Test Results

April 29, 2001

Conmsider the white band to be part of the green band. Take a green

hilighter and make it all green down the milddle, the count. Green

(containing white also) = " average. " Yellow = " elevated " or " low. "

Red/peach = " very elevated " or " very low. "

> Hi,

> I am a member on the autism treatment list. If you have the time

could you

> answer my question regarding the hair test results from Doctors

Data?

> Does the 50 th % ile mean only what is inside the white band?

> When I followed the counting rules, I counted the results in the

green, yellow

> and peach colored areas. My son came up with 9 above avg.; 21

very elevated

> or very low; and only 2 directly within the middle WHITE band.

>

> There are 4 othres that come only slightly outside the middle white

band; 2

> left and 2 right. But we fit 2 out of 3 of the criteria anyway.

> The two left were lithium & magnesium.

> Thanks for any help that you can give. I am sending my other sons

hair out

> today.

> --

>

> Sincerely, Ce

April 29, 2001

Dear Cece,

If you meet 2 out of 3 criteria you meet the whole thing.

You only have to meet ANY ONE of the criteria.

I don't know about the colored bands.

--Moria

At 11:13 AM 4/28/2001 -0600, you wrote:

>Hi,

>I am a member on the autism treatment list. If you have the time could you

>answer my question regarding the hair test results from Doctors Data?

>Does the 50 th % ile mean only what is inside the white band?

>When I followed the counting rules, I counted the results in the green,

yellow

>and peach colored areas. My son came up with 9 above avg.; 21 very

elevated

>or very low; and only 2 directly within the middle WHITE band.

>

>There are 4 othres that come only slightly outside the middle white band; 2

>left and 2 right. But we fit 2 out of 3 of the criteria anyway.

>The two left were lithium & magnesium.

>Thanks for any help that you can give. I am sending my other sons hair out

>today.

>--

>

>Sincerely, Cece Berger

>

>=======================================================

>

March 5, 2002

> Can anyone help me decipher these test results on my 5 year old son?

>

> BUN/C RATIO 35.0 HIGH range: (12.0-20.0)

The ratio of " blood urea nitrogen " to creatinine is elevated.

>

> RBC 4.16 LOW range: (4.70-6.10)

He doesn't have enough red blood cells.

>

> PLATELET 482 HIGH range: (140-440)

He has too many platelets.

>

> Thanks in advance. )

>

> Kim

> " Bradley's Mom "

> http://help-bradley.tripod.com

March 6, 2002

I had already figured that much out.

[ ] Re: test results

> Can anyone help me decipher these test results on my 5 year old son?

>

> BUN/C RATIO 35.0 HIGH range: (12.0-20.0)

The ratio of " blood urea nitrogen " to creatinine is elevated.

>

> RBC 4.16 LOW range: (4.70-6.10)

He doesn't have enough red blood cells.

>

> PLATELET 482 HIGH range: (140-440)

He has too many platelets.

>

> Thanks in advance. )

>

> Kim

> " Bradley's Mom "

> http://help-bradley.tripod.com

March 6, 2002

> I had already figured that much out.

LOL

Hi Kim,

I was surprised about that reply too.

Anyway, not long ago I needed to find out some similar things, so I have some

pages saved on my computer. I will try to find the info that might interest

you and will copy and paste it here. I am sorry I don't have the links

anymore. And I'm sorry I can't tell you anything to help you. I don't know a

lot about these. But maybe this info will help you decide what to do, or give

you a better idea about how your son is doing... I really hope it helps.

> > BUN/C RATIO 35.0 HIGH range: (12.0-20.0)

" Urea nitrogen (BUN)

Serum urea nitrogen (BUN) is increased in acute and chronic intrinsic renal

disease, in states characterized by decreased effective circulating blood

volume with decreased renal perfusion, in postrenal obstruction of urine

flow, and in high protein

intake states.

Decreased serum urea nitrogen (BUN) is seen in high carbohydrate/low protein

diets, states characterized by increased

anabolic demand (late pregnancy, infancy, acromegaly), malabsorption states,

and severe liver damage.

