Confused

[Guest guest]

In my experience tomatoes and zucchini have been fine

for my extremely sensitive blood sugar, but I limit

them quite a bit, as well as onions and red peppers.

I would never have any of these on the same day. I've

found that I can do 6oz of any of these and be fine.

I also have to limit stevia.

I'm not sure how they effect candida but I find that

green high fiber veggies (broccoli, spinach, green

beans, cabbage, bok choy, asparagus) give me the best

results and don't bother my candida at all.

Luv,

Debby

San , CA

--- ~wings~ <lifewithwings@...> wrote:

> Hi Bee:

>

> I've been reading the past messages, files and

> recipes. I see where

> tomatoes, zucchini and spaghetti squash have been

> ok, then termed no-

> nos and then okd (spaghetti squash seems now to be

> considered

> borderline.)

>

> What is the consensus today? Are any of these on

> your approved list now?

>

> Also, in recipes, I've seen both canned and frozen

> ingredients. Don't

> these processes (especially canning which adds NACL)

> compromise

> nutritional value? Don't we want whole, living foods

> with plenty of

> vital life (energy) still in them?

>

> Thanks, Bee!

> ~wings~

We are what we repeatedly do. Excellence, then, is not an act but a habit. We

develop it by practice. --Aristotle

My son Hunter Hudson (10/11/04) http://debbypadilla.0catch.com/hunter/

[Guest guest]

Hi, Bree, I am also seeing Dr. Cameron. I also am much confused about

treatments. I have been on the doxy for about 5 weeks now, but had

rotator cuff surgery about 2 weeks ago, so I'm not sure what's what. I

do know I don't feel great. Just so lethargic all the time. Good luck

with your treatment. Let's keep in touch.

Debbie

[Guest guest]

hi bree, doctor c is an angel. we try not to mention drs names in posts. tests

do not mean diddly squat. if you are feeling better and sometimes worse during a

die off which is called a herx for short, you are doing the right thing. the

only thing you can do is your own research and feel free asking people here for

info. you are doing the right thing. kurt

BB <bree60@...> wrote: When it comes to Lyme Disease, I know I'm

not the only one who's

confused. But I'm hoping to get some clarity on the following:

About 3 weeks ago, I went to Dr. Cameron in Mt. Kisco, NY (a

specialist and patient advocate) because I had a suspicious tick bite.

He thought I might already have Lyme Disease because of my ongoing

symptoms, and I was tested (results: negative). I'm now about 3 weeks

into 4 weeks of Doxy (300 mg./day) which, because of the tick bite, I

would take no matter what the Lyme test outome happened to be. Anyway,

I do feel better. I will go back to see Dr. Cameron in a few weeks

and will also ask him these same questions: If I feel worlds " better "

(much less achey, nauseous, fatigued, etc.), can I assume that I

do/did have Lyme Disease? If I am responding to treatment, can I make

that assumption? What is the deal with false negatives on the tests?

I'm sure this was a a high-end test & lab. I almost wish I had a

positive on the test, so that I would just KNOW.

Anyway: I'm grateful that I feel better (with a day or two of feeling

absolutely awful thrown in!), and have faith that I'm on the upswing.

Thanks,

Bree

Nyack, NY

[Guest guest]

Bree,

Lyme can be very difficult to diagnose and treat. The key in my

opinion is to find the best doctor you can that has proven experience

treating this terrible disease. I have heard good things about your

doctor.

One of the foundations for understanding the difficulties in

diagnosing and treating Lyme can be found at

http://www.ilads.org/files/burrascano_0905.pdf.

When you find the right doctor it is usually a long road, but know

that you can get better and will get better. I had it undiagnosed

for over 5 years, my wife had it and my son had it. We are now all

doing fine after getting the proper treatment.

Be well,

Nanuet, NY

>

> When it comes to Lyme Disease, I know I'm not the only one who's

> confused. But I'm hoping to get some clarity on the following:

>

> About 3 weeks ago, I went to Dr. Cameron in Mt. Kisco, NY (a

> specialist and patient advocate) because I had a suspicious tick

bite.

> He thought I might already have Lyme Disease because of my ongoing

> symptoms, and I was tested (results: negative). I'm now about 3

weeks

> into 4 weeks of Doxy (300 mg./day) which, because of the tick bite,

I

> would take no matter what the Lyme test outome happened to be.

Anyway,

> I do feel better. I will go back to see Dr. Cameron in a few weeks

> and will also ask him these same questions: If I feel

worlds " better "

> (much less achey, nauseous, fatigued, etc.), can I assume that I

> do/did have Lyme Disease? If I am responding to treatment, can I

make

> that assumption? What is the deal with false negatives on the tests?

> I'm sure this was a a high-end test & lab. I almost wish I had a

> positive on the test, so that I would just KNOW.

>

> Anyway: I'm grateful that I feel better (with a day or two of

feeling

> absolutely awful thrown in!), and have faith that I'm on the

upswing.

>

> Thanks,

>

> Bree

> Nyack, NY

>

[Guest guest]

>

> Hi every one.

