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Thank you! Sheila

Dear parents, Please refer a great AIT provider in San Francisco bay area. Thank you!

Dear all, Please refer a great AIT provider in San Francisco Bay Area. Thank you!

Dear all, We are desperately looking for a psychiatrist or neurologist in San Francisco Bay Area who is experienced to Autoimmune Encephalopathy, and is willing to prescribe IVIG. Any referrals and sharing will be greatly appreciated!

Dear all, I'm looking for a medical doctor (Not ND) who is able to prescribe IVIG in San Francisco area. Thank you in advance!

Dear all, My DS 16 has been on combined antibiotics for two years. His Lyme lab result always is negative (Only IgG P41 and IgG P39 “Present Abnormal”) but Bartonella is active. Since his condition seemed stable, I started to reduce the dose slowly for Rifampin and Azithromycin at beginning of July. A month later, he was completely out of antibiotics. His overall symptoms (rage, OCD, anxiety) seemed similar (not worse) than before stopping antibiotics. However, an odd behavior started a few days later when began to reduce dose of Rifampin. He took his shirt off and threw to the toilet.(the first day with this behavior also the first dose of 5 HTP due his difficulty to sleep. But he only took it for two days). When continued to the less dose of antibiotics and until was completely out, the disrobing became worse and worse and much more frequently. He gradually also took pants, underwear and shoes off. He did this at home only at beginning but later at school. Today, after he is stopping all antibiotics for two months, he even did this at a restroom in a park. He seemed desperately want to off from his clothes and lifted his arms to pretend flying. He even did this in my car. He also unfastened seat belt constantly and tried to open the door when I was driving on the freeway. At home, he insisted to take all clothes off although I asked him to put back on again and again. He took off in only one second when I turned to get something. He threw all clothes into water (toilet or sink) once he took off. He even threw CDs into the toilet and flushed. I’m really overwhelming and getting crazy because I have no ability to control this since he is taller and stronger than me… Even worse, he is unable to explain why he does this with limited language due his autism. Has anyone experienced similar situation after stopping antibiotics? I don’t think 5 HTP caused it although it happened on the first day, he took this supplement. He did 5 HTP when was younger (at age 12—13) without problems. Is it a reaction from brain after completely off from antibiotics? Any tips/advices will be greatly appreciated!

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Dear all, My DS 15 has Bart purple rashes on his body for since last year. He started Biaxin (replaced Azithromycin) nine weeks ago. 500 mg twice a day (continue with Rifampin). Since he had more aggressive and uncontrolled behavior, it was reduced to one Tab in the morning weeks alter as the recommendation from our LLND. His outburst was reduced, less OCD but took longer time to fall asleep. Starting from three weeks ago, he again had outburst 1-2 times per week. He hit the wall, counter, door and even hit me and his grandma uncontrollably. He shook his arms (new symptom), took his shirt off and dumped on the floor, threw his glasses, jumped, screamed and ran. He seems think about things in opposite way. (For example, he complained the food is cold when it is very hot. He said he is happy when he looks sad, or said he is sad when he actually is not). He may have an outburst suddenly with yelling. His repeating talking came back. He insisted to ask to “I want to go the shopping mall / piano lesson NOW” at bed time over and over although I responded him “tomorrow and Tuesday” multiple times. Two days ago, he even said he wants to put his glasses to the toilet and flush it. He took his watch off and dumped it somewhere, but he couldn’t remember. He also complained that his stomach “hurt” frequently. He had little watery stool for a few days until yesterday. His underwear again always has little watery stool (He did have this symptom before starting the treatment and got better when taking Rifampin combo with Azithromycin. It came back this time) His sleeping became obvious worse. I asked him to go to bed 10:00 –10:30 pm but he got up from the bed and walked to me asking “please take my watch off (on)/ I want to drink water (although I told him the water bottle in his bedroom and he knew) over and over. He cannot fall asleep until middle of the night and wake up at 5:00 to 6:00 am. Not sure if Biaxin did something negatively to him. But Rifampin (on 600mg) has been very helpful for him. 1. He seemed frozen for 10 seconds during piano playing or speech therapy and no response when I called him. Is it kind of seizure symptom? 2. He seemed better when was taking Rifampin combo with Azithromycin but LLND mentioned that antibiotics need to be changed every three months. My DH asked me to STOP all antibiotics immediately because he thinks these “drugs” caused his son “having illusion”. He said “He is now turning from a autistic patient into a mental patient. I suspect he is now having imaginations in his mind which trigger his recent behavior. This kind of behavior is showing him to have mental problem…” He concerned if my DS will have more aggressive behaviors when he grow up. I knew it is because of the infection and it needs to take time to be treated. But I don’t know how to persuade my stubborn husband that the boy needs to continue the treatment. 3. Can anyone share what will happen if take all antibiotics off when the infection is still there? I’m very miserable and feel hopeless. Any advices/sharing will be appreciated!

