posted
Hi, I am brand new here. My name is Jen, I live in NH and I was just diagnosed with Lyme disease in December. I also had my daughter tested, because she had a bite on her foot last summer that looked NOTHING like a bullseye. It looked like a black fly, or spider bite. Similar to one I had at the same time. We both felt fine and therefore I didn't think anything of it. I never saw a tick on either of us. She is 17 months old and shows no obvious lyme symptoms, but had the western blot done and it came back as positive for just band 41 kd. My doctor, who is very knowledgeable about Lyme (had it himself), said we should wait to treat her and watch for symptoms rather than put her on 30 days of abx. He thinks it's possible that she doesn't have Lyme due to no obvious symptoms and just band 41. I just wanted some opinions/advice on this. I'm not sure what the best course of action is. I trust my doctor, but I'm scared also of not treating her, if it actually is Lyme and it could just keep getting worse. I also tested positive for only band 41, but I have almost every symptom on the list. I would appreciate any advice on how to proceed with my daughter. Thank you kindly in advance.
Posts: 16 | From New Hampshire | Registered: Mar 2008
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posted
I understand and share your worry. I do not *really* know how long I have had Lyme. I have been extremely ill for about 10 yrs now~ in treatment for the last yr or so.
Since Lyme can be passed fro mother to child, I am having both of my kids tested. My son, who is 13 now, is having horrible knee pain, which is one of the first main complaints I had.
Your child is still very young, and so Abx therapy might be harmful, not sure. I know for a fact that it does not go away without treatment, and will just continue to spread and take a stronghold. Maybe you could talk to him about Samento and Abx, and see which might be the best road to travel.
Of course you know that Lyme is a Dx of clinical symptoms as much as anything, so just having a pos. 41 on that particular day doesn't mean much if you are sick.
Just my thoughts, Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I passed it on to my son, who is now almost 3. I was told not to get him tested before the age of 18 months, because he would carry my antibodies. We just had him tested about six weeks ago. My son is asymptomatic, so we're waiting to find out what my LLMDs recommendations are. He mentioned something about wanting to treat him before he turns 5. Band 41 is not indicative of Lyme by itself.
Posts: 3528 | From US | Registered: Apr 2007
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bettyg
Unregistered
posted
WELCOME, would you like a copy of my newbie package of 107 pages info galore includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 of 105 pages since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain thigns: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR, no infrared SUNGLASSES, etc. and how to use this board!
if yes, please send me a PM, PRIVATE MESSAGE, it's 2 people standing together icon asking me to send it to you. i will send within 1 day of receipt of your pm; thanks *************************************
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Since 41 is the one band that is the first to be exprewssed and shes you child she may have inherited your antibody??
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Shortly after the birth of my second child I began getting sick. Fast forward 16 months and I was diagnosed with Lyme. Since I didn't recall a tick-bite, etc. I had to assume I was infected prior to the birth of my son, maybe even before the birth of my older child (who is now 5).
Anyway, I of course freaked and had both kids tested (ELISA and WB). Both came back with IgG band 41 positive and my daughter also had IgM band 41 positive.
I did tons of research and spoke with a LLMD about this...needless to say, neither child are showing symptoms and I am very comfortable with not treating them and trust me, I'm overly-conservative when it comes to this disease.
Band 41 is associated with MANY things, even non-infectious things that are not indicators of disease. MANY healthy people are positive for band 41.
Try not to worry...
Posts: 561 | From mass | Registered: Jul 2007
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posted
my husband got tested for lyme disease (because I have it) and his only positive band was 41. he has no symptoms.
my llmd is not concerned that he has lyme disease so he is not being treated. like someone else said here, this band is not lyme specific.
Posts: 871 | From NJ | Registered: Mar 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
41 is not a Lyme specific band, it cross reacts with many things. If there are not any symptoms, I would try not to worry at this point in time.
Just be aware of any abnormal symptoms in the future.
Course, this is just my 2 cents. You really have to rely on your intuition sometimes.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by feelfit: 41 is not a Lyme specific band, it cross reacts with many things. If there are not any symptoms, I would try not to worry at this point in time.
Just be aware of any abnormal symptoms in the future.
Course, this is just my 2 cents. You really have to rely on your intuition sometimes.
Feelfit
Theres more to it than you stated its much deeper in explaination thats needed.
I have links about it in newbie links.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Isn't Band 41 specific for the Bb bacteria flagella(in) - not sure of spelling - ? I wouldn't dismiss this so lightly!
Posts: 8981 | From Illinois | Registered: May 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Nope, it's not.....take a look at the Dr C's WB explanation that is stickied at the top.....band 41 can react with all kinds of bacteria that have a flagella (tail), including dental spirochetes.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thank you so much to all that responded, I appreciate it! I do feel better after reading these posts. We also had my 4 year old daughter & husband tested (Western Blot) last week and are awaiting the results. I think I may have got it 5 years ago, right before I got pregnant with my first daughter. I was staying in Maryland at the time just for a brief period with my husband and got extremely ill, worse than I had ever been in my entire life, and we couldn't find anything wrong....but I wasn't tested for lyme. I just feel that things haven't been the same since then. My doctor feels though, that mine is a more recent infection, he said this based on my results....not sure how he figures that. We'll see what my husband & older daughter's test results show and go from there. Thanks!
Posts: 16 | From New Hampshire | Registered: Mar 2008
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