laure

My daughter had lots of stomach upst with antibiotics and organic Tumeric which I just put into a gelcap helped a lot. The doctor said it helps with inflammation. Now that my daughter is off the antibiotics she is taking Welchol and 1 to 6 tablets a day with Nordic Naturals Pro-DHA & Pro-EFA 1000mg 2x per day and Alpha Limpoic Acid 100mg 1 x per day. We are supposed to be up to 6 tablets of Welchol but she is having such good results after 1 tablet per day for a month we might not increase the dosage. The Welchol is supposed to decrease toxins in her body from die-off and Mold. So many ideas - thanks everyone! I wonder if I should just throw some of this stuff at her, or should I be more methodical? Are there any drawbacks? Yesterday I successfully snuck a couple of drops of Burbur in her milk on two occasions...no obvious change yet, but I know we need to go much higher.

We use Saccromyces Boulardi preventatively, and my daughter has hung in with mepron, zithromax, and cefdinar, as well as tindamax most recently. How much do you give your daughter? She is taking 5 pills two times a day, and also 280 billion 15-35 probiotic at bedtime. No idea if that is enough, I came up with it on my own.

I have Burbur and Milk Thistle in my cabinet...just hadn't gotten around to figuring out what they were supposed to help with yet...sometimes overwhelmed with information here! She is on daily tindamax now, when it was just weekends it wasn't so bad, but really ramped up when she moved to everyday. I wish I understood this OCD stuff, but I do believe it is related to brain inflammation in her case, because it can swing wildly from horrible to non-existent, or non-existent to horrible in a matter of a few days. For example, one day none of us can touch the cabinet handle for the trash can, the next it's ok as long as she isn't looking, and the third day she doesn't care at all. Or vice versa. Usually when she is trending better or worse, it lasts for several weeks or months. What would cause this?

Good idea! She definitely will spend as long as possible in the sauna after swimming in our local college pool. Definitely does not mind sweating! Thanks!

I'm looking for detox methods that have worked for others. My daughter is showing a big increase in contamination OCD fears since beginning with tindamax in late October. Prior to that she was functioning at above 90%, and while she is still doing great in some ways, the OCD is at times controlling all of our lives. We currently use renelix and APO-hepat for detox, but she cannot take baths because she believes the tub is contaminated, and her doctor doesn't really like bentonite clay because he believes it interferes with the antibiotics even if we space it apart. She gets lots of exercise, and fluids no problem since it takes so much to get down all the meds... any other ideas out there?

Hi Yanni, Sorry to hear about your problems. Perhaps this has been done, but have you had him tested for lyme disease? Lyme is known for causing a "herx" every 4 weeks in many people, I think it has to do with cycles of the spirochetes. My daughter age 11 was also a PANDAS kid until Igenex tests came back positive for lyme, bartonella, and then she was later diagnosed with babesia. Coinfections common with tick bites. Since being treated aggressively for lyme, she has made huge strides. We narrowly avoided IVIG and PEX, stumbling onto this diagnosis just in time. Before that she did test high for anti dnase B titers, but we now know that her PANDAS was not clearing due to lyme underlying. So, just thought you might look into that further, or again if it has been awhile.

Lismom, What causes the fainting, do you know? Thanks!

Experts out there, please chime in. Friend's son 11, history of being oppositional and frequently fatigued, but very bright and quite capable physically when he is up for it. Frequent strep infections all his life. Last year doctor put him on ritalin for impulsive and oppositional behavioral issues. Some improvement. Then November overnight onset of facial and shoulder tics, during some episodes he would pass out. Rush to hospital, who diagnosed tourettes. New doctor (neurologist) in Boston thinks fainting is psychosomatic during a tic episode. PANDAS or Lyme has not been explored. This boy is an outdoor boy who visits Cape Cod, Westchester County, South Carolina, and lives in the woods in the Northeast. Plenty of tick bites in his past, including one this past summer which became infected and he was put on 10 days of augmentin. I have lobbied a bit to check for lyme, but who am I compared to Boston's Children's docs?! Has anyone else experienced fainting spells during tic episodes?