Creatinine

Increase in serum creatinine is seen any renal functional impairment. Because

of its insensitivity in detecting early renal failure, the creatinine

clearance is significantly reduced before any rise in serum creatinine

occurs. The renal impairment may be due to intrinsic renal lesions, decreased

perfusion of the kidney, or obstruction of the lower urinary tract.

Nephrotoxic drugs and other chemicals include:

antimony

arsenic

bismuth

cadmium

copper

gold

iron

lead

lithium

mercury

silver

thallium

uranium

aminopyrine

ibuprofen

indomethacin

naproxen

fenoprofen

phenylbutazone

phenacetin

salicylates

aminoglycosides

amphotericin

cephalothin

colistin

cotrimoxazole

erythromycin

ampicillin

methicillin

oxacillin

polymixin B

rifampin

sulfonamides

tetracyclines

vancomycin

benzene

zoxazolamine

tetrachloroethylene

ethylene

glycol

acetazolamide

aminocaproic acid

aminosalicylate

boric acid

cyclophosphamide

cisplatin

dextran (LMW)

furosemide

mannitol

methoxyflurane

mithramycin

penicillamine

pentamide

phenindione

quinine

thiazides

carbon

tetrachloride

Deranged metabolic processes may cause increases in serum creatinine, as in

acromegaly and hyperthyroidism, but dietary protein intake does not influence

the serum level (as opposed to the situation with BUN). Some substances

interfere with the colorimetric system used to measure creatinine, including

acetoacetate, ascorbic acid, levodopa, methyldopa, glucose and fructose.

Decrease in serum creatinine is seen in pregnancy and in conditions

characterized by muscle wasting.

BUN:creatinine ratio

BUN:creatinine ratio is usually >20:1 in prerenal and postrenal azotemia, and

<12:1 in acute tubular necrosis. Other intrinsic renal disease

characteristically produces a ratio between these values. "

So I guess that in your son's case BUN must be increased? Or Creatinine is

low?

I am sorry I really don't know anything about this kind of test.

Also, I found this in another page saved:

" Blood Urea Nitrogen (BUN) is waste from the liver, processed by the kidneys.

It also reflects whole carbohydrate storage, liberation, and continuation in

the liver associated with many glands (i.e., kidneys). BUN tends to rise in

dehydration and in kidney or heart failure. Prednisone and other steroids may

cause BUN to rise.

Increases in BUN can also indicate liver and/or thyroid inactivity. Decreased

BUN indicates pancreas and/or adrenal inactivity. BUN can also be elevated by

a high protein diet or recent exercise.

Uric Acid is the end product of protein digestion. The level in the blood is

dependent on liver production and kidney elimination.

Increased uric acid indicates incomplete protein digestion and/or an

over-acid kidney membrane. "

> > RBC 4.16 LOW range: (4.70-6.10)

" Red Blood Cell Count (RBC) is the count of red blood cells These cells carry

oxygen throughout the body. Too many RBCs in the bloodstream may cause slow

blood flow and compromise circulation. A low RBC may signify anemia, a

shortage of red blood cells, or hemoglobin the oxygen- carrying part of the

RBC; this usually reflects underproduction or premature destruction of the

cells. "

" The RBC count is most useful as raw data for calculation of the erythrocyte

indices MCV and MCH. Decreased RBC is usually seen in anemia of any cause

with the possible exception of thalassemia minor...... "

> > PLATELET 482 HIGH range: (140-440)

" Platelets (PT) are an element of the blood that are important for blood

clotting. They are formed in the bone marrow. Too many platelets may cause

" sludging " of the blood flow. Bruising can be evident at higher counts "

" Thrombocytosis is seen in many inflammatory disorders and myeloproliferative

states, as well as in acute or chronic blood loss, hemolytic anemias,

carcinomatosis, status post-splenectomy, post- exercise, etc. "

I realize this may confuse you more than help you, but I really don't know

how else to help you.

Valentina

March 6, 2002

RBC low I'm pretty sure means he is anemic (needs iron supplementing) to build

red blood cells.

[ ] test results

Can anyone help me decipher these test results on my 5 year old son?

