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I know this sounds very insane, BUT


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I am wondering about something and if anyone else has ever had this happen? first of all I want to apologize as some of this is waaaay TMI! It was during either my second or third pregnancy when they usually have you come back in after they run the initial blood work for the pg, etc. Okay, again, I know this sounds really strange and I am not sure I should even post this on here as it is embarrasing, but I want to find answers to my kids and me getting sick all the darn time! anyhow, when I went in for the followup for the labs/urine, etc, I was told that the lab found something in (either urine or blood don't remember for sure which) that resembled (I think) syphilis or something like it. I was freaking of course!!! However, the tests were negative for syphillis and I have NEVER ever tested postiive for it any of the pregnancies or other times, BUT the lab guy thought I had something in there that closely resembled it. I believe they retested and it was negative again.

 

I am requesting my lab copies tomorrow from the OB/GYN. My WB came back positive for only 1 band of 23 kDa, so I am wondering if it is a stretch to think maybe it WAS actually a Lyme spirochete they were seeing since from what I have read they are similar? The only reason I even thought about this was because of what I have been reading on here and that I saw the 1 band on my test result. Now I know this is a controversial issues and I want to tread lightly, but thinking back to it, it seems strange to me. any thoughts?

Edited by jenbug
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I am new to the Lyme world, but the doctor we are working with did say that Lyme does closely resemble syphillis and it can be transmitted in the same way: sexually and in-utero. You would be one of the lucky ones if you have real evidence of having Lyme during pregnancy and possibly transmitting it to your children. It is only speculation in my family's case. I know my doctor suspects this in my family as my husband, myself and my two children have all recently tested positive. I tease my husband and tell him it's all his fault since I started developing strange rashes not long after we met and now we find out that we all have Lyme. Hmmmm.....

 

I don't believe there is such thing as TMI on this forum :)

 

When you get the notes from your doc please share. I am now very curious.....

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I hope Jenbug doesn't mind my sharing this info on her behalf.....I had an earlier conversation with her and the lab that ran the WB was Arup within the last two weeks.

 

Band 23 is a double starred band and is believed to be outer surface protein C (ospC).

 

IMO she needs to do further testing with IgeneX.

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I am wondering about something and if anyone else has ever had this happen? first of all I want to apologize as some of this is waaaay TMI! It was during either my second or third pregnancy when they usually have you come back in after they run the initial blood work for the pg, etc. Okay, again, I know this sounds really strange and I am not sure I should even post this on here as it is embarrasing, but I want to find answers to my kids and me getting sick all the darn time! anyhow, when I went in for the followup for the labs/urine, etc, I was told that the lab found something in (either urine or blood don't remember for sure which) that resembled (I think) syphilis or something like it. I was freaking of course!!! However, the tests were negative for syphillis and I have NEVER ever tested postiive for it any of the pregnancies or other times, BUT the lab guy thought I had something in there that closely resembled it. I believe they retested and it was negative again.

 

I am requesting my lab copies tomorrow from the OB/GYN. My WB came back positive for only 1 band of 23 kDa, so I am wondering if it is a stretch to think maybe it WAS actually a Lyme spirochete they were seeing since from what I have read they are similar? The only reason I even thought about this was because of what I have been reading on here and that I saw the 1 band on my test result. Now I know this is a controversial issues and I want to tread lightly, but thinking back to it, it seems strange to me. any thoughts?

Since we're sharing...

Two years ago, I donated blood to the Red Cross. I received a letter saying that when they first tested my blood, it suggested I might have an infection with HIV. When they ran additional tests, the results were negative, indicating there was no infection. They then said even though the additional tests were negative, I am no longer eligble to donate blood.

 

I was shocked...and obviously don't have an HIV infection. In December, I received a positive lyme test. I wonder if the lyme had something to do with it.

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I posted this recently under another topic and I know it's off topic from this conversation....however,

 

Our Lyme doc told us to immediately stop donating blood and to remove my organ donor designation from my driver's license. She said the blood banks are a big source of infection with Lyme.

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I posted this recently under another topic and I know it's off topic from this conversation....however,

 

Our Lyme doc told us to immediately stop donating blood and to remove my organ donor designation from my driver's license. She said the blood banks are a big source of infection with Lyme.

