Hoyt Update

[Giselle]

Hi everyone, I have simply the best news! As some of you know Hoyt had an abysmal summer - the worst tics ever. We decided we'd retest everything and added many more tests to boot (still waiting on the genomic test by the way). So happy we retested. While waiting for results however he got so much better - to the point that he's enjoying some of the best health he's had in years! Well the tests told us a lot, still has some of his already known deficiencies (B-6, magnesium, Vit. C) but his lead is almost at normal and his Mercury has gone down so much he's just peeking into the yellow whereas he was mid-level red before! And that was totally on his own - we didn't chelate at all, perhaps his immune system is kicking in? AND I found out what made his summer so horrible - he'd had a horrible case of clostridia sp? (a bad guy bacteria in his gut). Which obviously must have rectified as he's doing so well right now! Also his delayed food allergy test showed him reacting now to only 6 foods!!! (He started at 17, went UP to 23 and is now down to 6!!!) All this was from his DAN doctor. We go to his Environmental doctor next Monday (I want her to muscle test him to confirm the IGg test) as well as get some of the results from the tests she did during the same "bad" period, and then on to Nancy Mullen at the end of October. Anyway - just had to share some good news!!! Hope I don't jinx it!!!

 

Love ya all,

Giselle and Hoyt

[kim]

Giselle,

 

That is great news!

 

Did Hoyt have a challenge test for the metals? I'm asking because it seems many report improvements after the challenge.

 

I don't know if you have a copy of this. May be helpful when you get your genetics results. I'm sure you will want to memorize these notes in their entirety prior to your appt. with Dr. Mullen

 

Please keep us posted.

 

Hugs to you and Hoyt!

 

 

 

Common Terminology:

 

Methyl group: A methyl group is simply a single carbon atom bonded to

3 hydrogen atoms (CH3).

 

Methylation: Transfer of methyl groups from one chemical to another is

called methylation. Essentially any chemical compound that has a

methyl group as part of its chemical structure is capable of donating

it to another chemical that needs it. The chemical that receives the

methyl group is "methylated" . This process of moving methyl groups

around is necessary for the functioning of several biochemical rea

ctions such as DNA and RNA synthesis, creatinine generation, immune

responses involved in silencing viruses etc.

 

Role of enzymes: Most of the biochemical reactions in the body operate

as cycles that are dependent on one or more enzymes. E.g. Chemical A

gets converted to Chemical B; Chemical B in turn gets converted to

Chemical C. Each of those steps has an enzyme involved that aids in

the actual conversion of the first chemical into the second and so on.

 

In terms of the various pathways that we are addressing, there are

several enzymes involved. When these cycles are operating optimally,

each chemical moves through the various steps continuously. It is

important to remember that while it looks like each of these cycles is

o ccurring in isolation, in reality there are several copies of each

of these chemicals being converted into their respective intermediates

by several copies of enzymes. It is not a single methionine molecule

being converted to SAMe or a single homocysteine molecule being

converted to methionine but multiple copies of each by multiple copies

of the respective enzymes. I like the analogy I found on one site:

start thinking of these not as single chemicals, but buckets full of

each, and pumps (the enzymes) to move the chemical from one bucket to

the next.

 

Mutations or Single Nucleotide Polymorphism (SNP): A gene mutation is

a permanent change in the DNA sequence that makes up a gene. Mutations

range in size from one DNA base to a large segment of a chromosome. A

Single Nucleotide Polymorphism or SNP (pronounced "snip"), is a small

genetic change, or variation, that can occur within a person's DNA

sequence. The genetic code is specified by the four nucleotide

"letters" A (adenine), C (cytosine), T (thymine), and G (guanine). SNP

variation occurs when a single nucleotide, such as an A, replaces one

of the other three nucleotide letters: C, G, or T.

 

Think of mutations in enzymes as breaks that affect the ability of the

enzyme to do its job. Homozygous (++) mutations are ones where both

copies of the gene are affected and heterozygous (+-) mutations are

the ones where only one copy of the gene is affected. Each of us has

two copies of each gene that we inherit from each parent. Some

mutations speed up the activity of the enzyme (e.g. CBS upregulation)

whereas others slow them down considerably (e.g. MTHFr C677T and

A1298C, COMT mutations).

