momcap

DS8 (PANDAS & lyme) had his tonsillectomy in August. He had emergence delirium while coming to from the anesthetic. He ripped out his I.V., screamed for 45 mins (not so great for a throat that's just had surgery!), and was totally inconsolable. I was terrified we had stirred up the bacteria and made things worse. Way worse! Recovery was rough for 2 weeks. He got a fever, refused to eat or drink, and was 100% miserable. We threatened to re-admit him to the hospital if he didn't take some pain meds and at least drink. It was brutal for a few weeks. But when he was healed enough to swallow we started lyme treatment (combo antibiotics and supplements). It's either the tonsillectomy or lyme treatment, or combination of the two, that has made a HUGE difference. ASO is finally falling after being stuck in the 500s for years. He is recovering to the degree of not even being the same kid anymore. Just before Christmas break his principal said to me the difference she sees in him is "NIGHT AND DAY!". I don't regret doing the tonsillectomy, and believe it is a huge factor in his ongoing recovery. But I sure did have my doubts in the weeks right after the surgery! I hope your son gets past those rough recovery weeks quickly and you start to see the amazing healing we are seeing! It sounds like you are doing it right - antibiotics before and after. Just like you said, he's been through a major physical and emotional stress - and that needs time to heal too. Hang in there, and let us know how he's doing!

We really saw DS's brain "turn back on" when we started Juice Plus. It's pricey, but it's doing something really good for him, so we are continuing on it. He takes 1 red and 1 green every day. I would eventually like to do further testing on him for vitamin and mineral deficiencies. But for now this works.

My DS8 was diagnosed with ADHD, selective mutism, separation anxiety, social anxiety, OCD, mood disorder-NOS (was attending a juvenile bipolar clinic), generalized anxiety disorder, and at age 4-5 was PDD-NOS. We found out about PANDAS 1.5 years ago. We have since found out he has lyme and bartonella in addition to PANDAS. We're 5 months into lyme treatment and he doesn't meet the criteria for ANY of his previous diagnoses anymore. Things aren't perfect, but they are literally night-and-day different from a year ago. His psychiatrist discharged him last month!!! We had previously tried psych meds and EMpower+ with little success. Antibiotics are changing his life. Please PM me if you want to chat more!

I was just thinking, it sounds odd to take 4 nystatin at bedtime. Our LLMD has us take it 3 times throughout the day, and even told us not to double-up if we miss one. I'm wondering what the thinking is on taking it all at once? Just curious.

There's a bug going around here (Southern Ontario), that is exactly like that. Stomach pain and no appetite, followed by diarrhea. When my first kiddo got it last week I thought it was from the antibiotics. LLMD had us take him off for a week and up detox and yeast meds. He was getting better, so I figured that was it. Now PANDAS DS has the exact same thing, and I found out that half his class is out with the same thing. So it's definitely something viral. Maybe the same bug is going around your area?

DS has the stomach bug right now, as does half his class. It DID trigger a very short and severe exacerbation. But he has lyme, PANDAS, and bartonella. So maybe it's the lyme/bart? IDK. He's 5 months into lyme treatment and his germaphobia & OCD were almost completely gone. Tuesday he woke up extremely germaphobic, seemingly out of the blue. He couldn't touch the toilet but was constipated (not a common problem for him), and went into OCD hysterics in the bathroom, even screaming that he just wanted to die. After 20 mins of shrieking he lost his voice and I finally got him into a hot bath to calm his nerves and relax his bowels. By the time the bath was done he couldn't walk - joint pains in his ankle, toe and arch on one foot, and a stinging sensation in the heel of his other foot. He told me his brain feels weird "like when I get strep". Hmmmmm.... So it took 300 mg of motrin and 3 hours later before he could even function, and I thought, "What was THAT?!". The next day (Wednesday) he had the stomach flu and a low grade fever, and the severe germaphobia continued. (Won't eat anything anyone has touched. Doesn't want a particular person to wash the dishes, or he won't be able to use them ever again. Etc.) Today he's mostly better, mostly pleasant, and the germaphobia is gone. This was his typical pattern over the past 5 years - wild flare up of behaviours and pain, followed by illness. But he never went through a flare in 3 days before. Usually it was a minimum 2 week flare, and sometimes went on for months. He does get fevers, and very high ones too. He's often 104-105, and he's been up to 106 and rushed to the hospital. But he doesn't always get a fever when I expect him to. Sometimes he gets strep with no fever. Sometimes he gets strep with a fever. ??? Sometimes he says he has a fever but his temp is normal. He's just a great big question mark! I think it's interesting that usually (not always) when he gets a fever he's calm and quiet. So maybe the behaviour stuff is an alternative to a fever. Very interesting theory.

Our LLMD uses Bactrim as the first choice med for bartonella in children.