BUN/C RATIO 35.0 HIGH range: (12.0-20.0)

RBC 4.16 LOW range: (4.70-6.10)

PLATELET 482 HIGH range: (140-440)

Thanks in advance. )

Kim

" Bradley's Mom "

http://help-bradley.tripod.com

August 12, 2002

Hi Al,

Although I'm glad your pulmonary function tests turned out normal, I know

you're frustrated in that you still don't have an answer for your breathing

difficulties. I'm sure you are under a lot of extra stress from this, but

be assured that we are all with you in spirit and in prayer. Hopefully you

will have an answer soon.

Hugs,

Carol

[ ] Test Results

Hi friends,

I got my results back and my pulmonary function tests were all

normal. As usual, I have stumped my doctors again LOL. Although I see

my Rheumatologist Thursday, my PCP ordered an echocardiogram which I

will have done at the hospital next week. I am hopeful my heart is

fine, but need to figure out what is winding me and making me feel so

sluggish from time-to-time in addition to RA fatigue.

Needless to say, this has increased my stress a bit but I know I must

stay as optomistic as possible and take this one step at a time.

Thank you all for being there throughout this. I am hopeful it will

be figured out very soon.

My love to all,

Al in IL

August 12, 2002

Hi Carol,

Thank you very much for the kind words. They really mean a lot to me

during this stressful time.

Hugs,

Al

> Hi Al,

>

> Although I'm glad your pulmonary function tests turned out normal,

I know

> you're frustrated in that you still don't have an answer for your

breathing

> difficulties. I'm sure you are under a lot of extra stress from

this, but

> be assured that we are all with you in spirit and in prayer.

Hopefully you

> will have an answer soon.

>

> Hugs,

> Carol

>

> [ ] Test Results

>

> Hi friends,

>

> I got my results back and my pulmonary function tests were all

> normal. As usual, I have stumped my doctors again LOL. Although I

see

> my Rheumatologist Thursday, my PCP ordered an echocardiogram which I

> will have done at the hospital next week. I am hopeful my heart is

> fine, but need to figure out what is winding me and making me feel

so

> sluggish from time-to-time in addition to RA fatigue.

>

> Needless to say, this has increased my stress a bit but I know I

must

> stay as optomistic as possible and take this one step at a time.

>

> Thank you all for being there throughout this. I am hopeful it will

> be figured out very soon.

>

> My love to all,

>

> Al in IL

>

August 12, 2002

Al:

It's a double edged sword, isn't it? To know that the

pulmonary function tests are normal is great news, but

still not know what is causing the problem must be

very frustrating and stressful to you. I hope that

they find out what is causing your breathing distress

soon.

Kathe in CA

__________________________________________________

August 12, 2002

Hi Kathe,

Yes it is. I am quite happy with the results but alittle nervous

regarding what's going on. It will be interesting to see what my

rheumy thinks this Thursday and what the results of the echo-

cardiogram are.

Thanks.

Al in IL

> Al:

>

> It's a double edged sword, isn't it? To know that the

> pulmonary function tests are normal is great news, but

> still not know what is causing the problem must be

> very frustrating and stressful to you. I hope that

> they find out what is causing your breathing distress

> soon.

>

> Kathe in CA

>

> __________________________________________________

>

April 17, 2003

HOORAY, JUDI !!!!!!!!!!!!!!!!!!!!!!!!!!!! That is most wonderful news!

Hopefully the Dr. will get the situation under control now.

Love you,

Carol

[ ] Test results

Good evening everyone,

Well, I got my biopsy results this afternoon. No lymphoma!!! I was

so excited I nearly jumped off the table. The lump in my breast was

an infected lymph node and the others were angiolipomas. Not your

garden variety from what I understand, hence their painfulness. I

have several more that need to be removed as they are in

uncomfortable areas and getting larger. I asked him if I could

get " frequent flier miles. " He says we will wait on further

surgeries until these have healed up and the infections are gone.

Had a slight setback last night, when a completely idiotic person we

know (who also knew that I had some painful areas on my arm) punched

me in the arm and opened up one incision. If I hadn't been so busy

crying I would have kicked him in the nuts.

But the most important thing is, the surgeon asked me if I had ever

heard of Dercum's disease! Just the thing I have been researching,

and he is going to send a packet of information and my biopsies to

the IU rheumatology dept. so they are waiting for me, and a copy for

me to take with me " just in case. " It's not exactly the disease I

would choose to have, but at least I have finally found the name of

my enemy and can face him down. Ugly brute, too. Apparently my SED

rate was pretty high too, from the preop blood tests, so that adds to

the picture.