 

The "slower" mutations create a situation where the bucket cannot be

filled, like trying to fill the bath tub with the faucet only open to

a drip. The "faster" mutations are like having a hole in the bucket.

No matter how fast or slow you fill the bucket, the faster mutations

drain out all of the contents of the bucket. This is why the CBS

upregulation is such an overriding factor. It will drain the bucket.

If the bucket is filling via a slow drip, due to the MTHFr C677T

mutation, or methioninesynthaser eductase mutations, then having a hole

in your bucket will be more of a problem than if you are able to

easily refill your bucket because you do not have the slow mutations too.

 

Note: The following material is intended to be used in conjunction

with the pathway diagrams that are posted.

 

Methylation Cycle: This is the pathway at the far right in the

diagrams, it is also known as the SAM or Methio nine cycle. It is so

named because of the intermediates involved in the cycle and also

because this is the cycle that is responsible for the process of

methylation that was described above (adding or removing methyl groups

to various chemicals/metabolit es and/or reactions).

The intermediates or chemicals involved in this cycle are methionine,

S-adenosylmethionin e (SAM or SAMe), S-adenosylhomocyste ine (SAH) and

homocysteine. It involves the regeneration of methionine from

homocysteine. This conversion of homocysteine to methionine occurs

with the help of Vitamin B12 (specifically the methyl version of

Vitamin b12, methylcobalamin) and 5-methyltetrahydrof olate (folapro),

which is an intermediate in the folate cycle. Look at this cycle as

starting with methionine, methionine then being converted into the

various inte rmediates such as SAMe, SAH, homocysteine and then

ultimately being re-converted into methionine.

 

Step I: This involves methionine being converted to SAMe in the

presence of magnesium (Mg) and ATP (universal energy donor) by the

enzyme methionineadenosylt ransferase (MAT). SAMe is called the

universal methyl donor as it is the primary source of methyl groups

for most other biochemical reactions including methylation of DNA,

RNA, proteins, creatine etc.

 

Step II: SAMe, once it donates its methyl group to the various

reactions, gets converted to SAH.

 

Step III: SAH in turn is metabolized to homocysteine by the enzyme

S-adenosylhomocyste inehydrogenase (SAHH). This reaction also generates

a chemical called adenosine.

 

Step IV: There are three possible ways homocyste ine is removed as an

intermediate. One is a reversible reaction that converts homocysteine

back to methionine and is dependent on the folate cycle. The other is

an irreversible reaction that is referred to as the TransSulfuration

pathway. This involves the conversion of homocysteine into cystathione

and its subsequent intermediates. The third involves the methylation

of homocysteine into methionine, independent of the folate cycle. Let

us take a look at each of them.

 

a) TransSulfuration Cycle: This cycle entails the irreversible

conversion of homocysteine into cystathione by the enzyme cystathione

B-synthase (CBS) in the presence of Vitamin B6 and heme as cofactors.

Cystathione is in turn converted to cysteine and alphaketoglutarate.

The amount of cysteine generated by this process acts as the rate

limiting factor for the subsequent products that are generated, i.e.

taurine and/or glutath ione. If there is excess cysteine generated as

a result of the CBS upregulation (mutation that makes the enzyme

activity faster than normal), more taurine is generated instead of

glutathione. Glutathione is one of the essential antioxidants involved

with detoxification in our bodies.

 

Some of the homocysteine goes back up the cycle to regenerate

methionine. This process is mediated by the enzyme methionine synthase

(MS aka MTR), with the aid of methylcobalamin (Vitamin B12 that has a

methyl group as part of its structure). Essentially cobalamin accepts

a methyl group from 5-methyltetrahydrof olate (which is an intermediate

in the folate cycle) and becomes methylcobalamin. This is where the

SAM and folate cycles meet. Think of each of the cycles as independent

entities doing their business but each of them are dependent on one

another in order to function properly.

Methylcobalamin in turn donates the methyl group it gained to homoc

ysteine and this converts homocysteine back to methionine.

Essentially, homocysteine is being re-methylated to methionine.

 

Once methylcobalamin donates its methyl group to methionine, it

becomes cobalamin again. Some of this cobalamin is remethylated into

methylcobalamin by the enzyme methioninesynthaser eductase (MSR aka

MS_MTRR). Think of this as a reaction that is trying to maintain the

levels of methylcobalamin. The methyl group necessary for this

reaction is donated by SAMe (this reaction is not indicated on the

diagram, this is just FYI for those of you wondering what the role of

MSR is in the pathway).

