Fixit

November 26, 2012

I am wondering if anyone had experiences with Dr. Neubrander (the one, as I understand, who was the first to use methyl-B12 for Autisim)? Hi web-site lists PANADAs as one of the conditions he treats.

http://www.drneubrander.com/PANDAS.php

We are patients of Scott Smith PA...out of same office.

Scott is great, highly versed, always learning, helps you understand, and wonderful bedside manner.

We have not used Dr N.

November 23, 2012

can vitamin c make tics worse?

make sure not rose hips...stimulating

buffered or estered can be stimulating.

November 23, 2012

Does anyone know if this is related to anything like lyme or one of the co-infections? I know that low wbc, enlarged spleen are...which DS had several years ago...but now he's been fighting problems with his adrenals being low. His numbers are at the very low end of normal, and his LLMD put him on hydrocortosone. They went up for a few weeks, but now the numbers are down again. He keeps having his left leg turn out (not happening now, but definitely has happened,) which his chiropractor said was definitely from the adrenals. He has also been fighting something off (said everyone at school is sick, and hasn't been feeling well for about the past month.) MycoP IGG just came back 100 points higher than last time they were checked, and I told the dr. that I wasn't surprised, because I feel like I have been getting it again for the past month (I'm the one who had the high IgM.)

So, what does it mean if the adrenals are at the very low end of normal?

Thanks.

Alot of my investigation for ds seems to be circular and currently has brought me back to adreanals.

though ds' Pupils seemed to become regulated once i started his diet, they are actually quite dialated most of the time.

THis is a link i posted some time ago.

Seems very poinient as we had a marvelous visit with a new dr very close close to me (to do alcat, and needed someone guidance on figuring out diet and food allergy/extreme sensitivity)and he is the first one to mention/even notice that his eyes are like saucepans, without me asking about it/first.

I am very concerned about this adrenal fitigue. Not a light or easy issue.

It may be part of ds continual slumped posture, disinterest, thyroid, extreme allergies, food issues.

I hope this gives someone a step in the right direction.

http://www.suffernomore.com/Pain/AdrenalFatigue.htm

November 18, 2012

Odd that you posted these 3.

i have 3 pandas boys...ticcers...down on the list of concerns(because not AS hard to deal with(and so subtle), the tics are so overwhelming, but related. As you treat one condition sometimes the other subsides too.

DS12 vision

DS10 noise

DS5 skin

younger 2 in remission...oldest doing very well currently..(we need a knock on wood icon)(and a boot to the behind icon too)

November 15, 2012

That's fantastic!

DITTO!!!!!!

November 14, 2012

Well, here I am again. I am glad I journal all of this, or I would confuse myself. A review - 7 yo ds, Seth, was diagnosed by Dr. K with PANDAS about a month ago. He recommended 14 days of Aug and a 5 day steroid burst starting the 8th day. I had posted about Seth having an exacerbation on the second day of Augmentin. He seemed to improve some from that about the sixth day in. Then, we started the burst, and again he got worse again with only repeat whispering. We saw zero signs of improvement following steroids. He basically remained "baseline" worse throughout the course of the meds. We started the 14 day observation last Friday. Until yesterday after picking him up from school, he remained worse than before starting the meds including some new extreme behavior at his sister's birthday party. Yesterday, he still had some of the repeat whispering but nothing like since the exacerbation and perhaps even a little less than before beginning the meds. He was much better than from just that morning. Same today thus far. That would be five days past the last day of Augmentin and seven days past the last day of steroids. Is it possible that the meds are just now taking effect? Thank you all again so much. Our problems are nowhere near as extreme as some of these clinical cases I have read, but man this whole process can leave the parents feeling so alone especially when you are miles and miles from a knowledgeable physician.

Could be either.

Or both.

Maybe saturations point has been attiained with abx to fight infection and/or/antinflammatory response.

I have had that happen with just abx and happen with just steroids.

November 13, 2012

What a wonderful story of healing!

