Jaysmom

Since your DS is +/+, his body is struggling to convert any form of folic acid or folinic acid into methylfolate (+/+ means he's probably only converting about 10% of the raw stuff into the end product of methylfolate).
 
You need to introduce both methylfolate and some form of B12 (cobalamin) - since these work as co-factors and you need both as part of your supplement plan. You want to avoid synthetic folate (found in cereals and other fortified foods and most multivitamins).
 
I'd start with this product http://www.holisticheal.com/methyl-folate.html
because it's a liquid and each drop is 67mcg. So you can build up slowly and drop down quickly while you tweak dosing. Later, you can switch to a tablet if you find he does well on a 400mcg or 800mcg dose. If he needs more than that, you can get a prescription for Deplin, which comes in 5mg and 10mg doses. But for now, start with 1-2 drops/day (I put mine into a small dixie up of water). Do this for a few days.
 
Then add a sublingual B12 tablet. Any B12 that's swallowed doesn't make it into the blood stream - most of it doesn't seem to make it past the stomach acid. It's estimated that about 10% of a sublingual will get into your blood stream. So dissolving a tablet of 3000mcg of cobalamin will get roughly 300mcg into the blood stream. There are 4 forms of B12 - cyanocobalamin, which is the least desirable form and not very useful to the body. There's adenosylcobalamin and hydroxycobalamin -which is tolerated by most people. And there's methylcobalamin, which is good for people who are true undermethylators really need methyl groups. Which form is best for your son is going to be a matter of trial and error. If you happen to know the status of his COMT gene, this can help. But if you don't know it, I'd start with either 2000-3000 mcg of adeno or hydroxycobalamin. I'd start with one of these
https://www.seekinghealth.com/adeno-b12-60-lozenges
or https://www.seekinghealth.com/hydroxo-b12-60-lozengesor
https://www.seekinghealth.com/hydrox-adeno-b12-60-lozenges
 
Later, you can try methylcobalamin or different doses of any of the above to see if you can improve results. But these suggestions can get you started.
 
Start with a low dose of methylfolate (maybe 150-200mcg) and a few days later, add in a sublingual form of B12. Do this for a week. If you see nothing, or if you see improvement to mood, increase the dose of methylfolate to maybe 300-400mcg for a week, and assuming you still see improvements, keep increasing dose until you start to see "bad" mood stuff creep back in. Then, if you start to see mood swings or mania, stop both the methylfolate and B12 for a few days to let things "drain". Then re-start at the last dose where things were good.
 
While you're tweaking dosing, if you "overdose" on the methylfolate, you can give 100mg of niacinamide (vitamin B3) and this will quickly (20-30 min) soak up the extra methyl groups. Niacinamide is also useful any time you get rages. https://www.amazon.com/Source-Naturals-Niacinamide-Vitamin-Tablets/dp/B00020I7IU/ref=sr_1_2_a_it?ie=UTF8&qid=1489360057&sr=8-2&keywords=source+naturals+niacinamide
 
Hope this helps

I ended up having testing done with Australian Biologics for lyme and mycoplasma PCR, and also have sent blood to Galaxy Diagnostics for Bart and co-infections. I thought it would be a good idea to have some testing done so that I would at least know what to target with the antibiotics. Im waiting now for the results, but in the meantime thought I would start slow with clarithromycin, and plan to start rifampin in 2 weeks. I am suspecting Bart, so focusing treatment on that mostly for now.

I agree, it is a guessing game. Its trial and error. If your able to see an llmd that seems like the best and only option. Need to see someone with experience. Otherwise it may not work, and just wasting money and time.
Doxy combined with something else would be recommended. As i have ocd, my ND seems to like combining things with augmentin, as augmentin appears to help ocd symptoms. But best to see what your Dr says.
My next step I think is going to be rifampin and mino combined starting from next week. But need to make sure my liver enzymes come back to normal first. Apperantly I had a rare reaction to one of the antibiotics.