Just remember that the methyl group that is donated by methylcobalamin

to convert homocysteine to methionine comes from the folate cycle

(5-methyltetrahydro folate). Once methylcobalamin donates that methyl

group to homocysteine, it becomes cobalamin which in turn gains a

methyl group from SAMe to regenerate some of the methylcobalamin.

 

c) If that wasn't complex enough, there is yet another reaction that

converts homocysteine into methionine (look at the center of the

methylation pathway diagram for this reaction). The enzyme involved

here is betainehomocysteine methyltransferas e (BHMT). BHMT converts

homocysteine into methionine in a reaction independent of the one that

is mediated by MS, i.e. the one described before, which involves the

transfer of a methyl group from 5-methyltetrahydrof olate to

methylcobalamin and from methylcobalamin to homocysteine. Just

remember that this step doesn't involve B12 or the folate cycle. In

this case methionine is regenerated from homocysteine by the transfer

of a methyl group from betaine (TMG or trimethylglycine) to

homocysteine. Once TMG loses a methyl group to homocysteine, it gets

converted to dimethylglycine (DMG). In turn homocysteine gains a

methyl group and becomes methionine.

 

This in essence is the Methylation pathway.

 

Folate Cycle: This cycle involves the conversion of tetrahydrofolate

(THF) into 5,10-methylenetetra hydrafolate which in turn gets converted

to 5-methyltetrahydrof olate (MTHF). MTHF is then converted back into THF.

 

Dietary folate, or folic acid that you get from your foods, is

converted into a product called dihydrafolate (DHF) in the presence of

Vitamin B3. DHF is then converted to THF, also with the aid of B3. THF

is converted to 5,10-methylenetetra hydrofolate with help from Vitamin

B6, P5P and Serine. Essentially THF gains a "methylene" group

(different from methyl group) from serine to become

5,10-methylenetetra hydrofolate.

Alternatively folinic acid (5-formyltetrahydro folate, different from

folic acid) is also converted to 5,10-methylenetetra hydrofolate in a

react ion occurring simultaneously.

 

5,10-methylenetetra hydrofolate is then converted to

5-methyltetrahydrof olate (MTHF) aka "Folapro" by the enzyme

methylenetetrahydra folatereductase (MTHFr) with the aid of NADH, B2

and ATP.

 

MTHFr: The MTHFr enzyme has multiple functions. However we are

concerned with two of the roles it plays with respect to autism and

these pathways. The first one being its involvement in the generation

of MTHF within the folate cycle and the second being its ability to

drive the conversion of BH2 to BH4 (BH4 cycle). Mutations in the part

of the eznyme that is involved in the folate cycle are characterized

as the "C677T" mutation and this mutation slows down the activity of

the enzyme. This means MTHF production will be affected. Why does the

amount of MTHF (folapro) matter? Because if you remember from the

previous discussion on the Methylation pathway, MTHF is the c ompound

that donates the methyl group to cobalamin which in turn donates it to

homocysteine to regenerate methionine. If we have less of the MTHF to

begin with, there will be less of it to go around to regenerate THF in

the folate cycle, and to transfer methyl groups to regenerate

methionine in the Methylation cycle. So this will affect not only the

Folate cycle but also the Methylation cycle. Remember the Folate and

Methylation pathways meet to transfer methyl groups and any breaks

preceding that transfer will affect the functioning of both of the

pathways.

 

As mentioned before MTHFr has a dual role in terms of these pathways.

While it is driving the folate cycle in one direction, it is also

driving a reverse reaction on the other side. This reaction is the

conversion of BH2 to BH4. Mutations that affect this part of the

enzyme are characterized as "A1298C" mutation.

 

BH4 Cycle: Tetrahydrobiopterin (BH4) is essential for normal central

nervous system functioning. It is an essential factor or cofactor for

the enzymes in the biological pathways necessary for synthesizing

catecholamines (dopamine, noradrenaline/ norepinephrine) and

indolamines (serotonin and melatonin), as well as for all three

isotypes of nitric oxide synthases (NOS in the Urea cycle). BH4 is a

cofactor for tyrosine and trytophan hydroxylase, the enzymes involved

in catecholamine and indolamine synthesis respectively. The rate of

BH4 formation determines the rate of production of these important

neurotransmitters, because BH4 happens to be the rate limiting factor

here. How much of it is present affects the ability to synthesize

neurotransmitters like dopamine, norepinephrine, serotonin etc. and

also affects the outcome of the Urea Cycle.

