momcap

I don't know if this is even remotely the same thing - but my DS6 sleeps non-stop whenever he gets any illness. He is the least PANDAS-y of my 3 boys, but all 3 have some symptoms of PANDAS. If he gets anything - a cold, a flu, whatever, he just shuts down and sleeps day and night. DH is the same. When DS6 was 3 he got a stomach flu and slept for about 36 hours straight, inbetween puking. I tried to wake him repeatedly to make him drink, but he couldn't stay awake long enough to drink anything. I ended up getting really worried and taking him to the E.R., it turns out just in time, because he was so badly dehydrated. He didn't even wake up when they stuck him a dozen times trying to find his dehydrated veins. He ended up on IV for 3 days!!! So scary. Now when he gets sick I pester him non-stop to wake up and drink, and threaten to bring him to the hospital if he doesn't drink. It's like trying to wake a zombie! I always knew this was abnormal. I never connected it to PANDAS in any way because my classic PANDAS ds8 is the opposite. When he's sick he goes berserk. I only wish he would sleep!

If you go to Dr. Jones' webpage, he has a whole section on pregnancy and lyme. http://sites.google.com/site/drjoneskids/home

My son is also 8.5. He was 7 when we did the biaxin. I would like to revisit a trial of biaxin as well. It really kicked his bum with the extreme herx and stirred things up, but I think that's a good thing. We didn't know anything about detox or have any support for his body when we tried it. Maybe with proper support it would really make a difference. I keep thinking about it, especially b/c it's the drug of choice for myco p. We can't get a test for myco p in Canada, but I think DS has it. He wakes up every morning with a hacking/croupy cough. He's done this for as long as I can remember. We're in the U.S. for testing in Feb, and I'm going to ask for the myco p test as well. Anyway, to answer your question - do I think that combo may be too much for him? Maybe. But it sounds like it might be worth a try, with a plan B if it goes badly. Definitely worth discussing with your doc.

Sounds like you're already doing all the right things! I don't know how safe Advil is to use daily. Dr. T told us to use it daily for short periods of time when DS was in crisis. The dose he told us to give was higher than what the bottle says. So it's definitely something to discuss with a doctor.

I came across this explanation that I found helpful: IgM Positive, IgG Positive, WB Positive = Likely Lyme disease IgM Negative, IgG Positive, WB Positive = Late or previous infection IgM Negative, IgG Negative, WB Negative = Symptoms may be due to another cause or antibodies are too low to detect (Edit - this was in a chart, but it didn't copy right, so I re-wrote it) So in your son's case a negative IgM and positive IgG could either mean he has a late infection, or he had a previous infection. From what I understand IgG doesn't go away. It sticks around forever to help give the body immunity - that's why you don't get chicken pox twice. I agree with LLM's post. If he doesn't have symptoms just keep a close eye on things, but it sounds like it could be gone! Yay!

Ya, no kidding. I was sitting in my doctor's office on Tues with labs - ASOs chronically in the 500s, with a baseline of 27 from years ago, Cunningham's in the HIGH PANDAS range, anti-dopamine 1 four times higher than normal, positive lyme western blot, very deficient vit D (all labs that I requested and most of which I paid for!!!). And my doc says, "We have to consider the possibility that the pain is psychosomatic." Argh!!!! Sometimes I want to shake them and yell at them, but I know it won't do any good. I hope you can find a PANS doc ASAP and that your GP is willing to help in the meantime. Some of the folks here might be able to chime in with useful tests and general treatment advice in the meantime. Some things I found helpful: * test for strep via throat culture and blood tests (I couldn't find a lab that could do anti-dnase B, but you might have better luck than I did) * consider testing the family for strep carriers * test for other possible PANS triggers like mycoplasma and lyme * see if GP will prescribe a longer course of antibiotics, and document any changes * try ibuprofen. Many see an immediate temporary relief of symptoms. There is a wealth of information here on the forum and I hope you find all the help you need to get your child well!

I'm sending you a PM (private message) right now. Welcome to the forum!

Looks like you got a pretty complete answer. Just wanted to chime in and say DS got WAY worse on biaxin too. We tried augmentin for 1 month, during which he raged non-stop. Then biaxin for 1 month. The first 2 weeks he raged, then he calmed down but got really swollen knees and 1 elbow, several different rashes, and fevers. Our Biaxin trial was when I really KNEW this was lyme, and made me finally order the Igenex WB.

