Hopeny

My DD8 had these,at the time when I didn't know she had Lyme I googled it and found there was some ingredient on our Tom's toothpaste that could cause these. We stopped using Tom's and switched to conventional brands and they went away. I also had her rinse with Biotene. I don't know if Lyme was a factor as I have read of canker sores as a symptom, but it seems in this case it was the Tom's My DD3 had mouth sores from coxsackie and I used mylanta and they went away. I don't use Orajel because I read that it is dangerous but I don't know if its the same issue for Ambesol with older kids.

For RMSF the only treatment is Doxy. Due to the serious nature of RMSF if it were me I would want a full course of Doxy. Good luck.

As far as I understand, cutting is a ritual (as in OCD). However that said obviously it is extremely serious and complex, it seems like it would make sense for a full medical workup to explore any medical sources of a problem concurrent with the treatment.

My daughter 8 has had very good results with Augmentin/Biaxin combo. In the beginning of treatment I missed 2 doses of Biaxin and the symptoms came right back, its not scientific but I believe the Biaxin is helping a lot. My daughter also has Mycoplasma and Lyme, and some Lyme co infections, in addition to elevated ASO and multiple + strep cultures with no sore throat. My DD is much much better. The PANS stuff is almost completely gone and now we are working on moving Lyme on out. Hugs , she will get better. I think a team of doctors is necessary for this.

Thank you guys for going. I wish I could, I'm posting frequently to BCH wall. Reading all the posts is truly remarkable, there are so many of us

The story is hitting the Lyme groups, I expect more Mama and Papa bears joining in the fight

all that I have come across require an in person visit first. And my view is its best. My DD had a 4 hour consultation on her first visit with our LLMD, and an extensive physical exam testing her reflexes etc.

With many illnesses that is the case but sorry the IGM/IGG with Lyme essentially means nothing. I view the tests as directional. There is a lot of background on the WB in Pamela Weintraub's book cure unknown, the spirochetes have all kinds of different behaviors which impacts the tests. I would more go by your history, when you first had the onset of symptoms, what symptoms you have now etc. In my daughter's case I am able to pinpoint onset by huge red flag symptoms in 2010. I actually think its a huge plus to test CDC positive, in terms of being able to get treatment. Good luck!

He's great about handwashing but really refuses the nasal sprays. One of his tics is picking at his teeth and gums which sure doesn't help the hygiene. I hope the Augmentin helps this be short-lived and we also started ibuprofin again. In 15 years I've never experienced fleas at the in laws but the last two visits have been not so savory as far as cleaning goes. I was freaked out and my DH went on a cleaning spree. I'm sure we offended everyone, but my kid's health is my kid's health. Fleas are totally not OK for anyone, and keeping it clean is good for everyone

Has Grandma been tested? My mother went with us to our first Dr B visit and she has ASO and Myco as high as DD's. My niece has been in a PANDAS tailspin for years and when her mother was tested just recently learned her ASO and Dnase were off the chart too. So everyone has to be treated. When my DD saw her cousins (they live overseas so its infreqeunt) she flared a few days later. I try to avoid obviously sick people but also things have been so hard, I would hate to deprive my family further of all of these kinds of wonderful things and time with friends/family. I just try to take precautions, do lots of hand washing, maybe saline nasal spray, and be prepared for flares when they do happen. The fleas and animals, I can't give you any advice, I will admit to some OCD myself so that would freak me out, I would be carrying around lots of hand sanitizer I guess. I do not let my DD go near birds and I try to keep her out of houses with cats ever since I learned they carry Bartonella, but we do have a dog and I know I am overboard with the animal avoidance stuff. I did treat our dog for strep jic.

I've seen on the Free Elizabeth Wray site that the efforts are helping. I continue to post on Facebook and I emailed two Lyme advocates tonight to see if they can join all the PANS folks. I emailed the Boston Mayor and the Mass child protection commissioner.