>

> I have been doing the candida diet as outlined on this site for some

> months now, without getting positive results.

==>There are many things lacking in all candida diets, compared to

this one, so that is probably why you are not getting positive

results. Please re-check your foods and supplements against those

recommended.

> Then I came across Bee' Natural healing page. On that page she writes

> that some fruits can be eaten on the cadida diet and even some

grains! I thought they had to be totally eliminated on this diet for

success?

>

==>Hi. Please put your name at the end of messages for our 2 blind

members. Thanks.

==>Natural Healing is not for candida sufferers; there's a separate

section for Candida on my website. Follow the recommendations in the

Candida Section.

Bee

[Guest guest]

>

> Hi every one.

>

> I have been doing the candida diet as outlined on this site for some

> months now, without getting positive results.

> Then I came across Bee' Natural healing page. On that page she writes

> that some fruits can be eaten on the cadida diet and even some

grains!

> I thought they had to be totally eliminated on this diet for success?

>

> I am confused now, completely confused.

>

> What am I meant to be eating?

>

Hey, I think what you're talking about is a LATER stage of healing. I

got the impression from Bee's articles that as you heal, you can

gradually add back in more carbs - but that would probably much

farther down the road. Probably anyone coming to this group to

recover from candida is bad enough off that they are not ready for

that stage yet. I think Bee's website is aimed at a broader audience

than this forum; the website is for anyone to heal themselves, not

just candida sufferers.

Hope this helped, even though I'm not really the one to answer your

question.

in Tennessee

[Guest guest]

>

> I guess I am confused. The statement about yeast not being killed,

but we need to increase our immune system to keep the yeast in check.

Why do we take the anti-fungal then? What part do they play in this if

we aren't trying to kill off the yeast, just increase our immune system.

==>You could cure candida with diet and supplements alone but it takes

longer. Killing off candida overgrowth helps minimize its population

as you are building up the immune system and on Step 4 you are

implanting good bacteria (Step 4) which also kills off candida. Doing

all 3 works better and involves less time than just building up the

immune system.

> I also posted a question some days ago about increased reactions

from " safe " foods the longer Iam on the program. I can't eat onions,

cabbage or green or red peppers now without having increased symptoms.

Has anyone else experienced this?

==>That is because those food also kill off candida.

Bee

[Guest guest]

-

I have lots of your symptoms and issues too, plus major diet

restrictions and poor digestion. I also had my gallbladder removed.

It's late and I'm off to bed, but you are welcome to email me any time.

We were going to connect before your mom passed away.........as I am

another Oregon girl.

I am sorry about your mom and losing such a close one as she was,

especially when you really need the support.

I don't know if I can be of help, but I will be glad to share what I

know already in treating my own case of lyme and co-infections.

Love,

Jnanda

[Guest guest]

Hi ,

I so sorry for the loss of your mother, 'your best friend'.

I do know the feeling. I lost my mother 30 years ago when I was 20

something.

I'm glad you are posting to the group. I am alone, live alone, have

friends, but day to day and hour to hour I'm alone.

It helps me a lot to know this group is here. Sure it's a little

removed from physical support, but it is always here, and there will

always be someone to respond to you.

I cannot answer re your symptoms, someone will I'm sure.

I just want to offer my condolences and tell you, you're not alone.

Your post touched me.

You reached out to the group. And hopefully you will feel connected here.

feel free to e-mail me off group, if that is ever helpful.

regards,

ellen---

[Guest guest]

Hi , sorry for your mom...

I'm a lonely mother of a 3 year old too (no parents, nor relatives in

the same country....). It's hard to take care of a small child, the

hardest part of all, for me (because they're so sensitive to our

condition).

We both survived though. She was 1.5 when I started falling very sick.

I hope you have some friend or neighbor to help you. I also had a baby

sitter (a sort of); I took my daughter to her house and left her there

for 2-3 days a week (half day or so).

Your gall symptom pain, I just read a thread in lymenet about it. Many

people experience the same AFTER REMOVAL because of some stones inside

the ducts, it seems. You'd better read it there, lots of 1st hand info

from people with the SAME problem as yours, they gave some advice on

herbs/ products, but I didn't read them all. lymenet.org

Symptoms in the head point towards babesia & bartonella in dr. K's

opinion. Borrelia too, but basically, these 2 critters have to go

before borrelia can definitively go (in his opinion). In my case,

coinfections created most of my symptoms, I have the impression

borrelia was just MY 'co-infection' instead!!!

Bartonella caused me brain and scalp inflamation, fog, tooth pain.

Babesia horrible brain fog, horrible fatigue, horrible herxes,

temperature problem, flushes, teeth pain too.

Hope you'll find your way after this shocking event. Hubby will have to

help more. I think that dividing clearly tasks helped (this day you do

that, the other is the other etc). It takes some time to tune the

tasks, but when it happens, it helps.

Gotta go now! Read acient posts on artemisinin before you take it!

Selma

[Guest guest]

-- sorry to read about your mother.

Re your eye symptoms, I successfully treat mine by drinking mangosteen

juice, which is an anti-inflammatory juice. It's in healthfood stores and

online.

