Finally... 4 bands positive on Labcorp Lyme test

[matis_mom]

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

That's the million dollar question! We are seeing an ID doctor today, and I faxed the results to Dr. L. When we got back yesterday we had a message that the consult at Georgetown is scheduled for Monday! I am going to call Dr. L today and tell her I want to wait at least until we get the Igenex results back. Maybe if ds was doing horrible, I would say let's just try and give him a break, but he is doing pretty well these days, so I feel we owe it to him to try the Lyme route before we do anything more invasive.

Please, please all pray that we will figure this out!

[ajcire]

You said the aso and antidbnase are high.. Can I ask what the numbers came back as on those?

 

Why would Dr. B not be concerned about the lyme? Does he think maybe it's not lyme or is he just more concerned about the strep at the moment?

[momofgirls]

Thanks for clarifying 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.

[matis_mom]

You said the aso and antidbnase are high.. Can I ask what the numbers came back as on those?

 

Why would Dr. B not be concerned about the lyme? Does he think maybe it's not lyme or is he just more concerned about the strep at the moment?

ASO: 377

Anti-DNASE b: 680

 

They are almost back up as high as they were initially in July 09!

 

About the Lyme, it's not that he wasn't concerned, but he said the bands he shows are not all Lyme specific, so we wants us to do Igenex to confirm.

But he was more concerned that the strep titers were that high after over a year on abx, with most of that time being on Augmentin XR.

[KeithandElizabeth]

From what I have learned, I believe the lyme could be what is prohibiting the body from dealing with the strep and this may be why your son still has high strep titers while still on antibiotics. My son had elevated strep post 4 IVIG's and while being on the prophylactic dose of Augmentin. HIs strep titers went down only after we began treating the lyme with multiple antibiotics.

 

Elizabeth

[ajcire]

From what I have learned, I believe the lyme could be what is prohibiting the body from dealing with the strep and this may be why your son still has high strep titers while still on antibiotics. My son had elevated strep post 4 IVIG's and while being on the prophylactic dose of Augmentin. HIs strep titers went down only after we began treating the lyme with multiple antibiotics.

 

Elizabeth

 

 

I guess in the end it doesn't matter so long as the titers went down but is there really a way to know if it was from treating the lyme or more just that the combination or heavy dose of antibiotics used for the lyme took care of the titers themselves?

[KeithandElizabeth]

I do think that the combination of two antibiotics can take care of the strep, even if you have another infection. Our personal experience though has been that we had to get rid of all of the infections in order to get to 100% (and we are not 100% yet). Our daughter no longer has lyme, but she still has babesia and this parasite is stealthy in and of itself and she will still sometimes have mild issues from just the babesia. So, I would say try to attack all of the infections and some, like babesia, need a different drug because antibiotics do not work with babesia.

 

Another infection that is causing so many issues for so many families is mycoplasma. I have a friend whose children have mycoplasma issues (negative for lyme) and whenever they get strep, they tic. She is now doing a longer course treatment for the mycoplasma in hopes that this will enable her children to fight strep appropriately.

 

Elizabeth

[P_Mom]

Elizabeth,

 

Good news that your daughter no longer has Lyme! How long do you think she had it before being treated? How long of treatment did she received before she cleared? One more........how do you know she no longer has Lyme? Okay...really one more....what are her remaining symptoms?

 

 

 

THANKS!!!!!!

[Fixit]

 

Another infection that is causing so many issues for so many families is mycoplasma. I have a friend whose children have mycoplasma issues (negative for lyme) and whenever they get strep, they tic. She is now doing a longer course treatment for the mycoplasma in hopes that this will enable her children to fight strep appropriately.

 

Elizabeth

 

so are you saying that the myco is there first....and then the strep comes along and sends it into overdrive....

 

as in ...myco p is always in the body unless you really clear it with long term abx(perhaps 3 months at min)..and then the strep is the secondary issue for pand/pits....

 

i would buyt into it...how did you or your friend come up with this....assuming i got it right

[KeithandElizabeth]

Pmom and Fixit:

 

I am constantly wondering what bacteria came first with my children (strep versus mycoplasma versus lyme, etc..... I suspect that the scenario may be different for each child. And for some children, perhaps, strep may be the only issue.

 

My daughter initially had a positive IGENEX lyme test in March, after being on just azithromycin for 2 months. Based on symptoms and ART muscle testing, the doctor no longer thinks she has the lyme, but that she is still fighting the babesia. We have not done a follow up IGENEX test to confirm. She was on one antibiotic for 2 months and then multiple antibiotics for the following 7 months and now is she on Mepron and azithromycin.

 

Currently, she seems to have very mild issues... mainly mood lability every 2 weeks. She also has had issues with anxiety in terms of needing to be close to us in the evenings. Interestingly, she had an eye blinking tic at the age of 18 months and then developed facial/vocal tics again at the age of 11 when she had strep in January. The tics were the first to go when we started multiple antibiotics in March. The mood lability seems to be the last of her symptoms to leave us.....

 

Our son, however, seems to still have lyme and babesia, but he is doing very well. He once had EVERY single symptom on Dr. K's website and could not leave the house or go to school.. We felt like we had just lost him. Now he is doing great and is having play dates and is back in school part time. In terms of current symptoms, he will have "PANDAS" moments that last only a few hours a couple of times a week. They can be brought on by a cold or an emotional trigger or just plain exhaustion.

 

On a side note, in terms of our son, he really jumped in his healing process when we added the Mepron to treat the babesia and then when we added the Tindamax to treat the cyst form of lyme.

 

In terms of our friend's family with the mycoplasma issue, our LLMD believes that they never really cleared the mycoplasma completely. Mycoplasma seems to be much easier to eradicate than lyme disease, but it is also a sneaky infection that is related to many illnesses. Following is an interesting mycoplasma article:

 

http://www.drgregemerson.com/fact-file/mycoplasma

 

Elizabeth

Edited September 25, 2010 by KeithandElizabeth

[P_Mom]

Thanks Elizabeth!

 

oh...what is Muscle Testing??

Edited September 26, 2010 by P.Mom

[KeithandElizabeth]

P.Mom:

 

Our doctor does ART muscle testing in conjunction with blood testing in order to give his patients additional tools in diagnosing and treating bacterial illnesses. Following is a description of the ART muscle testing.

 

http://www.neuraltherapy.com/art.htm

 

Elizabeth