bobh

So ... the CVID was a misdiagnosis? When they say (for example at https://ghr.nlm.nih.gov/condition/common-variable-immune-deficiency#genes ) that all CVID sufferers have low IgA and IgG, that has to mean quasi-permanent. That is, you surely can't have CIVD, and then not have it, and then have it again when your IgA an IgG swing dramatically down, and up, and back down again.

So sorry to hear about this flare, and the PTSD stress you have as a result. We have not tried Samento, Banderol, Houttuynia, so can't give you any feedback there. Has your son previously been on Cats Claw, Japanese Knotweed and the other herbs that he is on now? I ask because when many things are introduced at once for the first time, you can't tell if he is having a bad reaction to one of them (i.e., not a herx, but something that actually triggers him). We have had that kind of non-herx worsening with some probiotics, for example. If he has been on all of that before and been ok, then I could believe that it is more likely to be a herx. What is the reasoning that the LLMD and ND use for holding off on abx? I am a little surprised, but don't have experience with lyme.

If you put guanfacine (near top right) into the search box while you are in this forum, you will see a lot of discussion about it - lots of kids have been on it. You can also search intuniv - a brand name for the same. I know of one child that had a bad reaction about 2 weeks after starting it - but that is just one case, and every child is different. I was very surprised to find that clonidine didn't have any search hits, but you can try some of its trade names (Catapres, Kapvay, Nexiclon). I have only known of that one used on two kids that I know - one child just got sleepy, another got worse. But again, that is a very limited experience and your child may improve on it.

By the time the parent of a classmate notices, then takes their child in to see a doctor, then gets a positive strep result back from a doctor, and then notifies the school, and the school notifies you, your child has been exposed for several days or more. This strategy is great for awareness, but beside not addressing the strep carriers, and false negatives, it doesn't address any other trigger, such as mycoplasma. If your child is very easily triggered by nearby sickness, another approach might be to yank the child from the class if there is someone coughing or sneezing "incessantly", or someone missing due to any sickness. By the time one person in the class is missing, it is already going around, and others already infected by that missing person but not yet sick will soon be multiplying the risk. This way, your child is protected sooner, protected from mycoplasma ++l, and from those that have strep but don't know it because they decide not to go to the doctor, or any other failure in the link.

Many kids respond to NSAIDs (Non-steroidal anti-inflammatoriy drugs, like ibuprofen, advil or aleve). But it is not good to keep them on NSAIDs for a long period. Type NSAID into the search box near the top right (when you are in this ACN latitudes forum), and you will see what people here have said about this way to help get over a flare. You can also search on the specific type of NSAID (i.e. advil) and get more hits.

In Canada, we are not advanced as far as PANDAS (and especially lyme) is concerned. Here, it's as if the medical associations and health care advice to the government are controlled by crusty old opinionated men that refuse to look at anything new, like the kind of people that interrupt and cut your excellent point short before you can even get half-way through it. My impression is that in the U.S., there is 1) simply more people, therefore correspondingly more doctors that can treat, and 2) a private model that is more likely to advance with excursions from the mainstream, as long as someone is paying (if the insurance companies aren't). I think you will do well with Dr. K, if you can get there.

oh - I didn't appreciate that it was a month-long herx - thought it started with the rifampin 2 weeks ago. So if it has been a month of steadily bad, I would be suspicious (based on our ehrlichiosis experience) about all of that not being a herx. (We have had similar experience to you, where herx is really rough for a few days, and for us, all over after a week or so after which DS is better than before we started). Especially since the symptoms seem different than your own typical herx experience, you might investigate the side effects and interaction lists for rifampin and see if you might be having a reaction to it. Even with the extra complication that it all started before the rifampin, I wouldn't hesitate trying to convince the LLMD to agree with cutting the rifampin out at least for a short time especially if you have given this another week and it hasn't improved. But there will be a tricky thing interpreting whatever change you might see then. Perhaps the LLMD has seen longer herxes with lyme - I have to qualify here that I don't know lyme.

Does your psychiatrist believe that there is such a thing as herx? Despite the good documentation for this phenomenon as far back as when they were treating syphilis with mercury (!), some doctors think herx is hogwash. If he does actually feel that way, he has no choice but to explain your recent symptoms another way. They way he did explain makes even more sense if he is a strong advocate of SSRIs, which is typically how psychiatrists lean. I personally would go with your LLMD's opinion, and if it is herx, then (if you can bear this thought), celebrate, because it's good news. It means you have the tiger by the tail. Hold on! We used rifampin for my son's ehrlichiosis (another tick born disease), and if I recall correctly, we had a herx.

Steroids can help, but some have reported symptoms getting a little worse first before they got better. My own experience is that they didn't do anything - so that is also a possibility. I don't think steroids will prevent another flare in the long term, because they are typically only administered for the short term.

Certainly a kid can get over a flare from a cold without steroids - at least we have. Prednisone didn't do anything for our child, by the way - so don't be surprised if nothing much happens. Your first question, "Will immune system eventually right itself?" is like a trick question. I think the right answer might be "possibly only at puberty, or an Ivig, or plasmapheresis". In other words, these children continue on being susceptible to flares because of an autoimmune condition, but one fortunately that sometimes goes away at puberty.

Yes, I have known Dr. Jenike to travel to patients that, because of their OCD, could not leave their homes. I was wondering if he has UK practitioners on his list, that was why I thought contacting him might be useful. I suppose that if he happens to be travelling in the UK, you could try to engage his services, but that would surely be a longshot.

I am not familiar with it, but I see that back in 2008, here: http://truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=10 there was an opinion expressed that it was not so reliable, and that LLMDs were not putting as much faith in it as they used to.