I like the Ultra brand, with 70 minerals added to it. The strongest one is

called Xango -- it's sold multi-level. All eye symptoms went away within 24

hours -- floaters, eye muscle pain, sensitivity to light and blurred vision.

We

also need to drink a lot of water with it too. -- Robin

**************************************See AOL's top rated recipes

(http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Hi,

I know how you feel. This kind of thing has made me want to get a

petri dish, with modified medium or whatever they use for

cultures. Then I would wash my finger, sterilze it and shed some

blood on the medium and culture my own Borrelia to bring to the

doc. Hehe.

I have had numerous equivocal tests over the past few months, and it

is annoying. A new band comes, and old one goes. You may know this,

but 41 is flagellin and quite nonspecific. I think 39 is a protein

of Bb flagellin, and more specific than 41. 31 is OspA and quite

specific to Lyme.

I have had the following tests:

June, Labcorp: 23,41 IgM, 28, 41 IgG

July, Quest: 41 IgG

November, Quest: 41 IgM, 41IgG

January, Quest: 28, 41, 66 IgG

Last week, Quest: C6 ELISA positive, 41 IgG

(it is sad to say that I now know my test results by heart, didn't

read a think to write the above)

I have not tried Igenex yet, as I have not seen a doc who is open-

minded towards them. I will in a month, though. I talked to Nick at

Igenex though, and he was helpful. Anyone know if the moderator of

this group is married, or related to him?

I wish I also had a smoking gun, or a way to rule out Lyme for sure.

Silas

On Feb 27, 2008, at 8:22 AM, teresa91567 wrote:

> I recieved my lyme results over the phone by my llmd's nurse. I

> tested Igenex negative on IGM AND IGG, but bands IGM 31,41 POS. IGG

> 39,

> 41 POS. she also said I had a bunch of indetermin.I am still

> confused ,

> still feel sick . I will refine this post when I get the actual + and

> minuses. Wish I had a smoking gun. Thanks

>

>

>

[Guest guest]

,

Dont fret. Lyme tests(no matter how good they supposidly are), are pretty much

useless. I definitly know. Ive had at least a dozen or more done.

Its definitly confusing though =/

Your gut is the best thing to go by!!

Love and Energies.

Kayla

teresa91567 <teresa91567@...> wrote:

I recieved my lyme results over the phone by my llmd's nurse. I

tested Igenex negative on IGM AND IGG, but bands IGM 31,41 POS. IGG 39,

41 POS. she also said I had a bunch of indetermin.I am still confused ,

still feel sick . I will refine this post when I get the actual + and

minuses. Wish I had a smoking gun. Thanks

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Your Lyme is positive hun.... totally positive... the 41 band shows up when the

test has found the flagella (tail) of the Lyme bacteria... present... It is

confusing..... but you do have Lyme... sorry

LLRN

[ ] Confused

I recieved my lyme results over the phone by my llmd's nurse. I

tested Igenex negative on IGM AND IGG, but bands IGM 31,41 POS. IGG 39,

41 POS. she also said I had a bunch of indetermin.I am still confused ,

still feel sick . I will refine this post when I get the actual + and

minuses. Wish I had a smoking gun. Thanks

[Guest guest]

Hi ,

I want to jump in here on my own behalf because I also had a positive on band

41, I think it was ++ if I remember correctly. Anyway, I asked my Lyme friendly

doctor about it and he said, that's normal, everyone has that one. But I've

heard more than one person here say basically what you are saying and I

definitely believe you guys have more knowledge about this than he does. He's a

great doctor but still learning about Lyme and is no expert at this point. Do

you know if this is in writing anywhere so I could show him this info about band

41? I am still on a waiting list to see an LLMD and this other doctor will not

give me a dx or treat me for some reason. I even tested positive for Babesia

Duncani and he still has yet to treat me or even comment on the test results.

I'm very frustrated with him and I think I may done with him.

Anyway, if you know of anything in writing maybe I will go back to see him and

see what happens.

Thank you!!

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

I had saved this info in my files because it explains things the best. It is

long but very informative. I highlighted the part about specific bands for

lyme if you just want to skip down. ~Janet

Explanation of the Lyme Disease Western Blot

by

Carl Brenner

Inquiries about various issues relating to Western blot (WB) testing are

frequently posted to the Lyme disease discussion groups on the Internet. Among

the most commonly asked questions are:

What laboratory techniques are used to carry out the assay?

What exactly is being measured?

What is a " band " ?

How are the results interpreted?

What are the CDC criteria for a " positive " test? Although some of the

medical jargon associated with immunology can be a little overwhelming, the

scientific principles behind these tests are not difficult to grasp. The

following

article is offered as a primer in the techniques and interpretation of Western

blotting, and should help most patients navigate their way through some of

the medical and scientific terminology associated with the assay.

First of all, it should be noted that the Western blot is usually performed

as a follow-up to an ELISA test, which is the most commonly employed initial

test for Lyme disease. " ELISA " is an acronym for " enzyme-linked immunosorbent

assay. " There are ELISA tests and Western blots for many infectious agents;

for example, the usual testing regime for HIV is also an initial ELISA

followed by a confirmatory Western blot.