 

Tyrosine (amino acid) is converted to dopamine through a series of

reactions involving the e nzyme dihydroxyphenylalan inereductase

(DHPR). Dopamine can be further metabolized to norepinephrine by the

enzyme dopamine-b-hydroxyl ase. Dopamine and norepinephrine can also be

metabolized by the enzyme monoamine oxidase (MAO) to

3,4,-dihydroxypheny lacetic acid or the enzyme

Catechol-O-MethylTr ansferase (COMT) to 3-methoxytyramine. Action by

both enzymes results in the formation of homovanillic acid (HVA or

3-methoxy-4hydroxy- phenylacetic acid ) and VMA.

 

Serotonin (5-HT) is synthesized from the amino acid tryptophan in two

steps catalyzed by the enzymes tryptophan hydroxylase and L-amino acid

decarboxylase. Serotonin is metabolized by monoamine oxidase (MAO) to

5-hydroxyindoleacet ic acid (HIAA).

 

Serotonin can also be methylated (first acetylated i.e. addition of

acetyl group and then methylated) to form Melatonin. The enzyme

involved in the acetylation of serotonin to form N-acetylserotonin is

serotonin-N- acetyltransferas e. N-acetylserotonin is methylated

(addition of methyl group) to form melatonin by the enzyme

HydroxyIndole- O-MethylTransfer ase.

 

The A1298C mutation in the MTHFr enzyme affects the conversion of

dihydrobiopterin (BH2) to tetrahydrobiopterin (BH4). Less amounts of

BH4 will therefore put a strain on the conversion of trytophan to

serotonin and tyrosine to dopamine. This will lead to low levels of

neurotransmitters such as dopamine, norepinephrine, serotonin and

melatonin.

In addition the activity level of the COMT enzyme will further affect

the levels of dopamine and norepinephrine.

 

COMT: Catechol-O-MethylTr ansferase is the enzyme involved in the

metabolism of dopamine and norepinephrine into subsequent compounds

such as HVA and VMA. The rate of activity of COMT will determine how

fast these neurotransmitters will be broken down. Mutations in the

COMT enzyme (COMT ++ or COMT +-) actually slow down the activity of

the enzyme. Normal COMT activity (no mutations) is depicted as COMT --

Mutations in the COMT enzyme will slow down the breakdown of dopamine,

therefore individuals who are COMT ++ or +- have higher (as in good)

levels of dopamine compared to COMT -- individuals who are rapidly

draining their dopamine stores. This condition is further exacerbated

if the individual has the A1298C mutation (++ or +-) because their

dopamine levels are low to begin with (remember these individuals have

less BH4, so less dopamine gets made).

 

Undermethylators: Dr.Amy categorizes individuals who are COMT -- as

undermethylators.

One of the ways the COMT enzyme breaks down dopamine is by using a

methyl group donated by SAMe (remember it is the universal methyl

donor). Therefore a COMT -- individual wi ll be in constant need of

methyl groups as they are rapidly metabolizing dopamine. This puts a

strain on the Methylation cycle as the demand on SAMe for methyl

groups is increased. Think of this as COMT constantly demanding methyl

groups from SAMe. If there are issues in the Methylation cycle or

Folate cycle that affect the levels of SAMe (which in turn is

dependent on the levels of methionine), there will be less methyl

groups to begin with and even less to go around. It is like a domino

affect. A break or strain in one cycle has a ripple effect on the rest

as they are all co-dependent. Less methyl groups -> less methylation

-> less RNA/DNA/protein synthesis/heavier viral load due to lack of

methylation etc.

 

Overmethylators: These are the individuals who are COMT ++. Mutations

make the COMT enzyme slower, so it will not break down dopamine as

rapidly. Since it is slower in metaboli zing dopamine, its demand for

methyl groups is also reduced. Subsequently there is less of a strain

on SAMe for methyl groups. So there will be relatively more methyl

groups available for other biochemical reactions and to go around the

various cycles.

 

Remember these are just relative terms. An undermethylator is low in

methyl groups and an overmethylator has a higher store of them, in

comparison. Remember one of the reasons we are in this predicament

with autism is because we have problems with methylation, regardless

of the under or over status.

