KaraM

HI, Just bumping as a final reminder...anyone is welcome. Kara

Bumping as a reminder. The meeting is tomorrow if anyone wants to join us. Kara

HI, I'm posting this here as well as on the PANDAS board for anyone that may be interested. Our next meeting is scheduled for this Saturday, May 7 from 12:30 - 2:00. There is a possiblity we may need to re-schedule it, so please rsvp to me via PM or email, so I can let you know if that is the case. Also, I can give you location info/directions. Kara

Hi, Bumping this...we are trying to get a count of how many will attend, so please rsvp to me via PM or email. If you need location info, let me know as well. Kara

Glad the atty has a good repuation. If you want to talk with another attorney at all, you may want to contact Beth Maloney (www.savingsammy.net). She is an an atty ad litem for kids in Maine. Her son, Sammy, has/had PANDAS. I'm so sorry for what you are going through. Kara

Have you done anything for detoxification? Epsom salt baths? Milk Thistle? Charcoal? I'm pretty new to this, but my understanding is that as the disease is being treated and the bacteria die off, toxic die off cells are released into the blood ((I think this is what causes the herxing). You can help the body get rid of the waste using various detoxification methods. There are a lot of previous posts about detox on this forum. Obviously, check with your doctor before adding anything to the protocol. I do think some of the things you mentioned that are side effects of the drug are also symptoms of Bartonella - so this has got to be very conusing. I'm so sorry. Best wishes, Kara

We did a 21 day tapered dose. She tolerated it fine...it did not cause her to go crazy or anything, but it didn't seem to help her OCD either. After doing it, we found out she was positive for Bartonella, so that may have been why. There were a few posts talking about steroid bursts in late January that you may want to look at...

That is so great!! It reminds me of something that happened with my dd one day. Although her's was a response to a prompt. I asked her if she was feeling better and she said "yes." I asked her how and she couldn't really say. Then I asked her where, and she looked at me as if I were an idiot and rocked her head with each syllable as she said, "IN MY HEAD!" I think it's helpful to know that there really is some sort of "feeling" in their heads...

When you say she is very "ocd," what are her obsessions and compulsions? Although it's questionable as to how helpful therapy is when there is an untreated infection at the route cause, once the infection is being treated, you can us some exposure and response therapy to help re-train the brain and get passed the obsessions and compulsions. The book LLM mentioned goes into it. Another book for you could be "Talking Back to OCD" by John March. If you tell us some of the obsessions and compulsions she has, we can also try to offer suggestions on how to help her get over them... Kara

We just went through this, too. I asked about the same thing a few weeks ago. We had her stop using liquid hand soap or bar soap and had her start using the Cetaphil liquid skin cleaner (like Nancy mentioned - it's a very gentle, moisturizing skin cleaner).She would put the Eucerin intensive treatment (forget the name at the moment and don't have one near me), but it's more like a thick jelly than a lotion or cream - very greasy. After putting that on, she would put ont cotton gloves that we got at CVS (I think in the bandage section). They come two pair to a box. All of this helped. Plus we got her to try ERP, first reducing the amount of time or number of squirts, then reducing to washing only after using the toilet or before eating. I'm happy to say that her hands are now about 95% better. Thankfully, she seems to be doing better overall, too, so that may be part of the improvement. The new PANDAS/Bartonella/Lyme treatment combo of Zithro and Bactrim seems to be helping. Good luck. I know it's hard. And it's so visible. Our dd's classmates started asking what was wrong with her hands. Someone said they were 'gross" (actually, I think that may have been my loving son...). She became very self consicous. Eventually, I think this, along with the pain, also helped motivate her to stop. Kara

My PANDAS dd has IgM Band 41 IND, but ++ on IgG Band 41 - no other bands My nonPANDAS ds has IgM 41 IND, as well as 31 and 83-93 IND; for IgG, he in ++ on 49, + on 30 and IND on 39

We are on the West Coast...no Disney for us right now. We have not had IVIG. We discovered Bartonella as we were trying to unturn every stone before considering IVIG... Her hyperactivity seems to be passed. So maybe it was a herx. Now, she just seems down all the time. Nothing can please her. Everything is a disappointment. If I didn't know PANDAS and Bartonella were at play, I'd think she was a spoiled brat. We bend over backward to do things she wants to do, etc., but she always finds things are boring, etc. She just had a birthday party yesterday and could only complain that her cousin (whose bday we also celebrated) got more than her (even though she really didn't)....My dd couldn't even enjoy what she got. I hope this is a herx, too. I really don't think she's a spoiled brat. But man, she sure is acting like one, now. I feel bad for her and am angry at the same time. Thanks for listening. Kara

