What has helped OCD?

[jjl]

All,

 

I see that many on this forum are dealing with OCD. After 4 months of treating Babesia with Mepron/Zith/Doxy, the OCD has really ramped up. We are about to switch over to treating another parasite and then Bartonella soon.

 

Has anyone found anything that clearly helps OCD? I understand that the OCD spiking may be a sign that babesia is being knocked out, which is bringing Bartonella out and OCD may be one of the hallmark symptoms of Bartonella. Has anyone seen a reduction in OCD symptoms with the tx of Bartonella? If so, what tx were you using and how long did it take to reduce OCD?

 

Any help is appreciated as it is becoming a debilitating problem. John L

[kmom]

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.

[LNN]

My kids' OCD went away with the right abx combo as well. My Pandas son was on augmentin XR and our LLMD kept him on that thru the winter. Plus zith+bactrim. Adding just the zith did nothing. Adding the bactrim, we saw big improvements in a matter of weeks. Stayed on that thru the winter. Then plateaued, then backslid. So we just dropped the augmentin and added omnicef- holy cow! Big herx, return of OCD. But it's subsiding. We add tindamax in a week.

 

For my daughter, her OCD was worse than his, with intrusive thoughts. But within 24 hrs of just starting zith only, it dropped from a 7 to a 2. Then she got a sinus infection and ramped up to an 8. Pedi added omnicef for 10 days and again, within 24 hrs of the abx, dropped to a 4, then a 2, then nothing by the time the omnicef ended. Stayed on just zith for a month. I thought maybe it was Pandas and zith alone would do it. But small blips made me worry. So we added bactrim and she mildly herxed for a few days. OCD returned. Upped the detox and it went away.

 

So I think it's a matter of hitting upon the right abx combo and realizing the "right" recipe will change over time. In the meantime, we've done lots of ERP and CBT and that makes a big difference for the periods that OCD rears its ugly ahead again. Doesn't make it go away, but allows us to function.

 

So for my kids, it's the right abx + detox + ERP. No single thing has been a magic bullet. But between them, we're getting there...

[philamom]

My kids' OCD went away with the right abx combo as well. My Pandas son was on augmentin XR and our LLMD kept him on that thru the winter. Plus zith+bactrim. Adding just the zith did nothing. Adding the bactrim, we saw big improvements in a matter of weeks. Stayed on that thru the winter. Then plateaued, then backslid. So we just dropped the augmentin and added omnicef- holy cow! Big herx, return of OCD. But it's subsiding. We add tindamax in a week.

 

For my daughter, her OCD was worse than his, with intrusive thoughts. But within 24 hrs of just starting zith only, it dropped from a 7 to a 2. Then she got a sinus infection and ramped up to an 8. Pedi added omnicef for 10 days and again, within 24 hrs of the abx, dropped to a 4, then a 2, then nothing by the time the omnicef ended. Stayed on just zith for a month. I thought maybe it was Pandas and zith alone would do it. But small blips made me worry. So we added bactrim and she mildly herxed for a few days. OCD returned. Upped the detox and it went away.

 

So I think it's a matter of hitting upon the right abx combo and realizing the "right" recipe will change over time. In the meantime, we've done lots of ERP and CBT and that makes a big difference for the periods that OCD rears its ugly ahead again. Doesn't make it go away, but allows us to function.

 

So for my kids, it's the right abx + detox + ERP. No single thing has been a magic bullet. But between them, we're getting there...

I agree with the ERP & CBT. My biggest regret is when my daughter was doing better with her ocd (90-95% was gone), that I would have spent more time working on that aspect. Now that a lot of it's back, I'm frantically trying to address it. It's not debilitating right now, but enough that is making life difficult for her.

Edited March 28, 2011 by philamom

[NancyD]

This is the piece that I think may be missing for us. PANDAS is well under control, Lyme symptoms seem to be ok (Tindamax is key for us), but anxiety and OCD is just as bad if not worse. We're waiting for Bartonella, Babesia, and Myco P PCR tests to come back. DD15 is taking 1000 mg bid Augmentin, 250 mg bid Azyth (4 days/week), and 500 mg bid Tindamax (3 days/week). Should we try Rifampin for anxiety/OCD and would you eliminate the Augmentin XR while doing so? How long to try?

 

Nancy

 

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.

[LNN]

Nancy,

Don't have any experience with rifampin. Bactrim + zith is what we started out on for Bartonella in our house. Doxy was a consideration as well, but couldn't due to their baby teeth.