Thanks for coming back and updating with the good news!

November 9, 2012

HERE IS MY QUESTION(S)

MOST IMPORTANT

This is ds 2nd 10day round of Val….

I am afraid to stop and afraid to continue.

Should I take a week, 10days, 2 weeks off and then continue with another round?

I have 2, 10day refills left.

This is what I was told by a doctor: Stay on valacyclovir (valtrex) for 3 months then switch to valcyte for 3 months because viruses mutate around the antiviral. Check titers at the end of the 6 months. I asked about taking a break one day a week; the answer was no.

Thanks

I was just skipped this mornings dose. but continued tonight upon reading this post.

It lead me to look at this a little closer.

Found this interesting site.

oddly it looks like the same dr treats hhv6 and thyoid issues...a good read on the thyroid thing.

http://www.drpodell.org/alternative_thyroid_treatments.shtml

http://www.drpodell.org/yeast-infection-treatments.shtml

http://www.drpodell.org/chronic-fatigue-syndrome-hhv6.shtml

I just asked ds if he feels like he has more energy.(not that he could run a marathon, but does he feel less sluggish)

DS says he feels like he wants to do stuff now. He was always just slumped over. Never sat upright. Rested head on table at dinner. Looked/s like poor muscle tone. Now he seems more aware/active/engaged within the moment even if its' just by posture.(never seemed like depression, just poor muscle tone or tired)

November 8, 2012

For those who have treated for parasites, what made you decide to do this? What are the most common symptoms?

Can we just do a preventative treatment plan like we do for our pets, or do we need to do specific tests and treat accordingly?

I deworm my farm animals and pets every spring and fall. So I got to wondering why I don't deworm the humans too. My 3 boys play with the animals, play in the dirt, etc. So it makes sense they would have the same parasites as our non-human residents, right?

Every time we use Scram(the new name) by healthforce, we have only had postivie results.

vEry gentle, but alot of pills.

for ds12 i go up to 8 pills not 10 for the 18 days.

but if we do the product again..i might go 10..we will see.. he is not quite 110lbs.

it also detoxes and treats candida

(so i always question is it the detox, candida, worms...or all of the above?)

November 8, 2012

Hello again Fixit-just left you a message on PANS site now am here again. Sorry.

With the thyroid tests: TSH/T4F/T3Free; the dr. is looking for all of these to be below '1'. TSH was creeping up again recently so I increased dosage a bit and at last visit, dr. said that is exactly what she would have done.

We are also on GF diet.

FYI - You are an amazing mom!

Just replied to you on other board.

I am glad you dr is on board with these numbers.

My dr wants them smack in the middle..with only .25 variance either side.

THANK you for such a wonderful compliment.

As well as you and so many parents here!!!!!

I have to say we do have gl about 2x a week...but whole grain,,,no enriched/or bleached.

Also per other reply to you...

this thread has not done DS in...he is still holding strong as he came in the door and all eveing!!!!

he is also less slouchy and his eyes are no longer dialted...(i thought they were a bit the other day...and he was tudy then...but both have remitted)

oh.i may have to pick your brain on under 1 thing...

i have heard of that too!

November 8, 2012

Hello again Fixit-just left you a message on PANS site now am here again. Sorry.

With the thyroid tests: TSH/T4F/T3Free; the dr. is looking for all of these to be below '1'. TSH was creeping up again recently so I increased dosage a bit and at last visit, dr. said that is exactly what she would have done.

We are also on GF diet.

FYI - You are an amazing mom!

Just replied to you on other board.

I am glad you dr is on board with these numbers.

My dr wants them smack in the middle..with only .25 variance either side.

THANK you for such a wonderful compliment.

As well as you and so many parents here!!!!!

I have to say we do have gl about 2x a week...but whole grain,,,no enriched/or bleached.

