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xh1688

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Everything posted by xh1688

  1. My DS14 started his first abx, Zithromax at end of May for three weeks. I noticed he gained weight a month later. He started the first combination abx (Zithromax and Certin) four days ago. His tummy looks bloating a lot in the a few days. He did not eat extra but instead ate less at meal time (still needs 3-4 snacks each day). His loose/watery stool started on day 2 on the combination abx and still continues today. What does this symptom mean? Do antibiotics cause weight gain? Any advices will be appreciated!
  2. My DS14 started Zithromax and Ceftin three days ago. Rifampin will be added to his combination abx this weekend. I found out it is a red capsule. Since my son is very sensitive to any artificial ingredients, I’m trying to find a dye free Rifampin. A compound pharmacy can make it but my insurance won’t cover it at all. It is hard to work if he needs to take Rifampin more than three months. It costs $250 for 30 capsules. Does anyone know if dye free Rifampin in the market? Are many other antibiotics for Lyme/Bartonella treatment also made with dyes? For example. Bactrim, Doxy, tinidazole …..? Thank you in advance!
  3. My DS 14 started Zithromax and Ceftin three days ago. This is his first run with combination abx. Our LLND also increased probiotics to 200 billion per day (My boy only took 25 billion in past five years). Note: My DS is allergic to Amoxicillin! --Day 1: No obvious change but the stool seemed softer than before. --Day2: --His stool became loose and kind of watery. (not very watery, not sure if it should be considered diarrhea) --The odor of the stool was extremely MILD and is big different smell than his stool before (In past years, his stool usually had very strong odor that can still be smelled for 1—2 hours after it was gone by flush the toilet) Is the loose/watery stool an allergy symptom that he cannot tolerate Ceftin? (He had NO such reaction when first time took Zithromax in June so it is not from Zith) He took the two antibiotics with other supplements include multivitamins (only apart 10-15 minutes. I have moved these supplements to afternoon today). --Is it possible that the watery stool was caused by the possible interaction with antibiotics and vitamins especially B12 that may impair the efforts of the antibiotic to kill the source of the infection? 3. Is it probably because his dose of probiotic increased too much on one day? He got another watery stool in 10—15 minutes after taking 200 billion probiotic yesterday afternoon. -- I called the clinic and the LLND recommended increasing dose of the probiotic and continue Ceftin for couple more days. But I felt something not correct in my instinct. Any input/advice will be appreciated!
  4. Thanks for the sharing. 1. Did your child take Bactrim also for treating Bartonella? 2. How much progresses have you seen in the combination with Bactrim? 3. How many abx runs you did include Bactrim? Thank you!
  5. jan251, Thanks for the sharing. It is an encouragement ! 1. Did your child take Bactrim for treating Bartonella? 2. How much progresses have you seen in the combination with Bactrim? 3. How many abx runs you did include Bactrim? Thank you!
  6. I heard many good feedbacks about Bactrim and really considered adding it to my son's combine abx. However, I found out that people who have MTHFR mutation cannot take Bactrim. My DS was tested heterozygous for MTHFR C677T and negative for A1298C, which may effect folate metabolism to 35%. Just wondered if anyone else with MTHFR issues take Bactrim without problems? Thank you!
  7. Thanks everyone for your sharing. We end up to get Ceftin that my insurance covered. Hopefully it will work.
  8. Thank you! Plum99. I just got Ceftin that my insurance covered but it needs to be taken twice a day. My DS will be on combination with Zith, Ceftin and Rifampin.
  9. Thanks everyone for your sharing and advices! bobh: thank you for the link. It is interesting!
  10. My DS 14 is allergic to amoxicillin so my LLND prescribed Suprax for him. However, I didn't find much information and only heard a few feedbacks with no change or worse symptoms. It also is extremely expensive ($830 for only 30 capsules). My insurance doesn't cover it. Please share any other antibiotics in class of cephalosporins that work greatly and most insurances will cover. Thank you in advance!
  11. My DS14 is having uncontrollable rage, anxiety and OCD and was found Bartonella rashes on his body. The rashes spread to other positions by the days. My LLND just prescribed Zithromax, Suprax (she mentioned it is an alternative to amoxicillin/penicillin, which my DS is allergic to) and Rifampin today. Zithromax and Rifampin seem common to be used for infection. But I didn't find some information about Suprax after a lot of researches. Only saw a couple posts from another forum with negative results. My insurance doesn't cover it all but I have to privately pay $830 for six weeks dose. Is this a new abx on the market? Is it effective and safe to children? Any sharing and advice will be appreciated!