This discussion really saddens me. For our dd10, we did initially try to get her to fight the OCD, bought all the books, went to a counselor, etc. All that came of it was a lot of anger and tears. She also lost confidence in herself and felt like there was something wrong with her. Fortunately we had some good advice from others who had gone through treatment using abx alone, and decided to back off on the CBT. It was a lot easier just loving her and letting her know it was not her fault, and letting her just get through the day as best as she could. In this way she was able to attend school last year, and continue with sports and music lessons, although we cut back a bit because of the stress of it all, with contamination OCD taking a lot of her time and energy. After the proper abx and treatment, (and diagnosing lyme/bartonella/babesia was huge in adjusting these things), her OCD literally evaporated as fast as it began. Now we talk about it and she says, "I don't know what it was about "x" but it just doesn't bother me anymore." My take on it is, this is an infection, and we need to treat it like one. You wouldn't ask a person with pneumonia to stop coughing. Sorry if I am sounding too strong, but we barked up the wrong tree for a long time, and it hurt.

I LOVE that Momcap! We have had similar discussions, and my dd10's confidence has really grown through this, because she really does see huge improvement in school/reading/focus/sports/music since treating aggressively for PANDAS then lyme/bartonella/babesia. She now says that she knows she will be "even smarter" when the doctor finally tells her that everything is cleared up. So a little medical information is probably not TMI but perhaps a good thing, because they can blame the disease and not doubt their own abilities.

We've been using daily at full strength for dd10, who is 92 pounds. Definitely does not do any harm. LLMD thought no problem either. Tough to say if it makes a huge difference since she is doing so well right now anyway, but before we began I was thinking about prescription mood enhancers, then read about the benefits of inositol. I would give it a whirl!

Dd10 testing with elevated alkaline phosphatate. Doc says probably not caused by new addition of tindamax 2 days a week. Internet has all kinds of various causes... she is almost 11 and tall/muscular for her age, definitely approaching puberty, so perhaps that is the cause? Not sure what the treatment is though. Hate to think of going off all those helpful abx.

Hey that was a great show Amy, watched it online the next day! So glad you helped to get the word out, and yes, I agree, doctors and parents just need to know to CONSIDER the possibility that a condition that resembles a psychological or psychiatric illness may very well just be an infection, curable with antibiotics. Huge strides in that direction, thank you so much!

YES we certainly do have a lot to be thankful for Amy! I will definitely watch that story...will it be on PANDAS, lyme, or both? I really think the parents in CNY need to be aware of lyme disease in our area and how rampant it is becoming. Certainly our docs at Bassett Health Care had no idea. I shudder to think how many kids are affected. Happy holidays and enjoy that healthy girl!!!

PM ing you Christy.

No, she was scheduled for IVIG twice, but I canceled because she improved so much after seeing the ART doctor, even after just the first visit. So glad now. Also, I don't trust the blood supply, because I have read that babesia is in it. Don't need to keep re-infecting with that. So I had too much doubt about that as the only solution for her, although I would have done it if the ART was unsuccessful. I will say that my daughter was never sickly, always a robust, healthy child, so other than the neuro-psych symptoms, there was nothing physical telling me that her immune system really needed "re-booting" as the docs sometimes refer to IVIG as. CBT also was not necessary, although lots of folks suggested it to me. Once the treatment took hold, all of those anxieties and behaviors just slipped away. I asked her about it once, the conversation went like this: "Sophie, did you just turn off the faucet without using your sleeve?" "Mom, I have been doing that for awhile." Me: "How did that happen?" Her: "I don't know, accidentally one time I just did it, and then I realized it didn't make me feel uncomfortable anymore."

Hi Pandas16, I beg to differ. See my recent post on "Continued progress". Of course, time will tell... My doctor takes insurance, not sure about others - $20 copay is my cost.

