mmiglio

COMT and MAO both serve similar functions - they are the drain plugs for your body's puddles of fight/flight neurotransmitters. When you're threatened (or perceive a threat - real or otherwise) you generate/release higher levels of epinephrine (aka adrenaline), dopamine (a reward/reinforcing/motivating neurotransmitter) and serotonin. But you can't stay on high alert forever. So COMT and MAO are there to help your body return to a normal state of relative calm. They degrade the neurotransmitters and act like a drain that lowers the levels of these high alert messengers. If you have normal COMT and MAO, then you're one of those cool as a cucumber people in a crisis. If you have variants that make these genes run slower than normal, then you tend to stay jacked up longer than the people around you. You may "fall apart" during or after a crisis.
 
Slow running COMT and/or MAO makes you prone to worry, anxiety, quick temper, and health problems associated with high adrenaline levels (like heart problems). An astounding number of prison inmates suffer from MAO mutations and their quick tempers and tendency to see things in terms of predatory threats may have something to do with their incarcerations. It's possible COMT may play a role in OCD but it's probably not the only gene involved.
 
So what to do? Cognitive behavior therapy helps. So does taking supplements or consuming a diet rich in elements that help these two genes produce the enzymes that upregulate them or help them work a little faster/better. Niacin (Vitamin B3) helps produce more COMT enzymes and can have a calming effect on "over methylators" who likely have more adrenaline than they need. Niacinamide is even better as a supplement because niacin will cause a "flush" which is uncomfortable but niacinamide is flush-free. (However, the flush helps release histamine and it does open the capillaries, which is good for circulation, so if you can tolerate the flush, it's not without benefits).
 
Vitamin D also plays a role in COMT, so re-read Heartfixer for more advice there, depending on your VDR status.
 
Copper can upregulate MAO-A. So if you're MAO +, make sure your zinc/copper ratios are good. (too much copper can cause a host of issues, so it's about balance here). You'd want to avoid any medication that's an MAO-I (MAO inhibitor) including OTC cough and cold medicines. (they'll often carry a warning on the instructions saying do not take if you currently take an MAO-I). Curcumin/enhansa/tumeric is also an MAO-I, so avoid that as well.
 
Being COMT and MAO +, you'll probably see nice changes by adding niacinamide (start with 50-100mg and go from there), balancing vitamin D intake, and making sure you have enough copper and avoiding foods/medications that are MAO-Is.

I am with you on the PTSD front. No MD (at least one that can help with it) will take me seriously. Sleep is a disaster for me. I can take 2000 mg of magnesium and it does nothing. I am a certified yoga and meditation instructor and I am wide awake. Melatonin only sometimes works for me. The lack of sleep and the inability to sleep make me very angry and I decided to do whatever it took to sleep. I go through periods where I take an RX sleeping pill to fall asleep and an RX pill to stay asleep in the same night and for several weeks in a row. The reduction in stress is worth it for me. Many of us are in this for the long haul so we need to take car e of ourselves.
 
I hope you find something that works for you and that you don't beat yourself up about it, but rather sleep peacefully.

Cross my heart I'll tell you I did not sleep for 16 years and as much as I tried every distressing product and protocol finally the one that helped was a Hyland's product called Biochemic Phosphates instructions are on the bottle -- like many homeopathics this one said to take it 2-3 times a day as needed and as much as every 15 minutes until no longer needed. That was me however I only had to do it 4 times to get to the relaxing sleep dose the first couple of times then I got down to just once or twice before bed.That was heaven for me. I was having some breakthrough waking and learned about Calc Carb (Boiron) and that it could be used for inducing sleep, That helped with night waking but is also OK on its own and I no longer use Biochemic Phosphates. Many nights I dont need it at all now, good luck to you.

I am no expert on this, despite my many postings. It's a topic I'm passionate about but passion does not equal expertise. So this is only my understanding...
when you test too high in B12, I think it means you have unmethylated/unused B12 hanging around. Meaning you either have too much B12 or not enough B9 (in the form of methylfoate). Think of it as trying to make purple. You need equal amounts of methylfolate + methylB12 to make the shade of purple you're after. Instead, your purple is leaning heavily toward the reddish side. You probably need to take in less red (b12) and more methylfolate (blue) to get balance.
 
