Lyme question - how to test your progress

[hugs2day]

LLM,

 

Just throwing this out there something to consider might be the start of puberty which can do weird things to any kids brain. My son is 10 and is starting puberty early. Dr. confirmed it and I was actually going to post if anyone elses children are showing early signs of puberty it does seem to trigger OCD. Just a thought. Good luck in your search! Your the expert in my opinion as you have been so helpful to me in my families situation.

 

Another thought is maybe he is getting his 12 year old molars. Keep us updated.

 

Thank you.

[LNN]

Hugs - I don't think it's puberty yet. No signs that I can see.

 

But here's a strange twist for all of you to make heads or tails of...

The yeast thing struck a chord with me for several reasons -

 

first, when this started 6-7 weeks ago, there was no sign of an infection and the addition of augmentin made no difference. So a Pandas flare is not high on the list of culprits. And you'd think if it were a lyme flare, the addition on a third abx would produce some sort of effect.

 

second, he's been on the same abx combo (zith + rifampin) for a year. We took a 3 month break in the summer and re-started due to some backsliding in the OVCD/brain fog department (which in hindsight, may have to do with methylation on not lyme). When we re-started the abx in Sept, he didn't herx. So unlikely he just suddenly started to herx from this combo in february. So herx becomes an unlikely culprit.

 

This made yeast a reasonable thing to mull over. Yeast could certainly crop up after so many years of abx, out of the blue. It can cause OCD and tics. I didn't see age-regression/silliness (which I've seen in past yeast infections) but he's also older and spent an awful lot of time on X-Box, which is a new fixture in the house. In the past, he's had his sister to provoke the silliness.

 

So on a lark last night at dinner, I'm doling out his pills and decide to leave out the zith+rifampin. I give him a garlic pill, which he always gets at dinner. At shower time, he's telling me how the OCD is driving him nuts and how many small "feels right" rituals he had to do that day. At bedtime, I give him double dose of probiotics and a second garlic pill. All other supps stay the same (magnesium, psyillium, core). This morning, he says "Mom, my OCD is way better. I hardly feel the urge to do the eye blinking thing."

 

Now, even if it were yeast, in light of the Easter candy feast and in light of doubling up on probiotics and garlic, I was expecting a herx for the next few days, if it was indeed yeast. I've never seen yeast respond so quickly (even in my personal experience - sorry for oversharing).

 

How do you vote? Yeast? Or was it something about not giving abx last night, aside from yeast? If so, what the heck?

[SSS]

Oh, I think yeast is a huge topic. Huge. My God, we worked on yeast for years on dd. And I would see black and white results.

 

It was also a huge issue for myself- Diflucan was my drug of choice for a long, long time.

 

Can't guess for your son- but the yeast beast is very real.

[tpotter]

Christianmom - Thanks for the lab links! Unfortunately, they can't be found when I type in our state (CT). So not sure I'll be able to get them done here, but I'll talk to the LLMD.

 

SFMom/Smarty/lfran - no symptoms of any sort of infection. I know parasites can be stealthy but there's nothing aside from OCD. No erratic behavior, no physical symptoms, no gut distress or cravings (other than a 10yo boy who's always hungry). But I'll run these ideas by the LLMD.

 

Cobbie - yes, yeast popped into my mind this weekend. You know - just after I handed him a basket with 20 pounds of processed sugar! (kidding about the 20 lbs). Will definitely ask about a candida antibody blood test.

 

I'm also going to stop Vitamin D supplements tho I'm doubtful that's the problem - he's been on D for over a year without issue. But just to rule out...I may also break out the motrin or enhansa to see if that helps - tho it's always helped more with the mood/impulsivity piece and not the OCD piece.

 

TPotter - my LLMD is an ART practitioner but it's not a diagnostic tool I can embrace. I know some swear by it and I mean no disrespect to those who are guided by it. But it's never been something I could wrap my brain around. Tho my LLMD has offered in the past, it's something we agree to disagree on. We're not spending any money on any tests at the moment (aside for 23andMe and regular CBC panel to keep an eye on liver and general health). The being broke part comes from a half decade of medical treatments/tests, not from any recent tests. I just want to avoid going on an expensive scavenger hunt and know that the moms here often have great ideas.

 

Thank you all for your thoughts. Gives me a good starting list for next week.

I totally get the part of being broke about 1/2 a decade...we're in the same boat. At least you have the option. I know that ART testing seems so bogus, but what it has found has been nothing short of accurate for us...and not just from one person doing energy testing. So, I thought I'd mention it.

[sf_mom]

My vote is for yeast, fungus or both.

 

If the yeast has really set in, I think you may need bigger guns (diflucan, hd Nystatin plus Garlic pills to treat). If you find yeast is the problem, all family members should take the Garlic pills or similar while DS is being treated. It took a good 8 to 12 weeks to make headway. We saw a lot of talkativeness, silliness, attention, moodiness that started day 3 of yeast treatment as herx that completely resolved within 12 weeks. When the herx started it felt very intense for about a week and then each week got better and better.

 

I think its possible the reprieve you saw in OCD was from stopping antibiotics and not from getting at the yeast "yet".

 

Here is why: We had to stop 2 antibiotics with younger DS last Friday due to his inability to recover from flu. We saw him perk up within 24 hours of stopping... seemed symptomless from Lyme et al just stomach issues, tiredness, headaches from flu. He also started eating again after almost 5 days. Per our LLMD this morning, kids will typically get a bump up when stopping antibiotics. If they regress by day 10 they think its more likely due to Bartonella infection. If it takes a month or two to see regression more likely Lyme or Babesia is the issue. We will be restarting antibiotics as soon as he is able to hold food down for 3 days. We restart with diflucan for 3 days on top of HD Nystatin and then restart Azithro when done with Diflucan.

 

I would seriously consider VEGA test again especially since it is covered by insurance. It would be interesting to see if those numbers are normal. Especially, since that last time you took him off antibiotics it took a while for things to worsen, not 10 days and perhaps the bartonella is gone???

Edited April 2, 2013 by SF Mom

[LNN]

What is VEGA? I found his 2009 book but only see him talk about VEGF - is that what you're referring to?

Why would the whole family need to be on garlic if DS had yeast? (DD cannot handle garlic or any sulfur at the moment as we treat her CBS methylation road block).

 

I will edit my morning post to say the eye blinking is better but not gone. The OCD is not as gone as DS thought (which actually makes a lot more sense to me). Will stay off abx for the week as an experiment and keep notes. Then see what the LLMD has to say next week.

[PhillyPA]

See if your LLMD will give your son a trial of Namenda. This drug took care of my son's OCD. He now has super mild OCD that turned out to be a good thing. His OCD is that he is now a cleaner. I don't mind it at all!

[sf_mom]

Sorry, YES that is what I am referring to... it is VEGF and not VEGA (Lyme Brain). AND, I've read Schaller update many times.

 

Per our Pediatrician who specializes in biomedical treatments for Autism and has dealt with a ton of yeast problems in kids, yeast is contagious so if one person in household has it most likely all have it, it too will form its own biofim in gut. However, that does not mean you need to have everyone on prescribed anti-yeast/fungal you just need to address together as a family. Perhaps not Garlic for DD but some other anti-yeast herbal GSE, Oil of Oregano or homeopathy of Candidate.

 

Good luck off antibiotics. I think the timeframe of decline can be very important to determining what is left to work on. I know you'll be watching the next 2 weeks very closely.