Last week our LLMD made a very interesting comment about chronic strep. She said that in most of her chronic strep patients, the ASO will drop significantly with lyme treatment, but it never quite goes back into the normal range. She said she has patients in the high 700s and 800s, and they will drop to 150, but then won't change. I found this fascinating, especially as my child has both lyme and PANDAS, and after 5 months of lyme treatment his ASO is FINALLY falling. (Currently 306, after being in the 500s for years.) I'm not quite sure what to make of this, and quite frankly it scares me. If he has high levels of strep antibodies in his blood will PANDAS ever go away? Any ideas, thoughts, comments? Has anyone here seen ASO return to normal levels? Anyone with ASO that just won't get back to normal?

The deciding point for me getting tested, was trying to figure out what was wrong with DS. I tested myself before PANDAS DS. He had unexplained chronic pain that went beyond PANDAS (IMO), and I believe his PANDAS started at age 3, but something was definitely wrong from birth. So the more I read about lyme the more I realized it fit the picture, and I had so many of the symptoms too. I had dragged DS to so many docs and had so many tests done at that point, that I decided to test myself first. I was hoping to rule out lyme and not have to test him at all, but I KNEW it would come back positive. And it did - CDC positive even. I recall having terrible foot pains as a child, but not much else. When I was a teenager I had severe disabling back pain with no obvious cause - elevated markers for JRA, but not high enough to diagnose, migraine aura without pain, Raynaud's syndrome (really bad circulation in my fingers and toes), and severe depression. When I was 18 I broke my foot and had Reflex Sympathetic Dsytrophy as a result - my immune system attacked my broken foot. In University I had a chronic cough off and on for years! When I was pregnant with PANDAS DS my brain went haywire - couldn't remember how to drive, where I was going, how to lock the door, how to use a bank machine. It was terrifying. So when I add it all together it sounds so much like lyme. But I never thought of myself as sick. I was always athletic, energetic, no severe joint pains or obvious lyme symptoms. No tick bite. The funny thing is that I don't have any of those symptoms now. I guess my CDC positive lyme test indicates that I have a strong immune response. So I've opted not to be treated. At least not yet. My entire family is positive on western blots - DH, and all DSs. They are all experiencing a lot of symptoms and all being treated. I'm taking care of everyone else, and praying that I'm not being blind, stubborn, or stupid. I really think I'm okay.

You might have better luck asking on www.lymenet.org. They have a flash discussion with a section for seeking a doctor. Good luck!

I've worried quite a bit about how much info is too much. In DS's case he's very self-aware, and asks insightful questions. So on this journey I've mostly been transparent with him. With all he's going through I thought it would be helpful for him to understand as much as possible, and like you said, blame the disease and not doubt his abilities. Poor kid doesn't really get to be a kid does he? <Sigh> I did get criticized from the school, when DS started talking about PANDAS at school. He was saying how he's afraid of his PANDAS, and then started blaming everything he did on it. I've worried about giving him too much information while he has OCD and will get stuck on it, and especially the germaphobia! But it is what it is. It's already a terrifying experience for him (and for us parents!!), and I imagine how much scarier it would be not knowing why it's happening. So for better or worse, he knows all about PANDAS and lyme, what he's taking, and why. I also don't know where PANDAS stops and lyme/bart starts. I don't know if that line can be drawn. LLM's bucket makes sense. It's all mixed up in there, right? We've seen amazing improvements, but are still struggling through other symptoms. LLMD says he will probably take a couple of years to heal. It sounds like forever to me, especially on the bad days, but I try to stay focused on the miracles we are already seeing. I think this is the first Christmas in 5 years that I've looked forward to the new year with hope!

I had a very interesting discussion with DS8 last night. He put his left hand on the microwave stand, and then told me, "Back when I had PANDAS if I did that, I would have to do this." He removed his left hand, and put his right hand in its place, and told me, "I had to make it even". I never knew he had evening-up OCD. With the raging and severe germaphobia, I never noticed. So I asked if he still feels that way now. He said, "No, that was in like grade 1 and 2 when I had PANDAS." And then it struck me, he's saying WHEN I had PANDAS - past tense!!! He doesn't feel like he has PANDAS anymore!!!!!! I don't even know if it is possible to not have PANDAS anymore. But I do know that his ASO which was stuck in the 500s for 2.5 years is finally coming down. We do bloodwork every month since starting lyme treatment in August, and his November ASO came back at 304!!! It hasn't budged from mid-high 500s in years, and now it's falling! YAY!!!!

I sent you a PM

That was a good article! Helpful in visualizing this methylation issue, which is way over my head. But, I'm wondering about the testing too - am I missing something or has no one yet posted exactly what tests to ask for?? It seems that this article, and most of the explanations and the books available on amazon about methylation all seem to be dealing with treating too much homoscystein (under methylation, I think?). Is this the more common problem? I have no idea, sorry! I just bookmarked this and a few others in case we need to look at this some day. Right now we're seeing great improvements in DS8, so I'm crossing my fingers that maybe methylation won't be something I have to really research down the road. Hopefully someone will chime in with the appropriate tests to ask for.

