momaine

3 hours isn't so bad. I drive twice that but it is worth it! I would call the office of the PANDAS dr. and ask specific questions about how they treat and how many kids they've treated and what their costs are, etc. and how often they typically see a patient and how soon they would move to more aggressive treatment if antibiotics fail. I would also call around for a new pediatrician or family doctor. (something I unfortunately have to do soon) Where do you live? Maybe someone here can give you a recommendation. You've got ten days to get someone lined up. In the meantime, I personally, would search the internet for antibiotics you can buy from another country without a prescription. But that's just me. Thank goodness I haven't had to do that.

Knowing what I know now, I'd second the recommendation to see an LLMD to rule in or rule out other infectious agents that cause these symptoms. Initially we thought my dd was classic PANDAS, with the exception that she had never been diagnosed with strep throat. She did have a few sinus infections and sinus drainage issues that we discovered when she was diagnosed with PANDAS, but not with typical symtpoms. She had only drainage down the back of her throat and slight headaches. By the time she was diagnosed with PANDAS, everything made her symptoms worse. (cold, flu, sinus infection, H1N1 shot, etc.) We felt we were on the right track with a negative Quest western blot and a positive reaction to prednisone. I didn't realize that you could have lyme with only one lyme specific band positive or IND. When she did not respond the way we wanted to multiple IVIGs, we ended up pursueing the possiblilty of Lyme. (first two ivigs were wonderful, but she couldn't maintain it) She had one specific band positive and a couple other bands that were either IND or low positive. She tested negative for Bartonella, but our LLMD is treating her for both Bartonella and Lyme and she is making progress. She really herxed at first for an extended period of time but I knew we were on the right track because when we would take a break from the antibiotics for 24-48 hours, she would improve significantly. Her symptoms still cycle to some degree. Don't put all your faith in the tests, however, as they are not overly sensitive. Lyme is a clinical diagnosis and with the symptoms he has, it is certainly possible that he'll respond to lyme treatment even if the tests are negative. There are many reasons that testing is false negative. You can google false negative lyme tests and find many reasons they come out as false negatives.

Neither of our LLMD's or our pharmacist has told us to take Minocin on an emtpy stomach. (but did tell me to take Rifampin on an empty stomach because its efficacy is reduced by food) Dd takes Minocin, Zithromax, and Augmentin at the same time and with food. And on the Tindamax days she takes those at the same time. The antibiotics that need to be taken twice a day should be taken as close to 12 hours apart as possible. 7 hours isn't very far apart. Probiotics 2 hours or more after antibiotics.

I'd also be interested in what your doing for detox. I ran out of Glutathione this week and my dd's been a little worse. (except maybe today) I ordered more but it'll be a few days before its in. Might also just be the worsening post IVIG, but that usually happens right off and she had a good first week post ivig.

The ticks that cause Lyme disease are tiny and easy to miss. I've never found one on myself and yet I have lyme disease. And so does my dd with PANDAS. The only ticks i've pulled off her seemed like the large dog ticks, but I could be wrong. I suspect it was so tiny we never found it. Not sure though. The only thing I know now, is that lyme can cause the same symptoms and if I could do it again, i'd see a lyme specialist before doing prednisone. Hind sight is 20/20.

If I had that option, knowing what I know now, I'd jump on it. Have you done lyme testing with Igenex? Just wondering about the fever? Did they figure out what caused it? Any history of a tick bit or living in a lyme endemic area?

Have you read about herxing? As the lyme bacteria die off, they release toxins in your body that cause a worening of symptoms. (its the toxins they release when they are alive that cause symptoms too, but they release more when they die) Herxing can vary in how long it lasts. It depends on your spirochetal load. Has your son had lyme for a long time, do you think? (I don't keep people on here straight, too much to think about) Has he taken Prednisone for long periods in the past? Are you doing things to help his body detoxify? All these things will play a part in how long herxing lasts. My dd had lyme/bart for almost 5 years before we figured it out. She'd been on prednisone for a couple of significant stretches. The dr. felt like her herxing lasted so long because she probably had a very high sprichetal load. I, on the other hand, probably had lyme for at least a year and a half. I felt better in some ways right off the bat (12 hours after starting high dose antibiotics)but other things are taking longer to resolve and some things are worse still, like the fatigue. Of course, the Rifampin will address the Bartonella more and that might either make him feel better or it could cause more herxing and make him feel worse. I felt worse at first but within a two week period, I felt much better. Unfortunately, this is a difficult bacteria to fight and it can take time. It reproduces slowly, which actually makes it harder to kill. (fewer killing opportunities because it is when it is reproducing that the drugs can affect it most...or something like that) Don't give up! It will come in time. Adding drugs one at a time is a good idea to minimize herxing. Hang in there.

