kmom

Gosh, I wish you could get to one of my doctors (or any very experienced LLMD) to help you figure this out. While I was utterly confused w/ our situation last fall, a wise retired psychologist who volunteers at PALyme.org gave me some great advice. She said that looking back at her career, she believes most of her patients had an infectious trigger. She said there's an old medical book for med students about psych symptoms and diseases and the front cover of book has an enlarged spirochete on it. She thinks the author was ahead of his time knowing bacteria causes most psychological disorders. She thinks SSRI drugs have their place for smaller scale issues but the types of issues we parents on this board deal with are much worse and she believes are infectiously caused and many times by the nasty spirochete bacteria. I don't believe my doctors after hearing those symptoms would tell you it wasn't Lyme and turn you away without really investigating--either more testing (provocation testing) or just Rx-ing the the abx to see if there's a herx and then improvement. Gosh, there are countless stories how the sickest people have neg. test results. My kids results are turning positive as we treat. Not to say your son has Lyme and co-inf's for sure but gosh he sounds like my little guy (Borrelia/Bartonella). I used to wonder how such a sweet boy could have these evil moments. It was like his brain was fighting his body but he didn't want it to happen. It's hard, but dig deep to keep up the fight and figure out whatever it is. It's worth it. Try to find a dr. that will back you up 100%. It makes a world of difference. <cyberhugs>

Thanks Philamom! Yes, the Cipro totally helped the kidney infection. I feel really good today! I was afraid to see what would happen by dropping my other abx's and going on Cirpo. Didn't know if it would make me herx trying a new abx or what. I had some upper back pain yesterday but I usually get that day 5 of Tindamax. I stopped Tindamax on day 4 this cycle due to the kidney infection. So I think the back pain could be due to Tindamax still in my system. Wasn't as bad though b/c I stopped that Rx early. I am still in shocked I could get an infection while on 3 abx's! I thought one would target it! How are you and your daughter feeling?

You sound like me. As I researched the symptoms for my kids, I kept thinking I had some of them but it was just coincidental. Unlucky/lucky for me I ended up getting a flu vaccine and that mixed w/ stress from sick kids sent me over the edge and my quiet Lyme became an active full blown infection. It was shocking b/c I had always felt really healthy and suddenly I had major deep bone pain, sore soles of feet, those electrical currents from elbows to hands, tingling and numbness in fingers and toes, felt cold all the time and even if body was warm, my hands and feet were freezing, I was exhausted, brain fog, neck/back pain, etc. On one my worst days my arms felt like they weighed 100 lbs. and were so heavy to lift. It was bizarre to say the least! I've learned from all this to listen to you insticts no matter how crazy it seems. I felt sick within days of starting Doxy. Our LLMD didn't put me thru extensive testing. The kids had already had Igenex testing done and there was no point to wait for weeks for test results while I was suffering. I had my reg. Dr. do a WB by Quest and of course it was negative! But our LLMD knew by my symptoms, history and my kids being sick that Lyme was likely the culprit and he began treatment. He did have me go for a CD 57 test which was a 38 and he felt indicative of Lyme. He had me fill out of a symptom chart and by the way I answered, my dx'd seemed to be Borrelia and Bartonella but Babesia seemed more unlikely. It was the same dx my kids had already gotten. I would definitely see an LLMD so he can help you figure it out.

