tpotter

My doctor said anything that absorbs toxins, like activated charcoal or bentonite clay. Good luck Ibuprofin

DS 19 (today is his b-day was textbook case of bipolar. He was also textbook case of adhd before that, and textbook case of asperger's. The only reason I'm telling you this is because all his symptoms dramatically decreased when we started abx and/or PEX and/or IVIG. ABX stopped the suicidal ideations and sudden onset rages (literally within hours.) And this happened more than once. When he got PEX, one of his very serious OCD issues (fire setting) completely went away, and he became happy, and very, very nice (didn't last forever, unfortunately.) When he started getting IVIG, he got very, very nice again, and on the 2nd IVIG, his social skills jumped from about 7 years old to about 13/14 years old...overnight. I attributed the rest to really needing to learn the skills of older kids, and that is happening. Unfortunately, these have not been cures, but he is certainly under control. Oh, btw, the adhd meds made him violent and out of control, and the bipolar meds did absolutely nothing for him. He was diagnosed at age 15, but we have since found evidence that dates it back to early childhood (and possibly since birth, but can't substantiate.) We used abx for several years, but have to be very careful with what we use now, because he developed c-diff several times. Yes, it's a problem, but honestly, the psychotropic meds for DS were far worse (and didn't help, anyway.) DS just finished his first semester of college with straight A's (well, some A-) This couldn't have happened if we hadn't stumbled on the dx of PANDAS and Lyme. PM me if you want to discuss more.

Us (both boys AND ME!): 1. Same (frequent & high at young age, now now) 2. Immune system never checked when younger...never appeared to be a need. 3. Specific immune deficiency (strep pneumo). I just found out that I also have extremely low strep pneumo titers....& I had the pneum. vaccine last year. I guess that's where they got it from.)

How many weeks would you have to treat this way, instead of using oral abx. Also, keep in mind that although IV abx can be really powerful stuff, we also ended up with very serious reactions to 2 abx we had not had reactions to in the past (flaggyl and azith.) So, now, he can't take either one again, and we had to d/c the IV (we did get good results from the IV cleocin, but I was afraid to try anything else.)

If you are willing to go to either PA or NYC, I know of neuorpychs in both places who I was quite happy with. PM me if you want the names, and contact information (NYC was at Columbia Presby), and PA is near Philly, and is in private practice. PA guy knows at least a bit about PANDAS, because of me. I highly suspect the one in NYC would "get it", too, although she evaluated DS before we knew he had PANDAS (but she hit the nail on the head about his academic issues.)

DS is on both at this time, along with Rifampin and Tindamax (latter 2 are pulsed.) Nothing major, except feeling better observed here.

Very common. DS (now 19) has been diagnosed with Asperger's for many years. Following the 2nd IVIG, his social skills jumped 7 years overnight. That being said, you may also want to see about ruling out seizures (maybe see Dr. L. for that). Temporal lobe seizures can also cause the kind of sexual issues you are talking about. Since it is significant, and he is also diagnosed with PANDAS (and most docs don't understand PANDAS,) I would see a pediatric neurologist who understand seizures and PANDAS (that's why I specifically suggested Dr. L.)

Beautiful! DS16 just said: "We are the 1%....Who Know about it!" Thank you for putting this together.

Thank you norcalmom for the wonderful explanation. My DS cannot seem to get better, despite multiple IVIG's. We are now aggressively fighting Bartonella, because he has literally every symptom in the book, PLUS the rash that just won't completely go away. BUT, the last time we had him tested (a few weeks ago), his mycoP IGG was elevated again...not has high as your's, but definitely elevated. I asked if that could be contributing to it, but keep getting the response that no...just that his body fought it (I had mycoP for about 3 years...undiagnosed, despite having all the symptoms.) But, it doesn't make sense that it's not contributing to the problem. Unfortunately, though, DS is now allergic to azith, biaxin, doxy, and flaggyl, making it extremely difficult to treat mycop and bartonella.

