KaraM

Hi Everyone, I know this can be a tough time of year, but we are going to try for meeting on Saturday, December 13th from 1:30 to 3:00. 8 Front St #305 Salem MA As usual, rsvp is helpful but by no means necessary. Kara

Boosting this post as a reminder that we will be meeting in Salem MA today at 9:30. 8 Front St. Suite 305

Hopefully my other posts tell you a bit more...but my son also had the Lyme and Myco P...major food allergies as well. His combo was Bactrim, Biaxin and Tindamax (pulsed). For supplements...Sacchoboulardi and Culturelle. My son also took Vitamin D (he was deficient) Now, based on the advice of Dr. H (my LLMD here in MA), I give both of them EpiCor Immunity Plus to keep their immune systems strong. My son continues to to take Vitamin D. By daughter also takes L-Glutamine for her stomach. Toward the end of her 3 years on abx, she started complaining of stomach aches. It had never been a problem before. In some ways I think it was a sign to us to stop treatment...we were hemming and hawing for several months. Dr. J's theory is to treat until two months after all symptoms have stopped.

At the very beginning of this, after taking her to the pediatrician (and being prescribed Celexa (SSRI) within 15 minutes), we also got a therapist referral. We did not fill the script. We called the therapist. She told us about PANDAS and suggested we test for strep. But when the throat culture came back negative, she concluded it was not PANDAS. (that's a side note). She went to the (CBT/ERP) therapist and we did diligiently did the homework for a few months. Initially we thought there was improvement, but after a few weeks she just continued to get worse. Every item she got over was replaced by three more. We were just about to try the Celexa when we learned her friend (who was also experiencing PANDAS symptoms...but tics, bedwetting, separation anxiety), we did the Cunningham test and begged the doctor to try abx. Cunnigham test was high in the PANDAS range and she started improving on day 11 of the 14 day dose. Cutting to the chase...we continued the ERP with her...but really, the stuff started melting away once she really on the antibiotics.Eventually we stopped the formal therapy. We continued to use the tools a little bit here and there if there was a blip.

When she was diagnosed with Bartonella, Dr. B put her on a daily combo of Zithromax and Bactrim. Dr. J. continued with that. When Dr. J suspected she also had Lyme in spite of the negative test results. So he added a Cyst buster, Tindamax, on weekends. That is when she was able to start pushing through the last 5% (and after adding that, her Lyme tests eventually came back positive).

We will be holding our next support group meeting on Saturday, August 9th from 9:30 - 11:00. 8 Front Street Suite 305 Salem, MA RSVPs are helpful, but are by no means required. (Just want to make sure we have enough cookies ) Please let me know if you have any questions. And please feel free to pass the word. Thank you, Kara

HI There... I have not posted in a very long time...but we've just had such an incredible few weeks...and I can remember how reading stories like this when we were in the worst place would often give me hope. My dd is now 12. When she was 7 she had debilitating germ contamination fear OCD...couldn't get dressed, couldn't make it to school...I could go on and on, fight or flight rages, adhd like behavior, barely passing the state exams, etc. etc.. I know many of you know exactly what I'm talking about. Dr. B. initially diagnosed and treated for PANDAS, but he eventually found Bartonella and referred us to Dr. J. who also found Lyme. We treated her for three - four years. She finally went off abx a little over a year ago. Anyway, she just finished sixth grade. She struggled in school from 2nd - 5th grade. She even had a difficult start academically this year. But we just finished the year. She participated in cross country during the fall (and received the coaches award). The other day they had a moving up ceremony. She received the science award. She was inducted into the National Junior Honor Society. She made it into the 95+ club (kids with a 95 or above average in every subject). She also received what they call "the bucket" award. While we knew about the other stuff, we had no idea this was coming. But this award it is for the child that comes to school every day "with her bucket full." and "who fills the buckets of everyone else," They were describing my daughter as someone who comes to school every day with a smile on her face, is always kind to others and always asks what she can do to help. I could barely breathe when this occurred. Tears just welled up. No one but my husband and I had any idea what this all meant in terms of how far she had come. My son, too, also had Lyme. His symptoms were mostly physical...although he also had some anger and depression.... But after 6th and 7th grade years that were marked with lots of frustrations regarding behavior (not so much acadademic) he finished the eight grade school year with all sorts of accolades regarding his progress and character. So, for those of you that are in the thick of it now...first, my heart and prayers go out to you. But please know, there is hope! It was a one step back, two step forward recovery for us. And I can't say I didn't sometimes question whether we were on the right path. But we stuck with it even through those moments of doubt thanks to many people on this board. And while I don't log on to this board much anymore (I now am back working full time + and dealing with the logistics of kids that are active an involved in a lot of things), I am always willing to answer emails. I also run a support group here in Salem MA. I will post the next date in a separate post. With appreciation to everyone who has help us and thought of healing for those of you who are still struggling, Kara

Bumping as a reminder...

