philamom

kmom- my daughter's taste buds have changed. She was always a picky eater, but it has gotten much worse. A month ago, I reminded her how she used to eat more food choices, and she told me that within the last few years, everything taste different. Everything taste funny to her!

Good Article LLM. It's an easy to understand article to share with others. Thank you for posting!!

Of course, "current evidence" means three years ago. Some will also say children with PANDAS can't react to just being exposed to strep. Most of us know that is not always the case. Some children seem to react, others don't. My daughter does react to probiotics with S. Therm in it...not sure if it's the strep or some other component. We avoid it. We do like Klaire Detox Probiotic--which doesn't contain it.

Nice Vickie! Thanks!!

My daughter takes Minocycline 50mg for Lyme co-infections. No problems so far. You need to take an hour or two before bedtime. Also need to avoid prolonged sunlight.

Michael- is it possible to add it to a food mixture. Maybe some sort of green smoothie. Or would it diminish some of the medicine. Good luck with your new treatment!

I would feel more comfortable with Igenex. Burr guidelines: Adults 200mg bid with food. doses of up to 600mg daily are often needed.

So sorry Dawn! Sending prayers!

Praying for your family and some relief soon!

Yes...YIKES! Enough there to be concerned! Yesterday, I found two ticks in my house. I have them in plastic bags in my garage. Monday, I have an estimate scheduled to have my propery sprayed...I plan to ask what type they are. Before I knew about lyme, I would have never guessed them to be ticks (small).

