posted
Does anybody out there know that much about congenital Lyme? I'm asking this because I contracted Lyme when I was pregnant with daughter #1 but didn't get a diagnosis until after daughter #3 was born. My daughters have never had any symptoms that would suspect that they have this but they have tested positive. Daughter #2 has recently had some joint pain and some previous problems with learning. But she is 14 and daughter #1 is 18 and always been very healthy, athletic and an honor student. My question is, should they get treatment even if they aren't sick? I know this can lay dormant in the body for years before symptoms arise. That's what happened to me. I got infected in 1987, got the bullseye rash, and got very sick with neverending fatigue (I thought that was from pregnancy). My doc refused to do a lyme test so I just thought it might be something else. I didn't get any huge symptoms until 1995 when I was pregnant with #3, when I woke up one morning numb from the waist down. After baby was born I found an LLMD who tested me and was highly positive. My worst symptoms started a few weeks after taking abx but got so much better. I have not been on any kind of treatment for three years now because of no med insurance and a very messy divorce and I have never been sicker, wheelchair bound, you name it. I don't want my daughters to get like this, but do you think there is a chance they won't because they've gone this long without being sick? I'm really confused!
Julie
Posts: 28 | From California | Registered: Jul 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, Julie, and welcome!
I'm breaking this up a little. We're neuro-challenged and paragraphing helps us a BUNCH!
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quote:Originally posted by Julie SO Cal Lyme: Does anybody out there know that much about congenital Lyme? I'm asking this because I contracted Lyme when I was pregnant with daughter #1 but didn't get a diagnosis until after daughter #3 was born.
My daughters have never had any symptoms that would suspect that they have this but they have tested positive. Daughter #2 has recently had some joint pain and some previous problems with learning. But she is 14 and daughter #1 is 18 and always been very healthy, athletic and an honor student.
My question is, should they get treatment even if they aren't sick? I know this can lay dormant in the body for years before symptoms arise. That's what happened to me. I got infected in 1987, got the bullseye rash, and got very sick with neverending fatigue (I thought that was from pregnancy).
My doc refused to do a lyme test so I just thought it might be something else. I didn't get any huge symptoms until 1995 when I was pregnant with #3, when I woke up one morning numb from the waist down.
After baby was born I found an LLMD who tested me and was highly positive. My worst symptoms started a few weeks after taking abx but got so much better. I have not been on any kind of treatment for three years now because of no med insurance and a very messy divorce and I have never been sicker, wheelchair bound, you name it.
I don't want my daughters to get like this, but do you think there is a chance they won't because they've gone this long without being sick? I'm really confused!
Julie
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Well, then. If it were ME, I'd seek treatment for my affected children. Here's why.
Right now, they're probably fighting off the infection. But later on, when their immune systems are compromised in one way or another, things may change dramatically.
Your 18 year old may resist. In fact, BOTH may! But I'd have them talk to your LLMD about it. There are many here whose children have gone through very hard battles with lyme.
My own daughter, 14, is also an honor student, with CDC positive lyme (fortunately no coinfections). She's responded well to treatment (horrid knees only). After six months OFF treatment, she relapsed, with Bell's Palsy. It's like a ticking bomb -- it's unimaginable it'll go away by itself.
When I think back on her pre-DX history, I'm NOW able to recognize some of the more subtle signs -- leg pains I passed off as 'growing pains,' frequent stiff neck I attributed to sleeping wrong on her pillow, and the list goes on.
Anyway, you will gets lots more feedback. I wish you luck with your decision!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I am sort of going through this with my family now. I was the first one in my family to become extremely symptomatic and test positive.
It was only because I saw a Bartonella rash on my sister that I had her tested and she tested positive for Lyme as well. She is 18 and has had fatigue lately although a fairly healthy childhood. Me, I can trace back through my whole life Lyme symptoms although they did not become completely disabling until after a car accident.
On to my third sister who is 24. She just also tested positive for Lyme as well. I thought she was asymptomatic, but she says that she gets fatigued a lot and doesn't know.
All three of us girls are (CDC) positive for Lyme. We also all tested extremely positive on band 31 of the Western Blot, which is a band that particularly denotes congenital or very old cases of Lyme.
My one sister had *four* plusses (++++!!!) on band 31, and my other sister had three plusses. I had one, but I am sicker so not producing the old antibodies so well.
One thing I was told was that if someone tests positive and is asymptomatic, then often beginning treatment can *activate* the Lyme disease, so it's better to not treat.
So it then becomes a question of how symptomatic does a person have to be to be on treatment. That is something for you and your kids and your LLMD to really figure out.
I also have a brother and we are currently in the process of testing him. My one sister is symptomatic enough and has begun treatment, one sister is not as symptomatic so, though positive, we are not treating her.
My bro, if positive, I am still not sure if we will treat him though because of metabolic issues he appears to be symptomatic.
That's another thing - since Lyme has so many possible symptoms besides pain and fatigue, I felt like I had to be a real detective in deciphering what was symptomatice vs. asymptomatic.
It appears that we all got it from my mother, who currently is refusing to be tested and in complete denial. But I guess band 31 is quite a giveaway for the congenital, as is basic logic, since none of us have ever been bitten by a tick ever (that we know of).
Also, most of the bands we tested positive on were the same (I think 6 out of 8) so it would lend more evidence to the fact that we got the infection in the same place. It's not set in stone, but highly possible.
