Re:Diagnosis frustration (Originally yeast overgrowth)

[Guest guest]

I don't know of your situation, but let just say some of my experiences.

Most lab tests are inaccurate or numerous times my docs read the labs

incorrectly. Luckily I started asking for the lab tests myself, and then told

the doc

how to read them and even the labs were called to verify. This is many

different docs. This is for real. Also, I research the lab tests to learn if

they are considered accurate or useful. Most are considered useless. Thus, we

have to become very involved in order to get our health back. Sad, but

true. I actually research which tests are considered good, and then ask the

doc

to order those, often I have to pay much out of pocket, but at least its

accurate. Igenex and Fry labs are the only labs that one considers with enough

accuracy to be worth the time and money. That's what I have learned from the

forums and other research. The CD 57 test has to be done in the morning and

sent out that day, overnight, to LabCorp. That is what I know of the CD 57.

If you do Fry labs, do both the antigen and the analysis test because you

can be positive on one and not the other.

Heidi N

hm. i wonder why my LLMD has not suggested FISH since on my last visit

my symptom check list showed babesia symptoms. (i'll ask the LL

neuropsychiatrist about FISH). i wonder if he's given up on tests for

me since all my tests have come back negative (ELISA, Western Blot and

CD57). I wonder if he doubts i even have anything. the only thing

that has come up with results consistent with lyme is a SPECT brain

scan. I don't know about my MRI yet. my CBC and metabolic panel blood

tests have also come back fine so he doesn't even want lab work from

me for our next visit.

today i am too frustrated and overwhelmed to deal with any of this.

I've sort of hit the wall....

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

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000000001)

[Guest guest]

Igenex and Fry labs are very good labs. But you should add Central

Florida Research Inc. to this list. From the research and talking to

Tom Long (Pres.) of the lab, the new antigen test that they have

developed seems to be a gaint step in the right direction.CFR " It may

be the best current method for identifying the pressence of the

organism in the patient today. " They are very dedicated to helping

people suffering with Lyme. Go to their web page or better yet call and

talk to Tom.(863-956-3538) He is a world of information.

[Guest guest]

>

> I don't know of your situation, but let just say some of my

experiences.

> Most lab tests are inaccurate or numerous times my docs read the

labs

> incorrectly. Luckily I started asking for the lab tests myself,

and then told the doc

> how to read them and even the labs were called to verify. This is

many

> different docs. This is for real. Also, I research the lab tests

to learn if

> they are considered accurate or useful. Most are considered

useless. Thus, we

> have to become very involved in order to get our health back.

Sad, but

> true. I actually research which tests are considered good, and

then ask the doc

> to order those, often I have to pay much out of pocket, but at

least its

> accurate. Igenex and Fry labs are the only labs that one

considers with enough

> accuracy to be worth the time and money. That's what I have

learned from the

> forums and other research. The CD 57 test has to be done in the

morning and

> sent out that day, overnight, to LabCorp. That is what I know of

the CD 57.

> If you do Fry labs, do both the antigen and the analysis test

because you

> can be positive on one and not the other.

>

> Heidi N

>

>

> hm. i wonder why my LLMD has not suggested FISH since on my last

visit

> my symptom check list showed babesia symptoms. (i'll ask the LL

> neuropsychiatrist about FISH). i wonder if he's given up on tests

for

> me since all my tests have come back negative (ELISA, Western Blot

and

> CD57). I wonder if he doubts i even have anything. the only thing

> that has come up with results consistent with lyme is a SPECT brain

> scan. I don't know about my MRI yet. my CBC and metabolic panel

blood

> tests have also come back fine so he doesn't even want lab work

from

> me for our next visit.

>

> today i am too frustrated and overwhelmed to deal with any of

this.

> I've sort of hit the wall....

>

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

> (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?

ncid=aolhom00030000000001)

>

>

>

[Guest guest]

Hi Heidi! I'm so glad to hear that you have taken the bull by the horns by doing

research and asking for the most accurate tests. I too am becoming very educated

on Lyme and the co-infections. I do have a couple of questions for you, if you

can please try to answer. The first question is where is Fry Laboratories? This

was the 2nd time I've heard the name of Fry Labs, but I can't seem to find

anything referencing Fry Labs on any of the major Lyme websites such as the

National LDA. Do you have the website link or other info you can forward to me

regarding Fry Labs? Do you think Fry Labs are a good respectable lab, as is

IGenex, for Lyme and co-infection testing.