HI beerae22, I'm one of people LLM mentioned above. We only had a brief encounter with restricted food intake it is was the result of contamination fears (her lips that might touch the food, the food itself, etc). However, the father of the child featured in Niel Swidey's Globe articel (see http://pandasnetwork.org/the-boston-globe-features-pandas/) has come to our Salem Support Groups a few times. He is not on this board, but he has told me that he is willing to speak with anyone. So let me know if you want me to connect you with him. I'll need you to send me your email address though. You can PM it to me. You seem like you are still wondering whether this is psychiatric or PANDAS/PANS. Have you considered the Cunningham test? Having those results really helped us purse the PANDAS/PANS path with confidence. And when I was in doubt, I was always able to look back. See http://www.moleculera.com/ It can be a little pricey, but depending on your plan, insurance may cover some of it. I will say, though, that it is one of the best investments we made in helping our dd. This test does not test for any specific infection, but determines whether there are anti-neuronal antibodies attacking the brain...a sign that the immune response is mis-directed. (I'm out of practice on explaining this one, so someone else may want to chime in). We too started with negative throat culture and a negative Lyme test. But we did eventually find Bartonella (another tick born disease). Based on that, Dr. B, and then Dr. J. treated her for both Lyme and Bartonella. With the appropriate treatment, she has returned to health. Her Lyme test did eventually show as positive (both Igenex and the LYme Culture test). So I wouldn't dismiss Lyme just because the test was negative. Please feel free to PM me with any questions. I'm short on time in writing this today, but wanted to respond and let you know I'll help in any way I can. Kara

I understand not wanting to head down the lyme road. It's daunting to say the least. But I just feel the need to share my daughter's experience in response to the above quote. Where did you hear that? When my dd first went on zithromax for pandas/strep she improved relatively quickly and was at at least 90% after 6 months on zithromax alone. She had a standard lyme test after being on zithromax for a few months. One specific band showed up, but it was interpreted as negative. After she took the nose dive after six months on zithromax, we played around for a few more months with different meds. When we eventually discovered Bartonella dr. B put her back on zithromax and added bactrim saying it would treat the Bartonella and lyme if she had it. We saw improvement within days. That was the beginning of the road back to recovery. Later, when we added a cyst buster to the antibiotic regimen, more lyme bands appeared and she got a positive result. We have since even got a positive lyme culture. So, while I understand not wanting to go down that road...if that is the underlying problem you may not see recovery until it is treated correctly with the right combination of antibiotics. just something to think about... kara

Hi Everyone, We will be holding our next support group meeting on Saturday, February 8th from 2:00 - 3:30ish... 8 Front Street Suite 305 Salem, MA RSVPs are helpful, but are by no means required. (Just want to make sure we have enough cookies ) Please let me know if you have any questions. And please feel free to pass the word. Thank you, Kara

I just logged on after months of being away to post our upcoming Salem Support Group, saw this post and thought I'd take this opportunity to respond to your question and update people on where we are. I don't recognized some of the new names and I'm sure you all may not recognize mine! Anyway, like LLM's, our recovery was saw tooth. Thanks to LLM and others on this forum, I think ours was quicker than hers (3 years). We started out with the OCD that became apparent over the course of a few months (not overnight) and eventually debilitating. It took us about 6 months after visiting the pediatrician (who wanted to put my 7year old on Celexa) and a negative throat culture, to head down the PANDAS path. What convinced us to go that route was her eventual Cunningham study results of 189 Cam Kinase and positive strep titers. We saw Dr. B and after six months of Zithromax, we had our daughter back to about 90% of baseline. She then took a nosedive back down. Six months of experimenting with different antibiotics and steroids under Dr. B's care we eventually discovered Bartonella (a tick born illness). Dr. B. referred us to Dr. J. We eventually discovered Lyme as well. Treatment for Lyme and Baronella lasted another two years. Like LLM said, it was 2 steps forward, one step back. Herxes were intense at first. They were also cyclical (i.e. one time the OCD would get really intense, the next time the depression, etc.) But each time, she would come out stronger than before the herx. Eventually the herxes were just annoying and pretty brief. We finally felt she had been well long enough last March to taker her off antibiotics. She's continued to do well, even though we know the Lyme is still there (based on a Lyme culture test we did after she was off antibiotics for 3 months). The only lingering issue is some reading comprehension. But who knows, that may have been there anyway. In some ways it's hard to say whether she is a baseline or not. She's almost 12 now, starting puberty. This all started when she was 7. What is recovery? What should baseline look like? All I know is I have a happy, active daughter with no signs of the OCD, ADHD, depression or rages that appeared when she was 7. I'll take it! (Even though I was extremely frustrated this weekend with the amount of screen time she keeps sneaking and the messes she and her friend keep leaving all over the house!). BTW, we also figured out her older brother and I both had Lyme as well. My son just stopped his antibiotics last week. I stopped about 6 months ago. We're both doing ok. (unless, of course we count my irritiablity this weekend ). Anyway, even though I am not on the forum that much anymore, I am always more than willing to email/talk with anyone that has questions about our experiences, what helped, etc. Kara