Although in this article they mention improved socialization, even DD herself noticed a decrease in ticcing and other PANS symptoms during a fever.
 
http://www.ageofautism.com/2016/07/immune-system-autism.html#more
 
The researchers found that without interferon gamma, signals in a brain region called the prefrontal cortex run rampant, and mice tend to be asocial. The prefrontal cortex is involved in social behavior, and is thought to be overactive in some people with autism. “We show that an immune molecule directly controls brain circuits through neurons,” Kipnis says.
...This suggests that interferon gamma normally dampens brain signals in this region — and that it affects social behavior. Replenishing the spinal fluid of the mice with interferon gamma is enough to restore social behavior in the mice...The findings may explain the observation that some children with autism seem to become more sociable when they have a fever, Kipnis says. Elevated levels of molecules such as interferon gamma accompany fevers.
 
In that same article, I posted two studies that seemed related to each other, and to my daughter. The first one showed "EtHg [THIMEROSAL] decreases IFN-gamma release". Further reading showed that IFN-gamma has antiviral activity and also important immunoregulatory functions. It is a potent activator of macrophages, has antiproliferative effects on transformed cells and it can potentiate the antiviral and antitumor effects of the type I interferons." Another study I have since discovered from the same year Megan was born, 1993, details this same phenomenon: "mercury interferes with T cell IFN-gamma production by affecting the intracellular availability of GSH."
 
A comment below the article written by "Tim" is interesting:
 
There are a number of herbs that increase IFN-gamma, such as guduci (which curiously enough was highly recommended by a commenter here to heal ADD).
Stephen Buhner recommends using adaptogens instead of just trying to increase INF-gamma, because chronically high IFN-gamma causes its own problems. So his suggestion (in his book Healing Lyme) is to use Withania Somnifera (Ashwaghanda), Rhodiola, Licorice, Scutellaria Baicalensis (Chinese skullcap), and Astragalus. These all raise low levels and lower high levels. Give Ashwaghanda at night; Licorice in the morning; the others 3 or 4 times per day. Licorice should only be used short-term, the others can be used indefinitely.

We use astragalus 500 mg 3x weekly.
 
 
 

There are two things you may want to look into - the first is methylation - a chemical process the body uses to turn raw nutrients (vitamins and minerals) into energy and neurotransmitters. Finding my kids' genetic roadblocks and adjusting supplements (B vitamins and zinc/copper in their cases) made huge improvements in mood regulation regardless of infection or good health. There are lots of posts and links (many from me) on the forum on the subject.
 
The second is using herbs in place of antibiotics. Stephen Buhner is an herbalist who's written many books on using herbal antibiotics and herbal antivirals - especially for treating chronic infections. My DD is allergic to many antibiotics so we've been using herbs with some really positive results - and herbs dont damage the gut the way pharmaceutical antibiotics do. I defer to RowingMom as the resident herbal expert but Alchornea has been an awesome herb for us.

DD's treatment started in June 2011, by Nov she was still dealing with these symptoms (levels from 1-10, 10 being worse). When we began treatment, each symptom was at a level of 4 or 5.
 
Shin/forearm pain 5; Headache (pick-like) 3; Stomach pain/nausea 1; Motor/vocal tics 5; Sore throat 1; Emotional lability 4; Sound sensitivity 4; Concentration (poor) 4; Foot (sole) pain 2; Tingling extremeties 0; Joint pain 0; Fatigue 4; Hot flashes/chills 0; Light sensitivity 3; Night sweats 0; Neck pain (base of skull) 0; Palpitations 0; Dizziness 0; Panic attacks 0; Night waking 0; Incontinence 0.
 
Any increase in symptoms you see is likely due to herxing. Fortunately OCD wasn't one of DD's problems, other than she would draw the same picture over and over and over, in school while she was supposed to be working, in school when she was supposed to be eating lunch, at home when she was supposed to be doing homework, etc.
 
Because her symptoms started pretty much at birth, she was already accommodated (IEP) with redirection and a smaller work load at school. Also, in 2011, she was in grade 5 so not as much was expected. Nothing that I couldn't teach her at home beforehand so she would know what to expect the next day at school.
 
She even had to be redirected to eat lunch; had to go the remedial class, or she would draw and forget to eat.
 
