Finally... 4 bands positive on Labcorp Lyme test

[matis_mom]

The pediatrician just called to say she had the results for the tests Dr. B. had requested. She mentioned DS has 4 bands (5 needed acoording to CDC) positive for Lyme... I guess this is good news, because at least now we know for sure we are dealing with Lyme. But it raises a lot of questions about how to treat/where to go from here.

Is plasmapheresis out of the question until Lyme is under control?

We are seeing Dr. B on Wednesday, and a local ID specialist on Thursday.

Oh, what a year this has been!

[KeithandElizabeth]

I am sorry about the lyme! I am happy that you found out before you did the PEX though.

 

We found out our daughter had lyme two days before her first scheduled IVIG and we canceled the IVIG and have been treating the lyme now for almost 7 months. On the other hand, our son had had 6 or 7 IVIG's and then we found out about his lyme. Based on our personal experience, I would have waited on the intensive (IVIG or PEX) treatments until I had really treated the infection for a long while. I don't think the IVIG's sped the recovery time of lyme in any way compared to our daughter.

 

I think the most important thing is to find a REALLY good lyme doctor. I believe you are in Virginia and I am thinking that maybe Dr. Beals is close to you? It is harder to find lyme doctors in the mid/southeast.

 

The herxing can be intense initially, but this forum should be a great resource for you in terms of treatment and detox.

 

Elizabeth

[matis_mom]

I am sorry about the lyme! I am happy that you found out before you did the PEX though.

 

We found out our daughter had lyme two days before her first scheduled IVIG and we canceled the IVIG and have been treating the lyme now for almost 7 months. On the other hand, our son had had 6 or 7 IVIG's and then we found out about his lyme. Based on our personal experience, I would have waited on the intensive (IVIG or PEX) treatments until I had really treated the infection for a long while. I don't think the IVIG's sped the recovery time of lyme in any way compared to our daughter.

 

I think the most important thing is to find a REALLY good lyme doctor. I believe you are in Virginia and I am thinking that maybe Dr. Beals is close to you? It is harder to find lyme doctors in the mid/southeast.

 

The herxing can be intense initially, but this forum should be a great resource for you in terms of treatment and detox.

 

Elizabeth

Talk about timing! But I am so thankful we found out before. I was really concerned if he had it and we did PEX, we would never get a positive result in the bloodwork. We already have an appointment lined up with Dr. Beals for next week I made this appointment weeks ago. God's timing is always so perfect!

[matis_mom]

OK, for the llm's (lyme literate moms) out there, the following bands were present through Labcorp and while of full strengt abxs: 66, 41, 28, 18.

High Mycoplasma IgG

High Anti-DNASE b

High ASO

Low IgA 2 (and IgA 1 very close to the lower limit)

 

Can't wait to see Dr. Bouboulis!

[NewBeginnings]

Are your WB results IgG or IgM?

 

I agree with Elizabeth....you need a good LLMD.

[matis_mom]

Are your WB results IgG or IgM?

 

I agree with Elizabeth....you need a good LLMD.

Those are IgG

 

For IgM they only test 41, 39, 23, all absent.

[cobbiemommy]

According to literature from our LLMD, band 18 is an outer surface protein (ospD). If you have it there is a 97% chance antibiotics will help you feel better. Band 28 is OSP E. Again, 97% chance of improvement on antibiotics. Band 41 is flagella or tail of Borrelia Burgdorferi. 90% chance of antibiotics helping you to feel better. Band 66 is the second most common antibody and is also a heat shock protein. Not given significance because different bacteria may produce it. If you have a good LLMD, they will know exactly how to approach these results. Remember, Lyme is a clinical diagnosis, and CDC statistics are not diagnostic criteria. Good luck.

[justinekno]

This is informative. Where did you find it?

 

According to literature from our LLMD, band 18 is an outer surface protein (ospD). If you have it there is a 97% chance antibiotics will help you feel better. Band 28 is OSP E. Again, 97% chance of improvement on antibiotics. Band 41 is flagella or tail of Borrelia Burgdorferi. 90% chance of antibiotics helping you to feel better. Band 66 is the second most common antibody and is also a heat shock protein. Not given significance because different bacteria may produce it.

[cobbiemommy]

This is informative. Where did you find it?

 

According to literature from our LLMD, band 18 is an outer surface protein (ospD). If you have it there is a 97% chance antibiotics will help you feel better. Band 28 is OSP E. Again, 97% chance of improvement on antibiotics. Band 41 is flagella or tail of Borrelia Burgdorferi. 90% chance of antibiotics helping you to feel better. Band 66 is the second most common antibody and is also a heat shock protein. Not given significance because different bacteria may produce it.

Info packet that was 1/2" thick from our LLMD. He compiled a bunch of info for his patients.

[lyme_mom]

OK, for the llm's (lyme literate moms) out there, the following bands were present through Labcorp and while of full strengt abxs: 66, 41, 28, 18.

High Mycoplasma IgG

High Anti-DNASE b

High ASO

Low IgA 2 (and IgA 1 very close to the lower limit)

 

Can't wait to see Dr. Bouboulis!

That's funny-llm's

[matis_mom]

OK, for the llm's (lyme literate moms) out there, the following bands were present through Labcorp and while of full strengt abxs: 66, 41, 28, 18.