  12. MY DS 14 was diagnosed with autism at age 2. Before 12 yo, although he had delay language/speech, motor skill, social skill, attention and sensory issues, he was a calmer, sweet and happy boy. He was full putty training at age 4 and was able to go to bathroom for both peep and poo-poo independently since then. His behavior suddenly changed in summer 2015. He screamed, jumped, hit himself and objects. Eight months ago, he started to ask bathroom frequently. (Physically, he can hold ½ to an hour). He crazily thinks/asks restroom EVERY WHERE. His rage, anxiety, OCD became worse by time. There are some purple streaks on his body and thus found out Bartonella. His Igenex IgG and IgM (repeated after three weeks antibiotic) were all negative. We’ll do further urine test. He is not on any abx or herbs at this time. I don’t know if he has other co-infections at this time, but a strange issue really concerned and confused me : Since summer 2016 (maybe earlier), he always has accident (poo-poo) on his underwear almost every day (1—3 times per day with small to most amount) . It is not diarrhea but it is soft. Since he cannot express the reasons in detail due his limited speech, I’m not sure it because he addicted to watching videos on the iPod too much or he is unable to control physically due the infection. When asked him, he responded that he should poo into the toilet but this continue happens. He changes his underwear 3-6 times a day (I have to hand wash his underwear because it smells very strong and sticks) Is it one of symptoms of infection? Anyone has had the similar situation? What is the effective solution? Any sharing/ input/advice will be greatly appreciated!
  13. Hi everyone, --My DS14 repeated IgM (Igenex) after three weeks Azithromycin back to negative. He seemed have die-off with Azithromycin but wondered why didn't see in his blood. I understand that some patients had negative result IgM at first test and positive after provocation but this didn’t happen to him. A mom shared that her son had negatives to antibody tests but got positive from Dot blot urine test. I’d have him to do this as one of tests for next step. However, since most of lab results my son did were “normal” and I wondered he may need more advanced tests for more accurate results. Do you think he may need to go Advance Lab for blood culture test directly instead Dot blot urine (Igenex)? I really want to dig out the trigger and address his condition as soon as possible because he is very miserable every day! Our LLND is so busy for many patients and I can’t wait until next follow up appointment weeks later. ---Moreover, he has some Bartonella symptoms (rage, OCD, anxiety, joint pain…I just noticed some rashes on his waist yesterday. Please see the pics on the attachment. Is this one of Bart symptoms?). I’m considering Galaxy test but heard someone from another forum did triple blood draw with negative result while she did have Bartonella symptoms. Did anyone do single draw first with Galaxy got negative result, and had positive with triple draw later? I wondered if it is worth to do with almost $900. Thank you in advance! Bart rash.docx
  14. Thanks for your sharing. Would you please explain more detail about Mitochondria support? Is it a supplement? Which brand are your using?
  15. Thank you so much HopeinHIM and SuzanneR! We just returned from vacation and my son was fine inoverall except more difficult sleeping. His repeated IgM from Igenex back to negative after three weeks Azithromycin. I understand that some patients had negative result IgM at first test but positive after provocation. I'm lost! What does this mean? He may have no Lyme but his symptoms triggered by other infections? Is it possible that he may have Bartonella or other co-infection when he have no Lyme? (Not good question but really want to know. He has not tested for Bartonella yet. SuzanneR thank you for the article!) Please help! Thank you so much!
  16. Sorry that I accidently put CBD as CBN. Thanks for the correction. I found the older posts but no one mentioned the spray.
  17. Hi parents, My DS 14 had "abnormal" IgG P41 and IgG P39 with LabCorp, but negative IgM with IGenex. Our LLND put him on Azithromycin for three weeks as provocation protocol and repeat IgM. I notice increased OCD, rage and anxiety. He even has more brain fog symptom. He said he is "Mad" most of the day. He complained that his finger hurt, teeth hurt, bone hurt.... He even asked to see his pediatrician and dentist. When he heard a new place we will go, he always thinks there is a restroom there although it is not (Post office, a park ...). He constantly asked "go to restroom" at the places although I told him 1000 times "there is no restroom there". He frequently asked restroom EVERWHERE. He had outburst with hitting, jumping and screaming 3--4 times a week. He seems easier to get anxiety than before. What does this mean? My LLND said she wanted Azithromycin makes "die-off" to his body. Is this die-off or a sign it is not a correct antibiotic for him? He has done three weeks Azithromycin and did blood draw. We are waiting for the lab results so he is not on any antibiotic. Our family is going to Disneyland two days later. Please share if any oil can temporarily help for rage and anxiety. He also is ASD. Any advices/ sharing will be greatly appreciated!
