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  1. Hi HelenJenn, it's not surprised that you son's tics gone after this diet...after studying it on web further and watching the videos below has helped to understand this diet thing is much more profound than it seems...one lady asked how about how to regulate immune system, the answer seems lay in the guts. thanks for sharing your story, it makes me wanting to start this diet. Have been on GFCF diet, not enough. DD8 also has tics. Would love to communicate with you regarding this. Can you PM me or is it ok I pm you? It's quite intimidating to start with the intro diet as you did it. It's better to start with the full diet with us, since my DD is constipated..the hard part is how do you pack for lunch with this diet.. The following are the videos I watched...have you seen them before? loads of info totally worth watching. Dr Campbell speach at Price conference: (1hr 30min) Youtube: Dr. Joseph Mercola interviews Dr. Natasha Campbell-McBride (2 hrs)
  2. colleenrn Can you tell me where you get babesia test done? My ILADS tested DD8 for babesia through Igenex, nagetive. Now DD8 has been under treatment since August...thanks for you post to remind me I need to do another babesia test..according to ILADS, regular labs (covered by insurance) does not test babesia...I have an appointment with this Dr this afternoon at 4:15..will ask her again. We are following Zhang's protocol for babesia..she herxed on the fifth day..I really should have her tested again. Thanks so much! Hang in there. Zhang's website : www.zhangsclinicnyc.com
  3. We drove 20 hrs to a BBC near us, ready to start the program. after the evaluation (test), total 3 hrs. we are told that my DD8 is a borderline case, basicly BBC program will help, but doing the program at home should be sufficient. Similar to yours, DD has tic, anxiaty issues which is mild. She is functioning well in and out of school...their test confirmed DD is accademicly gifted. right after the test, we have our lyme test back, indicating infection. So we did not do the program and came home started lyme treatment. So here is what I am thinking: 1. Definately go through the test from them, that will help you decide if you want or fit for their program. our experience is that the test give you so much information it's is worth it regardless, just think I drove total 40 hrs for it and glad. 2. Did you rule out lyme? and other infections? The Dr there told me infection needs to be dealt with first. I am glad this Dr has the integrity to not just grap my money, $6000 is not a small amount for 3 month program. 3. I have heard good stories about doing the program at home..with the book 'disconnected kids'. I got both of his books...just started small..it's quite daunting of a task to do everything in the book...I am still struggling with lyme treatment at the moment. Please keep us updated....best luck to you.
  4. Hi Priscilla, Thanks for sharing your amazing story..I went to read your old posts, somehow I can only see the first page, not the rest..(any tricks here?) When you say you had "PANDAS/Lyme" diagnosis, Do you mean your DD actually had it or is it a false positive due to vaccine? Did you treat lyme specificly? My DD8 has quite a few positive lyme bands, ILAD wants treatment, but I am still not sure if lyme is true for us. So I opt for a more natural treatment (Zhangs protocol). Thanks again for giving us hope and courage!
  5. Could you PM me too. Thanks so much for sharing...This is the first time I heard about it...need to do more research, will also ask my ILAD.
  6. Thank you so much LLM for your information and experience with this. That's the next piece I need to figure out with my DD8. I am going to ask my ILADS about this and looking for a DAN in my area. Thanks again for your detailed explanation.