I still do NOT have my head around all the KPU and glutamate threads that have been on here lately. But I was reading up on Bartonella and this paragraph stuck out: An unusual feature of Bartonella henselae is its inability to use glucose to derive energy, since glucose is abundant in mammalian hosts. This is due to the fact that it has an incomplete glycolysis pathway. Another closely related species Bartonella quintana uses a similar mechanism for metabolism as well. Both bacteria use amino acid catabolism to generate energy.This was confirmed with oxygen consumption and the production of carbon dioxide (3). It has been determined that Bartonella quintana metabolizes mainly succinate and glutamate. A few years later, it was determined that Bartonella henselae uses succinate and glutamate as well, along with histidine, asparigines, glycine, and serine from the growth medium. (from Microbe Wiki) Does this mean anything significant to you glutamate gurus? I'm lost, but I think this is important. Also histidine - does that have anything to do with histamine? All the high/low histamine stuff that was on here too is resonating. I'm just not pulling it all together... Does anyone know how quickly bart multiplies? How long off antibiotics before symptoms can return? Is it possible within 24 hours?!

DS8 has this too. I never thought of it as coprolalia though. We took him off antibiotics on Wednesday (4 weeks off for the new borellia blood culture). On Thursday morning I poked my head in his room to say "Good morning!". The reply was "Shut Up!". So, 24 hours off antibiotics and this symptom is front and centre again. It's really tough! I don't think I have any advice at all. Just sympathizing. PowPow - I worry about my younger kids too. It's bad enough by itself, but when they have to listen to it I wonder how it affects their development.

A positive result is definitive. If they culture borellia from your blood then there was borellia in your blood at the time of the blood draw. Period. A negative result - not so simple. My LLMD told me they are having an 80% success rate in culturing borellia (lyme) from a known positive sample. AND, you actually have to catch borellia in your blood sample - a bit like a needle in a haystack, since it can be anywhere in your body. You have to be off antibiotics for 4 weeks and do the blood draw in the afternoon when spirochetemia (spirochetes in the blood stream) is more likely. So you could easily have lyme and get a negative result. I am not aware of any test that will definitely rule out lyme disease, and that is a point of contention with a lot of people. Igenex - I'm assuming you're talking about the Western blot - is an antibody test. If it's positive, technically all you know for sure is that you have been exposed to lyme disease. The test can not tell you 100% that you still have it. Although in the lyme world it is pretty much assumed that if you have exposure and were not treated, or not treated adequately, then you have lyme disease. A positive Western blot plus lyme symptoms is what our doctor used to diagnose my boys. Igenex also has a PCR test. We didn't do it, but from what I understand it looks for lyme DNA in a sample - blood, urine, etc. Hopefully others will chime in more. This is just what I understand of these tests from my own research.

http://www.advanced-lab.com/news/borrelia_culture_update.php

My LLMD has the test kits, but none of her patients have opted to run the test yet. We are planning to do it in 4 weeks, and we will be the first. I think there are probably several reasons for not doing it, but I'm speculating: 1. Going off antibiotics for 4 weeks (during strep season ) 2. Possibility of a negative, which tells us nothing. 3. Cost $595 and they don't take insurance. We're doing it anyway, because if we do get a positive it is definitive.

The new lyme test is a blood culture, not an antibody test. So there is no false positive. If they culture the spirochetes from your blood then you have it. However, there are still false negatives. My LLMD told me in a known positive sample they are able to culture borellia 80% of the time. And even if you have lyme there's no guarantee that they will catch it in your blood sample. They suggest going off antibiotics for a minimum of 4 weeks, and then doing the blood draw in the afternoon. Apparently that's when lyme is most likely to be in the blood stream. http://www.advanced-lab.com/news/borrelia_culture_update.php P. Mom, thank you for posting the study! No arguments here! I was not aware that IVIG could cause a false positive on a lyme test. It makes perfect sense, but I never thought about it. With all the PANDAS kids that are testing positive for lyme this is definitely good information to have.

