laure

What do folks think about #5? I know some docs believe to wait to use cyst busting drugs until the end of treatment. Our doc is having dd10 use it now, and she has been on tindamax since first diagnosis in December. Of course, she was on abx for 4 months prior to that.

Apply a thick gob of Emla cream, don't rub it in. Cover it with a really large band-aid and try not to smush the cream out the sides. You could do both arms to be on the safe side. 1 hour is recommended, but 30 minutes works pretty well too. Try to cover at least 2 inches, and cover the vein if you can see it.

Oh Yay! Great news Wilma! So happy for any improvement for you!

Not to mention the mercury component...see books by Kenneth Boch with lots of info on that issue.

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!!! Hi Laure, My twins b/g both present with typical pandas symptoms. My son started with more severe ocd than my daughter but looks like she's catching up to him. The ocd is unbearable. We have tried so many antibiotics which have helped with certain things but the ocd is still there and getting worse. My daughter tested positive for lyme so we also are patients of Dr. J. My son never tested positive but clinically being treated for bartonella. We were on Omnicef, tindamax, rifampin and azith. I saw no improvements whatsoever. Whenever I would email symptoms and complaints I was told it was herxing. We began treatment 2/24 and then May 2 I took my son to the e.r. because he looked so ill and had a very deep cough. i felt it was mycoplasma because aside from numerous strep infections he has a problem with mycoplasma. may 3rd I took both kids off of all the meds and they are on cipro for 10 days. The labwork in hospital showed he was positive for strep even after being on all those medications that Dr. J had him take. His aso was 200 on 5/2/11, we ran blood work again on May 10 and aso went down to 100. Cipro is a strong antibiotic and can also be used to treat bartonella. We did IVIG last wed so I am seeing a worsening of symptoms now. But I am so frustrated all these years all the meds, the IVIG and still in ######. I wish I had the answers. ALl I can say is hang in there. Wow, that is pretty scary! How many Ivigs have you done? Dr. J wants her vancomycin increased to 3 x a day, so have to call Dr. B on that since he prescribed it. That is also supposed to be a pretty aggressive abx. I spent awhile on the phone with Dr. J's assistant last night, and they want us to stay the course,(vanco, tindamax, bactrim, zith) consider PEX, and have a follow-up end of Juner (bumped it up a month). I really wanted to take a break from all abx, (started to go that route yesterday) but dh was afraid to do that with brother home from college with pink eye and a lot of red bumps on his throat. So we have to wait till he returns in a week...We see Dr. B May 31st, so I will be interested in what he has to say about this kid's immunity and how she has strep on all these abx - how does that happen???

Oh she has allergies, certainly. I have hundreds, brother takes shots, we all take a variety of allergy meds from over the counter to prescription to shots. Do you think she can take claritin at the same time as all this other stuff ...why not I guess, never thought of it. good suggestion. Got off the phone with Dr. J's assistant ... he really wants her to stay the course, and go for PEX too. dh doesn't want to risk going off right now b/c son is home from college with pink eye and something red and painful going on in his throat - I have to agree, the timing would be dumb. When son goes back next week we might try to go off everything... Thanks for hanging in there with me!

Yup, PANDAS doc won't overrule lyme doc. Which is probably as it should be. If the lyme doc doesn't get back, I wouldn't add the tindamax in until she settles down. One week won't make a big differenct.

I feel so much for you. We've had very similar experiences with contamination as well as the talks of dying, wishing she weren't alive. She even asked my dh to kill her. I'm so sorry for what you are going through. I'm wondering about the betonite clay and when you are giving it to her relative to the abx. I've never used the betonite clay. It's supposed to help with detox, right? Is it a binding agent, like charcoal? If it is, then I believe it should not be given close in time to the abx. Our LLMD said not to give the charcoal close in time to the abx or it would just negate the effects of the abx, by binding to them and eliminating the abx from the body. Maybe this is a question to ask your do (or maybe others here can chime in.) Kara I am giving her clay right after school, minimum of 2 hours before dinner time abx. It is like charcoal. Last night at 4AM when I woke worrying, worrying, (like you all have I'm sure) I had the thought that I also would like to die along with her, ...my husband can adequately finish the job of raising our older two... then I tried to pray for awhile, then woke this morning with some sanity back. No worries out there, just stream of consciousness venting. Sorry so morbid, the rain in NE is not helping the mood! Thanks for all the support everyone! Laura