  7. Hi LLM, Can you tell me how to check methylation status, including transsulfuration pathway? Thanks!
  8. Thank you all for your replies and your informative discussions! I am trying to learn everything I can to help, So far we have visited more than a dozen of Drs, wasted/aganized over more than a year of time, not one remotely suggested to test for lyme. When I asked about it, the answer would be 'not possible'. Finally I found an ILADS got her tested...I am sick of these Drs..and am still upset that I did not found out about it sooner..It's been over a year since her onset (fever/vomit/pain), wasted early treatment oppotunity. I will never trust any one Dr again. The point is, To protect your family, YOU have to be the family primary care Dr, YOU have to be the Nutritionist, You have to be the chef...etc. It's exhusting to just get clean food on the table.. Finally DD is doing better last 2 days (Monday and Tuesday) with her tics, after herx (worse tics) for ab out 2 weeks. Hoping that we are over the hump with the herx. She does feel tired in the morning when wake up, a extra 10-15 min to get up. I was thrilled to see her actually pooped twice yesterday, which is rare..what i did differently was I bought organic whole chia seeds on Sunday (recommanded by Dr trained by klinghardt), socked about 2 tbsp in a glass of coconut milk (or water), then mixed it with berries made smooth, divided by two. had her drinking in morning and afternoon. Plus I added liver life (believe from biopure) into the mix...So I am sticking with the formula. It would be great if I can keep her bowel moving using these. I am interested to know what kind of diet is good for us...I am looking for a good lunchbox (thinking about Planetbox, expensive), and try to get more variaty into her diet. Any suggeations? As for the clay, we are using it for bath. DD loves it. She said makes her feel better. especially after an airplane ride. I measured Magnetic field in the Plane last time I was flying. With the plane not even taking off, the meter maxed out on reading already, same in air. So i know it's really bad up there. The reason I even took a measure was because DD offten has fever right after flight, so I suspected EMF a culprit..then I started to bring clay on board, load mud on her feet then put sockes on. Uncomfortble, but she never had fever since that practice. Clay neutralize EMF and radiation I suppose. Another reason we use clay bath often is that our house (rented) has dirty electricity and copper water pipe. I moved out beds to best location but still read between 2-3. and other place high between 6-15. I know I need to move, but i am so exghusted and has been putting it off. Is it true that you can't heal lyme unless this EMF thing is resolved? the landlord is not going to do anything about it, that I know. Is there anything else I can do to ease this meanwhile? By the way, I myself is taking Zhangs, for a treatment test (that is, if I have herx, then most likely i have it), my lab test shows band 39 IgM present, and Ca4 high, Ferretin low. my ILAD not sure if I have it or not. She did gave me Iron supplements, I took it for a day and it made me dizzy so I stopped..don't know what else to do about iron, Molases? I noticed a few thing with Zhangs on me. About 2 wk into it, I did feel sick with flu-like syptoms, sore eyes, fatigue, neck/shoulder pain. lasted about 3-4 days. but who knows what it is, herx or not? I am on it for about a month now. What I did notice was that the brownish rusty shadow on my face started to lift, my face is a bit patchy but brighter. So I am very happy about that. these shadow started when I first had my hyperthyroid in 2008, and it won't go away ever since. The other thing was I have a red painful, burning bump coming out on my upperback near spine, size of a qurter. that spot have been painful for about 2 yrs now on and off (deep inside). It seems now that it came out to the surface, it does not hurt inside...I have to wait a little longer to see. What happened there? anyone has this kind of experience? Wish you all well...
  9. I'd like to share my experience with Dr Zhang's protocol, and to see if anyone else has used it and what's the outcome. My DS8 has been on Dr Zhang's protoc0l for a month. It's chinese herbs extract in capsules. On the fifth day of treatment, DS started to have fever of 102 for 2 days, then I lower the dose to 1/2, and she continued to have fever for another 2 days, with headache, fatigue, muscle pain etc. I put her on full dose again once her fever was gone ( total 4 days, later I learned from LLMD that I should have not used tylenol unless it's 104, she said it's good to let it out, tylenol push bad stuff back in body), 10 days after that, her tics has been coming back with vingence, new tics and more sevier, and very hyper...it's been 10 days with tics so bad, and I don't know when her tics will stop. Called Dr Zhang, he said it's the herx, usually 1-2 wks of reaction. Part of me is glad that she is having herx, but I am also concerned that some kind of toxin is hurting her CNS, might cause damage. I mainly tried to keep her bowel movement smooth by giving her prune juice and emergen-c 1000-2000/day (it works), and take epsom/baking soda bath or clay bath every other day, to help her herxs. Any other suggestions that can help her? She did not complain any discomfort though during the whole tic episode, I don't know if she is aware of it. and she seems to have lots of energy going school and play outdoors. Dr Zhang's clinic is located in NYC, we never met him, only consult on phone. Dr Andrew Weils said this Drs protocol is the best method he knows for treating lyme. His website: http://zhangclinicnyc.com/, I ordered his book 'lyme disease and moder chinese medicine' at amazon.com, which is great for me to understand his method. Ever since I learned my DS might have lyme/co-infection, I