momcap

Since my last positive update didn't totally jinx things, I'm posting another positive update. DS(turned 8 this week!) is continuing to heal with integrative treatment for lyme, bartonella and babesia. This week was rough, with lots of agitation, followed by a couple of aggressive days. These are all things we used to deal with on a daily basis. But yesterday he broke through again, and is having good days again! It's like his cycle has sped up. Now his symptoms ramp up for a week, with a small blow up, followed by several good days. This is way better than before, when we could have DAYS of full-out raging, hopefully followed by 1 or 2 good days before things started ramping back up. We are seeing those good days more and more often with less bad days inbetween! Here are the specific changes we have noted so far: * significantly reduced OCD * verbal tics 100% gone * severe germaphobia is almost completely gone!!! * his therapist noted that he made a friend in the waiting room for the first time (she's been seeing him for 4 years!), and that his 1 on 1 communications are drastically improved, as well as his ability to focus and complete tasks * his teacher & principal note that he is engaged in the classroom with no work refusals at all (he missed 88 days of school last year due to behaviour problems, and when he did go it was only for 2 hours in the mornings) * he now likes one of the toddlers I babysit, and tolerates or ignores the other one instead of getting angry when I'm babysitting * He has friends! He goes over to a friend's house after school 1 or 2 nights a week. (I couldn't have imagined this a few months ago) * He let us cut his hair with clippers (would have gone into hysterics before) * He is showering and bathing regularly because HE wants to, not because I make him * Huge reduction in defiance, I would now say he is strong-willed rather than defiant and that's a big difference * Realizes when he's wrong and actually says sorry! * able to think again - can do math again and is catching up on his academics * likes going to church now (hated it before) and can tolerate "church clothes" * feels cold now (used to wear shorts all winter) * can't overeat anymore - his brain is getting the message that he's full And my favourite: * HE'S SMILING! I'm seeing that smile more and more. He even smiled for a picture this week! I know the PANDAS / lyme debates got ugly at times, but if it wasn't for the persistance of you lyme moms I never would have found out we all have lyme. My child is healing and I thank you all from the bottom of my heart!

We use detox supplements from Nature's Sunshine. I'm not trying to push a particular product, but since you were asking for suggestions, you might want to take a look at their website. Our LLMD uses their liver detox, bowel detox, urinary detox, and lymphomax, as part of her core supplements that all of her patients take. We couldn't get he exact same products in Canada, but after 2 months on lymph detox and enviro (general all-round) detox, my kids do not have swollen lymph nodes for the first time since I can remember. My DS does not have motor tics, only verbal ones. Motor tics is the only PANDAS symptom he does not have. So I don't know if this will help with tics or not.

Wilma, we also struggle with probiotics. I swear they make him worse. We have tried different kinds and avoid ones with s.thermophilus. He was doing okay on the one we are on now - Ultamite Flora Critical Care. We added Bactrim this week to the amoxicillin he's already on. So far he's really really agitated. Not aggressive so much, but I feel like that's not far behind when he gets this worked up. We had some really amazing days last week. Now with adding the bactrim they are gone. But I'm feeling hopeful that if we can stick this out the bactrim may actually be helping. He was initially a lot worse on the high dose amoxicillin, but after sticking it out for 6 weeks we had those amazing days. So we're going to hang in for as long as we can and see what happens. What does your doc think about the bactrim causing the aggression? Can you reduce the dose and go more slowly?