In hindsight the signs and symptoms are very clear, but I was still stunned I could get a kidney inf while on Doxy, Ceftin and Tindamax! Has this happened to anyone? Signs and symptoms were confusing between herxing I get by day 5 of the Tindamax cycle (major neck, back and leg pain) and my monthly cycle. So I thought it was herxing and menstrual cramps that happened to come early and felt stronger. Then when I got the sharp pain in my left kidney the past few days, I realized something else was wrong. I went to my local dr. and he said since pain ascended--started in bladder up to back--it was probably a bladder inf that went to the kidney. He gave me an Rx for Cipro but I explained I was on Lyme tx and already on abx. I was embarrassed to say all 3 abx's...how childish of me but you know the looks you can get from others when they hear 3 abx's. So I said Doxy, left it at that b/c I wasn't adding in Cipro till I heard back from my LLMD...I had called the night before anyway after hours but hadn't heard back yet. I was more concerned I had kidney stones and that is why I to the local dr. looking for a script for an ultrasound. I was trying to avoid that excruciating pain if possible. I called back my LLMD immediately after the local dr's appt and luckily got to speak to the receptionist this time. She told me to hold tight till LLMD called me back. He did and said, he's seen this happen. He agreed w/ the Cipro but told me to get off the Doxy, Ceftin and Tindamax for now. We have a check up next week anyway and we'll see my progress & look at lab results. I happened to be doing a regularly scheduled CBC & metabolic panel this week from LLMD and I got local dr. to check uric acid level in case my liver cleanse a few weeks ago where I drank a lot of apple juice (uric acid) did cause any gravel or stones to produce. So this threw a little curve ball in healing process.

I couldn't agree more. I know it's hard to find options if they aren't available and I realize it's expensive to travel to doctors elsewhere but we got the same similar answer from a local LLMD (although I don't consider him an LLMD in my book). We so badly hoped he would be THEE dr. for us b/c he was 2 miles down the road but just wasn't the case. He is probably very good for acute cases where it's obvious Lyme but in cases where people have a chronic Lyme infection and no distinct positive labs, he wasn't helpful. This particular dr. went right to IV drugs too w/ a positive result and it scared me. I wanted a Dr. who didn't have a recipe format. Each case is so individualized and my kids didn't fit into his dx and tx style. So we moved on thank goodness. I can't imagine where we'd be if we didn't keep pushing for an understanding dr. to help. It's a night and day difference since finding dr's better versed in Chronic Lyme. So it may be hard to find a good LLMD nearby unfortunately but I can tell you to keep searching. My DS had major rage, frustration, defiance, perfection OCD, etc. and since tx-ing for Borrelia and Bartonella, it's amazingly better! His Igenest WB isn't obviously positive by any means. His Igenex Bartonella IgG was positive but not his IgM so that 1st LLMD insisted it was a past infection and not a current one and wanted to keep testing till it was an obvious positive. It felt like a very slow process while my kids had been unglued for some time. So after that I sucked up the consultation and follow up fee and moved on. Ironically, his office manager/wife called a few weeks ago to follow up (I believe their business is suffering and they were just looking for more $) and she asked how kids were doing and if we decided to take them off the PANDAS abx's in order to do more Lyme testing (which I never agreed to back then or was ever willing to b/c they would fall apart). I explained we went to another LLMD out of state and even got another opinion from Dr. J and those 2 dr's were in agreement that Borrelia and Bartonella were the root cause of problems. The kids were being treated and they were doing so much better. She then tried to backpeddle and said the dr/her husband was open to try some abx's to see if they improved. I told her point blank that I needed a dr. who was confident in tx and had experience treating kids who weren't obviously positive but could make a good clinical dx. She quickly got off the phone and I felt a little satisfaction from telling her our progress but much more satisfaction seeing my kids return to school, sports and a more relaxed state of mind. It's still a work in progress as they herx from Tindamax on weekends but it's expected. Good luck! I hope you find a good dr. who can really sift through your son's symptoms.

Lyme Mom, I love reading about your son's and your recovery. It's so uplifting! It's also comforting to know we're seeing your doctors! I have heard of the Myer's Cocktail but not sure what it entails. Could you share? Also, any tips on detoxing? We take 2 charcoal capsules/day. I do have bentonite clay but out of convenience we do the charcoal mainly. Been looking into Burbur drops. I read today on another post not to take Milk Thistle w/ Rifampin. My kids do that daily. Dr. never told me that. So now I am questioning our med/supplement regimen. Any tips/guidance would be greatly appreciated!

