laure

Thanks for that explanation LLM. Very different procedures, and sounds a little traumatic from the child's perspective. As crazy as our life is, my child is physically and mentally high-achieving. So as much as we want a solution, both procedures sound like a risk, more than we need to take right now. I would be interested to hear experiences from any others who had kids functioning at a pretty high level (not counting the 6 showers a day, hands constantly balled into fists, constant surveillance about who touches what, constant hand washing and ordering us to wash our hands, and inability to be touched by us, etc. etc.) We are pre-approved for IVIG. Our insurance would probably cover about 80%. Not sure about PEX expense or if/what our insurance would cover.

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con. Dr. J has spoken about PEX...can you explain the difference from a treatment perspective?

Well it feels good to know we aren't an anomaly here, even though it shakes my confidence to know there are others not achieving health who are following the same protocol as we are. So IVIG question - we are not mentally ready to subject her to that yet....but a month ago or so there was a long thread of folks who had success with IVIG. Complete success, never to return to the doctor. I think... Any posters out there who can confirm? I guess I'm thinking that if we could get her titers down, the OCD would calm down, even as we continue to treat for lyme.

Wow, this post is awesome, thanks so much all for giving so much info! I also posted today, "OCD getting worse by the week", but this post has so many examples, hopefully we will get to the end like some of you have. Glad to have some cyber-support!

You are not alone. My son has never "herxed" by the classical definition. Sounds same as what you are experiencing. My son did test positive for Bartonella and doc. associates raging and OCD with Bartonella. His OCD continued to get worse from December right until - recently. Not sure if he's really getting better or the threats of sending him off to Wisconsin this summer (Rogers Institute) have finally caught his attention. Everything is so low and slow we can not tell the difference between changes and well, just changes. bill Oh dear...it sounds like our kids are similar! Except when my daughter first began the aug/zith combo, overnight she lost so many OCD behaviors, got all her dolls out of the closet, could wash her hair again (it was absolutely disgusting, going about 3 weeks between showers, never brushed), brush her teeth, etc. Now she is slipping slipping back to that place, except instead of never showering she showers 6 times a day at least. Plus LOTS of other issues. Amazingly she is still going to school.

She started lyme treatment Dec. 1 and immediately improved to about 80%. It was glorious! We changed nothing, but in mid-Feb she began a slow steady decline and relapse of all OCD symptoms. April 1 she began treatment for bartonella per Dr. J. No change at all, just keeps declining at the same rate. In March Dr. B ran titers which came back about 250 ASO and 978 anti Dnase B. Higher than ever before. No strep anywhere in the family though. So almost 3 months now of slow steady decline, despite changing abx, steroid burst, probiotics, detox, etc. etc.

I would advocate for honors. Sometimes guidance counselors and teachers make the decision more on perceived maturity rather than academic ability and innate intelligence. My son was left out of Latin in 7th grade for that reason...I had to force the issue. It was an uphill battle with the admins, but they yielded... He spent his senior year of high school in a total immersion program in France, is now fluent in French and halfway there in Italian. My point is that you know your child and what she can achieve. She obviously takes pride in her academic abilities. It probably gives her confidence knowing that she is a smart kid, even in the face of all this. Worse case scenario you could always home-school or bring in a tutor...she'd learn the same material in about 1/3 of the time.

I do think it would be a lot easier if we saw Dr. Jones more often. But his assistants are pretty available by phone and will spend a while speaking with me, then with him, then getting back to me. In the end, if I opt for treatment of one type of another, I feel the docs will go along with it. Almost wish they were more opinionated... I am very close to pulling her off everything and giving her a break - see if she improves, etc. How long would you think we would need to steer clear of the antibiotics? But keep up with the clay and probiotics? Jodie, any opinion?

The bactrim is supposed to be treating bartonella, although it is just a clinical diagnosis by Dr. J. He suspects bartonella I think because of the OCD presentation. She actually has not tested positive for a co-infection on Igenex yet, just Bb. Follow-up is not until late July. We had a honeymoon from the OCD throughout most of December and January.

