ptcgirl

I absolutely KNOW that my pandas 12dd has very dilated pupils during anxiety or OCD. Without a doubt. I think it is a very common phenomenon with any type of anxiety.

Hi and welcome!
 
Good for you for testing with Igenex.
 
Both bands 31 and 39 are lyme specific, meaning that only an infection with borellia (lyme) will result in these bands showing up on the Western blot. The IND (or indeterminate) notation means that the band is not showing up strongly, but is there. Our LLMD (Lyme Literate Medical Doctor) considers an IND band to be a positive indication of infection.
 
Did you test for the co-infections (bartonella, babesia, ehrlichia, mycoplasma) as well? Igenex runs these too. Just asking because bartonella is a known cause of raging in infected people.
 
The increase in symptoms you see with abx treatment is most likely a die-off reaction. Ticcing and emotional lability are two of my daughter's symptoms which ramp up whenever we change or increase abx protocols. These usually return to a lower baseline after a week or so as her body is able to detox. Just a head's up - steroid use is usually contraindicated with bacterial infection as it supresses the immune system.
 
Please read through the archives, it is a wealth of information.

OK, so rereading, DS is homozygous for VDR taq, BHMT-08, and CBS A360-A, and heterozygous for MTHFR C677T, a couple of COMTs, a couple of MTRRs, a few more of the BHMTs and SHMT C1420T. The treatment for these is to go on an animal protein-free diet (oh how popular I will be in my house) and supplementing with a number of different vitamins. I am supposed to take care of the CBS first although this CBS mutation is not the worst one. (yay?) This is quite complicated.

PTCgirl - I am CBS +/- so I ca't join in any wine tasting. High sulfur But that's ok, I'll sip my umbrella drink instead.
The good news for you is there's no CBS and no VDR Taq - makes life a little simpler, tho I'm sure you don't feel that way. A quick summary of your results says you have trouble with neurotransmitters! Shocking, I know.
 
The best way to start (for me) was to cut and paste this entire document http://www.heartfixer.com/AMRI-Nutrigenomics.htm into Word. Then delete the gene sections that don't apply to you (and the recipe fluff at the end). Then go back and really read what's left, highlight or bold things you think are important. In some cases, it can feel conflicting, especially for those of us with VDR Taq/COMT combos. But you don't have that. The other stumbling block will be when you have some genes that talk about needing methyl donors and others suggesting you need methyl users. So trying to figure out that balance requires some gut guesses based on knowing your child's personality and then being prepared to screw up along the way.
 
Mayzoo here's the Yasko links:
http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf
and a helpful 1.5 hr video
http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1-
 
The best "quickie" intro to methylation is the first few pages of the heartfixer link I pasted above in this post. But it gets very complicated and will require some studying. I've read Yasko's book twice and will now re-read it for a third time with my results in hand. But IMO, it's worth the investment.

My only input so far is it looks like a toddler got a hold of your computer .
 
The MTHFR C677T I believe is a methyl folate mutation. LLM will be more helpful I am sure . Maybe, I can be more helpful in a few months, or maybe you can help me in a few months

I just got results for my 3 children back over the past week. I have read and studied until my brain hurts. Amy Yasko's book is very helpful and it's a free download on the internet. Also, she has several free online video's that are both helpful and confusing at the same time. If you go to her forum (you have to become a member), there is tons of information there you can read also. I have found that watching her videos and reading the information there has helped me. Also, LLM has been a great resource.
 
Dedee

My vote is for a pina colada with a little umbrella on a Caribbean island..even if some gene says pineapple is bad for me.....
 
There are a few practitioners on the FB MTHFR Support page or you can go to www.mthfrsupport.com to their find a practitioner section. The main contributors to the facebook page are not MDs - one is a chiropractor, one a nutritionist, one a PhD in physical therapy. They seem to be well versed in methylation issues but my impression (I have not spoken with any of them) is that they deal more with adults and adult chronic health problems (arthritis, CFS, thryoid, cancer, etc). I don't see mental health issues addressed as often and while I know Pandas is mentioned, it's mentioned by the parents who post and not necessarily the practitioners. So I think they might be able to offer a perspective and guide you regarding supplements, I don't know how well they'd be able to incorporate that into the saw-tooth pattern of Pans flares where sometimes you need more or less of something.
 
Their value I think depends on your comfort zone. If you're the kind of person who really wants the reassurance that a trained professional can give, then it's probably worth a phone consult at least. I know a few people here have done consults and maybe they'll post about their experiences. I did not do a consult in part because I'm pretty happy with what I've been able to do on my own thus far. But if I get stuck, that view may change.

I am a rum and coke or wine kinda gal, but sometimes my drinking one does help a few around me . Good luck and I will be following behind you soon........
 
I don't have my kiddo's results yet, but they are in the works. I also remembered she had very extensive testing through a hospital we went to. They did a first pass analysis, then later when a micro analysis was available, they did that. I am trying to get her results for that too now. Then I will be wading through those for a while I am sure.

So as I sort of expected, DS17 has both CBS and BHMT hetero mutations, hence the failure of my attempts to give him "nice soothing epsom salt baths" that turned him into a furious ball of anger looking for a target. He has a bunch of other mutations too, some of which require conflicting support (both push and restrict taurine, for example.)
 
