Re: Helpful hints, please - For

[Guest guest]

Hi ,

No problem at all. Here's my son's story. I will try to keep it as short as

possible

When my husband and I lived in CA, we didn't have ANY problems whatsoever.

When we moved to OR into an apartment where I think there was mold inside and

outside, all hell broke loose for all of us. I developed severe cough, phlegm in

my throat in the mornings, heartburn and couldn't handle fats very well. When my

son was 1 week old, he developed high fever, rashes etc so we started cleaning

the apartment over and over (unfortunately with lysol etc)and would clean the

black mold that grew at the corner of the windows which we could never eradicate

My son at 4 months of age (two weeks after his vaccines), developed high fever

and it would not come down and was given antibiotics assuming it was bacterial

and still the fever did not come down and he started developing Kawasaki

Symptoms. He turned red with conjuctivitis, rashes, and started throwing up

(projectile vomiting). This went on for three days and he slowly started

recovering but would start to gag at foods and would have projectile vomiting

4-5 times a day for the next two years ! They did the tests for Acid Reflux and

it was all negative. The Gastro would blame me saying I was forcing my son to

eat and that he was too independent for his age and I should just give the food

to him at 8 months

Developmentally, my son was doing really well, in fact he was even more

advanced than most 1 year olds as he could do simple puzzles and was extremely

interactive and would draw shapes on his magnadoodle and had about 50 words. The

ped said this was unusual. Anyway, we changed the carpet (as he used to throw

up a lot) when he was 12 months of age and he stopped trying to walk and put it

off for a month and became extremely irritable . To confuse things more, he was

given his Varicella shot at this time and he did receive his MMR and other ones

at 15 months of age by which time he lost all of the 50 odd words that he had

for which the ped said some kids just put off talking

My son became one hyper, irritable, unfocused boy losing all language after

this. Now, he got a diagnosis MSDD (Multi System Developmental Delay) from a

behavioral pediatrician who said what my son had was not autism but some sort of

developmental delay. We did all the biomed treatments from GFCF diet to

chelation to supplements, you name it. Though we saw subtle changes, nothing

dramatic and the changes wouldn't last either. He even got worse on some of the

treatments. The only biomed treatment that we saw dramatic improvement ( but

very temporary) with was the use of bethanechol which is synthetic

acetylcholine. If he was on empty stomach and he took this, he would become

totally connected and would start speaking clearly. But the effect would only

last for an hour or so. He even started sleeping thru the night without

melatonin ! I recently read on pubmed that acetylcholine increases Alpha MSH !!!

I am sure this was the reason he benefitted from bethanechol. Unfortunately, he

stopped responding to it when we started chelation Even now, he does not

respond to it anymore. My guess is that since chelation lowers neutrophils

besides other things, may have somehow contributed to increased inflammation. He

also still has antibodies to neutrophils which is seen in Kawasaki Disease.

We tested him for Lyme disease as OR is endemic for it and we had deer in our

backyard in our home, and found that he was both IgM and IgG positive (WB from

Igenex). So, we started his treatment with antibiotics thru an LLMD in CA, and

later he tested positive for Babesia WA1 and he was on Babesia treatment for 5

months without much improvement and we learned he also has bartonella ! So,

before I keep giving him more and more antibiotics, I wanted to test him for

CoagNegStaph and mold related issues and take care of that MSH first ! . We

learned recently that he has the HLA genotype for mold and I have the one for

CoagNegStaph and multisusceptible.

We have an appt with Dr.Shoemaker soon and I am really hoping to find answers

with his help.

Sorry it was long, but just wanted to give you a clear picture.

Jay

meganreamer@... wrote:

Jay,

I'm curious about your son. I just posted a message about my son yesterday and

his battle with mold-related illness. He too regressed starting about 16-18

months of age...I'd love to hear your story if you don't mind. My son is now 4

1/2 and just starting to turn it around...he went undiagnosed and hovered near

death for about three years. We've seen Dr. Marinkovich and are submitting all

of our paperwork this week to Dr. Shoemaker's office because I feel like he

should be better than he is....I feel like there's an aspect of this illness

that we just aren't addressing...

