LNN

We had a great response to bactrim but have had similar worsening with other changes. Improvements in some respects but other things that had been gone for a long time came back - along with all the PTSD that comes with it. Everything is slowly settling down again, but you're always holding your breath. Detox is my big thing right now and it does seem to help. Your other option is to call the office on Monday and discuss lowering dosage or some other way to be less aggressive. It's one thing to ask a body to tough it out but not to the point a child is at risk when he darts away. You may also want to see if you can postpone the tindamax until the weekend after Easter. It could be too stressful for everyone. No medals for masochism. Take it only as fast as you can all bear.

I suppose any antibiotic can cause herxing, especially at the start of taking it. Are you tracking symptoms and how they coincide with different changes in medications, supplements, diet, etc.? I'm sorry I'm not very familiar with EE and the physical constraints of a feeding tube. Can she still swallow things or does everything enter thru the tube? Do you have any detox as part of your daily schedule? Due to Shae's sensitivities, you may need to work with a professional on developing a plan, but it's an area I'd look into. It makes a difference in our house, especially with the rages and brain fog.

What are you doing for detox? Are you charting your symptoms? Are you doing anything to keep your blood sugar stable throughout the day? Are you staying hydrated? I don't have experience with the nausea but it sounds like your body is crashing and it seems to coincide with a time of day that your body is needing nutritional support. There may be something much more to it, but make sure you're covering the basics at the same time. You may need to use that 10:30 time to experiment and see if a nutritional "intervention" then can help mitigate what you feel at 1pm. Can you buy some milk cartons and add your own carnation instant breakfast? Can you pack a few granola bars or even some orange juice? Sorry - I know these suggestions are simplistic. But don't want to overlook the obvious.

I think my concern was that if some of the donors in our batch of immunoglobulin had been exposed to lyme, then a test that looked for lyme antibodies might show positive, but I wouldn't know if they were from donors or made by my son. So we waited for 10 weeks. No particular magic about 10. It was just when we had a doctor's appt and could get the test requisition signed. The half life of antibodies is, I think, 21 days. So the longer you go after IVIG, the better the odds that any antibodies detected are "native" to your child. I don't have any research to back this up. Just how I approached the test for our situation.

Thanks for the reminder. I was doing charcoal before the first admission, but the hospital did not continue any supplements. I should pull those out again! I'm so so sorry you've been dealing with all of this. I can't imagine the h$@#. A few other detox ideas - alpha lipoic acid (empty stomach in a.m. for best absorption) is an anti-oxidant and helps brain chemistry. Milk thistle http://books.google.com/books?id=J4TFtQeHkQAC&printsec=frontcover&dq=lyme&hl=en&ei=2KKoTczQNsrz0gGvzJz5CA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDoQ6AEwAA#v=onepage&q=milk%20thistle&f=false is a good liver detox (to help mitigate advil/motrin use) and has really helped with mood/rage/idea fixation for my DS during lyme "herxing" (do not use milk thistle if allergic to ragweed). For charcoal, you need more than a pill or two. Dr Sears advocates 10 grams/day, which is a lot of pills. So we try to do about 4-5 capsules when we use it - 2 hrs away from abx. Because of my DS's chronic infection issues, I've come to view his 10 weeks post-IVIG as a long, unmanaged herx. If you're approaching another IVIG, you might read up on detox, as it could make the next round easier, maybe even regardless of whether you're dealing with lyme. The lyme forum has a few discussions. You might also try www.lymenet.org and ask for detox ideas. Some of the ideas I've read there apply to adults so I didn't pay attention to those, but might be helpful for your DS. Your family is in my thoughts and prayers.

So I'm assuming your reactive bands are on a standard western blot, since you haven't done Igenex yet. But you don't say which bands, so it's really hard to comment. I know being steered to a place you never expected has you floored. You just get your head wrapped around Pandas and then it's like having to start all over. I don't know how to accurately describe it, but I have to say I'm having an easier time with a lyme dx than I did with Pandas. First, everyone on the east coast understands you when you say "my kids have lyme" - They may have no idea what it's really like, but you don't sound crazy or like you're inventing some disease. Second, you don't live in as much fear. The "thing" has already happened - now you're just at war. A different feeling than always living in terror of another kid's sneeze or a germy doorknob or birthday party at jump zone. It's a different mindset somehow. Plus in lyme, your arsenal of weapons is larger. As for having two kids with it - that's easy for me. We play and hike together. I've pulled ticks off of them at the same time. In CT, 90% of the ticks in a sweep in 2009 were infected. So it's not hard to understand how more than one family member can get sick. For now, try to be calm. You still have more data to gather before you know what you're dealing with. And plenty time after that to adapt to the idea. For us, it put us on the path to really getting our kids well, so in that sense, I'm happy to be on the "right" path finally - or at least one that's giving us the best results so far. It may be a "blessing" in disguise.