My Dd 10, the baby of the family, siblings 20 and 18. Normal enough through toddler years, she first became oppositional (spoiled according to family members) then began to seem ADHD, and by age 7 had some OCD contamination stuff, mainly toilets and public bathrooms. Again, we concluded allergies, possible hypoglycemia, some genetic history, grandfather OCD, Mom a little hyperactive, etc. Then overnight PANDAS explosion July 2010. Hopping on one foot, showering 8-10 times a day, or not at all for weeks at a time, can't bring school stuff home or home stuff to school, can't play with any toys, we can't touch her, etc. Anti dNase B titers high, strep just a little high. Local doc gave short course of abx, saw improvement right away, but then huge backsliding in August. Got appt with Dr B, who again rescued her with abx in Sept 2010, but also he found lyme bands via Igenex in Nov. He said she had lyme for over a year prior. Moved on to lyme doc from December through May 2011, (Dr. J) but no improvement, and then PEX/ Ivig became the only solution according to both these docs. Once again moved on to ART doc used by some on these forums, who clinically diagnosed bartonella, babesia, ehrlichiosis, rickettsia, XMRV, borrelia (we were shocked, she was still sort of functioning). Now 5 months later, after very aggressive abx and herbal medicine, we have a child that we do not know. Not only happy, but popular with friends, cooperative, studious, motivated. Brought home her first 100 on a math test yesterday, (high math group in school), was asked to play on the boys soccer team, reading again (she hadn't read in nearly a year). I know there are huge debates re: PANDAS or Lyme... The docs know she had lyme. We know she reacts PANDAS-like to strep/allergies/colds with increased OCD. But getting after the lyme has reduced all of the PANDAS symptoms, while the reverse was not true.

In answer to your question John, she tested for ehrlichiosis, rickettsia, and XMRV, in addition to borrelia, babesia, and bartonella. There was one more fungus, but I cannot remember if I ever got the name. There have been a huge range of treatments from current doctor, and he switches them slightly each visit, but he uses artemisinen, samento, noni, mundipur, renelix, apo-hepat, (the last 3 for detox) and abx include mepron, zithromax, and omnicef, and there have been other herbal things as well, just cannot remember them all right now... Not all at once, and alternating some during the week. Way too complex to do on your own, I would say... can't believe I used to get this info, buy online, and shoot in the dark, but those were desperate times.

To clarify, she was diagnosed in early November 2010 with lyme, but the treatment did not include herbal or detox remedies for viral and fungal infections, or mepron for babesia, which did not show up on original bloodwork. Her current doctor says that those viral and fungal infections were interfering with the abx ability to really attack lyme and coinfections. After 8 weeks of treatment for those, everything began to click into place, and all of the defiance, depression, and OCD just disappeared little by little. We never did any CBT or anything like that, although considered it...as she got better, faucets, doorknobs, public bathrooms, etc. all became "ok" again.

Hi All, I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness. Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing. Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet. Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon! Laura

Hi All, I hesitate to post, because I know so many are struggling. We were there this time last year, in fact, November was the turning point when PANDAS became correctly diagnosed as Lyme for my Dd 10. Now after nearly 5 months of targeted treatment for lyme, co-infections, and addressing viruses and funguses, my child is a new person. So I feel it is important to let folks know to KEEP PUSHING for that person, who still exists under the layers of terrible illness. Last night my daughter completed a complicated 2 week-long biome project, (board game she invented with 48 researched facts about the 6 biomes). She did this all alone, no help from us. Last year she could not read a paragraph (she could read, just couldn't focus on even the simplest of assignments). Some days she couldn't go to school, couldn't get out of the shower, couldn't wear shoes, couldn't come in the house. As recently as last June she had to shower after school before she could do anything, and couldn't shower at home, had to come to my workplace so as not to infect the house...backpack couldn't come in the house, school assignemts or books couldn't come home, etc. etc. etc. Even eating utensils touching the sides of her mouth was (horrifyingly) becoming an issue. It was a heart-wrenching, horrible time. We yelled at her all the time, she yelled back. We all cried all the time. All of that is so in the past now, amazing. Currently she is still being treated for lyme, babesia, and bartonella...just recently began tindamax for cyst-busting and boluoke for biofilms, no serious herxing. She is a little tired and itchy all over and achey on tindamax days, but that is all. Didn't stop her from two hockey games this weekend and a couple of goals! Although we are still in treatment and will continue for at least another 4 months, I am confident that someday antibiotics will be gone from our medicine cabinet. Anyway...as you can imagine, all is right with the world when your child is healthy. Continued prayers for all the suffering families out there. May you find health and peace soon! Laura

OK, how do I clear out my mailbox...anyone?