lmkmip67 Posted August 16, 2013 Report Share Posted August 16, 2013 (edited) 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? Edited August 16, 2013 by lmkmip67 Link to comment Share on other sites More sharing options...
LNN Posted August 17, 2013 Report Share Posted August 17, 2013 It could be herxing but when we used combos that produced prolong herxing, we switched the combo. It's one thing to have to endure intense mood issues/OCD for 2-3 weeks, but after so many years of Pandas, no one in my family had the emotional resources to handle an intense herx that lasted 5, 6, 7 weeks once the lyme dx came. So if it got to be more than we could handle, our LLMD would look for a different mix. DS stayed on zith for the entire lyme treatment (2.5 yrs). We rotated into that the following: augmentin, bactrim, omnicef, rifampin. We also used tindamax for 5 weekends but had to stop - DS couldn't handle the herx. Tried it a year later and had to stop after 2 weekends. So not every abx worked for us. But DS eventually beat it. Perhaps ask about switching augmentin for a different extracellular abx. Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 17, 2013 Author Report Share Posted August 17, 2013 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. Link to comment Share on other sites More sharing options...
LaurenK Posted August 17, 2013 Report Share Posted August 17, 2013 (edited) I've found myself worse on several antibiotics, yet it was not herxing. My personal opinion is that herxing is put on the table as an option for way too many adverse reactions here. Getting better after stopping a medication could simply imply a negative reaction to the drug such as a sensitivity. Adding it back may not be herxing at all. It may simply mean your child cannot tolerate it for a completely unrelated reason. Antibiotics can affect a lot, especially in high doses or in combinations. Particularly, in very high dosages they can affect gut flora which can aggravate a pre-existing auto-immmune condition. They can also affect vitamin and mineral levels, the th1 and th2 arms of the immune system, and neurotransmitters. They certainly are not harmless pills. I would be very very careful with combination antibiotics and LLMD's unless you absolutely need them. Although many here can attest to better health with them, there is also a lot of negative press surrounding these types of doctors and their overuse of antibiotics. At one point, I believe Dr. J even had allegations against him as well. Despite that they were dropped, to me that is a very big red flag. http://lymedisease.org/news/lyme_disease_views/502.html Augmentin never made me worse but I did certainly feel worse on levaquin, biaxin, and cefdindir, so I do understand. I had weird neurological and psychiatric symptoms while on them. If you look closely at all the side effects, sometimes you can find others who may have reported the same thing, and certainly not everyone has a tick born infection. Imkmip67, I wouldn't give up on the PANDAS route just yet simply because IVIG was ineffective. There are other autoimmune diseases that do not necessarily respond to IVIG but other autoimmune treatments work very well. There are cases of IVIG resistant kawaski's which resolve with IV steroids, pex, rituxembab. etc If you do have chronic infections, you could also look at homeopathy. It does not have as many side effects and has worked very well for some on this board. PS, I have experienced very short lived flares with abx due to dyes in them. I felt immediately worse after taking them and then better within a couple of days. When I order the same drug without the dye, I only felt better right away. Good Luck Edited August 17, 2013 by LaurenK Link to comment Share on other sites More sharing options...
DsMom Posted August 17, 2013 Report Share Posted August 17, 2013 Augmentin didn't make my DS worse, but definately Biaxin and Azith did...and I'm not thinking it was herxing either. So I agree with LLM and LaruenK; I think that while a herx can defiantely happen some of the kids are just super sensi to some of the Abx's. Link to comment Share on other sites More sharing options...
