justinekno

I know the feeling. I hope he feels better soon.

I feel like "co-infection" is a bad word. I sooo don't want to go down that road. Lyme is enough for us. I can't take much more

Great.

On the advice of our dr which is based on testing, we do vit c & d (in winter) and zinc, b-6, magnesium, s. boulardii and a probiotic. Thank goodness he has learned to swallow pills this year! I know, I sometimes hesitate posting details but then I find other people's details helpful so maybe mine are too? Who knows. Next thing you know, I'll be giving out my home address

Oh, I guess we are just not the "norm" but then why start now?!! Nope, more the opposite. The dreaded "D" word.

Were you guys experiencing constipation prior to using the bentonite clay? We're having problems staying "regular" when it seems like everyone else posts about having the opposite problem when using antibiotics. Depending on your particular chemistry and body make-up, it can be difficult for the gut to rid itself of all this detritus, particularly if you're not partaking in a high-fiber diet. I would think kids, especially, might be more prone to holding onto some gut detritus . . . at least mine would be . . . because "high fiber" is like a dirty phrase to him. We eat only whole-grain breads and he's pretty good about eating fresh fruit, but he's not big on greens or cereals, let alone bran muffins or bran cereal. So, we decided to try the bentonite clay, and it appears to have worked for us. There was an immediate shift in his gut response, and quite honestly, his attitude, within the first week or so of using it.

We use HLC MindLynx powder by Pharmax - 12 billion cells per 1/4 tsp - two times a day. We also use saccharomyces boulardii twice a day. I use Activated Charcoal on weekends (bc we have more time to space things out).

We actually don't see a LLMD until next month so we're just being guided by our PANDAS dr and Integrative dr for now. Neither really had suggestions so I guess we will just grin and bear it until our appt. I'd like to think it's herxing but I'm not sure. It's somewhat frustrating because we really saw a whole new child over the past three weeks and it was exciting to see. He's had Lyme since he was born and so we were seeing things we had never seen - in a positive way.

Elizabeth, So glad you said this. We are having some serious mental issues (eye tic is much worse, moody and less focused at school). We made such progress these past 3 weeks on the new Lyme protocal and then we had the fever and exhaustion and now BAM - regression. Justine

How is your son doing on the Zithromax and Augmentin?

Yes, she said it appears that in the case of PANDAS like symptoms and a positive Lyme test, there can be a positive CaM kinase II test. She said it is also possible that the person had strep and the tests might not show it. I believe this is something she is looking into further.

How is this done?

Hi Nancy, You may get more responses if you post this on the Lyme board.

Just a quick update. My son ended up complaining of a sore throat too so I am assuming it wasn't herxing after all. It was odd though. Came on quick and now he's fine. He didn't have much energy over the weekend but seems back to himself this morning. Must have just been a 72 hr thing.

I have to think that if bands 31 & 34 were so important that they were going to be part of a new vaccine, then they must be pretty significant to Lyme.

Ah, that's my backyard! I was living near Lyme when bitten by a tick some years ago. How classic is that?!!

How is your dad doing?

I would think the grape flavoring could be suspect. Is she able to swallow pills? The zithromax pills are pretty small unlike the Augmentin which are big.

As a family we stay away from all food colorings, high fructose corn syrup and excess sugar along with any artificial sugars. With that said, when my son had food sensitivity testing done 18 months ago, my son showed a "moderate" reaction to Aspartame and Brilliant Black. He showed "mild" reaction to Blue #1, Red #1 and Yellow #6. I have no idea how to decipher which number color is in what so we just stay clear of all of them. My son's tics and anxieties will increase if he has any of these ingredients or if he has excess sugar (we learned the hard way with a Dunkin Donuts blueberry muffin one time on vacation ) Although it would be nice if at some point we don't need to worry about reactions to food, we have come to eat this way as a family so I can't imagine letting the "ickies" back into our life!

My son got a rash on his arms when he first starting taking zithromax although it wasn't itchy and he had no swelling. He went off of the zith and it subsided. We are now back on zith and augmentin and the rash is back. We are attributing it to a herx like reaction as he has no other symptoms of allergy and the intensity of it tends to cycle (although it never completely disappears). Our dr said the key to knowing a herx is if it cycles and doesn't stay constant. Maybe some well versed lyme moms will be more helpful?

Did I read in the book "Cure Unknown" that they used beagles to test this by letting them be bitten by a tick and then euthanizing them for an autopsy? I grew up with a beagle so it made me kind of sad

This is great! Have you looked into the children's book "Let's Get Well" that is listed? I wish there was a sneak peek into like Amazon does! The books says for ages 8-12.

We have it compounded at a compounding pharmacy and insurance pays for it. I have only ever paid a copay for it each time. I asked about it and was told we would have to get it from a compounding pharm. and that we would probably have to pay in full. It is close to 500$ from what I was told. Even the small amount in the pill can cause probs?

Wahoo - finally some good news!!

My son has a rather weak knee jerk response when tapped by the hammer. Our neurologist has done the tongue depressor thing and he always responds to it. Our neurologist has never given any indication that this is something to be concerned with. Although he's the same dr who said my son would outgrow his tics so who knows. Interesting definition though. Hmmm.