chubbermommy

rowingmom, how much taurine was your DD taking? I thought I had read somewhere that taurine can cause excitability (increasing tics) which we definitely don't want.

That is wonderful!! :) :) Who is your homeopath? We are not getting better so I am looking more into homeopathy now.

Thank you for sharing that. I also read and re-read the success stories on this board. I'm so happy for you and your son. One day, we'll get there too!

lindamw, I could've written your original post myself. I also wonder if the flares he has are related to the Lyme life cycle, as sometimes he gets worse for no apparent reason.

I realize now it was very low. I have 120mg capsules, so I'm going up one capsule a day, making sure he can handle it. At 3 capsules, tics did not change. Today I'll try 4, which would be 480mg. I don't know if this can help, but everyone with lyme kids seems to be supplementing a whole lot more, so it can't hurt to try.

If you are deficient in Mg to begin with, will it take a few days for the levels to increase enough to see a difference, if any? DS was taking 120mg magnesium glycinate (has been for the last few months) and ticcing very very badly lately. I doubled his dose last night, and will do so again tonight. But we haven't seen any changes so I'm wondering if he was so deficient that it will take a while. Or would I have to keep increasing gradually until something good (I hope) happens?

I can't tell if the NAC is actually doing anything. It's been a week since I started it, 500mg a day. He's no better, no worse. Is glutathione absorbed well transdermally? That certainly sounds more acceptable to DS than a suppository!! Very frustrating. No idea what is going on. Really not into the Christmas mood.

We're using NAC for detox, because the body makes glutathione from NAC and as you know, it's the 'mother of all antioxidants'. ND believes DS has a lot of trouble detoxing. NAC is good, but glutathione is better, but oral glutathione is broken down (?) in the digestive tract and doesn't make it into the blood stream, so there's really no point in taking it orally. IV is best, but he'd have to do it regularly and we're paying out of pocket, so expensive. Another way is glutathione suppositories, so it bypasses the digestive tract and gets absorbed into the blood through the rectum. It's sounds so unpleasant but I don't know what other options we have if the NAC doesn't work. Although the S-Acetyl Glutathione you're using, from Xymogen? sounds pretty good. Is it having any effect yet?

DS is currently taking 500mg a day of NAC for liver support and detox help, as it is a precursor to glutathione. I'm wondering if we should try glutathione (liposomal? suppositories?) instead as he needs detox help. Anyone using either and finding it makes a difference? positive or negative What brand of glutathione is best? thanks!

!!!!! WOw!

What kind of reaction would you see if you gave your child a supplement that they couldn't handle? Anything from a gradual increase or worsening of symptoms, to the inability to get well completely, like something is holding you back? Or the onset of new symptoms? Of course it depends on the mutation, I realize. I think we need to buckle down and do the 23 and me.

I'm not sure how to deal with this situation. For the past few months, DS has had a flare up every month or so. Whether it's related to the Lyme life cycle or parasites, I don't know, maybe it's both? He flares around the full moon, and so people have brought up the possibility of parasites. His tics get more frequent and more 'severe' - i.e. the sequence lasts longer and produces a much larger, full body movement. It lasts about a week. Then he goes back down to regular ticcing (it hasn't yet gone away). He is currently taking augmentin and clarithromycin, and some herbals Biocidin and MC Bab 1, which are partly anti-parasitic but he's only on one drop a day. We do lots of detox. And probiotics, sacc B. I've upped his detox this week but it doesn't seem to have any effect. So if it's parasites growing/reproducing, detox wouldn't help? Should I increase the herbals to two drops? I also don't exactly understand how parasites would cause a flare? Can someone explain to me? I realize with a dysfunctional immune system, the parasites have more of a effect than on a healthy immune system.

Ticcing was DS' first symptom and remains pretty much his only symptom. He started suddenly also, and a throat swab was positive for strep. Later on, we found out he has Lyme, which, in hindsight, I believe caused the whole immune dysfunction and the strep was just the straw that broke the camel's back. Just because a throat swab is negative does not mean there's no strep. Strep can hide out in different parts of the body. And if it's not strep, it could be some other trigger (Lyme and its co-infections, mycoplasma, etc).

Oh wow! I did not know this was a thing! My son has this I think! Whenever he hears my DD coughing (even if it's a little throat clearing cough), it makes him mad and triggers a sequence of violent tics. Is there something similar for visual stimuli?

We do abx breakfast, lunch and dinner, and binders away from abx in between (except during school days, when he can't get any in the morning, but I'll give him some after school). So our day looks like this: 7:30/8am - abx + some supplements 10:30am - chlorella binder + burbur etc. 1pm - abx 3:30pm - chlorella + burbur etc. 6pm - abx + supplements 8pm - probiotics, Mg, sacc B I do give burbur, pinella and parsley throughout the day at any time if I feel he is herxing or flaring.