T_Mom Posted August 18, 2013 Report Share Posted August 18, 2013 I have been wondering about the same thing, if being on Augmentin and Azithro can be causing problems and activating rage/OCD.... Given that our d was also given Tindamax, and after the second weekend we were calling Dr J in a panic as she was becoming worse, worse, worse, (he told us to stop it immediately, btw)... Perhaps some kids just get worse on too many antibiotics. The herxing paradigm makes sense, but if cutting back, or stopping antibiotics helps??? -- seems a no-brainer to me. Link to comment Share on other sites More sharing options...
momcap Posted August 18, 2013 Report Share Posted August 18, 2013 My DS raged non-stop the entire 30 days that he was on Augmentin. Total nightmare! I don't think it was a herx. He herxed badly on Rifampin, but it was flu-like along with psych and we pushed through it and he had a major breakthrough with huge reduction of symptoms after a couple of weeks. Augmentin was pure rage, no physical herxing, and no let-up at all. Check out this article, particularly the section on Clavulanic acid (Augmentin = amoxicillin + clavulanic acid). It talks about clavulanic acid increasing dopamine release, and possible effects on glutamate transmission. VERY interesting stuff! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/#R5 Link to comment Share on other sites More sharing options...
SSS Posted August 18, 2013 Report Share Posted August 18, 2013 (edited) Well, that is interesting about the Augmentin and glutamate, which I am convinced is an issue with my dd. We tried Augmentin 1 time (by itself) a few years ago, and on the 2nd day, at dinner time, she slid off her chair, onto the floor under the table, and wouldn't come out, wouldn't talk, curled up. It was awful. At the time I chalked it up to being too harsh on her stomach, pulled it ASAP, and never tried again. Now of course, for some, Augmentin has been a big ticket/ healer. Saving Sammy, right? And some others on here. It's a fine line at times, I think, and unfortunately experience, arming oneself with knowledge, knowing closely your child (or self) and plain intuition come into play- and a trained Dr. for advice. Edited August 18, 2013 by S & S Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted August 18, 2013 Report Share Posted August 18, 2013 I have to admit, this conversation is scaring me big time. My son has been in what id say i the worse place ever since he was diagnosed officially with pandas in march, and since this whole thing emerged more than a year ago. This horrific period has emerged starting august 1, and the response of his doctors is to put him on more abx to address the infection, including augmentin and soon to be azith... His developmental ped, who has been treating him for three years, since when all he had was a serious language delay but was a happy and sweet kid, wants to put him on clonidine or tenex to addresssing the ticcing and touretting -- says it wont get in way of abx, but is worried that he wont be able to function in school in the current state. He's already lost a year of his life to this.... Link to comment Share on other sites More sharing options...
searching_for_help Posted August 18, 2013 Report Share Posted August 18, 2013 It's all so difficult to determine, but when our daughter was on high dose Azith for 2 weeks, we saw what we thought was a herx on days 3 through 5 (very sore arm muscles, more anxiety, etc. ), but after that she did better and better. I guess, to me, that would be the difference. Getting to a better state shortly after the decline. Sadly, it's hard to know how long to wait. Link to comment Share on other sites More sharing options...
lmkmip67 Posted August 18, 2013 Author Report Share Posted August 18, 2013 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. Link to comment Share on other sites More sharing options...
EAMom Posted August 18, 2013 Report Share Posted August 18, 2013 T. Mom --do your kid(s) have Lyme? Is that a new finding? Link to comment Share on other sites More sharing options...
T_Mom Posted August 20, 2013 Report Share Posted August 20, 2013 (edited) Sorry double post Edited August 20, 2013 by T.Mom Link to comment Share on other sites More sharing options...
T_Mom Posted August 20, 2013 Report Share Posted August 20, 2013 EAMom , youngest d (who has had a terrible year -- IVIG and pheresis) ... Finally getting back to herself -- had a few positive bands which were not CDC positive, but both Dr Fallon (NYC two years ago) and then Dr J (Conn) this past spring thought merited "treatment" -- 8 weeks of Doxy by Fallon and Dr J felt the months of Augmentin plus Azithromycin would have already been treating it-- Was she really positive? I don't know, but I do know with pheresis and CBT she has improved these past 7 weeks . EAMom 1 Link to comment Share on other sites More sharing options...
DsMom Posted August 20, 2013 Report Share Posted August 20, 2013 I apologize as this is off topic but: T.Mom, Can you PM me? LLM suggested I contact you but I can't PM you for some reason, although I've tried quite a few times. If you can I would surely appreciate it, and then perhaps I can reply since the system won't let me contact you directly? thanks in advance!! Link to comment Share on other sites More sharing options...
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