tpotter

Sounds like my DS15 a year ago. It is so different now after a year of treatment with Dr. B. Best wishes - Also, sounds like my DS19 2 1/2 years ago, and very occasionally now when he's flaring (but it's actually not that bad.) In fact, it is so similar, I just read your post out loud to my DS16, who said: "yep, sounds like him." (DS19 even eats a bunch of potato chips, and these days, he's trying to get himself off of Monster and Mountain Dew, because I promised him that I would take him back for treatment if he stops filling himself full of toxins. Now, when he starts getting even remotely like that, I suck in my breath (it's usually everything I can do not to yell back), and say: "I know you're sick, and not feeling well. That's why you're getting so nasty. I can't leave you alone, because you have to get such and such done, and you'll really regret it by "not going to the dr" or "the poor dog will have to pay the price by not getting fed," etc. It usually works (wouldn't have 2 years ago.)

good luck. I really hope it works. If you read the white paper (and/or the website...can't remember which, if not both) she says: go low, go slow (she doesn't say don't do it at all.) If it's necessary, then it's necessary. I think what we have all found over the years is that each of our children are different (both my kids have PANS/Lyme, whatever you want to call it, and both present differently.) I've got my fingers crossed that you will get great relief.

We use methyl protect from xymogen (have to get it from a participating provider, such as a chiropractor.) It has B-2, B-6, Folate and B-12, but methylated. Chiropractor prescribed it for my children by doing muscle testing.

They should be, but some are bettter than others. I actually picked ours out of the yellow pages, but found a Chinese accupuncturist with 30 years experience.

Sending PM

I have waited 3 months to see how this has helped us. I am now ready to report. Keep in mind that we are also getting treating with abx cocktails from LLMD, the boys have had IVIG and PEX (1 PEX and 7 or so IVIGs in the past), and are also getting chiropractics every few weeks. Addtiionally, we are also seeing a holistic chiropractor who tests with applied kinesiology (muscle testing, basically) for nutritional supplements. In January, DS16 and I met some people who were swearing by accupuncture. So, I decided that we would try it out, since I have also been fighting mycoplasma pneumonia for 4 years. DS wanted me to try it first, so I did...for 3 weeks, before telling him that I thought he should definitely try it, too. Within 2 weeks, I felt like there was a lump that was separating from my chest wall (that's the best I can describe it), and disappating (I know the spelling's off) throughout my body. Since then, my cough is completely gone, I am breathing normally, and I honestly feel 100% (with my lungs.) DS started about 5 weeks ago, and although he says he doesn't feel any better, it appears to me as if he's not getting as sick or as sick as long since starting. I may give it a break next week, but the doc's been working extremely hard on my DS's immune system. It's kind of a hard decision, because I think I'm done for now with him, and DS isn't crazy about going, but I don't want to lose the ground we've gained. So, that's my update.

I think that there's more of a chance that the operation probably caused release of toxins, and that caused the flareup. Are you seeing a PANDAS specialist? Also, I didn't know about the nitrous oxide, either. That is very interesting. And, now that I know that DS19 has the MTHFR gene mutation, I'll have to make sure he knows, as well. It would have been nice to know that prior to last month when he had his wisdom teeth removed! Luckily, he didn't have a huge flare.

I'm asking for a friend. Please PM me with names and contact info, and personal opinion. Thanks

What would cause it? 1) brain fog 2) internal restlessness 3) Difficulty with math and writing 4) anxiety 5) silliness/goofiness (btw...is he taking anything for yeast, as it will also cause these symptoms) 6) in other words: PANS Have you discusssed his medical issues, and does he have an IEP? If not, I would suggest you set up a meeting, and try to get one. If so, I would convene an IEP meeting for him, and make modifications. He may also be herxing, and if so, this may indicate that he also has lyme/co-infections.

Candibactin is also really helping DS19 (he can not longer take abx, because of c-diff.) But, we also started him low (1 pill twice a day.) On the flip side, we gave it to DS16 about 1/2 a year ago, and our holistic chiropractor had told us to take 2 pills 3 X per day. Wow. did he have such a massive herx, he had to go to the ER. Now, he's afraid to even try again. My point is, "go low, and go slow" (even with herbs.) But, Candibactin is supposed to be good for bartonella, and that's part of what we're fighting. Again, give the peanut/peanutbutter a try if it's possible. It's honestly what saved us for 4 years before the PANDAS dx, and 7 years before Lyme was diagnosed. If it works, I'd give your DS peanut butter throughout the day (mine hated it, so it was only possible to do when he was having a rage attack.

