nomoz Posted June 25, 2010 Report Posted June 25, 2010 Hello, all. The bloodwork is back on my 7 year old daughter, and the Western Blot now finds only lyme antibodies in band 41, which I hear is common in PANDAS cases. Otherwise, she now tests negative. Could biaxin actually have treated this since January??? Though relieved, I am still going to look into it further with an immunologist to make sure we didn't miss anything. I know this test can be inconclusive.. Her myco antibodies remain at a 5 (should be below .9).. Though she doesn't show active infection (IGM's in the 600's) I remain convinced that mycoplasma is a HUGE culprit here. How many others have had problems with mycoplasma and rage episodes?? And has biaxin been the drug of choice for all of you? I think this ugly illness is behind alot - if I'm not mistaken, it makes the immune system susceptible to other infections (even in a healthy immune system).. What is it doing to these kids??? Noelle
bgbarnes Posted June 25, 2010 Report Posted June 25, 2010 Hello, all. The bloodwork is back on my 7 year old daughter, and the Western Blot now finds only lyme antibodies in band 41, which I hear is common in PANDAS cases. Otherwise, she now tests negative. Could biaxin actually have treated this since January??? Though relieved, I am still going to look into it further with an immunologist to make sure we didn't miss anything. I know this test can be inconclusive.. Her myco antibodies remain at a 5 (should be below .9).. Though she doesn't show active infection (IGM's in the 600's) I remain convinced that mycoplasma is a HUGE culprit here. How many others have had problems with mycoplasma and rage episodes?? And has biaxin been the drug of choice for all of you? I think this ugly illness is behind alot - if I'm not mistaken, it makes the immune system susceptible to other infections (even in a healthy immune system).. What is it doing to these kids??? Noelle Noelle- I don't know if I will be much help but we had a positive IGG for Myco not an IGM and Rage is one of our big issues. Zithro treats Myco too. Ds's ASO and Anti Dnase are also still high. We just increased ztihro to 500 from 250 and on the 2nd day had a BIG rage- did not last as long- I am thinking it is from kill off- I hope at least b/c I want to believe it is working!!! HE also has a dry cough- not sure what that is about right now but I do fear it has something to do with myco die off....or just some sort of virus. Our P41 had a double positive- but we are negative for Lyme. My understanding is that can be from Myco- Good Luck- the Rage SUCKS! Brandy
nomoz Posted June 26, 2010 Author Report Posted June 26, 2010 Hello, all. The bloodwork is back on my 7 year old daughter, and the Western Blot now finds only lyme antibodies in band 41, which I hear is common in PANDAS cases. Otherwise, she now tests negative. Could biaxin actually have treated this since January??? Though relieved, I am still going to look into it further with an immunologist to make sure we didn't miss anything. I know this test can be inconclusive.. Her myco antibodies remain at a 5 (should be below .9).. Though she doesn't show active infection (IGM's in the 600's) I remain convinced that mycoplasma is a HUGE culprit here. How many others have had problems with mycoplasma and rage episodes?? And has biaxin been the drug of choice for all of you? I think this ugly illness is behind alot - if I'm not mistaken, it makes the immune system susceptible to other infections (even in a healthy immune system).. What is it doing to these kids??? Noelle Sorry, guys. I just saw the other post questioning mycop and rage! Oops... BUT, if anyone has any answers about the lyme test now being neg (could antibiotics really abolish it in 3-4 months time?? Was it a false +??) that would be greatly appreciated!! Noelle
KeithandElizabeth Posted June 26, 2010 Report Posted June 26, 2010 Hello We are also dealing with Lyme and Pandas. So, did you once have a positive Lyme a and was it via IGENEX? LYME can go dormant and usually a Lyme doctor will incorporate a cyst buster such as Tindamax into the treatment to break down the walls of the cysts.
wornoutmom Posted June 26, 2010 Report Posted June 26, 2010 Our doc was going to order the Ingenex test for us, but after months of Biaxin, she said it would turn up negative no matter, since we are essentially treating any Lyme that might be there with the Biaxin as well. Dr T agreed that the Biaxin would interfere with the test results.
KeithandElizabeth Posted June 27, 2010 Report Posted June 27, 2010 My daughter had a positive IGENEX lyme test after being on Azithromycin, but maybe there is a difference with biaxin. You can call the doctor at the 1-800 IGENEX number to verify about doing the IGENEX while on biaxin. I would say it would be important to find out because antibiotics alone do not usually treat Lyme disease since Lyme will eventually hide from the antibiotics and form into cysts. Most Lyme literate doctors will eventually treat the cysts with a drug called Tindamax or Flagyl. Elizabeth
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