Well, I loved Nancy's approach, but since you can't get underwear on him, can't see a uniform going over well... We too had "naturalists" in the house long after other respectable preschoolers were expected to be fully clothed. So a large part of what you have on your hands may be a combo of age-appropriate, family norms (for our kids, it was just no big deal and we didn't make a big deal out of it so long as they didn't run out into the front lawn...), and sensory/OCD stuff. Considering all the really bad behaviors that can come with Pandas, I'd try to be laid back about this one. Now school-aged, neither of my kids would be caught dead being seen naked. They outgrew it on their own. My son still has his "favorite toy" and will sometimes absent-mindedly forget that others are sitting on the couch next to him, but he turns an appropriate shade of pink when you bring it to his attention. The one "helpful" comment I have - or at least it's meant to be helpful - is that if you think there's any chance his body is still ridding itself of an infection, you might want to look into detox ideas (PM me or post on the lyme board or google). When DS started lyme treatment, our LLMD had him start on some detox things that helped his brain fog. Recently, some "Pandas-like" behaviors returned that we hadn't seen in awhile, and they got much worse when we changed his abx combo and he herxed. So we added additional detox support (in his case, milk thistle but you can't use this if you're allergic to ragweed) and it's notable how his behaviors will subside in a short time (not go away immediately, but get better - like they can get better with motrin). Over a week or so, some behaviors have reduced significantly. So just a thought. If he's still killing bacteria, maybe detox would help things settle down quicker.

As I type, only $10 more is needed for the immediate upgrade. If you were going to make a $10 donation, I'd apply it to the upgrade so goal can be met. For a larger donation, I'd apply it to the website category, as that will be the harder goal to meet.

On these forums, I've learned great information on how to treat my kids and found excellent doctors that I never could've found on my own. I made friends who reached out during seriously low times and really understood the private ###### that I was going through. I've learned about the science of my kids diseases, what helps with inflammation and how to use ERP to cope with the worst of OCD, rages and other things that were tearing my family apart. But now I'm struggling to understand how only a handful of people so far have been able to donate money to ACN to keep things going. There were lots of posts last week about not being able to review threads, getting blank screens. But no one commented that one of ACNs immediate needs is a server upgrade. ACN doesn't ask much of its members. But now Shelia is asking for some desperately needed help. If every member who's been on ACN in the past week donated $25, the goal could've easily been met by now. For the cost of one bottle of a supplement or probiotic you probably wouldn't know about if not for these forums, the cost of one copy of Saving Sammy or Cure Unknown. I know money gets tight - very tight. But so tight that a $10 donation can't be found? In one week, ACN gets thousands of posts from people needing help and support. In two weeks, members have donated a mere $325. If hundreds of active members can't raise the money, how is just one person supposed to do this on her own? I haven't spoken to Shelia and I'm not sure how this post will sit with her. But I can only imagine how discouraging it's been to watch that thermometer not move day after day. What does that say about how we value what she's built? For those of you who read this, please do some soul searching and consider making a contribution. We owe it to our own kids and we owe it to Shelia.

On these forums, I've learned great information on how to treat my kids and found excellent doctors that I never could've found on my own. I made friends who reached out during seriously low times and really understood the private ###### that I was going through. I've learned about the science of my kids diseases, what helps with inflammation and how to use ERP to cope with the worst of OCD, rages and other things that were tearing my family apart. But now I'm struggling to understand how only a handful of people so far have been able to donate money to ACN to keep things going. There were lots of posts last week about not being able to review threads, getting blank screens. But no one commented that one of ACNs immediate needs is a server upgrade. ACN doesn't ask much of its members. But now Shelia is asking for some desperately needed help. If every member who's been on ACN in the past week donated $25, the goal could've easily been met by now. For the cost of one bottle of a supplement or probiotic you probably wouldn't know about if not for these forums, the cost of one copy of Saving Sammy or Cure Unknown. I know money gets tight - very tight. But so tight that a $10 donation can't be found? In one week, ACN gets thousands of posts from people needing help and support. In two weeks, members have donated a mere $325. If hundreds of active members can't raise the money, how is just one person supposed to do this on her own? I haven't spoken to Shelia and I'm not sure how this post will sit with her. But I can only imagine how discouraging it's been to watch that thermometer not move day after day. What does that say about how we value what she's built? For those of you who read this, please do some soul searching and consider making a contribution. We owe it to our own kids and we owe it to Shelia.