Also per other reply to you...

this thread has not done DS in...he is still holding strong as he came in the door and all eveing!!!!

he is also less slouchy and his eyes are no longer dialted...(i thought they were a bit the other day...and he was tudy then...but both have remitted)

November 8, 2012

Wow! Did you figure all this out on your own? Very impressive!

My son has been and is on a similar road. He has been thru at least 3 parasite protocols in the last 2 yrs. of treatment. It seems every time son starts biting nails, dr. puts him on another parasite treatment. The end of son's last parasite treatment ended with 4 weeks on Alinia last month.

Whenever my son is on abx (not Alinia) she always puts him on 'Matrix Minerals' from bioPure which sounds similar to your approach. This last time (at current flair) she had him sip the following every day (still on it):

1 cup water

Matrix Electrolytes

Matrix Minerals

M-water

UNDA 243 (I think this is for cholestrol...)

Galactose powder (methylation help)

In the past she just had him take the minerals in water.

After 1 1/2 yrs. of trying Valtrex/Artemisinin etc. for HHV-6 virus with no improvement showing on blood work, I decided to try Valcyte (stops virus from replicating). Son was on it for about 5 months and then tested that he did not need it any more. He was taken off of it immediately. Had 6 weeks of 'starting to feel better' for the first time in 2 yrs (from flu-like symptoms). He then caught a chest infection and sent him into a PANS flair and has felt like he did before the Valcyte once again for the past 3 months. I wondered if the flair had not happened if he would have continued to feel better, but he just told me today that before the flair he had started to feel worse but did not want it to be true so did not say anything. Your son may have a different experience, for sure, and I was not sure if you would want to know all this but it seems better to know than not.

We are waiting for HHV-6 results back any day and Vit. D to see if son is ready to start GcMAF injections as I believe this is his only option (besides IVIG).

His current protocol is similar to your sons right now too:

Chlorella/Fermented Cod Liver Oil (good for digestion)

Thyroid meds for Hypothyroidism (130 mg a day)

MILA, vit. A, Vit. D, brazil nuts (selenium)

Ketotifen (gut repair from flair)

Probiotics

Liposomal for maintenance:

grapefruit juice

Lipo-Health (autoimmune/methylation)

Artemsinin (400 mg)(anti-viral; anti-bacterial etc.)

Mimosa Pudica (anti-parasite)

Curcusyn (anti-inflammatory - open capsules and add) TGF-beta 1 still high (s/b 2,000 but son's is 4,500) so trying to get reduced before GcMAF injections.

He drinks 1/2 before breakfast and 1/2 before dinner.

Best wishes on continued improvements! Thank you for the great articles!

P.S. Forgot to mention that he also does a nebulizer with iodine/garlic every night before bed so I found your iodine comment interesting as well.

Yes...it was me!!!!! i can't believe it either...

i did use info from alot of parents/threads here, and friends of parents, to see what made sense...

what their results might be form things they are doing like sal=free diets...kpu responses...

then there is other information i had, but didn't know where to apply it.(like k2, upping dosages untill body fills its thirst then backing off)

When the kids are so bad...and you add one thing..maybe one thing they definitly need...you can't see a difference because of so much interferance from other things that are knocked down.

i think cleaning the diet..really cleaned the slate. i can really see if something is affecting him.

we use samento, noni, apo=hepa.

just started mimosa.

the thing with our bodies is...you knock one domino over the the whole thing comes down.

but you pick one up, then you have to manually pick up the other,,,then one falls back down, you pick it up, then try to grap another domino on the way up...much more difficult and trying to keep it in balance is hard.