So now I wait until May 12, when I go to IU, with no meds. except my

Tylenol PM. He wrote a scrip for my aqua therapy so my insurance

will cover it for now, as that is about the only thing that gives me

any relief.

OK, and a, here's a new one to add to the list, as it is an

autoimmune disease, according to the surgeon.

To you all, a blessed Good Friday and may the joys of the Easter

Resurrection bring you renewed hope--I know it will me.

Peace and grace,

Judi

April 18, 2003

LOL, Kathi! I don't believe that Judi was referring to her husband,

LOL!!! Yes, I'd pay to see that!

Re: [ ] Test results

> Hurrah...Judi sounds like you had a forehead whiper

> day....I am assuming you guys were playing...I

> hope.....anyways when he goes to sleep ...SUPER GLUE

> if you know what I mean ...last much longer than a

> kick.....so glad you got some good news......kathi in

> OK

> --- mormar46 <mormar46@...> wrote:

> > Good evening everyone,

> >

> > Well, I got my biopsy results this afternoon. No

> > lymphoma!!! I was

> > so excited I nearly jumped off the table. The lump

> > in my breast was

> > an infected lymph node and the others were

> > angiolipomas. Not your

> > garden variety from what I understand, hence their

> > painfulness. I

> > have several more that need to be removed as they

> > are in

> > uncomfortable areas and getting larger. I asked him

> > if I could

> > get " frequent flier miles. " He says we will wait on

> > further

> > surgeries until these have healed up and the

> > infections are gone.

> > Had a slight setback last night, when a completely

> > idiotic person we

> > know (who also knew that I had some painful areas on

> > my arm) punched

> > me in the arm and opened up one incision. If I

> > hadn't been so busy

> > crying I would have kicked him in the nuts.

> >

> > But the most important thing is, the surgeon asked

> > me if I had ever

> > heard of Dercum's disease! Just the thing I have

> > been researching,

> > and he is going to send a packet of information and

> > my biopsies to

> > the IU rheumatology dept. so they are waiting for

> > me, and a copy for

> > me to take with me " just in case. " It's not exactly

> > the disease I

> > would choose to have, but at least I have finally

> > found the name of

> > my enemy and can face him down. Ugly brute, too.

> > Apparently my SED

> > rate was pretty high too, from the preop blood

> > tests, so that adds to

> > the picture.

> >

> > So now I wait until May 12, when I go to IU, with no

> > meds. except my

> > Tylenol PM. He wrote a scrip for my aqua therapy so

> > my insurance

> > will cover it for now, as that is about the only

> > thing that gives me

> > any relief.

> >

> > OK, and a, here's a new one to add to the

> > list, as it is an

> > autoimmune disease, according to the surgeon.

> >

> > To you all, a blessed Good Friday and may the joys

> > of the Easter

> > Resurrection bring you renewed hope--I know it will

> > me.

> >

> > Peace and grace,

> > Judi

April 18, 2003

Congratulations, Judi! What a relief.

I'm also glad that you finally know what is causing all of that pain,

strange bruising, and other troubling symptoms.

I don't know if you've seen this one on Dercum's, but it is very

interesting:

http://dercums_data.tripod.com/brorson.html

[ ] Test results

> Good evening everyone,

>

> Well, I got my biopsy results this afternoon. No lymphoma!!! I was

> so excited I nearly jumped off the table. The lump in my breast was

> an infected lymph node and the others were angiolipomas. Not your

> garden variety from what I understand, hence their painfulness. I

> have several more that need to be removed as they are in

> uncomfortable areas and getting larger. I asked him if I could

> get " frequent flier miles. " He says we will wait on further

> surgeries until these have healed up and the infections are gone.

> Had a slight setback last night, when a completely idiotic person we

> know (who also knew that I had some painful areas on my arm) punched

> me in the arm and opened up one incision. If I hadn't been so busy

> crying I would have kicked him in the nuts.