Thanks, everyone. I am actually on herbals A-L complex for my Lyme. My dd sees Dr. J. He doesn't really do the herbal stuff. I'm thinking I'll ask my LLMD the next time I see her what she would do for my dd and perhaps switch over to her or add her into the mix. Dr. J. has the same philosophy - treat only if there are symptoms. The hardest part for me is determining if something is a symptoms. I feel like I over analyze every single behavior. I haven't tracked her symptoms consistently for a couple of years now. But perhaps it's time to start. I'll at least get the notebook out, if not the excel file. Kara

We did it over three years ago when it was in the study phase and it was the best $400 we ever spent. It gave us the ammunition to get long term antibiotics from our pediatrician (or at least enough to tie us over until we got to see a PANDAS specialist). It helped us make the decision about which medical path to follow for treatment (i.e. abx vs SSRIs) because therapy alone was clearly not working. And over those three years, when I would sometimes question whether we were on the right path, I would remember that test and say "yes." It is available in Massachusetts now, too. Kara

I haven't been on the board as much lately. Partly because I haven't had as much of a need and partly because I haven' had time given a new job (which I was able to take because of the same reasons I don't have a need to be on the board). I do try to continue providing support in some ways to others. And please know I'm happy to receive emails if anyone who knows our history wants to tell someone else to contact me. My dd has been off antibiotics since the beginning of March after three years of being treated first for PANDAS, then Bartonella and Lyme. She's been doing really, really well. Every now and then a behavior will creep up that I might question, but it never lasts. For the most part, she really has just seemed to get better and better. So this is all good. We saw Dr. J a few weeks ago and he had the Lyme culture test run on her. He told us that sometimes this can take several months to show something, if it is there. Well, I got the results in the mail today and it is already showing positive. This is the bad. So what do I do? Do I put her back on abx? I believe Dr. J's philosphy is that you treat if there are symptoms. Her symptoms have always been neuro-psych....it's so hard to tell with an 11 year old girl if a behavior is normal or not.... Just the last couple of nights she's had some behavior regression around homework or reading at bed-time...stuff we haven't seen in a very, very long time and that ended with her saying over and over that she's " a terrible person." Again, we have not seen stuff like this in months, if not more than a year. It was really nothing compared to the past in terms of intensity or duration (although the first night lasted over an hour). But it did bring back a flood of memories for me. I'd be grateful to hear people's thoughts. Thanks, Kara

Bumping one last time. Our meeting is tomorrow at 2pm. Kara

Bumping as a reminder... Kara

HI Kathy, I am not an expert, either. And while I understand the concept to a certain extent, I feel like I regurgitate what I've read or been told more than anything else. So I am not sure whether when Lyme is in cyst form, the cysts are palpable or if you have a cyst, whether it can be tested or not. I do know that I was somewhat skeptical about the whole concept until I saw what happened to my daughter's test results after taking the cyst buster. I can elaborate more on this off line if you'd like. Kara

So, I actually talked to her for about an hour...She didn't even want to touch Bartonella when I mentioned it. I think she wrote me off after that. Nothing I mentioned was touched upon. Maybe I was too PANDAS focused for her purposes...I don't know. I was pretty disappointed in the article.

The very first time we saw Dr. B. he tested for Lyme through a standard lab. She showed positive on 41 and 34. But that was dismissed as negative at the time. A year later, DR. B. ran a western blot through Igenex for Lyme and coinfections. By then (after a year on abx), only band 41 showed up as IND...but Bartonella was positive. So Dr. B. put her on Bactrim and Zithromax saying it would treat both the Bart (and Lyme if she had it) and referred us to Dr. J. Dr. J tested her a for Lyme a couple more times through Igenex, but nothing turned up. At some point I found the original results with from Dr. B with the 34 on it and showed it to Dr. J. He said that test confirmed exposure and put her on Tindamax, saying the Lyme could be in cyst form. Four months later, when he tested again, more bands started to show up. My point in saying all this is that perhaps the wb is not showing anything because the Lyme is in cyst form. At your follow up, I suggest you ask this question and whether it would make sense to try a cyst buster. Maybe you could even write a letter and fax it to his office asking if this is a possibility. If he thinks it makes sense, maybe he would prescribe the Tindamax and bands will show up on the next tests that are at your follow up. (I'm tired...I hope I'm making sense.) Kara

HI Everyone, Our next meeting is scheduled for: Saturday, June, 15 from 2:00 - 3:30 8 Front St # 305 Salem,MA RSVP is not required, but is helpful. So let me know if you think you may be able to join us. Thanks, Kara

Sorry for any confusion, but this date has to change to the 15th now. I am going to re-post so I can change the title. Kara

My dd also tested positive for Bart...no obvious stretch marks either.

If you are going to haul it up to CT, then I would suggest skipping DR. B and going to Dr. J or Dr. M, both of whom are LLMDs. Dr. J. just treats children. I say this with the utmost respect and gratitude toward Dr. B. He helped save my dd's life (not to mention my ds's and mine) by putting us on the Lyme path. But after he determined we were possibly dealing with tick borne illnesses, he actually referred us to Dr. J. There is also a nurse practitioner in Washington DC...so a little closer. I can PM you any or all of the contact info for the above. Kara

I am going to PM you with the name of a nurse practioner in DC.