I see that you live in AZ...We live in the mountains of Colorado which has made

a big difference in his comfort level. Have you found a good local doctor to

help you there?

[] Helpful hints, please

Hi

We are moving to a house that has NO carpet and only has ceramic

tiles everywhere and has plenty of windows.

I have a question on contaminating materials with mold. When we

moved from OR to AZ more than a year ago into a new apartment we all

felt wonderful and my son started showing cognitive improvement. But

unfortunately (this is my educated guess) after we got our 'stuff'

from OR, we all slowly started getting the same symptoms we had in

OR.

To make things worse, there was a hole on the roof of this

apartment that may have let some water in (and the maintenance guy

suspected this hole may have been the reason why scorpions were

jumping out of the vents) The scorpion problem went away after this

hole was filled. I always left the fan on 'ON' position and this

plus the possible water collection in the vents (per the maintenance

guy) may have made things worse.

But my question is is it possible that we contaminated the

new 'stuff' with mold that may have been brought from OR in

mattresses, furniture, clothes etc ?

Since I am really in the mood to throw away 'stuff', so please give

me some ideas on what I should definitely dispose so I won't

contaminate the new place. Also, any ideas on how to keep the new

place moldfree as much as possible. Where can I get info on this ?

I would greatly appreciate your help.

Thanks so much

Jay

FAIR USE NOTICE:

[Guest guest]

I was just thinking that if you could supplement all of your diet

(including your sons) with a good, high-quality Omega 3 fatty acid,

like ideally, a high-quality high-DHA fish oil, that might be helpful.

I have heard that especially children - but really, all of us, should

supplement with DHA and EPA, as the brain needs lots of DHA, since it

is itself around 50-60% DHA by weight...

And you are breast feeding him, right? (Everyone seems to agree that

this is very important for immune system development, as well as for

the brain, as US baby formulas don't add supplemental DHA yet.)

[Guest guest]

We all take good quantities of cod liver oil daily so we've got that covered. I

don't breastfeed him and haven't for several years. His troubles started once I

started to wean him at 13 months...I gave him breast milk after I had my

daughter (they are 18 months apart) but he hasn't had any for about two years.

I called the milk bank today in Denver to start immune therapy with breast

milk...The woman there told me they've worked with many adults who are

immunocompromised who start with about 12 oz of breast milk a day and see

significant changes. We'll see how it goes.

Re: [] Helpful hints, please - For

I was just thinking that if you could supplement all of your diet

(including your sons) with a good, high-quality Omega 3 fatty acid,

like ideally, a high-quality high-DHA fish oil, that might be helpful.

I have heard that especially children - but really, all of us, should

supplement with DHA and EPA, as the brain needs lots of DHA, since it

is itself around 50-60% DHA by weight...

And you are breast feeding him, right? (Everyone seems to agree that

this is very important for immune system development, as well as for

the brain, as US baby formulas don't add supplemental DHA yet.)

FAIR USE NOTICE:

[Guest guest]

Jay,

Thanks for all the details...very much appreciated. Please keep me updated about

your son and your visit with Dr. Shoemaker...I'm hopeful we can see him and get

some further help. I'm still very confident that we can give my son back his

life and he can make a full recovery...we just need to right key to open the

door of possibilities.

Thanks,

[] Helpful hints, please

Hi

We are moving to a house that has NO carpet and only has ceramic

tiles everywhere and has plenty of windows.

I have a question on contaminating materials with mold. When we

moved from OR to AZ more than a year ago into a new apartment we all

felt wonderful and my son started showing cognitive improvement. But

unfortunately (this is my educated guess) after we got our 'stuff'

from OR, we all slowly started getting the same symptoms we had in

OR.

To make things worse, there was a hole on the roof of this

apartment that may have let some water in (and the maintenance guy

suspected this hole may have been the reason why scorpions were

jumping out of the vents) The scorpion problem went away after this

hole was filled. I always left the fan on 'ON' position and this

plus the possible water collection in the vents (per the maintenance

guy) may have made things worse.

But my question is is it possible that we contaminated the

new 'stuff' with mold that may have been brought from OR in

mattresses, furniture, clothes etc ?