Both the ELISA and the Western blot are " indirect " tests -- that is, they

measure the immune system's response to an infectious agent rather than looking

for components of the agent itself.

In a Lyme disease ELISA,

antigens (proteins that evoke an immune response in humans) from Borrelia

burgdorferi (Bb) are fixed to a solid-phase medium and

incubated with diluted preparations of the patient's serum. If antibodies to

the organism are present in the patient's blood, they will bind to the

antigen.

These bound antibodies can then be detected when a second solution, which

contains antibodies to human antibodies, is added to the preparation. Linked to

these second antibodies is an enzyme which changes color when a certain

chemical is added to the mix. Although the methodology is somewhat complicated,

the basic principle is simple: the test looks for antibodies in the patient's

serum that react to the antigens present in Borrelia burgdorferi. If such

antibodies exist in the patient's blood, that is an indication that the patient

has been previously exposed to B. burgdorferi.

However, many different species of bacteria can share common proteins. Most

Lyme disease ELISA's use sonicated whole Borrelia burgdorferi -- that is,

they take a bunch of B. burgdorferi cells and break them down with high

frequency sound waves, then use the resulting smear as the antigen in the test.

It is

possible that a given patient's serum can react with the B. burgdorferi

preparation even if the patient hasn't been exposed to Bb, perhaps because Bb

shares proteins with another infectious agent that the patient's immune system

*has* encountered. For example, some patients with periodontal disease, which

is sometimes associated with an oral spirochete, might test positive on a

Lyme ELISA, because their sera will react to components of Bb (like the

flagellar protein, which is shared by many spirochetes) even though they

themselves

have never been infected with Bb. Therefore, some positive Lyme disease ELISA

results can be " false " positives.

To distinguish the false positives from the true positives, a more specific

laboratory technique, known as immunoblotting, is used.

The Western blot, which identifies specific antibody proteins, is but one

kind of immunoblot;

there is also a Northern blot, which separates and identifies RNA fragments,

and a Southern blot, which does the same for DNA sequences. In a Western

blot, the testing laboratory looks for antibodies directed against a wide range

of Bb proteins.

This is done by first disrupting Bb cells with an electrical current and

then " blotting " the separated proteins onto a paper or nylon sheet. The current

causes the proteins to separate according to their particle weights, measured

in kilodaltons (kDa).

From here on, the procedure is similar to the ELISA -- the various Bb

antigens are exposed to the patient's serum, and reactivity is measured the

same

way (by linking an enzyme to a second antibody that reacts to the human

antibodies). If the patient has antibody to a specific Bb protein, a " band "

will

form at a specific place on the immunoblot. For example, if a patient has

antibody directed against outer surface protein A (OspA) of Bb, there will be a

WB

band at 31 kDa. By looking at the band pattern of patient's WB results, the

lab can determine if the patient's immune response is specific for Bb.

Here's where all the problems come in. Until recently, there has never been

an agreed-upon standard for what constitutes a positive WB. Different

laboratories have used different antigen preparations (say, different strains

of Bb)

to run the test and have also interpreted results differently.

Some required a certain number of bands to constitute a positive result,

others might require more or fewer.

Some felt that certain bands should be given more priority than others.

In late 1994, the Centers for Disease Control and Prevention (CDC) convened

a meeting in Dearborn, Michigan [1] in an attempt to get everybody on the

same page, so that there would be some consistency from lab to lab in the

methodology and reporting of Western blot results.

Before we get to the recommendations that resulted from this meeting, we

need to understand one more facet of the human immune response. Many patients

have noticed that their Western blot report usually contains two parts: IgM and

IgG. These are immunoglobulins (antibody proteins) produced by the immune

system to fight infection.

IgM is produced fairly early in the course of an infection, while

IgG response comes later. Some patients might already have an IgM response

at the time of the EM rash; IgG response, according to the traditional model,

tends to start several weeks after infection and peak months or even years

later. In some patients, the IgM response can remain elevated; in others it

might decline, regardless of whether or not treatment is successful.

Similarly, IgG response can remain strong or decline with time, again

regardless of treatment. Most WB results report separate IgM and IgG band

patterns

and the criteria for a positive result are different for the two

immunoglobulins.

Finally, in setting up a nationwide standard for a positive WB, one makes

several assumptions --

that all strains of Bb will provoke similar immune responses in all

patients,

that all patients will mount a measurable immune response when exposed to

Bb, and

that the IgG immune response will persist in an infected patient.

Unfortunately, none of these is always true. Therefore, a judicious

interpretation of

Western blot results in a clinical setting should take into account both

the vagaries of the human immune response and

the possibility that strain variations in Bb might produce unusual banding

patterns.

The CDC criteria for a positive WB are as follows:

For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.

For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45,

58, 66 and 93.