This is just our experience but my 2 PANDAS kids weren't making enough gains and then went downhill last fall. We were told Lyme WB was negative all last summer but then we really pushed exploring Lyme and the kids were dx'd w/ Lyme and Bartonella. We didn't realize we were actually beginning the road to Lyme protocol w/ PANDAS b/c the PANDAS Dr. had them on both Azith and Augmentin halfway thru PANDAS tx. We could never drop either abx after they happen to be on both b/c the kids would backslide badly. So, when we finally got w/ a good LLMD, he kept them on Augmentin for strep issues, Azith for Borrelia Lyme and added Rifampin for Bartonella and it made a world of difference for all symptoms, especially OCD. They definitely herxed and got worse for 1-2 wks before we saw a steady decline in symptoms. It scared the heck out of me but in hindsight, it was a wonderful thing. They were first put on a lower dose of Rifampin in Nov. by our integrative LLMD. He suggested 300mg Mon-Fri in the evenings only. We were still waiting to see Dr. J for a 2nd opinion and when we finally did in Feb, he tweaked that a bit. He finds you need to really nail the Bartonella continually w/ no down time. So for my DS6 (55 lbs) Dr. J actually cut down the Rifampin to 150mg but has him take it AM and PM everyday. It seems like that change wouldn't do much b/c it is essentially the dose but splitting the mg's throughout the day and adding in weekends caused a herx and then even more improvement. As for my DD9 (65 lbs), she is on 300mg in the AM & PM everyday and she too herxed a little and then it seemed like the last bit of OCD disappeared after the herx. My DS has perfection OCD. We still see some of that but VERY minimal and if it never gets any better than now, it is finally VERY livable. People wouldn't notice and might just think he likes his ducks in a row but nothing major. So although OCD was bothersome and caused him to take forever to draw a picture or practice writing his name for homework (literally could take 20 sheets of paper!),his ODD and frustration/rage were more prevalent. My DD on the other hand didn't have the ODD, frustration and rage. She had major contamination OCD. When I think back to when this started last May for her all the way up through herxing after starting Rifampin, last Nov/Dec, she's in such a better place. She stopped living during that tough period. We all did. We couldn't plan anything b/c we never knew how the day would go. We never knew if she could handle school. For a while she couldn't eat anywhere but home, washed her hands till they bled, had major anxiety, etc. Now she'll eat anyway, tries new foods, eats food that she ate before she got sick like sushi, goes to friends' houses again, never misses school and is just her old self for the most part...I say this b/c since adding Tindamax in on the weekends, the kids have herxed a little. It's more of a "not feeling well or right" feeling. We tweak that too. She's supposed to be on the Tindamax 2x/day Sat. and Sun. For instance, this weekend, she took the meds Sat. But Sat. night she felt "a little weird". I still gave her the Tindamax Sunday AM but then she began to backslide. She felt like she just didn't feel well, was crying a little and hiding under her covers in bed. I gave her an epsom salt bath, ibuprofen and she pulled out of it within an hour or two. Then we went shopping at the mall for her Easter dress and she was back to her old self. Due to the AM reaction, I didn't give her the Tindamax Sunday night b/c I try to keep her feeling as well as possible so she continues to attend school regularly. Dr. J told us to give Tindamax on Sat. and if no herxing continue giving it Sunday. If the child herxes, don't administer Sunday. So we're still working on building up to the recommended dose of Tindamax. I am on it too and I can tell you, I herx too and it isn't pleasant so I'd rather go at it somewhat slowly so that these kids who had a horrible time last year can better enjoy their childhood. I'm all about killing these bugs but just want them smiling and laughing more as we do it b/c no kid should ever go through what PANDAS/Lyme kids go through. So as you can tell, I think targeting the Bartonella w/ Rifampin really helped my kids' OCD, I feel that it's the whole treatment plan too which included the other abx's, diflucan for yeast, detoxing and supplements. Best of luck.

