Re: test results- what do they mean

[Guest guest]

>

> hello, i am seeing a dr, not Dr S that follows some of his

testing, so

> far i have very disturbing results.

>

> Very low non existant MSH

> low ADH

> Low VIP

> C3a is very high

> C4a is very high

> High cortisol

> Low vitamin D

> cd57 went from a 10 to a 40 in a few months.

>

> some dr thought i had lyme or have it, i just dont

know..........yeast,

> mold, lyme all have similar symptoms.

>

> thanks for any input.

>

Unfortunately, your results are not unusual for those of us that are

sensitive to the toxins (from mold and Lyme). I think the reason the

Dr. thinks you had Lyme is due to the CD57 (here's details on this

test - there's a link that explains what it means in terms of Lyme:

http://www.anapsid.org/lyme/strickerpanel.html )

I never had the test for my Lyme as it's a newer test, but as with

most tests involving Lyme, it's just one piece of information and not

necessarily indicative of Lyme. The fact that your CD57 is

increasing would actually be considered a good thing if I'm recalling

correctly.

The elevated C3A and C4A are also potential indicators of Lyme, but

they're also high for mold patients. Here's the blurb on C3A from

Mold Warrior website:

" C3A: a by-product of activation of the third component of

complement. C3a can continue to activate C3 when the alternative

pathway of complement is activated, creating a high risk for chronic

fatigue and persistent symptoms in mold patients (see anaphylatoxin) "

C4A is another complement and my understanding is that it reflects

inflammation and high levels can be due to Lyme or Mold.

The vitamin D is something unrelated to all of this (as far as I

know - if anyone knows otherwise, I would love to hear about it), but

something that more progressive doctors are monitoring as they're

finding that low levels of D is a factor in alot of disease processes

(like diabetes, osteoperosis, etc.). I take Cod Liver Oil on a

regular basis (and have above normal levels of vitamin D as a result)

and try to get some sun (10-20 minutes a day), which is the best

source of vitamin D. Unfortunately, the obsession in our culture with

sunscreen has resulted in lots of folks having low levels of vitamin

D. Low levels of vitamin D have also been correlated with

depression.

Low VIP (Vasoactive Intestinal Peptide) is another side affect of the

toxins. Apparently, it's not isolated to your intestines. Here's a

summary of VIP functions from medlineplus:

- It may be a neurotransmitter or neuromodulator

- It increases water and electrolyte secretion from the pancreas

and gut

- It stimulates the release of hormones from the pancreas, gut, and

hypothalamus

- It stimulates breakdown of fat and glycogen

- It stimulates bile flow

- It inhibits gastrin and gastric acid secretion

Given the level of hormonal disruption many of us have, I find it

quite interesting that low VIP may well play a role in that problem.

The low ADH means that you have low anti-diuretic hormone. If you

also have higher than normal levels of osmolality, then they can give

you a replacement hormone IF you have issues with frequent urination

and extreme thirst. My osmolality went within the normal range after

4 months on the CSM, however, I still remained quite thirsty and had

to pee often. Since I've moved out of my moldy house, I am much less

thirsty.

High cortisol is just another indicator that your hormones are out of

whack. One note of caution I have on this blood test is that it's

really meaningless in that your cortisol levels change throughout the

day and a one time blood measure really doesn't give a good picture.

For example, my cortisol looks low normal when measured during the

day. However, I've done saliva tests that show it's abnormally low

in the morning, low normal throughout the day and abnormally high at

nite, which explains why I can't get out of bed in the morning and

feel great at 11 pm.

Just out of curiousity, did the doctor run the HLA-DR (gene test)? I

personally find that the most interesting as that provides guidance

as to what might be your biggest problem AND how well you can expect

to do on the protocol. Since I'm a dreaded genotype, I knew that it

was a long, tough road and it has indeed been. Without that

information, I know I would have given up on the protocol after a

very short time.

Be Well,

B.

[Guest guest]

Wow, thanks so much for all that info. I now have a better

understanding of it all. So, it could be lyme and mold causing all

of this. Do you know how yeast plays a role......

