sheeboo

I would urge everyone who lives anywhere where there is a large deer population to be skeptical of a negative Lyme test if it was the only source of diagnoses. Blood tests for Lyme are used ONLY for CDC reporting and not, in fact, as diagnostic criteria. This is a pretty good break-down of why the tests are so often false-negative, etc (from the Canadian Lyme Disease Foundation): http://www.canlyme.com/labtests.html A new documentary, "Under Our Skin," address many of these issues as well as the fact that it is in the best interest of insurance companies (many documented unethical relations between members the US Lyme Board and Ins. cos) to keep the CDC numbers low. I haven't seen the film yet. Some more links to Lyme and neurological issues in children: http://www.lymebook.com/lyme-autism-connection http://www.canlyme.com/pediatric.html http://linkinghub.elsevier.com/retrieve/pi...306987707005786

Yes, negative as per blood test but positive according to Lyme specialist per rash on the back of neck. There is only one test that has any level of reliability--the Western Blot from IGENIX labs in CA--and even then, if you've been on an antibiotic in the past year, chances are good the test will be negative because the spirochetes (bacteria) learn how to hide, seriously. Also, the antibodies, which the test looks for may only be present in the blood for a short time. The only way to really know is to go to a Lyme Literate doctor (and there aren't many! ), who will diagnose through history and symptoms. Another aspect of Lyme is it is thought by some researchers to be transmittable through breast milk. I had Lyme prior to becoming pregnant. Look at www.ilads.org (International Lyme and Associated Diseases Society) for more info.... Best of luck!

Thanks, Pat!

Hi Pat, I'm using plain Kiefer from Lifeway and adding berries and a few dates along with the water I soak them in overnight. She's drinking it, but not as easily as I'd like (I hate for it to be a chore). We're taking Metagenics Ultra Flora Plus--here is the break down: A 50:50 blend of: 15 billion live organisms† Lactobacillus acidophilus NCFM® Strain Bifidobacterium lactis Bi-07 (formerly known as B. infantis††) Globulin Protein Concentrate 560 mg Ingredients: Fructooligosaccharides (FOS), concentrate of immunoglobulin proteins from whey (milk), Bifidobacterium lactis (milk, soy), Lactobacillus acidophilus (milk), and maltodextrin. Contains: milk, soy. Which probiotic do you recommend? I know from my own experience the die-off is almost as bad as the illness! I'm glad to hear there are ways to lessen it. Thanks!!!!! ~Brie

Pat, what a wonderful website!!!!! Thanks so much! If you don't mind, I have one more question---Do you have any take on Fructooligosaccharides? We are using a probiotic that was recommended by my daughter's neurologist, yet 5 days into her course of antibiotics, she has a yeast infection. She's been drinking (cow) milk kiefer too. Fructooligosaccharides are in fact a sugar, which has me wondering if these are the best probiotics for keeping yeast at bay...... Thanks ~Brie

Yes, TMom, we had the same reaction: tics and ocd 90% gone within two days of antibiotics (Omnicef) and completely gone after 21 days. I asked Dr. Fuhlbrigge if he thought this was purely coincidence and the email was his reply. All this is just so confusing. I will try to find the study you mentioned. Thanks!