A Little Girl’s Rocky Road to Recovery Lucy Barnes Nicole was nine years old when the nightmare began. Although her precious life was slipping away, physicians at some of the nations most well known hospitals were unable to determine the cause of her ongoing illness. Nicole had a history of a tick bite and lived in a Lyme endemic area in Maryland. She had multiple Lyme symptoms and a positive blood test for Lyme, yet doctors refused to explore tick borne diseases as the cause of her deteriorating condition. They not only dismissed her mothers concerns about Lyme disease, they emphatically stated it absolutely was NOT Lyme disease causing the child’s complaints and symptoms. Unsure of the source of Nicole’s problems and how to treat her, doctors eventually suggested electrical shock treatments. Nicole’s mother, Anne, refused to consider the shock treatments for her child and went on a search for answers. Thankfully, it all came together with the help of a dedicated doctor, an Internet support group, and the strength of a loving mother. Together they saved this little girls life. This is Nicole’s story. Approximately six years ago Nicole began complaining about flu like symptoms after a tick was removed from her ear. The many doctors visits, endless tests, and thousands of dollars in medical expenses provided no explanation and no relief from her recurring symptoms. Nicole suffered with severe headaches, sore throats, fevers, stomach aches, fatigue, eye pain, and ringing in her ears. She developed a balance problem and constant dizziness. Nicole’s pediatrician in Maryland eventually dismissed her complaints and indicated her problems were all in her head. Doctor after doctor proved to be no help. Nicole’s physical symptoms continued to worsen and soon spiraled out of control. Her hands and arms began to jerk involuntarily. She was pale, ran a low grade fever, and eventually became malnourished and dehydrated. She stopped communicating with her family and no longer socialized. She was too sick to attend school and became extremely depressed, developed anxiety problems, and was unable to eat. After a year of searching for answers another Maryland doctor diagnosed Nicole with “school phobia”. He insisted Nicole just return to school and “get over it”. Frustrated by the doctors attitudes and lack of care, Anne requested her daughter be admitted to a well known hospital in a search for answers. After twelve hours of waiting in the lobby and arguing with insurance companies, the little girl was finally admitted to the psychiatric ward. Her physical condition had deteriorated to the point that she had to be placed on a feeding tube for nourishment. She was diagnosed with depression and was given several antidepressant medications in an attempt to force her to be “normal” again. Nicole’s physical condition continued to go down hill during the six weeks in the hospital and her mother grew even more concerned. To make matters worse, Nicole began hallucinating and had bruises on her from falling out of her bed at night. Although she pressed the issue, Anne was repeatedly told by the many so-called specialists at the hospital that Nicole couldn’t possibly have Lyme disease because she didn’t have a rash or swollen joints. The doctors couldn’t pinpoint the cause of Nicole’s problems, but they were positive it couldn’t be Lyme. Chronic fatigue syndrome was finally offered as an explanation for Nicole’s physical complaints but Anne was not willing to accept another unsupported diagnosis. She decided she had to take matters into her own hands and she began researching Lyme disease on her computer at night, after spending her days in the hospital with her daughter. During her search, Anne discovered the Lyme Net site which had an online support group. There were over 3,000 members at Lyme Net, many who had been dealing with the same type of attitudes from doctors that Anne was experiencing. Anne posted Nicole’s history and said of her current hospital stay, “She states she does not feel any better at all. They (the hospital) continue to tell me definitely not Lyme. I am so very scared. I live in Maryland and will travel anywhere for my daughter to figure this out. Please help me, the hospital continues to say it is not LYME. Is there anybody out there to assist me before it is too late? Thanks for taking time for me and HER!” The responses Anne received were overwhelming. Lyme Net members had kind words for both Anne and her daughter. Their personal experiences with infectious disease specialists, neurologists, and other physicians over the years taught them that the medical community all too often overlooks or rejects the possibility of Lyme and they warned Anne not to give up. The volunteers suggested that she learn all she could about Lyme and tick borne diseases and provided her with literature and medical abstracts. They also suggested Nicole see the world’s leading tick borne disease pediatrician who has treated thousands of children, Dr. Charles R. J. Anne made a last ditch effort to get her daughter help at the hospital in Maryland. Once she learned more about Lyme and tick borne diseases she approached the doctors again. Returning home disappointed, she told the online group, “The Dr. I saw at the hospital was horrible! He told me my daughter positively does not have Lyme before he even looked at her! He guaranteed that Lyme is rare. When his assistant came in I mentioned running the Babesia and Ehrichlia tests. They looked at each other and didn't even know what I was talking about.” Anne took her daughter out of the hospital and went straight to Dr. Jones office in Connecticut. The trip paid off. After nearly three hours of examining Nicole, Dr. Jones suspected it was Lyme disease that was causing the problems. He tested her for other tick borne infections while she was there and ruled out other possibilities. Totally exhausted from the trip, Anne returned home and posted this message to her new friends who were waiting to hear the news, “It was the longest ride up and back with a child that is that miserable and sullen.” She went on to say, “I thank everybody out there. I couldn't have done any of this without you all! My love and thanks to all!” As it turned out, Nicole actually had three tick borne diseases, Lyme, Bartonella, and Babesiosis. When the results were in, Anne posted: “Dr. Jones, I love him! He is so sweet. The results show that she does have Lyme, is positive to the HLA-DR4, which means she will have the symptoms worse, and she does not have Ehrichlia but does have Babesia and Bartonella. He (Dr. Jones) is the sweetest, dearest man, and smart. He takes his time, you don't feel rushed. I just can't say enough good stuff about him. He also told me to tell Nicole AGAIN that she IS "fixable"!!!!” Nicole immediately started treatment for the multiple infections. With Dr. Jones skillful guidance and a mothers love and determination, Nicole began to improve. It has been a rough road to recovery with expected ups and downs but this beautiful young lady is now back in school and is smiling once again. She was recently voted student of the month and is on the honor roll. Anne wants others to know they are not alone in the fight to get diagnosed and treated for Lyme and other tick borne diseases. She recently shared some of her feelings: “I want everyone to know that I was pretty much on my own except for the Lyme friends I made and the Lyme doctors who stood by me. My family found it very hard to support me because when two of the worlds leading hospitals insist she doesn’t have Lyme, how can you not believe them? My instincts told me different. I believe a mother knows her child and knows what is best for them. Doctors need to be more open minded and listen to parents. They judged me so wrong, I only wanted the best for Nicole and now she is on her way to recovery. I am so thankful for the out of state doctors and the few doctors here in Maryland that believed in me and followed through. I thank everyone who has helped and supported me and been there when I needed help. My message to anyone with chronic Lyme is don't ever give up! It may take a long time but never never give up. There is hope for everyone, you just have to find the right doctors. And a special thanks to all the doctors out of state that put up with my persistence. I drove them crazy. I don't know how they stuck with me, but I thank God they did.” Sign in Terms Report Abuse Print page | Powered by Google Sites

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Research shows that Zith actually DELAYS the resolution of a sinus infection. Can be googled or on Pubmed too Im sure. Just the chemical structure of Zith. Augmentin works becuse it is more specific for upper respiratory infections which would incl sinuses.I usually add on augmentin when DS gets a sinus infection and it resolves in a couple days. Thanks for the info. I switched to Augmentin last night. How is your son doing?