Thanksfor the re-assurance. The hyperactivity does seem to have died down. We stopped the Bactrim since we have come to FLA for vacation. We've doubled up on the Zith in its place. Unfortunately, her OCD and emotional lability has increased. I've been contaminated since we got here on Friday. All the clothes we brought are contaminated, too. A few emotional breakdowns as well. I'm not sure if this is herxing or due to medication change. Either way, it sucks.

make sure you have all your questions written down, too. It's so easy to forget. And it stinks having to go back and ask after the appointment. It always takes much longer to get answers when you are not there. If you don't understand something he says, or test results he's reviewing, don't be afraid to ask him to explain it. He's very smart and knows his stuff, but sometimes talks a language that's very foreign (at least to me). But if I ask him to explain, he's very willing and patient. Wilma, I know you and your daughter have been going through a lot for a very long time (probably an understatement). I wish you the best. Good luck tomorrow. Kara

My dd9 has taken to running all around the house, whining like a baby, flapping her arms or wiggling around lying down, etc. She says she's hyper... (I agree...) This is a new behavior for her. I know age regressive behavior and hyperactivity are PANDAS symptoms. Does this happen with Bartonella/Lyme, too? Could this be herxing? Or could it be a negative reaction to medication?

So, do you think it makes sense for me to get tested, too, to see if what they have may be congenital? I'll ask our LLMD about the PCD testing. Thanks for your response. Thanks, MDmom for your reply, too.

We've been waiting for these for a while. I don't know what took them so long. We already had other tests back and dd8's Bartonella was positive at 160. LLMD expected WB to come back positive, but I'm not so sure it is...I sent them to her, but of course am to anxious to wait. I'll just write where there was something to write about: IgM 41kDa: IND IgG 41kDa: ++ That's it for her. DS 11 was borderline on Bartonella at 40. Western Blot results are IgM 31 kDa: IND 41 kDa: IND 83-98 kDa: IND IgG 30 kDa: + 39 kDa: IND 41 kDa: ++ So, if I read the interpretation correctly, you need + in two or more bands. This would make my son positive, but not my daughter. This is exactly the opposite of what I would expect, since it's my daughter that has all of the OCD and other PANDAS symptoms. What is the difference between IgM and IgG again? Thanks, Kara

Congratulations! And thanks for giving us hope....

Have you done any blood tests? If you have, you may want to do those again, too, so you can see any trend that's happening. If you haven't, you may want to consider (especially if the culture is negative), so you can start tracking in the future. On a different note, my dd8 had a negative culture, but positive blood tests. She started on treatment Zith then prophylactic. Then she started to decline even while on the Zith. We thought it was due to expsure (which it may very well have been because her brother had strep). But we have also learned recently that she tested positive for Bartonella. We started treating her for this and think we may be seeing improvement now. Have you done any testing for Lyme or other tick borne illnesses? Kara

It was a about 4 years ago, so I can't remember exactly. But I don't think it was there for more than a few days. She has had no other rashes since.

Wendy, This just made my eyes pop out of my head. The rash my dd8 got (that I wrote about in the Mass LLMD visit post) appeared in late spring/early summer 2007. ) Her OCD started in summer 2009. Is Kinghardt your doc or did s/he write a book or something?? Where can I find more info about this two year period? (I'll google, but would love it if you pointed me in the right direction.) Thanks, Kara

From what I understand, they are characteristic of the Bartonella bacteria that is carried in some ticks. Apparently cats can carry it, too (cat scratch fever). EAmom posted a link to an article on the cat in another post. Here is a link with photos of different rashes. There are three pictures: one for Lyme, one for Bartonella, one for other tick borne illnesses. If you click on any of them it will bring you to several more pictures for that particular category. http://www.lymediseaseassociation.org/index.php?option=com_phocagallery&view=category&id=11:rashes&Itemid=331 If you would like to see my dd's picture, PM me with your email. (You can't really see her face...it's pretty anonymous). Kara

Thanks for asking. I've hesitated saying anything for fear of jinxing us. I think she's doing better. She's slowed down on the handwashing, so swelling and bleeding has stopped. Even when things get contaminated, she seems to get over them more easily. And, she's starting to get over some long standing things. For example, the tub/entire 2nd floor bathroom has been off limits since her stomach bug in Feb. She took the detox bath last night!! Monday was her first tantrum/emotional breakdown free day (following several days where there was usually one or two). Yesterday she did pretty well too, although she paniced when it was time to go get her hair cut. She says she's feeling better. This morning we were talking about stopping her Bactrim while we are in Florida, since it will cause sun sensitivity. She said "NO WAY I'm stopping that medicine. It's helping me." So that's a good sign - on the flip side, she has pretty fair skin, so my guess is we'll end up with a little burn no matter how many precautions we take. My son, on the other hand, with skin that tans as soon as he steps out the door, was horrified that he may possible get a sunburn and said he would refuse the medicine. Glad he has his priorities straight.