So I had probably one of my best weeks last week. I started back to running a bit (used iTunes free trainer where I was trained to walk then run and continue those intervals to get me back slowly). It was even my on weeks for Tindamax (LLMD has me pulse it 1 wk on, 1 wk off). But, on day #6 of Tindamax I felt terrible. This is the 2nd cycle of Tindamax that this has happened. The 1st few cycles I dealt w/ a queasy stomach, vomitting, fatigue and pain in back left leg during the week. But the last 2 have been much better except for that 6th day when I get major neck and back pain and pain in back of legs. In order to combat it, I've gone for massages on day #7. At least there's a pattern and some relief. But now today, (day #1 of off wk of Tindamax), I feel urinary tract issues. It feels like the beginning of a UTI. I'm on Ceftin, Doxy and just finished a week of Tindamax so it seems that a bacterial infection would be impossible. Could it be a viral UTI??? Herxing??? I had a bottle of AZO, those cranberry pills and I took them just now. The only other thing I changed this week is that I added green smoothies into my diet--Kale mixed w/ Mango and water. Could that mess up the pH of my body and cause this? Any advice is greatly appreciated.

Wow! That car is awesome! So it won? I want to drive it around my town for Lyme awareness!

Are you kidding me? Oh, I am so tired of having to fight the ins. companies along w/ the disease. It's so wrong! I think ours was covered by Blue Cross. I'll let u know if it wasn't. What a pain!

Hi Lismom, I know not every child responds the same but I can give you some hope. DD9 dx'd w/ PANDAS last May. DS6 dx'd 3 wks later which blew my mind! I thought one sick child was too much to handle but 2? It seems unimaginable! My daughter's was sudden after multiple stubborn strep infections and T & A surgery. It just seemed like classic PANDAS. I had tunnel vision and went right for the big gun PANDAS Dr's. My DS seems to have had underlying Lyme issues since birth...collick, terrible reflux, major milk/soy protein intolerance (had to special order formula that was broken down to amino acids or he had vomitting and major colitis), joint pain on and off (we couldn't tell if he was just being difficult when he didn't want to climb the stairs to bed but dr's told us it was just growing pains.), didn't like being dirty (I remember making him jump in mud puddles one day to--exposure therapy???), multiple infections (sinus, croup, ear--tubes at 7 months old) and just an overall feeling of discontentment at times throughout childhood. I believe the Zithromax ped Dr. used to put him on for infections helped keep the symptoms at bay. So you can see, 2 kids w/ 2 different presentations. We battled only PANDAS for 6 months and never made enough gains. Dr's kept saying they were negative for Lyme, but I had that gnawing feeling in my gut it was. I too got sick w/ it after the flu vaccine so as things became crystal clear, we got to a great LLMD and got answers. So far we know PANDAS/Lyme/Bartonella. They were already on Augmentin and Zithro from PANDAS Dr. but Rifampin was added in by LLMD. It was the best thing we ever added to meds. At the same time Diflucan was added for yeast so that may have aided recovery too. I will tell you, we had the worst Thanksgiving ever. We were all falling apart. I was so sick and DH and I were trying to care for 2 kids who were getting worse as the Rifampin kicked in. I literally remember having DD on the staircase crawling and crying/melting that she couldn't stop crying and things were eating her brain and my son having major rage and opposition. I was taking one to one bathroom for epsom salt bath and my DH was taking the other to the other tub. The meltdowns could last from 30-90 mins and it felt like they would never end. Common symptoms worsened and others were popping up. The feeling of electric currents going from elbow to hands, hip pain, stomach pain, etc. It was horrific. My DD couldn't attend school. At the time, I knew it could be/probably was herxing, but still in the back of my head I was thinking, "What if it's not and they are never going to get better? How do you watch this daily?" It was so unfair for kids to feel this way. I'd say after a week or two it got somewhat better and within 4 wks, it was even better. Every week has gotten better and then we'll have a setback w/ a med change or increase of mg's. By the time we got in w/ Dr. J in Feb., he was so happy to hear they were put on Rifampin and other meds b/f he saw them. He could see the progress in them compared to how we described them in the past. They aren't 100% yet but if things never get better than they are right now, it's good!...but that's while on tons of meds so we are all still healing! Our LLMD in MD we first saw and still see is great but Dr. J tweaked a few things on the kids. He felt taking Rifampin only during the weekdays in the evening wasn't enough. He switched it to everyday and 2x/day. Our LLMD in MD was fine w/ the switch and supported it and I can tell you they herxed w/ that change for sure but got them even closer to healing point. My DD's teacher is amazed at her transformation and the difference was addressing the Lyme and Bartonella b/c PANDAS protocol only wasn't getting us anywhere fast! I am so grateful to this forum for educating me daily and for making me question the PANDAS dr's who kept saying, "No, they don't have Lyme. Their Western Blots are negative." The one PANDAS dr. to this day is SHOCKED that we all have Lyme and thinks it's very rare...he had some weird OCD/hoarding habits himself that made me want to tell him to visit an LLMD! LOL! So keep plugging away at what you are doing. Of course IF it's too much adjust like SF Mom said. As my LLMD tells me, "Slow and steady wins the race. Lyme isn't a 100 meter dash, it's a 26 mile marathon!" He tells me that whenever I get ahead of myself and say, "So when will I be done w/ meds?!" Good luck!