At the TX conference, several of the docs said that it is an autoimmune reaction that causes the symptoms, not the bacteria itself. Basically, an abnormal response is created to the strep (or other infections if it is another infection that is triggering everything), and the antibodies attack the basal ganglia instead of the antigen. This autoimmune reaction appears to occur with any and all infections, colds, viruses, flu, etc. once the initial reaction has occurred (the body's memory cells remember the basal ganglia as "the bad guy.")

Yes, I plan to go if at all possible. But for me its about a 20 minute drive. Please let us know what they say.

I agree that the AAP had egg on its face saying the psych meds are better for our kids than treating with abx. But at the same time, I also understand their concern that parents look TOO hard for a relatively "easy" solution when their child may not have PANS, and may actually have stratight up OCD or some other issue. It's a philisophical discussion I've had with my VERY PANS friendly pediatrician often - and I don't think it's an easy one - how many PANS treatments do you try and see no improvement before you have to ask if its really what you're dealing with. Unfortunately - like my pediatrician is apt to say - without more research on the proper treatment protocols - it's an impossible question to answer. So while I still think the AAP looked pretty moronic with their stance - I at least can understand somewhat their underlying concern. I can also see their underlying concern, but unfortunately most pediatricians are not PANDAS-friendly, and how long do children need to suffer before someone is finally willing to at least try a 10 day dose of abx, and see what happens. Unfortunately, my family, like so many others got caught in the AAP's web to the point that it took 4 years to dx what, honestly, should not have, given the fact that I told dr after dr that it was sudden onset, following a massive sinus infection. I even asked several times about PANDAS, and was told there was no way. I don't think that anyone is questioning being able to accept that it's not PANDAS in the end, but rather the whole thought process of let's go straight to psychotropic meds. Also, when does one say that that psychotropic meds aren't working, and look for another answer (that was the case with my older son, who's "sudden" was at least years before we recognized it, and may actually have been born with it.) This was a child who had constant strep throat, stomach problems, and became violent on psychotropic meds (but their solution was to increase the dose, anyway!) Then again, why shouldn't we first look for an easy solution? Why do we always need to make such a huge deal out of this. Dr. Swedo said that children treated early and aggressively tend to get better. This is one time when it's critical that we "take the chance" on being aggressive. Also, the AAP said that they should only treat when there are obvious signs of strep throat! Strep is found all over the body, and it's not always so obvious. What really disturbs me more than anything is that there are plenty of children and adults who are living with horrible demons, some put away in institutions, who simply needed/need some antibiotics. I know I'm preaching to the choir, but when will the AAP get off their high horse, and realize that they are going completely against "dr., first do no harm!"

Personally, I thought the article was exceptional, and responded to the author about that. I think it is more important to keep it simple, but clear, like she did. We all know so much more than non-PANS (or more clearly: "non-PANS diagnosed" people), and as such I think we look too deeply into it. I feel like her purpose was to get the information out so that people might recognize themselves or their children, and followup to get more information. I also believe that the AAP looked completely idiotic in their response, when then said that they don't want parents thinking that it's ok to try to stop the OCD with abx! And, honestly, this author is the first to expose just how idiotic the AAP actually is.

That's great. I'm really interested in how this plays out. Sounds promising.

Another pill we've tried is 5-htp. Works well for us. Plus, I found by chance that a T of peanut butter or a small handful of peanuts stopped rages in DS within minutes! I found out about 1year later that it's full of tryptophan + knowing that it's also full of fat, which can go straight to the brain...made all the sense in the world. Even Dr. K. said that it made a lot of sense. So, if he's not allergic to peanuts...try having him eat peanuts and/or peanut butter regularly. It might work.

Just a thought...what if you were to tell them that she's allergic to amox in the future (if it ever happens again.) They won't argue with "allergies," and it's probably a whole lot easier than explaining in vain about ineffective abx. Again...just a thought.