How were these recommendations arrived at? The IgG criteria were taken

pretty much unchanged from a 1993 paper by Dressler, Whalen, Reinhardt and

Steere

[2]. In this study, the authors performed immunoblots on several dozen

patients with well characterized Lyme disease and a strong antibody response

and

looked at the resulting blot patterns. By doing some fairly involved

statistical analysis, they could determine which bands showed up most often and

which

best distinguished LD patients from control subjects who did not have LD. They

found that by requiring 5 of the 10 bands listed, they could make the

results the most specific, in their view, without sacrificing too much

sensitivity.

( " Sensitivity " means the ability of the test to detect patients who have the

disease, " specificity " means the ability of the test to exclude those who

don't. Usually, an increase in one of these measures means a decrease in the

other.) The IgM criteria were determined in much the same fashion (by different

authors in different papers). Fewer bands are required here because the

immune response is less mature at this point. Several studies have shown that

the first band to show up on a Lyme disease patient's IgM blot is usually

the one at 41 kDa,

followed by the OspC band and/or the one at 39. The OspC and 39 kDa band are

highly specific for Bb, while the 41 kDa band isn't. That's why the 41 by

itself isn't considered adequate. Here's the rub, though: the CDC doesn't want

the IgM criteria being used for any patient that has been sick for more than

about six weeks. The thinking here is that by this time an IgG response

should have kicked in and the IgM criteria, because they require fewer bands,

are

not appropriate for patients with later disease.

A number of criticisms have been offered of the CDC criteria since their

adoption in 1994.

The first is centered on the CDC's failure to make any qualitative

distinction among the various bands that can show up on a patient's Western

blot.

A number of Lyme disease researchers feel that different bands on a WB have

different relative importance -- that " all bands are not created equal. "

For example,

many patients with Lyme disease will show reactive bands at, say, 60 and/or

66 kDa. However, these correspond to common proteins in many bacteria, not

just Borrelia burgdorferi, and so are of limited diagnostic usefulness,

especially in the absence of other, more species-specific bands. The band at 41

kDa

corresponds to Bb's flagella (the whip like organelles used for locomotion --

Bb has several) is one of the earliest to show up on the Western blots of

Lyme disease patients. But for some reason it is also the most commonly

appearing band in control subjects. This may be due to the fact that many

people are

exposed to spirochetes at some time in their lives and so their sera might

cross react with this protein.

On the other hand, certain other bands are considered highly specific for Bb

-- the aforementioned

31 kDa band, for example, or

34 (OspB) or

39 or OspC (anywhere between 22 and 25). Also thought to be species-specific

are

The 83 and

94 kDa bands. Many Lyme disease scientists believe that any patient whose

IgG Western blot exhibits bands at, say, any three (or even two) of these

locations almost certainly has Lyme disease, regardless of whether or not any

other bands are present. They feel that these bands on a Lyme Western blot are

simply more meaningful than other, less specific ones and that a rational

interpretation of a WB result should take this into account. Unfortunately,

this

does not often happen, and will happen even less with the new CDC criteria.

A second criticism of the CDC Western blot criteria is that they fail to

include the 31 and 34 kDa bands.

This does indeed seem like an odd decision, since antibodies with these

molecular weights correspond to the OspA and OspB proteins of B. burgdorferi,

which are considered to be among the most species-specific proteins of the

organism.

So why didn't Dressler et al. include them?

Answer: These bands tend to appear late if at all in Lyme disease patients,

and did not show up with great frequency in the patients that the Dressler et

al. group studied (though they did show up sometimes). As a result, they

weren't deemed to have much diagnostic value and didn't find their way onto the

CDC hot list.

However,

while the absence of either of these bands from a patient's immunoblot

result does not rule out Lyme disease,

their presence is hardly meaningless. Thus, many Lyme disease experts

believe it is a serious mistake to exclude these two antibody proteins from the

list of significant bands. The CDC's decision to do so seems particularly

strange in light of the fact that it is the OspA component of Bb that is being

used

as the stimulating antigen in the ongoing experimental Lyme disease vaccine

trials. As one immunologist remarked shortly after the 1994 CDC conference,

" If OspA is so unimportant, then why the heck are we vaccinating people with

it? "

Finally, it is important to keep in mind that no matter how carefully the

Western blot test is carried out and interpreted, its usefulness, like that of

all tests that measure B. burgdorferi antibodies, is ultimately contingent on

the reliability of the human immune response as an indicator of exposure to

B. burgdorferi. There are several scenarios in which the lack of a detectable

antibody response may falsely suggest a lack of B. burgdorferi infection.

First, it is well established that early subcurative treatment of Lyme

disease can abrogate the human immune response to B. burgdorferi [3]. Although

this is not thought to be a common phenomenon, a recent comparative trial for

the treatment of erythema migrans found that a majority of patients who failed

early treatment and suffered clinical relapse were seronegative at the time

of relapse [4]. Even treatment for disseminated Lyme disease, in which the

patient's IgG immune response was previously well-established, can render a

patient seronegative after treatment despite post-treatment culture-positivity

for B. burgdorferi [5, 6].