So personally, if it were me experimenting with my own child, I'd keep the sublingual methylB12 but stop the methylguard, which has both methylfolate and methylB12. In place of the methylguard, I'd give just straight methylfolate. I use Holistic Health's Methylmate B liquid drops because it helps me tweak doses very easily. But once you settle on a dosage, you can use something different - tho it's hard to find things that don't also contain some form of B12.
 
This would accomplish two things at once - first, you could adjust the dose of methylfolate upward to team up with that excess B12, thus adding more blue to your puddle of excess red, making more purple. Also, by eliminating the methylguard, you'd be putting less B12 (red) into the system. These two steps "should" help sop up your puddle of excess red at some point. However, after a time when the puddle was gone, you might need to readjust dosages of both methylfolate and methylB12 and find a new equilibrium.
 
Other options would include switching from methylB12 to hyroxyB12 (Perque makes a hydroxy sublingual). This would cause the body to use up a methyl donor to convert the hydroxy into the methyl form and could possibly reduce the amount of unmethylated B12 hanging around. But my science is weak here and someone more knowledgeable might say I was mistaken about this. Do some research - don't take my word.

Bluebird hemp oil.

We use "pharmanac" and find it quite gentle and quick acting, supposedly has best absorption of all Nac, recommended by Dr.

My husband has brain issues, and bought NAC. One of the benefits he had read was to fight off colds. My daughter and I had come down with bad colds (pre pandas ) and my daughter was very sick to her stomach post NAC. I didn't feel great either. After that he poked a little deeper into NAC info and it can damage the mucosa lining of the digestive tract which is the exact opposite of what will make someone with PANDAS well.

my daughter's luvox experience was disastrous. however, it was not the"go slow and start low" dosing recommended by Dr Murphy.
we have found some help from OCD using clomipramine. my daughter has been on it for a few years.
clomipramine can also have a slight anxiolytic effect, so that may help her too.

Hello, did you see the SSRI thread I started recently? Somebody gave me some detailed instructions about what constitutes a "low dose" and slow enough increase for a patient with PANDAS. Worth taking a look at. I did some looking up and confirmed that they fall into two groups - ones that conventionally start at 20 mg (fluoxetine/Prozac, paroxetine/Paxil, citalopram) and ones that normally start at 50 mg (sertraline/Zoloft, fluvoxamine/Luvox). For the 20 mg ones, if it's PANDAS and you're playing it really safe you start at 2 mg and for the 50 mg ones like Luvox, 12.5 mg (again that's the really careful dose, some PANDAS kids get away with starting at 25 mg without side effects, but some find it too much.)

Following.....
 
My dd(9) has myco p triggered Pans. She's been on combo intracellular abx for 1 year now- it wasn't until 8 months and the introduction of Mino that we saw her myco p levels finally in range.
 
We are now considering very slowly transitioning to herbals and addressing her 1 MTHFR mutation.
 
I would also like to hear recommendations, etc. related to myco p.
 

My son's lyme made him rage. My daughter's rage/mood swings came from a problem with methylation. Methylation is a process every cell in your body uses as a factory to convert raw ingredients (vitamins/minerals/amino acids) into energy and more importantly, neurotransmitters. When a glitch in the DNA prevents your methylation cycle from running smoothly, it can create mood issues. There are two kinds of problems - overmethylation and undermethylation. For overmethylators, niacin (vitamin B3) hels with rages. For undermethylators, the methyl form of vitamin B9 (methylfolate) helps. If you go to the pinned Helpful Threads at the home page of the Pandas forum, thread #18 goes thru the testing you can use to explore methylation and lists some helpful articles.
 
Illness can also hinder methylation, since the body needs to divert nutrients to the immune system and away from neurotransmitter production if raw materials are insufficient to make both.

Yay, the methylation guru is back! Good to see you LLM, and glad to read about your son's improvements!