Sorry...PM was full. I've PM'd you.

It is a 'double-edged sword' - you want to find out what is wrong but the more you find out the more complicated healing gets. So know where you are coming from. If it is any consulation, the MARCons treatment was much shorter than any of the other treatments my son is in the middle of, and seemed to bring him out of the fatigue he was experiencing. Insurance even paid for the BEG spray! Best wishes and keep posting so we can follow your progress. //By the way, I found old stool test results given by another doctor before we started on the lyme journey that had staph/strep in it but the doctor said not to worry about it. My son, as far as we know, has never had a strep throat. Which is why I keep trying to tell people that you don't have to have had a strep throat (or at least been aware of it.) Strep can be anywhere in the body, and other infections can trigger PANS as well.

I am so sorry to hear about how difficult this has been. I would like to make several suggestions: 1) Just because the blood work is negative, this does not mean that he definitely does not have lyme or co-infections (my DS's blood work was negative, but he clearly has bartonella, finally came back positive for erlichiosis after almost 1/2 a year of treatment, and was clearly exposed to mycoP.) So, seeing a LLMD may prove beneficial. PM me if you want names. 2) Some people are finding relief with homeopathy and ART. I don't know great details about either one, but different things work for different people, and I wouldn't put any of them down. I am going to keep your son in my prayers. I feel so badly for him.

My ped dr seems to be convinced that the IgG levels only indicate a past infection and does not want to change his abx. This cough has been the one single constant throughout this entire 3 1/2 year experience that we have been searching for answers to find out what happened to our son! I truly hope Dr. B will look at things differently, but we have to wait until Feb to see him. Thanks for your help and I would love to hear more about your daughter and how it affected her (I'm new and just learning how to send messages, don't know how to pm someone first yet ) I would recommend that you see a LLMD (PM me if you want suggestions.) Here's why. MycoP can be a co-infection of Lyme, and many people are finding that they and their children, do in fact, have lyme and other co-infecitons in addition to strep (we are one of those families...I never would have believed it, but clinical signs were very, very positive.) Also, LLMD's are very used to mixing abx cocktails, and honestly that's what you are needing. I had mycoP for probably 3 years...I was very symptomatic, and not one dr. tested me for it, until Dr. B. tested the whole family as standard practice to see if that's what was causing the kids to be sick (in addition to known strep.) My IgM was out of control, as was my IgG. My DS's IgM was borderline, and IgG was extremely high. My children's IgG was quite high, and more recently, DS16 has gone up again (I need to call LLMD, because we are clearly fighting multiple infections...strep super high, too!) Again, even if this is not Lyme (and please, people...don't get on my case about the Lyme issue), I have found that LLMD's really do have the best idea how to treat something as tough as MycoP. We have now been treating mine for over 1year, and it took about 3/4 of a year for me to finally stop coughing. I am also seeing a Lung Specialist, who has told me that I appear to have some permanent lung damage from it. Even he is deferring to the LLMD, as he was surprised that we have been able to get the amount of abx over the amount of time needed. And, as Bat-Sheva said, IgG does not only mean past infection. Even the lab report says that, if they would take the time to read it. The lab report says it "frequently" indicates past infection. Thank you so much for all of the great information...crazy question, but what is a LLMD? A lyme specialist? His lyme came up non reactive on all bands, labs were done at Quest lab, not Igenex, but wouldn't something show up? BTW...I looked at the lab report and it states "a positive result indicates that the patient has antibody to mycoplasma. It does not differentiate between active or past infection. The clinical diagnosis must be interpreted with the clinical signs and symptoms of the patient." Am I crazy, or does that mean if my son still has a chronic cough and his IgG came back HIGH, he could still have an active infection and that could be causing his pandas/pitand symptoms??? Meanwhile he is on 4,000mg of augmentin/day until we see Dr. B in Feb, which won't treat the myco p and if that is what is causing his symptoms, then isn't he taking the augmentin for several months for no reason? Yes, an LLMD is a "Lyme Literate MD." Your son may not have anything more than MycoP, but the reason I would still see an LLMD is because they know how to really treat, and aren't afraid to go for the abx cocktails that other docs are afraid to do (or honestly, don't have the experience to do.) Then again, Lyme is also a clinical dx, so the doc can also treat it as he sees it. Case in point...DS16 had only 1 band positive (I realize you're not seeing any positive bands,) but even on Igenex, his Lyme, Bartonella and Babesia were all negative. Erlichiosis finally came back barely positive...after months of tx, and sudden increase in some symptoms. BUT, my DS clearly has Bartonella (even though all blood work was negative,) because he has the stretch marks. We weren't certain until he was suddenly put on IV clindomycin last May for a horrendous infection, and the stretch marks got dramatically lighter. The stretch marks are definitive proof of Bartonella. So, too is other lyme and co-infection testing, so that's why you need someone who knows what to look for. And, even if the specialist says no lyme, there's still the mycoP that LLMD's know how to treat. Dr. B. diagnosed my mycoP, and started me on Azith, but he was not comfortable treating it for more than 1 month. That's one of the reasons we found the LLMD. It was only after that that we realized there was lyme and co-infections in my entire familly (DH actually tested positive on the Quest test, he has RA that wasn't getting better, and he's the one who likes to deny the hardest that he has it...go figure!) Now, as far as the medication you are dealing with...I would ask your doctor to change medications to azithromycin or biaxin, as these are the 2 that are primarily used with MycoP. The fact that he sounds symptomatic...you don't want this to go on any longer than necessary. Remember, I am now dealing with possible permanent lung damage from all the years mine went untreated. And, yes, MycoP could be the cause of the PANDAS/PITAND (PANS.)