In addition, patients with Lyme disease may not test positive for exposure

to B. burgdorferi because their antibodies to the organism are bound up in

immune complexes [7]. Once steps are taken to dissociate these immune

complexes,

free antibody can be detected; however, this is not routinely done when

performing serologic tests for Lyme disease.

Finally, an indeterminate number of patients with late Lyme disease are

simply seronegative for unknown reasons [8]. The actual percentage of such

cases

as a proportion of all Lyme disease cases is impossible to estimate, since

most studies of late Lyme disease enroll only seropositive patients, which

tends to reinforce the circular and erroneous notion that virtually all

patients

with late Lyme disease are seropositive.

It should also be noted that a positive Western blot is not necessarily an

indication of active Lyme disease. A patient's immune response to B.

burgdorferi can remain intact long after curative treatment for a Lyme

infection;

therefore, the results of a Western blot assay should always be interpreted in

the context of the total clinical picture. Addendum by Joachim Gruber: Carl

Brenner is one of 2 patients who sit on the National Institute of Allergy and

Infectious Diseases (NIAID) Advisory Committee for Clinical Studies on Chronic

Lyme (information from Ramp S, The dirty truth behind Lyme disease research,

Lyme Times 26,7, 1999).

REFERENCES

[1] Proceedings of the Second National Conference on Serologic Diagnosis of

Lyme Disease, October 27-29, 1994.

[2] Dressler F, Whalen JA, Reinhardt BN, Steere AC. Western blotting in the

serodiagnosis of Lyme disease. J Infect Dis 1993;167:392-400.

[3] Dattwyler RJ, Volkman DJ, Luft BJ et al. Seronegative Lyme disease:

dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi

..

N Engl J Med 1988;319:1441-6.

[4] Luft BJ, Dattwyler RJ, RC et al. Azithromycin compared with

amoxicillin in the treatment of erythema migrans. Ann Intern Med

1996;124:785-91.

[5] Häupl T, Hahn G, Rittig M, et al. Persistence of Borrelia burgdorferi in

ligamentous tissue from a patient with chronic Lyme borreliosis. Arth Rheum

1993;36:1621-6.

[6] Preac-Mursic V, Marget W, Busch U, Pleterski Rigler D, Hagl S. Kill

kinetics of Borrelia burgdorferi and bacterial findings in relation to the

treatment of Lyme borreliosis. Infection 1996;24:9-18.

[7] Schutzer SE, Coyle PK, Belman AL, et al. Sequestration of antibody to

Borrelia burgdorferi in immune complexes in seronegative Lyme disease. Lancet

1990;335:312-5.

[8] Liegner KB. Lyme disease and the clinical spectrum of antibiotic

responsive chronic meningoencephalomyelitides. (Abstract, 1996 LDF Conference,

Boston. MA)

Location of this page.Home Version: February 6, 2000.

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

find allmd immediately.!!!!! I have to get a

more accurate post once I have that test in my hand.

Thanks

--- Tiff <bestel63@...> wrote:

> Hi ,

>

> I want to jump in here on my own behalf because I

> also had a positive on band 41, I think it was ++ if

> I remember correctly. Anyway, I asked my Lyme

> friendly doctor about it and he said, that's normal,

> everyone has that one. But I've heard more than one

> person here say basically what you are saying and I

> definitely believe you guys have more knowledge

> about this than he does. He's a great doctor but

> still learning about Lyme and is no expert at this

> point. Do you know if this is in writing anywhere so

> I could show him this info about band 41? I am still

> on a waiting list to see an LLMD and this other

> doctor will not give me a dx or treat me for some

> reason. I even tested positive for Babesia Duncani

> and he still has yet to treat me or even comment on

> the test results. I'm very frustrated with him and I

> think I may done with him.

>

> Anyway, if you know of anything in writing maybe I

> will go back to see him and see what happens.

>

> Thank you!!

>

>

>

> ---------------------------------

> Never miss a thing. Make your homepage.

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Mobile. Try it now.

http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Band 41 is the most common band to be positive if you do, indeed, have Lyme. So

if that's what he meant then he's right. According to insurance guidelines you

must have 5 out of 10 bands positive to be diagnosed as having Lyme disease if

you are going to a regular Dr. who doesn't know any better. Of course, we all

know that's a bunch of nonsence. If band 41 was positive then you have Lyme.

Get yourself to a good LLMD and get the respect and proper care you deserve.

Penni

[ ] Re: Confused

Hi ,

I want to jump in here on my own behalf because I also had a positive on band

41, I think it was ++ if I remember correctly. Anyway, I asked my Lyme friendly

doctor about it and he said, that's normal, everyone has that one. But I've

heard more than one person here say basically what you are saying and I

definitely believe you guys have more knowledge about this than he does. He's a

great doctor but still learning about Lyme and is no expert at this point. Do

you know if this is in writing anywhere so I could show him this info about band

41? I am still on a waiting list to see an LLMD and this other doctor will not

give me a dx or treat me for some reason. I even tested positive for Babesia

Duncani and he still has yet to treat me or even comment on the test results.

I'm very frustrated with him and I think I may done with him.

Anyway, if you know of anything in writing maybe I will go back to see him and

see what happens.