Would you break from probiotics, herbal stuff, clay too?

what do you mean -- dr b and/or dr j listen to the ART diagnosis? i think you have to understand that they are different ways of approaching medicine -- so you're asking dr's who have worked in one mind set to accept another. i think the most to hope for is that they are open to investigating what you may say you have found through ART. i don't know that they would or even that i feel i would expect them to treat in their manners what you say was discovered in an ART diagnosis, unless they then find evidence of it in their terms. it's difficult to try to walk the line between traditional and alternative/complementary medicine -- i've been trying for 2.5 years since pandas diagnosis. i do feel fortunate currently that i think we have found some open-minded helpful people that work in line with their beliefs and experience AND are open to what i have to say about my experience/research AND to entertain ideas other than their own experience. however, they will not treat based on something other than their philosophies. that's where it comes in that i have to make the decisions about what path to follow. but, i don't know that it's really that different than any one else on this board navigating these unknown waters. our experience -- when ds6 was first diagnosed through ART, i called ped office asking for consult -- asst told me procedure of dr's notes, etc, etc, etc. i decided it wasn't worth the hassle, time, money b/c i was going to follow ART based treatment anyway. at ped appt. a few months later (consult for extreme ocd non eating that i believe was herx but needed ped in case ds ended up in hospital for IV hydration) -- ped told me that wasn't really all necessary and he would have had me come in for office visit and discussed it all. even before that, we have discussed that we are using homeopathy (ped is from india, homeopathy is part of medical training - for familiarity, not so much training in it -, his mother had been into homeopathy, his treatment path has gotten much more traditional than when he began medicine ). he is clear that he is open-minded about my choices but will give me opinions/treatments based on his expertise due to his experience. ds9 -- diagnosed first by ART for all TBI, strep. was having physical symptoms, most serious of shortness of breath and poor endurance. i did consult with ped even though was planning on following ART treatment plan but wanted to be sure about other possible causes. did blood work, EKG, chest x-ray, expensive echocardiogram. all neg. basically, shoulder shrug from traditional medicine (i don't have blame, think is what most would find). about 5 mths into treatment, most of ds's issues have resolved. i don't have experience with dr j or dr b, but think they would have to do their own tests to then treat. but if you asked for investigation of something, say CMV or HHV, it seems they should do it. other note -- someone asked you about bentonite -- i was on treatment for bartonella for 4 mths. i added small amt of bentonite and shortly after got small bartonella rash that lasted a few days. at same time, migraine (that i have history of) were frequent and intense. this lasted for a few months. related? possibly. good luck! I see your point, I'm sure you are right. We just need to believe in a path...and right now that is difficult. Tried to move up our ART appt, from June, but no openings, unfortunately. I am back to calling Dr. J's office to beg for options, perhaps a follow-up SOON.

Interesting idea, thanks for that...but in my medicine cabinet - quite large I must say - I only have augmentin, keflex, vancomycin, zithromax, bactrim, and tindamax. think one of those are strong on strep?

So confused, we could go off everything for a couple of days, it certainly cannot hurt things, but with strep in the mix it really cannot help either, can it? I can alert Dr. B but he will probably go for steroids and a new abx. Dr. J wants increased Vanco, (3 x 250 mg /day instead of the 2x she is on now) as of last week, but I haven't spoken to him this week yet. Want to see ART doc, but will any of these docs listen to that diagnosis?