Dear all, My DS 15 has Bart purple rashes on his body for since last year. He started Biaxin (replaced Azithromycin) nine weeks ago. 500 mg twice a day (continue with Rifampin). Since he had more aggressive and uncontrolled behavior, it was reduced to one Tab in the morning weeks alter as the recommendation from our LLND. His outburst was reduced, less OCD but took longer time to fall asleep. Starting from three weeks ago, he again had outburst 1-2 times per week. He hit the wall, counter, door and even hit me and his grandma uncontrollably. He shook his arms (new symptom), took his shirt off and dumped on the floor, threw his glasses, jumped, screamed and ran. He seems think about things in opposite way. (For example, he complained the food is cold when it is very hot. He said he is happy when he looks sad, or said he is sad when he actually is not). He may have an outburst suddenly with yelling. His repeating talking came back. He insisted to ask to “I want to go the shopping mall / piano lesson NOW” at bed time over and over although I responded him “tomorrow and Tuesday” multiple times. Two days ago, he even said he wants to put his glasses to the toilet and flush it. He took his watch off and dumped it somewhere, but he couldn’t remember. He also complained that his stomach “hurt” frequently. He had little watery stool for a few days until yesterday. His underwear again always has little watery stool (He did have this symptom before starting the treatment and got better when taking Rifampin combo with Azithromycin. It came back this time) His sleeping became obvious worse. I asked him to go to bed 10:00 –10:30 pm but he got up from the bed and walked to me asking “please take my watch off (on)/ I want to drink water (although I told him the water bottle in his bedroom and he knew) over and over. He cannot fall asleep until middle of the night and wake up at 5:00 to 6:00 am. Not sure if Biaxin did something negatively to him. But Rifampin (on 600mg) has been very helpful for him. 1. He seemed frozen for 10 seconds during piano playing or speech therapy and no response when I called him. Is it kind of seizure symptom? 2. He seemed better when was taking Rifampin combo with Azithromycin but LLND mentioned that antibiotics need to be changed every three months. My DH asked me to STOP all antibiotics immediately because he thinks these “drugs” caused his son “having illusion”. He said “He is now turning from a autistic patient into a mental patient. I suspect he is now having imaginations in his mind which trigger his recent behavior. This kind of behavior is showing him to have mental problem…” He concerned if my DS will have more aggressive behaviors when he grow up. I knew it is because of the infection and it needs to take time to be treated. But I don’t know how to persuade my stubborn husband that the boy needs to continue the treatment. 3. Can anyone share what will happen if take all antibiotics off when the infection is still there? I’m very miserable and feel hopeless. Any advices/sharing will be appreciated!

Thanks for all of your sharing! Happy Holidays!

Dear all, My DS 15 has been on Klaire Labs probiotics for five years. We switched to Renew Life couple months ago and noticed his OCD reduced and softer stool. However, I just found out Renew Life Formulas has been cited for Prop 65 violations. Please share good probiotics with other brands. My son needs to take 200 billion each day as he is on two antibiotics. Thank you in advance!

Uncontrollable yelling! Is it yeast flare? My DS 14 tested negative to Lyme but has Bartonella rashes on his body. He has been on Zithromax for 3 months and Rifampin for 2.5 months. His OCD slightly reduced and sleeping seems little better. He even used more words than before (He is ASD with language delay issue). However, his rage and anxiety are still at the same level, screaming, hitting, yelling…. He started Japanese Knotweed and Curcumin (both herbs treat inflammation) three weeks ago. He constantly makes more non-verbal yelling, talks less, and has some tiny rashes (skin color) on his arm. His yelling is really uncontrollable and bothers everyone who around him. Moreover, he is MUCH sensitive to sounds than before. He covers his ears immediately when people around him just start to talk with normal voice. Is it a symptom of yeast? I feel something missed but don’t know what it is. Did anyone have experience with antibiotics and herbs combo protocol? Your sharing may help me. Thank you in advance!