Several thoughts, because we have been there, and still occasionally go that route (but now, DS can run to his room, although we see his face turning bright red!) 1) If she isn't allergic to peanuts, give her either 1 -2 T of peanutbutter or 1 -2 small handfuls of peanuts. We found this purely by chance, and it worked every single time, even though DS HATES peanuts (so it's not a placebo effect, because I used to have to threaten him to take them.) He was calm within minutes (hopefully it will work for you, too.) My theory (and Dr. K agreed) that it may be because peanuts are full of tryptophan and high in fat, so it goes straight to the brain! 2). If you haven't tried 5-Htp, try it (start off with only 1 -2 pills 2X per day.) We prefer the time release. PM me if you want a company name. 3) I would recommend PEX over IVIG when things are that bad. We've done both. PEX stops it fast. Ask to followup with IVIG, though, because personally, I believe that a person needs both (get the toxins out, then give the body the ability to fight it.) I don't know who you see, but PM me if you want more info. 4) Fix the gut (find a naturopathy, holistic chiropractor, etc.) BTW, we are now using accupuncture, too. 5) SEARCH FOR INFECTIONS! I suspect there may be underlying infections going on right now. Make sure you check for mycoplasma pneumonia, because it causes rages. Also, I presume you did, but I'll mention it again...did you definitely rule out bartonella...it causes rages, too. Turns out DS tested very, very negative for lyme and co-infections, but he actually had/has the stretch marks. I am seriously praying for you. It's a horrible place to be (DS broke my arm one time. He could only stop when I cried....very weird.)

Show him/her the NIMH website: "go low, and go slow."

They should have tested him for strep, but look at the LeRoy teens...positive for strep, mycoplasma pneumonia and 2 CDC positive for Lyme (and of course, we all know they, too were diagnosed with conversion disorder.) Heck, my guy was also diagnosed with conversion disorder in the hospital, with positive rapid strep, scarlet fever, 104 degree fever, chorea, and all the neuropsych symptoms. And, I had already told them that DS was diagnosed with PANDAS (I was quickly informed that "PANDAS is voodoo!") Basically, there are doctors who, I truly have to say, just don't care, and/or are so egotistical, that they can't see their heads from their *.X***! Now that I got that off my chest, I totally agree with Colleen. You need to put the "how could it happen?" on the back burner (you can always revisit it later if necessary, but truly pick your battles.) 5 days is not enough abx for ARF, and additional tx may be necessary, too. I would find a good rheumatologist or doctor in general who SPECIALIZES IN RHEUMATIC FEVER! Make sure you check his heart. Make sure it truly is ARF (could be PANS). Oh, and ARF does not necessarily affect the heart. Basically, it affects the joints and muscles, and can also cause rheumatic heart disease (so there is hope that you caught it in time.) It can also cause sydenham's chorea. If it turn out that DS does not have ARF (which my DS turned out not to have...instead he has PANDAS, PITANDS, and later we found out Lyme, too), I would highly recommend that you call the NIMH, and see if he qualifies for the IVIG study (in fact, I would probably call them today...he may qualify anyway.) They will do all the testing, pay all your expenses, and get treatment for free if he qualifies! You can check it out here: http://www.clinicaltrials.gov/ct2/show/NCT01281969?term=Pediatric+Autoimmune+Neuropsychiatric+Disorders+Associated+with+Streptococcal+Infections+%28PANDAS%29+Research+Study+for+Children&rank=1 And, it helps all of us, as well, because the study can be finished up, and we will all benefit from being able to get IVIG paid for by insurance, if needed for our own kids.

How about keeping him on 600mg of Ibuprofen 3x daily for the next week, and see if it helps? I would recommend only 400 mg on a regular basis or you could really mess with his stomach (we are dealing with gut issues, now.), and make sure he takes it with food. You don't want to create yet another problem, and we have found (with our older sons, too), that 400 mg on a regular basis should be enough. Additionally, I found (way before I ever found this forum, and by pure lucky chance) that 1 - 2 T of peanutbutter (we use sugar free) or 1 - 3 small handfuls of peanuts will stop the rage attacks in their tracks. I hypothesized (after I found out) that it was probably due to the fact that pb is super high in tryptophan, and is also full of fat, so it goes straight to the brain. Dr. K. agreed with my hypothesis when I told him. BTW, it couldn't have been a placebo effect, because DS HATES peanuts, and I used to have to threaten him with taking away something really important or allowance or something. It typically worked within 2 - 5 minutes!

