KaraM

Thanks, everyone! Momaine, glad to hear your dd is heading in the right direction as well. It was a rocky start for us, but after the first month of treatment, the line seemed a little steadier (but still slow). Keep the faith! Kara

So, my dd9 has been treated for PANDAS since 3/10 and Bartonella since 3/11. Her primary symtpom is germ contamination fear OCD. In the past, whenever anything hit the floor, it would become contaminated...no one could drop anything or place anything on the floor. Anyway, she's been improving slowly over the past several months...two steps forward, 1 1/2 back...you know the drill. Last week I posted she was around 80 - 85% better. I'm going to bump that up a bit. Today, her Minocyline pill (for recent Ehrlichiosis diagnosis) fell on the floor...She initially said she couldn't take it, but I said we didn't have enough for her to waste it. So, she said, "oh well, I guess I have to to take it," and popped it in her mouth. On a different note, last week I had asked about herxing with Ehrlichiosis treatment, since I was trying to time the introduction of minocylcine so any herxing didn't interfere with family visiting from California. She had a little bit of hyperactivity and was somewhat "uninhibited" (i.e. crude comments, grabbing my breast), but that only lasted a day or two. She didn't have any physcial symptoms of Ehrlichiosis. So, I'm feeling optimistic that we are coming out of this. Hopefully I am not jinxing her/us. Kara

I may be mistaken, but I think that unreliabe part is false negatives as opposed to false positives. So, if you test and get a positive, you could be pretty certain it was correct. My dd9 tested positive for Bartonella through IgeneX, but not Quest (although the Quest lab was run after 4 mos of treatment). She has not tested positive for Lyme (only band 41 was IND - nothing else showed up at all). We are currently waiting for a second round of Western Blot results through IgeneX, so this may change...my dd's symptoms have always been pshyciatric - OCD, rages, ADHD, emotional lability, deterioriation in math skills...no physical symptoms, no rashes.

I voted none of the above primarily because of the 1m period for sudden onset. I can see in hindsight symptoms increased over the course of 3 months or so. So my slope prior to the sharp increase would have been rising more slowly. We've only had two major exacerbations so far (hopefully that will be it). It was the similar both times. Never got back to baseline after first time (close), never went as high second time (close again); so in that respect I would say more like graph 2 with the onset increasing over 3 months instead of <1..

Hi Wilma, Since she doing better in other areas, but not the OCD, would it be possible to introduce CBT/ERP therapy? Do you have a therapist near you that is skilled in CBT/ERP? Another thought would be look into Inositol. It is basically vitamin B-8. There have been a few small studies on it helping with OCD. It's also supposed to help with liver functioning...so may be good to give in that sense, too. You can get it at health foods stores or Whole Foods. It comes in powder form with a very slight, sweet taset. Just mix in water or juice. INtroduce slowly so she doesn't get gassy. Obvisouly, you should run this by your doctor first. But it is supposed to be very safe. Kara

After starting treatment for Bartonella, my dd went through several three or four day periods where one of her symtpoms intensified. One of those periods was definitely hyperactivity. She was running through the house, jumping, bouncing...she couldn't settle down. At night, when she would try to go to bed she would kick and flail and say, "I'm so HYPER." It lasted a few days and then stopped. Then a week later, something else would come up (like the rages, depression, OCD). This all happened within the first six weeks of treatment. Since then, she hasn't had such distinct, obvious and intense herxing periods. Still some herxing here and there, though... Change is good, right??

Buster, Is this supposed to represent time prior to PANDAS diagnosis and treatment? Or does it matter? Do you want responses from those of us who have since discovered infections other than strep playing a role? Thanks, Kara