  18. Hi, I have heard the positive feedback with CBN oil for anxiety, rage and OCD. I consider to try it for my 14 yo PANS/ASD son who is in extreme rage and anxiety most of the day. Wondered if anyone here has tried CBN spray with the same effective result like CBN oil. I ask this because my family is going to vacation and It is easier for travel. Any sharing will be appreciated!
  19. Hi parents, My son's LLND prescribed THREE weeks (21 tablets) Zithromax for Provocation protocol. (His Igenex were negative but LabCorp has IgG P41 and P39 "present abnormal"). I understood that the LLND wanted to him have "die-off" from provocation to figure out if impossible Lyme there. But I do concern because most antibiotics only needs to be taken for 6 to 7 days. My insurance only cover 6 tablet in a month. Although I'm ok that pay the rest 15 tablets privately, I don't know if three weeks on antibiotics is too long and not sure if his sensitive body will tolerate. This is the second time that he takes abx. The first time was 14 years ago, when he was a four months baby. Any sharing/input/advice will be greatly appreciated!
  20. Hi parents, My 14 yo son did Shoemaker mold panel. The most of them came back to negative when looked at the reference ranges. HLA DRB1,3,4,5, DGB1 type: 2 sets of three alleles Mold toxin susceptible type: 9,3,53 My question: What specific susceptible with this number? Thank you in advance!
  21. Dear parents, My 14 yo son was born as a healthy and beautiful baby. When he was two months old, my previous house was remolded. He lived in the construction house for two months and exposed to a lot of molds, bacterial and new chemicals. I even saw the molds in the air when the old well was removed. When he was 2 years old, his first blood test results showed that his allergy levels to most molds were far beyond the highest scores from the test reference! He exposed to another mold place when we moved to a new home 3 years later. His second blood result was double higher than the first one! He was diagnosed as autism at age 2. He also is allergic to gluten and dairy. In the past ten years, I tried DAN!, homeopathic remedies, NIDS and MAPS but my son DIDN’T respond to any protocols except GFCF diet and MB12 shot. However, he was a calmer, happier and sweet boy. His behavior suddenly became aggressive in the summer of 2015 after he attended a summer camp couple times. He screamed, jumped, hit himself anywhere. He started to experience frequently using restroom after taking LDN couple weeks (Stopped LDN on Dec 22, 2016).. He had vomit and diarrhea 1/30 to 2/3. He took a classic homeopathic remedy, Sul-ac 30c on Feb 4th. A few days later, he started to ask for pee every a few seconds although he actually didn't get it each time. He is very miserable and desperately asks for restroom anywhere he went (grocery store, post office, gas station, his brothers' preschool even pointed to row of houses he saw when I was driving and said he wanted to go "there for restroom".) The behavior that repeated asking the same questions/ comments also became much more frequently. He has to repeat it every second although I or my husband have responded to him many times. He even stands out of the restroom and asks me "the men's bathroom, mommy" over and over and won't get in the door until I respond to him over and over. He also walks to my bedroom in the middle of the night and repeats the same questions and won't leave until I wake up and respond to him over and over. Another issue also became more severe is changing his mind when decides. For example, he usually asked that he wanted to wear his blue shoes after he has put his red shoes on and got in my car and leaving our house. It was about at least 1/2 hour or longer. Now, he changes his mind EVERY SECOND! He says that he is done for water drinking during the bedtime. When I'm going to take his bottle, he says that he wants to drink more water. I then give him the water bottle back, he says he is done after one drink. He again says he wants to more water when I'm trying to take the bottle away.... this repeat 10 times until I grab the bottle and leave his room. He is still yelling that he needs more water......He is out of control. Extreme OCD: he insisted to ask, “I want to pee-pee in downstairs.” after he did this, then said, “I want to pee-pee in upstairs,” after he did, he asked, “I want to pee-pee in mommy’s bathroom (there three bathrooms in my house). He usually only did pee at the first bathroom but just flushed the toilet at other bathrooms. But he must do this before staying on his bed for sleep. His hand writing is odd worse but sometimes became little better liked his baseline, and then became difficult to be recognized. Other symptoms: 1. Nail biting, 2. Throat uncomfortable (nausea or threw up when the food is too warm or cold). 