When my daughter had her initial onset, refusal to drink was a symptom. She did not want to go the bathroom so she refused to drink and we ended up at ER for dehydration. It went away after a couple days. I think it is a symptom because one of the drs we see asked at the initial consult if my dd was restricting food or water.
 
I second the popsicle or milkshakes or lots of fruit. The fruit has water and will help with her bathroom issues too.
 
I know you have had a rough road lately so I hope you get some relief soon.

Maybe popsicles or smoothies/milkshakes? with juice and/or aloe in it, or that pediasure stuff, not sure how that tastes so maybe it's gross, but I'm just trying to brain storm for you.
 
And I think you speak for many, many of us re/ addiction to the board. It certainly helped me keep my sanity when the thread was ready to snap, and that's a fact.
If I think of anything else I'll ping you...

NAC is very helpful for some while very unhelpful to others; the difference may lie within the methylation capabilities of each individual. In my DS's case, he is, by most indicators, an "under-methylator," and NAC has been very helpful/supportive for him.
 
We follow the dosage that was utilized in a Yale/NIMH trial for treatment-resistant OCD; there were trials for both children and adults. You can PM me with an email address and I can share that study with you, or you might be able to Google it and still find it on-line. My DS is adult-sized so we follow the adult dose, which is 1800 mgs daily.
 
Good luck to you!

You might want to pay attention to the supplements to see if you notice anything different after she takes them, specifically Omega 3's, Vit D and Nac.
 
They all did a HUGE number on my kid, amped everything up for him, the anger, depression, tics, itching sensation, mood swings, you name it - he took those supps and he exploded in any and all of the above.
 
Many PANS kids react that way to those suplements, I have to keep food w/ extra O3s in it and Vit D at bay even now.
 
Steroids also were the worst thing ever for my DS, unbelievable really how bad they were for him, but he manifested PANDAS in the tic/Tourettes fashion, OCD was in form of anxieties like your DD, no rituals, but lots of fear of germs, etc.
 
Per NIMH kids w/ tic-type PANDAS should be wary of steroid use and I can assure you they were correct based on our experiences (probably 4 different trials that were all disaster). Also SSRI's ; stay w/ the Start Low and Go Slow method, basically on virtually everything in mho.
 
The advil/Ibuprofen was a help for us, a tiny help, but a help none the less, so I would definatley give that a whirl, 3x a day, lots of water w/ it if you can get it into her. I set my watch by the dosing, if we missed one we really could tell immediately.
 
Dr. L is great, & Dr. F at Stanford as well, but they only see CA residents at her clinic.
 
Oh, I wanted to mention that DS's handwriting never really went super wonky, and his math skills seemed to stay fairly intact, although in year 2 he got serious brain fog which could have been the POTS he had by then, and/or the Babs he's being treated for now as well. He didn't have any urination issues at all until the 2nd year either, but then that started and stayed around for another year, so I think some symptoms can come and go...and then come back again sadly.
 
Hang in there, try the Ibu and hopefully you will see some positive movement.
 
ET

DS 14 was 11 when PANDAS hit. He was in 6th grade, what, 3.5 months in? He missed all of middle school, no home school, no online school, no tutoring. He didnt' have 'flares' per se, he just had 1 non-stop long 'flare' that stopped him in his tracks. There was no way he could do any type of schooling and all his social interaction also ceased completely.
Video Games saved his life, period. He's just now gone back to school, into 9th grade, started w/ 1 class and is up to 3 now, will add another next semester. He's begun to swim for his old private club and just was asked by the HS coach to join the boys team (3 weeks into season, he's so flattered) so our new normal is amazing.
Where he's been, I can't hardly believe he's where he is now. He also has been extremely sensitive to all typed of meds, paradoxical reactions all over the place. I wish you the best, it's so hard, hang in and do what you have to do. If it means he plays excessive VG...well, there are worse things. My son is getting an A in Algebra after missing ALL of Middle School math. They didn't warp his brain, I think it saved him actually and there were times when I can say he was completely obsessed, in fact he obsessed about obsessing....but somehow he's made it out the other side.
Wishing you strength, you can get through this and so can he.