On these forums, I've learned great information on how to treat my kids and found excellent doctors that I never could've found on my own. I made friends who reached out during seriously low times and really understood the private ###### that I was going through. I've learned about the science of my kids diseases, what helps with inflammation and how to use ERP to cope with the worst of OCD, rages and other things that were tearing my family apart. But now I'm struggling to understand how only a handful of people so far have been able to donate money to ACN to keep things going. There were lots of posts last week about not being able to review threads, getting blank screens. But no one commented that one of ACNs immediate needs is a server upgrade. ACN doesn't ask much of its members. But now Shelia is asking for some desperately needed help. If every member who's been on ACN in the past week donated $25, the goal could've easily been met by now. For the cost of one bottle of a supplement or probiotic you probably wouldn't know about if not for these forums, the cost of one copy of Saving Sammy or Cure Unknown. I know money gets tight - very tight. But so tight that a $10 donation can't be found? In one week, ACN gets thousands of posts from people needing help and support. In two weeks, members have donated a mere $325. If hundreds of active members can't raise the money, how is just one person supposed to do this on her own? I haven't spoken to Shelia and I'm not sure how this post will sit with her. But I can only imagine how discouraging it's been to watch that thermometer not move day after day. What does that say about how we value what she's built? For those of you who read this, please do some soul searching and consider making a contribution. We owe it to our own kids and we owe it to Shelia.

Momcap, I am so sorry you're having to fight this battle. If it's practical, I'd suggest seeing a US LLMD. But considering the length of treatment, and the possible difficulties of filling scripts and cross-border issues, this could be very difficult. There's a book "Insights into Lyme Disease Treatment"http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801 that covers the gamut of treatment approaches - from Dr J's aggressive abx approach to others who prefer an herbal-only approach. One idea would be to get this book and see if a particular treatment approach sounds like it might work for your situation. I'm guessing it would be easier to get herbs without needing a doctor's involvement. If you were comfortable trying an herb only approach, you could make periodic visits to a US practioner who could then follow-up with phone consults. Your other option might be to go back to the Canadian lyme organizations and look for other doctor referrals. I think all of us have been thru a number of doctors, even multiple LLMDs in some cases, before finding the right match. I know it feels like a kick in the gut right now. And I totally get how terrifying this is. But giving up isn't an option and there has to be a way to skin this cat. If nothing else, you may want to read up on detox and gut support. These are things you need to do on any Pandas or lyme treatment, so you'd at least be laying a foundation while you search for the right doctor. You're in my thoughts...

If he's positive for lyme, I'd personally be advocating for a second abx before contemplating IVIG. Single abx treatment of lyme has a very high failure rate. Most LLMDs will do a combo of abx and rotate that combo as time goes on. If lyme, then IVIG may help in his treatment but it wouldn't be "the" single treatment. You'd still need to be doing the abx combo. So yes, I'd definitely be asking to add a second abx.

It doesn't scream lyme but it suggests your daughter has crossed paths with lyme. Lyme lab tests are less than conclusive for many reasons. (under the helpful threads of this forum are a few articles that discuss why). My daughter had similar results. We spent a number of months ruling other things out (parasites, h pylori, gut imbalance, celiacs, yeast). DD also had a number of Pandas symptoms, including high inflammation markers and extremely high immune complexes that had been rising for a year. So we knew she was fighting an infection, we just didn't have test results that screamed the answer at us. Her strep titers were negative and she had no recent illness. So did we put faith in an ambiguous Igenex result and pursue lyme or dismiss negative strep titers and pursue Pandas? Many of the parents on this forum will tell you that in our small subset of kids, Pandas and tick-borne illnesses look nearly identical. So clinically, DD could've been diagnosed with either. For us, it came down to this: if she had lyme and we followed a Pandas protocol, she might never get completely well. If we followed a lyme protocol and she really had Pandas, chances were still good that she'd respond and go into remission. It felt like lyme treatment was a better bet for her. So far, it's been the right choice for us.

Trudy - your mailbox is full.

We've always seen a reaction to med changes pretty quickly - within the first week. This may be a stretch, but I suppose it's possible that you're just now catching the "wave" of the lyme life cycle (which is generally 3-4 weeks but maybe 5?). Or if you subscribe to the "full bucket" theory - where all these illnesses build up and cause the bucket to overflow - maybe it's a combination of the body fighting lyme plus "exposure" to strep or plus the lyme life cycle that's tipping the bucket. I know it's incredibly stressful because you have no idea if what you're doing is helping. I know the tics are hard, because it's such an "in your face" reminder of something going haywire in their brains and it's so public. But the only way to know is with time. If you trust your LLMD, give it another month and maybe double up your detox efforts. If after that month, you still don't have warm fuzzies, perhaps look into other LLMDs. There are many "protocols" - everything from abx only to herbs only and it's important to be in synch with the person your entrusting to make your child well.