Eljomom, I just want to say that I TOTALLY hear you on what you are saying, and share all of your concerns. After reviewing all of the information available to us, we still felt this (ie lyme treatment) was the best path for us. That does not mean we are stuck on this path forever. We will continue to evaluate information as it becomes available, and we still have those same concerns. Right now I know that whenever we have tried to stop antibiotics my son becomes agitated and violent. So stopping is not an option for us or he will end up in an institution. 2 years ago I was completely convinced my child had juvenile bipolar disorder and fought hard to get that diagnosis so we could get help. Then I was 100% sure he had P.A.N.D.A.S., until initial treatments completely backfired. DS has ASOs in the 500s, and CamK 176, and anti-dopamine 1 four times higher than normal. Certainly enough to support a PANDAS diagnosis. But high dose antibiotics brought out more and more lyme symptoms (swollen joints, rashes, stinging sensations, ringing ears, rage). When I started talking lyme to our PANDAS specialist (who is the same one you`re talking about) I got the silent treatment. I hate to say anything negative about any doctor in this arena who is willing to put his or her neck out and help us desperate parents, but my experience sounds like yours. First contact - I was amazed. He really went above and beyond for us. Second contact - had to call repeatedly to get a response. Third contact - in total crisis, DS was raging day and night on the abx he prescribed, and his elbow swelled up like a balloon and turned purple. I had to literally harrass him to finally get a reply. I bombarded him with daily phone calls, emails and even faxed. I cried, literally broke down and cried, on the phone with his secretary. Then I asked about lyme and have not heard ANYTHING back since. Tried many more times to contact and NOTHING! I wish he would have just told me he wasn`t comfortable with lyme disease and I should find someone else. I was left feeling abandoned and betrayed by the only doc who had helped us so far. But doctors aside, something in your gut has you here asking questions about lyme and it is up to you to pursue it or be okay with walking away from it. No one else can make that decision for you. Any decision, right or wrong, doesn`t have to be permanent. You can change course if you know you`re on the wrong one. We have so many times already. There`s no easy answer. My heart truly goes out to you on the financial situation. We are also on 1 small income. I babysit, and raise chickens and lambs to try to fill in the gaps, but it is never enough. Working outside of the home is not an option with a mentally ill child. We drive a beat-up old van that is going to die any day. We drive 12 hours one way to see our LLMD and spend money we don`t have on appointments, meds, sups. It isn`t fair. None of this is. When I read your posts I feel your pain, anger and disappointment, and I wish there was something I could say to help. Please know you are not alone. I`m sending a cyber-hug and prayers to you and your family! (((((((((((((((((((((((hugs))))))))))))))))))))))

That does sound just like the lyme symptom list! It is becoming apparent that yeast is also a problem for my son. Our LLMD is adding diflucan to the nystatin he already takes. Hopefully this will help him continue to heal.

We were in a similar place as you are now - a PANDAS diagnosis, and antibiotics not helping enough, ready to consider immune modulating treatments. I wasn't sold on lyme, but searching for answers and considering it. I was especially worried about an LLMD, because our experience with EVERY doctor we've seen has been that they see things through their specialty. DS has been misdiagnosed with so many things. I didn't want to fall into that trap again. And his Lyme WB came back negative, so I was ready to move on. But one of the moms here encouraged me to test myself incase my kids have congenital lyme. I was willing to try just about anything before IVIG. So I guess I'm lucky that MY lyme test came back CDC positive, so there was no room for doubt. We practically ran to the nearest LLMD, which is a 12 hour drive into the U.S. Ugh. Please see my post from 2 days ago "Seeing Amazing Progress". We are truly seeing amazing progress in PANDAS DS! We retested through IGeneX and he's IGeneX positive, but not CDC positive. All 3 of my kids are positive via IGeneX. Our LLMD only asked us for the lyme western blot IgG and IgM, which it sounds like you've already done. INDs (which is a very weak positive in my opinion) on lyme specific bands and some positives sure sounds like a good reason to visit an LLMD, no matter how far away they are. Have you tried contacting ILADS to see if there's an LLMD closer to you? The LLMD would be the best person to suggest which tests, so you don't waste money ordering ones that aren't worth while. As far as antibiotics affecting results, you can contact IGeneX directly and they can give you that information. I know for the WB it doesn't matter. Good luck!

Thanks for the support! DS is more agitated today, but still overall improved. I finally really understand the "herxing followed by progress" pattern. And I know we are on the right track. This is such a relief!

At the risk of jinxing this, I wanted to make a positive post about the progress we are seeing with DS7(PANDAS). We started in July with a month of naturopathic support - focusing on detoxing, nutritional and immune support. Then he had a tonsillectomy Aug 4th. As soon as he could swallow again we started the antibiotics - amoxicillin working slowly up to a scary high dose which we've been at for 2.5 weeks now, and nystatin as prophylaxis for yeast. And this week we added bactrim. (We're adding zith in 2 weeks, and a cyst buster in 2-3 months.) With all the supplements and meds, he's swallowing over 30 pills a day. In the past 2 weeks he revisited old physical symptoms. He was extremely moody and had a couple of raging fits that were the worst we've seen in at least a year. He had new symptoms - stinging sensations, and a burning sensation on his forehead that made his skin hurt to touch. I kept wondering is this a herx, illness, or a bad reaction to something he's on??? Then this week he had a breakthrough. He's a different kid. He's calm and happy. Over the summer we watched his brain turn back on. He started reading again, can do math in his head again. He sat on the toilet for the first time EVER. His severe germaphobia is gone. GONE! He missed 88 days of grade 2, and when he did go it was only for 2 hours in the mornings and he came home agitated and impossible. Today he is loving grade 3 - going full days and doing the same work as the rest of the class. He's coming home calm and happy. He was even bragging that he figured out all the word scrambles the fastest of everyone in his class yesterday (he's in a split 3/4). The difference that I notice the most is that the meanness is slowly leaving. He was horrible to be around 24/7, and did not have any friends. Now he's calling other kids "buddy". Today he helped our 3 year old neighbour climb up the slide. He told him it works better in bare feet. He helped him pull off his shoes and socks, met him at the top, and helped him put his shoes and socks back on. I was dumbfounded - that he could touch someone's feet and socks, and that he was being so kind. He particularly hated toddlers and babies, and was always mean to this neighbour. He showered or bathed every day for the last 4 days because he wanted to. I'm embarassed to say that he often went 2 weeks without a shower until I forced the issue and created a crisis. He let DH cut his hair with the clippers tonight, and sat calmly until it was done. The last time we tried a clipper haircut was 1.5 years ago and we almost ended up hospitilizing him because it triggered a wild rage that just wouldn't stop. Since then I've been paying for scissor cuts, and even that requires some serious bribing and he complains and screeches throughout the ordeal. I've had to keep changing hairdressers because it is too stressful for the hairdresser and they won't do it again. I could keep going, but the short of it is that we have a completely different kid right now. I'm loving every single second, knowing there will be lots more ups and downs. But this glimpse of a well child is beyond encouraging. I can hardly believe it!