"Singular..." Is this the medication often given for asthma??? Thanks, Kara

Would love to hear an update from anyone that went! Thanks, Kara

A few things: we did try accupuncture before discovering PANDAS. We did it along with ERP therpay. Any benefit from the accupuncture was very short lived. She would get a little calmer for a day or two, but just a little. The benefit was not strong or long enough for us to justify the expense. Even the accupuncturist felt like it wasn't really helping much. As for the abx, Dr. B told us that dosing can make a difference, so increasing it may be helpful. Our dd is 68 lbs. When we were just dealing with PANDAS she took 1 1/2 tsp of Zithromax/day (350mg) to start. Eventually dropped to 200. She did really well for a while, too, then symptoms returned. Her initial standard Lyme tests were negative as well. However, after her symptoms returned and could not be elimiated by resolving strep around her, trying steroids, chainging antibitiotics, etc., Dr. B tested her for Lyme and co-infections through IgeneX. Her Lyme was inconclusive, but she did test positive for Bartonella and Ehrlichiosis. Bartonella is a big culprit when it comes to OCD/tics, rages, etc. I've watched with stunned amazement as more and more people from this PANDAS board end up on the Lyme board with positive Bartonella tests. I think there was one day when three people showed up with positive tests. So would strongly encourage you to explore the Lyme and co-infection possibllities through more specialized and sensitive testing than the stanard ELISA test (if you have not already). Once we started treating for Bartonella (which was adding Bactrim to the Zith), she started to improve again. We are at about 80% right now after four months of Bart treatment. I'm sorry you are going through this. It's excruciating to get the improvement and then lose it. Kara

She was tested 2 or 3 times for mycoplasma pneumonia by Dr. B. All times negative. But isn't there another mycoplasma that's more correlated with Lyme. Not sure what Dr. J tested for, but know they drew 11 tubes of blood and urine sample, so I assume (hopefully not mistakenly) that he's covering the necessary bases. I'll know for sure when we get all the results back. Kara

Thanks, everyone, for your responses. We heard back from Dr. J. to discontinue the Zithromax and just do the Bactrim and Mino. We have the script in hand, so can start anytime. But before we do, I have another question about Ehrlichiosis...hopefully some of you that have it will see this. If not, I'll post it separately. Did you experience much herxing with the Ehrlichiosis treatment? As I said, my dd has not had any physical symptoms to speak of. Just want to know if I can expect her to start having fever, not feeling well, etc. If yes, it may impact my decision about when to start given some upcoming plans and the fact that she's functioning "relatively well." Thanks again, Kara

We saw Dr. J. last week for the first time. He ran more tests on my dd and ds. My dd had perivously gotten positive Bartonella results from IgeneX. We've been treating for that since the end of March with Zithromax and Bactrim. She's doing much better now..she's functioning about 80 - 85%. On Monday we received a message from Dr. J's office saying she was positive for Ehrlichiosis and that she should be on Minocyline in addition to the Bactrim (they didn't say anything about the Zithromax, so I have to clarify whether we continue or discontinue. Her symptoms have always been neuro-psychological (PANDAS like - OCD, rages, ADHD, depression...). Nothing physical at all. I've looked up symptoms of Ehrlichiosis and only find things that mention physcial symptoms. Does anyone know if neuropsych issues are associated with Ehrlichiosis? If yes, can you point me to a source? On a different note, the Bartonella results (this time through Quest as opposed to IgeneX) are negative for both IgG and IgM. I imagine that's good news. Does anyone know at what point you stop treating once the test results are normal? Would it be two months after the disappearance of all symptoms like they recommend for Lyme? Thanks, Kara

Can someone explain what the "cross-reactive" means?? Thanks, kara

I won't be attending this year, but did last. It was great. I wish I could go again (and bring my dd). Thank you for your efforts to spread the word. But I wanted to reply and just say WOW!!!!!! 85%!!!!!! I do remember your posting from last winter very well and am just THRILLED beyond words to hear how far your daughter has come. You are both truly an inspiration. Kara

Hi, We'll be arriving in New Haven late morning/early afternoon. Any advice on what to do with a 9 and 11 year old? Thanks, Kara

I can't say for sure...but a lot of us have children who had PANDAS symptoms, treated for PANDAS and saw improvement (or not), then with future exacerbations, dug deeper and found other infections like Lyme and Bartonella. There has been some talk of strep being a co-infection for Bartonella. I'm not sure if that's true or not. But my dd had slighltly positive strep titers last year, but no physical symptoms of strep. The titers went down with antibiotics (along with her OCD and other PANDAS symptoms). However, the symptoms returned over the winter, without strep. We tested for Lyme and co-infections, and found Bartonella. I found it interesting when I read "Cure Unknown." Back in the 1970's, when Lyme was just being discovere/researched and no one was really sure if it was baceterial or viral, Dr. Jones said many of his Lyme patients also had strep. When he treated those patients with antibiotics, he said their Lyme symptoms improved as well. That was his first clue that Lyme was a bacteria and not a virus. My gut tells me there is a connection. I wish there would be some more research done in this area... quote name='elykoj' timestamp='1310678120' post='117023'] i dont understand what PANDAS has to do with Lyme disease ?

