tpotter

google tic rashes pictures. Also, google bartinella rash.

How do you determine that you have survived the strep? Do you retest? If so, do you do just a throat swab, or are you doing the ASO/AntiDNAseB?

Thank you smartyjones for your information. I certainly am looking at every possible option. Right now, we seem to be doing much better (after having done IV abx all summer,) but unfortunately, we couldn't knock out all the infections, because everytime we would try to add an abx (IV), he would have an allergic reaction (throat closing, difficulty breathing, etc.) So, we were only able to get the clindomycin IV into him, which certainly helped, but didn't knock it all out as we had hoped. Now we are doing oral clindomycin and taking herbs instead of other abx (had what was probably a massive herx reaction, which landed him in the ER with chest pain and difficulty breathing. I pulled him off everything for a week, then started him back on VERY slowly...so far so good. Plus we found a large amount of black mold in our house that we had removed last month, and just replaced a 25 year old a/c on Monday, and installed a hepa filter.) I will give this approach a few more months (I'm rather scared about the beginning of school, as we all are), but if it doesn't work, then I will certainly consider homeopathy next. There's no doubt that PEX and IVIG helped, and that IV abx very much helped. Now we just have to play it step by step. Stephanie, thank you for sharing this information. That's what I love about this forum...we're all in it to help each other!

Actually, it's frequently Augmentin XR (1000 mg BID)... not just Augmentin) and Azithromax, is my understanding. Slight difference, but it may make a difference. I'm really glad you are getting this taken care of at home. How lucky for you.

It is possible that your son picked up something somewhere. It doesn't have to be strep once the autoimmune problems have started. Even a cold, allergies, or really anything can trigger it. Several years ago, we were told by Dr. K. to go back on full strength abx when there was an upsurge in symptoms (unfortunately, we were never able to decrease the abx, because my DSs would always get sick.) If your DS is on a prophelactic dose of abx, I would suggest upping the dose if possible, plus I ditto LLM and Kimballot about detoxing. If you continue to have problems after several IVIGs, consider the possibility that there are still other infections that you haven't found.

I agree...keep the email as short and sweet and to the point, and try to send it while she is in the office working. Also, do you think your pediatrician could try to call her for "direction?" Make sure he calls while she is in the office working (that's what I've been told by her office staff in the past), and lets the staff know that it's an emergency, and he needs to speak directly to her (preferably not a return call.) Dr. L. likes to know that there's someone "directing" things back home, so having the pediatrician call does help. She is very busy, and I think these suggestions will help you. But, she is truly excellent.

Wow. Thank you so much for sharing this. Has anyone else had experience with homeopathy?

Your pattern was our pattern more than once! And now we are treating for the same things. Dawn I have 2 kids who received multiple doses of IVIG. DS18 got tremendously better (even his social skills jumped from about 7 years to about 14 years, and now he is "learning" what he hadn't learned before. He's also not as sick, and so far it has held. He is also diagnosed with Lyme, but it doesn't seem to be affecting him the same way as DS15, and IVIG seems to be holding for now. DS15, on the other hand had the same problem as you and the other 2 moms above. Only, he started declining about 3 weeks after every IVIG (did it a total of 6 times.) Now being treated for Lyme, Bartonella, Babesia, Erlichiosis, and he was exposed to mycoP through me (only found out, because the doctor tested both DH and me, as well as the kids.) He was diagnosed clinically, because the blood tests came back negative (except erlich, which FINALLY came back positive after starting treatment. That being said, many PANDAS only kids (and there are those), still need more than 1 IVIG. Your child may need that, and I also agree that once a day amox is not enough for prophelactic.

That's such incredible news. Thank you for sharing it!!

Let us know how things go. I'm really glad you got the PEX.