Interesting on the itchy armpits because this is a horrible symptom of mine from the past. I cut out wheat and it went away completely. Now I am like a wheat meter because if I get any at all, my pits itch I was like you with the flagyl too. Now I can take it once a week with no herx. Nice! Good luck. It is getting better! Susan Yay, I'm still feeling alive this morning too. How long will you wait to increase your Flagyl dose? I might do one day next week then and see how I do and maybe increase by one pill the following week. For two weeks now I haven't had a huge increase in nerve pain which had always followed a flagyl dose, so that is good news too. So, wrt the itchy arm pits, did you have other signs of wheat allergies and the itchy arm pits just happend to subside when you quit wheat? It is very much decreased in me now, which made me wonder if it had to do with toxins coming out in my sweat, since I'm doing a bit better. I'm definitely more itchy over all too, just feel like my skin is more sensitive. Hmmm.

My weirdest herx sympotms so far have been restless leg syndrome type of feeling and twitching. I spent one hour just twithing constantly while my heart raced. It was weird. I also have had itchy arm pits. Ha! It was really bad at first but now only happens once in a while and subsides quickly. I wonder if it is because toxins are coming out in my sweat? That bothered me on and off for the entire time I had lyme though but got much worse when I started antibiotics. I'm celebrating (hopefully not to early) that I took my two doses of Flagyl (last night and this morning) and I'm still feeling like I'm alive. I had an hour or two of fatigue and nausea and then it passed. Sometimes it takes longer to make me feel like dying, but the last two weeks it hit me fast and hard, so this is improvement. I was feeling like I might not make it though this last week, but now I'm hopeful again.

Wish this forum had a Like button. So glad to read of the improvement. My heart aches for all the parents and children on this forum and I too feel a personal sense of joy each time I read someone's good news.

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Everyone is different. My dd improved a little the first month, then really struggled for the next 12 weeks before finally beginning to improve again. That also followed IVIG #6, I think. Me personally, certain things improved over night, certain things over the course of a few weeks, and I've been struggling with other sympoms for months. I'm on Rifampin too. Supposed to take it on an empty stomach. It makes my mouth taste horrible and I now chew gum a lot. The Flagyl I'm on has been the real killer. I can only take one day a week so far. It's far too early to give up. Our dd said it could take 16 weeks to 6 months to see improvement if they have a high spirochetal load.

You do need to bring your own Advil and Benedryl for when you leave the office. They need it every 6 hours. You can order take out and some places deliver. We did that the first few times. We always bring a friend for her and she doesn't mind staying now that she is better. We get take out or I go to the grocery store nearby and pick up stuff to make a simple lunch or breakfast. We usually eat a good breakfast at The Sugar Bowl so she has something solid in her stomach before all her medications. We bring a big bag of games. Things that don't take up a lot of space. Cards, dice games, and a few board type games that can be played on a tv tray. We also bring our lap tops so the kids can go on facebook. Dd sometimes naps depending on how she is doing because the Benedryl wipes her out. Other than drinking plenty of fluids and bringing a swim suit for the hotel pool,that's all I can think of. My dd tends to get headaches a few days after ivig if she isnt' careful about drinking lots of fluids.

At Dr. B's they know what to do to keep the side effects minimal. Drink lots of fluids with no caffeine before you go and during the whole week after. They will give you benedryl and motrin and you may want to ask them about a prescription for Prednisone. I've been able to use it minimally with my dd, but it does help keep side effects away. I also got a prescription for a head ache medicine from them that its nice to have on hand, just in case. Sometimes I keep giving Advil for several days after to prevent problems.

There is a movie theater 5 minutes from the office.

