

cfrei
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Everything posted by cfrei
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Hi philamom, The Burbur, Parsley and Endopath are indeed used for detox and we do try to give them to her on an empty stomach but honestly at this point, we just are just happy to get them into her when we can at this point. I was told that its more important that the Abart be given on an empty stomach than the Burber etc. I don't think it matters whether its given with abx or probiotics, at least the doctor didn't indicate otherwise. Hope this helps. Cindy Is the Burbur, Parsley and Endopath being used for detox? Did she request you give them on an empty stomach? Can they be given at the same time as abx or probiotics? Thanks!
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Hi All, My daughter is being prescribed IV Rocephin for 4 weeks along with Glutothyion for 6 weeks via a midline. Has anyone else gone through this with their child who can share their experience? My daughter is 9 years old. In addition, she has been put on a very aggressive and overwhelming detox program with the following supplements and homeopathics. I trust my doctor as she is one of the best pediatric lyme docs in the country, but am curious if anyone else has gone through this type of regimen before and how their child handled it. Thanks, Worried Mom Upon Wakening ABART 10 drops in water – hold in mouth before swallowing Glutothyion cream (until we start IV ) 20 MINUTES LATER Burber 10 drops in water Parsley 10 drops in water Endopath 15 drops in water Breakfast Tri Zinc 1 capsule Bactrum 1 capsule Mepron ½ teasponn (w fatty food) Artemisinin 1 capsule (2 days – then off for 10 days –repeat 3 times) Merivasr 1 capsule DHA 1 capsule Intestazyme 1 capsule Mundipir ¼ teaspoon in warm tea Biochelal 3 drops 1x a day for ten days, then 3 drops 2x a day for 10 days, then 3 drops 3x a day for 10 days) in warm tea with Munipir Neprorella 3 capsules (end of meal) Sy circue tablets dissolve one under tongue After School Artemisinin 1 capsule (2 days – then off for 10 days –repeat 3 times) Mundipir ¼ teaspoon in warm tea Biochelal 3 drops 1x a day for ten days, then 3 drops 2x a day for 10 days, then 3 drops 3x a day for 10 days) in warm tea with Munipir Intestazyme 1 capsule Sy circue tablets dissolve one under tongue Before Dinner Burber 10 drops in water Parsley 10 drops in water Endopath 15 drops in water Dinner Bactrum 1 capsule Mepron ½ teasponn (w fatty food) Famvir 1 capsule with food for ten days Artemisinin 1 capsule (2 days – then off for 10 days –repeat 3 times) Merivasr 1 capsule DHA 1 capsule Intestazyme 1 capsule DHA 1 capsule Munipir ¼ teaspoon in warm tea Biochelal 3 drops 1x a day for ten days, then 3 drops 2x a day for 10 days, then 3 drops 3x a day for 10 days) in warm tea with Munipir Neprorella 3 capsules (end of meal) Sy circue tablets dissolve one under tongue Bedtime Bacoflor Probiotic, 1 capsule Notatum 1 capsule (M-F for 4 weeks) then M, W & F for 4 weeks Quentans 1 capsule, same as above
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Has anyone had any experience with Xylitol and its ability to help prevent strep? Thanks, Cindy
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yes, she has been treated for the last 6 months, but after waiting 4 months, we are finally seeing Dr. Ann Corson on September 15th. I understand she is supposed to be one of the best for treating pediatric lyme disease.
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Thanks for your reply - I'm curious - what is a taper? We are one week into a Clonodine patch and I have to say it seems to be working so I am feeling very hopeful there. It makes her a bit sleepy but that seems to be helping with her anxiety at night (she is falling asleep faster) How many IVIG's did you end up doing? My daughter also has Lyme so there are complicating factors in our case....ugh!
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I have heard the same... Have you thought about a taper?? ps..i am very curious how you progress as ds has tics... we had one day last week of something being on his desk and getting in a little trouble at school...but its the tics for us!!!
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My daughter has PANDAS and Lyme and I am fully convinced that its treating BOTH that has gotten us to where we are today, she is still suffering with the tics - but all of the rage and anger is gone. My daughter is fully back. PLEASE go and get her tested for Lyme. The IVIG will not effect the Lyme test. If she has Lyme and co-infections (like my daughter) then she will not get better without long term treatment of antibiotics. And IF she does have Lyme, make sure that you go to an ILAD Lyme doctor. Also, there are only a couple of Lyme blood banks (Igenex and Stoneybrook are two of them). If you want to talk further about this offline, please email me at exec5565@yahoo.com and I am happy to give you my phone number. I remember when my daughter threatened to kill me and how scary that time was. I promise with the right treatment, she will get better. Hang in there. Cindy
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Hi, My daughter had IVIG in April and thankfully it got rid of all of horrible rage, anger and volatility that had been plaguing her and our family for the past year or so, but in the process it seemed to have made her tics worse than ever. I have been speaking with another mom whose child suffers from tics as well (who also had IVIG around the same time) and she said her daughter is going through the same thing. In addition to the tics being worse than before IVIG started, she has now acquired some OCD like behavior which she never exhibited before. Is there anyone else experiencing anything like this? I have been told by my neurologist to wait, that the tics can be the last to go.....not sure how I feel about that. Thanks, Cindy
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Hi, My daughter is on multiple antibiotics treating lyme and PANDAS and we have been struggling with her motor tics for some time now. We recently did IVIG which helped ALOT with the behavioral issues but we still couldn't kick all of the tics. In fact, they seem to be getting worse and I haven't been able to figure out why, until I read your post. I have a feeling that my daughter does indeed have a yeast overgrowth which is causing or at least intensifying her tics. I don't believe that I can take her off of her antibiotics because of the lyme and the PANDAS but do you know if I can still treat her with Nystatin etc. while still on the antibiotics? Thanks, Cindy
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My daughter's first tic was an eye tic at three years old, so its possible it is a tic. At the same time, like someone else said, most kids get a tic and most of the time, they just outgrow them and they go away. If your son has PANDAS however, it could mean that his immune system has been triggered in some way - either by strep or some infection. If you aren't keeping a journal, I highly recommend doing so. I find it very helpful to try to keep track of all of this. I've been keeping one for years for my daughter, not only her symptoms, but now what medications she is taking, when she gets sick, when she "relapses" etc. Hope this helps...
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yes, my daughter has lyme and pandas and it has been particularly difficult because the symptoms for both diseases are the same. She has really bad Tics, anxiety and emotional/behavioral issues. She recently did IVIG and we saw a significant improvement in everything for a couple of days (and she slipped back again recently) so we plan to do another IVIG in August.