We get our bentonite clay at Vitamin Shoppe, and use the Great Plain brand. We only use 1 t daily (although it says to take more), but we take it every day. I don't know if that's the recommended amount, but that's what we take. We have also been rotating with carbonized bamboo (Takesumi Supreme) that he got tested for with muscle testing...but we get that through our holistic chiropractor.) We also started trying to activated charcoal, because it's not so messy (they're in pills.) Our LLMD does not really talk about detoxing, but I do believe it's very important.) We try to space this at least 2 1/2 - 3 hours between abx, as it gets rid of EVERYTHING. Also, the pearls are available from Vitamin Shoppe. DH uses those, but the rest of us use other things that we get from our holistic chiropractor after muscle testing. We ALL take saccromyces boullardi (floristor withOUT lactose). We use the Jarrow formula, and take 2 each day...all our probiotics are taken away from abx. Also, this thread has REALLY helped us, as DS 15 started getting terrible reflux last week, along with a slew of other symptoms since starting him on 2 herbs (artemesia and candibactin). He was also on a lot of oils (coconut oil, omega, d3,) and was taking a lot of glutamine. I figured the neurologic and psychiatric symptoms he was getting was a huge herx, but never figured the gut issues were. But, when the reflux got so bad that he had to be rushed to the ER, because he couldn't breathe (might also have been air hunger,) local DAN! doctor and I decided to take him off almost everything. BTW, he did have allergic reaction to several abx while on PICC line over the summer. I just read my DS15 some of these posts, because I had the feeling that we needed to be doing the herbs. I really feel like they are the right thing, but I will give him a much smaller dose, because the neuropsych symptoms were intolerable (unable to sleep, and then started having his nightmares again, and finally hallucinations!) He needs to get better, but I think slowly might be the answer (our holistic chiropractor who gave us the stuff after doing muscle testing, believes in starting high and tapering off. That's not bad, but my DS is very hypersensitive, so for now, I go low, and gradually got up.) In the end, you have to decide what is best for your child. BTW, we are treating his terrible reflux that he got with nexxium, because it was so severe, and nothing else worked. But, thank you all so much for helping reinforce to my DS that what he had was a herx, so he's not so afraid to try it again.

I agree with checking for Lyme and other co-infections, too. I have 2 children with PANDAS...both present differently (one is more Autistic), and the other was more classic onset. He gets terrible pain in his back, chorea, tics, OCD, and has, several times suddenly had difficulty speaking (including stopping speaking.) Thank goodness it came back within about 2 hours, but it was terrifying. (the one who has Asperger's has been helped tremendously by IVIG...social skills jumped nearly 7 years after the 2nd dose.) DS15 though, would get positive results from IVIG for about 3 weeks at a time, then backslide until the next dose (we did it 6 times.) Immunologist agreed that there was probably some other infection we hadn't found. DS15 (the one with classic PANDAS onset, symptoms, etc.) definitely has PANDAS (did Cunningham test,) but more recently, we found out he also definitely has Lyme/co-infections, and I definitely wouldn't have believed it. I only tested, because we were at an impasse (PEX had fallen through, fighting insurance for IVIG,) and I felt like seeing an LLMD was something I COULD control. DH was the only one who tested positive on blood test (IgM was elevated), but DS18 and I both had several bands positive (he was symptomatic, with years of joint and muscle pain + he has PANDAS and Asperger's.) I definitely had mood changes similar to my children, and DS15 kept telling me I probably had the same thing (I did have a fully engorged tic on my head when I was a teenager for about 2 weeks,) + I have been fighting mycoP for 3 years...just diagnosed last year.) DS15 only had 1 band positive, and I still wasn't at all convinced that Lyme had anything to do with his, but we decided to start trying to treat (it's a clinical dx, and he did have what the doc thought were bartonella rashes...looks like stretch marks.) After some severe symptoms starting in May of this year, all of a sudden, it lit up like a Christmas tree...couldn't deny it anymore for DS15. IV abx made the stretch marks start fading dramatically, and one of the set of symptoms that caused us to use IV abx (increased liver enzymes, enlarged spleen and low WBC) are a group of symptoms of babesia, and he finally tested positive for erlichiosis. But, he still has elevated ASO! So, my point is, get everything tested if possible, but keep in mind that blood tests for Lyme are not always accurate, because bartonella actually "hide" the antibodies that would otherwise show up as positive. Only when you treat the bartonella, does it help. None of this means your child has Lyme or co-infections or anything but strep. But, I wouldn't ignore the fact that there may be more than one thing going on, particularly since she's had it for 2 years now, and the immune system is compromised. I also agree with PhillyPA to see the doctor in Sidney, and as a last resort, I would suggest getting an appointment with one of the docs here in the US.