bought 10 books at amazon and studied day and night on the web to try to find the best way to proceed. The reason I chose this are as follows, and I hope I am right and my DS gets well; (1). LLMD wants to put her on 3 antibiotics for 2 years, yet not 100% sure if she has lyme/co-infection, since with blood test you can never be 100% sure, Igenex did show many positive bands, plus antibody to Erhlichiosis(both kinds), mycoplasma, HHV6, not Babesia nor Bart. I read that Erhlichiosis is known to cause false positive on lyme bands. So basicly we don't know what exactly we have, or if the infection is current. She has to try different antibiotics to figure out what works. But, Zhangs herbs have wide anti-micobial spectrum. that means you don't have to what you bacteria you have, it covers. He use specific herb for Babesia since it's parasites. (Energetic testing through 2 Drs only find erhlichiosis) (2). Not only just kill the germs, like antibiotics, more importantly, make your immune normal again to clear the residual lyme/co-infec. he said lyme/co-infec can be eradicated, not just germ load reduction. He has gotten many well after they failed antibiotic or keep relapsing after stopping antibiotics. So to me, if he can get people failed antibiotics well, then why do I even go antibiotics in the first place. (3). Side effects. His is with little to none toxicity, expesially for children, his youngest patient was 1 yr old. So that's my thoughts. Am I too risky to rely on one protocol? When DS going through all these tics..I sometimes have a little doubt about am I doing the right thing? But then I don't know what's my alternatives. I have been reading in this forum for a while, and I feel for everyone with a child sick. and it seems antibiotics is a hard way to go through..I urge you Moms out there when your child is not doing well with antibiotics, pleae google 'Zhang's clinic' to find out more about this. I have a question on blood testing. Now that we are on treatment for a month, and have herx, when would be a good time to do another blood test again? to see if the test come out positive for Babesia or Bart. I have spent too much money with testing already ( Igenex, and Advance culture test), want to stick with what insure will cover. Does LabCorp test Babesia? or any other mainstream lab you can suggest? How can I tell it's time to stop treatment by looking at blood/lab test? etc. P.S. you can ask for a 15 free consultation with Dr Zhang. He is very nice. If you want you can pay $150 for formal consultation and become his patient, and he is very accesable via phone afterward for free, although he does not have lots of time for you but he is there for you. I was freaking out with DS herx, and called him 3 times in last month, and he is right there to talked to me 5-10min each time which is nice to ease my mind. Any advise is greatly appreciated.
  10. Just joined this forum, wish I joined earlier and I would be aware enough to have tested my daughter earlier...Just got her blood test results from LAB CORP: Borrelia: IgG P58 present IgM P23 Present Bartonella: negative Babesia: no testing Ehrlichiosis: IgM positive Mycoplasma: IgG, IgM both positive HHV6 antibody positive This ILADs lyme Dr told me there is no need to do further testing, should start treatment based on test and symptoms, which is on 3 antibiotics for 2 yrs duration, and there is no garantee of a cure (relapse not unconman)..I am just devastated to hear that. and I am researching about lyme day and night to try to understand this thing. So, how should I proceed from here? I did order Igenix test complete panel for Lyme WT blot and IgG/IgM for all three co-infections, plus an advanced culture test, I have to wait about 3 wks for all results to come in...I did not order PCR nor the FISH test. Can you tell me using what method and which lab you are able to test Bartonella positive? How about Babesia? Is this Dr even right to start treatment like that based on results we have? I do see on test result, there is a note from Lab stating that caution should be made that if IgG negative, IgM positive on a band, false positive is HIGHLY likely!? DD is doing much better now, still have tics, all pain and numbness went away (took a yr). Any advise and insight regarding testing and treatment would be greatly appreciated! History: DD8 had 2 episodes of fever/vomiting last year March and April,2011. She had pain all over started from lower leg pain during fever. Headache, eye pain, blurry vision, cheek pain under temple area. Jaw pain, grinding so frequently and loud wakes me up at night. Kicking like crazy at night. Insomnia. hard to fall in sleep. Sudden chest pain(heart), fall to the ground. Stomach pain everyday, arms and legs pain. Bleeding gums, blisters in mouth and on lips. Lymph swollen and pain under chin. Numbness and tingling on hands and feet. Stabbing pain mostly on legs and feet, but also on other body parts. Hair falling. Eye brow thinning. Out of balance, fall and bump into things. Easily get upset, started poking other girls. She kept tell me her brain does not work anymore several days later when she is well enought to go to school.. I noticed her reading and writing deteriorate. She could not read smoothly anymore, jumping between lines, stuter on words, can't read one sentence at once. Writing become angular and very small. Sad and clingy. Anxiaty and fear. Headach and motion sickness in Car, which never had before. Starting May 16, 2011. Noticed jerky motion IN SLEEP in her feet, then spread to her legs, truck, arms and hands, sometime her mouth and neck. In July she started to jerk during the day, her fingers had rolling motion and mouth moving, the tics keep changing forms..after 1 yr seeing numerous Drs, diagnose points to Tourettes. and was told it's no big deal and there is no cure.
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