>

> But the most important thing is, the surgeon asked me if I had ever

> heard of Dercum's disease! Just the thing I have been researching,

> and he is going to send a packet of information and my biopsies to

> the IU rheumatology dept. so they are waiting for me, and a copy for

> me to take with me " just in case. " It's not exactly the disease I

> would choose to have, but at least I have finally found the name of

> my enemy and can face him down. Ugly brute, too. Apparently my SED

> rate was pretty high too, from the preop blood tests, so that adds to

> the picture.

>

> So now I wait until May 12, when I go to IU, with no meds. except my

> Tylenol PM. He wrote a scrip for my aqua therapy so my insurance

> will cover it for now, as that is about the only thing that gives me

> any relief.

>

> OK, and a, here's a new one to add to the list, as it is an

> autoimmune disease, according to the surgeon.

>

> To you all, a blessed Good Friday and may the joys of the Easter

> Resurrection bring you renewed hope--I know it will me.

>

> Peace and grace,

> Judi

April 18, 2003

Judi!!

I am so happy that it is not lymphoma. What a blessing. You should

have kicked that guy where the sun doesn't shine. If I was there I

would have happily done it for you.

I am sorry that you are now faced with a new disease, but considering

the alternative...

Have a great Easter.

Love and hugs,

Alan

> Good evening everyone,

>

> Well, I got my biopsy results this afternoon. No lymphoma!!! I was

> so excited I nearly jumped off the table. The lump in my breast

was

> an infected lymph node and the others were angiolipomas. Not your

> garden variety from what I understand, hence their painfulness. I

> have several more that need to be removed as they are in

> uncomfortable areas and getting larger. I asked him if I could

> get " frequent flier miles. " He says we will wait on further

> surgeries until these have healed up and the infections are gone.

> Had a slight setback last night, when a completely idiotic person

we

> know (who also knew that I had some painful areas on my arm)

punched

> me in the arm and opened up one incision. If I hadn't been so busy

> crying I would have kicked him in the nuts.

>

> But the most important thing is, the surgeon asked me if I had ever

> heard of Dercum's disease! Just the thing I have been researching,

> and he is going to send a packet of information and my biopsies to

> the IU rheumatology dept. so they are waiting for me, and a copy

for

> me to take with me " just in case. " It's not exactly the disease I

> would choose to have, but at least I have finally found the name of

> my enemy and can face him down. Ugly brute, too. Apparently my

SED

> rate was pretty high too, from the preop blood tests, so that adds

to

> the picture.

>

> So now I wait until May 12, when I go to IU, with no meds. except

my

> Tylenol PM. He wrote a scrip for my aqua therapy so my insurance

> will cover it for now, as that is about the only thing that gives

me

> any relief.

>

> OK, and a, here's a new one to add to the list, as it is

an

> autoimmune disease, according to the surgeon.

>

> To you all, a blessed Good Friday and may the joys of the Easter

> Resurrection bring you renewed hope--I know it will me.

>

> Peace and grace,

> Judi

April 18, 2003

Judi,

Prayers do work in large and small amounts! Great news and will now offer

prayers of thanks for diagnosis and strength to cope with the new problem.

Gentle, tender, angel hugs, my friend,

Debs in FL

December 8, 2003

Hi Jess --

My son's tests were very much like your daughter's. Everything was in the " high

normal " or " low normal " range. Only one of his candida titres was elevated -

and only in the " equivocal " range at that...and he had very severe thrush as a

baby. His HHV-6 came out in " high normal " range. Yet, treatment, including

antifungals and antifungals, has borne out that there is both viral and fungal

involvement in my son's case. On the lab report, the normal range for ferritin

is given as 36-84, not 3-50, but in any case, my son's was 13; very low.

One thing that's important to keep in mind is that the lab tests are really a

guide to how the entire immune system is functioning; individual test results

are not as important as the entire picture.

Donna

Test results

First, I want to thank everyone for being so responsive to my

questions. I can't tell you how much it helps. While waiting to

start the protocol I am anxious, impatient, hopeful, excited and

very afraid that I won't see any improvements. It's nice to have

others who understand.

I just got her test results back(over the phone,so I'm not 100% sure

of the numbers as they are not in front of me). This is what I was

told:

1. The only glaring abnormality is her HHV-6 - normal is under 10

hers is 80.