Here's a quick and easy read on methylation that someone posted on the lyme forum. I can't remember who it was, but I still have it book-marked, so here it is: http://www.ceu-usa.com/courses/WC001/test_drive/methylation_cycle.htm

My DS8 had major vocal tics. Last year he disrupted his classroom daily, and eventually was unable to attend school. He also repeated cartoon sounds, animal sounds, random squeaking, and high-pitched squealing ALL DAY LONG. We found out in July that he tested positive for lyme in addition to PANDAS. Within weeks of starting lyme treatment the vocal tics have completely disappeared. I have only heard them once since, and only for a few days about a month ago when we added another antibiotic and he had a temporary flare up of symptoms. His lyme/PANDAS treatment is 5 prescription meds, a dozen supplements, exercise, and diet changes. Not sure if you're interested or not, but if you are you can PM me and I'll share what specifically he is taking. I have no idea what one thing is making the difference, but I suspect it is a combination since we are doing an integrative approach. So far it is working wonders!

We can relate! Fortunately (ha!) our son tested positive for Bartonella so we had clear cause for treatment. This is a really good thread reinforcing that there seem to be no real shortcuts to any of this. With all this talk of herx and reactions though, I'd like to throw a question out that I've thrown out a couple of times before...what does it mean when there is no real reaction to ABX or supplements? We are seeing progress but aside from some minor gains/minor losses after starting things, nothing of note. And those minor things could just as easily be "noise." We are measuring progress over months. Don't get me wrong, I'm plenty happy to be missing the strong negative reactions but it is puzzling. PANDAS + Lyme + bartonella + maybe babesia (but no proof) so much the same as many here. I've told myself that his methylation pathways must be perfect and everything else is working optimally (well, maybe not his immune system) - but - if that's true, he ain't healing any quicker than anyone else here! bill Hi Bill, I don't know what to make of the no herxing either. All 3 of my kids tested positive for lyme. The youngest does not herx at all. I was able to get him up to full doses of 3 antibiotics all within a couple of weeks. No reaction, good or bad. My oldest DS (PANDAS) herxes like crazy. We have to work up really slowly with his meds. When we added his 2nd abx everything went completely haywire. We had to back off, double up detox and try again. Haywire again. We stuck it out and he settled after about 2 weeks. But he really "herxes" hard - return of old symptoms, feels sick, psych stuff, aches and pains, etc with every med and supplement change we try. He's improved dramatically, but had so many symptoms and was barely funtioning when we started treatment. My youngest who doesn't herx only had minor joint pains, no other symptoms that I'm aware of. He no longer has any pains, and his energy/stamina has increased very noticeably. So I guess I'll just be happy that he is getting well without going through all the herxing. It does make me wonder though.

Rage and inability to cope with frustration was DS8's main symptom all along. He did have pains, but they were vague kid-type complaints - growing pains, tummy aches, that we didn't connect to the behaviour at first. The pains eventually became very severe, but not until at least a year after the raging started when he was 3. We saw at least a dozen docs who could find nothing wrong, and we were referred repeatedly to psychiatrists. DS ended up with an alphabet soup of psych diagnoses - the final one being mood disorder (bipolar). We tried psych meds, and loads of therapy for YEARS. Nothing helped. Until we found out about PANDAS last year. Initial low-dose antibiotics made an amazing difference, but only for a week or two. High dose antibiotics made him rage non-stop. THen we found out about lyme/bart/babs and started treatment in August. Now DS8 is not even the same kid. Even this past week my neighbour commented over the fence that he is so different - so relaxed and more social. He still struggles with anger and frustration occassionally, but he doesn't lose his head anymore. He is able to engage in therapy now. His pupils don't dilate into the "crazy cat eyes" that he had when he raged before. I'm sure there could be many different reasons for the rage in your relative's child, but infectious-triggers would be high on my list of things to look into because of our personal experience. If I could go back in time I wish someone would have told me at the beginning to test for ASO, do Cunningham's, and test for lyme via IGeneX. We got very abnormal results on all these test, but none of the dozens of docs we saw ever thought to order these tests. I had to research and ask for them myself. I hope they will find some answers and healing. There is nothing quite as terrifying as watching a child's uncontrollable rage.

Okay, I got curious and did some googling. From what I'm reading, nystatin will kill yeast and fungals, but not bacteria. Probiotics are bacteria, so they are safe from nystatin. But some probiotics also contain a good yeast called saccharomyces boulardii. Florastor has this. S. boulardii would be killed by nystatin, so you want to separate those 2 with as much time as possible between them.