I forgot to mention I also have a high strep ASO titre that went up

on amoxicillin, when it should have gone down :-( Dr wasnt sure what

to make of that one.

I am going to get my AM and PM cortisol done soon.....My AM is always

high.

I am also thirsty a lot, and used to pee a lot........now i have the

lovely IC of the bladder (painful bladder syndrome) which is

basically little tears in my bladder, that cause burning and pain and

frequent urination.

Is there a CSM alternative? I cant take it because of the citric

acid....

My hormones are all out of wack....im hypothyroid and my period

stopped in june.........im working with a gyn with this issue.

I dont know what my HL marker is.......she didnt test that

one.......but i am certain i am the worst possible out there.

My body was hit and deteriorated rapidly within two months.

Do you have lyme?

> >

> > hello, i am seeing a dr, not Dr S that follows some of his

> testing, so

> > far i have very disturbing results.

> >

> > Very low non existant MSH

> > low ADH

> > Low VIP

> > C3a is very high

> > C4a is very high

> > High cortisol

> > Low vitamin D

> > cd57 went from a 10 to a 40 in a few months.

> >

> > some dr thought i had lyme or have it, i just dont

> know..........yeast,

> > mold, lyme all have similar symptoms.

> >

> > thanks for any input.

> >

>

>

> Unfortunately, your results are not unusual for those of us that

are

> sensitive to the toxins (from mold and Lyme). I think the reason

the

> Dr. thinks you had Lyme is due to the CD57 (here's details on this

> test - there's a link that explains what it means in terms of Lyme:

> http://www.anapsid.org/lyme/strickerpanel.html )

> I never had the test for my Lyme as it's a newer test, but as with

> most tests involving Lyme, it's just one piece of information and

not

> necessarily indicative of Lyme. The fact that your CD57 is

> increasing would actually be considered a good thing if I'm

recalling

> correctly.

>

> The elevated C3A and C4A are also potential indicators of Lyme, but

> they're also high for mold patients. Here's the blurb on C3A from

> Mold Warrior website:

> " C3A: a by-product of activation of the third component of

> complement. C3a can continue to activate C3 when the alternative

> pathway of complement is activated, creating a high risk for

chronic

> fatigue and persistent symptoms in mold patients (see

anaphylatoxin) "

>

> C4A is another complement and my understanding is that it reflects

> inflammation and high levels can be due to Lyme or Mold.

>

> The vitamin D is something unrelated to all of this (as far as I

> know - if anyone knows otherwise, I would love to hear about it),

but

> something that more progressive doctors are monitoring as they're

> finding that low levels of D is a factor in alot of disease

processes

> (like diabetes, osteoperosis, etc.). I take Cod Liver Oil on a

> regular basis (and have above normal levels of vitamin D as a

result)

> and try to get some sun (10-20 minutes a day), which is the best

> source of vitamin D. Unfortunately, the obsession in our culture

with

> sunscreen has resulted in lots of folks having low levels of

vitamin

> D. Low levels of vitamin D have also been correlated with

> depression.

>

> Low VIP (Vasoactive Intestinal Peptide) is another side affect of

the

> toxins. Apparently, it's not isolated to your intestines. Here's

a

> summary of VIP functions from medlineplus:

> - It may be a neurotransmitter or neuromodulator

> - It increases water and electrolyte secretion from the pancreas

> and gut

> - It stimulates the release of hormones from the pancreas, gut,

and

> hypothalamus

> - It stimulates breakdown of fat and glycogen

> - It stimulates bile flow

> - It inhibits gastrin and gastric acid secretion

> Given the level of hormonal disruption many of us have, I find it

> quite interesting that low VIP may well play a role in that

problem.

>

> The low ADH means that you have low anti-diuretic hormone. If you

> also have higher than normal levels of osmolality, then they can

give

> you a replacement hormone IF you have issues with frequent

urination

> and extreme thirst. My osmolality went within the normal range

after

> 4 months on the CSM, however, I still remained quite thirsty and

had

> to pee often. Since I've moved out of my moldy house, I am much

less

> thirsty.