Teri my 8 y.o. daughter was diagnosed in January 2012 with Lyme, PANDAS in March 2012. Looking back we believe she acquired Lyme in 2010. She never had a bullseye but reading the copy of her file and a note I wrote to the doctor at that time, she did get a rash. She has been on heavy antobotics since May, and we have seen much improvement. She was on Doxy for 2 months and Augmentin/Biaxin for the rest. Similar to LLM we have seen many PANDAS symptoms abate, with pesky Lyme symptoms lessened but still persistent. So just hang on. You may want to review Burrascano's guidelines for treating Lyme, Azith is not a lone treatment for Lyme so that may be why you have not seen much progress. I do want to tell you from personal experience that the tick needing to be attached for 24 hours is a complete myth. My sister was camping with my 5 y.o. nephew and checking for ticks every 12 hours, she removed one from his side that had been attached <12 hours, and was not engorged. I freaked and insisted he go on the ILADS amox dose, his ped agreed but only gave him 10 days worth. about 24 hours after stopping he woke up and could not move his legs. Scary. After 5-6 additional weeks of abx, he is ok now. My 3 year old developed a bullseye this summer on her forearm, we are pretty vigilant so unless it was an almost invisible nymph she did not have a tick on for very long, we never saw it and that part of her arm is pretty prominent. You will find that most of what you hear from mainstream medicine, including the 24 hours to transmit, about Lyme is inaccurate. There is an excellent book called Cure Unknown by Pamela Weintraub, it gives a tremendous amount of background you may find helpful. Hugs everything will be ok. Knowledge is power in these cases, now that you know what you are dealing with you are better prepared to fight. For your own case, I am a big advocate of treat the bite. There is just too much at stake with Lyme not to.

We have a similar situation and timing, except DD8 had Lyme undiagnosed from 2010 until Jan 2012, my ped failed to diagnose until blood work came up CDC + in Jan 2012. It seems overhwleming but once you know what you are dealing with you can conquer it. DD has been on Doxy and Augmentin/Bixain combo, she seems to make the most progress on the combo. She is negative but seems symptomatic for Bart so we plan to start treatment soon. Read the How Bout a positive Thread posts on the Lyme board, these kids will get better Its a tough road. Definitely recommend LLMD (Dr. J) too.

Figured this out bun creatine ratio, thanks

Thank you both. We have made a lot of progress with PANS symtoms and some Lyme stuff, but DD has ongoing foot sole pain, leg pain, terrible self esteem and some general what I will call "upsetedness". She gets very short/angry at times and it is so not her personality, and never was. Anxiety and OCD are gone, so is the suicidality thankfully. She tested - for Bart but I think I may be a carrier and she is just not getting over the hump here so we decided to try to treat. I am very afriad of losing the progress we have made. But I think we need to treat and see what happens or she will never fully get better. The augmentin/biaxin work really well, and we seem to have more progress on the combo than with Doxy, so I would like to stick with the combo.

I've just sent an email to the Govenor of Mass, and also posted on BCH Facebook site. http://www.mass.gov/governor/constituentservices/contact/ Please read a PANDAS story from BCH's own blog!!!!!http://childrenshospitalblog.org/one-mothers-story-how-strep-throat-attacked-my-childs-brain/ No matter the different views we must really be thankful for our courageous treating MD's

We are very seriously thinking of adding Bactrim to the mix to treat DD8 suspected Bart, has anyone used this succesfully? any advice? I am scared to try and scared not to. DD has foot sole pain, leg pains and psych issues. PANDAS stuff has really quieted down with Biaxin/Augmentin. Was even able to do bloodwork this week with no protets or bribes (!!!!!!!), and DD even joking with the tech. Seems like we are left with Lyme/Bart stuff.

This is appaling and so scary. Since Elizabeth is already in the state's care, and out of BCH hands, I am thinking for example the Mass govenor, Boston Mayor, congress people, senators and the president the right people to email/call/tweet? I am not good with twitter but it would be good to tweet these folks. That seems to get a good respons. Ironically I read a PANDAS story on BCH's own blog!!!

