventually confirmed all of our lyme with Advanced Labs because I just wasn't confident with the iffy Igenex tests (Advanced Labs actually looks for the spirochete and sends a picture back in the lab report).

My heart goes out to you and your kids. My only advice at this time is to test and treat the kids (even if they don't show symptoms). I didn't treat Kid#3 because he appeared so fine, and I regret that as he did eventually show symptoms.

Thank you. What type of testing does Advanced labs do? Urine? Blood? Do you need doctor's order? How much is it? I am considering DNA Connexions and it will be $1500 to test all 3 of us.
Posted 12/16/2016 2:39 AM (GMT 0)

Girlie said...
I would take him to a LLMD for an evaluation..you could schedule an appointment...because it can take several weeks, even months to get into one.

You can always cancel the appointment.

We just learned that Dr. Jemsek now has a Pediatric LLMD in his practice.
I know Dr. Jones is swamped....so good to know there is that option. (If you're near Washington, DC)

I am awaiting my first appt with an LLMD on 2/8/17. I can't just make an appt for my son(s). This dr requires a $750 membership fee to be paid upfront *prior* to any appointment being scheduled :-( I am planning on just asking him about my sons' results when I go to see him to get his opinion before I schedule them.
I'm in Ohio, so DC would be a bit of a drive tongue
Posted 12/16/2016 2:41 AM (GMT 0)

MyLymeBind said...
Unfortunately, as much as I don't want to tell you this, Yes. There is a very, very high chance it's Lyme. I've done quite the bit of research on the subject and it appears (to me at least, in my own opinion based upon this research) that congenital Lyme is very much real and exists. I have actually known a woman whose baby was diagnose not long after birth, and the mother had it for many years and wasn't treated right away. And if you go to the CDC's website, they actually talk about how a mother with Lyme disease that was not treated right away can pass the Lyme to the placenta and it can actually cause miscarriage as well. Good Luck with Everything and God Bless!

With Love,
Aly

Thank you! I was reallllly hoping I had spared them. I did have a couple miscarriages, too. Such an awful disease made worse by the medical establishment making us seem like crazies.
Posted 12/16/2016 2:49 AM (GMT 0)
So I got my 11 year old's results back today...

IFA - less than 40 (negative) YAY!
IgG 41++
IgM 39 IND, 41++, 66+

I've never even heard of 66. I don't have that one, nor does my older son. No clue what this means.
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