3. Joint pain (Complains a lot that one of his thumbs hurt. It looks little swelling but we didn’t find the reason after seeing three doctors included an orthopedist.) Our pediatrician ordered Lyme test from LabCorp. The most results were negative except IgG P41 and P39 “Present abnormal”. We had the first appointment with a LLMD a few weeks ago after our pediatrician mentioned that my son seemed have PANS symptoms. However, my son’s lab tests for Lyme below from Igx back to all be negative. Borreliosis – burgdorferi IFA-G/M/A (negative) Western B lot IgM- IGX and CDC/NYS (negative) I was disappointment because I expected the positive results so that we can start the treatment right way for him. He is really struggling every day and this has made me overwhelming...... I understand that an individual who has had mold toxins in his body may be unable to respond to treatments headway until these toxins are removed. But I don’t know if the negative result means that he has no Lyme but maybe other medical issue. Is it possible that mold toxins blocked the pathway so we cannot see anything in his blood although the infections really exist in his body? I have heard that some Lyme patients had negative results while they did have Lyme symptoms. ---Did anyone have negative results from IgX but got positive results from Culture test via Advanced Labs later? ---Please share if you had experience with Dr. Shoemaker’s or other mold tests and treatments. ---Has anyone had experience with Dr. Nail Nathan? Any advices and sharing will be greatly appreciated!
  22. Dear parents, In the past ten years, I tried DAN!, homeopathic remedies, NIDS and MAPS but my ASD son didn't respond to any protocols except GFCG diet and MB12 shot. I listened one of doctors talking about Lyme recover and mold illness. I just realized that my son's organs and immune system probably were damaged by the toxic molds (he was exposed to molds, new chemical and bacteria during my previous house remodeling when he was two months’ baby). When an individual's immune system cannot work properly, his body gets confusion for the treatments and may resist to accept it. I guess it was why my son didn't respond to the treatments we tried. He also is suspected to Lyme and I’m on the way to start the treatments. However, I’d treat his mold illness and remove the toxins from his body first. Please share if you have had experience with Dr. Raj Patel, Pacific Frontier Medical or have worked with both of them in Northern California. Please PM me and I’ll appreciate if can share more details. Thank you very much in advance!
  23. Hi bws1565, Thank you for your reply. Did you mean your child's ASD symptoms significantly reduced after addressing his/her Lyme or PANDAS issue? Would you please PM to share more in detail? Thanks a lot!
  24. Dear parents, I'm desperately looking for an excellent LLMD who has experience with PANDAS/PAN and Lyme in Northern California. My son's symptoms become worse day by day and really needs right medical care as soon as possible! Please send me the referral and share your experience! Thank you so much in advance!
  25. Hi parents, I’m new here. My 14 yo ASD son currently is experiencing uncontrollable enuresis. He now asked for pee every a few seconds although he actually didn't get it each time. He is very miserable and desperately asks for restroom anywhere he went (grocery store, post office, gas station, his brothers' preschool even pointed to row of houses he saw when I was driving and said he wanted to go "there for restroom".) The behavior that repeated asking the same questions/ comments also became much more frequently. He has to repeat it every second although I or my husband have responded to him many times. He even stands out of the restroom and asks me "the men's bathroom, mommy" over and over and won't get in the door until I respond to him over and over. He also walks to my bedroom in the middle of the night and repeats the same questions and won't leave until I wake up and respond to him over and over. Another issue also became more sever! e is changing his mind when makes a decision. For example, he usually asked that he wanted to wear his blue shoes after he has put his red shoes on and got in my car and leaving our house. It was about at least 1/2 hour or longer. Now, he changes his mind EVERY SECOND! He says that he is done for water drinking during the bedtime. When I'm going to take his bottle, he says that he wants to drink more water. I then give him the water bottle back, he says he is done after one drink. He again says he wants to more water when I'm trying to take the bottle away....this repeats 10 times until I grab the bottle and leave his room. He is still yelling that he needs more water......He is really out of control and I'm getting crazy with this situation. His teacher also complained that she is unable to handle this. Since this week, he started to keep standing up and down and wants to go out every couple seconds at classroom, and at home when he is eating on the table. What does this symptom mean? We have not started to see any PANDAS/PANS doctors yet but the intake appointment was scheduled three weeks later. Because things seem become worse every day, I need immediate help! I’ll appreciate any sharing/advices!
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