My daughter never had "symptomatic strep", even during the (only) two times she tested positive by a swab culture. Our ENT also said he would remove her tonsils with a letter of recommendation for PANDAS. I often wonder if I should still consider it. She's almost 10, and I know it becomes more difficult to tolerate the procedure with age...right?

Based on my younger dd's experience and several posts on this topic, sometimes the docs don't realize how bad the tonsils are until post-surgery. After my older dd11's IVIG, we went back for a check-up with Dr. K about 9 weeks later and took dd7 with us for a once over. Dr. K recommended having dd7's tonsils removed based on physical exam (they were large, but not "kissing"), mild symptoms and hx of very elevated aso/dnase b titers Neither of my girls ever swabbed/cultured positive for strep ever, but must have had asymptomatic infections since both had markedly elevated ASO and anti-DNAse B titers. I found a local ENT who agreed to remove her tonsils based only on Dr. K's recommendation; said he would be the "technician" for surgery, but he could not recommend removal based on what he observed or her history. After the surgery was completed, he told me her tonsils were a mess and clearly indicated chronic infection he was not able to appreciate during pre-operative physical examination. Sometimes, it isn't so easy to find a cooperative ENT, but maybe your pandas/lyme doc can make the recommendation since the pediatrician will not. Did you have your older daughter's tonsils removed also?

I like this. Simple, but informative read. Thanks for posting!

LLM- High dose Augmentin is usually what takes care of my sinus infections. I'm on the zith for something else. I've been taking Culturelle, and so far, no problems with yeast. Thanks for the reminder! SF Mom- where can you purchase the Notatum Quentans Nasal Spray?

I'm looking at these products because they seem to be fairly safe (tho who knows what research will reveal 20 yrs from now). Better than deet, is my thinking. I've read in the past that some of the ingredients in sun block are carcinogenic, so in trying to protect against skin cancer, you might be increasing the odds of something else. IMHO, overnight exposure to these ingredients are probably better than an overnight exposure to an attached tick. These products lose their efficacy over 3-4 hrs if not sooner, so I'm guessing any risks decline over time as well. But maybe I'm just making myself feel better. You can only do your best. I agree. Thanks!

Score one for JAG10 I'm sure you're aware, but dog ticks can also spread TBI's, specifically some of the co-infections. GRRRR Don't let the kids throw their hats/visors or batting helmets on the grass either. We lay out a tarp to try to minimize the lice/tick/gross PIAs from hitch-hiking home with anyone. I just ordered my husband, an avid golfer (who doesn't use enough prevention--adding more anxiety to my life), a baseball cap and socks with insect shield (last 70 washes). I ordered a sun hat for myself as well.

laure- praying this brings relief! I'm on zith 500mg daily and managed to get a sinus infection. It's now day eight and not letting up...so off to the doctors tomorrow. I was kind of shocked the zith wouldn't take care of it. I'll wait two days and probably switch to Augmentin -- what works in my case. Is Augmnetin one of the abx your daughter is taking? Anyway, thinking of you & your daughter!!

Score one for JAG10 I'm sure you're aware, but dog ticks can also spread TBI's, specifically some of the co-infections.

I like the Avon Bug Guard plus Picaridin insect repellent towelettes & spray. My only concern is that my daughter wont bathe everyday. Are these products (picaridin/deet) safe on the skin overnight? I would like to find something I could use daily for protection while at school (2 recess). Any suggestions?

Yesterday, two kids in my dd's class came back from recess with a tick on them. Today, my daughter said there was talk of more. The teacher asked the kids to tell their parents when they get home to check them for ticks. Their recess location backs up to a small woodland area.

Thank you!

AMEN! (lol)