I followed the Andrea Moritz method. I bought his book from Amazon b/c my nutritionist couldn't keep it on the shelf. The prep work begins on a Monday and the actual cleanse begins Fri into Sat. The weeksdays you are just prepping by drinking 1 qt. of apple juice (organic is best). My nutritionist had me add in 40 drops "Phosfood" drops. It's liquid phosphorous. I need to ask her why that's added in. See, I got a copy of the cleanse from my nutritionist and started b/f I got the book. The directions I had were very similar to the book but the Phosfood drops weren't in the book. Maybe it works w/ the malic acid in apple juice to soften stones??? Here's a simple explanation of this cleanse: http://www.ehow.com/how_5106796_do-moritz-liver-flush.html The book really explains a lot in detail. It's quite interesting if all true. It's amazing how important bile and a healthy liver is b/c it causes a lot of problems for the whole body down to allergies...who would have thought!? I figured I had nothing to lose. It's more apple juice than I'd normally drink in a day but rather simple all week. But I was dreading Fri. afternoon. Being told not to eat, makes me think I need to eat! LOL! But that part was easy too. I thought epsom salt would taste like table salt. NOT THE CASE! Tasted terrible! The book gives a lot of tips on how to replace any ingredients that you can't tolerate whether it be due to allergies or personal taste. Luckily I read enough of it b/f the cleanse to know to pinch my nose when drinking the gross stuff (knew that from eating fish as a kid but didn't think to do it for the cleanse till I read that tip in the book!). I also read that when it came time to drink the olive oil and lemon juice, to eat a little honey in between sips if you can't do it in one non stop gulp. I don't know how anyone could. The honey helped a lot! I never got queasy. I hear it's normal if you do but eating a light breakfast and lunch...fruits and veggies, no fats, really helps cut down on queasiness. As far as symptoms that caused me to do the cleanse...I was complaining to the nutritionist how I have changed my eating, don't drink red wine like I used to b/f Lyme meds so why can't I lose the 15 lbs I gained from being more sedentary over the past year. She suggested the cleanse. After reading the book, I wish I knew about it 4 yrs. ago when I suddenly got a BAD gallbladder attack. I was living in Puerto Rico for DH's job, had 2 little ones, no family around and after hearing I had a lot of stones from the radiologist, I hopped on the next flight to FL to go to my parents' house and got my gallbladder out ASAP. Same thing happened to my mom when she was around the same age. I thought that was my best option. Now after reading the book, I would have done the cleanse and waited on surgery. But it is what it is. I also wonder how many other issues over the years were attributed to stones--espophagitis, gastritis, skin conditions, IBS ,etc. I also figured from all the Lyme meds, a liver cleanse would be a good thing. Since I don't have a gallbladder, the nutritionist had me do the apple juice stage a little longer. She said a week longer. I didn't do it quite that long. I needed to make sure I ended the cleanse on a day that I had time to recover. Overall, I had a good experience. Today I had good energy. Not as much as yesterday but good enough to keep going all day and get on the treadmill b/f dinner. I also felt no bloating around my midsection! Good luck!

You're so close now to seeing Dr. Beals. Hang in there as hard as it may be. I know it's tough but I have a lot of faith Dr. Beals can help her. I really think Lyme needs to be addressed. He'll be great at that. Make sure you tell him how these psych drugs make her worse. I'm sure he'll want to tweak all of that. I agree w/ everything that other people posted on this thread. Good luck.