Thanks rowingmom. I may not start using it yet, I'll consult with ND and file this info away for now. We use chlorella for binder; I'm not too sure about using DE on my son.

What brand of cilantro do you use? Tincture?

He is gluten free, and very low dairy. He's doing better today. I think he might have been going through a massive herx. We'll see what happens this week.

That is what I believed also about detox: the primary issue is the toxins from bacteria/viruses need to be flushed off. But also, to support the liver, which is the main organ for breaking down the medications. The liver can become quite taxed (especially in our little ones) when taking so much. I'll tell you what we do to detox: 1) epsom salt or clay baths, almost every night 2) lemon water 3) chlorella tablets to bind toxins 4) burbur, pinella and parsley drops from Nutramedix 5) NAC (once a week at the moment) for liver support 6) boswellia complex (boswellia, ginger, turmeric) mainly for inflammation, but that can be the results of die-off It seems a lot! But I have learned the hard way that if I slack off on detox, then we pay for it.

Oh, did I forget probiotics? We do probiotics, 75 billion units (or whatever the units are), and also sacc. B. He does have PANDAS/PANS. He was initially diagnosed with PANDAS b/c his throat swab was positive for strep (he was asymptomatic), but now I believe his immune dysfunction was caused by Lyme in the first place, and strep just happened to come along. But we haven't done other tests like Cunningham panel to say for sure he has PANDAS/PANS.

Thanks ktdommer. I believe this started summer of 2013; I don't think it's congenital, but who knows? Unfortunately, we don't have an LLMD We have an LLND who trained with Dr. Jones here, but she doesn't/can't prescribe our abx. I realize we don't have a cyst buster too. I will ask at our next appointment.

Thank you for this; I needed to hear it. I feel like I'm always treading water, never really getting anywhere. I don't like this feeling of only surviving and not actually progressing. I'll take comfort in the fact that my DS is happy 95% of the time and able to go to school, be with friends and be (almost) like a normal kid. I like to be in control so it's hard when I don't know why his symptoms are getting worse or not going away: is it the Lyme? does he have a co-infection? are we using the wrong abx? is he herxing, should I do more detox? has he picked up some virus from school? does he have parasites? sometimes I even think, does he even have PANS? what if he has a brain tumour? arrarrhghgarhghgh!!! Whew! I just needed to vent. I'll try to be more patient and positive. Thanks.

I'm not sure how things are going with us.... it's hard to tell if we're making progress or not. Could someone please look over what we're doing and based on your experiences, if it's a good plan? should I just be more patient? Thank you so much! I'll start with when DS was dx'ed with Lyme in May. He was not on any abx, tics were very bad - screaming tic, large movements (punching, kicking), biting himself and things. Did some herbals (Biocidin) but caused a big herx. In mid-July, we started Augmentin (1250mg/day) and things settled down slightly and plateaued - no more screaming but still some biting, and still large movements. In mid-August we added 500mg Biaxin/day. After 10 days, the tics decreased and the first week of September, the tics were 85-90% gone - so good! We were hopeful but the first weekend (Sept 6-7), he woke up one morning and all the tics were back. DD had a cold/cough and soon DS came down with it too. After a week of flaring, things settled down slightly again but he was back to like he was before he started the Biaxin. So mid-Sept, the Biaxin was increased to 1000mg/day because he had a positive reaction to it. However we seemed to have plateaued again, with some flaring this week (full moon?). My understanding is that with treatment, flares start to become less severe. I also hear from some that after adding this or that, all the tics were pretty much gone. I don't know if we're heading in the right direction? We do lots of detox, enzymes for biofilm, arabinogalactan and probiotics for gut, boswellia complex for inflammation. We're waiting on the results from Igenex for the co-infections panel. What am I missing? This is so frustrating! Thanks for any input.

I've come across a product called Proboost ( The website says "ProBoost®Thymic Protein A is a natural supplement that supports the immune system and helps jumpstart optimal immune response. ProBoost® has been called "the single immune system supplement available" by medical and scientific experts. Learn How ProBoost Works ProBoost® uses Thymic Protein A to enhance proper immune system function, which makes it a good supplement for those with diseases that involve the immune system, or whose immune systems, are compromised or suppressed. This includes: fighting infection, chronic inflammation and autoimmune diseases." Doing some quick reading, it says the Thymic Protein A helps to balance out the different T cells (helper, killer) since immune dysfunction is a result of an imbalance of the T cell ratio. Has anyone tried this product? Or heard of it? Bad or good things?

So you did some more blood work for strep titers recently and those haven't come back yet? What kind of Lyme test was done and with which lab? Lyme is notoriously difficult to test for. You can give ibuprofen (Motrin, advil) for inflammation, that may help a bit but it definitely sounds like an infection. I hope you get your test results back soon.