Starting to understand angonist/antagnost relationships a bit has i pull through this.

http://www.fitday.com/fitness-articles/nutrition/vitamins-minerals/5-micronutrients-and-where-to-find-them.html#b

even though there is no kpu problem..i think the b6(p5p)with zinc and mang will pull more copper....it's already low side...so i will supp with 2mg of cu a week and see how we go. I believe even llm is suppig with cu at this point.

also i don't know where ds hhv6 was prior to this...did his load come down since we were on artemisin for several months prior to draw...and maybe if his other loads come/came down then he cant fight other stuff better.

llmd and i believe he has some yeast going on...i mean it would be crazy if he weren't.

using candicid forte...3x daily....in combo with a less wheat diet.

i wonder if i stopped this if we would get 100..alot of salicylates in here...oregano, rosemary, ginger,(but i think thyroid is better!)

note molyb is supposed to help with that too...caution not to od.

ds responds really well to healthforce products...i believe they had to change to name to SCRAM.

per some lymers and autisic parents, you need to hit parasites for many months as the populate different parts of your body.

so will give break from alnia....(oh maybe that helped the hhv6/other as it is supposed to be anit viral too)..and do scram next round..then back to alinia...then back to scram....hope to be done.

But that scarm product also helps with detox and yeast...so it really helps his system.

garlic is one of the only herbs allowed on diet...so i use it alot...good for yeast, glutithione.

speaking of glutithione....after showers/baths have kids do a cold water rinse. The shock makes the body produce its own glutithione. So that exlpains the polar bear club and the jacuzzi, cold water thing.

Ds is doing it and i am doing it. Even if you just lower the water to where it is much cooler will help.

i give 100bill probiotics nightly, rotating varieties, no sac, no fos's...has to do with amines, phenols.

one day i susspect they will not be an issue.(though i can't say he has an issue with them....just being safe)

I always hope i can help one more person or get one more piece of puzzle for someone.(before i run away and never look back!!!!)

Julia...your son's dose for thryoid seems pretty high.

i would definietly look into one of the drs listed on that site.

also might need to combo thyroid meds, untll you figure things out.

if his cholesertol is high that could be due to thyroid....(not just genetic or lymes)

PS...this thread hasn't jinxed ds yet...still looking good, home from school!!!!

oh he is a little less slouchy, eyes are no longer dialated..!!!!!

November 7, 2012

What your doing is so diligent and well thought out. So glad for the results. I might take some of your info and incorporate. Sons tics are still stuborn. One question though, how can you be sure whether some of the tic lessening is not from the discontinuing of mepron, allinia and etc. I know when I stop some stuff for treating bartonella his tics get better. Dont mean to be a downer just asking.

Oh, I appreciate your question.

That is kind of a part of my question.

After stopping the abxs,,is it possible to rebound to a better place, than prior to beginning of abx(when thing were so bad while on them)?

But I did stop the sals a day prior to stopping the abx.

The night of stopping the 2 abx’s he seemed better

Then better the next day…and we have just continued from there.

( I thought for sure it was a true kpu problem)

I don’t know if ds’ journey is any 1 part.

I think all things become/became super sensitized at some point

I think myco p was the final trigger to this terrible episode.

And I cannot believe that I NEVER checked his hhv6 until 4 weeks ago?????

GO check your lab lists people!!!

llmd still thinks babesia at play...maybe that's why not 100%?

maybe thryoid not in balance yet?

probably hhv6 and myco p have not come all the way down either?

For ds his mouth would itch with eating certain fruits…or certain types of the same fruit, or the same fruit that one day is bad, one day is good?

I asked every neuro, immune, ped, llmd about this and they just said,

Will outgrow,

Don’t eat that,

Don’t eat it in a particular season, only in fall, winter????

So I thought there has got to be something to it.

If I can get it past his lips w/o itching ,,,what is it doing internally, what is happening that I can’t see.

But this diet is no way to live and he is a growing 12yr old, who is almost 5’8.

What is causing this?

His allergies and sal issue are worse than ever.

One cool story.

http://www.naturalthyroidchoices.com/MyKids.html

on this site you can find a list of thyroid drs by state.

http://www.thyroid-info.com/topdrs/index.htm

I was happy to see that my dr was already on here.

They believe the thyroid should be in the middle…not the fringes, or out at all.

Ds used to be out…but last test he was just inside.(I had lowered the dose on my own…bad thing)

Going to call my dr to up his dose and resched, a blood draw in a couple months.