Just wondering if any adult Lyme sufferers have tried this. My nutritionist recommended it. It supposedly is good for anyone but especially those w/ chronic illness. I was concerned b/c I had my gall bladder removed 2 yrs. ago but she said it would still be great for me. I did it and man, did I feel the energy burst! I was a cleaning fool today. I was so focused and energized. I was doing laundry, changing sheets, scrubbing bathrooms, etc. Then when I was done, I went out shopping. Usually I am not energized or focused enough to do all that I did today. I am so afraid to lose the energy burst. I hope I still have it tomorrow!

@ pixiesmom--I posted the Dr. J info the other night but I also found the band descriptions I had saved. Here's the link to the Lyme board that has the info. It discusses Lyme symptoms, testing, tick info and then the bands. I didn't notice that the person cited where she got the info...seems like good info though. http://www.healingwell.com/community/default.aspx?f=30&m=1606610

Ditto! LLM--so true...all of it. Thanks!

I got a few request for Dr. J's explanation of Lyme results. Rather than scan and email my personal copy, I found he states it on his website. Here's the link http://sites.google.com/site/drjoneskids/lab-tests/tests-explained--dr-crist Check out the rest of his website. It's really informative!

@ Wilma-What did Scott say? Did he interpret it as Neg or say that you should investigate more? I agree w/ the moms on the forum. Glad u have the appt w/ Dr. Beals. Did u get my email w/ Dr. J's explanation of how he interprets Lyme tests? I think it's a great explanation. @Pixiesmom-I am pretty sure I have that list of explanations from a website saved on my laptop. I'll check.

I am in a rush so I didn't get to read all the other posts but my LLMD told me specifically to IGNORE the label that says take on an empty stomach. He told me to take w/ meals! He said I will feel terrible (queasy) if I don't. I got really sick one night when I took meds on an empty stomach.

@ Laure--You made a good point. I sing the praises of Rifampin but the kids started Rifampin and Diflucan simultaneously so maybe cutting the yeast made a big difference too. We don't know how much yeast was playing a role. Our LLMD felt the kids weren't suffering much from yeast b/c they had been on probiotics and their tongues didn't have a bad white coating...not a perfect assessment but he wanted to put kids on Diflucan for 2 reasons: 1) b/c of all the abx's and 2)b/c the cyst that the spirochete hides in in the cystic form of Lyme is made of the bacteria's excrement which happens to be yeast so it doesn't necessarily "cystbust" but helps inhibit cysts from forming. As far as Dr. individualizing treatment, it's hard to say. I am sure he treats according to the bugs plaguing each system. My kids have the same bugs so they are the same meds but my DS has a slightly lower dose of some since he's about 15 lbs less. For example, he's on 1/2 pill of Tindamax 2x/day 2 days/wk. @Philamom-Yes! Exactly. Dr. J doesn't address detox and supplements to the extent Dr. Beals does. Dr. J was happy to see the kids were on Omega 3's and Vit. D but he never talked about detox. I feel blessed to have 2 doctors who compliment each other as far as treatment so for now we're sticking w/ both. We don't buy all, just some supplements from Dr. Beals. The vit. D3 is by Xymogen. We're doing a little personal experiment in our house. DH says brand doesn't matter and is using Costco brand Vit. D3. I am using my organic raw food multi that has 6000 units and the kids are using the Xymogen and they getting some more in their multi vit. so we're going to see who levels increase the best. We realize other factors play a role but we're making it a fun contest. @Ifran--That list is basically all from Dr. Beals since we started w/ him in Nov. Dr. J got a copy of the meds/supplements the kids were on up to the point in Feb. when saw him. He was in agreement but had us increase the Rifampin that was only given 1x/day only on weekdays to everyday 2x/day. It made things even better! Both docs decided Feb. was time to add Tindamax. So overall they agree but Dr. Beals definitely seems to want to boost the immune system more. Dr. J said, How do you do that? The definition of infections means the immune system is compromised. Nail the infection, boost the immune system. We think he's great at attacking infections but like Dr. Beals' approach to detox and immune system boosting which we believe is helpful. There are some changes we have made that we'll keep lifelong even after we finish Lyme treatment.