Children's Lyme Network posted the card on their Facebook page

DD has been going to sleep and staying alseep in her room for the first time in 2 1/2 years, actually to when she first got Lyme symptoms. Anxiety is significantly reduced and suicidal ideations seem gone. (negative comments pop up but nothing like before) DD is handeling upsetting situations just about normally. Handwriting is much better. Hip arthritis is gone and she can sit on the floor like a typical 8 year old. Stomach pain is gone. She has not fallen. She wakes up in a good mood. Lethargy is mostly gone. DD's skin is soft and not like sandpaper. DD's body temp is normal and no longer 95/96. Getting along much better with her sister. She is only picking at one part of her body instead of two, and goes some days without. We still have a long road but I'm not going ino that here, I like the idea of focusing on the positives - I am so so very thankful for every single step towards healing.

When I had migraine headaches (aura no headache) in my 20's, I felt the Imitrex I was using just made it worse. I also tried Elavil which just made me gain weight, but did make me a bit happy I found something on Feverfew on the American Headache Association at the time, and started using it. I had some episodes while on it, however after 1.5 years I stopped taking it and have only had one or two migraine headaches since. I am curious about using for other applications. I had a very good experience with it and no side effects as i recall, but not sure for children,

@momtoJake Wow that must have been the best moment when he called for you. I got chills reading this. Thank goodness for your DAN!

apparently the government thinks Babs is important as well: Immunetics, Inc., has received a $3.7 million, two year SBIR contract from the National Heart, Lung and Blood Institute, an agency of the National Institutes of Health (NIH), to support clinical trials of a new blood screening test for Babesia infection. “Babesia is among the top infectious threats to blood safety and, at present, there is no licensed test available. The NIH contract will allow us to address this gap in blood safety with the first cost-effective test designed for high-throughput screening of the blood supply. We are honored to have been entrusted by NIH to carry out this public health mission,” said Andrew E. Levin, Ph.D., Immunetics Chief Executive Officer and Scientific Director. Babesia is a parasite which is transmitted by the same ticks that transmit Lyme disease. While it is often asymptomatic in healthy people, Babesia infection can lead to severe or fatal illness, especially in immunocompromised patients. The parasites can remain viable in blood donations and infect transfusion recipients. In recent years, nine fatal cases of transfusion-transmitted babesiosis have been reported. Surveillance carried out by the Centers for Disease Control and Prevention (CDC) revealed over 1,000 cases of infection nationwide in 2011 — a number that appears to be growing. The US Food & Drug Administration (FDA) sponsored a workshop in 2008 focused on Babesiosis as an emerging threat to the blood supply, and the Blood Products Advisory Committee convened a meeting in 2010 to advise the FDA on approaches to blood screening for Babesia. The contract award will enable Immunetics to bring its Babesia test, developed under initial NIH support, through clinical trials and regulatory licensure. The trials will be carried out in collaboration with Blood Systems Research Institute of San Francisco, Calif., and Creative Testing Solutions of Tempe, Ariz. Creative Testing Solutions currently tests about 25% of the US blood supply, including regions endemic for the parasitic agent. The Babesia test will initially be made available through Creative Testing Solutions’ laboratories. “We look forward to partnering with Immunetics and BSRI in the development and FDA approval process of a Babesia assay for use in blood screening,” said Creative Testing Solutions President Sally Caglioti. “It is always our intent to offer innovative services that provide our customers with the best donor testing possible. Active collaboration in the development of diagnostic tests that fit the immediate needs of the blood banking community is the next logical step to support CTS’ mission.” “When the screening test identifies antibody-reactive donors, we will enroll and conduct rigorous testing of donation-derived and follow-up samples from those donors so that we can more fully understand the natural history of Babesia infection in asymptomatic donors,” said Michael P. Busch, M.D., Ph.D., Blood Systems Research Institute Director and Senior Vice President for Research and Scientific Affairs at Blood Systems. “The information that we derive will help guide the development of policies on how the test can be used most effectively. It will also determine whether and how donors who have had a positive result on the screening test could safely donate in the future.” For more information, visit the company’s website at http://www.immunetics.com or call 1-617-896-9100 or toll-free 1-800-227-4765. Immunetics is a leading developer and provider of innovative tests for a variety of bacterial, viral, and parasitic diseases. Recently, the company received FDA clearance for its BacTx® test for bacterial contamination in platelets. The company has developed and markets other FDA-cleared products, including a test for Lyme disease, and is actively working on new tests for HIV and Chagas disease — both of which are known or emerging risks to the blood supply. About Immunetics Immunetics Inc. (http://www.immunetics.com) offers state-of-the-art assay technology for infectious disease diagnosis and blood screening, and for more than ten years has been a leading innovator of tests for bacterial, viral, and parasitic diseases. The company produces and markets a range of infectious disease assay kits and instruments. Its mission is to deliver better, cost-efficient care through more accurate diagnosis. Immunetics is headquartered in Boston. Follow Immunetics on Twitter at http://twitter.com/immunetics. About Creative Testing Solutions Creative Testing Solutions (www.myCTS.org), a joint venture of Blood Systems and Florida-based OneBlood, is the largest independent blood donor testing laboratory in the United States, specializing in high-volume blood donor testing and infectious disease reference work. This non-profit organization, headquartered in Tempe, Arizona, tests nearly 4.5 million samples annually at three national laboratories in Dallas, Phoenix and Tampa that, combined, provide testing for more than 25 percent of the U.S. blood supply. About Blood Systems Blood Systems (www.bloodsystems.org) is one of the nation’s oldest and largest non-profit community blood service providers and operates community blood centers serving more than 500 hospitals in 18 states, biological products distribution services, a quality consulting group and a world-renowned transfusion medicine research institute. •Download high resolution photos for publication from: http://flic.kr/s/aHsjBZcQTL Business Wire http://www.businesswire.com/ Last updated on: 10/09/2012 16:00:03 . Share 0 inShare. Comments This commenting widget will be discontinued on October 1st, 2012 Echo 0 Items Admin Social Networking by Echo Login Login required, click here to begin Share This Page Follow subscribe in a reader send this to a friend . .... Advertising . 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So sorry, this gets so hard. I would say too, borrow or get a payment plan if you can't get insurance to pay. Regarding the job, there is little risk IMO. If it gets to be too much, you can always resign, if you find you can manage it, you will have the financial help you need. to save money we got rid of our nanny and got an au pair instead, which is much more affordable. Really wishing you all the best, there is strength in numbers, you have a lot of supporters here pulling for you and your children.

