mama2alex

This is just wonderful! So happy for you!!

I don't know the answer to your question about abx and testing, but wanted to suggest that you call the LLMD right away and let him know what's happening and how hard it is on all of you. I'm not sure if he's in today, but tell the office staff its urgent and they will give him the message as soon as he gets in. He may adjust his recommendations based on what she's going through. Sorry things are so hard right now.

This is great news! These are the same two meds Alex started with. I don't know anything about the things you mentioned for sleep though. We didn't see any herxing in the first few months, just improvement. Hoping the same for you! Either way, I'm here to support you whenever you need me. We're heading back today, so let's do try to get together.

I'm so glad the presenters at this conference were encouraging Lyme/coinfections testing - this is a huge step forward! But I just wanted to point out that this is far from accepted practice across the board for PANDAS docs. And the ones who are doing it are sometimes using CDC testing, not looking at coinfections, missing diagnoses, and often don't know all the ins and outs of treating tick-borne illness. So I want to encourage everyone who's still working with a PANDAS doctor to educate them on all these aspects. And if you find yourself with the time and energy, reach out to doctors you've worked with in the past. I think best-case scenario is for a PANDAS doc to refer patients to a Lyme doctor to rule it in or out, as opposed to PANDAS specialists trying to test, diagnose and treat outside of their own area of expertise. Many of us have relationships with both PANDAS and Lyme docs, so we have the power to help forge these partnerships.

Wendy, Thanks for posting! This is a great article and very timely for us, as we just started working on biofilms. We are doing a very simplified protocol (one antibiotic and 2 caps of an enzyme called Interfase Plus 30 min before eating), so I worry that we should be doing something more like what's described in this article. What are others doing for biofilms?

Thanks for posting this S&S. It's important for those new to PANDAS/this forum to understand that many PANDAS kids have tested positive and been diagnosed with Lyme and coinfections. As JAG10 has stated, there are PANDAS kids who have tested negative for Lyme as well. But its crucial to rule it out. The best way to do that is by going to a doctor who treats Lyme on a regular basis, because although there are lab tests, they aren't 100% reliable and like PANDAS, its a clinical diagnosis aided by testing.

Thanks for posting this! I'm interested, but need to see more details on who's speaking, topics, etc. Right now, there's just a "Save the Date" posted on the website.

I loved reading this post. Those obvious breakthroughs feel SO GOOD, don't they? Thanks for sharing this news, and NICE WORK!!

I just saw this on the Time for Lyme web site and wanted to post for anyone who lives out that way: FREE LYME DISEASE SEMINAR Lyme Disease in the Hamptons--What You Need to Know Friday, August 19 Bay Street Theatre 1 Bay Street Sag Harbor, New York Registration: 3:30-4 pm Program: 4-5:30 pm Casual Reception with Refreshments: 5:30-6:30 pm Special Guest: Ally Hilfiger, Time for Lyme Star Light and Fashion Designer Panelists: Benjamin Luft, M.D., Professor of Medicine, Stony Brook University Medical Center Darin G. Wiggins, M.D., Chairman Department of Emergency Medicine, Southampton Hospital George Dempsey, M.D., Family Practitioner, East Hampton, NY Pre-register by calling: 203 969-1333 or click here. Sponsored by Time for Lyme, Southampton Hospital, Bay Street Theatre, East End Tick Control and Landscape Details, Inc.

We have the kit for this too, but we haven't done it yet - trying to find the "right" time. I didn't find the instructions very clear. Our doctor said to stop all vitamins for 5 days prior. When I asked what they consider a "vitamin," they just kept repeating "vitamins." The instructions also said the person should be under stress during the urine test, but its summer vacation, so I'm not sure how we're supposed to stress him. I'm thinking about doing it the day before school starts. So I would love to hear any feedback on this as well. LLM - did you stop probiotics as well?

This is really interesting. Someone's found a genetic marker for autoimmunity to strep? Can you share the article?

We tested through Igenex. My understanding is the Bartonella tests often come up with a false negative, but my ds tested positive. He was IND on two Lyme-specific bands for Lyme, so essentially a negative test result. We are treating for both diseases based on symptoms and history. And our LLMD told me that its very rare to just have Bartonella. Its possible he could have gotten Bartonella from a cat scratch (or I could have, and given it to him in utero), but the symptoms would look different. Igenex gets a bad rap in some quarters - accusations of false positives and "always" yielding a positive result, but they don't always come up positive. I tested neg for Lyme and coinfections via Igenex, my son tested negative for Lyme, and my husband, who was bitten by a tick carrying Lyme Disease (lab confirmed by saving and testing the tick) tested negative.

I noticed that this is the title of the October symposium at Texas A&M where Dr. Swedo and Dr. Cunningham are speaking. Is this the new name the scientific community has given PANDAS? Does anyone know? Just curious.

I do think the high quality fish oils, such as Nordic Naturals, are good for these kids in general, but for a few its a problem. When we gave our son Nordic Naturals years ago, he started incessantly chewing his shirt sleeves and collar. They would get soaked and people would make comments, so it wasn't just a little thing. When we took him off, he stopped. At the time, we thought it was some weird kind of sensitivity or allergic reaction (this was pre-PANDAS before we knew just how weird things could get!). We did have a Bioset practitioner desensitize him for this, and it worked until he had another bout of pneumonia, which must have resensitized him. You mentioned that olive leaf extract "hurts the antibiotics action." Can you explain? We are now treating my son for Lyme/Bartonella, after PANDAS treatments were unsuccessful, and he was on several antibiotics at the same time as OLE for a while, so I'm curious.