You say she had strep in May...was it confirmed strep with a throat culture? I think if you had the positive throat culture and the behavior changes followed within a few months, PANDAS is a logical diagnosis regardless of where titers are...If I remember correctly, the FAQ mentions something like this. I've heard others say if you get a positive throat culture, don't even bother with blood tests...

I remember struggling with this decision, too. My dd9 had done really well just on Zithromax for about 9 months, then the OCD and other PANDAS symtpomss started to come back/did come back over the winter. We thought intially it was due to exposure to brother with strep. But when we got his strep under control and she did not improve we had to decide what to do next...steroids or SSRI. I did not want to do both at the same time, because I did not feel like I would know what was working if something did. We decided to try the steroid burst first, for several reasons. One being that, as opposed to SSRI's which can take several weeks to months to start working, the result of the steroid burst would hopefully be more obvious, sooner. It was also a short term treatment, as opposed to SSRI's, which you never know how long you'll need to be on them. I also felt that, if I truly believed myy dd had PANDAS, I had to stay on the PANDAS path and exhaust my "PANDAS" treatment efforts before going down the "traditional" OCD route. And finally, I was afraid of the SSRI's making things worse. Side note: Last year, by dd also had depression, rages, and bi-polar like behavior...she did not have it prior to starting the steroid this time around. So we did a 21 day steroid burst. She tolerated it well mood wise, but her OCD did not improve. When she was done with the steroids, however, everything got worse. In addition to the OCD, the depression and rages, bi-polar stuf started to return as well. After this, we saw Dr. B. again. He was surprised the steroids did not help. But instead of saying try an SSRI, he said we had to consider whether there were any other underlying infections. My dd appeared completely healthy, physically, to me, so I was in shock when we got the results back from the additional testing. She was positive for Bartonella. My understanding is that steroids are not great if you have Lyme or other tick born illness. So if I could go back and time (and what I would do if I were in your shoes), I would have done the testing for other infections/autoimmune disorders prior to the steroid burst. If neither of those helped in terms of diagnosis or treatment, then I would go the SSRI route. I hope this helps. Have you tested for other infections already? Kara

Did you get my email a couple of weeks ago? I can't remember!! (Losing it). If yes, Were you able to get in touch with any of those docs?

What time does she go to bed? Does she have trouble falling asleep or staying asleep? If something is keeping her awake at night, can she articulate what it is?

I'm in Salem, MA and travel to CT to see Dr. B. I know another parent has a pediatricain who has been helpful in Wilmington or Winchester, but is still not an expert. Can't seem to find anyone in Boston... Where are you located? You can PM me if you don't want to post. Kara

I asked a similar question of our LLMD regarding Bartonella. I was confused whether the same thing was with Bartonella as was happening with PANDAS - where the antibodies attacking the brain result in the inflammation of the basal ganglia and then the neuropsych symptoms I asked if that what was happening of if the infection was actually in the brain. She said she thought it was the infection in the brain...so not the same as PANDAS. I don't know if she's right or wrong...but those were her thoughts..

We were advised by our PANDAS specialist NOT to give a tentanus booster, flu or any other vaccine. He did not want to prompt any immune response.

I tried to participate in the discussion, but they did not post my questions. Did that happen to anyone else? When the topic of co-infections came up I asked for their thoughts on Bartonella suppressing the immune system and possibly resulting in negative LYme results. I also asked if they knew of any studies connecting Bartonella and OCD. Maybe because I focused on Bartonella as opposed to Lyme, they didn't include my comments. Hmmmm.