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Everything posted by lmkmip67

  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.
  16. Thanks for all of the info. Taking notes, and will certainly keep supplements in mind. I am curious to see how Ian does on the TIndamax. He did give orders to go very slow with it.
  17. I am not sure all that was said, but I thank you for posting that. My son has not been helped by IVIG and we are still trying to find what will work for him. It is helpful to me to read things like this because I am not sure Ian will ever be totally free of OCD, even as an adult. So to hear that some manage to push through and build a life is indeed very helpful. And nice to see he realizes all of the help his parents gave him made a difference.
  18. Thanks all! There is an LLMD not too far from me that I can likely get in with if needed. I think she is even one of the speakers at the conference coming up this fall. I decided on Dr. J simply because he and Dr. B converse back and forth. But I wouldn't hesitate to move to one closer to home. if necessary I will ask around for more names if it comes to that. He has had legal woes for a while and so far has still managed to keep going. Hopefully he does for a while longer. But in the mean time we will try this med combo and see how it goes.
  19. That is good to hear. I am hoping we such some success too! Glad your nephew is feeling better!
  20. I just had my phone consult with Dr. J. Now I nothing bad to say about the man, he is very sweet and incredibly brilliant. I did feel that we did not get a straight answer from the first visit. I finally pestered the office and he called me back. He said he feels Ian is dealing with Lyme. He said to stay on the combo of Augmentin and Azythromiacin, and wants to add in a cysts buster (I forget the name). Now I have a few questions from those with more experience here because between Dr. J's speaker phone and the fact that he tends to mumble a little, I may not have heard everything. Ian had
  21. Thanks for the feedback, everyone. I am exhausted, yes. lol All the info is overwhelming too. But I am jotting things down to look into when I have time. Regardless I do think we are going back on SSRIs. I am trying to give it a couple more weeks (that will make it 5 weeks off) but even Ian is begging to go back on because he just doesn't feel good. My feeling is if Dr. J does not feel Lyme or bartonella are issues here that he likely won't be treating him for anything. But we also see Dr. B in 2 weeks, so I will discuss some of these things there as well.
  22. I am going to ask him that. He said Ian had made antibodies for lyme though, so I have to ask what he means by that then....If he doesn't think he is a lyme kid, then that is good enough for me. But I need clarification on that, and I also am trying to think about anything else I should ask him. If he didn't feel he was lyme, why go back for a follow up in Sept, then...
  23. WE have only seen him once, but I am having a phone consult with him on Sat. We shall see. And not sure about Dr. L I have not looked into it. I felt like we already had a very good PANDAS and Lyme doctor on board...so didn't think it was necessary to look further? Not sure....
  24. I finally got a hold of Dr. Jones office to talk to him more about my son's case. Ian went to see him in late April, never heard a thing until I called for blood work results myself. Was told Ian was exposed to lyme, but test was negative (Igenex western blot). But to stick to Dr. B's protocol for now, told to me by the nurse. Well, Dr. B's office told me to press on with him, so I did call back yesterday, left a message. Did get through today and they set up a phone consult with Dr. JOnes for me on Saturday. So I am hoping he actually calls. I am not being charged, I guess. That is good since
  25. Yes, we have tried steroids quite a few times. In the beginning he got amazing relief from them, when he was diagnosed. Since then he has had a few more tapers during flares, but does not really see any further relief. I am not scared of steroids since my daughter and I have bad asthma, we have seen our fair share of them. I think Ian had strep about 5 months after H1N1. But looking back I can see some of the issues seemed to start around the time of the H1N1. he developed a tiny throat clearing tic that went away in about 3 weeks. Then when strep hit, it came back and stayed, them more ti
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