I emailed the good doctor to ask: "I just finished reading your article on PANDAS in the April newsletter and I am curious about the research regarding your argument that, "The only role for antibiotics is to prevent recurrent strep infections and reduce the risk of future injury to the affected regions of the brain. Its important to recognize that antibiotics wont treat neuropsychiatric symptoms." Do you have any studies you could direct me to?" He emailed back just 5 hours later! Here is his reply: Thank you for your comment and I hope your daughter is continuing to do well. I think there are many questions and few answers regarding PANDAS and need for a great deal more study. I do not do research in this area myself, but I do try to read the literature and help families find appropriate care for their children. My comment is based on the hypothesis that PANDAS results from cross-reactivity of the immune response to strep with elements of the brain that regulate OCD and movement disorders. Treatment with antibiotics would be expected to remove the trigger (recurrent strep infections), but these drugs are not know to act directly on the brain to change behavior or alter neural signals related to movement disorders. Although there is great interest in PANDAS as a potentially preventable source of OCD and tics, it would appear that this mechanism is the source of symptoms for only a small percentage of patients who present with OCD and tics every year. The majority of patients will need ongoing support from their pediatricians and psychiatrists/ psychologists and potentially need other medications. There is great risk in withholding appropriate care in hope that antibiotics alone will solve the problem. I am, of course, unable to answer to your question of whether your daughter's improvement was related directly, indirectly or not at all to the antibiotics she received. I am glad she is better and hope she continues to do well. There have not been studies addressing your question directly, but neither are there studies supporting the hypothesis that antibiotics treat OCD/tics directly. There are a couple of recent reviews trying to address these questions (listed below) but I think the answers are still to come. With Warm Regards, RCF Robert Fuhlbrigge MD PhD Pediatric Rheumatology Pediatric autoimmune neuropsychiatric disorders associated with streptococci (PANDAS): update.<http://www.ncbi.nlm.nih.gov/pubmed/19242249?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum> Shulman ST. Curr Opin Pediatr. 2009 Feb;21(1):127-30. Review. PMID: 19242249 [PubMed - indexed for MEDLINE] Pediatric movement disorders: an update.<http://www.ncbi.nlm.nih.gov/pubmed/18607212?ordinalpos=6&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum> Wolf DS, Singer HS. Curr Opin Neurol. 2008 Aug;21(4):491-6. Review. Relationship of movements and behaviors to Group A Streptococcus infections in elementary school children.<http://www.ncbi.nlm.nih.gov/pubmed/17126304?ordinalpos=19&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum> Murphy TK, Snider LA, Mutch PJ, Harden E, Zaytoun A, Edge PJ, Storch EA, Yang MC, Mann G, Goodman WK, Swedo SE. Biol Psychiatry. 2007 Feb 1;61(3):279-84. Epub 2006 Nov 27. Immunology of obsessive-compulsive disorder.<http://www.ncbi.nlm.nih.gov/pubmed/16650717?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum> Murphy TK, Sajid MW, Goodman WK. Psychiatr Clin North Am. 2006 Jun;29(2):445-69. Review. PMID: 16650717 [PubMed - indexed for MEDLINE] PANDAS: current status and directions for research.<http://www.ncbi.nlm.nih.gov/pubmed/15241433?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum> Snider LA, Swedo SE. Mol Psychiatry. 2004 Oct;9(10):900-7. Review. PMID: 15241433 [PubMed - indexed for MEDLINE]

Hi All, I too really believe in the benefits of probiotics and it is interesting to read your thoughts on kifer, which I love! I went to two places today to try and find "young green coconuts" to try making Pat's recipe. I have a few questions though: 1) Do you think it matters if one uses the sweetened fruit flavors types of goat milk kifer? It seems that all the ones I've seen aside from the plain have some kind of sugar in them. Isn't this a big no-no when the desire is to control yeast? 2) I used to be in love with agave until I read that many brands are actually mixed with corn syrup. Furthermore, some argue that agave doesn't really break down quite the way it is advertised to. Here is a link to the article: http://www.living-foods.com/articles/agave.html I'm just not sure how I'll get my dd to drink the plain stuff! Any thoughts would be greatly appreciated!

