lmkmip67

we currently see Dr. B but I am just trying to keep our options open here as we have not seen much progress. We deal with Lyme and PANS. I don't mind seeing an LLMD, but they MUST be PANDAS/PANS literate. Looking for different options and more local. the 2.5 hour drive is getting to be a lot for not seeing much progress in 6 years. TIA!

Thank you, LLM. I am feeling so much better after these couple of replies. And good to know they can get better without that cyst buster, because we tried it too and he can't handle it. I am feeling more positive now. I think we will ask about another combo, and go back on the prozac, low dose, for a while. Try to get some quality of life back.

Thank you! That gives me a couple of ideas to ask about anyway. I just wasn't sure what ones were used to treat lyme beyond maybe 3 or 4 that are common. Yes, that is what he is taking, I checked the bottle, Tindamax. I don't think we will keep that up, it does NOT agree with him. Can I ask what supplements you have found helpful? I am considering coming back up here in MA to a local doc who also is an LLMD to treat Ian (she was at the conference in RI, and is knowledgeable, I believe). Closer to home. Dr. J is great, but yes, I feel like we get lost a bit and I have to stay on top of things. Busy office!

I haven't posted in a while, but we are still battling the lyme thing as the latest path. A quick run down as I know not everyone knows even who I am. Ian, 10, Pandas for 3 years now, 9 ivigs, no real improvement. Iffy lyme results with igenex, not positive, but Dr. B said looks questionable, Dr. J said yes, treat for lyme. We tried a combo of azyth and aug. this summer, Ian flared (maybe herxing, but it never ended). The Aug. seemed to be the one setting him off. So stayed just on Azyth until seeing Dr. Jones in Sept. He put him on azyth and suprex and the cyst buster, Major flare or herxing, whatever you call it. But we had to back down again. Had started them all at once, so started again slowly...adding in a bit at a time. Got up to the two antibiotics and one cyst buster twice a week. He flared, but we held strong for 3 weeks. Ian and i couldn't do it anymore. Flared, emotional, OCD bad, anger, crying fits, bad, bad. So Dr. J's office said cut back to just one for a week and call back. Ian calmed a bit, but is still overly emotional, ocd, etc. Very irritable, no focus. He was on prozac last year, it helped some. But with so many meds for the lyme, I wanted to take him off. So many meds at 10 can not be good. But now I am seeing Ian can not handle a double antibiotic dose, plus cyst buster at all. It has been going on three weeks now with just azyth again. Ian calmed a bit after the triple drug cocktail was stopped, but he is still the same, needs treatment, OCD, tics, all that fun stuff. He is in school, he plays hockey. We pay for it all with OCD rages at us, mood, arguing, swearing, etc. We discipline, but you know how that goes. When these kids are not feeling well, it doesn't do much good. We see Dr. B next week, but really we are under Dr. Jones now too. I need to call Dr. Jones back but I am wondering what I should ask for. DH and I have determined we can deal with maybe two antibiotics and putting Ian back on prozac for a while. It helped his OCD quite a bit and quality of life is a big deal right now as we have none. Does this sounds like a reasonable path at the moment? if so what two antibiotics would be a good lyme combo? He handles azyth fine. Suprax sets him off too, it seems. oR maybe it is the combo. Or should I ask if Ian should be on one antibiotic and a cyst buster? I am not sure what might be a good step to try next. Ian has no confections that we can find. He has been a pin cushion for years now, nothing else is found. Sorry for the novel, I just want to see if anyone had input on possible combos to try next. Thanks!

Thanks for the recommendations! I will check the health food store and if they don't have any of the above, I will order.

I am currently thinking about having my son try Intuniv. I have heard it can treat tics and mood issues, also ADHD type issues.

Thanks, everyone! Yeah, we can not go forward as is. I did call Dr. J's office yesterday and they suggested stopping for 48 hours, everything, then call back to see what Dr. J would want to start up again. So I decided to pull the Tindamax and Suprax for now, and keep him on azyth as I know that he does ok on that. I worry about strep exposure this time of the year. I am away for the weekend (thank God I have a girls weekend planned with a friend, I seriously need a break) so am actually going to keep him just on the azyth through the weekend, and then see how he is. I find it takes more than 48 hours to calm down, so think we need more time than that to tell. I will call on Monday and see what they think. Maybe we can take off a couple of weeks and then pulse the other two or something. Ian is not 100% right now, I would say maybe 65% (I always think of the Saving Sammy story and how bad he was, not leaving the house and such). Saying that, I want to use these few days to really make sure his probiotic is right as well. We get a good one from the health food store that is for children, but does anyone have suggestions on the best one or these kids, with out strep strains in it, etc? I would prefer one that does now have to be kept cold. It just helps us be more consistent if we can keep all the pills in the same area of the kitchen on hectic days.