The other question is in regard to your statement below. Where did you come

across info on the CD57 test and what time of the day it should be drawn? What

did your information source say in regard to why it should be drawn in the

morning?

One of the main reasons I'm asking about this is because my primary doc had the

blood drawn at the local hospital while I was still and inpatient, and the

hospital sent my blood to Labcorp to process the CD57 test. Labcorp did some

funky formula to come to their " estimate " of the CD57 number. Even my LLMD

couldn't figure out what Labcorp did. My LLMD is mailing me a new order for a

new CD57 test and I'm going to FEDEX my blood samples to the same lab (Clinical

Pathology Laboratories that my LLMD used for my first CD57 test. So if the

time of day that the blood samples are collected makes a significant difference

in the results, I will keep that in mind when I have my new CD57 blood samples

drawn. Do you know whether having the blood drawn in the morning makes the CD57

test results higher or lower than the results would be if one would have the

CD57 blood samples drawn at any other time in the day? Can you give me more

detailed information on the CD57? Thank you in advance.

Barb

" The CD 57 test has to be done in the morning and

sent out that day, overnight, to LabCorp. That is what I know of the CD 57. "

---- Ambitionn01@... wrote:

> I don't know of your situation, but let just say some of my experiences.

> Most lab tests are inaccurate or numerous times my docs read the labs

> incorrectly. Luckily I started asking for the lab tests myself, and then

told the doc

> how to read them and even the labs were called to verify. This is many

> different docs. This is for real. Also, I research the lab tests to learn

if

> they are considered accurate or useful. Most are considered useless. Thus,

we

> have to become very involved in order to get our health back. Sad, but

> true. I actually research which tests are considered good, and then ask the

doc

> to order those, often I have to pay much out of pocket, but at least its

> accurate. Igenex and Fry labs are the only labs that one considers with

enough

> accuracy to be worth the time and money. That's what I have learned from the

> forums and other research. The CD 57 test has to be done in the morning and

> sent out that day, overnight, to LabCorp. That is what I know of the CD 57.

> If you do Fry labs, do both the antigen and the analysis test because you

> can be positive on one and not the other.

>

> Heidi N

>

>

> hm. i wonder why my LLMD has not suggested FISH since on my last visit

> my symptom check list showed babesia symptoms. (i'll ask the LL

> neuropsychiatrist about FISH). i wonder if he's given up on tests for

> me since all my tests have come back negative (ELISA, Western Blot and

> CD57). I wonder if he doubts i even have anything. the only thing

> that has come up with results consistent with lyme is a SPECT brain

> scan. I don't know about my MRI yet. my CBC and metabolic panel blood

> tests have also come back fine so he doesn't even want lab work from

> me for our next visit.

>

> today i am too frustrated and overwhelmed to deal with any of this.

> I've sort of hit the wall....

>

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video on AOL

> Home.

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

>

>

>

[Guest guest]

The word is that Igenex is better than Florida. I and my son used Florida,

came back flat-out negative, yet we both have low CD 57's per LabCorp and

lyme coinfections per Fry. We also have had nearly every lyme symptom and herx

on lyme-killing supplements. Thus, my vote goes to Igenex at this point, but

since Florida is paid by many insurance companies, it is probably good to

try first as long as your doc is willing to order the Igenex test if the

Florida test comes back negative.

Heidi

Igenex and Fry labs are very good labs. But you should add Central

Florida Research Inc. to this list. From the research and talking to

Tom Long (Pres.) of the lab, the new antigen test that they have

developed seems to be a gaint step in the right direction.CFR " It may

be the best current method for identifying the pressence of the

organism in the patient today. " They are very dedicated to helping

people suffering with Lyme. Go to their web page or better yet call and

talk to Tom.(863-956-talk to Tom.(863-956-<WBR>3538) He i

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

[Guest guest]

I do not believe we should be accepting gossip (word of mouth) as to where to

get tested. I also do not believe we should be telling each other which test to

get because there is no 100% accurate test for Lyme on this earth, and it stands

to reason that a person would want to utilize all testing, from different labs,

if finances are available.

Antigen tests are preferable when dealing with Lyme testing because it is the

physical presence of the organism, but that does not mean you should ignore the

antibody tests either.