We do all of the above. EMLA cream is great if you put enough on, and early enough (45 mins beforehand). And I guess it depends how deep their veins are, because for 2 of my kids it works well, but the third has very fair skin and deep veins, and it doesn't work for him. For my fearful PANDAS child a detailed explanation helped, making sure to tell him that his body would make more blood to replace the blood that was taken. He was more upset about someone else taking HIS blood, than he was about the needle. We have him play his DSi during the draw to keep his mind busy. And of course the bribe is huge. That helps more than anything. He's had so many blood draws now that he's a pro and doesn't need anything but the bribe now. When he wants something he actually asks if needs bloodwork anytime soon. LOL.

Pathfinder - I don't know the answers to your questions, but we have a similar situation. DS7's ASOs have been in the 500s for 1.5 years, despite a year on antibiotics, and a tonsillectomy. We have a baseline of 27 from 2 years ago, so we know he doesn't just run high normally. He tested positive for lyme in July, and is also being treated for bartonella. Still too early in treatment to say anything for sure, but we are seeing some major improvements. OCD went from severe to mild, he is showering, attending school, and his lymph nodes are not swollen for the first time since I can remember. Our LLMD wants to retest his ASO in 2 months, so I'll be interested to see if it finally comes down at all. All 3 of my kids run high ASOs, and 1 is a strep carrier. All 3 positive for lyme. Ugh. Eljomom - I'm pretty sure any type of doctor can sign the IGeneX forms for you. When I got tested I had my naturopath sign the forms. I've also heard of chiropractors signing. You can probably find someone else to do it instead of sitting on the back burner and being ignored. That's not fair!

All 3 of my boys tested low for vitamin D in August, after spending months outside without sunscreen. PANDAS DS7 was the lowest. We are supplementing D3, but our doc wants bloodwork. Vit D is fat-soluble, so it can reach toxic levels. Be careful!

I don't know the answer to your question, but I have the exact same symptoms. I get sharp little stabbing pains in random places. When it first started happening I used to slap at them, assuming it was a mosquito, or other biting bug. But I never saw a bug. Then it kept on happening in the winter when those bugs are not around. I looked closely and there is absolutely nothing there. This has continued to happen off and on for the past 15 years. Now DS7 (PANDAS, lyme) is complaining of the same thing. It does feel like a sting, but it only lasts half a second and then it's gone. We're diagnosed with lyme, bartonella, and probably babesia. I don't know which of those would cause this, or if it's something else. I also had ankle and foot pain in the past, where it hurts to stand on them. It felt like my ankles were very weak for no apparent reason. That symptom has gone away. If you figure out what it is I would love to know!

Sorry to say, but I enjoyed your post. You had me giggling when you shared about the doc and DH. Sounds so familiar. I think I am in the same boat - lyme and bart. I tested positive for lyme, even by CDC criteria, but as I am reading more about bart, I am sure that it is (or was) my bigger problem. We have not tested for bart yet. LLMD feels at least 2, and probably all 3 of my boys have bart. Just got back a pile of labs on all 3 boys and found out my 4 year old has ASO almost at 700. PANDAS DS7 is still stuck in the 500s where he has been for 1.5 years and not budging one little bit. Geez. Since removing tonsils August 4th, and starting lyme protocol this summer his OCD is disappearing. Here is hoping for continued healing for all of us! Keep us posted on your treatment and progress! I will have to consider my own treatment once the boys are healing. Right now I am focused on them and feeling better than I have felt in many years. Maybe my immune system finally got on top of things, but I always had this sense that IT (lyme, bart) is lurking, and not gone, even when I did not know what IT was. So I guess I am just putting off the inevitable. Not ready to stir the pot yet though.