YES! All 3 of my kids speak full blast. But they are all impulsive chatterboxes, so they have to yell over each other to be heard. There is NEVER a quiet moment in my house. Literally, NEVER! Besides talking all the time, they have no volume control. If their voice volume had a dial it would be 1 - whisper, 8 - normal (loud), and 10 - yelling. It's like 2-7 & 9 don't exist. No fine control whatsoever. This symptom, among others, had us looking at ASD for DS8 years ago. My husband is the same. If I can't hear him he will repeat at the exact same volume. I will say, "I still can't hear you, because you haven't changed your voice." Then he will yell, "WELL I DIDN'T WANT TO YELL AT YOU!" I ask if he could find a volume inbetween and he just looks confused, like that doesn't even make sense. Weird. I don't know if that's PANDAS. I'm the one, not DH that has a PANDAS-y past. But this is interesting.

DS8 had the flaming red ears most of the time - very noticeable. It went away shortly into lyme treatment. They were red again a couple of weeks ago along with a flare up of other lyme symptoms. For him it seems to be linked to lyme. The mention of fevers would also make me consider lyme in your situation. I didn't know red ears could be linked to food allergies. I will have to pay closer attention to any changes in diet in the future and see if there is any link for us.

My DS8 and DS5 both fidget non-stop. I recall one specialist appointment when the oldest was 5 or 6, and the doctor commented that Ds was actually unable to hold still at all and gave it some fancy name. I never got that report because the doc accidentally erased his tape and it didn't get transcribed. My youngest is the same way. Can't hold still to save his life! I notice it gets worse when other symptoms flare too. They are positive for lyme, so I can't say this is 100% a PANDAS symptom - I don't know which things are caused by what, or maybe it's caused by something else altogether. My middle guy has some PANDAS symptoms and is positive for lyme, and has never had this symptom.

Has anyone here tried the Cowden protocol? Any successes/failures to report? I'm trying to figure out next steps because my GP is not on board anymore with aggressive antibiotic treatments. I'm trying to decide if we're going ahead without him, or trying another angle. I would love some feedback! Thanks!

I just heard something this week about a LLMD outside of Detriot. My ears perked up b/c we drive from Ontario thru Detriot to Ohio to see our doc. But the person mentioning it did not know the name or any other info. You can check at www.lymenet.org. They have a flash discussion with a tab for seeking a doctor. We got several referrals when we posted there. Good luck!

Sounds like my DS - reacts very badly to strep, in high PANDAS range on Cunninghams, and positive for lyme. I REALLY wish I could get the new test, mostly for my own peace of mind, but also for my family doc who is no longer on board with our treatment plan. He thinks after 6 months on various antibiotics the lyme is long gone and what are we treating now? Last I heard the test is U.S. only right now, and I'm in Canada. Has your DD already been treated for lyme, or was she on the antibiotics for PANDAS?

Thanks for the reassurance everyone! We have an integrative MD/ND for our LLMD. The kids take even more supplements than meds, so they are well supported in terms of detox, detox and more detox, nutritional support, anti-oxidants, and immune boosting. I guess right now I'm just despairing over the feeling of being stuck between a rock and a hard place. I hate the treatment protocol! But doing nothing has never been an option and we've been down so many treatment paths and spent 4 of the last 5 years going to one doctor after another - none of which had any clue. Now we are finally seeing healing. So I guess when it comes down to it I really don't have another choice. I know what I have to do, I just don't want to do it. Okay, time to stop whining and get on with it.

I'm second-guessing my LLMD on a public forum. Okay, so not the greatest move. But I'm desperate for feedback and really want to know if your kids were treated this aggressively. For 6 months DS8 has been on amoxicillin, azithromycin, nystatin, and some bactrim (never got up to full dose of bactrim b/c it makes him agitated and "ragey"). For the last 3 months we have added in diflucan. He's made AMAZING and dramatic improvement from pretty much non-functional and should have been in the hospital, to the best we have EVER seen him function in his entire life. He's back to attending school full-time, caught up academically, made friends, etc. The difference is literally night and day. BUT, we are starting to see old behaviours creep back up. Things are not as good as they were a month ago. The 3 kids had sore throats and streppy breath over the holidays despite all being on multiple antibiotics for lyme. And DS8 got the scarlet fever rash AGAIN, despite being on all these meds. (!!!???) So I'm thinking strep is the reason for the backslide. But I have no idea what to do about that. LLMD wants to add 3 more meds and I'm freaking out and second guessing this. If I follow instructions DS8 will be on amoxicillin, azithromycin, nystatin, diflucan, plaquenil, probenecid AND rifampin. My family doc thinks we've jumped completely off the deep end and is begging us not to do this and to seek a second opinion. I'm reading the lists of possible side effects on all these meds and going into a panic state. How much can 1 little body tolerate? But if we don't do this next step in treatment will he ever recover from lyme? I'm freaking out here and need reassurance to continue, or confirmation that this is too much. Any thoughts? Did any of your kids take these particular meds or this many meds?

