Post 3rd Ivig and things are not going well

[ptcgirl]

My almost 13 yr old daughter finished her third Ivig almost a month ago and things are not going well this time around. We are so confused. She did amazingly well after the first two but at 8 weeks would relapse due to illnesses. She previously had Lyme, Babesia, bartonella, and mycoplasma but was cleared. However her most recent blood test showed Igg positive for bartonella and the bartonella rash came back. We started treating it with azithromax and bactrim in addition to augmentin for pandas. OCD is ramped up and night times are difficult for her. She is working so hard and this stinks. What do we do? Her drs are dr b and dr j for Lyme. Both in ct. So confused about what we are doing. I hate this.

[cobbiemommy]

Call Dr. B ASAP. In our case, when things went south (due to allergies being horrible) he prescribed a steroid taper. It worked very well to calm down his emotional rollercoaster. We also see Dr. B and Dr. J.

 

Hope today is better.

 

Cobbie

[sf_mom]

Obviously you are not done with Bartonella treatment and if the Bartonella has not cleared the Lyme is probably still there as well.

 

We are two years into Lyme treatment (not currently doing any hdIVIG) and have also seen Bartonella rashes appear recently on two of three children (just this morning after bath for one child). It is a difficult recovery process and your DD's increase in symptoms are most likely a herx response to recent rotation in antibiotics. Have tried any natural anti-inflammatories, yet? If not, I would highly recommend something like Enhansa. It has been extremely helpful to my kids.

 

http://leesilsby.com/enhansa-homepage

[EAMom]

I thought you didn't want to do steroids if there was any chance of LYme (or other tick diseases I assume).

 

I agree with what SFMom said, she is probably relapsing due to tick borne diseases.

[LNN]

You have my complete sympathy. My DS did 1.5 yrs of lyme/bart treatment and he was symptom-free for almost 3 months, so he went off all abx over the summer. As expected, he tanked and is now back on combo abx. I knew it wasn't gone, but it's still so frustrating to not be done. DS has some school things coming up but once that is past, we'll be doing some more cyst and biofilm work (which will of course set him back and I hate knowing we'll be making things worse for awhile).

 

DS also had a bad time after HD IVIG - prolonged herx. So I've walked in your shoes. I think calling Dr J's office is a good idea. When my DS hit his wall, we found KPU/pyroluria. We see a different LLLMD - not sure how Dr J feels about KPU. But when we treated, he made an incredible leap in recovery. So maybe something to ask about. Also, detox - tons of detox. Different things have worked and not worked for us over time. But whatever you can do to help the body get rid of junk is a plus. And don't forget the mortin.

 

No easy answers. But just keep putting one foot in front of the other. It gets better.

[lismom]

We are 6 months into cyst/biofilm busting and only recently are seeing the benefits. This after 1 1/2 years treating bart/lyme. Have to, have to, have to treat cysts and biofilm. These bugs cannot be irradicated withouth this. Herxes were not good at times in the beginning of busting and took 5 months to work up to full strength but no choice in this. This is a must.

[ptcgirl]

Thx for all the replies. Last year when we beat Lyme and the co-infections she was on augmentin, rifampin, tindamax and enula. This time dr j has her on azithromycin and bactrim. I wonder why the change. Today I didnt give her any abx. I just want her to have a breather. She seems better to me today. She tries very hard to hide it so that I won't worry. I hate this for my child and all of your children too. I want her to be able to live without this awful disorder that is robbing her of the last years of childhood. I'm so depressed today just thinking about it. The ups and downs are so hard to deal with. Hope comes with the good times and I am grateful for them but they make the low points even harder. I just want it to go away and leave us alone. If you are a praying person, please pray for my child and all of the others hurting. I'm doing the same.