Do we have any congenital Lyme moms on here?

[EmersonAilidh]

It is amazing how involved my stepmom has gotten in all of this. A friend of hers messaged me on FaceBook asking for my help. She's had Lyme for at least three years & had a child during that time with brain damage, low muscle tone, & trachea problems. I helped her as much as I could but I was wondering if anyone on here is/knows a congenital Lyme mom that would be willing to give her some advice? I found a Mom with a blog but I've never talked to her so I thought I might as well ask on here as well.

 

Has anyone gotten in touch with Elise Brady-Moe, the congenital Lyme mom from Under Our Skin?

[NancyD]

I know there are a few congenital Lyme Moms on this forum and I am sure they will chime in. I may be one but I don't know for sure and I have no way of ever proving it. I thought I would be able to take tissue from my DD15's colonoscopy/endoscopy from when she was 5 (at least that would get me closer to the truth) but unfortunately the hospital packs the tissue in paraffin and IGX can't use it unless it is frozen in a specific solution. I surmise that my DD's autism may have been Lyme induced. Thankfully she has lost her autism diagnosis after years of treatment, but we have a ways to go before I can consider her completely "recovered". After seeing Under Our Skin I am so very grateful that she is so much better off than the kids portrayed in that documentary. I grew up on Long Island and took walks in the woods often. I cam remember pulling off ticks -- one in particular that was embedded deep into into my head. And now I live north of Boston, 5 minutes from NH, surrounded by woods, and lots of deer ticks. A few of the horses my DD rides have had Lyme and we know that you can transfer Lyme from horse to human. Who's to say you cannot transfer Lyme from human to human from saliva as well.

[Suzan]

It is amazing how involved my stepmom has gotten in all of this. A friend of hers messaged me on FaceBook asking for my help. She's had Lyme for at least three years & had a child during that time with brain damage, low muscle tone, & trachea problems. I helped her as much as I could but I was wondering if anyone on here is/knows a congenital Lyme mom that would be willing to give her some advice? I found a Mom with a blog but I've never talked to her so I thought I might as well ask on here as well.

 

Has anyone gotten in touch with Elise Brady-Moe, the congenital Lyme mom from Under Our Skin?

 

I am sure my girls got lyme from me at birth but there's no way to prove it I guess. But we are assuming I have had lyme since I was a child. I don't think I will have much help for your stepmom's friend though since we have not dealt with issues that she is dealing with. Except to read the info from Dr. Ann Corson's talks on pediatric lyme and have her child tested for lyme and/or seen my a LLMD for an evaulation. WIth lyme treatment, maybe her child can improve if he/she has lyme.

Susan

[sptcmom]

Unfortunately DS is a third generation Lyme plus/minus Bartonella child with Bartonella currently and Lyme not yet provoked. I have Lyme, Bartonella and Babesia not yet provoked. My mom very clearly (hind sight 20-20) had lyme plus Bartonella. A.R.T. has confirmed all three of us and blood tests in DS and I. Need to get DH tested soon. Have trained under and spoken to Dr Klinghardt as well which has further confirmed all of this. Also lost 4 of my 5 brothers to lyme and coinfection related conditions. My sister, brother #4, myself and mom are the only ones in our originally huge family that are still alive. I was an army brat so we lived everywhere, mom had pets, even had a small mice infestation once and hence the cat, rabbits and a dog as pets- all indoor ourdoor pets, and ofcourse not too much Lyme awareness.Mom is pushing 80 so don't want to pressure for bloodwork.

Dr Klinghardt thinks it might be further back in he family tree as he heard the history. My ancestors have also had a lot of military/war exposure- grandpa and great uncles were all soldiers.

 

Jodie

Edited March 6, 2011 by sptcmom

[FallingApart]

I'm having a hrad time understanding the definition of congential lyme. can someone briefly explain this? thanks so much!

[EmersonAilidh]

I'm having a hrad time understanding the definition of congential lyme. can someone briefly explain this? thanks so much!

 

There are two variations of it. If a Lyme Mom gets pregnant with untreated Lyme (plus or minus coinfections) the bacteria can be transmitted to the baby through the placenta. This does more than infect the baby, it also messes with any & all aspects of their development. That's why most Lyme babies who get it this way don't just have your typical Lyme symptoms. A whole lot of them, like Jared Shea from Under Our Skin & Jamie Forschner/Mandy Schmidt from Cure Unknown, are just totally disabled.

Other times, babies are just exposed to the bacteria when passing through the birth canal. It's worse than catching Lyme from a tick because it still interferes with important stages of life for the baby, but for the most part they aren't nearly as debilitated as the trans-placental kids.

As far as I know, there's no way to tell the difference once a baby is born besides guessing based on their symptoms. Not all Lyme babies test positive & not all respond to Lyme treatment since it's not just a bacterial infection at that point.

Hope that helped at all!

[pixiesmommy]

I think we are because if you say that PANDAS is linked to Lyme, then it really makes sense. Pixie's first unexplained fever was at just a few days old (9 I think) and then it was cyclical and worsening each time with neuro/behavioral symptoms progressing to the point of our hdIVIG last year. I have a history of strep myself since birth, with neuro symptoms and constant infections only beginning after a tick was on me for multiple days when I was 10. Mine may have been congenital as well, not sure how far back- my mother is dx w/Lupus (which I believe is really Lyme, but she has given up at this pt) and my maternal grandmother suffers a range of maladies ranging from delusions to severe psoriasis and arthritis- un-dx'ed for anything.