I will add to that. As LLM said, be prepared to travel, but keep in mind that some of the LLMD's will do followup visits by telephone. That's what I do, and it is way less time consuming, and costs considerably less. If you want a recommendation, you can PM me, but we go to MD. FYI, it is NOT cheap, and be prepared for this to take a long time to treat. I also have mycoplasma pneum, and it is my only real symptom of LD. My entire family has LD or co-infections, and DH is the only one who is actually tested CDC positive (but we are certain with everyone else for multiple reasons.) We have been getting treated for 1 1/2 years now, and I am just now starting to feel better. Also, BTW, many of us on the forum have also gone with alternative medicine in addition to an LLMD (we currently are getting treating with antibiotic cocktails from the LLMD, and DS16 and I see a chiropractor regularly, take supplements determined by using muscle testing, and for the past 2 months, we have also been seeing an accupuncturist. For us, I feel like it has all helped.

Hmmm...the article says that zinc might DECREASE HDL (which is the good cholesterol). We didn't get her zinc levels checked. She's not on a zinc supplement. We haven't gotten back the breakdown of HDL/LDL yet. I can post when they are in. Although zinc has many benefits, zinc supplementation may reduce good cholesterol known as HDL in your body. However, further research is necessary. Read more: http://www.livestrong.com/article/530227-zinc-hdl/#ixzz1qu72oCtE YEs, I think the anxiety might be a factor! Is she taking omega 3 fish oil? It lowers the bad cholesterol, and actually is the main ingredient in one of the statins (don't know which one.) We take them, and I know that both DS and my cholesterol lowered as a result.

Relax...deep breathe...get that glass of wine. Now, I think this can wait until Monday, but I do agree that you should call your LLMD. Now...another sip of that wine

Now, at least you know it is infection triggered!!!! I am sooooo happy for you. BTW, I was just reading your post out loud, and my 19 yo said: "I do that...it will go back and forth" (and then he laughed.)

' I agree with the others. These are EXACTLY the same symptoms my DS (now 16) has had off and on throughout the years. The nausea always went away with the correct abx (ASO titers always went up with onset of nausea, and when we finally treated it properly, it would go away. Now, when nausea starts to return, we suspect strep.) The other symptoms sound like a mix of strep, possibly mycoplasma pneumonia (can cause the rages, as can bartonella), possibly erlichiosis (neck pain), and on and on. BTW, mycoP, baronella, erlichiosis are all co-infections of lyme. I am telling you this, because it took us about 6 years to figure out that it wasn't only strep in our case, and my DS has had exactly the same set of symptoms, and even more. It's important to find out what other infections may be at play, because until you get rid of all the infections, (or at least under control), the IVIG/PEX route may help, but the symptoms will keep coming back every few weeks.) Keep in mind that this is an autoimmune condition, so the person is susceptible to multiple infections. PM me if you want additional information about what to look for, etc.

We use epsom salt footbaths, and also use bentonite clay (1 t in a glass of water, as we do it pretty often.)

We've used 5-htp for several years (Dr. K. recommended), and it works well for us. We are now using 5 htp from xymogen (have to get it through a provider). Gives extended release, and appears to be keeping them more calm throughout the day.

He said it wasn't bigger or smaller, but I do fear that it is lyme (he has so many co-infections, I wouldn't be surprised.) He's seeing the eye dr this week, and I suspect he's going to refer him to a specialist.

No, you didn't misspeak. I misread. I went back and edited my post. Mea Culpa. I forgot that bartonella was on your radar. Given the cat and your son's rages, I'd keep it on the radar. If it's a factor, one antibiotic may not be sufficient and prednisone would not be advised. Like DCmom suggests, a month of abx therapy alone may have given you more information before confusing the issue with prednisone. But different doctors have different protocols. If you're told to discontinue the prednisone, I would not be disheartened. It doesn't rule out Pandas. In most chronic illnesses, tests offer clues more than they offer proof. So I add a third item to my above list - bartonella. Here's an article you might find helpful. http://www.benbrew.com/lb/lb.html Read it carefully - the author (who is not a doctor) sometimes jumps from talking about lyme (abbreviated Bb for Borrelia burgdorferi, aka lyme disease) and talking about bartonella. Often in the same paragraph. One minute he's talking about Bb and the next sentence he says something about bartonella. So you may need to read it a second time, paying attention to which infection he's talking about in that moment. It's technically accurate but confusing. Parts are very informative, others not so much. But it's one of the more comprehensive articles I've come across. Pay particular attention to the section of how it effects relationships. I found it to be very true (my DS had a bartonella dx and was treated with azith+bactrim for 9 months). My DS16 also has bartonella, and is STILL being treated (but can't take azith, flaggyl or doxy, because of allergies, and pancreatitis , so it's been very hard to get under control. But, bartonella will certainly cause rages. Also, you might want to make sure you test for mycoplasma pneumona, because it will also cause rages, and it can be a co-infection of lyme. Actually, since you're seeing Dr. B, he's most likely had your whole family test for that. It was because of his testing DH and me for mycoP and strep, that I finally found out why my asthma was completely out of control for 3 years (mycoP!) You're in good hands with Dr. B. I was not certain that I wanted to go the route of IVIG, especially once I found out that both my boys also had lyme (figured I get the infection taken care of first.) But, insurance finally came through, and I wasn't going to lose something I had fought so hard to get, so I did it WHILE the boys were also being treated by an LLMD. I am very glad I did. It made a world of difference, and the edge has now been taken off of them. And, as you know, I also have older children who have suffered for a very long time. I would definitely listen to what Dr. B. suggests, decide if it sounds/feels right to you, and then do what you think is the right way to go.