Thank you for the advice! It sounds like I should have posted this on the PANDAS board? This definitely gives me a lot to think about. It's interesting b/c I've sometimes wondered whether I have chronic Lyme disease myself. Many of my summers growing were spent in rural Wisconsin, and on one occasion as an adult I removed a deer tick from my calf (never had a bullseye rash or other symptoms, but I know that doesn't mean anything necessarily). In college, I also had a terrible "mono" shortly after a summer vacation, but I've since wondered whether that was Lyme, too. (Ever since, I have suffered from migraines, unexplained muscle pain, some tingling in extremities, fatigue, etc.) Hypothetically speaking, if I do have untreated chronic Lyme disease, would that have affected my son in utero? Lyme can be transmitted from mother to child in utero, yes. A good place to start learning about Lyme is in Pamela Weintraub's book, "Cure Unknown, Inside the Lyme Epidemic." Great read! Ilads.org is a great place to start on-line.

A couple of things stood out in your post. (Mind you, I'm coming from finally figuring out my daughter with OCD/tics has PANDAS or PITAND and Chronic Lyme Disease) The fact that you developed anxiety/OCD when you were pregnant with him and he has issues that sound very PANDAS/PITAND like, make me suspicious of Lyme. It is possible that you contracted Lyme and one of the co-infections (Bartonella causes anxiety and OCD)while you were pregnant and that you gave it to him in utero. If I could give you one piece of advice, it would be to see a Lyme Literate doctor recommeneded by ILADS.org and at least rule it out. Might save you years of pain and worry. It is important to see a doctor who understands lyme and the coinfections and not a regular pediatrician or family doc. best of luck

When my daughter had was completely incapacitated by OCD she could still mostly function well around her friends with a little bit of quirkiness thrown in. Most didn't notice or didn't realize there really was something wrong. Like the facial motor tic, one kid mentioned that dd was making funny faces and thought she was doing it on purpose to be funny. Other things she would hide, like when she had to take extra steps, she'd walk behind her friends so they wouldn't see. What I told each kid or family really depended on the kid and the family and how I thought they would take it and how my daughter was doing when around them. My dd always takes a friend to her IVIG apts. because she's way less stressed/OCDish around her friends. So the families of the kids who have come with us, have been completely informed. The kids, who are teenagers, really don't understand the depth of her illness but they know there is an autoimmune disorder with OCD related to strep and now Lyme disease. Dd hides it well around her friends. The ones who I felt would understand were very understanding and helpful. The one I thought might not, isn't hanging around here anymore. (she was always the one to make fun of people behind their backs, and make jokes about kids with tourettes etc.,) Go figure. I did tell her mom but never did tell the dd. I do think her mom must have talked to her about it though. Not sure what she said. Her mom was really nice but I just had this feeling about her dd. All the while she's making jokes about people with tourette's, my dd is ticcing when she's not around. My dd didn't get upset by it because she didn't identify with Tourette's Syndrome but had she not been diagnosed with PANDAS, she would certainly have been diagnosed with TOurette's. (something my dd does NOT want to think about) At that age, I'd keep it simple and tell them he's been sick and it affects how he behaves sometimes and if they need you to intervene in anyway, to please ask you and to be patient with your son while he gets well.

My DS was completely negative on a standard CDC WB. He had 5 bands on Igenex - bands 31, 34 and 39 - which are highly specific to lyme but are not measured on a CDC WB. The negative your DS rec'd shouldn't be relied on, especially if he has classic symptoms. PLEASE read Cure Unknown by Pamela Weintraub, or if your reading time is restricted, at least read this: http://www.astralgia.com/pdf/EL_Lyme.pdf which is a 7 page "cliff notes" version of her story I am not trying to diagnose your son. But I do urge you to test with Igenex and/or see an LLMD. I second that urge. Please see an LLMD. And find someone to get your 2 yo with the bullseye rash on antibiotics immediately! If you'd been through the ###### that we've been through, you would understand our urgency. The possibilities of illness from undiagnosed Lyme are overwhelming. The bullseye is indicative of a current infection and that alone warrents treatment. I also wanted to state, that I understand money difficulties and trying to decide who to go to and where to spend your money, not wanting to waste it. (or even charge it) I've always been frugal and hesitated to take my kids to the doctor for viruses that had to run their course anyway. But, when your child gets as sick as mine has from untreated Lyme and now PANDAS/PITAND, you stop thinking about it at all and just want your child well, even if it bankrupts you. At one point I did not think my daughter would ever live independently. She is doing really well now but its been one long hellacious road and one I would spend any amount of money to avoid if at all possible.