Since I am really in the mood to throw away 'stuff', so please give

me some ideas on what I should definitely dispose so I won't

contaminate the new place. Also, any ideas on how to keep the new

place moldfree as much as possible. Where can I get info on this ?

I would greatly appreciate your help.

Thanks so much

Jay

FAIR USE NOTICE:

[Guest guest]

I was just wondering if you'd every tried Monolaurin. It's supposed to have the

same properties, is not terribly expensive, and is very safe to use.

meganreamer@... wrote: We all take good quantities of cod liver oil daily

so we've got that covered. I don't breastfeed him and haven't for several years.

His troubles started once I started to wean him at 13 months...I gave him breast

milk after I had my daughter (they are 18 months apart) but he hasn't had any

for about two years. I called the milk bank today in Denver to start immune

therapy with breast milk...The woman there told me they've worked with many

adults who are immunocompromised who start with about 12 oz of breast milk a day

and see significant changes. We'll see how it goes.

Re: [] Helpful hints, please - For

I was just thinking that if you could supplement all of your diet

(including your sons) with a good, high-quality Omega 3 fatty acid,

like ideally, a high-quality high-DHA fish oil, that might be helpful.

I have heard that especially children - but really, all of us, should

supplement with DHA and EPA, as the brain needs lots of DHA, since it

is itself around 50-60% DHA by weight...

And you are breast feeding him, right? (Everyone seems to agree that

this is very important for immune system development, as well as for

the brain, as US baby formulas don't add supplemental DHA yet.)

FAIR USE NOTICE:

[Guest guest]

Hi ,

Yes, I will keep you updated on our visit to Dr.S. You are right

about finding the right key. We have to keep searching no matter how

long it takes ! Hopefully between the lyme and the mold, we will

have some answers soon in our case.

take care

Jay

> Jay,

>

> I'm curious about your son. I just posted a message about my son

yesterday and

> his battle with mold-related illness. He too regressed starting

about 16-18

> months of age...I'd love to hear your story if you don't mind. My

son is now 4

> 1/2 and just starting to turn it around...he went undiagnosed and

hovered near

> death for about three years. We've seen Dr. Marinkovich and are

submitting all

> of our paperwork this week to Dr. Shoemaker's office because I

feel like he

> should be better than he is....I feel like there's an aspect of

this illness

> that we just aren't addressing...

>

> I see that you live in AZ...We live in the mountains of Colorado

which has made

> a big difference in his comfort level. Have you found a good local

doctor to

> help you there?

>

>

>

> [] Helpful hints, please

>

>

> Hi

>

> We are moving to a house that has NO carpet and only has ceramic

> tiles everywhere and has plenty of windows.

>

>

> I have a question on contaminating materials with mold. When we

> moved from OR to AZ more than a year ago into a new apartment we

all

> felt wonderful and my son started showing cognitive improvement.

But

> unfortunately (this is my educated guess) after we got our 'stuff'

> from OR, we all slowly started getting the same symptoms we had in

> OR.

>

> To make things worse, there was a hole on the roof of this

> apartment that may have let some water in (and the maintenance guy

> suspected this hole may have been the reason why scorpions were

> jumping out of the vents) The scorpion problem went away after

this

> hole was filled. I always left the fan on 'ON' position and this

> plus the possible water collection in the vents (per the

maintenance

> guy) may have made things worse.

>

> But my question is is it possible that we contaminated the

> new 'stuff' with mold that may have been brought from OR in

> mattresses, furniture, clothes etc ?

>

> Since I am really in the mood to throw away 'stuff', so please

give

> me some ideas on what I should definitely dispose so I won't

> contaminate the new place. Also, any ideas on how to keep the new

> place moldfree as much as possible. Where can I get info on this ?

>

> I would greatly appreciate your help.

>

> Thanks so much

> Jay

>

>

>

>

>

>

>

> FAIR USE NOTICE:

>

>

>

[Guest guest]

High doses of cod liver oil can be toxic.. Too much Vitamin A.

When I said fish oil, I meant something like Max EPA, NOT cod liver oil..

Your mileage may vary.. thats just what I was wondering..