>

> High cortisol is just another indicator that your hormones are out

of

> whack. One note of caution I have on this blood test is that it's

> really meaningless in that your cortisol levels change throughout

the

> day and a one time blood measure really doesn't give a good

picture.

> For example, my cortisol looks low normal when measured during the

> day. However, I've done saliva tests that show it's abnormally low

> in the morning, low normal throughout the day and abnormally high

at

> nite, which explains why I can't get out of bed in the morning and

> feel great at 11 pm.

>

> Just out of curiousity, did the doctor run the HLA-DR (gene test)?

I

> personally find that the most interesting as that provides guidance

> as to what might be your biggest problem AND how well you can

expect

> to do on the protocol. Since I'm a dreaded genotype, I knew that

it

> was a long, tough road and it has indeed been. Without that

> information, I know I would have given up on the protocol after a

> very short time.

>

> Be Well,

> B.

>

[Guest guest]

CSM has citric acid in it?

>

> Wow, thanks so much for all that info. I now have a better

> understanding of it all. So, it could be lyme and mold

[Guest guest]

Mich2604, should have also asked, did your doctor tell you to stay

away from citric acid or do you just notice that you have trouble with

citric acid?

>

> Wow, thanks so much for all that info. I now have a better

> understanding of it all. So, it could be lyme and mold causing

[Guest guest]

>

> CSM has citric acid in it?

>

>

The normal prescription one does have citric acid, along with a bunch

of other additivies like artifical colors and flavoring. If you're

sensitive to additives, then you can get a compounded version that

contains just the CSM resin, which is the active ingredient. The

inactive ingredients in the normal prescription version account for

over half the contents.

[Guest guest]

>

> Wow, thanks so much for all that info. I now have a better

> understanding of it all. So, it could be lyme and mold causing

all

> of this. Do you know how yeast plays a role......

>

> I forgot to mention I also have a high strep ASO titre that went up

> on amoxicillin, when it should have gone down :-( Dr wasnt sure

what

> to make of that one.

It wouldn't be clear to my either why this would happen either,

although I do know that many Lyme patients will have lower antibodies

before abx and they will peak during abx treatment.

>

> I am going to get my AM and PM cortisol done soon.....My AM is

always

> high.

My AM was high for a long time and then dropped. I'm not sure why

that happened at all.

>

> Is there a CSM alternative? I cant take it because of the citric

> acid....

See my other note on this - you can get the CSM compounded plain.

However, I think it is also possible to react to the CSM itself over

time, which is what I did. I had my accupuncturist treat me for that

reaction and was able to take it again with no problem (after staying

off for 24 hours).

>

> My hormones are all out of wack....im hypothyroid and my period

> stopped in june.........im working with a gyn with this issue.

Just a caution that if your doctor is unfamiliar with Shoemaker's

biotoxin pathway theory, it can be hit or miss in fixing any hormonal

problems. In his model, a basic problem is the low MSH that

influences all your other hormonal systems. So, our hormonal

abnormalities don't at all fit into any normal disease process that

these doctors were taught in medical school. My local physician

still cannot understand what's going on with my thyroid (after 1.5

years) and she is actually very knowledgeable about thyroid

overall. Fortunately, she's given my flexibility in my T4 and T3

dosage, so I can adjust it on a regular basis. I think the problem

is that the toxins interact with your hormones differently every day,

so it is impossible to stabilize them.

>

> I dont know what my HL marker is.......she didnt test that

> one.......but i am certain i am the worst possible out there.

> My body was hit and deteriorated rapidly within two months.

>

I don't know that you can judge from that based on my family's

experience. My kids were also impacted by the mold (but not Lyme)

and my oldest son seemed the sickest, however, he recovered the most

quickly on the CSM as he is just a mold genotype and a low MSH

genotype. My younger son and I, who are both mold and dreaded

genotypes have taken much, much longer to feel better. I think the

HLA marker would be important in terms of telling you whether Lyme or

mold is a bigger issue for you.