Hi Karen, Thanks for your email! I'll try to respond tomorrow, but for now: I don't remember where we bought our container--either at Essene in Philly or Great Pumpkin in West Chester. I think you can buy it at any good health food store, just make sure it has a Unique Manuka Factor (UMF) of at least 10+. The UMF is the level of antibacterial properties in the honey. Google "Manuka honey" and you'll be amazed at the list of ailments it is believed to help. I have it in the house because my brother, who used to have terrible heartburn, has been using it daily for a year. It is a bit pricey, but I believe well worth it. From the (small) bit of reading I've done on Bactroban and Neosporin, they can both lead to a greater immunity to antibiotics and harder to treat infections--something none of us with young people who really need antibiotics wants! The warning with the tube of Bactroban actually states this, so I'd try the honey with your daughter. I've also been crushing a clove of garlic, another "old" antibacterial (which works great for yeast, btw) and mixing it with a small bit of honey for our dd. She's been fine with this the past few days because she knows it will help kill the bugs--and keep the vampires away! I have no idea if Strep remains on the skin but given how it can hide in tissue it does seem possible--any medical professionals here? It seems like a very valid concern, especially with younger PANDAS kids. As a side note, another natural antibiotic I've been reading about lately is Oregano oil. It seems a lot of people with chronic Lyme use it because they can't deal with the yeast issues associated with long-term ABX use. I wonder if this would help our kiddos? I really thought we were out of the woods before this happened. I can't believe how quickly the tics and ocd-ish behaviour have returned. I'm terrified but trying to stay hopeful. The antibiotics worked so well last time, but I realize now that I have to be more vigilant. This is such scary @#%^!

Colleen, She is on 250ml Omnicef (Cefdinir) once a day (dh is allergic to Penicillin), which is the same ABX she took last year with such great results. This is only the second time in her life that she's had ABX of any kind. The Omnicef did, however, make her really irritable for some reason. She took it for 21 days last time. My stepmom had a new tube of Bactroban in the house from a recent surgery, so I will start her on that tonight. I also read that Manuka honey (made from the flowers of Tea Tree) is a strong natural antibactrial/antibiotic that works really well and actually works better than antibiotic cremes for things like MRSA. We have some in the house and I put that on too and the redness went away within five minutes! I think I'll alternate between the honey and the Bactroban. I've been re-reading all my PANDAS links and I agree, 7 days probably isn't long enough. The pharmacist actually gave me 10 days worth. What is your take (if any) on the "annual" nature of this? Thanks too ancrobert for your input. I think Bactrim is a sulfa drug, no? I *think* I'm allergic to sulfa drugs, which might be why that wasn't prescribed? When we first started down this PANDAS road, this board was more helpful than any of the doctors we saw! Thanks to ALL of you for sharing your stories.

Colleen, Thanks for your quick reply! Do you know if I need a script for Bactroban? And what do you think about the seven-day course? Enough? Thanks!

Update: I called the ped's office and spoke to the doctor who saw dd this morning. He hadn't read her file so he was unaware of the previous strep/tics. He fully agreed after looking at her file that she needs to be on oral ABX and prescribed them for 7 days, after which we'll see if she needs longer. How will we know, though, if we should keep on the ABX for more than 7 days? Interestingly enough, he realized that she was diagnosed with Impetigo EXACTLY a year ago! And then positive for Strep in Aug. I find this interesting because my Lyme Dr. believes that disease works in an annual cycle. I know that my Lyme symptoms return every year within a week of the first time I was infected! Is it possible that PANDAS/Strep work the same?

Hello, My almost 6 year-old daughter was diagnosed with a mild case of impetigo this morning. She began manifesting tics (vocal and motor) about a year and a half ago after a dose of children's Zyrtec which she was clearly allergic to. At the time I didn't know about PANDAS. I researched (this board was VERY helpful!) and after reading requested a Strep test. Her Dr. laughed at me because there were no signs of Strep, but sure enough, she tested positive. Her tics, which had become severe, disappeared by 90% within two days of antibiotic treatment. She has been tic-free since Oct. (antibiotics started in late Aug.) My husband brought her to the Dr. this morning and at the time, we weren't aware that impetigo is in fact Strep. After he called me, I looked it up and now wonder if the best course of action is to start antibiotics immediately. Her Dr. recommended Neosporin and if it hasn't gotten better by Monday to start ABX. In retrospect, dd has been clearing her throat a lot, which I just attributed to pollen...but this is how her tics began the last time. Any thoughts? Thank you! Brie