 

Are you also doing ERP? That's really helped my DD6 with her intrusive thoughts. I know it's incredibly hard and sometimes you can't touch it until meds dampen the fears, but it also helps me cope and mentally puts into into "coach" mode instead of "I hate this crap and want it to all go away" mode.

 

Laura

[NancyD]

Hi Laura,

 

Bactrim is on my shortlist of abx to discuss with our doc in two weeks. DD tried ERP two years ago but it was just not working for her. I think it's tough to start at that age. Her counselor even tried modifying it for her but she fought it. It's the anxiety and intrusive thoughts that are the most problemsome.

 

Nancy

 

 

 

Nancy,

Don't have any experience with rifampin. Bactrim + zith is what we started out on for Bartonella in our house. Doxy was a consideration as well, but couldn't due to their baby teeth.

 

Are you also doing ERP? That's really helped my DD6 with her intrusive thoughts. I know it's incredibly hard and sometimes you can't touch it until meds dampen the fears, but it also helps me cope and mentally puts into into "coach" mode instead of "I hate this crap and want it to all go away" mode.

 

Laura

[Ladymavs]

My son (13) had sudden onset of intrusive thoughts OCD last fall and, after researching, I took him to Ped. and talked with him about PANDAS. He did blood test and strep titers were well within normal range. Knowing that something just wasn't right with this sudden onset, we found an Immunologist who had worked with PANDAS. He did a complete work up that showed extremely high IGG and low Vitamin D. He started us on 250MG Azith along with NAC and VItamin D drops. Within 48 hours of abx, we saw major decline in intrusive thoughts.

 

He has had some small flare ups through the past 8-9 months since start, but nothing major until July. We had major uptick in intrusive thoughts back to level of first onset (maybe even worse). Went back to Ped and Immunologist, we started him on 10MG Prozac and increased dosage of azith to 375 mg. We saw some improvement within first week or so. However, that only lasted for four weeks and we are not having another flare or possible herxing.

 

We are doing probiotics, omega, vit c/d supplement,and multivitamins as well. Does this sound like a flare or herx?

 

We have had one CBT session and will continue with this to develop strategies to deal with re-occurences of the thoughts.

 

Anyone else have symptoms return so soon after increase in abx or addition of Prozac?

[airial95]

Just another thought - we are not dealing with Lyme or co-infections (no + or IND bands across the board through Igenex), but my son has had to use many of the stronger antibiotics - our issue was chronic strep (always + swabs). Even when he was on full strength antibiotics he would test + again. When he tested + on a combo of Azith and Augmentin, we added rifampin for 30 days - it completely knocked out his tics and made a huge difference. At the end of 30 days, he asked our pediatrician for "more of the red medicine" because it "made Harvey (his OCD) go away and now that the red medicine is gone, Harvey is coming back". He was 4 1/2 years old at the time - my ped wrote the script without question!

 

My son is now on a combination of 3 abx, and has done 5 IVIG's which has taken us from 6+ new strep infections per year to only 2 since last 12 months. Both of those times came when we tried to lower the dosage of one of the abx. (Last time the strep was in his nasal cavities).

 

My point is - every time we have a ramp up in any symptoms that last more than 3 days (his reaction to exposure is usually 3-5 days, with things improving by day 3) or he wets himself/the bed (+ for strep EVERY TIME this happens) we get the whole family strep checked. It seems unlikely considering the amount of abx they are on regularly - but it has happened - more than once. So it never hurts to check for infection, just because you're on abx doesn't mean you're 100% protected.

 

Our doctor also has us swab muciroprin (topical abx) into the nasal cavities 2x per day for 30 days whenever they are + for strep (or for 10 days when it's just an exposure) because strep can hang out there and cause problems that the oral abx can't quite knock out.

[MomWithOCDSon]

I would also wonder about the Prozac. He started it in July? Did you start right at the 10 mg., or at a lower dose and increase?

 

You've probably read here about how PANDAS/PANs folks can be more sensitive to SSRIs, and, in some cases, do not tolerate them well at all. And because SSRIs generally take 4 to 6 weeks to reach full efficacy, I would wonder if maybe the Prozac isn't perhaps at too high a dose for him? Or if, perhaps, isn't the right med for him at all.

 

My DS takes an SSRI (Zoloft), so I'm not anti-SSRI. But we've experienced ourselves the negative impacts of a dose higher than he could tolerate, so my primary suspicion would lie there.