I hope I don't regret posting this!?!

[Fixit]

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

Edited November 7, 2012 by Fixit

[Fixit]

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!

[lismom]

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.

[Fixit]

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.

[JuliaFaith]

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!

[Fixit]

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)

[Fixit]

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!

Edited November 8, 2012 by Fixit