Seriously, I spent so much time at school, talking to the teacher, cleaning out her desk etc. because she was totally incapable.
 
She spent most of her spare time by herself and didn't bother interacting with other children. After the 2 years it took her to improve to a point where no one could notice that she still had symptoms, we put her in a different school and they accepted her there.
 
It was a bit brutal, but you do what you have to do. Know that if you keep at it, you will find the answer.
 
I'm glad you have found a responsive Dr who understands that you can't push too hard. Now you know not to try that again.

So yesterday you increased rifampin and today introduced flagyl?
 
The cyst busters flagyl and tindamax both cause significant die-off, as can rifampin.
 
Poor kid, I'm sorry.
 
If I was you I would do one for a while before introducing the next. There is always an initial die-off when increasing dosages or starting new abx. You need to wait until her body has processed the first load of toxins before adding a second.
 
Don't push so hard killing bacteria. It's easier on kids if you go slow.

Thank you so much, you are giving me shivers! You must be so very, very proud of her. And to have helped her the way you have, you deserve your own award. So many suffering children out there will never know what they are dealing with - your daughter is lucky to have you as her mother.
 
We too have reached the point in healing that you have, although DD remains on low dose herbal treatment for her infections.
 
She is one of the top students in her class, although not 95+ (I'm not sure that's possible if she inherited any of her intelligence from me , her father is pretty smart though.). Her principal called the other day to say what a wonderful child DD is; respectful, happy, caring, studious - that she was a joy to have at school. I truly believe that everything our children have been forced to endure forges them into incredible, empathic individuals when they emerge on the other side.
 
Isn't it wonderful to see just what our children are capable of when not dealing with the effects of brain-impacting infections!

Very sad for you and your son dear michellb
What is the PANS trigger of your son? Did you check for Lyme and co infection through a safe lab? ( like Igenex) Seems to have some bacteria from tick bite
PEX take out an amount of that but that returns
Before Rituxin check for Lyme and co infection
I don't know what the Pandas dr say that Lyme and co infection can be initial trigger for PANDAS and or they don't check for that or when they check they sent you in Lab with false negatives response

I have come to rely on intuition. I know it sounds silly, but in my heart I just know what is really right or really wrong. Don't completely dismiss these feelings.

We have never tested DD13 for metals, but she was quite electrosensitive with a significant increase of symptoms especially ticcing and shin pain/headache when exposed to EMFs in malls, library, museums, school etc. It makes sense to me that tissue metal burden would increase electrosensitivity.
 
I too was nervous about IV chelation, and apparently our LLMD was as well because she never did suggest it for DD. I saw others in her office undergoing the procedure, but none were children.
 
When a bit of motor ticcing was the last symptom to resolve after undertaking Buhner's bart/babs protocols, I decided to try a more natural chelation. We use 4 drops of organic cilantro tincture (Flower Fairy Herbs) 3x daily (8am, 3pm, 9pm). 2 hours after the first 2 doses (at 10am and 5pm), I dose DD with 1/2 tbsp. diatomaceous earth. She also takes psyllium with the second dose of DE (to keep everything moving along).
 
The original protocol I found used pascalite clay. But being concerned about the potential amount of aluminum in the pascalite and not knowing the state of DD's intestinal lining (leaky gut) I opted for DE.
 
http://www.drdavidwilliams.com/cilantro-clay-for-detoxification/
 
The decline in DD's motor ticcing was noticeable within 2 days. We have kept up the regimen and a mouth stretching tic only temporarily returned for a month after dental extractions. They have resolved again since her teeth have shifted.
 
DD's electrosensitibity has also significantly resolved, as has my own ( I am dosing myself as well). She can no longer tell when she is an area with WIFI, although we try hard to keep exposure at a minimum at home (wired computers and phones, cell phones on airplane mode most of the time, circuits off in bedrooms at night).
 
One caution. Thinking that more would be better, I initially increased cilantro dosage to 10 drops 3x daily. Yeast infection was the almost immediate result. Apparently the body will allow yeast to bloom in the gut if there is a large release of metal into the intestines. The yeast helps to sequester the metal and keeps it from being reabsorbed. More is not better here.