Self-centered in laws... yes. Both mother in law (MIL) and one of my sister in laws. Have to tip toe around things, which is really a sign of a controlling person. My husband has picked up some of their narcissistic traits, although the food licking, I have been able to competly halt, and my son and I are very vocal about it at home, so.... no sharing of utensils, cups, stuff put in mouth or anything in our house, and that includes me and my son. I don't want him getting anything he doesn't need to pick up. So...imagine how it feels to have my mother in law and my sister in law, do this thing, which is their thing, where they lick food, eat food, and then use the same utensil to scoop your own food, or they take a bite or drink something, and then pass it on to you. I just find it all so bizarre, and I hate it. My mother in law has been known in the past to serve food to people, and whatever we don't finish, she would scoop up into a tuperware thing, and then refrigerate it, and tell my husband and I that she was going to save it for her other son who would come over the next day. I remember making a mental note not to eat what she cooked and served, because it was likely a leftover from someone else's plate. This is normal fare. Her daughters and sons find it all normal. My dh has adjusted because I find it unacceptable, but really, he grew up with that. I guess bc there were 6 kids, and she got used to doing that to save. But, the kids are all grown up and so are the grandkids, and she still does it. It doesn't matter whether someone gives her stuff, or she makes it, she will save it and then redistribute it. So, that's why I brought food over, but she only wanted me to put on the table the food that I had already cooked, and not allow me to cook the organic chicken, even though ds9 said that he was looking forward to eating the chicken. I guess m-i-l has narcissistic personality disorder, where only her needs are paramount. Don't know, but I know it bothers me so much. Plus, I know for a fact that one of her daughters does the same kind of thing, and it is viewed as normal. We went to my sister in law's house for some party in early Feb, bc she was the one who threw my ds's ninth family day birthday party. (He had a huge one with kids the following day at an indoor playground...and this was the family one, which I did't have last year with the family). Anyways...the sister in law, once again, scooped someone up, put it in her mouth, ate it, and then was going to scoop with the same spoon to feed ds9, and this time, she asked me if I preferred if she got another spoon, instead of using that one. I don't know why this is such an odd thing, but they find it odd. Yes.. I don't want to go to MIL's place. I will avoid anything to do with eating. I will ask her point blank if she is sick, because I don't want my son to get sick, because it is not right to invite someone over when you are sick, and I will remind her that she feels the same way. She is very intense and very controlling, and sometimes she is a fun kind of person. Sort of like...you don't know what to expect out of her. Anyways...just wanted to vent, because this is the norm in my dh's family, and I am totally seen as the weirdo for not believing that everyone should share food from the same spoon or drink the leftover stuff. I know teenagers do that, but you know what, I am not a teenager any more. Plus, I am a mother of a son who has changes when he is sick, particularly when he ends up with strep. It bothers me so much. Just wanted someone to validate. Feel pretty alone in all of this. This forum has been so helpful and so supportive. I get ideas on what to do about my ds9's behaviour, and see that others have witnessed the same from their children. Thank you so much! Just stick by what you're doing. She's never going to understand. I don't suppose you could sometimes pass on going to visit? I finally got to that point with my MIL/SIL (SIL was the worst, and now that MIL has passed away, I absolutely refuse to do anything around SIL...she had made some terribly wild accusations against me, and recently I confronted her in front of everyone, and then told her never to contact me or my children again...I meant it.) So, I totally get where you're coming from. BTW, I feel so much calmer now that I don't have to put up with the nonsense.

PM'd you. BTW, both my ds's have also had the "rages" (that was my DS16's first symptom. Horrible, horrible, horrible. Walls have been broken, furniture thrown, and even my arm was broken one time. No, they don't know how to stop it, and it happens instantly. It's caused by inflammation in the basal ganglia (encephalopathy and/or encephalitis.) As mentioned before, try using ibuprofin (it decreases inflammation, and crosses the blood brain barrier. Also, I would use a word of caution with benedryl. My DS19 used to have opposite reactions to benedryl and some medications...it would make him very hyper (that's not the case anymore, since treating with IVIG.) But, again, I would also suggest you get hold of the NIH on Monday first thing in the morning. Apparently the process is very rapid, and that would take a great deal of stress off your whole family. Good luck