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MyLighthouse

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    MyLighthouse got a reaction from Johnsmom in OCD caused by other infection besides Strep   
    My daughter is 14 and she has high level of mycoplasma. Her main issue is obsessive thoughts and it is horrible. Yesterday morning she felt great. She got up early and said her head was so clear. She was happy and herself. By noon she wanted someone to kill her. We have been off antibiotics since mid January and things have been getting worse. We just feel we can't keep putting antibiotics in her. This is an autoimmune disease and I believe it starts in the gut. We are using the book " The Microbiome Solution" to heal our leaky gut. We are also about to embark on a serious essential oil program. It will be 2 years in April that this happened to us and it was just in September that we found out that is was PANS. We too are struggling in school. I am not sure she will be able to finish this year. She can't focus and doing homework, well let's just say it rarely happens lately.
  2. Like
    MyLighthouse got a reaction from Johnsmom in Anyone in LaCrosse, Wi or Winona, MN area?   
    I was wondering if there are others in this area that might want to meet once in a while and maybe in the future start a PANDAS/PANS Group?
     
  3. Like
    MyLighthouse got a reaction from kakrpa in Best ABX for Mycoplasma?   
    We are dealing with high mycoplasma for 2 of our children. We have been on clarithromycin for a couple months, azithromycin for a month and doxycycline for one round. We take curcumin for inflammation, an initial steroid burst, and supplements for immune support. We are currently on fluconazole for yeast. We are better but not 100%. We still do have mycoplasma though. We are thinking about trying Dr. Horowitz's protocol of multiple antibiotics for bacteria without a cell wall. You can google him (he is a lyme doctor) and he has several presentations on youtube. One is "Why am I not getting better?" and "Herbs, Hormones and Heavy Metals." There are a couple different presentations on "Why am I not Getting Better" topic. The presentation on Herbs, Hormones and Heavy Metals is fabulous also. Something to consider looking into.
  4. Like
    MyLighthouse got a reaction from dasu in MYCOPLASMA - how have you treated   
    Thank you for the posts! Yes, we are seeing a PANDAS/PANS doctor and we are on week 3 of Biaxin. We did a 5 day steroid burst at the beginning. They take Fruit Anthocyanins and we just started enhansa curcumin. We started to see some results on day 6. By day 10 our primarily OCD daughter started to takes a shower, put pj's on and brush her teeth before bed, and she had desire to live! But this last week, her evenings are harder. Her days are up and down. She will say, "I think these meds are working, I can take in my surroundings", etc. Then a little later, she will fall apart and be upset. After reading your post, it makes me think the steroids gave the little extra that we need? With her twin, she is different. She is starting meds as a girl that is withdrawn and can sleep a lot. This girl that loved to be by other kids does not interact as much. Without going into her history, she did not tell us things that have been going on in her head. She has been obsessing over things, hearing some voices and seeings movements that scare her. She has cried 2x in the last week (which I was thrilled to see some emotion!) and said that instead of hearing voices 10x a day, it is only 2 or 3 and she does not see movements as much. We never knew this was going on. Two years ago right now, she was a wreck with anger, anxiety, some OCD, to the point where she could not go into the dance studio, into a clinic or go to school many days. We ended with a girl that is better on the outside, but still not well on the inside. My plan is to see a naturopathic doctor that specializes in PANS/PANDAS/Lyme, immune, and digestive issues in the next week or so. As for IVIG's, our primarily OCD daughter does not qualify because she has such low IGA's.
     
    How are your children doing now? How is the OCD? What do you think helped the most? Can you tell me what a steroid infusion is? It would be nice to talk sometime.
    Thanks for the replies.
  5. Like
    MyLighthouse got a reaction from Bella in MYCOPLASMA - how have you treated   
    Thank you for the posts! Yes, we are seeing a PANDAS/PANS doctor and we are on week 3 of Biaxin. We did a 5 day steroid burst at the beginning. They take Fruit Anthocyanins and we just started enhansa curcumin. We started to see some results on day 6. By day 10 our primarily OCD daughter started to takes a shower, put pj's on and brush her teeth before bed, and she had desire to live! But this last week, her evenings are harder. Her days are up and down. She will say, "I think these meds are working, I can take in my surroundings", etc. Then a little later, she will fall apart and be upset. After reading your post, it makes me think the steroids gave the little extra that we need? With her twin, she is different. She is starting meds as a girl that is withdrawn and can sleep a lot. This girl that loved to be by other kids does not interact as much. Without going into her history, she did not tell us things that have been going on in her head. She has been obsessing over things, hearing some voices and seeings movements that scare her. She has cried 2x in the last week (which I was thrilled to see some emotion!) and said that instead of hearing voices 10x a day, it is only 2 or 3 and she does not see movements as much. We never knew this was going on. Two years ago right now, she was a wreck with anger, anxiety, some OCD, to the point where she could not go into the dance studio, into a clinic or go to school many days. We ended with a girl that is better on the outside, but still not well on the inside. My plan is to see a naturopathic doctor that specializes in PANS/PANDAS/Lyme, immune, and digestive issues in the next week or so. As for IVIG's, our primarily OCD daughter does not qualify because she has such low IGA's.
     
    How are your children doing now? How is the OCD? What do you think helped the most? Can you tell me what a steroid infusion is? It would be nice to talk sometime.
    Thanks for the replies.
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