bobh

We haven't had that experience - our gains with have been much more gradual. But each child is different, and I am not at all surprised at your different experience. One explanation might be the immune-modulatory properties of some abx. In other words, in addition to fighting infection, some abx might be anti-inflammatory (or do other stuff), and it might be those other properties that are keeping a flare at bay.

Thanks for posting - I found this link in another group and filled it the survey already. I would like to encourage others to fill it out - it takes only 10-15 minutes, and the information should be valuable. (I am not connected to the survey, but believe in the value of this kind of information).

Once you are in this group, type "low dose immunotherapy" in the search bar (at top right), and you will see 26 other posts on it. I haven't read those 26, or tried LDI, but I have elsewhere read some reports of others trying it. It doesn't seem to have been a clear cure-all, but it might help some. Advocates may over state benefits of a product, very especially if they have any financial incentive. The only thing that matters is how your child does on it - give it a shot and let us know! The best is to have some objective measurement, to reduce the risk of fooling ourselves into believing something we want to believe. Myself, I measure my kid's daily use of a liquid soap - it seems to be well correlated to his OCD because he does a lot of hand washing. That gives me a hard number, and if it (statistically) goes down when he goes on something, and up when he goes off it (I trial him on and off several times over a period of time), then I very confident that product helps him, and also works on a short time frame. There are other things that could be counted or measured (such as how long it takes my kid to settle into bed, with his OCD) and tracked over time.

Yeast is probably a reasonable guess. Our son did not do well with probiotics (several made him worse, though I never trialed sach b), so we felt we had to bring out the "heavy guns" and use a prescription med like nystatin. Nystatin doesn't absorb into the bloodstream, so it has some inherent safety that way compared to most meds and supplements. If it is yeast, be prepared for a herx on nystatin - might need to start slow.

You did mention your moldy house. You can also search here for mold and find a lot of discussion - it is a recognized environmental trigger at pandasnetwork.org, which is a rich source of info in case you are not aware of it. Do you have any option even just to try a different location for a week or two, to see if there is a difference (including when you come back)? I would tend to believe that, with a lot of patience, you could find something that would help your symptoms, possibly only somewhat like Xifaxan has, but perhaps much better. It would take work and energy that you may not have. So, lean on us here, ask questions. This forum is not as fast-paced as most facebook groups, but there is to be a wealth of experience here.

The introduction of supplements certainly could (in general) cause a problem, including how they react together and with what was being taken before. To prove it, stop them and see what happens.

We have had a bit of urination frequency symptom, but not as severe as 3 times in an hour and a half. Our clearest symptom in this area was wetting the bed overnight, at the worst, about every 3rd night or so. This might not be exactly the same thing you are talking about, but we always interpreted it (right or wrongly) as indicating that there was a flare, and some trigger around that we tried to figure out. We took that interpretation because it was what we read as going with flares, and indeed, we did experience other (mainly OCD) symptoms worse when his urinary trouble was worse. In our case, the last time we dealt with the problem, we eventually found out that he had some gum disease (a teeth cleaning set off the flare), and whatever was getting into his bloodstream through the diseased gum was setting him off. Better brushing and regular mouthwash (which he still does now, over a year later) seemed to solve the problem for us. Sometimes, you don't have good evidence for a trigger, and you can only guess and try to take steps on the best guesses.

I am so sorry to hear about your struggles. Have your symptoms changed since you started the abx (antibiotic)? I don't have any experience with adult PANDAS, but can easily imagine that what we see in children can easily translate to what you are describe as an adult. If your symptoms did get worse since the abx started, search "herx" with the dialogue box in the top right corner, once you are in this group (rather than the entire site, or just a thread). That will give you a bunch of hits on experiences of getting worse before getting better on abx. Descriptions of herx are usually dramatic, but that might be because only the most dramatic reactions are noted and reported - there may very well be such a thing as a slow, drawn-out herx.

Yes, her complaint does have merit, in my opinion. Wikipedia is not very trustworthy for things that are controversial, because the answer it gives is just whatever side of the debate happens to control the page edit at that point in time. Here is a story/podcast on this issue: http://www.cbc.ca/radio/outintheopen/after-escape-1.4474473/canadians-claiming-to-have-electromagnetic-hypersensitivity-feel-forced-to-escape-modern-life-1.4474478 It is even couched with some doubt by the interviewer, but according to the interviewee, there are plenty of folks that are super-sensitive like him. I came to believe him after hearing the podcast - he is an articulate professor. There are lots of things that are like this: 10% of the population get sea-sick on a boat - that seems to be enough to say that it is not just in their heads. A similar percentage may be affected significantly by the vibrations of large wind turbines if they are nearby, but we don't generally seem to be believing them, yet. What if the percentage for some things (like this) is lower still? To me, the human body is so complex and diverse, these kinds of rare reactions by some would (to me) seem possible.

Ok, you've been through the wringer with detox ideas in mind. I am not in your situation, but if I were, I would be tempted to try to do my own independent check on the "irreversible consequences" question. It is probably a longshot that every doctor you have seen on this could be wrong - but many doctors collectively being wrong is not unprecedented in history. What are the case studies of that damage - can I read them somewhere. If none or its anecdotally weak (i.e. each doctor has only heard of one case, and most of them are referring to that case), that would make me suspicious. There are folks that have pushed through abx more, I wonder what their actual experience is. Of course, irreversible damage is hard to measure.