Bactrim was prescribed for suspected bartonella. Not sure if it crosses the BBB but the zith she is on does for sure. Not sure if she is worse in symptoms since probiotics and detox...I have been increasing those all along from info on this forum since January. Do you think that could make things worse? What exactly would consitute drainage? She won't take baths or put on deoderant or patches or anything like that.

Dr. J did draw blood for the Cunningham test in late March. I don't think they have gotten to her sample yet. Not sure though, but I heard Cunningham was pretty backed up. I am afraid PEX would just reset her immunity, and then it would become reinfected with lyme in a matter of weeks...but I don't have a great understanding of it. Lyme is not a question mark in Dr. B or Dr. J's minds based on Igenex results.

Really, really struggling here...dd10 in tears several times a day now because she realizes she can't do all the things her friends can do. Her OCD getting worse by the day, and last night we "treated" the family to dinner at a Japanese Steak House, only to have her dissolve in tears as multiple people touched our plates and we all continued to eat off them. She was so humiliated by her tears and crazed by contamination all at the same time. I am at a total loss, as are our doctors, as to why her ASO is over 250 and antiDNase B titers at 978 while on 4 abx. Dr. B. switched her to Vancomycin 2 weeks ago from Augmentin, to no avail. Still on Zith and Bactrim per Dr. J. I discontinued the Tindamax this weekend - no change. Doing 400 billion probiotics a day and 20 bentonite clay pills a day. She is a trooper about taking pills. Last night she talked about wanting to die, it was heart breaking. Hasn't been this way since November. In a way two doctors makes it more confusing because Dr. J treating for lyme and Dr. B. treating for strep. All the while she has no outward strep symptoms, and no one sick in the family. She cannot hold anything in her hands, bring anything home from school, touch any handles, remotes, computer keys, books, papers, toys, her bike, and even get in the pool at the hotel we stayed at. All she can do is shower many times a day (average 6-8). What would you do?

Thanks for that reinforcement! She's traveling with me this weekend and we are in hotel in Princeton, which, fortunately, has unlimited towels and hot water!

That's what I assumed too, but I'm not sure anymore. On Monday two weeks ago (5/2), we stopped omnicef for 4 days. Re-started on Friday (5/6) but didn't do tindamax last weekend (5/6-5/8)(125 mg for 65lb, fri pm, Sat am/pm and Sun am). It wasn't until this Wed (5/11) (10 days after last tindamax and 5 days after our omnicef break) that I saw things definitely calming down. The thinking on doing a weekend pulse is that you'll see herxing on Sat/Sun and maybe Mon/Tue then have a good rest of the week. But I think for my DS, it just wasn't clearing fast enough and we were in perpetual herx between omnicef and tinda. I think we'll stay off tindamax for a few weekends and let DS enjoy the end of school, then re-start in mid-June. When we re-start, I may ask about only doing two doses at start of week (Mon) so that we have a better shot at good family weekends for the summer. Then maybe add in additional doses based on reactions. I think I see that tindamax is certainly needed (DS has been on some sort of abx for 2+ yrs) so I'm sure there's lots of cyst form lyme in there. But the overload of toxins can't be good for the body and certainly isn't good for the rest of the family. So I'm leaning toward a slower course of treatment, trying to find that balance between aggressive enough to stay ahead of reproducing bacteria but gentle enough to stay married and being able to raise a mentally healthy family over the next upteen months of treatment. Hey I hear 'ya! Need to stay married and keep siblings from throwing objects at her...Seriously though, I am not giving her tindamax this weekend and will see if things improve. The behaviors certainly cannot get much worse. She carried her backpack to the car in her teeth yesterday!! The contamination fears are getting the best of her to be sure!

I am thinking of foregoing the tindamax this weekend - just too much OCD the last 2 weeks, we are going crazy. I guess I don't expect much to change since she hasn't had a dose since last Sun AM and the week was our worst in a very very long time. Dr. J's office called Thurs and promised to get back to me, but hasn't yet. Any opinions on this? I just want to see if she can get some relief. Also we have had to cut back to 12 bentonite clay pills a day from 20 because she has diarrhea constantly since starting Vancomycin and need to get more probiotics in her, especially at night. She's on vanco, bactrim, zith, and tindamax. On the bright side, she had violin state competition today, and scored 27 of 28 - somehow she can manage around other people, thank God! On the other hand, she carried her backpack out to the car in her teeth. Can't touch it!

