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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. Busy office!
  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, 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!
  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 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.
  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 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.
  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 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?
  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 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.
  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 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?
  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 3 rounds of Igenex testing, the first round was the whole 9 yards, 2.5 years ago. I posted the results here and was told it looked very Lyme-ie. I did not explore it at the time because it wasn't positive according to CDC standards, and we had not tried IVIG at the time. We made the decision to try IVIG as it was covered totally with our insurance. After 4 rounds of that and no results, we tested again, the western blot. He has less markers that time, but still some questionable results. Dr. B said lets try HG IVIG for 4 rounds since Ian had also gotten a vaccine before I realized he shouldn't. SO we did that, and still saw no improvement. One appointment Dr. B looked back at the initial Igenex tests and said, if he knew all he know then about Lyme, he would have called it a positive and highly encouraged me to call Dr. J. So I did. We saw him and did the WB again. Dr. J said he clearly was exposed to Lyme bacteria, but never did call with the test results. The third time he had less markers, but still one positive on a relevant lyme band. I had to call the office for the results. He said to stay on Dr. B's combo for the time being. I finally called back again because I didn't feel I had proper follow up from them, and they scheduled a phone consult for me. He called right back at the time appointed so I was very happy with that. He was very thorough and informative for the most part. He did say he feels it is Lyme, so lets add in the cyst buster. Now Ian has been on the combo of augmentin and azyth for 6 weeks. During this time (I should not have done two med changes at once, I am learning that) I also decided lets wean off prozac. Ian flared. Yeah, no kidding. lol So He has now been off prozac for 4 weeks. Last week he was NOT good. This week he is better, but he also has a nasty head cold. SO, here we go. Some of y questions. Is augmentin and azyth a good combo for Lyme? Maybe when I thought he was flaring, was it perhaps some die off or herxing? I attributed it to the prozac weaning and the OCD flaring up, but maybe not? This week he is a bit better, OCD is down a bit, but still there much worse than on Prozac. He was just SO bad this week I notice any little improvement. So at this point I don't want to put him back on the prozac because we are introducing a new med combo and I want to see what is going on with that first. Another question I have is if he tests almost positive the very first time (he was literally one + off, if I recall, what does it mean if with each of two more tests, he is less towards positive every time? I thought Dr. J said something the first appointment how they can stop making antibodies towards the Lyme long term if not treated? I did not ask this time, and so much info was tossed at me during the first visit, I admit I can't recall it all. But is that possible? I could dig out the tests and be more specific but I have to run to Lowes to get a piece to fix my kitchen sink (doing it myself since I am so poor from all this kid's dr.s visit, LOL). I think my last question or two, what is the best combo for lyme? and if it is working, how long does it take to see real improvement? Sometimes I think I should just move to CT. lol I am trying to keep a sense of humor, and it is easier this week since Ian isn't quite as volatile. Oh, one more. If he starts to herx, is there anything I can do to ease the symptoms since Dr. J did not really address detox..... Thanks so much for humoring me. I am hoping FINALLY we are on the right path! Lisa
  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 I feel like I dropped $1300 for the appointment and bloodwork to be left hanging. I know they are very busy, and Dr. Jones seemed very nice and knowledgeable. My head is swimming with so many replies to a few of my posts as what to look into. Everything Ian has been tested for, has been considered negative. He did have some significant activity on where Dr. Jones said he had been exposed to lyme in the past....I understand there is also no firm test for bartonella? He did some test for that (forgive me, at work and test results are at home, and my brain does not work well at retaining names of tests and such) but that was negative. I am wondering what I should ask for though from Dr. Jones. Dr. B's med combos are not doing much except keeping tics down and even with flares they crop back up a bit. I expected Dr. Jones to try some sort of treatment, but he kind of just let it fall by the wayside. If there was some lyme activity shouldn't he treat for it? I have also heard some say they never had bartonella symptoms but they appeared once treatment started. Should I push for that? So confused but want to use the time, presuming he does actually call, wisely to figure out something. I have a follow up appointment booked in Sept, but if he isn't going to bother treating Ian for anything, why follow up? ANy input is appreciated. THanks!
  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 tics developed that summer, leading us eventually to Dr. B in sept. No improvement from typical PANDAS treatments lead Dr. B to test for Lyme. He had some hinting of something in specific bands, even though the over all test was negative according to standards. So now we are trying to work with Dr. Jones...but not seeing much movement there, either.
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