>

> Do you have lyme?

Yes, I do have Lyme also and it wasn't until I went to Dr. Shoemaker

that I realized that mold was actually an even bigger problem for

me. The Lyme adds a tremendous amount of toxins to your system and

if you're living in an environment that's moldy or has toxins

leftover from a mold problem, it's virtually impossible to get over

the Lyme no matter how many abx you might dump in your body. The

good news is (from my experience) is that once you get out of the

moldy environment, the Lyme becomes a much smaller issue and more

background noise than a problem itself to be resolved. However, per

my comment above on the genotype, I think this has been my experience

because I am a mold genotype rather than a Lyme genotype (along with

my dreaded genotype).

Be well,

B.

[Guest guest]

Yes, I think everyone who takes CSM long term should have it

compounded, mine is a pure resin with a little stevia for sweetness.It

is no more expensive-it is the only med proven to work-I have it mail

ordered from Hopkinton Drug Inc-#508-435-4441-call and ask for the

compounding Dept-you need to fax them your Perscript-Have your Dr write

it-excipient free-dye free- sugar free. They are well versed at that

store with our needs.

-

-- In , " mhbarnes_99 " <mary.barnes@...>

wrote:

>

>

> >

> > CSM has citric acid in it?

> >

> >

> The normal prescription one does have citric acid, along with a bunch

> of other additivies like artifical colors and flavoring. If you're

> sensitive to additives, then you can get a compounded version that

> contains just the CSM resin, which is the active ingredient. The

> inactive ingredients in the normal prescription version account for

> over half the contents.

>

[Guest guest]

Re: all the additives in CSM

, and all

Perhaps that accounts for my difficulty

tolerating it. I just put it in juice anyway. I

don't need flavorings, etc. It is okay to put in

juice, isn't it???

[Guest guest]

>

> Re: all the additives in CSM

> , and all

> Perhaps that accounts for my difficulty

> tolerating it. I just put it in juice anyway. I

> don't need flavorings, etc. It is okay to put in

> juice, isn't it???

>

I think it's fine to add it to a juice that you tolerate (that's listed

on the normal CSM directions). For my kids, I mix it in Orange Juice -

they're not fond of it, but they'll drink it down in the OJ.

[Guest guest]

I'm having the CSM compounded. Haven't started yet and it is more expensive,

but all additives are gone which I can't tolerate.

mhbarnes_99 <mary.barnes@...> wrote:

>

> Re: all the additives in CSM

> , and all

> Perhaps that accounts for my difficulty

> tolerating it. I just put it in juice anyway. I

> don't need flavorings, etc. It is okay to put in

> juice, isn't it???

>

I think it's fine to add it to a juice that you tolerate (that's listed

on the normal CSM directions). For my kids, I mix it in Orange Juice -

they're not fond of it, but they'll drink it down in the OJ.

[Guest guest]

Yes, the powder that i was given has it in it, among other chemicals

and sugars and the orange flavor.-

-- In , " barb1283 " <barb1283@...> wrote:

>

> CSM has citric acid in it?

>

>

> >

> > Wow, thanks so much for all that info. I now have a better

> > understanding of it all. So, it could be lyme and mold

>

[Guest guest]

barb-

I have a chornic bladder condition called intercestial cystitis or IC

for short....it started when i cam down with this illness....anything

citrus or acidic causes me horrible burning that can last for weeks at

a time, we call them flares. Its like having an ulcer in you

stomach...ICers have a special diet....we are extremly sensitive to

additives in all meds and supliments...which makes treatment difficult

i know for certain cetric acid hurts me.......thru a painful process of

tril and error.

> >

> > Wow, thanks so much for all that info. I now have a better

> > understanding of it all. So, it could be lyme and mold causing

>

[Guest guest]

It also has in it yellow dye no 4 which is listed as being an allergen

to some people.

> >

> > CSM has citric acid in it?

> >