My DS 14 (Also ASD with language delay) started Azithromycin and Ceftin on July 23, 2017, added Rifampin August 13, 2017. He did herx but we notice small changes. Positive: (1) Better sleeping, (sooner to fall asleep and didn’t wake up frequently). (2) Rage slightly reduced in week 3—5. (3) OCD slightly reduced in week 5. (4) Speaks something new (never or seldom said before). Negative: (1) Started to yell loudly and make uncontrollable noise rather than using words in week 5 without reasons. Had more frequently outbursts and worst happened before bed time. (broke the switch and outlet on the wall by hitting and hit everyone who tried to touch him). (2) More enuresis symptom. Complained his “finger/nail hurt” again. My son got all negative lab results (blood test) for both Lyme (Only IgG P41 and IgG P39 “Present Abnormal”.) and Bartonella although he has obvious Bart symptoms and Bart rashes (purple stripes) on his body. Our LLND didn’t want to continue providing the combo antibiotics without positive lab results. She wanted to do a urine test after a provocation protocol. It needs to stop all three abx for four weeks, then Day 1—Rocephin (shot) Day 2—5 Suprax , doxycycline and Tindamax. (oral) My son stopped antibiotics on 9/15, one week ago. (1) His rage immediately became double worse on the same day (uncontrollable hitting everything included me and screaming loud). (2) Complained that he has headache and feel sick. (3) OCD and difficult sleeping came back: Repeating the same routine over and over before bed time, constantly walked to my room and asked the same questions over and over before falling asleep and middle of the night. Took much longer to fall asleep and woke up very early. (4) He got cold and has had runny nose, cough and headache for three days. (He was not easy to get cold in past years.) (5) Continuing frequently ask for restroom every where. He is VERY miserable and his rage sometimes is out of control! He has to grab and pinch my hands/fingers although I yelled “it is hurt”. Damaged the shutter, and switch on the wall. He hit me like hit furniture. I’m unable to handle it because he is taller and stronger than me. My broken heart has more pain than the bruises on my arms he hit! We have worked with this clinic for six months and this is my son’s first combo antibiotics.(Spent too much time to do a lot of and repeated lab tests in first a few months) The LLND has mentioned if my son showed quicker regression after stopping the combo abx, it is a sign of Bartonella. It the regression come slowly, it may be Lyme. She didn’t tell what is the sign if my son has both Lyme and Bartonella. It looks like my son has obvious Bartonella. Should we continue the combo abx with switch one of them (I believed that my son didn’t respond well to Ceftin but ok with Zith and Rifampin? I cannot image and really concern what will happen if his “near crazy” rage continue for FOUR weeks! Any input/advices will be appreciated!

Hi, Please share if any of you have had positive or negative experience with one or more of the treatments below. Medical Ozone, Nutritional Infusions, LDA/ LDI, Botanical medicine, Oral Micronutrient therapy German biologicals. Thank you!

My DS 14 has been on Azithromycin and Ceftin for 7 weeks and on Rifampin for 4 weeks. I did NOT see the real improvement on rage, OCD and anxiety. His behavior even becomes worse. Screaming, hitting, more enuresis even hit me and others. His rage really becomes uncontrollable. More enuresis symptom. He cannot stop to ask for restroom anywhere and any time! The only positive thing is he trying to speak little more, and his brain seems little clearer but it is not consistent. (He is also autistic with language delay). He started to bite his nail 2.5 years ago. I first time saw the parasite look worms in his stool three weeks ago! Does this relate to Babesia? He has Bartonella rashes on his body although the Igx blood result was negative. I heard some positive feedbacks about Bactrim. Does it work for patients who have Lyme, Bartonella and Babesia at the same time? I feel he didn’t benefit to Ceftin. He started to have loose stool when started Ceftin. Can Bactrim replace Ceftin? Thank you in advance!

