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


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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.

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 from 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

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Wow..... You have a lot going on. No wonder you are tired. So glad you are starting to figure things out a bit. I can't comment on your questions but you have provided a lot of great info. When I get some time I will actually sit down and try to comprehend some of it. My son is a ticker as well, we are all dealing with the flu right now, so just waiting to see how we pull through all of this first. Thank you for all the info. I know what you mean when you say you are afraid to keep giving the abx, but also afraid to stop. That has been a constant thought of mine as well.

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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.

Edited by JuliaFaith
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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..!!!!!

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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.

Edited by formedbrds
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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)

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