I don't know about boy vs. girl since I have 3 boys. But I would say the symptoms are really different in all 3 of my boys. I thought only the 1st has PANDAS - high ASO, positive Cunninghams, RAGE!!!, total exorcist syndrome, and the "Energizer bunny on acid" description applies here too. His problems were so severe we never really worried about the other 2 boys. But then my quiet middle boy suddenly started bursting into tears, chewing his clothing, having tantrums over not getting things exactly right, etc. We chalked it all up to living in this extreme stress and having such a difficult older sibling. After a year of this my Mom said to me, "If you weren't so focused on [DS1]'s problems you would realize that [DS2] has major issues too." That's when the lights went on and I realized all 3 of my kids have it. They all present so very differently: DS1 - rage, mood disorder, SPD, severe anxiety (GAD), OCD, vocal tics, severe germaphobia, episodes of being non-functional, chronic strep, high ASOs DS2 - cries a lot, chews clothing, meltdowns, strep carrier, slightly elevated ASO DS3 - mild OCD, chews clothes, body pains, sky-high ASOs I know we're re-exposed to strep when the younger 2 suddenly start chewing the collars and cuffs of their shirts, and the oldest one goes berserk. I would consider all 3 to be extremely "strong-willed". I don't know if that's PANDAS or personality. And just to make everything so much more confusing, they all tested positive for lyme. I'm having trouble sorting out what is caused by what exactly. But somewhere in all that mess they are all struggling with chronic strep, all have exacerbations, and all have OCD issues. Ya, my house is a fun place to be.

We are using a good quality Omega-3 @ 2000 mg/day, Juice Plus (loaded with antioxidants), and Natural Factors Ultimate Antioxidant which contains NAC, Alpha-Lipoic Acid, Grape Seed Phytosome, Green Tea Phytosome, Curcumin, Rosemary Leaf Extract, Lutein (from Marigold extract), Lycopene (from tomato extract), Sulforaphane (from broccoli powder), and Zeaxanthin (from marigold extract). And the artemisinin they are taking is in a base of curcumin, quercetin, decaffeinated green tea extract and black walnut hull. So that's quite a bit I guess!

Did you try contacting Beth Maloney? Maybe Sammy would be willing to talk to your son...?? I don't count as a young adult , but I had PANDAS-like symptoms and I made it out okay. I was 12 when I started having symptoms similar to my DS's. By the time I was 15-16 I was very depressed, and going through the motions of my life without any hope. I had episodes of severe anxiety and OCD, and depression that turned into mania when treated with anti-depressants. A few years later I started antibiotics for acne. I gradually got better. It's only in retrospect that I connect my recovery to the antibiotics. I never would have known I had lyme disease. I only found out because we were searching for answers for DS8. DS8 has PANDAS and lyme, and at the ages of 4-5 he could have been diagnosed with Aspergers. Now 5 months into aggressive lyme treatment the difference is night and day. Last year he was attending a juvenile bipolar clinic. He was unable to attend school, and had been unable to engage in academics at all for 2 years. He was scheduled to attend a special school this past fall for children with mental and emotional difficulties. Today he no longer meets the criteria for his previous diagnoses of mood disorder and generalized anxiety disorder. His psychiatrist discharged him! He never went to that special school. He is attending a regular grade 3 classroom and getting good grades despite missing the last 2 years of academics. He's entirely caught up, and engaged throughout his day. His teacher, principal, and even our neighbours say he's not the same kid anymore. He is still struggling through symptoms and treatment is far from over, but already the difference is amazing. If you asked me 6 months ago what my hopes were for his future I probably would have cried. Today I am excited to watch him healing, and growing into the person he was meant to be.