 

In addition the strain on the BH4 cycle, the amount of BH4 will also

affect the functioning of the Urea cycle. BH4 is the rate limiting

factor for the Urea cycle. Two molecules of BH4 are necessary to drive

the Urea cycle. One molecule will in turn generate peroxynitrite and

if the individual has no BH4 left, super oxide is formed.

Peroxynitrite and super oxide in combination cause damage to neurons

when they accumulate in excess. . Peroxynitrite is a potent oxidant,

which is capable of DNA strand scission (breaks open the bonds that

keep the two DNA strands bound in a double-helix) , and nitrating

tyrosine, all of which wreak havoc on the nervous system, especially a

developing nervous system as in children. The ability to detoxify

superoxide is facilitated by the enzyme superoxidedismutase (SOD).

 

Urea Cycle: Urea is the chief nitrogenous waste of mammals. Most of

our nitrogenous waste comes from the breakdown of amino acids.

Breakdown of amino acids results in the production of ammonia (NH3).

Ammonia is a toxic compound that is converted into its safer counterp

art urea, by enzymes in the liver. Urea is then eliminated by our

kidneys. Essentially the urea cycle involves the conversion of ammonia

into urea with the help of the intermediates listed below.

Arginine from our diet or from protein metabolism is converted to

ornithine and urea by the enzyme Arginase. Ornithine is then converted

to citrulline by ornithine transcabamoylase. This is the reaction on

the far left side of the pathway diagram. Citrulline is converted back

to arginine. This cycling of Arginine through the various

intermediates is what converts ammonia to urea.

Arginine is also required for the production of Nitric Oxide (NO) by

the enzyme nitric oxide synthase (NOS or eNOS). This reaction is

dependent on the levels of BH4 available from the BH4 cycle. Remember

two molecules of BH4 are needed to generate Citrulline and NO. One

molecule of BH4 will in turn generate peroxynitrite and if there is no

BH4, super oxide is formed. If we do not have enough BH4 to go around

because of the A1298C mutation, we are going to have trouble with

ammonia. Because ammonia is dangerous to the body, any BH4 we have is

going to be used to try to get rid of the ammonia rather than to be

making neurotransmitters like serotonin and dopamine. Furthermore

mutations in the NOS (eNOS) exacerbate the situation as they will

affect the synthesis of NO. NO is needed for several functions

including secretion of certain hormones, addressing inflammation,

killing pathogens etc.

 

In essence if the limited supply of BH4 puts a strain on the

functioning of this pathway, excess ammonia will accumulate as there

is not enough BH4 to help convert it to urea. In addition the lack of

BH4 also creates damaging free radicals like peroxynitrite and super

oxide (SOD is needed to detoxify superoxide).

 

 

 

 

__._,_._

[patty]

Giselle,

 

What wonderful news! I am happy for you & Hoyt. Your story further supports that the body can heal itself. There is so much hope for us mothers out there.

 

BTW, you mentioned food delayed sensitivites has reduced to 6 items. Can you share with us what you have been doing to help with this?

 

Thx!

 

Pat

[Chemar]

what wonderful news Giselle!

 

may it keep getting better and better

[81lumberjack]

Hi everyone, I have simply the best news! As some of you know Hoyt had an abysmal summer - the worst tics ever. We decided we'd retest everything and added many more tests to boot (still waiting on the genomic test by the way). So happy we retested. While waiting for results however he got so much better - to the point that he's enjoying some of the best health he's had in years! Well the tests told us a lot, still has some of his already known deficiencies (B-6, magnesium, Vit. C) but his lead is almost at normal and his Mercury has gone down so much he's just peeking into the yellow whereas he was mid-level red before! And that was totally on his own - we didn't chelate at all, perhaps his immune system is kicking in? AND I found out what made his summer so horrible - he'd had a horrible case of clostridia sp? (a bad guy bacteria in his gut). Which obviously must have rectified as he's doing so well right now! Also his delayed food allergy test showed him reacting now to only 6 foods!!! (He started at 17, went UP to 23 and is now down to 6!!!) All this was from his DAN doctor. We go to his Environmental doctor next Monday (I want her to muscle test him to confirm the IGg test) as well as get some of the results from the tests she did during the same "bad" period, and then on to Nancy Mullen at the end of October. Anyway - just had to share some good news!!! Hope I don't jinx it!!!