My DS was CamK 176, anti-dopamine 1 four times higher than normal, and ASOs stuck in the 500s for the past 2.5 years, with a baseline of 27 from a draw years ago. So overall a pretty convincing case for PANDAS. I don't recall a sudden onset, just the day when things went from bad to way, way worse. So maybe that's sudden onset? IDK. I just know he's always had these issues, but they were manageable until we moved. After we moved exacerbations came on more and more frequently, and then he just stayed chronic. It got so bad that several times he probably should have been hospitilized. At this time last year he was unable to attend school, take a shower, brush his teeth, sit on a toilet, change his clothes, or even interact normally with anyone in his life. We didn't get very far down the PANDAS treatment road before moving on to lyme. He did 1 month of high dose Augmentin and raged the entire month. Very scary. Then he did 1 month of Biaxin. The biaxin brought out rashes, fevers, and grossly swollen joints. That's when we knew this wasn't only PANDAS. So, to answer your question - the PANDAS treatment of high-dose single antibiotic did not work at all for DS. We have not ruled out further treatments down the road for PANDAS, but at this point he is improving so much on lyme treatment, that we are hoping he will heal completely and other interventions won't be necessary. We can hope, right?

DS takes his nystatin with antibiotics, and at least 2 hours away from probiotics and supplements. I'm sure it comes in liquid (suspension). We had to specify at our pharmacy that we wanted tablets b/c they wanted to give us the liquid, which DS will not take.

The infectious diseases doc that we saw told us to use Stoneybrook, because no doc will argue with their results, and they will report bands if you request it, rather than just a positive or negative result. After doing some research we opted to go with IGeneX anyway. This is because Stoneybrook uses CDC criteria, which excludes bands 31 and 34. These bands are highly specific to lyme. I did not want to waste my money on a test that excludes any evidence of infection. Here's some info on that: http://www.lymenet.de/labtests/brenner.htm And here, copied from Dr. J's website: CDC Criteria are Confusing in Real Clinical Settings CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies. CDC Western Blot IgG surveillance criteria include 18, 23, 30, 37, 39 and 93 and exclude bands 31, 34 and 83. It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM. The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies. This does not make sense. The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 10, 000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives." http://sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist Also of concern to me, was that we first did a lyme test on PANDAS-DS through a regular lab here in Canada, which came back negative. No bands reported, no further info, just a negative. I wish I could go back in time and NOT have that test done! Having that negative test on record has not helped our situation. When DS's elbows and knees started swelling we went to the head of rheumatology and immunology at a major teaching hospital and I said I think he has lyme. The doc said his test is negative so we've ruled lyme out. I wanted to keep pursuing lyme and asked him about false negatives. He said DS's test is negative, end of story. Obviously, it was far from the end of the story. We got a very positive result from IGeneX, and also found out I am even CDC positive. I no longer had any doubts, but we had to pursue treatment privately, because officially DS has that darned negative test on file. So everything was out-of-pocket, until we found an amazing GP willing to stick his neck out for us, and assist us with treatment. He saw the dramatic improvement in DS with our private treatment, and also no longer has any doubts. But he does remind me from time to time, that he is treating aggressively for something that DS has tested negative for, and his neck is on the line if anyone questions what we are doing. Soooooo frustrating! The medical system here does not understand lyme at all. They don't even understand that there are no reliable tests. At the end of the day lyme is a clinical diagnosis, and the tests can only add additional information. They can not confirm or rule out lyme at all. That's been our experience with lyme testing. I hope that helps!

Laura, that's awesome news! Please don't ever hesitate to post positive updates. We so desperately need them. Especially during the hard times. These are the stories that continue to give us hope and to press on through the ups and downs! I personally needed this today, so thank you! DS8 has made amazing progress in 3 short months - nothing short of miraculous! But there is still so much going on with him. He had a new tic this weekend, and an old tic reappeared. His younger brother, also positive for lyme and on 3 different antibiotics, has the streppy breath this morning. Aaaarrrrrgggggghhhhh!!!!!! Still, we're WAY better off than this time last year, when he was non-functional and couldn't attend school. So I'm counting my blessings and celebrating with you! Yay!

My DS8 gets hypomanic/manic when exposed to strep. We saw a clear pattern 2 years ago when he got manic then got a strep infection. I thought it was a fluke, but then it happened again.

I would see an LLMD recommended by ILADS. I'm pretty sure most lyme docs would treat with combo antibiotics, rather than just amoxicillin. You could also go to lymenet.org to their flash discussion and post under seeking a doctor. We treated PANDAS via Dr. T before finding out about lyme. DS only got worse, until we figured out he had lyme. Now that we're focusing on lyme he's getting better. We're hoping that PANDAS will go away once lyme is treated, but that remains to be seen.