My DS's tics got significantly worse after PEX for about 3 - 4 weeks, then gradually just about went away. They still come back occasionally, but nothing like that (had to go to the ER by ambulance 1X, because he couldn't breathe from the tics.) I'm glad you're back on. BTW...tried to PM you, but I think your mailbox is full.

We use glutamine, but be careful. DS18 is doing extremely well on it. DS15 ended up in the ER on Thursday a.m. (luckily DH hadn't left for work yet, when I got the call...I had to race home.) We don't know if it was from all the glutamine and/or the coconut oil and/or the herbal we had started him on (probably a combination of all the above), but he suddenly couldn't breathe, and was having chest pains. I googled all of them, and they were all at risk. Decided to pull him off all of the above. I'm not saying not to take it, just saying...start slowly with anything new, and build up (we started with to much at once, I believe + I suspect there may have been some herxing. Glutamine can cause reflux. BTW, if your DS is having stomach pain, I would definitely check for c-diff (especially being on all the abx), h-pylori and giardia. Our gastro did NOT recommend these, and DS18 ended up losing about 20 - 25 lbs (and he as thin to start with) before someone on the forum suggested I ask about it. He was positive for C-diff, and now we have to be super careful, because he's at high risk for it coming back (took 3 rounds of abx to get rid of it!)

Kara, My DS15 originally tested only 1 band positive for Lyme, but we decided to treat, given the fact that he had been sick for 8 years with PANDAS, and treatment (abx, PEX and IVIG) were not "holding." We started last October, and had pretty much given up, and then all ***** broke loose (for those who read my previous posts, you probably remember.) He developed enlarged spleen, elevated liver enzymes and low WBC, which at the time, we didn't know were symptoms of babesia. He also had, what we thought was the bartonella rash. His ASO was elevated, so we knew we were also dealing with strep again. And the darn oral abx just weren't working. We finally managed to get him on IV abx (clindomycin), and then his Igenex tests came back...positive for erlichiosis (he did have physical symptoms, too that correlate, but we just didn't know it was related.) My DS also has rages, OCD, tics...all the PANDAS stuff. So, I really don't think that erlichiosis specifically causes neuropsych symptoms. What I think is that you have other things going on that you just haven't identified yet (or have...but just haven't finished treating them, yet.) BTW, did you also check for mycoP, because that can cause rages, and it can also be a co-infection of Lyme.

I am planning to go to this. I got on their website, and asked them to send me more information. Apparently, details are not yet set. If anyone hears more about it, let's keep in posted.

I agree with LLM about the steroids. I not only have Lyme and co-infections, but I also have osteoporosis, and definitely should not be taking steroids. BUT, as my doctor said: when my asthma is bad enough, I can either choose to breathe or take a short term risk with my bones and Lyme. BTW, do you have any idea what is triggering the hives? I assume you've had allergy testing?. Could it be the stress from losing your mother? I know what it's like...my Dad passed away at the end of March, and my MIL passed away 4 days later (had to race out after my dad's funeral, because my MIL was dying.) The stress was unbelievable, and DS15 developed Parkinson's-like tremors (they have since gone away, so I think they were related.)