I was scared to rock the boat and add Tindamax even though it made complete sense to add it in. I'm all about adding what meds work and even rocking the boat to get results but b/c Rifampin did so much to make things so much better, I was nervous for Tindamax. But Dr. J's approach is "slow and steady wins the race" w/ Tindamax. He says add it in 2 consecutive days/wk. We chose Sat. and Sun. so we can monitor the kids and if herxing is bad, it shouldn't interfere w/ too much missed school and I am happy to report that since last Dec. (Nov. started Rifampin and bad herxing, more missed school), neither child has missed school due to Lyme...only for important Dr. appts. Dr. J had the kids start Tindamax on a Sat. He said if no herx, continue the meds on Sun. But, we did see some anxiety, OCD and irrational thoughts stir up. Now I am talking nothing major. Nothing like we had lived w/ while only treating PANDAS or during Rifampin herx. But, w/ being so scared of losing our gains, I didn't give them Tindamax that Sun. We waited again till the next weekend. That weekend they did well on Sat. so they also took it Sun. We did the same thing this past weekend. I can say we noticed a little change. Like our little guy seems more impulsive. Again, nothing major. But moments where I am driving to Costo w/ the kids and wondering if my DS is ever going to be quiet! He just seems to interrupt more when he's on the Tindamax. Then I also try to remember that kids aren't perfect although I've always had very well behaved children. Things went haywire once PANDAS/Lyme hit so I try to always remind myself that kids will be kids and it isn't always a herx or Lyme causing impulsive behavior. But, at the same time, now that the kids are in such a better place, I can see Tindamax being the cause of some changes in behavior. From what I have learned, you need to add in a cystbuster in order to really lower the bacterial load so when it's time, just bite the bullet and hope for the best. At least my kids aren't herxing like me from Tindamax where I get very queasy when I start. I take it one week on and one week off. Oddly enough by day 6 or 7 of the Tindamax, I get this red/purple dotted rash on shins, thighs, stomach and parts of back and arms. Then it goes away in a few days.

I got to speak w/ Dr. J's office yesterday afternoon. Here's what I gathered from the conversation: So the Narcolepsy panel test is just a way of testing these HLA-D levels. Anyway, she said the kids don't have narcolepsy even though there are some positives on the results. What it does indicate is that something auto immune was caused by Lyme. I guess this is one of the patterns Dr. J sees in kids w/ Lyme and auto immune. So it just seems to be one more indication that Lyme and auto immune can go hand in hand. @Laure-I don't know your LLMD in Albany but I can tell you we went thru the same thing. My husband, kids and I see Dr. Beals in MD and he's fantastic. But when we wanted to really explore/rule out Lyme last fall, Dr. J was the one I we wanted the kids to see. But, we had a 4 month wait to get our 2 kids in there on the same day. My mommy insticts were in overdrive and I felt Lyme had to be addressed even though our immunologist repeatedly told us their Igenex was negative. In the meantime found Dr. B in MD and I can tell you, he really got our lives back on track. But when it came down to canceling w/ Dr. J, we just couldn't pass up seeing him. We wanted that expert advice from a pediatric specialist. And for as much $ as we spent that day, it was totally worth it to get his undivided attention for 4.5 hrs. As far as meds, I'll copy/paste my DD 9's (67lbs)latest excel spread sheet where I list her meds/supplements: Upon waking: Pectasol Chelation Complex--2 pills Morning: Amox TR-K CLV 500 mg--1 pill Azithromycin 250mg--1 pill Rifampin 300mg--1 pill organic raw food multivitamin--1 pill DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg Vit. D3 5000 units--1 pill Vit. C 500mg--1 pill Tindamax 250mg--1 pill (Sat & Sun. mornings) Midday: Probiotics 5 billion active cultures--1 pill (2 hrs away from abx & charcoal) Activated charcoal--2 pills (2 hrs away from all meds) Night(split into 2 parts--dinnertime & bedtime): Amox TR-K CLV 500 mg--1 pill Azithromycin 250mg--1 pill Rifampin 300mg--1 pill Diflucan 100mg--1 pill (every other night) DHA-Carlson for Kids--2 gel caps--Fish Oil=600mg,DHA=100mg, EPA=50mg organic raw food multivitamin--1 pill Vit. C 500mg--1 pill Milk Thistle 175mg--1 pill Low Dose Naltrexone 2mg--1pill Tindamax 250mg--1/2 pill (Sat & Sun. evenings) Probiotic Pearl 5 billion cultures--1 pill Tagamet 200mg--1 pill (as needed for stomach & histamine) *Bicillin shot monthly Epsom salt and hydrogen peroxide baths, ibuprofen 200mg or benadryl as needed for herxing...glad to say, these are not needed much

