cfrei Posted September 23, 2010 Report Posted September 23, 2010 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
JTs-Mom Posted September 23, 2010 Report Posted September 23, 2010 Wow! That is truly overwhelming. We just took my son to see this same doc and our regimen is much less intense. My son is very functional though, so I don't think she felt he was that bad off. He is 6 and his primary symptom is motor tics. Most of his motor tics are in his toes right now (flexing, flaring, curling) so there wasn't a real visible issue with him other than one lip tic (even though we told her about the toe tics). She is actually taking him OFF one of the antibiotics that he's been on for several months. I really wasn't too thrilled with that, but can no longer get the abx anymore because the other Lyme doc we had been getting it from is retiring at the end of this month. I'm not familiar with your daughter's symptoms, but I'm surprised she is going right to IV without trying orals first (or has your ds already been on orals?). Personally though, I would like to try IV for my son. While IV is a bit scary due to the risk of sepsis and a huge hassle, I tend to think it's the best option for late-stage Lyme. I really question whether these oral antibiotics are penetrating the CNS sufficiently to do much good, especially in my son's case where the primary region affected is likely the basal ganglia. From what I've read, this is a very deep region of the brain. There's a reason that even the IDSA guidelines say that IV is recommended for late-stage infections. (I'm not totally discounting orals though, as I have certainly heard that some people have gotten well on them.) Good luck with the treatment and please do let me know how it goes!
cfrei Posted September 23, 2010 Author Report Posted September 23, 2010 Wow! That is truly overwhelming. We just took my son to see this same doc and our regimen is much less intense. My son is very functional though, so I don't think she felt he was that bad off. He is 6 and his primary symptom is motor tics. Most of his motor tics are in his toes right now (flexing, flaring, curling) so there wasn't a real visible issue with him other than one lip tic (even though we told her about the toe tics). She is actually taking him OFF one of the antibiotics that he's been on for several months. I really wasn't too thrilled with that, but can no longer get the abx anymore because the other Lyme doc we had been getting it from is retiring at the end of this month. I'm not familiar with your daughter's symptoms, but I'm surprised she is going right to IV without trying orals first (or has your ds already been on orals?). Personally though, I would like to try IV for my son. While IV is a bit scary due to the risk of sepsis and a huge hassle, I tend to think it's the best option for late-stage Lyme. I really question whether these oral antibiotics are penetrating the CNS sufficiently to do much good, especially in my son's case where the primary region affected is likely the basal ganglia. From what I've read, this is a very deep region of the brain. There's a reason that even the IDSA guidelines say that IV is recommended for late-stage infections. (I'm not totally discounting orals though, as I have certainly heard that some people have gotten well on them.) Good luck with the treatment and please do let me know how it goes!
cfrei Posted September 23, 2010 Author Report Posted September 23, 2010 thanks for your reply - my daughter has been on orals for 6-8 months now with little result. She also has PANDAS so we definitely have a basal ganglia issue going on. She did take her off all of her other antibiotics as well which really scared me too. She was on zithro which was protecting her from the strep which she is no longer on. I'll let you know how it goes. Its all really scary....crossing my fingers and toes... Wow! That is truly overwhelming. We just took my son to see this same doc and our regimen is much less intense. My son is very functional though, so I don't think she felt he was that bad off. He is 6 and his primary symptom is motor tics. Most of his motor tics are in his toes right now (flexing, flaring, curling) so there wasn't a real visible issue with him other than one lip tic (even though we told her about the toe tics). She is actually taking him OFF one of the antibiotics that he's been on for several months. I really wasn't too thrilled with that, but can no longer get the abx anymore because the other Lyme doc we had been getting it from is retiring at the end of this month. I'm not familiar with your daughter's symptoms, but I'm surprised she is going right to IV without trying orals first (or has your ds already been on orals?). Personally though, I would like to try IV for my son. While IV is a bit scary due to the risk of sepsis and a huge hassle, I tend to think it's the best option for late-stage Lyme. I really question whether these oral antibiotics are penetrating the CNS sufficiently to do much good, especially in my son's case where the primary region affected is likely the basal ganglia. From what I've read, this is a very deep region of the brain. There's a reason that even the IDSA guidelines say that IV is recommended for late-stage infections. (I'm not totally discounting orals though, as I have certainly heard that some people have gotten well on them.) Good luck with the treatment and please do let me know how it goes!
P_Mom Posted September 23, 2010 Report Posted September 23, 2010 Although I can't speak of how a child handles IV antibiotics....I was put on IV Rocephin for 28 days.
lyme_mom Posted September 26, 2010 Report Posted September 26, 2010 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 My son had a picc line for for rocephin for five weeks. It accidentally fell out while he was sleeping or else he would have had it two months. I was glad he had it b/c he had Bells Palsy indicating CNS involvement and the iv rocephin crosses the blood brain barrier. It was quite stressful though. You need to be very careful with the line. No sports, swimming or yanking the arm. Even the cleaning of the bandage by the nurse can be stressful. Using the gloves to remove the large square of tape over the entry point without moving the cord is very tricky. Once the glove stuck to the line and we had to go get an xray to see if it was still in the right place. We didn't do all those other things during the iv treatment b/c he did not have babesia symptoms at that time. Your doctor must think Babesia is a problem for your child b/c bactrim, artemesia and mepron all kill babesia. Apparently they can also kill lyme too and I think bactrim is somewhat effective against Bartonella. We did add rifampin after a month b/c of bartonella symptoms and he immediately benefited from this. He always took four probiotics a day and that worked well for us (Integrative Therapeutics pearls). I don't know what all those things are on your list so hopefully you have the probiotics covered. I see one capsule at bedtime. What is the potency of the capsule? THe pearls we use have about 2 billion in them per pill. Once capsule would be nice though. The good thing about the ones we use is that I could give it to him with the antibiotics so whenever you can get them in them is ok. That has been nice. He did some of the detox stuff later b/c he had a filling removed by a regular dentist (I didn't know not to do this) and the muscle testing revealed mercury toxicity. I'd like to do more but he hates taking pills or the homeopathic drops. I don't think I could have gotten him to take all of that but if you can get your child to take all of this you need an award! That's a lot of work! I am sure it will help to do all of that but you have your hands full.
philamom Posted October 2, 2010 Report Posted October 2, 2010 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 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!
cfrei Posted October 4, 2010 Author Report Posted October 4, 2010 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 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 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!
philamom Posted October 5, 2010 Report Posted October 5, 2010 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 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 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! Thank you Cindy! That is a very aggressive regimen. How is your daughter doing? Did she begin the IV?
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