For these below, I don't remember the exact range numbers, so I'm

approximating to give you an idea. Please don't think these ranges

are correct.

2. Ferratin (spelling??) is very low, but still in normal range. If

normal range is 3-50, her's is 6. Which I'm told while still

technically in normal range is very abnormal and very low for a

growing almost four year old.

3. Her immune suppressors are very low, but still in normal

range. If normal was 10 to 80, her's is 14.

4. Her other immune cells (Cycl-something, sorry really new to

this) are extremely high, but yet still in normal range. This is

what I was told - if normal range is 20 to 60 Her's is 59. I was

told that these were especially high considering the range my lab

used was an adult range and not one for a 4 year old.

I am concerned that while this shows that something is off in her

body, nothing is " through the roof " except for HHV-6. (Never thought

I'd want bad test results) Did any of you have comparable test

results and if so how did your child fare on the protocol.

Additionally, her candida test came back negative (I was already

told that candida tests are unreliable), but she had thrush as an

infant which would make it highly unlikely that she doesn't have any

antibodies in her system. She also gets a very bad and persistant

rash on her buttocks which is likely yeast (but who knows). Did

anyone have a negative candida test, yet have die off and

improvement

with anti-fungals.

Thanks,

Jess

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

December 8, 2003

Thank you, I'm just getting concerned that maybe this wasn't the

right path. I guess I was expecting that I'd get ridiculous

readings. I'm sure you understand, you get so hopeful, but you don't

want to get your hopes up. I guess we have to get our hopes up or

else we'd never try anything. I appreciate your supportive response.

> Hi Jess --

>

> My son's tests were very much like your daughter's. Everything

was in the " high normal " or " low normal " range. Only one of his

candida titres was elevated - and only in the " equivocal " range at

that...and he had very severe thrush as a baby. His HHV-6 came out

in " high normal " range. Yet, treatment, including antifungals and

antifungals, has borne out that there is both viral and fungal

involvement in my son's case. On the lab report, the normal range

for ferritin is given as 36-84, not 3-50, but in any case, my son's

was 13; very low.

>

> One thing that's important to keep in mind is that the lab tests

are really a guide to how the entire immune system is functioning;

individual test results are not as important as the entire picture.

>

> Donna

> Test results

>

> First, I want to thank everyone for being so responsive to my

> questions. I can't tell you how much it helps. While waiting to

> start the protocol I am anxious, impatient, hopeful, excited and

> very afraid that I won't see any improvements. It's nice to have

> others who understand.

>

> I just got her test results back(over the phone,so I'm not 100%

sure

> of the numbers as they are not in front of me). This is what I

was

> told:

>

> 1. The only glaring abnormality is her HHV-6 - normal is under

10

> hers is 80.

>

> For these below, I don't remember the exact range numbers, so

I'm

> approximating to give you an idea. Please don't think these

ranges

> are correct.

>

> 2. Ferratin (spelling??) is very low, but still in normal

range. If

> normal range is 3-50, her's is 6. Which I'm told while still

> technically in normal range is very abnormal and very low for a

> growing almost four year old.

>

> 3. Her immune suppressors are very low, but still in normal

> range. If normal was 10 to 80, her's is 14.

>

> 4. Her other immune cells (Cycl-something, sorry really new to

> this) are extremely high, but yet still in normal range. This is

> what I was told - if normal range is 20 to 60 Her's is 59. I was

> told that these were especially high considering the range my

lab

> used was an adult range and not one for a 4 year old.

>

> I am concerned that while this shows that something is off in

her

> body, nothing is " through the roof " except for HHV-6. (Never

thought

> I'd want bad test results) Did any of you have comparable test

> results and if so how did your child fare on the protocol.

>

> Additionally, her candida test came back negative (I was already

> told that candida tests are unreliable), but she had thrush as

an

> infant which would make it highly unlikely that she doesn't have

any

> antibodies in her system. She also gets a very bad and

persistant

> rash on her buttocks which is likely yeast (but who knows). Did

> anyone have a negative candida test, yet have die off and

> improvement

> with anti-fungals.