You are going to have to throw out of your mind the traditional get a blood

test, get a result, with these infections. If your doctor thinks that you can

only herx with Lyme, or that all these tests are 100% accurate, then you are in

trouble. These types of illnesses are rarely just about Lyme disease,

example...Babesia, Ehrlichliosis, Bartonella, Rocky Mountain Spotted Fever,

Mycoplasma pathogen infections (we are aware of 8 so far, but it is believed

there are many more), and the lovely Rickettsia bunch to worry about, HHV6, and

the list goes on. If that isn't bad enough, while chronically ill like this, we

have to worry about newly acquired or reoccurring viruses, which Mycolplasma

infections just love to invade and alter. By the way, some of the testing for

these co-infections are not the most accurate either. It is very complex and

basically Russian Roulette as to what you have.

I wish you well.

----- Original Message -----

The word is that Igenex is better than Florida. I and my son used Florida,

came back flat-out negative, yet we both have low CD 57's per LabCorp and

lyme coinfections per Fry. We also have had nearly every lyme symptom and herx

on lyme-killing supplements. Thus, my vote goes to Igenex at this point, but

since Florida is paid by many insurance companies, it is probably good to

try first as long as your doc is willing to order the Igenex test if the

Florida test comes back negative.

Heidi

[Guest guest]

It seems that none of the tests are 100% definitive. In the end the

diagnosis is clinical (history, physical exam, etc.). I feel that

these little Lyme critters are always hiding inside of our cells and

don't always present themselves for our diagnosis.

On the same day, same butterfly needle insertion, I had blood drawn

for IgeneX, Central Florida Research (CFR), and Fry Laboratories.

These results were scanned and placed in my MySpace profile " Pics "

section. My stool test results are also posted in my profile. After

navigating the the " Pics " section look for the associated album covers

of me throwing a toilet or the little blue circles from the Fry Labs

report.

http://www.myspace.com/alrightguy123

Results:

Somehow the blood sent to Central Florida Research became unusable.

Initially they had charged my credit card about $500. No report was

generated and the charge was removed.

The results from IgeneX were indeterminate. My local alternative

physician called IgeneX to ask them what the report meant and what we

should do. IgeneX suggested that we draw some more blood and have a

specific section or two reassayed for $95.

The Fry Laboratories test indicated a small amount of bartonella spp.

My out of state Lyme Literate Medical Doctor, after reviewing the

blood work done by two local neurologists, who diagnosed me with

Multiple Sclerosis (MS),my two MRI reports, an EEG (EKG?), and hands

on physical exam suggested a plan.

Everyone has bartonella, so that part of the Fry Laboratories test

didn't mean much. Based on the entire set of data, the LLMD prescribed

14 tubes worth of blood tests, a stool test, 100mg doxycline tablets

twice per day for three months and an MRI.

Last week the doxycycline was started. I began to bloat like the dead

rotting body I feel like I've become. Just today (March 20, 2008) I

cut the doxycline down to one 100mg tablet per day. (The LLMD said

that if I had peculiar reactions to cut the dose back).

Conclusion:

None of the tests are definitive. Get a LLMD, that treats this sneaky

disease on a regular basis, as an independent eye to review the case.

We can not be the lead investigator AND the chief lab rat. If the

LLMD wants a test from ACME Lyme associates, then that's the test to get.

With many projects in life, the science is easy. The human dynamic is

the challenging part. When interviewing physicians, some of these

people make up for the lack of knowledge by increasing the size of

their egos. The inflated ego can interfere with the diagnosis. This

is why we need to study up on the disease and then grade what the

physician and determine if they need to be kicked to the side of the road.

>

> The word is that Igenex is better than Florida. I and my son used

Florida,

> came back flat-out negative, yet we both have low CD 57's per

LabCorp and

> lyme coinfections per Fry. We also have had nearly every lyme

symptom and herx

> on lyme-killing supplements. Thus, my vote goes to Igenex at this

point, but

> since Florida is paid by many insurance companies, it is probably

good to

> try first as long as your doc is willing to order the Igenex test

if the

> Florida test comes back negative.

>

> Heidi

>

>

> Igenex and Fry labs are very good labs. But you should add Central

> Florida Research Inc. to this list. From the research and talking to

> Tom Long (Pres.) of the lab, the new antigen test that they have

> developed seems to be a gaint step in the right direction.CFR " It may

> be the best current method for identifying the pressence of the

> organism in the patient today. " They are very dedicated to helping

> people suffering with Lyme. Go to their web page or better yet call

and

> talk to Tom.(863-956-talk to Tom.(863-956-<WBR>3538) He i

>

>

>

> **************Create a Home Theater Like the Pros. Watch the video

on AOL

> Home.

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

>

>

>