Will be praying for you tomorrow a.m.! Can't wait to hear if it helps.

We did allergy testing and it was negative, but I think he does have allergies. I asked for a referral to a teaching hospital a few hours away. They did a full work-up and everything was negative again. ??? He gets red, itchy eyes a lot, and a stuffy nose that comes and goes, dry cough comes and goes. He had an anaphylactic (sp?) episode one time and we never figured out what it was. That was very very scary. That episode led into scarlet fever and the worst PANDAS flare we've ever had. Who knows? Sorry for hijacking the thread Wilma! Still so happy for your daughter and hoping for more positive reports! We're in it together, through the ups and downs, and I'm so happy to have folks like you to share this journey with!!

Wilma, this is so exciting! It gives me hope for my DS, as we are adding in meds for bartonella next week. I am already seeing improvements on high dose amoxicillin. His OCD is disappearing in leaps and bounds. He is able to sit on a toilet for the first time in years. We go to Marineland every summer, and last week he asked if he could get a ticket to pet and feed the beluga whales. I was floored. Afterwards he spent 15 minutes washing his hands, but a few weeks ago he would never have touched them, or especially the dead fish to feed them. It's amazing! He also made a friend in the campground! OCD is decreasing, but mood lability is increasing. I don't know if it is the time of year (he always winds up in the fall), or if it's just the ups and downs of treatment. But I'm so pleased to see improvement in some areas already. I'm so happy for your little girl. I pray the improvements continue!!!

Have you tried time-release melatonin? It's supposed to work for 6-8 hours. We haven't tried it ourselves, so I don't know how well it works.

I was tested via IGeneX using my naturopathic doctor. He tried to talk me out of wasting my money because he had sent in so many to IGeneX and they were all negative (we are not in a typical lyme area). He didn't understand why I would pay for the test when I could get a Western Blot here covered by our health care, since he wasn't seeing any different results with IGeneX. I insisted, and when I came back positive he was shocked. He said I was the first one of his patients to be positive. Turns out I was CDC positive too, so I could have just used the regular Western blot that was covered here. But PANDAS DS7 was tested here and negative. When tested through IGeneX he was positive, and just missed the CDC criteria by 1 band. IGeneX uses a much broader criteria, and reports the bands, so you have much more information to go on.

So happy! I hope the good news updates continue!! But even if it's 2 steps forward, 1 step backwards, we will all learn from you sharing this journey. Thanks for letting us in!

For DS7 IgM: 18 + 31 ++++ 41 IND 66 ++ 83-93 ++ IgG: 18 + 34 IND 39 + 41 +++ My other 2 boys (non-PANDAS) and myself tested positive too. DH hasn't been tested yet.

I talked to my dentist about lyme and he warned me that certain antibiotics can cause staining, and even damage teeth in children. He said the worst one is tetracycline. I'm assuming others in the same family of abx would cause similar problems.

That was our same experience over the past 4 years. This really is a miracle. We finally got a family doctor in our area and he just happens to be that one in a million who is supportive and has experience with lyme. I'm amazed. You have an LLMD only 1.5 hours away? Where?!

LOL, ya, but we still drive 10 hours to the LLMD. Not fun! I wish we had one here.

I just got home from an appointment with our family doctor to discuss our IGeneX results and treatment plan. He looked at the test results and went, "Oh yes, this is lyme". He supports our decision to see an LLMD in the U.S. (we're in canada). We went over the treatment plan for my kids and the high dose antibiotics that have me so worried. He reassured me those high levels are necessary to beat lyme, and that we will check liver function monthly and keep on the detox plan. He told me he practiced in New England, so he's dealt with lyme many times. He just reassured me about the whole thing, and is willing to work hand-in-hand with our LLMD, ordering labs and co-signing prescriptions, so we can get most things covered by our Ontario Health Plan. I can't even believe this! I don't remember driving home, I was so excited and overwhelmed (in a good way)!! Can you believe it?! And I was so nervous to drop the "lyme bomb". Wow.

I have had floaters for as long as I can remember. I can see 2 right now, that I wasn't even noticing until I read this post. In highschool I had flashing lights, like far away lightning. In my early 20s I had sparkling zigzag rainbows that were really scary. They were really bad when I was pregnant with PANDAS DS. My doctor said I had migraines without pain. Huh? In December I tested CDC positive for lyme disease. It might be something to consider ruling out.