If augmentin and azithromycin made symptoms worse, you could be dealing with a Herxheimer Reaction from Lyme. If Lyme is present, steroids would absolutely be counter indicated because they depress the immune system and make symptoms worse. Also, while we live on the east coast so our care is at Mass General, Stanford is known to have a wonderful PANS care. I've heard Dr. Jennifer Frankovich speak and would personally be thrilled to have her as our doctor. Here's the link.
http://www.stanfordchildrens.org/en/service/pans-pandas

Die-off response 'typically' starts within 48 to 72 hours of starting a new antibiotic. For us, an intense die-off period would typically last for at about two weeks. Then I would notice one symptom, sometimes something unexpected get better and intuitively knew the new antibiotic was working in the middle of some obvious symptoms that were far worse that would continued on for sometimes a couple of months.
 
For example: When younger DS started a new combination of antibiotics for Bartonella, he started to rage almost daily. Previous to new antibiotic he would rage but it was infrequent comparatively. At some point during this initial period, I realized I could rationalize with him during these rages when I could not previously (was only able to could keep him safe from harming himself or someone else). Eventually rages were every other day, then every three days, then every week. The weekly rages lasted for almost five months. However, since then he has rarely had a rage. Its now been over two years since he has had anything close to a rage. He is the sweetest kid without any mood issues at all.
 
In our darkest moments with this particular child we were truly worried for his future. Today, he is on a pulsed antibiotic protocol and his only symptom is nightmares/night waking as a die off response. We can predict the nights he'll be up and have nightmares based on his treatment protocol.
 
My hope in sharing our experience is you'll learn to use your intuition and "sometimes" push through in light of the initial worsening of symptoms.

I would ask your doctor if it would be possible to decrease dosage or even discontinue for a while to see if she can detox for a bit. If she improves then you will know that the symptom intensification is due to die-off. If you find no improvement with removal of abx then you know the abx she is taking are not addressing her particular infection.
 
She will need to take probiotics as well. Much of the body's immune system is housed in the gut and the symbionts need to function at full capacity. Antibiotics (and glyphosate as well) will preferentially target beneficial bacteria, leaving only pathogenic forms.

I don't know the BioGaia probiotic, so I can't speak as to whether or not another one would necessarily be "better." I will offer, however, that my DS was on antibiotics for nearly two years, and we had no yeast overgrowth issues by using three probiotic and "cleaning" supplements: a mixed strain probiotic by Renew Life, a sachromyces boulardi (sach supplement by Jarrow (same probiotic strain as in Florastor, but less expensive), and bentonite clay.
 
The mixed-strain probiotic we gave every day, as we did with the sach b. Sach b is, like candida, a yeast, but a beneficial one that helps crowd out candida; it's also impervious to antibiotics, so you can dose simultaneously if you need to without giving up too much of the probiotic to die-off. We would use the bentonite clay once per week or so to help "sweep out" the die-off in the gut.
 
Hope things go well for here on out!

Dr. Swedo said that our children will outgrow PANDAS. I asked her when, and she said by their early 20's. From the message boards, it seems as though some outgrow it sooner than that. With PANS, they do not know for sure, but I feel like my daughter after 3 years is slowly getting better from PANS. What we as parents have to do is minimize the "collateral damage" from the disease by providing our children with the best care possible. Minimize exposure to strep and other serious illnesses, strengthen their immune system by raising their vitamin D levels and giving high quality probiotics. Supplement with high quality Omega 3's to reduce inflammation. Find a great CBT therapist. Read up on the illness and attend the conferences to stay educated. New discoveries are constantly being made that can help us to get our children better.
 
Most of all, love them and be kind and patient

I'd have the doc give her a good week or 2 weeks on zithro even a double dose of zithro before moving on to chasing parasites. A lot of kids it's either Zithro or Augmentin. A small number take both.
 
Also high dose inositol protocol might be of benefit esp. for those feelings of 'afraid all the time" poor kid we have been there
google inositol in all the acn forums to see the range of experiences