I really wish there was a doctor where you could just go up to them and say, "Here are DSs 23andme results, please tell me what to do," and he would know, as opposed to asking what I want to do. (What I want to do is have several large gin and tonics, but that doesn't seem helpful to anyone but me.) I know that I need to go to all of the references that LLM has very very helpfully provided and read through them and figure it all out, (and then break through DH's wall of denial and disbelief) and I will do that, but is there actually a doctor anywhere near NYC or available on Skype who can work with me on this?
 
OK, whine is over. I should actually be happy, since now I have an actual clue as to what is going on, and that puts me ahead of 90% of the doctors that I have worked with!
 
Thanks to all the hardworking people on this board who figured this out (LLM) and who fearlessly post about it so the slower of us can catch up and get it!
 
Lynn

Yes I've done the CBT and ERP but my ocd switches. So once we worked on "one" thing it just switches to another thing, and then I have to start all over with that. I feel completely helpless against it b/c the CBT doesn't work at all, I just battle the thoughts all day.
 
 
We've been contending with OCD for nearly a decade now, and we've come to refer to it as The Great Shape-Shifter . Yes, as soon as you find a therapeutic response to one issue, it moves on to something else, always seeking a toehold to keep you under its control so that you don't "forget about it," like some sort of sadistic, spoiled brat! From the stories I've heard from other families, it's just in the nature of OCD to switch its focus; I actually heard a young boy on public radio one time talking about his OCD and describing it as a never-ending game of "Whack-A-Mole."
 
But I do think that good . . . and I mean "good" . . . ERP techniques can help with all forms of OCD; it's just that you do have to keep adapting the exercises, the exposures, to address current issues. Like a lot of other families here, we've experienced lame ERP, "okay" ERP and good, effective ERP, and I think the really good ERP therapists are tough to find.
 
Plus, you need the support of friends and family around you to sort of "hold your feet to the fire" . . . sort of like the tough love your support network can give you when you're trying to commit to a new diet or exercise regimen . . . and hold you accountable for practicing the ERP at home as well as in the therapist's office, even in the heat of the battle with the OCD. In my experience, when the person with OCD is also feeling quite ill, we tend to cut them more slack because of our level of sympathy and concern for their overall health and distress, but unfortunately that can backfire if the person indulges the OCD and continues with the behaviors because they're not feeling strong enough on their own to push back, and we as their loved ones are turning a blind eye out of kindness.
 
Fighting OCD is one massive Jedi Mind Trick!

A year ago today DS (14) had the light-switch turn back off. Went from five hours per day of ritualized cleaning to zero. Stopped exactly the way it started - entirely and all at once. We got our son back, and he's such a delightful person. I pray that the worst is behind us and that every child gets such a reset.
 
 

He had a wonderful time.

Just dropped DS off at the prom. He's going with several friends. Never would have dreamed this several years ago.

Well if they have not been responsive to PANS, I would go ahead and start looking for another doctor. What you want to know is what the IgG and IgM levels are. The IgM shows active infection and the IgG indicates past infection. However, you can still have active infection if only IgG is elevated if you continue to see it rising and not falling. If they are saying it is positive then most likely your son has both elevated IgG and IgM. That most definately causes PANS symptoms. Myco is a stealth pathogen that has the ability to hide dormant in different areas of the body so he doesn't necessarily have to have respiratory symptoms to be carrying the infection. It is also very hard to get rid of. Your doctor will most likely want to give you one treatment dose of Zitromax and that's it. Problem is that it takes anywhere from 3 months to 2 years to clear chronic myco. Most doctors are not up to date on how to treat Myco p. You should find an LLMD. They know how to treat myco. My daughter showed some improvement on Biaxin but it wasn't until an LLMD started her on combination antibiotics that she really started to improve. Do your research. There is much out there by Garth Nicholson. He is considered the expert on Myco p. Don't fool around with a regular doctor. You won't get what you need. JMHO.
 
Dedee

This is what I've learned through the IVIG process. My DD13 just had her 6th one. Some of the IVIGs were hugely successful and others were kind of blah. I've finally figured it out although it will seem obvious when I state it. When she had an active infection that was not being treated the results were not as good (still an improvement, but nothing in comparison). When she was infection free, the results have been glorious and amazing. IVIG is a reset button for her.
 
I like to think of this analogy: if you have a vacuum that has a clog that you don't (or can't!) remove, no matter how many times you hit the reset button (a button designed to tell the vacuum it is okay to start trying again) it still isn't going to suck up your dirt/work properly. Now, if you take the clog out, AND hit the reset button , then the vacuum starts to work well again. It may still have a few bumps along the way of course because dirt is always coming at it, but it still functions and works. Until the next clog.....
 
This is just the way I view it from our experiences. I'm hopeful that we are building up her immune system so she doesn't get so clogged. She just got over a virus and seems to be okay, so I think (praying!!!) that she's finally getting to a point of not having to get the IVIGs (or at least as often). They have been a true life saver for my daughter. She had PANDAS since just before age 7 and we were really afraid nothing would work. She is about 90%. So worth everything we've paid ($ we had to ask family for), the travel (we 2000 miles each IVIG), homeschooling, etc. We have our beautiful, sweet daughter back. I worry all the time that we will lose her again, but I cannot over state how much they've helped.