abbe

Cheri, Caryn and everyone else, I know I have talked about Mycoplasma and Nicholas this past year. His Dr. muscle tested him for it and found that he had it. We have NEVER used antibiotics to treat this infection. I gravitated to this sight originally because I am a big believer in healing the body without medicine if at all possible. Even when I mad the choice to use 15 mg of topamax for Nicholas I did so only to alleviate his anxiety from his tics, the tics themselves and "buy" myself time to figure out the real issue. I don't know if mycoplasma is the real and only issue behind Nicks tics. I can say we have gotten 100% positive result treating Nick for mycoplasma with homeopathic vials and through a machine called the kmt machine. Dr. Chung is completely against treating it with antibiotics and he is a medical doctor who practices integrative medicine. His reasoning is the infection goes IN the cells and antibiotics will only kill the infection outside of the cells. Also he said that we are ALWAYS exposed to mycoplasma everyday and unless the body builds up the immune system to fight against the virus the problem will just persist. That doesn't even take into account the yeast issue with antibiotics. So although I wanted to stick nick on antibiotics and just get rid of it I knew better. Nick has been tic free again. 100% . Ten days ago he started to tic and I took him in and he tested for some aluminum on the left side of his brain. I have been using cilantro on his head every night and he used the kmt machine at the office. Within 3 days he was 100% tic free again. I think Nick's brain is prone to infection and metals from his blood brain barrier being weakened due to his past medical history. I can only hope in time it and he heals up completely. abbe

Hi all, Seems like today I will have plenty of time to post I woke up to 18 inches of snow !!!!!!!!!!!!!!!!! To respond to the replies. I spoke with Dr. T. on the phone and I looked at the Pandas board. It was really that idea of pandas that propelled my thoughts to research into mycoplasma myself which I did just by googling mycoplasma and tics. It seems there hasn't been nearly as many cases reported as compared to strep. Dr.Chung always felt strongly that mycoplasma affects the brain neurologically. I haven't taken Nick to Dr. T. because at this point even though he recognizes tics/pandas etc. his protocal I think will still be run blood work for everything and give Nick antibiotics. I may have to do that but from what I picked up from dr.chung unless we can teach Nick's body to fight off the virus on it's on that will be an endless cycle of putting him on antibiotics. All of my thoughts are still coming together but I don't want to take Nick to another doctor right now he loves dr chung and resents me dragging hi everywhere. We are doing outside testing right now for school since they were down my throat about add which he doesnt have I think he has a form of dyslexia that makes reading and writing a little difficult for him. I will post after I do the tests. After he went on the vials and cleared the infection his school work, mood everything was awesome. It was like night and day. Faith Nick had cold when he was younger that settled in his chest so maybe that is how he originally got it. I don't know. Dr Chung said it is everywhere all the time though it's just that a healthy immune system fights it off. In Nick's case I believe that his brain injury weakened the blood brain barrier to a degree allowing the infection to enter in more easily. Hopefully that means herbs can get in easier also !!!!!!!!!!!! Olive leaf is a great idea cheri and I have it in the house. I get liquids herbs from Pure Herbs they are great. thanks and keep me posted as to your thoughts on trying to beat this without the antibiotics.. hugs oxoxoxoxox abbe

Hello, Haven't posted in awhile been busy with Nick and my other two sons. I wanted to give you an update on Nick though. So without repeating his history to the new comers this is really for those who have been following my posts over the past 18 months. At Nicholas last visit Dr. Chung detected Mycoplasma infection in him. Second time he did. Once again he gave me the 10 homeopathic vials for him to take over a 30 day period. Prior to this visit's Nicks tics were gone again except after that laser light experience in Disney. But before this visit for no reason I could see his neck and eyes started up. After 3 vials of mycoplasma homeopathic medicine his tics went away again. 100% So I really started to think that this Mycoplasma could be the ultimate culprit for Nick. Yes the supplements and allergy avoidance helps (alot) but maybe just because they enable his immune system to function at a better level which keeps the infection from coming back or helps the body fight it off. So yesterday I presented dr. chung with my questions on why or why not would he want to treat Nick in the "manner" that many of the pandas moms/dads are doing ie: blood work, antibiotics iveg. He said that the homeopathic vials are teaching his body to fight off the virus on it's own (he muscle tested that it was gone) he said that the blood work isn't necessary for him to know if Nick has it or not he can tell through the muscle testing alone. He wasn't opposed to me getting it if I wanted it but of course Nick doesn't. He said the titers counts aren't accurate anyway because you body could have the infection 3 weeks prior and then the counts go up or down. He said treating mycoplasma with antibiotics wont work because it is an intercellular infection (goes in you cells) and antibiotics will just kill the infection out of the cells and do nothing to teach the body how to ward off the infection which is all around us everyday. also it won't work in the cells. I could go on and on really but have to go to work and I will post more this weekend (we are getting a BIG snowstorm here in Jersey !!!) wishing you all the best with yourselves and your loved ones abbe