I agree with getting him tested for Lyme and other chronic infections, whether you get into the study or not. Igenex lab is the best way to go, as they look at antibodies to specific Borrelia outer surface proteins that the CDC tests don't look for. You'll want to have an LLMD (Lyme-literate MD) read the tests and evaluate your son, because the diagnosis is, in the end, clinical just like PANDAS. Many oldtimers on the PANDAS forum have found Lyme and are now treating with good success, including us. Here's a good article on Lyme - make sure you read the section on children and Lyme: http://naturalnutmeg.com/?p=1000 Any word on the study yet? Hope he's accepted! I don't think IVIG can hurt necessarily - our son had two HD IVIGs. It's just that in hindsight, I wish we had looked at everything and worked on treating the infections before resorting to a blood product.

This is amazing, fantastic news!! So happy for you. Thanks for sharing with us!

What a long road this is for everyone... Congrats to you for demanding and finding answers for your son! I'm so glad to hear he's doing better.

Here's a quote from the ILADS web site on rashes: "Although the erythema migrans or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly."

I don't know anything about this practitioner, but wanted to post this in case anyone was interested in hearing what he has to say: http://www.webwire.com/ViewPressRel.asp?aId=141829 Chronic Lyme Disease webinar highlighting all-natural therapeutic methods on Tuesday, July 26 at 8:30PM EST. The event is hosted by David Rodgers, M.S., a Michigan-based nutritionist who is a former Lyme patient himself. Rodgers uses a system designed to eliminate all nutrient deficiencies, reduce intake of inflammatory foods, and strengthen the immune system with targeted herbs and supplements. He describes it as similar to Linus Pauling’s Orthomolecular Medicine, but instead of using mega-dose vitamins, imbalances are corrected using diet and smaller amounts of a wider array of supplements.

We give our ds11 (80 lbs) 2 Custom Probiotics (100 billion microorganisms) and 2 Florastor per day. You need to find an LLMD who will work on supporting/healing the gut while treating for Lyme. I am so sensitive to antibiotics than I'm doing an herbal-only protocol for Lyme/Bartonella until my gut is in better shape.

He was on Azith (250 then 500mg) for over a year, which really didn't do anything. When we started Lyme/Bartonella treatment, we added Rifamptin, then Alinia, later they rotated in things like Cedax, BEG spray, Cipro, Bactrim and Septra. He's on supplements for deficiencies such as D and glutathione, lots of detox support and they've also rotated in some herbal medications along the way. We feel like he's hit a plateau in his treatment, so we are looking into things like mold and KPU/HPU at this point.

Oops! I double posted somehow.

Didn't mean to mislead anyone. I was responding specifically to a question about suicide threats and violent behavior, and was just saying that I think we've finally moved beyond THAT. I don't think we're done with Bartonella yet, but that and other improvements show us we're definitely making progress. To recap, he had a sudden onset of OCD and severe separation anxiety in June '09 while sick with his 6th bout of pneumonia. At his worst he was pulling out knives, hitting me, threatening to run in the street or jump out of the car, brushing off bombs he thought were attached to his body, isolating from friends (he's extrememly outgoing) and was absolutely terrified that there was an intruder in our house - 24 hours a day for over 7 months straight. He also missed a good portion of the 3rd grade, mostly due to separation anxiety, but also due to physical illness. So yes, it was bad. First HD-IVIG was Dec. '09 - significant improvement by 7 weeks post, but lost all gains after a virus hit him in May '10. Second HD-IVIG was in July "10 - never saw any change with this, but it may have helped in supporting the Lyme treatment when we started it. We'll never know for sure. We started Lyme/Bartonella treatment in Sept '10 and saw good progress in the first 12 weeks. We still occasionally see slight concerns over someone having broken in while we were out, but I think this is herxing. We also struggled with separation anxiety in 4th grade, but it was better. All in all, he's a MUCH happier boy, but still struggles with some obsessions and rigid thinking. Hoping 5th grade brings more healing and happiness. Sorry I don't have the "ultimate" news for you, but we are definitely moving in the right direction and all much happier with our day to day lives! I believe this is congenital, so I don't have any expectations that getting him fully well will take less than two years, at a minimum.

Yes for us. DS11 has Lyme and Bartonella diagnosis. Thankfully, I think we have moved beyond this now after 10 months of treatment.

We believe my ds has congenital Lyme and Bartonella (he got it from me in utero). He's had some mild behavioral/mood symptoms since birth, but the only dx was sensory integration disorder. His issues pre-PANDAS included daily tantrums/crying, sleep problems, aggressiveness as a toddler, mild attention problems, mild ODD symptoms, mild muscle weakness, plagiocephaly/torticollis, yeast overgrowth, allergies, asthma and recurrent pneumonia. Then at age 5, he had a PANDAS episode we didn't recognize while hospitalized for pneumonia. It resolved with antibiotics, but then at age 9 he had a more extreme onset of PANDAS that we couldn't resolve no matter what we did. He's never had a tick bite that we know of, and the nature and timing of my health problems also has led us to the conclusion that its congenital.