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How many of the moms have lyme?


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So, if by treating the lyme, do you hope to cure your thyroid problems? Or will you have to continue to treat? Im sorry, I don't know much about Thyroid disease.

 

I hope to cure everything with lyme treatment! But I know that's probably not realistic so I'll just have to wait and see, even though I hate that! :)

 

Susan

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Love what Susan said... "hope to cure everything with lyme treatment!".

 

I'm not sure I know what "our story" is. I thought my oldest daughter was a stand-alone case of lyme. But now, my youngest daughter, with very differnt symptoms, has also tested positive and will begin treatment soon. Which led me to test myself via Igenex -- and I came up with results that while not officially positive, do indicate that I likely have lyme (other stuff) as well. I am waiting on another appointment to discuss treatment.

 

I was diagnosed with hashimoto's disease (autoimmune thyroid) about 14 years ago (before my daughters were born). My mom has Hash too, and my brother has Graves disease (also autoimmune thyroid). Makes me wonder about multi-generation infection here. But it will be impossible to unravel all the mysteries of what comes in to play.

 

So much still to learn about infection, disease, autoimmune component.

 

I'm curious to see what will happen to my Hash when I begin treatment.

 

Mary

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I refrained from posting on this a few weeks back b/c I was just going thru my downfall w/ Lyme. I have 2 PANDAS kids who never got much better over time or did improve somewhat for about 3 weeks and then by the 4th week symptoms appeared again. My previous issues of sudden gall bladder attack and removal, IBS, pituitary tumor diagnosis to explain my elevated prolactin level (but no tumor ever seen on MRI and was on Rx for 15 years to regulate menses--I'd be willing to bet the Lyme could have been the culprit), bi-lateral carpal tunnel and trigger finger release surgery and some other symptoms that I thought were just unlucky but maybe now all stemmed from Lyme. I know I'll never know for sure. But after my flu vaccine on Nov. 2nd of this year, I went down hill. Within a day or two I felt achey and tired but it seemed like that was from the vaccine...not a big deal. A week later, I had MAJOR bone and joint pain and cracking. I felt like I got run over by a truck--heaviness from shoulders to hands, carpal tunnel pain, electrical pulses from elbows to hands, ear pain upon waking, pain in bottom of my feet and brain fog which was bad b/c I'm trying to nurse 2 back to health. I was in denial b/c it was just extremely inconvenient! LLMD put me on Doxy and the herxing began. One disturbing symptom that appeared were nodules under my skin on my fingers. Dr. believes that's part of herxing. My western blot & C6 peptide were negative. My CD 57 came back at 38. The only other abnormal results are my Vit D=27, hemoblobin and hemocrit are a little elevated. Since being on Lyme tx, I've improved slowly. I felt non-functioning a few weeks ago and now I am back to doing most things but even just after volunteering in my DS's kindergarten class this AM, I needed to relax on the couch this afternoon. I used to be full of energy! I want that back! Thought I'd share on this post so we have a collective group of Lyme moms w/ Lyme kids. I credit all these moms who post before me to helping my family. So thanks and happy holidays!

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We ran another IGENEX test for me. Not sure what it's called (I have the paper upstairs) but it's supposed to be more definitive. I'll post the name when I find the paper.

 

I was just diagnosed at our last appt with HYPO thyroidism, which I have suspected for YEARS, but was just finally dx. I'm on 30 mg of Armour (compounded.) I'm on something like Day 11 now and feel a *little* more functional and clear-headed.

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I refrained from posting on this a few weeks back b/c I was just going thru my downfall w/ Lyme. I have 2 PANDAS kids who never got much better over time or did improve somewhat for about 3 weeks and then by the 4th week symptoms appeared again. My previous issues of sudden gall bladder attack and removal, IBS, pituitary tumor diagnosis to explain my elevated prolactin level (but no tumor ever seen on MRI and was on Rx for 15 years to regulate menses--I'd be willing to bet the Lyme could have been the culprit), bi-lateral carpal tunnel and trigger finger release surgery and some other symptoms that I thought were just unlucky but maybe now all stemmed from Lyme. I know I'll never know for sure. But after my flu vaccine on Nov. 2nd of this year, I went down hill. Within a day or two I felt achey and tired but it seemed like that was from the vaccine...not a big deal. A week later, I had MAJOR bone and joint pain and cracking. I felt like I got run over by a truck--heaviness from shoulders to hands, carpal tunnel pain, electrical pulses from elbows to hands, ear pain upon waking, pain in bottom of my feet and brain fog which was bad b/c I'm trying to nurse 2 back to health. I was in denial b/c it was just extremely inconvenient! LLMD put me on Doxy and the herxing began. One disturbing symptom that appeared were nodules under my skin on my fingers. Dr. believes that's part of herxing. My western blot & C6 peptide were negative. My CD 57 came back at 38. The only other abnormal results are my Vit D=27, hemoblobin and hemocrit are a little elevated. Since being on Lyme tx, I've improved slowly. I felt non-functioning a few weeks ago and now I am back to doing most things but even just after volunteering in my DS's kindergarten class this AM, I needed to relax on the couch this afternoon. I used to be full of energy! I want that back! Thought I'd share on this post so we have a collective group of Lyme moms w/ Lyme kids. I credit all these moms who post before me to helping my family. So thanks and happy holidays!

 

Oh my gosh, kmom! Hang in there!! I can totally relate. I am waiting for my Igenex results (we also used the My Lyme ID which is also not back yet) but our LLMD is certain I have Lyme and co-infections... I feel so sick all the time but just keep pushing through it. I really related to your post - thank you!

P.S. My ds14 has PANDAS too and while treatment improved him 65% his progress "stalled" at that point. That was when I got suspicious "something else was going on." That was when we found out about the Lyme.

Edited by RNmom
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Do any of you with Lyme have kids that DON'T also have Lyme?

 

I'm probably going to get myself tested, but I have a daughter, 2 years older than my pandas son, who has no Lyme (or any) symptoms. Is it possible to pass it congenitally to one child but not the other?

Yes that can happen. In fact you can have three kids with positive lyme tests and only one or two of them are "sick" with lyme. Dr. Jones in CN told me that this happens a lot. He says he will get a whole family and the mother wants to treat them all b/c of their positive lyme tests but he will not treat a child without symptoms or physical signs of lyme that he sees in the exam. This is because a lack of symptoms means the child is not sick with lyme. My kids did not have congenital lyme according to Dr Jones (b/c they were not sick as young children) but they each tested positive for lyme. My middle one actually had a lot of pluses for a couple bands but he was never very sick with lyme. I can't remember the bands but one of them had three pluses I think. His body was fighting the lyme and handling it well. He also did not have any coinfections (as far as we know :-)), unlike the rest of us and that makes a huge difference too.

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  • 5 years later...

I have tested positive for Lyme. A doc thought I had Bartonella a few months before I became pregnant with dd (the one with PANS). I had gotten a cat scratch and my lymph node in that arm was enlarged. Due to dd's anxiety and Pandas/PANS issues, I had wondered if it could have been transmitted to her at birth, and about a year ago (but she's now 23) she broke out in the straie Bartonella rash - looked like dark reddish purple streaks on her, and they would last a few days and appear in another part of her body. Regular docs had no clue (and didn't seem to care), but after I suggested it might be Bart they looked it up and agreed. Her holistic nurse practitioner thought it was Bartonella, and she has had some Lyme and coinfection training.

 

Sooo, I (mom) did test positive for Lyme, but had Bartonella also before dd was born. I really don't know if I had Lyme then or not - we hike a lot and have deer in our yard, so the Lyme itself could have been a later thing.

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