I'm sorry, Momcap, for your frustration. I feel for you. Also, I can't keep everyone's stories straight. You said you child got worse on PANDAS abx. How long was your son on them? Could it have been herxing? (Sorry if these questions were already asked....) Kara

Hi, I thought I'd post this here in addition to the Lyme Board, since we've been on the PANDAS board for so long and some things I thought were strep now look like they were Bartonella...see below. My bet, is, too, that if you experience PANDAS herxing when starting treatment, probiotice and detox ideas could help, too. I brought my dd8 (65lbs) to see Dr. H. in Newton, MA yesterday and was very happy with how the visit went. Dr. H. was very warm, welcoming, down to earth and, most importantly, knowledgable. She listened very closely, reviewed the history I had put together and took lots of notes herself. She was very good with our dd, too…gentle, friendly and kind. She confirmed that my dd had been exposed to Bartonella based on the Igenex results. Even though we don't' have the Western Blot back yet, she expects they will be positive. But she said that the medication protocol we are currently on (1 tsp Zithro/day and 1 tsp. Bactrim 2x/day prescribed by Dr. is good for both Lyme and Bartonella. So she wouldn't change anything even if they are positive. She said if my dd doesn't improve more soon, we could increase the Zithro (from 1 to 2 tsp/day). I printed a few pictures of an unexplained rash my dd got in late spring 2007. Since our PANDAS diagnosis, I've always wondered whether it was a strep rash. After the Bartonella results, I've wondered if it might be a lyme rash. When Dr. H. looked at them, she noticed something I didn't see in the photo and that was some very faint stretch mark lines. So now I can clearly see them and think that this may have all started a few years ago…(Damn those pediatricians who just said it was viral.) In addition to the abx, she recommended some other things or confirmed what we are doing is good: Probiotics: Saccho B in the morning at the same time as abx is fine; Culturelle a few hours after evening dose. Inositol: I started giving this knowing it could possibly help the OCD and it is for liver detox. She said this is good for anxiety and is very safe. She said we could go up as high as 5000mg/day. Epsom Salt and Soda Bath If things are really bad from a Herxing standpoint, she said Charcoal capsules (at least 2 hours away from meds) are a great absorber. Another absorption option she said we could try is "pectasol" made from the inside of the rinds of citrus fruit. She also recommended we add fish oil and had a highly concentrated liquid available in her office from Pharmax. It has oil of orange in it for flavor. My dd had no problem taking about ¾ tsp. of it. 1tsp. has 750mg DHA and 1050 mg EPA, with total omega-3 of 2250mg. She said this could help with brain inflammation. She said the treatment will probably take at least a year. She would want to see at least 2 months symptom free as well as lower Bartonella titers. Since my dd did so well over the summer, but has had a terrible winter, she said she would hesitate stopping treatment before the end of next winter regardless. One last thing she said we could try if we wanted to is a homeopathic treatment for strep called San Strep. The way I understood it is that when strep bacteria die, the dead remains of the cells can hide in the tissue so there is no way to culture them out and the body's immune system doesn't know they are there. The San Strep binds to the cell wall deficient form of strep allowing the body to recognize them so the immune system can clear it. As I think about this more from a PANDAS standpoint, I'm not sure how I feel about it. Do I want my dd's immune system to recognize strep? I'm going to have to follow up with a question about this. All in all, a good appointment. With traffic, it took us a litte more than 1 ½ hours. But only 45 minutes home. Much better than the 4 to CT. We follow up in 2 months. I don't think Dr. H. is very experience with PANDAS...she was not familiar with the Cunningham test (but did want to see the article that comes with the test results so she could familiarize herself with it). So my bet is that she would be very open to exploring it and learning about it if you are looking for someone in the Boston area who is, at a minimum, not a skeptic. In the meantime, on a slightly different note, I got a call late yesterday from Dr. J's office to schedule an appointment for both dd and ds. Because there are two, we can't get in until August. I asked the person calling me if they ever refer to Dr. H. and she said they do give her name out as a LLMD but can't say much more than that…. So I have the appointment with Dr. J. just in case. If I don't think it's necessary at a later date, I'll cancel. Sorry for such a long post. I hope it's helpful to some.