Oh forgot to mention that about 10 days ago I started to add l-glutaimine.

Not nearly what sf uses.

Just about 1/32 that’s right 1/32 of a tsp 3 x day.

I’m hoping the dose is so small it’s getting absorbed in the intestins before it converts to glutamate in the brain.

You can get the spoons at William Sonoma or other kitchen stores…a pinch, a dash, a smidge etc.

Low and slow..

My goal is to get ALL or most of the foods a back in without overloading the system..but I hope the key is this thyroid…and then to manage it with supplements and a good diet.

aNd hopefully he can have a cheat day for holidays and such.

For thyroid per my dr,,,rye , millet,quinoa, aramyth and such are ok….just not “wheat”….but I am still limiting that.

November 7, 2012

PS meant to mention..i did do alinia again for 3 weeks covering the full moon.

Next full moon I might do the other parasite cleanse by healthforce again, which Is a 3 week course.

Or I might skip one cycle …so tired!

November 7, 2012

PS meant to mention..i did do alinia again for 3 weeks covering the full moon.

Next full moon I might do the other parasite cleanse by healthforce again, which Is a 3 week course.

Or I might skip one cycle …so tired!

November 7, 2012

Things are going Very well.

I almost don’t want to say anything..(but we are -95-98%(if we blip with allergy shot next week I will need some hand holding.!!!!!!!)

Here is brief story if possible.

Ds is 9-9.5 on tic scale the month of Sept…this is umpteenth time he is like this…(thinking his life will be sh^#t)

I am crying my eyes out as some of you know!

Sunday 9/24…stop all salicylates…stay on abx’s but take kpu test

Monday 9/25 stop alinia, mepron, diflucan(continue herbs, cefdinar, Up zith to 500)

Start giving 1 core and ½ k2

By evening tics down to 6-7

9/26 realize I need to watch anything going in mouth…ie toothpaste

Started adding more zinc..

Friday 9/28 -9/29…things are down to a 5 or better.

Sunday 9/30..add 50mg selenium

Rotating in other forms of k2 ie mk4 vs mk7(only 2x a week)

Added 2 drop iodine a couple days earlier.

Ps..detoxing at least 1x daily..ie charcoal or drawing formula with zeolite.

10/1 heading into the 4 range..

We had a few infractions during week, a couple of blips ..but going into 3 range by

10/6 Saturday and up core to 2 on this day

10/9ish already heading into 2 range ,stop cefdinir..add magnesium taurate..

10/13 Saturday, catching food infractions..Decide to stop Core and supplement individually as some ingredients might be stimulatory, some doses might be too high..adding key items eliminating others.(partially not sure how to dose)

Some time in here, as I investigate Sal issue…I’ve come to realize how KEY the thyroid is. Possibly causing SAL issue…I had taken ds off thyroid med for a month to see where he was and at blood draw was at high end of normal. Started adding back and every 2 weeks upping dose..just getting to 75mcg ish this week(11/7/12).

I will be posting a load of some interesting articles, leads that have put me where I am today on thinking.

Please read all way through blogs, articles, studies, they pull you in different directions in same article but might be key for your kid.

10/14-10/19

Adj to individual supps. Get allergy shot 10/17/12. Trying to really watch gluten as my thyroid dr told me yrs ago how it effects thyroid.(even just for me). Trying to rotate diet with allowed foods. And trying to do no gluten days..eating clean and starving!!!! Continue blipping.

10/20/12 start valacyclovir as never realize ds hhv6 is crazy high. As per my post around this time..ds got so hyper, wrestling his younger brothers every 3 seconds….

10/24/12..we have gone on/off ldn a couple times(no issue either way)..we tried going off of his 2mg dose this day..he was fine, but just a little more tudy(he’s a teen now), than I am used to and I didn’t feel like dealing..so added back 1 mg around 10/27/12..(I think it helped)(maybe all teens should be on 1 mg of LDN )

Found out NO KPU problem..but I think there are some key elements in there that are good for ticcers and allergies and thyroid.