Hind sight is a wonderful thing, isn't it? I now know from thinking back that I'm certain my dd contracted the Lyme/bartonella before she presented with PANDAS symtpoms. I'm still not sure what causes her autoimmunity but its there. She developed mild OCD at the time that she had the flu-like illness from Lyme. She had difficulty breaking at night, pain in her chest, and a racing heart. We thought it was all from the flu. She slept in my bed while she was sick and never could sleep alone again and she had been sleeping alone for many years. She was almost ten at the time. The OCD was somewhat managable for almost 3 years (with zoloft and therapy) then she had an exacerbation that incapaciated her, completely. At that point, we figured out the PANDAS aspect of it but at that time, any illness made her OCD go crazy. Cold, flu, H1N1 vaccine...never was diagnosed with strep of any kind, but did develop allergies and sinus infectins due to inflammation in her sinuses. The sinus drainage issues did not resolve at all until she was on Lyme treatment. Hmmm... So yesterday my sister asked me to walk to her garden a hunderd feet up the hill. I found a tiny, and I mean tiny, tick embedded on my foot 4 hours later. It looked like a speck of dirt and the only reason I looked closer was because it wouldn't come off. I happen to be at the lab for my dd's blood draw and had them get me a pill bottle to put it in. I saved it. It looks like dirt speck, but i can see legs if I really peer at it closely. I never felt it at all. I pulled one off my dd's scalp some years back and the head stayed in. I put salve on it and hoped it woudln't get infected. She never complained about it again and I forgot to check it. lyme was not on my radar. Kids with Bartonella tend to have their ocd come on more slowly than that of JUST PANDAS. That is why I ruled out PANDAS for a long time because she wasn't incapacitated overnight. It grew slowly, but certainly followed that flu like illness. Then we had a big exacerbation that incapaciated her. That also grew over a few weeks.

Jennifer, sounds like you are on the right track. Best of luck to you with the LLMD. My dd took a while to improve after starting lyme/bartonella treatment, but is finally doing better. Hang in there. For us, the lyme treatment combined with IVIG has been helpful. I hope it is for you as well.

My dd never showed a rise in titers but was considered text book PANDAS otherwise. After a couple IVIG's and not continueing to progress, we discoverd she has Lyme and Bartonella. It's possible that she just doesn't make antibodies to strep but its also possible that it was always the Lyme/bart at the core of her symtpoms. Don't know if we'll ever know. By the time she was diagnosed, everything made her symptoms worse, colds, flu, H1N1 vaccine, etc. Her immune system was all wacked out by that point. Best of luck to you. If I could do it all over again, I'd see an LLMD right off the bat. Can't undo what's been done though.

My dd on lyme treatment only occasionally gets stomach upset if she hasn't eaten enough when she takes her meds. I on the other hand, have suffered with nausea of which the timing seems like a herx. It started when I tried to take Minocin. Day 3 and 4 I was sick and stopped it. Took a break and started it again. Day 2 and 3 I was sick and ended up switching back to Doxy. Then I started Flagyl. First week I took two doses (one day) and just had fatigue the following half a day. The next week I took 4 doses (2 days) and on day 3 and 4 I was nauseous, had extreme fatigue, and nerve pain. (exactly how I felt after the Minocin) I ended up having to take a half day off from meds to recover. The following week I went back to one day of Flagyl. I just had two days of fatigue. The next week I did one dose (1/2 day) and by the end of the day I had nausea, fatigue, nerve pain that lasted all week. This last time I managed to get in two doses and had nausea, fatigue the first day, better today which is the second day, but still don't feel great. Seems like a herx to me. Wish I could puke if it would make me feel better. Tired of feeling like I want to just die. Thank God my dd is doing okay right now.

Dr. B in Ct is good at finding reasons for coverage. 17 vials of blood draw after that first apt. My dd has gotten 1.5g/kg and more recently 1.7g/kg with him. We've had two different insurance companies.

I sent you PM, but short answer is Dr. B in CT is her immunologist. Dr. J in CT is her Lyme doctor. She is taking Azith, Augmentin, Minocin, and tindamax for lyme/bart infections. I would say yes, she is stable, and FINALLY, slowly improving. It's been a long journey to get the right diagnosis and on the right meds. Not an easy path nor a quick fix, I'm afraid.