My two PANDAS/Lyme/Bartonella kiddos who see Dr. B in MD, finally got into see Dr. J a month ago for our 2nd opinion--we love Dr. B in MD but couldn't pass up an appt w/ a legend after such a horrific year. We want all the answers we can get--the good, the bad and the ugly. Dr. J had done more testing at the appt. Just hoping some of you can fill me on the Narcolepsy part of testing. I had gotten a list of important blood tests Dr. J likes to run. I remember seeing the HLA for Narcolepsy test and don't remember or never knew how that relates to Lyme. Then it slipped my mind at appt as to whether he'd do that test and why. Both DD and DS "have the HLA haplotype associated w/ Narcolepsy (HLA-DR15, DQA1*0102, DQB1*0602)". So with these 3 things positive, I am curious to know what it means, how it relates to Lyme, if it does at all and/or what the significance is of testing for it. I thought I heard he tests some things other doctors don't b/c he sees certain trends w/ children w/ LD...for example--something about cholesterol ratios too. So if you have any info, I'd love to hear it. Interestingly enough my DD's band 31 converted from neg. to IND. Dr. J, suspected both kids could convert to a positive on bands 31 and 34 since they can cause/indicate autoimmune disease, hence where PANDAS could be playing a role??? Maybe next time, it will be positive??? Has this happened to anyone? On a good note their Vit. D went from low 20s to around 70 within 3 months of Vit. D3 supplements. Overall they are doing so much better since attacking Lyme and Bartonella! My DD's teacher is amazed at the changes. I explained how when she met her in Sept. we only knew to report/explain PANDAS and that we never knew how truly sick she was. We did explain the kids' LD dx to the school when it came about but still, people don't really get it unless they live it. But either way, the teacher is thrilled to be see this new child emerge. To us it's the same child we always knew and just happened to lose in this nasty abyss called LD and PANDAS in '09. Thanks God for this forum full of determined/smart/caring parents. Without them, I don't know where I'd get such great advice and doctor recommendations. Thanks from the bottom of my heart!

My kids were already on Augmentin and Azith for PANDAS. When Lyme and Bartonella was finally discovered in Nov. 2010, our LLMD added Rifampin into the mix. Wow!!! What a difference! The kids definitely herxed the 1st 2 weeks or so. We went backwards for sure. But then great things started to happen. OCD started to diminish. All symptoms started to retreat and we started getting back to how life was before all this mess. Mid Feb. we saw Dr. J as a 2nd opinion. He and our other LLMD are basically on the same page but Dr. J did up the Rifampin a bit. The kids were only taking it on weekdays at night. He suggested they take it AM and PM AND on weekends. He feels if you don't target Bartonella full force, the bugs become resistant. I have to say, it made things EVEN better! Again there was a more minor adjustment period (herx) but nothing major. Both LLMD's thought it was time to add Tindamax into the mix last month. We are introducing it slowly...just on weekends. We were on a dead end to nowhere on PANDAS treatment alone. Our LLMDs have made all the difference. Oh and yes, the Rifampin does turn urine reddish orange. Not all day, mainly first urination of the day. When my kids 1st got the Rx, it was liquid and very red...looks like it would stain clothing for sure. We switched to pills then. Still same urination effect. I haven't noticed their tears or sweat discolored though. For us, Rifampin has been a turning point in their treatment.

Wow! Glad to see Canada is spreading the word on their news stations. That was very moving. Thanks!