I have no direct experience of sinus scans and surgery, and can't contribute to the medical question. But I really do think you are on the right track by pursuing both of these, so I wanted to encourage you along that difficult "great wall of China" path.

I hate to give bad news about strep at school, but your child is very likely to be in the same class as a strep A carrier without you knowing about it. Because carriers have no symptoms, they will not likely be tested or letting anyone that they are strep carriers. According to this study: https://www.ncbi.nlm.nih.gov/pubmed/3909737, 10.9% of children 14 or under are strep A carriers. That means that in a class of, say, 25 students 14 or under, the probability of having at least one strep carrier is 95.4% (see http://www.vassarstats.net/textbook/ch5apx.html, and put in N=25, k=1, p=0.109, and look at "P: 1 or more out of 25"). Even if the class is only 12 kids, that probability is still 75% (just change N in that calculator). And then, there is the possible exposure at recess, on the bus, etc. I would guess that strep carriers may not spread their strep around as much if they are not coughing and sneezing all over the class room. So it is probably still useful to try to track overt symptoms in the class.

I have never used gofundme, but have heard of one parent with a PANS child doing so. But I think it is too difficult for the PANS patient themselves to orchestrate it! I am so sorry to hear about the demeaning step father. Your biological father is nowhere on the scene? For now, you are doing better on the abx; keep records to document that. Take a long-term view with Mom and try not to let her current response get you down. If you think you might be getting depressed about it all, try to get psych help with that if that's possible, Write back here regularly and tell us how you are doing.

I ditto the above opinions, that PANS/PANDAS should be high on your "likely list". Take care to find a doctor that knows and believes PANS/PANDAS. The worst kind is the one that won't tell you straight up if he/she thinks its bunk, and pretends to play along, not having the guts to confront what he/she thinks is an overzealous/misguided parent. If you can take it, the confrontation is better because it saves you wasting your time. Of course, you can't tell a doctor that they are underzealous and misguided - you just have to move on and find the right one.

Some have reported hallucinatory-like visual symptoms during flares, but I haven't heard anything about this as a symptom well afterwards.

So glad to hear that there is some attention to that sinus problem.

Great question! Unfortunately, its too late to ask in this poll, but its a good question to list for a future poll. If you type "breast feeding" into the search dialogue box (near the top right corner) while you are in this forum, you will get plenty of hits of people discussing breast feeding and PANS. That doesn't give the stats you are asking about, but there are interesting ideas tossed around in those messages.

I do believe that it is a good idea to try different abx's, and that is built into the PPN (PANDAS Physicians' Network) guidelines.

My wife has used a few homeopathic remedies for our son, but I don't believe that they helped in any significant way. In fact, when a non-believing (of PANDAS/PANS) doctor suggested our improvement on abx was placebo effect, my reply was "why didn't this kind of placebo effect happen with the homeopathic remedies we tried before the abx?"

We believe that our son has improved likely partly because of just beginning to start puberty now (he is 13).

Lwei66, so sorry to hear about the suffering (tics less than 5seconds apart - heartbreaking). There is so much that could be said in reply. Briefly: 1) It is hard to be really sure the strep is gone if it is hidden, for example, in the tonsils or other biofilm (where antbiotics have a hard time getting to, as you have read). Elevated antibodies can remain for months. 2) Doing another ASO titre now does have a significant benefit - it will say whether the antibodies are rising (indicating an active infection being fought right now) or falling (typically interpreted as a past infection that is resolving). Doctors are typically trained not to give abx without a positive swab and just one ASOT measurement. But I would still finish the abx - some kids react quickly (to the right abx), others take a month on abx to get better. 3) I am afraid to say that even if he appears to be cleared of strep now, just being exposed to it (now or in the future) can set some patients off. Parents of those kids are hypervigilent about even brief exposures. The flare can actually happen more quickly than it takes for the body to produce antibodies, via the innate immune system. 4) What can you do? Find a PANS/PANDAS-aware doctor and see if that doctor can assess, and if he/she agrees its PANDAS/PANS, prescribe a longer abx trial, and be willing to try several abx's (which one works depends on the kid and the current infection).

Our son has had only milder problems with words, that are usually directly disgusting, so I can't offer any real advice, other than the ERP that has been suggested. I understand it to be a very difficult thing to do, and requiring a good practioner to help do it right. I listened to a podcast on OCD this week, and the individual interviewed said that after seeing (or listening to) a documentary, he emailed a very renowned OCD expert in the U.S. (Dr. Micheal Jenike) that was featured. He got a response, including names of practitioners near the patient that could help with ERP. In your desperate situation, why not try it. Unless a no-response would send you into a tailspin, have you got anything to lose? Dr. Jenike is very aware of PANS, and lyme as a trigger. I'll leave it to you to look him up. The podcast where I heard the story related is here http://shrinkrapradio.com/562-how-ocd-and-stigma-led-to-creating-a-therapist-community-directory-with-mike-fink/, if you are interested.

Maybe ... if I wanted to do this test, I would find and read their 2015 study that they say was done with University of California San Francisco. Check if it the university was paid to help them (like what big pharma does), or whether it was truly a transparent and peer-reviewed study. Then, I would look up both the promoter detoxproject.org and MetricBio (the company that is actually doing the test) and their sister company TGen and see if they have any reports on quackwatch.com or other consumer advocate or review sites. If they have a Wikipedia page, it might be biased, but I would still read it anyway (I feel the same way about quackwatch - not necessarily always on the money, but always full of referenceable info). The fact that the kit costs $125 and that there are no government funding sources may be a red flag, about either a scam or government inaction on a crucial topic.