Thanks and I hear ya loud and clear on that. abbe

Faith, Nicholas tested positive for Mycoplasma by Dr.Chung but he only did that through muscle testing. The thing is every time Dr.Chung has said he was positive for it his tics were back. Then he gives me these holistic vials and all ticcing goes away. Soooooo I don't know if I want to put him through all of that blood work. He used to get blood work when he was as chop and HATED it. So I am waiting to talk to dr.Chung this week. I did talk to dr. T. last week. He seemed very nice. He wanted to put him through the blood work though. abbe

Hello, Just wondering how many vials of blood were taken from your children and what tests did you run for?? I am thinking of getting blood drawn to test for mycoplasma infection> I just don't want to test for everything under the sun and subject my son to to much blood being drawn. thanks abbe

BUMP

doctor, My son has the mycoplasma infection and has had tics for 18 months. I have tried every route to get him better and just today BEFORE reading your posts it HIT me. All this talk about pandas and strep and I knew my son didnt have strep but now I think this infection is causing it. I live in NJ and my son see's Dr. Chung from the Chung Institute. He practiced out of Cooper and is on his own. I tried to call you today and will try again. I need to talk to you and I am hoping between you and Dr. Chung you can discuss the antibiotics that would best help him. Thank you so much abbe

[q Faith, Nicholas is 8 and is on 15mg of topamax. That dose is very low and I kept him that low for a reason. If something is bothering him or a trigger I can still see him tic. After seeing dr. chung and continuing to unfold Nicks puzzle of what is causing this he can put Nick in "remission" and he doesn't tic. He has non ticcing periods meaning 0 tics during this period. They are more and more frequent and lasting longer and longer. I can only hope he will get better and better and then I will drop him off the topamax. Before Nick was on topamax the tics were much more intense and he was getting very bothered and I was a MESS . I cried and cried before I put him on so upset that I couldn't fix him without it. I know I made the right decesion at the time now hope this helps abbe

Faith, Yes all fruit juices are made with old , moldy fruit. Think about it if you were making orange juice would you waste the old fruit or just use it and make the juice. I NEVER let Nick drink orange juice anymore. In any event I give him fruit all fruit actually but no oranges and never fruit that isn't fresh. I have had good results with the mold drops from dr. chung we talked about them awhile back. take care abbe

B. Nicholas is allergic to oranges and they cause him to tic. Not sure if it is the oranges or maybe mold abbe

Caryn, I posted back to you but by mistake it is listed under your previous message to me. sorry computers aren't my thing. thanks abbe

Abbe, At his worst he slept 7 hrs a day. It was horrendous. He would lie awake for up to two hours blinking in bed and I would sit with him in the dark and cry. He was a chronic bed wetter too, and that resolved after he was put on the anti-fungal diet for a while. Corn is a big trigger for him, hyperness, sleeplessness, bed wetting. He did have night wakings at that time but I don't know if that was so much his condition or my parenting. He was never a good sleeper and didn't sleep through the night until 6 mos old. My younger two were completely different and so was I, so am not sure if it was technique or his condition. The clean diet is less taxing on the liver and kidneys. I suppose that was the main thing. We did acupuncture for a short while but he was too young and didn't really take to it so we quit. He had light symptoms after we reintroduced more foods (sweets and stuff) and so I started NAC supps at a very low dose (like 1/4 a cap a day at 100 mg a cap, so about 25mg). The symptoms stopped completely. We kind of phased out the NAC and now he is in 'remission' again. So we will continue like this until we see symptoms and then we will start with NAC and possibly more restrictive diet again. I just don't see a reason to do it now when he is fine and happy and symptom free. I must watch to see if his symptoms are a seasonal thing. That is sometimes the case with these kids. We live near a corn field. Caryn Caryn, Thanks for your response. been going through a tough couple days with Nicholas but seems we are headed out of the water. He went to Dr. Chung yesterday who said he still has the mycoplasma infection and we are treating with Homeopathic vials. He also used the kmt machine on him. He did accupuncture in his ears with a laser beam. We muscle tested him for various supplements and allergies. He came up big time for Valerian so I gave it to him last night. He sleep like a baby!!!!!!!!!!!!!!!!!!!! He was like a different kid on the way home less irritable and so happy! He didnt show he was allergic to milk or beef anymore. I am still not giving him either. I ordered to the allergy test that you suggested on your sight that you prick the finger. (he should love that!) I think I want to look at the NC again. He muscle tested against using it so I have been using cysteine to raise his glutathione levels. My husband just got home who thinks Nick is fine so I better run. I will right again when I have more time. Glad you are back and thanks again for your push to test Nick for pyroulia. that was a huge breakthrough for us abbe