Ian(10)saw Dr. J about 6 weeks ago. He put him on two antibiotics and a cyst buster. We have had to work up slowly to taking all of them and we are still only taking the cyst buster once a day, two times a week. He has been able to do this for 2.5 weeks. But his mood is rotten. Just rotten. I am not sure if it is herxing or if the meds are just not agreeing with him. I am going to call the office today because we really can not keep on like this. I gave it a couple of weeks, but seriously, we can't keep up like this. I also give him probiotics and have done epson salt baths, etc. Nothing is really helping the mood and arguing constantly. The weird thing is that this summer when he was on two antibiotics, different, the augmentin really didn't agree with him so we took him off and kept him on one, azythromicin. And he was much better mood wise, even seemed a bit less OCD. I am tempted to strip him back to just one again for a while because honestly we can not live this way, he is losing screens constantly, his mood is rude towards us, name calling, arguing, things like us clearing out throat, even talking baby talk to the pets, he flips out "STOP!" I am imagining that Dr. J will suggest scaling back to only two for awhile, but I would like to scale back to one for a while and see how he does. Is that unreasonable? Sometimes I wonder if he is just on too many meds. I am tired of medicating him and seeing no results, and seeing him do better OFF of them. Thoughts? Yes, we have tested for all the co-infections, among other things like viruses, etc. There is nothing else found. I do not have the patience or funds for more intensive testing, or new doctors. After 4 years, honestly i am exhausted. I hate to give up on Lyme too early if that is indeed it (we have tested 3 times and Dr. J says he was exposed to the lyme, but his markers for so few....so I don't know. But honestly, I can't keep on like this any longer. I expected some herxing, but we are heading into week 3 of these issues and it is really wearing on all of us. He can't take any more pills right now, even supplements. His stomach gets upset. He is on claritin and uses melatonin to sleep. It is just too much.

We are in about 2 weeks with a new lyme combo with Ian, age 10. We have had to go slow with the two antibiotics and cyst buster because either stomach issues or mood issues (herxing, maybe). He also takes probiotics. Anyway, I was reading some about lyme and am curious what others think. Can we ever really get rid of it? Kids with lyme are on powerful combos of drugs, is there an end in sight? Will we ever be able to take our kids off these medications and be confident that they are well and won't have to live on drugs their whole life? I have to be honest and say I am really concerned about the level of medications Ian is taking at such a young age and for such a long period of time. And if not antibiotics, have others had success with homeopathy for lyme or if you don't use antibiotics are you stuck with bottles and bottles of supplements to manage it? It just seems like a gloomy road ahead, even if he does improve. Thoughts?

These are some great ideas! I will likely be having Ian's fall IEP meeting in a few weeks so will be keeping some of these things in mind for him. I love the idea of taking pictures, but Ian would be goofing around on it instead and not using it for the intended purpose. lol

Have you tried melatonin before bed? My son has issues with sleep and it has been a lifesaver.

I put him back on it for 1.5 days because he sounded like he was getting a sinus infection or something, but his mood declined again. he has been on it for almost 3 years, so I never thought to even look at an antibiotic for some of the issues. But then he has been on prozac for about 1.5 years...so that could have masked some of the mood issues if augmentin was causing them. From now on I am only doing one new switch at a time so I can really see what is going on. I did take him off it again and just sticking to the azyth. for now. I am going to talk to Dr. B about it tomorrow, and see what he thinks. I am also going to ask if there is another good lyme combo, perhaps he can call Dr. J and see. But I am keeping Ian on just the one for at least a week to see if he calms down. Last night he had another meltdown, but I gave augmentin the day before...so could have still been in his system. I am going to look on a weekly basis and take notes. I may not even start the cyst buster yet as I want to see how he does off aug. first and I won't be able to tell if he starts herxing right now. So confusing. Trial an error, I know.

Yes, I agree. You can only handle that for so long. I put him back on the augmentin two days ago and after 3 doses he was a bear again, so I took him back off. We will see how he does this weekend and I will talk to Dr. B about it on Monday. He may have to consult with Dr. J, but hopefully we can find something that isn't so brutal on his system and our nerves.

I just weaned Ian off of the prozac, but it has been 6 weeks now. So I think it is out of his system. he did seem to flare. But randomly I ran out of augmentin before the azyth he is also on. Had to get the script filled and he was off of it for oh 3 days. He was better! not as much OCD or anger. Not perfect. But I started the augmentin back up when it came in and oh boy, OCD, rages, meltdowns. Something is up with that. He is under this combo for lyme. We see Dr. B on Monday, and Dr. J in 3 weeks. But if I find this is the augmentin lately (I am wondering if the prozac masked this....it did help the OCD a bit) what other combo can he be on for lyme? And has anyone else had issues with augmentin causing kids to flare?

I haven't started him back up on it yet and he is doing better this week. Everything seems dialed down a bit. So as long as he is doing better I am not ready to put him back o. By doing better I just mean not so many rages, OCD not quite as bad, etc. We are also starting lyme treament with another medication (cyst buster) so I want to see how he does with that first.