Thank you!!

---------------------------------

Never miss a thing. Make your homepage.

[Guest guest]

Hi,

Penni,

quick question. I was triple banded +++ on 41 so that is an

indicator of a long standing infection right? I have a LLMD and he

states that he is certain that I have lyme. I am dealing with

nothing less than wicked reaction to minocin. I feel like I might

die actually.... anyway I feel pretty confident that it is Lyme. I

had 7 positive bands on the IGG and 41 +++ on the IGM as well as 31++

This will get easier right. The detox from antibiotics is

terrifying... any reassurance from anyone who has survived would be

apreciated. I must admit after this weekend I am quite scared!!!! I

have never felt sooo bad in my entire lyme life!!!!

Thanks

Shannan

In , " penni " <penni49@...> wrote:

>

> Band 41 is the most common band to be positive if you do, indeed,

have Lyme. So if that's what he meant then he's right. According

to insurance guidelines you must have 5 out of 10 bands positive to

be diagnosed as having Lyme disease if you are going to a regular

Dr. who doesn't know any better. Of course, we all know that's a

bunch of nonsence. If band 41 was positive then you have Lyme. Get

yourself to a good LLMD and get the respect and proper care you

deserve. Penni

[Guest guest]

Shannan, I know the detox is rough. You may want to ask your Dr. if you can

lower your dose of medication until your body adjusts to it. There is no need

to suffer and more than you already are. What you are experiencing is called a

Herxheimer reaction which will, hopefully, benefit you. You may have to try

several different med's/treatment's until you find the right combination that

works for you and it may take time. You can't give up. Make sure you have a

good support system and don't overdue it. Get plenty of rest. You will survive

and hopefully the road ahead will not be to hard. You have to stay strong, even

if your body is weak. Don't give in to this nasty disease. You can beat this.

My prayers are with you. Penni

[ ] Re: Confused

Hi,

Penni,

quick question. I was triple banded +++ on 41 so that is an

indicator of a long standing infection right? I have a LLMD and he

states that he is certain that I have lyme. I am dealing with

nothing less than wicked reaction to minocin. I feel like I might

die actually.... anyway I feel pretty confident that it is Lyme. I

had 7 positive bands on the IGG and 41 +++ on the IGM as well as 31++

This will get easier right. The detox from antibiotics is

terrifying... any reassurance from anyone who has survived would be

apreciated. I must admit after this weekend I am quite scared!!!! I

have never felt sooo bad in my entire lyme life!!!!

Thanks

Shannan

In , " penni " <penni49@...> wrote:

>

> Band 41 is the most common band to be positive if you do, indeed,

have Lyme. So if that's what he meant then he's right. According

to insurance guidelines you must have 5 out of 10 bands positive to

be diagnosed as having Lyme disease if you are going to a regular

Dr. who doesn't know any better. Of course, we all know that's a

bunch of nonsence. If band 41 was positive then you have Lyme. Get

yourself to a good LLMD and get the respect and proper care you

deserve. Penni

[Guest guest]

yes.. all good info... so true...

LLRN

Re: [ ] Re: Confused

I had saved this info in my files because it explains things the best. It is

long but very informative. I highlighted the part about specific bands for

lyme if you just want to skip down. ~Janet

Explanation of the Lyme Disease Western Blot

by

Carl Brenner

Inquiries about various issues relating to Western blot (WB) testing are

frequently posted to the Lyme disease discussion groups on the Internet. Among

the most commonly asked questions are:

What laboratory techniques are used to carry out the assay?

What exactly is being measured?

What is a " band " ?

How are the results interpreted?

What are the CDC criteria for a " positive " test? Although some of the

medical jargon associated with immunology can be a little overwhelming, the

scientific principles behind these tests are not difficult to grasp. The

following

article is offered as a primer in the techniques and interpretation of Western

blotting, and should help most patients navigate their way through some of

the medical and scientific terminology associated with the assay.

First of all, it should be noted that the Western blot is usually performed

as a follow-up to an ELISA test, which is the most commonly employed initial

test for Lyme disease. " ELISA " is an acronym for " enzyme-linked immunosorbent

assay. " There are ELISA tests and Western blots for many infectious agents;

for example, the usual testing regime for HIV is also an initial ELISA

followed by a confirmatory Western blot.

Both the ELISA and the Western blot are " indirect " tests -- that is, they

measure the immune system's response to an infectious agent rather than

looking

for components of the agent itself.

In a Lyme disease ELISA,

antigens (proteins that evoke an immune response in humans) from Borrelia

burgdorferi (Bb) are fixed to a solid-phase medium and

incubated with diluted preparations of the patient's serum. If antibodies to

the organism are present in the patient's blood, they will bind to the

antigen.

These bound antibodies can then be detected when a second solution, which

contains antibodies to human antibodies, is added to the preparation. Linked

to

these second antibodies is an enzyme which changes color when a certain

chemical is added to the mix. Although the methodology is somewhat

complicated,

the basic principle is simple: the test looks for antibodies in the patient's

serum that react to the antigens present in Borrelia burgdorferi. If such

antibodies exist in the patient's blood, that is an indication that the

patient

has been previously exposed to B. burgdorferi.

