have appt. w/Dr. T...what to ask?

[frikfrak]

Hi,

 

I just made my 1st appt. with Dr. T in 1 month. No sure if my son (22) has PANDAS but everything fits.

He's been treating w/a lyme doc for 3+ years and still not better.

 

All mental, nothing physical.

 

Got some blood work back today:

 

ASO 372...down from 402 back in Oct. 2012

 

Ammonia levels higher...71....was 58 on last test

 

Positive for Streptozyme scrren and streptozyme titer

 

Copper low, 0.50

 

M. Pneumoniae AB (IGG), EIA...3.17 high, normal is <=90

 

IL-4 still high at 6.03....normal 0.0 - 4.1

 

Cystine...low 13.4 Hydoxproline..high 52.4 alpha-aminoadipate..high 2.6

Beta-alanine...high 19.3

 

A couple of others are high also.

 

I told the office I'd bring these tests results with me but they said the Doctor would probably want us to take more test (his own blood work)

 

Is there anything I should ask specifically? Bring with us?

 

thank for any help

His Mom

 

 

[lfran]

You may want to ask if you can get Dr. T's blood work done ahead of time -- that way, you can discuss the results with him at the appointment, rather than going in, getting the lab request, and then having to schedule another appointment to discuss the results.

 

Be forewarned, though, he typically orders about 22 tests. A lot of blood, and a LOT of money, depending on your insurance. You might want to ask about getting pre-approved for the lab work, if you think it's possibly an issue.

[frikfrak]

thank you, that's a great idea. I'll call them tomorrow

[LNN]

Some of these labs suggest your son might have some methylation problems that are preventing him from getting better.

Ammonia levels higher...71....was 58 on last test

Copper low, 0.50

IL-4 still high at 6.03....normal 0.0 - 4.1

cystine...low 13.4

 

These are all measurements you'll come across in any discussion of methylation blocks. Several of us have found that zinc/copper ratios that are off can cause emotional/behavioral issues regardless of infection. I would certainly supplement with copper, as copper is essential to dopamine regulation.

 

The high ammonia is also going to add to behavioral symptoms. Supplements that help with ammonia are small doses of Yucca or butyrate. High ammonia is a common problem for those with a CBS gene mutation (my DD and I have this) and molybdenum also helps. CBS also plays a role in cysteine levels.

 

I know it's not everyone's answer, but understanding what unique roadblocks your son has can help you work around those issues. Sometimes, the body can't get healthy until at least some of these roadblocks are cleared. My DD was on abx (bactrim+zith) and for a time, her Pandas-like behaviors got much better. But not completely and then she plateaued. When we did 23andMe testing ($99 spit test) and found her various roadblocks, and she started taking supplements to address her unique issues, she became the child I once knew. She went from bipolar to a normal, sometimes bratty, sometimes angelic kid. For her, methylation issues were her golden ticket.

 

I replied to another thread of yours about choosing a doctor. Of all the doctors in the northeast who have an understanding of methylation, Dr O has the most experience. Which I why if I were in your shoes, she'd be the one I'd see.