So that's been my expereince lately and I thought i'd share since lately we have really been asking the questions about treatment/being symptomatic.
I guess my family shows to me that many family members can be infected and it depends on the individual who is symptomatic and should be treated. Many people have strong enough immune systems to not develop the active Lyme. And with me, I was able to function until an outside event kicked my Lyme into high gear.
I wish the best for you and your family. This disease really stinks and it is hard even for me to realize that there is a good liklihood my entire family, including my husband, is infected.
Cheers,
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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I wish I knew how exactly band 31 related to congenital specifically, but I don't. My LLMD just told me that they knew that positives on that band indicated either congenital Lyme or Lyme that had been present for a very long time. If band 31 comes up positive, there is a good likelihood that it is congenital.
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hmmm. Interesting. I have 31*** on my western blot IgM and am 99% sure I am NOT congenital -- had a witnessed bite and EM rash four years ago.
Daughter Georgia, 14, who is also CDC positive because of being bitten many times, SHOULD be positive at band 31 if this was congenital since I would've passed it to her. However, her positive IgM bands are 18+, 23-25+, 39+, 41+, 58+, and 66++. (Though she did IND's at 30, 31, 34, 45, and 93.)
I find these bands very intriguing and wish we knew more about what each one really meant. But with all the many strains of borrelia out there, that might never be possible!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thanks for the advice everyone. Right now I'm just waiting for the doc's suggestion. She said that even though she has had several lyme patients she is not exactly sure how she wants to treat my asymptomatic daughters. She said she is going to do a lot of research on the subject of congenital lyme. She practices here in So. Cal now as a infectious disease doc but began her practice on the East where she had several lyme patients, so I'm not sure she'd be called an LLMD or not. Believe me, there aren't a lot of those around here to choose from. Mine could not take anymore patients. I guess I'll know what to do hopefully at our next appt. in 3 weeks.
Julie
Posts: 28 | From California | Registered: Jul 2005
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Sewer Rat
Unregistered
posted
quote:Originally posted by Julie SO Cal Lyme: My daughters have never had any symptoms that would suspect that they have this but they have tested positive. [..] My question is, should they get treatment even if they aren't sick?I don't want my daughters to get like this, but do you think there is a chance they won't because they've gone this long without being sick?
Hello Julie,
With what kind of test did your daughters test positive, and do you know the details of the results? (people, please always give details!)
Tough question, but I think your daughters should not get treatment if they are without Lyme symptoms. Eradicating all spirochetes is hard anyway, so long would you have to treat an asymptomatic person?
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I only have the test results copy with me for my second daughter. It was an Igenex IgM Western Blot, positive for bands 28, 31, 39, 41, 45, 58 and 66. That was taken in 2002. I just recently had her tested again and for co-infections.
Julie
Posts: 28 | From California | Registered: Jul 2005
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We are struggling with the idea of even testing our kids. My LLMD (who has changed my life and I really trust) said not to unless they are symptomatic.
He said that if I did have Lyme when I was pregnant they very well may show IGG positive as having been exposed but may not have a current infection.
Lyme is tricky this way. Typically the IGG and IGM show current and past infection but with Lyme it seems to repeat as you get sick so if you have symptoms a IGG doesn't really just mean past exposure like an Duck might say. With someone with no symptoms it might mean just exposure so...
He also said that ages 7 and 11 are ages to watch for symptoms to appear. My kids are 6 and 10 and you can believe I am watching them like a hawk.
My daughter has complained twice this week of a sore leg- growing pain, the fall off the skimboard, or Lyme- I am driving myself and my husband crazy.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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My LLMD also told me not to test until any symptoms would appear. My oldest didn't have any until she was 12 yrs. I think it must be a hormonal thing. She had only slight knee pain which hardly ever comes anymore. When she tested positive I decided to test my younger one. Sometimes I wish I wouldn't have. I'm absolutely going to put off testing my 11 yr. old unless she ever gets symptomatic. One tragedy at a time! Good luck with your kids.
Julie
Posts: 28 | From California | Registered: Jul 2005
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My LLMD also told me not to test until any symptoms would appear. My oldest didn't have any until she was 12 yrs. I think it must be a hormonal thing. She had only slight knee pain which hardly ever comes anymore. When she tested positive I decided to test my younger one. Sometimes I wish I wouldn't have. I'm absolutely going to put off testing my 11 yr. old unless she ever gets symptomatic. One tragedy at a time! Good luck with your kids.
Julie
Posts: 28 | From California | Registered: Jul 2005
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We are going through this with the kids- watching them for any sign.
I had what the Drs thought was JRA when I was a kid but then it just went away. My mom and the LLMD think I have had Lyme for years and my traumatic pregnancy and c-section brought it out 6 years ago. So... both my kids have probably been exposed.
Ugg!
Let's hope they all stay healthy!
Good luck!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Pregnancy totally brings it out! I got the tick bite and bullseye rash in 1987. I'll never forget the rash because nobody, including my doctor knew what the heck it was. After it went away I forgot about it until I saw something on the news about "Lyme disease" and what the rash might look like. I went to my doctor and asked him to test me but he said it was very unlikely to get it where I live.
Eight years later, three months pregnant with my third daughter, I wake up numb from the waist down and after a lot of misdiagnosis, I test positive for lyme!
If that very ignorant doctor would have listened to me all those years ago then I most likely wouldn't passed it on or be nearly as sick as I am right now!
Julie
Posts: 28 | From California | Registered: Jul 2005
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