>

> Thanks,

>

> Jess

>

> Responsibility for the content of this message lies strictly

with

> the original author, and is not necessarily endorsed by or the

> opinion of the Research Institute.

>

December 8, 2003

We do understand! Each one of us has felt exactly the way you feel right now

(and we still go through times when we feel like just throwing in the towel).

Just keep coming to the group when you have questions, concerns, and doubts, or

just if you need encouragement, because you'll get it here!

Donna

Test results

>

> First, I want to thank everyone for being so responsive to my

> questions. I can't tell you how much it helps. While waiting to

> start the protocol I am anxious, impatient, hopeful, excited and

> very afraid that I won't see any improvements. It's nice to have

> others who understand.

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December 9, 2003

Jess,

My son's level were very similar to your child's. HHV6 was not very

high, ferritin was low, Candida was negative. He had some other

viral titers high too....are you getting a copy of the results?

Request one from your doctor.

My son had die off with both of the antivirals he was on and the

antifungal. I remember how I was glad to see his blood work coming

back abnormal (what an odd thing for a parent to say!) but then I

felt like there was something to treat!

Hang in there

> First, I want to thank everyone for being so responsive to my

> questions. I can't tell you how much it helps. While waiting to

> start the protocol I am anxious, impatient, hopeful, excited and

> very afraid that I won't see any improvements. It's nice to have

> others who understand.

>

> I just got her test results back(over the phone,so I'm not 100%

sure

> of the numbers as they are not in front of me). This is what I

was

> told:

>

> 1. The only glaring abnormality is her HHV-6 - normal is under 10

> hers is 80.

>

> For these below, I don't remember the exact range numbers, so I'm

> approximating to give you an idea. Please don't think these ranges

> are correct.

>

> 2. Ferratin (spelling??) is very low, but still in normal range.

If

> normal range is 3-50, her's is 6. Which I'm told while still

> technically in normal range is very abnormal and very low for a

> growing almost four year old.

>

> 3. Her immune suppressors are very low, but still in normal

> range. If normal was 10 to 80, her's is 14.

>

> 4. Her other immune cells (Cycl-something, sorry really new to

> this) are extremely high, but yet still in normal range. This is

> what I was told - if normal range is 20 to 60 Her's is 59. I was

> told that these were especially high considering the range my lab

> used was an adult range and not one for a 4 year old.

>

> I am concerned that while this shows that something is off in her

> body, nothing is " through the roof " except for HHV-6. (Never

thought

> I'd want bad test results) Did any of you have comparable test

> results and if so how did your child fare on the protocol.

>

> Additionally, her candida test came back negative (I was already

> told that candida tests are unreliable), but she had thrush as an

> infant which would make it highly unlikely that she doesn't have

any

> antibodies in her system. She also gets a very bad and persistant

> rash on her buttocks which is likely yeast (but who knows). Did

> anyone have a negative candida test, yet have die off and

> improvement

> with anti-fungals.

>

> Thanks,

>

> Jess

December 9, 2003

If you saw some die off with Nystatin that could be a good sign.

And you might want to consider another antifungal and a trial of one

may reveal another die off.

My son had high viral titers, but the HHV6 number was not that high

on the initial test. His level went from 1:40 to 1:1280 after 3

months on Valtrex. It is now at 1:20. It is common for the HHV6

numbers to go up once starting treatment, then going down with

continued treatment.

HTH

--- In , Anne-Marie Stanton-Ife <amsife@o...>

wrote:

> Hi - I have just got a batch of tests back too and nothing really

showed

> up - all viral titres within or just within the normal range and

not

> even one rogue virus. Like you, my son (4.0) has an obvious yeast

issue

> with obvious die-off when he started Nystatin but negative

candida. My

> ped says stop testing and work with what you've got (i.e give up).