We also have had a lot of trouble decreasing the azith, especially in me. I had mycoP, and for 3 years before being diagnosed with it (thanks to Dr. B. who tested the whole family for strep and MycoP...my IgM was 1750), my asthma would get so bad I would finally take azith...no other abx ever worked. I finally managed to get extra doses around the house (I don't remember how...maybe through my kids, because I was fed up having to keep running back to the doc, who didn't know what was wrong with me.) I was diagnosed with MycoP August 2010! I have been unable to lower my dose of azith (250 mg twice a day), even though I am now being treated for Lyme and co-infections (my entire family turned out to have Lyme and co-infections, such as babesia, bartonella, erlichiosis, even though I never would have thought they had it. and I do believe it was all underlying the PANDAS.) In fact, my DS15 was such classic PANDAS onset at 8 years old, and he only had 1 band positive on WB, but once tx started, the symptoms started coming out en masse, and I can't ignore the clear clinical signs (plus erlichiosis ended up coming back positive on blood test finally) I have been seeing an LLMD, and am on different abx...have done doxy + azith (started having problems with the doxy after awhile). I've also done flaggyl + azith, tindamax + azith, and now mepron + azith. When I try to lower the azith, I get symptoms. But, the good thing is that my chronic, uncontrolled asthma (the uncontrolled part started when I believe I first got the mycoP...3 years ago) is much more under control. I have also started seeing a lung specialist (when they heard I had mycoP, they put me in with the "Senior" Lung Specialist, thank goodness. He has, unfortunately, found some possible scarring on my lungs...possibly from the long term mycoP. So, long story short. The fact that your DS has (or has had) MycoP, is probably why he only seems to respond to azith. My guess is that you haven't gotten rid of all the mycoP and/or the antibodies (which is what the IgG is measuring...means you've had it in the past.) If his IgG is still elevated, that may answer your question. This is my opinion that it may be this, but it makes so much sense, particularly since we know from the Columbia mouse study that it's the strep antibodies that cause the symptoms, not necessarily strep itself, and given my history with mycoP, and azith, I suspect it's the antibodies still around that's causing me to not be able to wean down from the azith. It is also possible there are other infections present...keep in mind that PANDAS is an auotimmune disorder, and the whole immune system is whacked out.

Thanks. Just needed to be sure.

OMG...that is fantastic! Good luck with it all. That sounds like a dream job. Keep us all informed (the beauty of the web!)

I have suddenly started having a terrible pain in one knee, but it is not the joint. It started a few days ago when I tried to stand up, and the tendons in the back of the knee (hamstrings) suddenly tightened up (like sudden spasticity or something), and I almost fell to the floor in pain, plus, I couldn't straighten my knee. The next day, I was still having that occasionally, then my whole knee cap started hurting (particularly one side). By yesterday, I was getting intermittent tightening of the tendons on the back and front of the knee (both upper and lower parts of the knee) and a pain going completely around the entire knee. Today it's not as bad (so far), but still painful. Addiitonally, my hands are getting numb, tingly and painful again. I have not switched medications in a while (currently taking azithromycin and mepron). My DS said he has had similar types of pain in his knee, and both my DS's are having pain in their legs, feet, etc. all of a sudden. I do know that DS15 was probably herxing today when we had to take him to the ER by ambulance, because he couldn't breathe this a.m. (I suspect herxing from a very high dose of articin and metagencs' candibactin (he had horrendous symptoms a few days ago, and I pulled him off both.) His DAN! doctor who I took him to this afternoon after d/c from the ER agreed. Anyway, does anyone know if the pain in the knee is herxing (never had it before) or a side effect I should be dealing with (I stop Mepron on Saturday for a week, per 3 weeks on/1 week off dosing.)

Wow...this is great, Emerson. Thank you for the invite, but I will probably just go straight there. I noticed they don't have details listed yet, and I have asked them to keep me informed as details come up. If you hear anything, please let me know. I don't know if I'll go to Temple or Round Rock...really depends on differences in airfare, but I do highly suspect I will attend (I can use it for continuing education credit, as well.)

Wow. Have a great time there. Any particular reason you're moving to France (job, love, etc.)

Please be careful with the dosage of artemesia. Granted, we were also doing candibactin, but please start slowly and work up. We started at a high dose, and had terrible side effects (rages, hallucinations, bad neuropathies, numbness, and even possible tachycardia.) I have stopped both. Just because these are herbs, doesn't mean they aren't potent. And, we were following the doctor's orders. I do think both herbs would have been good had we started very slowly, and gradually increased. Now, we have to backstep, and I hope we don't backslide in the process (we just finished a 2 month IV abx, which was very tiring, and I don't want to repeat it, if I can help it.)

Interesting. I'm going to follow this to see what others know about it.