Has Dr B ordered an Igenex blood test? As a general rule of thumb, if a child isn't responding according to "the script" on a given treatment, then it may be a sign that some other sort of infection or disease may be involved - either co-morbid with Pandas or instead of Pandas. The point of doing prenisolone is to calm things down. If you aren't getting those benefits, I'd personally consider tapering down and off of it earlier than planned. I know it's friday and you can't reach Dr B until Monday, but why put everyone through this if it isn't helping? IMO, it's a sign something else may be at play (mycoplasma, a tick borne disease, yeast). (FYI - zinc always made DS worse. He was a ticcer and when I gave him Zicam for a cold, he developed what looked like tardive dyskinesia and his chorea got much worse. When we stopped the Zicam, it went away. You may want to test Vit D and zinc levels before supplementing.)

DD did complain of floaters last Dec. while we were trying to determine diagnosis. And I realize she just may have regular 'ol vision problems. But between her inability to articulate (she's 6) and the lack of understanding about lyme, even in CT, I just worry that the eye doctor could see an anomaly and dismiss it instead of connecting dots. Could just be me worrying about every little thing, but since the stakes could be high and life-long, I'd rather over-react than under-react. It's just driving me nuts that I can't find the name of the eye doctor. It stood out because when I was first looking for an LLMD and I got this eye doctor as one of my referrals, I thought it was really odd. That's what I get for cleaning out emails!

Ironically, sort of the same thing that happens on the Pandas forum when lyme gets mentioned. Someone would join OCDP and say my 3 yr old suddenly has OCD - should I use prozac? and 5 people would jump in and discuss Pandas. Lots of the same information got repeated and the non-Pandas parents would feel like their forum was being taken over. You could understand the objections but it became polarizing. I stopped posting there and now only lurk once every blue moon. I don't know what prompted the survey - though I gather our little bird had something to do with it

I completed the survey (nice job!). I had to bite my tongue and not fill up the comment boxes. Let me know if you're ever in a position to share the results.

Kara, So glad to hear it was a good appt! Must've been a big relief to hear all the things you were doing right! How is DD doing? Laura

Does anyone have the name of a lyme literate eye doctor in CT? I'm certain I got a referral last fall but when I contacted ILADS today, they said they don't have one. So I must've contacted one of the other organizations as well. Does anyone in New England have any opthomologist/optometrist among their doc names? I'll also ask our LLMD but thought I'd ask here first. My DD6 had to start wearing glasses last spring for an astigmatism and she was nearsighted. Today we had a recheck (with a new doctor - last year's doc had the personality of burnt toast). Now she's moderately far sighted and her astigmatism seems to have rotated 90 degrees (not that I know what the heck I'm talking about). I started to ask the doctor but as soon as I pursed my lips to form the "l" word, I knew I'd sound crazy and would get dismissed. No one else in the immediate family needs glasses (aside from old age reading glasses). And now it seems her eyes have gone from near to far sighted. I'll ask the LLMD but would also like to talk to a lyme literate eye doctor.

If you find yourself giving motrin more than a few days at a time, you may want to read up on milk thistle - a detox used frequently to help reduce herxing in lyme treatments. Here's some info that may be helpful http://books.google.com/books?id=J4TFtQeHkQAC&printsec=frontcover&dq=lyme&hl=en&ei=WiCbTdiEJsjOgAfgvfiZBw&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDwQ6AEwAA#v=onepage&q=milk%20thistle&f=false You can also find info at the mayo clinic and other sites such as Univ of Md and Columbia that have medical reviews of herbs. We've found it very helpful. But do not give milk thistle to someone who has a ragweed allergy. The two are related. But from what I understand, milk thistle may have therapeutic effects than can help protect the liver if motrin is being used for any length of time.

Just a reminder to all that ACN has kicked off it's fund raising efforts. I know money is tight for many but I know Shelia would really appreciate any sized donation, whether it be a one time donation or smaller monthly contributions. Anything you can do to help makes a difference.

Just a reminder to all that ACN has kicked off it's fund raising efforts. I know money is tight for many but I know Shelia would really appreciate any sized donation, whether it be a one time donation or smaller monthly contributions. Anything you can do to help makes a difference.