While

> I don't want to go looking for illnesses, the model makes too

much

> sense to me and what we have lived through with his pattern of

> regression for me to let go. Other things we have tested for have

been

> the casein/gluten test (which was positive and he's been on the

diet for

> over a year) and metals, which give him a high toxicity profile,

and I

> can't decide what action to take here. What now - are these tests

set in

> stone? (I can't afford to cross-test with another lab). Has anyone

> started an the antiviral /paxil path without a batch of test

results

> screaming out ? Any pointers at all would be HUGELY

appreciated. We

> are located in Greece, where nobody has heard of any of this, and

> doesn't really seem interested either. Apart from that is

doing

> very well - year 2 of ABA - shadowed daily attendance at

mainstream

> nursery - has started learning independently and reads and does

maths

> with astonishing ease, way over age level. Speech is still

dealyed. He

> understands most things, but still only asks questions once in a

blue

> moon and is often hard to engage. That elusive piece of the

puzzle....

> Many thanks

> Anne-Marie

December 9, 2003

<<<< What now - are these tests set in

stone? (I can't afford to cross-test with another lab). Has anyone

started an the antiviral /paxil path without a batch of test results

screaming out ? <<<

Hi Anne-Marie --

Yes, yes, yes. My son's tests for viral issues were in the normal range and

viral treatment (with subsequent testing -- and improvement in my son) has borne

out that he does indeed have a viral issue. Remember, these are antibody tests.

Some children with ' immune systems are so compromised that they are not

producing enough antibodies to show up on a test! There are parents on this

list whose children had *perfectely normal* tests results in every area,

but as their immune systems improved, the testing started to reflect where the

abnormalities existed. Individual tests results are not as important as the

entire clinical picture.

Hope that helps.

Donna

December 9, 2003

Anne-Marie,

The only things that were flagged as abnormal in my son's first labs 2 years

ago were his antigliadin antibodies and his sed rate (the sed rate was a

little high but not extremely high). His WBC was a bit low but still in the

normal range, and Dr. G commented on that possibly indicating a viral

connection (even though none of the viral tests had come back positive).

The WBC count has been a continued focus in our case, even though it is

usually right at the low end of " normal " .

The labs are not the only thing Dr. G looks at... the child's own medical

history and family history also weigh heavily. The fact that my child had

hypotonia (low muscle tone) and HORRIBLE motor skills (at age 6 when he

started with Dr. G he could even not blow his nose) was, Dr. Goldberg said,

an indicator of possible underlying viral involvement. Dr. Goldberg was

right. Within a couple of months of starting the protocol, my son could

blow his nose. After being on Valtrex (and other meds) for a while, my

son's muscle tone NORMALIZED. He had never had reflexes and he developed

normal reflexes. To quote the pediatric specialist he was seeing " This just

doesn't happen! " . She called Dr. Goldberg and after the conversation, she

started referring some of her patients in Indiana out to see Dr. Goldberg in

CA.

The whole picture is a puzzle and it manifests in different ways in

different kids. That is part of why it has been so hard to figure out.

Hang in there... there is great hope for these children.

Caroline

> On 12/9/03 12:48 AM, " Anne-Marie Stanton-Ife " <amsife@...> wrote:

> Has anyone

> started an the antiviral /paxil path without a batch of test results

> screaming out ?

December 9, 2003

That's what I was told about her Candida being negative. That since

she had thrush as an infant it is impossible for her not to have any

antibodies in her system. So either the test was wrong or she has a

fungal infection and her body is not doing anything to fight it.

Can you tell me about die off. I was told that since her HHV-6 is

high, the first thing will be anti-virals. I've read in post about

die off with anti-fungals, but I don't know if I saw it relating to

anti-virals. Is there a difference in reaction. What were some of

the things all of you saw? And is there anyone who saw immediate

progress?

> <<<< What now - are these tests set in

> stone? (I can't afford to cross-test with another lab). Has anyone

> started an the antiviral /paxil path without a batch of test

results

> screaming out ? <<<

>

> Hi Anne-Marie --

>

> Yes, yes, yes. My son's tests for viral issues were in the normal

range and viral treatment (with subsequent testing -- and

improvement in my son) has borne out that he does indeed have a

viral issue. Remember, these are antibody tests. Some children

with ' immune systems are so compromised that they are not

producing enough antibodies to show up on a test! There are parents

on this list whose children had *perfectely normal* tests

results in every area, but as their immune systems improved, the

testing started to reflect where the abnormalities existed.

Individual tests results are not as important as the entire clinical

picture.

>

> Hope that helps.

> Donna

>

December 9, 2003

<<<That's what I was told about her Candida being negative. That since