Coco--"Old" Mycoplasma infection & Biaxin

[Iowadawn]

Coco-

 

I started a new thread because I didn't want this to get buried in your school thread. Oh.....we had a school/IEP/return to school fiasco today. I am hurt and mad because it didn't have to be. Too close soI don't want to relive it right now!! I feel for you.

 

What I did catch that I want to ask about is "when we treated the 'old' mycoplasma infection with Biaxin, things really started to get better" after IVIG. Explain. You saw Dr. K. what kind of "old" mycoplasma did you have? WHat kind of titer results? Evan's IgG was very elevated, but IgM was negative. about a year ago, Dr. K didn't know what to do about this. I have wondered if he has missed really taking care of this and Evan should be on Biaxin. He had his second IVIG 3 weeks ago. We are starting to see some really good successes. I'll coment more on this at another time. Just wondering about your "old" mycoplasma infection.

 

Thanks! Dawn

[coco]

I have been meaning to post on this but you know how it is, trying something new, holding your breath to see if it works, gets worse, jinxing...

 

My daughter had her first high dose with Dr K last August. We went to him because he was the doctor who had treated the most children. Simultaneously we consulted with Dr. B to have a local immunologist on board to follow Dr. K's protocol, advise and guide us on immuno issues, etc. My daughter was one of his first pandas patients. He was helpful and committed to recovering her. With that said we continued on with monthly low-dose ivig to help her SAID. After 4 months she looked much better "on paper" but behaviorally she was stuck. Never getting better and even slipping further back with each infusion. Dr. K advised us to stop doing the monthly low-dose, as it simply stirs the antibodies and you are perpetuating the pandas symptoms. In our case this was true. In February she had another 1.5 dose. The next 4 weeks were horrid. Week 5 the horrid began to level off somewhat, week 6 better still, but by week 8 she was bad again, not as bad as the first 4 weeks but we felt it was not working for her. After all I had been reading on this forum about co-infections impeding ivig success we then saw Dr. Charles Ray Jones, pediatric Lyme's specialist, who ran a ton of tests on her that had never been run before. She came back with rock-bottom low normal thyroid, strong possibility of Lymes, and past mycoplasma. Her IGG was 5.00 (range >5.00 H, <.90 normal) and IGM 474, with <770 normal range.

 

Dr Jones wanted to treat the possible Lymes with Minocycline for 30 days. Dr. B agreed. Dr. K in Europe. They did not feel that the mycoplasma was a big deal, just a past infection. We consulted with Dr. T. He absolutely said to treat the mycoplasma and prescribed Biaxin for 30 days. Four good doctors. Two confused parents. We opted to do Biaxin, not minocycline. On day 9 of Biaxin a girl who was so riddled with OCD questioning/statement rituals for much of the day had a perfect day. And day 10 was almost as perfect, and 11 and 12. Now we have some blips but they are shorter and less intense. We strongly feel that it was the Biaxin that pushed her through this and maybe treating this will help her healing take hold. She cannot be on this forever, as Dr. K later consulted, and we realize that. And we are past the purity of the theory of "if you try too many things at once you won't know what works" stage. We just want something to work and stay working. Now maybe, just maybe, the ivig can do what it is supposed to do with greater ease. We shall see.

[kimballot]

Coco - thanks for posting that. I have been wondering about the old mycoplasma and how to address that. My son has an elevated IGG, but not IGM. Very interesting. Thanks for sharing!

[Iowadawn]

Coco-Thanks for a very thorough explanation. This convinced me to have the mycoplasma titers run again when our whole family ques up to have blood drained out of us for strep antibody levels. Evan's IgG was 3.96. The elevated mycoplasma seems to correlate with the aggressive/rage/over the top behaviors. I will check this & also ask Dr. K. where he stands on this now.

 

Dawn

[coco]

You are welcome. As I sit here I am still shocked that she is doing soooo much better and continuing to improve after being on this. We are at 2 weeks now and 2 weeks to go. This is the kind of improvement I hoped to see since last August.

[nevergiveup]

I am so glad you kept looking and fighting for your dd. I am so happy for you and your family.

 

My dd had a very bad rsv three weeks ago and came out of it without a major relapse (We did add another abx though). So I am also hopeful, cautiously hopeful.

 

Some day when this is all behind us, we need to celebrate with t-shirts that say "Pandas Survivor". In NYC for a weekend. Gather all families and celebrate. One big loud party.

[Iowadawn]

Coco-Do you know where Dr. K now stands on treating mycoplasma if only the IgG is way high? What was his thoughts with treating like you are doing? I already have an email into him. I'll avoid sending another for now. I'm doing a big Hmmm. Dawn

[coco]

Our conversation with Dr. K re: myco was very brief...we took a chance on calling him the day after he got back from Europe and came to the phone and gave us 10 minutes. Mostly we discussed doing or not doing another ivig. and how my dd was doing 12 weeks post. He was fine with treating and didn't weigh in one way or the other in any detail, but again, the conversation was very short. I give the trophy to Dr. T for this one...he really is all over myco and what it can do. Dr. T told us that the IGG scale on the report only went up to 5.00, (my dds number) and the actual number could be much higher, so he treated based on that. I used to be in love with prednisolone, now it's biaxin...I hope it won't love me and leave me!

[KeithandElizabeth]

Just to add our experience to this....

 

Our son's IGG Mycoplasma was greater than 5 (again, we do not know the actual number because 5 is as high as the IGG goes) and his IGM was considered negative.

 

Our lyme doctor, who did not know of the results of our son's Mycoplasma bloodwork did muscle testing and said that Mycoplasma was doing more damage to our son than the lyme was doing to him.

 

So, we are treating our son aggressively for the Mycoplasma and I am now wondering about these negative IGM values on the Mycoplasma tests.

 

Elizabeth