lismom

How long has she been on any of the antibiotics? My son had severe insomnia, up until 3 or 4 in the morning. It took 3 months on his new abx regimen to see any improvements. And thank goodness we have. He is now going to bed around 1 or so and just started part time afternoon school again. We have been targeting Bartonella and lyme.

Laure, I just wanted to say what we experienced with the sacc and probiotics. My son presents with mood liability and intense tics with high probiotics and sacc. I went off both and back down to smaller strain load and billion amount with another brand and added biotin. I saw this reaction more than once so I knew it was connected. Whether it was die off or the body didn't need the load, just wasn't good for him. Kathy

Bartonella can be passed from mother to child just like lyme. It is usually, but not always, a co-infection with lyme. If she has this, it suppresses the immune system making it easy for these kids to get additional illnesses and harder for them to get rid of until the bartonella and lyme have been taken care of.

Thanks, good to know.

I decided to start over and do things much more methodical. I love the wonderful things in chlorella and what it can do with toxins but I was seeing a reaction to my son I wasn't comfortable with. His ticcing and mood got worse. I watched for over a month and thought maybe its just cleansing. But then the more I thought about it the more I felt that his body was reacting to all the vitamins and other(unfortunately wonderful ingredients) elements that chlorella contains. I think his body just reacts to B vitamins and some others. I may try chlorestyramine if necessary. Right now his body is much more at ease and the tics are back down to a minimum. He's back to giving hugs and having pleasant conversation, and for a 14 year old thats saying alot. Going to take things much more slowly. I'm just doing lemon for liver, probiotics, biotin and transfer factor for now. Just wanted to share.

laure, in your switch of antibiotics I couldn't remember whether one was bactrim. If it is, some kids do not react well to it. It has to do with the fact that it is a sulfur drug and if your daughter doesn't tolerate sulfur well this will make her worse. Sometimes this is not known until the drug is taken. I know she seems to be getting worse but that might be because you are off all antibiotics. You know how that can be even with PANDAS. Did you discuss changing up bactrim for something you haven't tried yet? Keeping you in my prayers. Kathy

Are you supplementing anything for the depression? My son had it quite bad, and I decided to try SAMe. Its been around a month or so and I think it has help some. Maybe enough of the edge to not let it overtake him, you know? I give it with acetyl-l-carnitine. Started with 200mg a day. It doesn't hurt that its a fair detoxer as well.

I think probably it was a combination of die off and over stimulation of the immune system. I am going to start over, increase dosage with theralac. Then wait some time and introduce VLS3 more slowly, maybe one pill every other day and see what happens. If same reaction, I'll know it may be something in the VLS.

Could you share the brand your using? I may go back to theralac but its only 30bil per pill and very expensive for just thirty days

how do you know whether its an overload with 225billion and over stimulates the immune system, dieoff or Strep therm? I'm alittle confused on this one.

I don't know whether I have to worked up so much more slowly or the brand is not for him. Sometimes things are so sensitive that I just want to throw my hands up and say I give up. Aghhhhh...

May I ask what brand Chorella you use? We're using Sun-A brand. Supposed to be very digestable. Worked our way up to 5g. You can get 500mg pills. I give all 10 pills at once which you can, but some split am and pm. i will be increasing little by little.

We're using Sun-A. Supposed to be very digestable. 500mg per pill. Son takes 10 pills.

Can you share what brand you're using? Did you come across any pill forms that would be good options? I'm already looking at having to get a drink into him with fiber/miralax to prevent constipation/encourage BMs, so don't see much success in having to get multiple "disguised" drinks into him. I see NOW Foods has a 1000mg chlorella tablet - that might be an option. Any input? Justine - Yes, also read bad stuff about Actos - things that made me discount it as an option for us. But now I can't find it again. We're using Sun-A brand. It's supposed to have very good absorbtion. It is recommended to take high doses. Small doses won't detox. While you feel the heavy detox is necessary, you are suppose to take between at least 6g, ideal is closer to 10g. Then you can maintenace down to between 3g and 5g. I get the 500mg pills so he can take less pills. I am giving this to my older non-pandas daughter for constipation. Its working for both kids. My son has actually had some better days lately. Of course there is always a step or two back. Tics have been slightly milder. Whats known about chlorella is that you really can't take too much. No toxicity. I'm not opposed to chlorestyramine if I feel this doesn't produce results.

We're using chlorella instead of chlorestyramine. Read on Klinghardts site that he feels it as good as or better. You have to work up to a high dose. The recommendation is 10g. We are at 5g. Worked up slowly to this. Not all brands are alike though. Researched that as well.

Essential - Acetyl-Carnitine - helps with motor tic and the SAMe SAMe - depression and detox Trans Factor - immune Biotin and B2,B5 Chorella - detox,immune - a specific brand Magnesium Quercitin - allergies, inflammation and detox Probiotics - just switched to VLS3(225 billion per cap twice a day) 5HTP zinc

I was afraid of that. Do you use anything else right now? I was also considering flax seed oil. Although I read its an inferior source.

That sounded interesting until towards the end it describes the other ingredients which I guess include some fish oil. all they say is its a trade secret so I don't know.

Thinking of trying krill oil. I know I need to add omegas in the mix of supps. Tried a couple fish oils with increase of tics which I know some kids can't tolerate this kind of oil. Anyone try krill?

Congradulations. Your light at the end of the tunnel has arrived!

Two kids at $5k? The quotes I got for one child is not near that. Your lucky.

Oh she has allergies, certainly. I have hundreds, brother takes shots, we all take a variety of allergy meds from over the counter to prescription to shots. Do you think she can take claritin at the same time as all this other stuff ...why not I guess, never thought of it. good suggestion. Got off the phone with Dr. J's assistant ... he really wants her to stay the course, and go for PEX too. dh doesn't want to risk going off right now b/c son is home from college with pink eye and something red and painful going on in his throat - I have to agree, the timing would be dumb. When son goes back next week we might try to go off everything... Thanks for hanging in there with me! Can you elaborate on the PEX. Does he think she will not get rid of toxins? PEX is so $$$$.

Thanks I did read that. But I just found a blog called Linda'sLymeDiseaseJournal and they were discussing this subject. Some who wrote on this got tested and were discussing which HLA type doesn't remove toxins well or at all and it was the HLA - DR type. Still reading around...

Thank you. On another post I started, an article mentions HLA DR2 & HLA DR4 as a predisposing factor. Since we're positive for HLA DR4, I would appreciate hearing what you find. Please, please. I have been resurching this as well and still can't find what HLA gene expressions hinder lyme detox.

What kind of setbacks did the kids have? symptoms? And if you can share, do you know what HLA's are mold susceptible?