Originally she had really bad pain in one hip, she was unable to sit on the floor (imagine how much of an outcast she felt in second grade as they were always on the floor and she was on a chair for half the year.) within 60 days of Biaxin/Augmentin that went away. I saw that as a huge victory but she tells me now she is in constant pain. I have been in a bit of denial I think but I need to face it. Her pain now migrates, knee, leg, arm, feet (constant and usually both feet but the other pains are one sided). She has lots of vision issues, blurry vision and seeing color swooshes on people/things. She gets the feeling of bugs crawling on her which goes away if she slaps the area. The suicidality is gone (so thankful for that!) but she still feels sad and asks what is the point at times. Anxiety and OCD mostly gone. Obsessive thoughts mostly gone, I would say all the psych stuff is 70% better. She tested + (some IGG and one IGM I think) for Anaplasmosis, Ehrlicia, ROcky Mountain Spotted Fever. Three negative bart tests, I want to do Galaxy but can't pull her off the meds for four weeks, she tanks in a few days if I take her off. Negative for Babesia at Igenex, Quest and Sonoma County, and doesn;t seem to have symptoms of that. High Myco, MTHFR 677T and elevated ASO (we see Dr B for PANDAS too). Our LLMD does seem to think there is some merit in trying Rifampin, and I am starting to as well. She has been on Abx for 5+ months I think includng 60 days of Doxy. We have had quite a number of happy days, she has even slept in her room by herself all night for a number of nights, but the pain is always there. I totally blame the pediatrician first and am considering suing her, we live in NY and as I understand NYDOS guideline for IGM + Band 41 is to minimally retest or treat/restest. I am also considering writing here a long detailed letter with medical references so she never does this to another child. My moms instinct told me something was very wrong in 2010 but I listened to her. How I wish I had just thrown those symptoms into google! My biggest life regret.