Also changed to artemsisnin liposomal…but fear dose is too low..only 1 pill bid..total 100mg daily?

By 10/27/12….I think he might be better than the week before!!!!!??? Below 2 ???? 1ish…could it be!!!

10/28-11/3…I up magtuarate, up molyb to 75mcg, I up thyroid med

By 11/3/12 Things are so good I thought I would be posting we are 100%

Just looked closer at ds copper….in range but LOW(87—189)(ds 89)..these tests were all prior to starting any supps >

There have been no supps for 4-6 months.

11/6/12 Just gave 1mg cu and gave other ½ today.

Will do this only 1x weekly as it is only eliminated 10% over 72hrs…if I got that right.

Copper also needed to maintain thyroid.

NOW..mind you I am still on eggshells…and will forever be…..and afraid every time I test a food that might have sals…but hoping once thyroid is lifted and supported, the issue will be mute(or at least limited)

I think all his baby teeth are out too!!!

HERE IS MY QUESTION(S)

MOST IMPORTANT

This is ds 2nd 10day round of Val….

I am afraid to stop and afraid to continue.

Should I take a week, 10days, 2 weeks off and then continue with another round?

I have 2, 10day refills left.

I think that the sal diet has been key!

I think thyroid is the master key!(think of it as a form of methylation)

I think that I got an extra boost and the last push from the VAL.

Anyone think that I got a rebound by stopping alinia and mepron…

I read couple posts that that said…they were worse on abxs but once stopped, they were better than before starting the particular abx?

I am going for the 100%

Great article on hhv6 and artemisinin

http://naturheilpraxis-hollmann.de/HHV-6_Artesunate.pdf

http://adhd-treatment-options.blogspot.com/2009/04/10-ways-zinc-can-combat-adhd.html

http://www.healing-arts.org/children/ADHD/nutritional.htm

manganese…read towards bottom (also talks about raging kids)

http://immortalhair.forumandco.com/t3186-manganese-deficiency-and-hair-loss

http://www.ncbi.nlm.nih.gov/pubmed/20415606

http://www.ncbi.nlm.nih.gov/pubmed/12796527

manganese…toward bottom talks about healing tardives…

http://www.uofmhealth.org/health-library/hn-2881000#hn-2881000-uses

Thyroid…

Great stuff on Copper, read all the way to bottom…some great research

http://www.health2us.com/zn_cu.htm

http://www.anyvitamins.com/copper-info.htm

long thread…continue on to 2nd page as well…

talks of sal issue…going into poor thyroid..and then vitamins

http://curezone.com/forums/am.asp?i=1755137

viruses, thyroid

http://www.virologyj.com/content/6/1/5

thyroid, amines……also note threads on the right…especially one on adhd and thyroid.

http://autoimmunethyroid.wordpress.com/2010/01/04/i-am-no-longer-sensitive-to-amines/

http://autoimmunethyroid.wordpress.com/2009/08/30/adhd-and-hypothyroidism/

also trying to keep selenium and iodine in balance..

moylbdenium…..candida…

http://www.arthritistrust.org/Articles/Molybdenum%20for%20Candida%20albicans%20Patients.pdf

molyb…chrones…other

http://lpi.oregonstate.edu/infocenter/minerals/molybdenum/

http://www.livestrong.com/article/361012-what-are-the-health-benefits-of-molybdenum/

food allergies..sensitveiyyy.back to b6 zinc

http://www.foodmatters.tv/articles-1/food-allergies-is-there-a-natural-cure

November 7, 2012

Things are going Very well.

I almost don’t want to say anything..(but we are -95-98%(if we blip with allergy shot next week I will need some hand holding.!!!!!!!)

Here is brief story if that is possible.

Ds is 9-9.5 on tic scale the month of Sept…this is umpteenth time he is like this…(thinking his life will be sh^#t)cyring my eyes out.