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lmkmip67

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  1. 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!
  2. 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.
  3. 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.
  4. 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,
  5. Thanks for the recommendations! I will check the health food store and if they don't have any of the above, I will order.
  6. I am currently thinking about having my son try Intuniv. I have heard it can treat tics and mood issues, also ADHD type issues.
  7. 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
  8. 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 re
  9. 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
  10. 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
  11. Have you tried melatonin before bed? My son has issues with sleep and it has been a lifesaver.
  12. 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 h
  13. 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.
  14. 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 h
  15. 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.
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