My DS 14 is on forth week with Zithromax and Ceftin, and the first week on Rifampin. He has had loose stool on Day 2 with Ceftin and still has it but not every day. He is taking 200 billion probiotics. I didn’t notice obvious changes but his rage seems slight decrease although he still has outburst. His OCD stays on the same level with lots of repeating. Still constantly asks for restroom everywhere. Sleeping seems little better. He had tantrums on Day 2, Day 3 and Day 4 when added Rifampin. Screaming and hitting came back. But he tried to use his words little more (He is also ASD with language delay) and even sang the music notes when was playing piano. How often rotate/change combination antibiotics (three for each regimen) will get best benefit? Six weeks? Eight weeks? If a combination will work effectively, how long should be expected to see the progress after herx? How can I figure out if regressions or new symptoms are herxs or abx intolerances? Many thanks!

Hi parents, My DS 14 has been on Klaire lab digestive enzyme for 5 years How often rotate enzymes is best for gut? Please share some good brand enzymes, which are free of glute, dairy, yeast, sugar and soy. Thank you in advance!

So，your son actually took 2 capsules for Sach b, and also two capsules Renew Life Ultamate Flora? Once you were done for abx, how many billion for each probiotic you gave to him? Thanks a lot!

Thanks for the great sharing/ advice! How many billion Sach b and how many billon Renew life (Is the one with Extra Care?) for the total 200 billon? Thank you!

What was the reason that your child took mix probiotics but not single one? Was it recommended by your doctor? Thanks!

Thanks for asking. No, it still continues after two weeks! He is taking 200 billion probiotics daily.

My DS 14 started his first combination antibiotics two weeks ago. He is on Azithromycin and Ceftin. Since he added Liver GI Detox (brand: Pure encapsulations) per the recommendation from his ND four days ago, his repeated talking and OCD thinking significantly increased! He asked for going to restroom Every a few seconds! He seems have more severe odd behaviors. For example, he insisted asking for restroom at Whole Foods Market after we left there and got home. He actually did go to the restroom many times when we were shopping at Whole Foods. Although I responded him "all done Whole Foods, we're home now", "next time we can go again", 100 times, he still kept asking and got really upset even had outburst! He always asked the restroom at the places we were gone, and insisted that he wanted to use the restrooms at a bank or a park there is NO a restroom there. He also has to do all unnecessary things repeatedly for EACH step before going to bed. (This issue is not new but became worse) 1. Had to ask for drinking water 5--6 times. After I sent the water bottle to his bedroom, having him to come to kitchen in the downstairs to drink or even leaving the water bottle on the counter at the hall way when I was taking shower, he still came out of his bedroom and kept asking for water when I was wash dishes.... 2. He had to get a bandage for one of his fingers that has no bleeding or hurt. 3. He had to change his underwear 2-3 times after he changed although it was clean. He takes this Liver GI Detox with 200 billion probiotics, multivitamins and Catechola Calm in the afternoon. Don’t know why it made such reactions to him. Moreover, he started to have loose/watery stool on Day 2 with Ceftin and it still continues. No other changes so far. Any advices will be appreciated!

Thanks for this information. Did you try any medicines they made with good results?

Thanks everyone for the sharing/ advice! My son actually has taken probiotics (Klaire Labs - Ther-Biotic Complete 25 billion) for 5-6 years. Our LLND recommended 200 billon per day during the combination abx. So, he is taking Klaire Labs Ther-Biotic Factor 6 (100 billion) 2 capsules a day. But his loose/watery stool still continues (today is day 5). It usually came out after taking the probiotics 15 to 30 minutes. Not sure if this is not right probiotics for him or the dose increased too quickly and too much! (jumped from 25 billions to 200 in one day). How many billions did your kids take daily? MomWithOCDSon: Does sachromycces boulardi contain dairy and gluten ingredients? My son is allergic to them. Which brand are you using? mama2alex: I saw Custom Probiotics adult formula from amazon. Thinking it may be not the one you give to your child. Would you please send me the link or full name of the one you are taking? Thanks a lot!

Hi, I'm looking for a compounding pharmacy that can make dye free antibiotics in North California in Bay Area. Please share if you have used any one and have had good experience with. Thank you in advance!