Dr. B put her on 6 days steroids two weeks ago, 30 mg. once a day. They did not budge her! Then he switched her abx the following week, thinking she might have developed resistance to the augmentin. Also still on zithromax, tindamax on weekends, bactrim. No clue here!!!

OK, so how long until we see any light? Because right now we are on a steady decline since mid-Feb, saw Dr. Jones late March and added Bactrim to abx cocktail, still slow steady decline. Does not sound like any herxes I read about here, just day by day more OCD issues, all contamination. I soooo wish it did sound like a herx, believe it or not. No tics, no aches or pains, no fatigue (quite the opposite), no rages, no anxiety, no skin stuff, no headaches. No one in the house is sick (ever). Last week Dr B changed Augmentin to Vancomycin, still same. Still declining. Nothing better. Not a thing. No sense in keeping a log, it would read the same every day with a new line, "slightly more OCD issues." Really??? We do detox, probiotics, etc. I can plow on, as we have since mid-Feb ...but our house/family is in a tailspin here, holding breath all the time.

Hi Darlene, We surely are on the same path. Wonder how many others from the north country? I have been out of town last 3 days, but my husband says she is doing a little better tonight. Does anyone here know if the dosage for the steroids is an absolute? Because Dr. B was very precise that 3 pills once a day is what we should do (first thing with breakfast) although we have had an easier time in the past with one pill 3 x a day. Why does it matter?

thanks for all of these suggestions Wendy. Can definitely double up on the detox. No Ivig mentioned, although that has been discussed in the past. She is pre-approved through BCBS for a year. We would rather wait until that is a later resort. Thanks for the reminder about documenting - with all the pill counting, I forget to write stuff down.

I'll check out that link, thanks. She takes supplements which include alpha lipoic acid and COQ10. We can double up on the clay, she is great with pills.

Augmentin, Bactrim, Tindamax, Zithromax. Augmentin for 3 weeks always helps me personally with sinus infections, and a steroid nasal spray. But I am not positive for lyme, at least that I know of.

Thanks for your perspective Laura, and I welcome the differing opinions. I figured we'd get many of these. Who knows the right thing to do, but all I know is it was going downhill fast, and school was probably not going to be an option within a few days...she can't wear shoes, can't use her hands, (dropped a glass of milk trying to carry it in her fists last week), and can't bring books home or to school. So we all needed a change of some sort. Other advisors on this forum were suggesting don't change abx yet, too soon. So this was other option, and in any case, the sinus thing seemed a real possibility. For detox we do 10 bentonite clay pills daily, burbur drops twice daily, olive leaf extract daily. Lots of exercise and lots of fluids. She takes 3 hot showers a day. Any other suggestions I'll take! Oh, and I should also mention that her titers were up a lot: ASO was up to 240 from 130, and anti Dnase B up to 978. These have always had huge correlation with OCD for her.

Thanks for your perspective Laura, and I welcome the differing opinions. I figured we'd get many of these. Who knows the right thing to do, but all I know is it was going downhill fast, and school was probably not going to be an option within a few days...she can't wear shoes, can't use her hands, (dropped a glass of milk trying to carry it in her fists last week), and can't bring books home or to school. So we all needed a change of some sort. Other advisors on this forum were suggesting don't change abx yet, too soon. So this was other option, and in any case, the sinus thing seemed a real possibility. For detox we do 10 bentonite clay pills daily, burbur drops twice daily, olive leaf extract daily. Lots of exercise and lots of fluids. She takes 3 hot showers a day. Any other suggestions I'll take!

Thanks, we love Dr. B. He also gave advice for my son , (at college) who has sinus issues. On allergy drops, which Dr. B believes don't work, said he should be taking shots instead. We were hoping to avoid that, but after 2 years, his allergies really haven't improved that much. No other issues thank God!

Thanks for that reassuring info Momaine. As you may know, we also see Dr. J. I guess I need to listen to her complaints more. It's sometimes tough to know what symptoms are caused by 1. the abx, 2. a herx, or 3. a new infection. Someday I will figure it all out. Glad her abx weren't changed up, although it was discussed, b/c she has only been on this combo for 3.5 weeks, and we really need to see if this is all a herx. Dr. B puzzled over it for awhile. Then decided to stay the course for now. She is off to school this morning, albeit with a headache, but luckily she loves school.