Unless you have a budding engineer, in which case it is most likely normal...

My oldest son never watched a lick of TV until his sister was old enough to settle down and pay attention to it. Then when he turned 4, he watched 101 Dalmations about 1001 times. Could be a boy thing? Very very VERY focused on legos at those ages though...

YES YES and YES! Please don't mistake the sharing of information as regret - we are all moving to a better place. When I look back at my posts from last fall, (when dd10 was first diagnosed with PANDAS) I can tell you that we are in a much much better place now. The treatment is not always easy, but it is better than not treating, or not treating appropriately. Although we all want it to move faster than it does, we are moving in a positive direction. It takes some strength.

Have you tried melatonin? 1/4 tablet at dinner time does it for us. You could use 1/2 tablet too, but she might be groggy the next morning.

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. LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD. MMC, do you know how old the child has to be to get doxy? Because I have always heard for adults doxy and bicillin shots were the preferred treatment for lyme disease. I think my daughter, 10, is too young, although she is 90 pounds. What are the downsides to that treatment? Laure, not sure about an age limit on doxy. I would think age 10 and 90 lbs is fine...dosage will be adjusted by weight. I think DS is on 50 mg twice a day, fairly low dosage compared to his 1000mg of aug a day. He weighs about 77 lbs. No downsides noted yet. Have seen some herxing, but not much lately. His stomach is fine so far. On lots of probiotics and make sure eats before the doxy. Doxy does cause skin sensivity, so puts on tons of sun screen and is not in direct sun much...no issues so far. I personally know two adults on doxy for lyme treatment, so it is a preferred Lyme drug. We sure saw some improvements as mentioned just 48 hrs of being on doxy. maybe it was just the timing, and is getting better b/c of combination of abx. We sure hope so. You should feel very hopeful. My brother had lyme disease very very seriously about 10 years ago, totally 100% healed now. For him it was weekly bicillin shots, along with doxy for 6 months. Then I'm sure a taper and cyst buster, but the worst was over after 6 months. As I said, he was so very ill, had to leave his job temporarily on disability. Keep us posted!! Who is you doc and where are you located? You can PM me if you'd prefer.

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. LLM, we are right there with you. Our DS11 (now almost 13) had a bad experience with IVIG, whereas PEX was a breeze and most beneficial. I bet it took him 10 months to get over all the side effects, whether it was herxing or not, we do not know. Our insurance covered PEX, (80%). We are not sure if they would cover it again. We are in the middle of Lyme treatment and would like to get all possible Lyme / co-infections cleared before we do it again if needed. But IVIG...well, not so sure we would even do that again. The prescribing doc said we should try a lower dose, to prevent him from getting so sick. We are aware HD is the preferred method for PANDAS kids. He got 2 gr/kilo over 2 days...only got 1/2 bag in him on the 2nd day, so he received 1.5 total. He was so sick the 2nd day, they admitted him in the hospital that evening. So, what does this mean? Not sure. The only issue we had with PEX was it was short lived. We saw about a 40% improvement for a month, he then got the swine flu and went downhill from there. We hope this Lyme treatment works, have been at it for about 3 months and have seen some slight improvements since adding doxycycline at last visit. Now on monthly bicillin shots, augmentin and doxy. Within 48 hrs of adding the doxy, we saw improvements in personality and mood. Still major struggle is with tics, and ADHD, has some OCD. MMC, do you know how old the child has to be to get doxy? Because I have always heard for adults doxy and bicillin shots were the preferred treatment for lyme disease. I think my daughter, 10, is too young, although she is 90 pounds. What are the downsides to that treatment?