My son and I both got tested using Western Blot. I showed as negative (no positive bands), but my infant son had 6 positive bands. He has been on antibiotics for 2 months after being diagnosed by a LLD pediatrician. However, if he has it, I would think he got it from me in vitro since he is only 16 months old. He started showing some autism like symptoms at a young age, but not totally. We found out about autism-induced lyme, thus gave him the test. Plus, I had a bullseye type rash during pregnancy, so I thought it could be. That being said, I was negative and he had the six markers.
Could I still have it and not have shown up on the WB test? Could he have positive markers and not have Lyme. I'm now pregnant again and don't want to go through this again with another baby (obviously), so I'm just looking for answers.
Posted by 5vforest (Member # 29365) on :
Out of curiosity, which lab did your western blot?
Every Lyme doc will tell you that Lyme disease is a clinical diagnosis. It's pretty rare for someone to have no bands positive on a western blot (especially one from iGenex), but you can't discount LD because of a negative test.
If you had an EM rash, I would be very very cautious. Will your doctor put you on amoxicillin during your pregnancy? I don't think not taking antibiotics is worth the risk.
Posted by momlyme (Member # 27775) on :
Welcome to Lymenet! Sorry you have to be here.
False negatives are very common. Especially if you have had it for a long time. Lyme disease can disable the immune system. The body stops fighting the bacteria and stops producing anitbodies. The tests look for antibodies.
The sickest people are very often unable to produce a positive result on Western Blots.
Symptoms are a good indicator of how likely you are to be positive. Lyme (and co-infections can be diagnosed clinically by looking at your symptoms --by a qualified LLMD.
Have you posted in "Seeking a Doctor?"
In the meantime, you can also post your findings on lymenet and get our opinions.
Page 21 of that document has a section called: LYME DISEASE AND PREGNANCY
I believe you should be on antibiotics while you are pregnant to prevent it being passed to the baby.
No breastfeeding either if you have it... which I imagine you do. Sorry.
Get the best doctor you can afford and get well soon!
Posted by Lymetoo (Member # 743) on :
Was also wondering about the lab that was used.
Posted by emartinez (Member # 29979) on :
My blood work was sent to both an IGENEX Lab and Quest Diagnostics Lab. I did not have any positives. I did have IND on numbers 41 and 39. I have not had any symptoms. while I was pregnant I had a rash that looked like a bulls eye but the lymes specialist told me I would not have gotten a rash while pregnant if I had Lymes because usually women are not symptomatic during pregnancy. After I had my son 16 months ago, I had swollen ankles and my toe swelled up (It looked like GOut) but it went away within a week and I havent had any symptoms since.
My son on the other hand has had developmental delays (does not talk yet or point). He also has some sensory seeking behaviors. He smiles often, gives great eye contact, is very engaging, and loves to be around my husband and I. He has been on Amoxicilan, azithromocin, and a probiotic for the the past 2 months and has made progress. He isnt talking yet but his sensory seeking behaviors have decreased dramatically and his point and other nonverbal gestures are emerging. He is not sick any more than a typical 16 month old baby. However I notice that his glands are always swollen. We took him to Dr. Charles Ray Jones in New Haven, CT in January and Dr. Jones clinically diagnosed him, a month later, we got his blood work back and he tested positive for 6 markers.
I asked the lymes specialist that I saw if I could go on antibiotics even though I tested negative and he said no because he does not think I have Lymes. I am so confused. What should I do?
Posted by MichaelTampa (Member # 24868) on :
The situation looks a lot to me that you have at least a few of those lyme buggies in you. Maybe your body is keeping it at bay and you have no symptoms. I'm sure it happens sometimes.
Do you really have no symptoms? None at all? How is your energy? You might get a lyme disease checklist (many on the web, Dr. Burrascano has a pretty good one on the ILADS website in his "treatment guidelines" PDF), and have someone you know fill out the form for you. Many people learn to live with symptoms so well they eventually do not realize they have them. It is part of adapting to life. Anyway, might be good to have a friend go down the list to see if you really have no symptoms.
Regarding another baby, I hear antibiotics during pregnancy can make all the difference regarding if the baby gets it. Maybe that's the case even if your body is keeping it at bay for you without any symptoms.
Posted by momlyme (Member # 27775) on :
I felt fine when I was pregnant and when I was breastfeeding. When I stopped... all my symptoms came back. I don't know why that is... maybe someone else will be able to chime in.
Did you or are you breastfeeding?
You say you are pregnant now? IMO, you won't have symptoms.
Does anyone know why pregnant women usually do not experience symptoms? Could this be the reason emartinez's WB test is IND on only 2 bands?
Posted by Lymetoo (Member # 743) on :
Just wondering .. was this "Lyme specialist" an infectious disease dr or an LLMD?
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
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"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
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