Abbe, At his worst he slept 7 hrs a day. It was horrendous. He would lie awake for up to two hours blinking in bed and I would sit with him in the dark and cry. He was a chronic bed wetter too, and that resolved after he was put on the anti-fungal diet for a while. Corn is a big trigger for him, hyperness, sleeplessness, bed wetting. He did have night wakings at that time but I don't know if that was so much his condition or my parenting. He was never a good sleeper and didn't sleep through the night until 6 mos old. My younger two were completely different and so was I, so am not sure if it was technique or his condition. The clean diet is less taxing on the liver and kidneys. I suppose that was the main thing. We did acupuncture for a short while but he was too young and didn't really take to it so we quit. He had light symptoms after we reintroduced more foods (sweets and stuff) and so I started NAC supps at a very low dose (like 1/4 a cap a day at 100 mg a cap, so about 25mg). The symptoms stopped completely. We kind of phased out the NAC and now he is in 'remission' again. So we will continue like this until we see symptoms and then we will start with NAC and possibly more restrictive diet again. I just don't see a reason to do it now when he is fine and happy and symptom free. I must watch to see if his symptoms are a seasonal thing. That is sometimes the case with these kids. We live near a corn field. Caryn

Caryn, What did you do to improve liver and sulfation sysems. Just food elimination? Also did your son have poor sleeping habits??? restless?? awaken at 3am in the night? just curious. thanks so much abbe

Nicholas rolls around on the floor also when he is all wound up. I think it is related .

faith, Nicholas teachers said he didnt focus well in class and they still say that. He is my third child and my first is gifted (17 years old top 10 student in his class, just admitted to governors school) my second is very ADD so bad so that he has an IEP ( I never did meds) he said he had a shoulder tic one summer and I never saw it. I think Nicks biggest problems besides tics are moodiness and irritability. He is either and angel or very mouthy. (Just at home he is quiet in school so he can control himself) He takes 15 mg of topamax still because he has breakthrough tics here and there as I am "healing" him. He is 8 almost 9. Just this past week the neck tic popped up slightly. We go to Dr.Chung on Tuesday so we will see if he knocks it out. He has had more video game time lately. I only let him go for 0 minues once per day on weekend. Dad let him have more and also let him eat 2 oranges. abbe

Hello all Nicky's brother is having a big party in May DJ and all. I am reluctant to let the dj bring any lighting due to the fact that Nick seems to have eye tics when around flashing and blinking lights. Any experience with this would be appreciated. thanks abbe

abbe hi abbe, glad to hear things are going so well. I havn't talked about pyroluria in a long time, but your post reminded me that I never did to that test. where did you do it with? could you direct me? and then how did you know what to supplement with, and what doses? what doses do you use? Only thing I really give my son is a multi, it has some in there, but not high. did you feel his tics were helped by that? what about any other type symtoms like irritability or attention/focus if there was any? thanks so much Faith Faith, I forget the lab I did the testing with but it was the best most reputable one. i got the name from Claire's old posts which I read all of them. Also Caryn mentioned to me when reading my posts that he could have it. I will look it up but Cheri might know also. There are certain supps for pyroulia so I brought them to Dr.Chung and he muscle tested Nick to see what he needed. and YES the anger and irritability have been the biggest changes besides the tics. I give him one half of a b6 supp in the morning (at night it gives him bad dreams) and 25mg zinc am and pm. He wasnt getting any zinc before so I feel this was the biggie for him. He also gets evening primrose at night. In addition I added b12 to the mix which isnt a pyroulia thing. It has a made a big big difference all around and I feel like I have control of the situation. abbe

[quote name='Caryn' date='Jan 12 2010, 09:48 AM' post='51616' Hello everyone, Really good to hear the good stories. The past year seems like a lifetime for me but Nicholas is doing wonderfully also. He basically is tic free without being super restrictive on diet or video games. He stays away from dairy, beef and oranges . If a flash bulb goes in his eyes or laser light he has his eye tic instantly. The biggest change in him has been the steady addition of b6,zinc and primrose. If pyroulia can cause tics then his having it could have to do with why he is doing so well. I really try and balance what he can have and do with keeping him happy and healthy. I have always eaten healthy in the house and I don't find it a burden. I wish everyone peace in your journey to figure out your triggers. all the best abbe

Faith, I am still here and check in not as often. I guess for two reasons, one Nicholas is doing very well and I have tried everything that I plan on trying for now and two I feel like when I obsess about his condition it consumes me, him and my relationship with my other boys who from the start thought I was crazy when I got to upset about his tics. I am so, so thankful for everyone here and will continue to post and try to help others with anything that seems significant, love/peace and happy new year abbe

ok all, Dr. chung feels it will resolve when his mycoplasma infection is gone. He picked it up in his head through glands???not sure to weird but we will see.