Ok, here is a spreadsheet attached that includes a brief description of the tonsillectomy experience, and then a link (all but 3 to a thread here at ACN Latitudes) if you want to read more. (The hardest part of this was actually weeding out duplicate responses in different threads). tonsillectomy_results.xls

It is quite common for teeth cleaning to cause flares - bacteria in the mouth have access to the bloodstream through diseased gum, and that triggers the flare. Dr. T. has also reported that something between 10% to 30% of all those with autism have PANDAS/PANS (not sure if he was referring to just the kids, or all adults too). He said that at an Autism One conference - I can get you the link if you want it. It is also true that SSRI's can actually activate symptoms, according to a 37-person study done by Dr. Tanya Murphy. I believe that it was 13 of the 37 were extremely sensitive to SSRI's, and got worse even on small doses. When they started with 1/10 the dose, that seemed to help.

Sorry that I didn't see your response earlier - and I don't have the spreadsheet from where I am now. I hope to remember to attach it tonight, when I am at home. On "only" 4 positive tests by age 5: I guess it depends on how many times you swabbed. But given that false negatives is somewhat high for swabs, it seems to me that 4 positives by age 5 may not be that low. (I guess it might be if you swabbed dozens of times).

I am with you on that aggravation. They aren't helping, "so don't you go to the internet for help." I would like to use some expletives here on how I feel about that, but am restrained by respect for the group and site. How old is your son? There is one phychiatrist listed for Wisconsin here: http://www.pandasnetwork.org/research-resources/us-providers/ , and if you check nearby states, you may find others similarly close to you.

So sorry to hear about your struggles. I have not dealt with bartonella, but wanted to ask about the pulling back when an abx worked. Do you mean that you reduced the dose or frequency, or that you abandoned that abx altogether? As I understand it, when stuff works, it makes one worse, but soldiering through it with reduced dose or frequency if necessary is important to keeping nailing the bad guys. A lot of folks talk about how to detox while doing that. Drinking lots of water while on the abx is probably the simplest idea that might help with detox.

I am not well versed in lyme, but can answer your PANDAS questions: Technically, PANDAS is caused by strep only, but when the same or similar symptoms are caused by other triggers (lyme being one of them), it is called PANS. You can read more about both here: http://www.pandasnetwork.org/ . You can hear a short list of PANS triggers at the end of this 1-minute video by an authoritative doctor: https://www.youtube.com/watch?v=qDuxlDWMgso . Lyme seems to be common trigger for PANS. I have seen some lyme sufferers list OCD and other typical PANS symptoms as lyme symptoms, without mentioning (or being aware of) PANS. It may be symantics, but I believe that PANS is an extra step on top of everything else lyme does.

Once in this PANS/PANDAS group, type cardiac in the search bar (near top right), and you will get a lot of discussion including from folks that have had cardiac issues.

If you type "D-nase" in the search bar (at top right) once you are in this PANS/PANDAS group, you will get 69 hits - lots of discussion about it.

I don't know the true answer to your question, but I tend to argue against it, because I feel that it is an argument that is over-extended by health-care practitioners in cases where there is a biological cause. So, let me turn the tables on the PANDAS naysayers' argument (when they dismiss the link between strep and PANDAS symptoms): There is always trauma around in one form or another, so when a condition rears its ugly head, there can always be a nearby trauma to blame it on. Case in point: Early on, Saving Sammy's mom worried that it was her move to a new house, or a divorce, that caused Sammy's condition ... but it wasn't. I would think that trauma for 2.3 year-old would be more focused on her relationship with Mom, than external news stories that she won't really understand. In other words, any trauma that she has from that event would be all about how you reacted to the event - if you were terrified, then she will be too. If she saw you get over it quickly and return to the loving mom she always knew, impact would be less. If you were a wreck at the time, impact would be more.

We have a PANS son, and had previously noticed some sensory issues in her older sister when she was young (she is now in her 20's). Those particular issues did not last long, but she now struggles with anxiety from time to time (which didn't seem to be noticeable when she was young). We didn't treat her with abx (had no idea of PANDAS/PANS back then).

How has it turned out, sullysmom?

Years ago before we did T&A, I searched this forum for experiences with T&A, and tallied the + and the -. There were more pluses, but a few hard negatives, that I put down to inadequate abx before and after. If you are interested, I can attach the spreadsheet where I did the tally (not on the computer I am on right now).

Haven't seen him, but try searching his full last name in the search dialogue box near the top right, once you are in this group. Or, you can expand to other groups and search there. The search function here I find quite good - seems to work better than facebook's.

No experience with Adler's method. I don't doubt that behavioral approaches can work - but best to try them when not in a flare.

I don't believe the CDC's numbers on effectiveness. According to the esteemed Cochrane reports (Cochrane creates great big meta-analyses of all the studies available on a subject, and creates one honking strong conclusion out of them), you need to vaccinate about 71 people to prevent one flu. That is a really weak result, not economically worth it say some people. Here is the main Cochrane on flu shots: http://www.cochrane.org/.../ARI_vaccines-to-prevent... With all studies, this included about 10 MILLION people. There are some (quite legitimate) studies that showed adverse effects in particular years or places, that is partly what made the overall conclusion so weak. It really doesn't make sense (to me) for anyone even remotely suspected to be immuno-compromised to get flu shots. The point about the shot making the flu not as bad is not part of the "vaccinate 71 to prevent 1" conclusion. I suspect that argument (about flu being less severe with the shot) may not apply as much to those with rogue immune systems that are not doing what they are supposed to be doing.