My ped dr seems to be convinced that the IgG levels only indicate a past infection and does not want to change his abx. This cough has been the one single constant throughout this entire 3 1/2 year experience that we have been searching for answers to find out what happened to our son! I truly hope Dr. B will look at things differently, but we have to wait until Feb to see him. Thanks for your help and I would love to hear more about your daughter and how it affected her (I'm new and just learning how to send messages, don't know how to pm someone first yet ) I would recommend that you see a LLMD (PM me if you want suggestions.) Here's why. MycoP can be a co-infection of Lyme, and many people are finding that they and their children, do in fact, have lyme and other co-infecitons in addition to strep (we are one of those families...I never would have believed it, but clinical signs were very, very positive.) Also, LLMD's are very used to mixing abx cocktails, and honestly that's what you are needing. I had mycoP for probably 3 years...I was very symptomatic, and not one dr. tested me for it, until Dr. B. tested the whole family as standard practice to see if that's what was causing the kids to be sick (in addition to known strep.) My IgM was out of control, as was my IgG. My DS's IgM was borderline, and IgG was extremely high. My children's IgG was quite high, and more recently, DS16 has gone up again (I need to call LLMD, because we are clearly fighting multiple infections...strep super high, too!) Again, even if this is not Lyme (and please, people...don't get on my case about the Lyme issue), I have found that LLMD's really do have the best idea how to treat something as tough as MycoP. We have now been treating mine for over 1year, and it took about 3/4 of a year for me to finally stop coughing. I am also seeing a Lung Specialist, who has told me that I appear to have some permanent lung damage from it. Even he is deferring to the LLMD, as he was surprised that we have been able to get the amount of abx over the amount of time needed. And, as Bat-Sheva said, IgG does not only mean past infection. Even the lab report says that, if they would take the time to read it. The lab report says it "frequently" indicates past infection.

It's actually not exactly the same article. They took some of the same things, but added some, including a quote from Maddy Hornig. But, both are exceptional, and I'm thrilled that it's getting out all over the world!

That is so wonderful. I am really happy that it's going so well.