eljay1

Thanks, everyone for your replies. We have been treating for yeast all along, and sometimes it is worse than other times. The Rifampin seemed to work in the beginning, and then it seemed to lose its effect. I think that he might be herxing from the Bactrim too. I just needed the reassurance. Thank you all so much for letting me vent!!

It's been quite awhile since I have posted. My son is now turning 8 and has had a PANS/Lyme dx for 3 1/2 years. We have done multiple ivigs which have helped tremendously. He has been on zith with Rifampin and we just recently switched back to Bactrim. We are at the end of our resources financially, so we are unable to continue with ivigs. The Rifampin seemed to be losing its effect, so we turned back to Bactrim (which use to be effective). We are pretty sure he has been battling Bartonella, and it just won't let up. Alot of his symptoms are returning--emotional breakdowns, OCD, more tics than usual, etc. I feel so sad, because he was doing really well for the last 6 months or so. At a loss... BTW, we are seeing both a Lyme and Pandas specialist, but live out of state. Can't afford more phone consults, although we have one more scheduled with Lyme doc in 2 wks. Any thoughts???

We have been fighting PANDAS for a couple of years now and have been receiving ivig for this past school year. I am very careful about what we give my son--he is sensitive to alot of things. I have recently heard that thimerasol is used in lots of ivig preparations. (Makes sense, but I never thought about it!!) Has anyone had this experience, and are you requesting preservative free ivig?? Thanks!

Hi! I was at Dr. B.'s too--I am Elliott's mom (from OH-the room next to you). Please don't beat yourself up!! You are doing everything you can to help your son. Our ordeal began 2 years ago after we vaccinated Elliott. I know it was a combination of things that caused his health to decline-the vaccine was just the straw that broke the camel's back. For some reason, our kids have a higher sensitivity to these things. But we will all find a way out of this. I felt so guilty in the beginning (and I am not prone to that kind of thinking!), but I only did what the docs told me to do at that time. We are all smart, careful, loving moms. It just sucks to go through all of this. Hope you see some improvement soon! We will be back in 8 weeks, too, but I am very careful about what I talk about in front of Elliott (it can cause us problems). I look forward to seeing you again, though!! Jennifer

He has alot of different symptoms--gut issues, allergies, ocd, tics, and leg pains. His ocd has gotten quite a bit better, allergies a little better, tics about the same, emotional issues much better, cognition better--able to focus in school better. I don't know if I can put a percentage on it, but after switching to azithromycin and bactrim, plus ivig, he is doing so much better than last year at this time. One of the major improvements is that he is able to play by himself again and entertain himself (he is our only child and demands alot of attention). Anyway, it all seems to be helping.

That is a subject of great debate! Although the verdict is still out on that, my son has had 4 ivigs and is working with a Lyme specialist as well. We have seen the most improvement (over the last 2 years) with this combined therapy.

So they did ok without the orapred? No increase in headaches?

For those currently doing ivig with Dr. B., do any of you use something besides oral steroids for the side effects? I am particularly wondering about those with Lyme or co-infections. My ds7 has a co-infection, and I am wanting to try to stop using the steroids for side effects (we also use Motrin and Benedryl). He gets headaches following the treatments, even with steroids. Any thoughts??

We were also in CT for my son's 4th ivig. We were in the room next to your hubby and son, and I got to talk to your husband briefly. I don't have a lot of specific advice to offer, because there are so many unique factors with each case. I can only say that we are seeing improvements, so we are continuing on with treatment. The alternatives (with neuro/psych) haven't really appealed to me, and my son definately has an infectious component. I just want to encourage you to keep on digging!! It is hard to trust this process with so many varying outcomes, but like I said, the alternatives don't seem to be solving the problem. I know we will all "get there" eventually. Don't give up!!!

Just thought I would give a brief update on my son post ivig. He had an infusion with Dr. B. on June 22-23. A couple of weeks before the infusion, we got the results that he tested postive for a lyme-coinfection. We decided to continue with the ivig and are seeing a lyme specialist at the end of this month. My son has major yeast issues and seems to be allergic to almost all foods. We did pretreat with steroids and motrin/benedryl (I am very aware of all the risks with the steroid usage, but chose to use them anyway). DS did great with the ivig-- a little headache during the infusion, but overall uneventful. Post ivig, he continued to get headaches for a couple of weeks. He also seemed to catch a bug at the 2-3 week mark. His allergies are just as bad (if not worse--maybe because of the yeast/steroid use). He seemed to really improve with behavior adn energy level from the very start. We have had a lot of ups and downs since then, and with all of the health issues involved, I am not too sure how clear the picture will be for awhile. We are planning to continue to fight each infection, repeat ivigs, and tackle the lyme/co-infections as they unfold. Thanks to everyone who posts--I have found such helpful info on this forum! Continue to press on! Jennifer

Hi--I am usually on the pandas board, but have been poking around a bit on both boards for quite awhile. We were set to have ivig in 2 weeks, but we recently got results back (igenex) that might indicate a co-infection. We are in northeast OH and need an llmd. Several months ago, I looked into the llmd website, but I would really appreciate a recommendation from someone who has been to a doctor. We will, of course, travel if we need to. Thanks!

Thank you! Those words are so uplifting and so easy to forget when we are down. I have been struggling so much with anxiety this week and the psalms always seem to pull me out. Thanks again for sharing.

You're not alone!! I feel the same way every day that we miss out on all of the "normal" activities that the people around us do. Lots of people think I am crazy--I feel that way on a regular basis. But I know my son and I know something is not right. I am still searching for the answers and I get tired of people telling me that I am too involved. Keep going--don't give up!!

I have to say that I am always a little spooked out when I read posts and realize that there are so many others out there with similar situations. I always think we have to be the only ones with string, Izze caps, duct tape, and old card collections laying EVERYWHERE around the house. I finally went to target and bought containers for all of these little collections. Now we have containers everywhere. What happened to my nice little organized life??

Do you mean something similar to the Myer's cocktail? If so, we tried it last summer with our ds6. It was a little traumatic (with the needle and all), but we were able to use a rewards system that helped him alot. The treatment seemed to help boost his immune system and helped with his allergies a bit, but the results weren't lasting for very long. Hope this helps!