High Mycoplasma IgG

High Anti-DNASE b

High ASO

Low IgA 2 (and IgA 1 very close to the lower limit)

 

Can't wait to see Dr. Bouboulis!

That's funny-llm's

Saw Dr. B today (drove 7 hours there, 7 hours back!). He wasn't too concerned about the Lyme results for now, but definitely wants us to do the Igenex, so we'll get that done on Monday. He is concerned to see his ASO and Anti-DNASE b are still high, and thinks we probably need to change antibiotics. He also gave us a script for a sinus scan since that's the only thing no one has checked out and maybe strep is hiding there.

He was very nice and thorough, and it was doable with dh behind the wheel

DS is so tired of this routine, though. He is so sick of getting blood drawn, spending hours in the car, hours waiting, hours hearing people say pretty scary things about him... But, he's a trooper

I guess now it's back to the waiting game! How long does it take to get results back from Igenex? Do they send you a copy or do you have to get it from the doc?

[lyme_mom]

OK, for the llm's (lyme literate moms) out there, the following bands were present through Labcorp and while of full strengt abxs: 66, 41, 28, 18.

High Mycoplasma IgG

High Anti-DNASE b

High ASO

Low IgA 2 (and IgA 1 very close to the lower limit)

 

Can't wait to see Dr. Bouboulis!

That's funny-llm's

Saw Dr. B today (drove 7 hours there, 7 hours back!). He wasn't too concerned about the Lyme results for now, but definitely wants us to do the Igenex, so we'll get that done on Monday. He is concerned to see his ASO and Anti-DNASE b are still high, and thinks we probably need to change antibiotics. He also gave us a script for a sinus scan since that's the only thing no one has checked out and maybe strep is hiding there.

He was very nice and thorough, and it was doable with dh behind the wheel

DS is so tired of this routine, though. He is so sick of getting blood drawn, spending hours in the car, hours waiting, hours hearing people say pretty scary things about him... But, he's a trooper

I guess now it's back to the waiting game! How long does it take to get results back from Igenex? Do they send you a copy or do you have to get it from the doc?

It takes two to three weeks and they send it to the doctor. Poor guy. Let me know how it goes with the other Dr B.

[momofgirls]

Cobbiemommy,

I did not know that patients positive for certain bands are "more" treatable with antibiotics. Now I am nervous...my daughter was positive for 31 and 41 and IND for 34, 39, and 83-93. Any insights on what those bands mean? Just so I understand, your doctor speculates how a patient will respond to antibiotics depending on which bands are present? Break it down for us a little further please.

Thanks, Kim

 

 

According to literature from our LLMD, band 18 is an outer surface protein (ospD). If you have it there is a 97% chance antibiotics will help you feel better. Band 28 is OSP E. Again, 97% chance of improvement on antibiotics. Band 41 is flagella or tail of Borrelia Burgdorferi. 90% chance of antibiotics helping you to feel better. Band 66 is the second most common antibody and is also a heat shock protein. Not given significance because different bacteria may produce it. If you have a good LLMD, they will know exactly how to approach these results. Remember, Lyme is a clinical diagnosis, and CDC statistics are not diagnostic criteria. Good luck.

[smartyjones]

Saw Dr. B today (drove 7 hours there, 7 hours back!).

 

 

isabel -- so what does all this mean for the PEX? are you going ahead as scheduled or changing plans?

 

i know --- it is rough for them with the dr's visits, medicines, etc. ds is doing much better after herx reaction in july that lasted 6-8 weeks with multiple dr's appts -- had an appt with integrative dr on monday, yearly check-up with ped on wed -- waiting for dr on wed he said, "the drs think i'm not okay but i'm really just fine."

 

i hopeful you're figuring it all out!

[cobbiemommy]

Cobbiemommy,

I did not know that patients positive for certain bands are "more" treatable with antibiotics. Now I am nervous...my daughter was positive for 31 and 41 and IND for 34, 39, and 83-93. Any insights on what those bands mean? Just so I understand, your doctor speculates how a patient will respond to antibiotics depending on which bands are present? Break it down for us a little further please.

Thanks, Kim

 

 

According to literature from our LLMD, band 18 is an outer surface protein (ospD). If you have it there is a 97% chance antibiotics will help you feel better. Band 28 is OSP E. Again, 97% chance of improvement on antibiotics. Band 41 is flagella or tail of Borrelia Burgdorferi. 90% chance of antibiotics helping you to feel better. Band 66 is the second most common antibody and is also a heat shock protein. Not given significance because different bacteria may produce it. If you have a good LLMD, they will know exactly how to approach these results. Remember, Lyme is a clinical diagnosis, and CDC statistics are not diagnostic criteria. Good luck.

I don't know that it is that certain bands are more treatable. I think it goes back to the idea that if that band is showing up then you definitely have lyme and that % is a percentage of his patients that improved based on those bands showing up in their bloodwork. Note, that all the numbers are 90 or above, meaning there is almost always a favorable response to antibiotics if you have lyme. I do know that band 31 is unique to Borreliosis (Lyme) and that antibiotics should bring a very favorable response. Our doc has 22 years of experience and trained under Dr. Ed Masters. He is very no nonsense and takes a long term view to treatment.