 

Love ya all,

Giselle and Hoyt

[81lumberjack]

Giselle,

 

You mentioned clostridia. Did you do any specific interventions to get that stuff down? We've been told that clostridia can actually cause tics/stims.

 

Thanks

[Giselle]

Hi again! Yes, we are so thrilled!!!

 

Kim, yes it was challenged/provoked. All his metals tests have been, with DMSA - is that a bad thing? I hope not, regardless, this test shows amazing results compared to the last ones we did (3 years ago, 2 years ago, 1 year ago). Someone told me (Caroline?) that your body gets rid of things in order-ish. Mercury goes, then lead, then other things start leaching out? Don't know if that's true but it would explain the mercury going down so much and less gains in the lead (although his lead wasn't that high to begin with and did improve over all).

 

Patty, we got his food sensitivities down because I have become what I affectionately call myself: A food Nazi. I am religious in the avoidance of his food allergens. It has been a trying path, one that had me in tears often when I realized I'd goofed up (those early days) but if he's showing antibodies to it it just simply doesn't pass his lips - ever. Yesterday we really celebrated his strict avoidance by talking all about the ways he feels so good right now. I told him that all his hard work is finally paying off and he really can feel it. He says he feels smarter (he's not ticcing so he can actually listen to the lessons and get them the first time around!) And he says he has so much more energy at P.E. (well sure, he isn't burning it all up ticcing!). I found amazing recipes that don't include his allergens so he never had to do without good stuff, just couldn't eat commercial stuff. Which was hard like at birthday parties, at the movies, etc. We found restaurants that had choices that didn't include his allergens. Lastly I rotated most all of the foods he could eat. Early on I had him eating the foods he could eat all the time - then he developed allergies to those because he ate them too much so his allergens went up - now that I rotate his food we have been rewarded with this great news. I think he's just hypersensitive to getting the same stuff all the time - it was most definitely harder for me but I am so happy now that I've done it! He can never go back to eating all those allergens all the time but now I can rotate some of them in occasionally with hopefully no ill effect. Funnily the one I'm most happy about is tomato! You really can't cook a lot of saucy stuff without them. There were so many times I just wished I could make a good healthy chilli but without tomatos? How? P.S. I despise!!!! cooking so I figure I'm going straight to heaven because this is most definitely penance!!! By the by he only gets organic food (so dang expensive!!!) and no artificial anything, no colored anything!

 

81lumberjack, I have no idea how we got his clostridia down - we didn't even know he had it! He just got better (after 2 months of the worst tics ever). We did basically nothing all summer because of his condition so he got lots of rest. It sucked because he couldn't even go to the premiere of his Dad's movie Underdog (he did the special effects). But he was ticcing so badly he just couldn't go. But now our DAN doctor has given us Florastor which supposedly really helps with it. He had been taking probiotics throughout all this so perhaps that helped? Maybe it's not gone? I have to research this as I'd never even heard of it and as we just found out yesterday I haven't even had the chance!!

 

Anyway, keep your fingers crossed for us! And THANK YOU for all your prayers for him, me - I can't even tell you how much knowing I have you all here does for me!!!!

[Guest]

Hi Giselle & Hoyt,

 

I'm glad that Hoyt's doing so much better. I almost posted to see how Hoyt was doing a few days ago because it seems like it's been a long time since we've heard from you. Congrats on getting the mercury and lead levels down, less food problems, and and getting rid of the clostridia!

 

I think the way heavy metals are said to come out is that lead & mercury are the last to come out. That's just what I've been told, but I've also seen doctors that say there is no certain order of how heavy metals come out. I personally haven't seen any pattern on how my heavy metals have come out in the past two years.

 

Carolyn

[kim]

Giselle,

 

These are a few remarks that I have read along the way. I don't have personal experience with this, so understand these are just the opinions of posters/parents. You kind of get to know, who really knows "their stuff," though. They are the ones, that I tend to remember.

 

Someone that I greatly respect, made the comment that DMSA is probably helping the body to excrete other nasties, besides just metals.

DMSA may be providing a good bit of sulfur, which may be very beneficial to some. These are two reasons that some suspect that gains are seen, shortly after a challenge.