Returned from visit to Dr. B yesterday. After 5 months lyme treatment, excellent results for first 2 months, stalled for next 2, serious backsliding all of April. She was licking both hands continuously the entire 4 hour car trip, paced around and around the table during the 1 hour waiting room time, (felt sorry for the other patients), tons and tons of OCD contamination stuff all back, plus new OCD behaviors. So Dr. B looked and listened and determined that she has a chronic sinus infection, probably has had it for 2 months or more from our description. My fault I guess, she never really seems sick, but we did give her dimetapp and sudafed for about 5 days back in early March. He said her nasal passages are too small for drainage, and strep likely blocked in there, all the (4!!) abx she is on can't help her if her sinuses won't drain. She has complained of a few headaches from time to time, and eye pain, and also that her ears felt "blocked". Although we talked about steroids not being great with lyme, he said that is the only option to treat the strep in her sinuses right now...so she is on a 6 day course, plus steroid mist and Mucinex. The crazies started last night, which always happens with steroids for us. Closest thing to a "herx" we ever experienced. Calling him back on Monday for follow-up discussion.

I sneak in and put Eucerin cream on my daughter's hands after she is asleep. Keeps them from actually bleeding, as much as she washes them.

Great thread! Makes you think about both sides, both diseases. What made me think lyme? Some really caring folks on this forum. THANKS to those folks for going on the PANDAS forum and finding suffering Newbies like we were! My daughter has lyme, we know that for certain from her tests. Does she have PANDAS? Maybe...we will keep seeing both docs until she is resolved. What parent here would not want all of the information? These diseases are both in states of ongoing research/investigation/study. Even the docs are admittedly still learning. The sharing of information is a good thing. The opinions are optional.

Yay Wilma! You will wait in the office 30 min to 1 hour. Then when you see him it will take 30 - 45 min. He is interrupted a lot, but always comes back to you. He is very kind, gentle, sweet. Your kids will like him, but he also will mostly talk with you, examine them for 5 minutes or so. He will look at all tests, and order new ones. He will give you scripts. If you can, bring along your husband/mom/friend to help, because there is a lot of info very quickly, and you will want notes. The Doubletree has rates of $89 if you are his patient, so call Stella and they will get you the code for that rate. We also usually fill scripts at the drugstore in the plaza nearby, and start them right away. We often see a reaction by the time we get home (5 hours). If you are going to the Darien office, there is a great deli across the street...something to look forward to anyway! We take our daughter shopping at Old Navy nearby after visits. She gets a new outfit (or sometimes 3!) Yes, it is an expensive day! Good luck, I know you will come away with some guidance!

Hi Darlene, Same same and same here! Bactrim added post Dr. J visit. OCD returned big time, we're 2 1/2 weeks out now...but she was on the decline before our visit, this is just about three times as bad. One thing I can say is we are doing lots of detox, and she is a pleasant relatively happy OCD kid. We are not fighting her OCD at all either though, so those battles are not happening. We do 10 bentonite clay caps after school, 10 BurBur drops morning and night, and just started Olive Leaf Extract for yeast. Also give one advil in the morning or whenever she is unbearable. Some people swear by 5HTP, but this is in her multi-vitamin. This is all just shot in the dark stuff from this forum, but her mood is great, and not too much struggling with depression, frustration, just lots of hand washing and not touching stuff, not letting us touch stuff, etc. We are going to tough it out and see what happens...SF mom says up to 12 weeks. We also see Dr. B on Tuesday, so see if he changes the zith or Augmentin. I'll let you know. Hang in there! Laura

Amy, This sounds like it could be a herx. Dr. B did same for us (switched to Augmentin from zith), and we had major very scary herxing, return to old behaviors within 12 hours! In the end Dr. B added the zith back in along with the Augmentin. She was a new person inside of 3 days. I would take both for the weekend, and then call them first thing Monday. My guess is he would do that anyway.