 

Tracing Pixie- now that I see the photos of rashes, her bio dad clearly has cat scratch fever. He was given a tentative dx of schizophrenia at one pt (he never followed up on this, of course) and had severe addictions.

 

Anyway, I could go on and on, but long story short, I'm happy to talk with anyone about anything- I'm pretty much an open book. An "angry at the establishment" open book, but nevertheless, an open book.

[EmersonAilidh]

Unfortunately DS is a third generation Lyme plus/minus Bartonella child with Bartonella currently and Lyme not yet provoked. I have Lyme, Bartonella and Babesia not yet provoked. My mom very clearly (hind sight 20-20) had lyme plus Bartonella. A.R.T. has confirmed all three of us and blood tests in DS and I. Need to get DH tested soon. Have trained under and spoken to Dr Klinghardt as well which has further confirmed all of this. Also lost 4 of my 5 brothers to lyme and coinfection related conditions. My sister, brother #4, myself and mom are the only ones in our originally huge family that are still alive. I was an army brat so we lived everywhere, mom had pets, even had a small mice infestation once and hence the cat, rabbits and a dog as pets- all indoor ourdoor pets, and ofcourse not too much Lyme awareness.Mom is pushing 80 so don't want to pressure for bloodwork.

Dr Klinghardt thinks it might be further back in he family tree as he heard the history. My ancestors have also had a lot of military/war exposure- grandpa and great uncles were all soldiers.

 

Jodie

 

I am so sorry to hear that but also so happy to hear that you're seeing someone as good as Dr. Klinghardt! Best of wishes to you. <3

[hurshiebar]

I am another congenital Lyme mom looking to connect with others to learn. This is all about six months new for us. Currently treating for mold toxicity in both my daughter and I. Please message me if there are other congenital lyme moms out there. Needing to find a LLMD that specializes in pediatric congenital lyme with mold toxicity.

 

Thank you,

Meg.

[rowingmom]

Our daughter's infections were suspected to be congenital, but we will never know. Her treatment was no different from treatment used for chronic infection. She was treated for 2 years with multiple combination abx with a pediatric LLMD in Buffalo (who also treats adults) and recovered to approx. 80%.

 

I have continued with Buhner's bartonella and babesia protocols in consultation with Stephen Buhner's associate Julie McIntyre. We are both recovering well with herbal treatment. I have never been treated with abx.

[mama2alex]

I strongly believe my son has congenital Lyme, as he's had "issues" since birth and I had a mysterious rash before I got pregnant and then became very ill after he was born. Don't know where you live, but we have a great integrative doctor in northern CA (SF peninsula) who has been treating Lyme in adults and children for 9 years. He is also very well versed in mold treatment. We've been at this for 4 years and ds (now 14) is doing much, much better. At this point, I strongly believe that in addition to killing the bugs, nutrition and detox (not only flushing toxins out, but reducing/eliminating them from the immediate environment) are key in healing Lyme.

[DebC]

I'm pretty sure that we are a congenital Lyme as well. My kids are at least second generation if not third or more. Both are PANDAS kids as well. I was diagnosed in June through IGeneX (CDC positive) and once I came back positive, I had the kids tested (daughter IGeneX positive and son had many + and IND bands). I had two known tick bites back in my early teens in the 1980's and may have contracted Lyme then. However, I suspect I am probably congenital Lyme as well. My father has Behcet's Syndrome, afib, sore knees, blood clots, multiple myeloma, and shaky hands when he writes. My sister has Sjogren's syndrome which leads me to believe it was passed on to her. Neither my father nor sister has been tested. The kids and I will be seeing an LLMD in October.

[hurshiebar]

Are there any doctors out there doing congenital lyme studies? If so please pass on their information. If my and my families suffering can be of any help with the larger discussion and research I welcome that.

 

Thanks,

Meg

[ktdommer]

I don't think a doctor or scientist would go near the controversial congenital Lyme subject. No money to be made in it anyway. Our old doc did his own sort of study within his patient group. This is part of the problem, data needs to be collected from all LLMD's, but how can you say positively a case is congenital.

So I believe that I gave Lyme to both of my boys. I knew I was sicker than most but was told it was allergies or depression for the reason for sleeping so much etc. I wasn't feeling too bad when I had my babies. My first son is the healthiest, nursed him for two years, then the second pregnancy I felt terrible and sort of never felt the same again. He nursed for 6 months before all of us got pneumonia.

Both boys progressed normally as children. I'm not sure why they were spared the developmental delays other than maybe I wasn't very symptomatic. It seemed to come out with my youngest at puberty.

Once my sickest was positive, the doc said I should be tested which I totally didn't understand as I was told I had Lupus. Then he said my healthy son should be tested. Turns out he wasn't as healthy as we thought.

My sister also passed on Lyme to her son and only knew because we all had been tested so she got tested since she seemed to maybe be getting MS and then her son. That was one terrible year!

Now I wish someone before the birth of my children had connected the dots of my symptoms!

K