 

One parent rages, about having to educate his DAN, then being charged a big bill. He was advised to stop chelating, based on low metal excretion, with DMSA challenge, when his son was still highly toxic. He feels the french Porpyrine test, is the only way to go.

 

Some feel that there is a possibility of redistribution with DMSA challenges.

 

These are just a few of the pros and cons that I can think of. Overall, it sounds like Hoyt reacted very well!

 

 

 

Lumberjack, I think Vancomycin is the treatment most often prescribed for clostridia. Also probiotics with emphasis on saccharomyces boullaris. There may be other treatments. I think there is another antibiotic that is used frequently, but I can't remember what it is.

[Toms_Mom]

Hi again! Yes, we are so thrilled!!!

 

Kim, yes it was challenged/provoked. All his metals tests have been, with DMSA - is that a bad thing? I hope not, regardless, this test shows amazing results compared to the last ones we did (3 years ago, 2 years ago, 1 year ago). Someone told me (Caroline?) that your body gets rid of things in order-ish. Mercury goes, then lead, then other things start leaching out? Don't know if that's true but it would explain the mercury going down so much and less gains in the lead (although his lead wasn't that high to begin with and did improve over all).

 

Patty, we got his food sensitivities down because I have become what I affectionately call myself: A food Nazi. I am religious in the avoidance of his food allergens. It has been a trying path, one that had me in tears often when I realized I'd goofed up (those early days) but if he's showing antibodies to it it just simply doesn't pass his lips - ever. Yesterday we really celebrated his strict avoidance by talking all about the ways he feels so good right now. I told him that all his hard work is finally paying off and he really can feel it. He says he feels smarter (he's not ticcing so he can actually listen to the lessons and get them the first time around!) And he says he has so much more energy at P.E. (well sure, he isn't burning it all up ticcing!). I found amazing recipes that don't include his allergens so he never had to do without good stuff, just couldn't eat commercial stuff. Which was hard like at birthday parties, at the movies, etc. We found restaurants that had choices that didn't include his allergens. Lastly I rotated most all of the foods he could eat. Early on I had him eating the foods he could eat all the time - then he developed allergies to those because he ate them too much so his allergens went up - now that I rotate his food we have been rewarded with this great news. I think he's just hypersensitive to getting the same stuff all the time - it was most definitely harder for me but I am so happy now that I've done it! He can never go back to eating all those allergens all the time but now I can rotate some of them in occasionally with hopefully no ill effect. Funnily the one I'm most happy about is tomato! You really can't cook a lot of saucy stuff without them. There were so many times I just wished I could make a good healthy chilli but without tomatos? How? P.S. I despise!!!! cooking so I figure I'm going straight to heaven because this is most definitely penance!!! By the by he only gets organic food (so dang expensive!!!) and no artificial anything, no colored anything!

 

81lumberjack, I have no idea how we got his clostridia down - we didn't even know he had it! He just got better (after 2 months of the worst tics ever). We did basically nothing all summer because of his condition so he got lots of rest. It sucked because he couldn't even go to the premiere of his Dad's movie Underdog (he did the special effects). But he was ticcing so badly he just couldn't go. But now our DAN doctor has given us Florastor which supposedly really helps with it. He had been taking probiotics throughout all this so perhaps that helped? Maybe it's not gone? I have to research this as I'd never even heard of it and as we just found out yesterday I haven't even had the chance!!

 

Anyway, keep your fingers crossed for us! And THANK YOU for all your prayers for him, me - I can't even tell you how much knowing I have you all here does for me!!!!

[Toms_Mom]

Giselle,

I was reading your post about reducing your child's food allergies, which is very encouraging to hear. I was wondering if you could give me some ideas on where to find recipes for dinner, snacks etc.? My son is allergic to milk, corn and cane sugar and I am finding there is very little he can eat. Almost everything needs to be made from scratch and if I look up corn free recipes they usually contain dairy or sugar and vise versa. I really would like to find some kind of sweet treats to make him once in a while. He is such a good boy and eats whatever I make him and I feel guilty and would like to be able to make some desserts for him. How do you make a cookie without sugar, corn or dairy? The Namaste brownies are corn and dairy free, but have organic cane juice which I believe is cane sugar? Also since he cannot have butter we have been using earth balance or smart balance organic and I just realized they both contain corn. What do you use in place of butter? If anyone has any ideas I would greatly appreciate it. Thanks so much!