 

I already knew this but it really breaks my heart. I've always been really passionate about organ donation and am really sad that I no longer have that option.

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I don't think it sounds insane. I can't believe how many of us moms have turned out to have lyme disease. I would have never thought I had lyme. I just thought I was tired and getting old and stressed all of the time. I thought it was normal to wake up a little stiff and foggy headed. I thought everyone had little back things floating in their vision. Little stuff adds up. I am curious to hear what all you learn from your testing and you should never feel like its too much information for this forum. Hope it gives you some answers for your family.

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Well, what I don't get is if I do have it then why are they sick--meaning, why are their WB totally negative? In my gut it says they have something that is causing their symptoms that is definitely at LEAST PANDAS-like! I like this page on PANDAS. I find interesting the categories that are proposed there!

 

http://pandas.yuku.com/topic/55/PITANDS

Edited by jenbug
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I'm not the expert on this - but as I understand it, your kids could have negative WB and still have lyme because their immune systems wold have learned in-utero that lyme isn't an invader, thinking it was part of you. So they never learn to develop anti-bodies.

BUT...if they're negative on a local lab, this means nothing. My DS was completely negative on a local WB yet had 5 positve and indeterminate bands on Igenex.

 

You should go to the pinned "helpful threads" at the top of this forum and read a few articles on western blots - it touches on why things can be negative. If you decide to re-test with Igenex, you may want to ask your doctor to also order three additional blood tests when you do the blood draw (these 3 tests would be run by the local lab doing your draw - not by Igenex - and should be covered by insurance):

 

C3d - general immune complex measurement that, if high, could cause a false negative on Igenex (the antibodies measured by Igenex could be bound to immune complexes and not show up on the results)

C3a - an immune complex often elevated in early lyme (tends to normalize in chronic lyme patients)

C4a - an immune complex sometimes indicative of ongoing exposure to mold toxins

 

The info from these labs can help tilt the scale one way or the other if you get indeterminate Igenex results. You can also consider co-infections such as bartonella, but since you're just starting to look into lyme, and since there are labs that are cheaper than Igenex and take insurance for these co-infections, you may want to hold off on them until you get further along. If you end up consulting an LLMD, he/she might order co-infection tests from someplace other than Igenex - and if you thought treating Pandas was expensive - just wait till you get a glimpse of the lyme money-pit!

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I am positive for LD, have symptoms and being successfully treated. All 3 of our children are negative for LD when traditional antibody testing is performed. In our case because it is congenital Lyme they do not make proper antibodies. When other tests are preformed that don't look for antibodies they are positive for: Lyme, Babesia, Bartonella, XMRV, Coxsackies and KPU. One of the ways we found Lyme was looking for the DNA of the spirochete in the urine so its very possible to detect them that way.

 

I too have several odd lab results prior to discovering lyme: excess red and white blood cells in urine, ongoing anemia, some indication of auto-immunity via a blood test.

 

My girlfriend who has probably had lyme for years. Grew up in WI on dairy farm and drank milk from the can, had twenty furrow cats, etc. Has had an EM like rash resurface on her leg that she had as a young child. Is currently diagnosed with Lyme, Babesia, XMRV and KPU. Is really struggling with treatment 'allergic to mepron' gave blood regularly through her company every 3 to 6 months all the way up until this last year. She is just sick about this issue.

 

-Wendy

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thanks ladies for all of your info--it is appreciated :)

 

Well, the OB didn't have that in the recs, just elevated liver function tests during one pg, so now I feel like a heel! I do remember it though clear as day! I wonder if it ever got documented because all the sTD panels were neg, so they may have just dismissed it?? Anyhow, whatever.

 

Wendy--I am sorry you and your family are going through such a hard time. That is too bad that your girlfriend is upset. It isn't her fault though!

 

Well, I am getting my immunoglobulins retestd and now some Lyme-like tests. There are lots of other stuff in the results especially for the kids that I don't really understand too well, and I would have to write a freakin' book, so I will leave it at that! i will def update after these tests are done. I am just too tired to drive today even though it is only a 25 min drive or so. I have problems with falling asleep while drving, so I better just stay home. Maybe Mon or Tues I will get it done.

 

Jen

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