However, many different species of bacteria can share common proteins. Most

Lyme disease ELISA's use sonicated whole Borrelia burgdorferi -- that is,

they take a bunch of B. burgdorferi cells and break them down with high

frequency sound waves, then use the resulting smear as the antigen in the

test. It is

possible that a given patient's serum can react with the B. burgdorferi

preparation even if the patient hasn't been exposed to Bb, perhaps because Bb

shares proteins with another infectious agent that the patient's immune system

*has* encountered. For example, some patients with periodontal disease, which

is sometimes associated with an oral spirochete, might test positive on a

Lyme ELISA, because their sera will react to components of Bb (like the

flagellar protein, which is shared by many spirochetes) even though they

themselves

have never been infected with Bb. Therefore, some positive Lyme disease ELISA

results can be " false " positives.

To distinguish the false positives from the true positives, a more specific

laboratory technique, known as immunoblotting, is used.

The Western blot, which identifies specific antibody proteins, is but one

kind of immunoblot;

there is also a Northern blot, which separates and identifies RNA fragments,

and a Southern blot, which does the same for DNA sequences. In a Western

blot, the testing laboratory looks for antibodies directed against a wide

range

of Bb proteins.

This is done by first disrupting Bb cells with an electrical current and

then " blotting " the separated proteins onto a paper or nylon sheet. The

current

causes the proteins to separate according to their particle weights, measured

in kilodaltons (kDa).

From here on, the procedure is similar to the ELISA -- the various Bb

antigens are exposed to the patient's serum, and reactivity is measured the

same

way (by linking an enzyme to a second antibody that reacts to the human

antibodies). If the patient has antibody to a specific Bb protein, a " band "

will

form at a specific place on the immunoblot. For example, if a patient has

antibody directed against outer surface protein A (OspA) of Bb, there will be

a WB

band at 31 kDa. By looking at the band pattern of patient's WB results, the

lab can determine if the patient's immune response is specific for Bb.

Here's where all the problems come in. Until recently, there has never been

an agreed-upon standard for what constitutes a positive WB. Different

laboratories have used different antigen preparations (say, different strains

of Bb)

to run the test and have also interpreted results differently.

Some required a certain number of bands to constitute a positive result,

others might require more or fewer.

Some felt that certain bands should be given more priority than others.

In late 1994, the Centers for Disease Control and Prevention (CDC) convened

a meeting in Dearborn, Michigan [1] in an attempt to get everybody on the

same page, so that there would be some consistency from lab to lab in the

methodology and reporting of Western blot results.

Before we get to the recommendations that resulted from this meeting, we

need to understand one more facet of the human immune response. Many patients

have noticed that their Western blot report usually contains two parts: IgM

and

IgG. These are immunoglobulins (antibody proteins) produced by the immune

system to fight infection.

IgM is produced fairly early in the course of an infection, while

IgG response comes later. Some patients might already have an IgM response

at the time of the EM rash; IgG response, according to the traditional model,

tends to start several weeks after infection and peak months or even years

later. In some patients, the IgM response can remain elevated; in others it

might decline, regardless of whether or not treatment is successful.

Similarly, IgG response can remain strong or decline with time, again

regardless of treatment. Most WB results report separate IgM and IgG band

patterns

and the criteria for a positive result are different for the two

immunoglobulins.

Finally, in setting up a nationwide standard for a positive WB, one makes

several assumptions --

that all strains of Bb will provoke similar immune responses in all

patients,

that all patients will mount a measurable immune response when exposed to

Bb, and

that the IgG immune response will persist in an infected patient.

Unfortunately, none of these is always true. Therefore, a judicious

interpretation of

Western blot results in a clinical setting should take into account both

the vagaries of the human immune response and

the possibility that strain variations in Bb might produce unusual banding

patterns.

The CDC criteria for a positive WB are as follows:

For IgM, 2 of the following three bands: OspC (22-25), 39 and 41.

For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45,

58, 66 and 93.

How were these recommendations arrived at? The IgG criteria were taken

pretty much unchanged from a 1993 paper by Dressler, Whalen, Reinhardt and

Steere

[2]. In this study, the authors performed immunoblots on several dozen

patients with well characterized Lyme disease and a strong antibody response

and

looked at the resulting blot patterns. By doing some fairly involved

statistical analysis, they could determine which bands showed up most often

and which

best distinguished LD patients from control subjects who did not have LD. They

found that by requiring 5 of the 10 bands listed, they could make the

results the most specific, in their view, without sacrificing too much

sensitivity.

( " Sensitivity " means the ability of the test to detect patients who have the

disease, " specificity " means the ability of the test to exclude those who

don't. Usually, an increase in one of these measures means a decrease in the

other.) The IgM criteria were determined in much the same fashion (by

different

authors in different papers). Fewer bands are required here because the

immune response is less mature at this point. Several studies have shown that

the first band to show up on a Lyme disease patient's IgM blot is usually

the one at 41 kDa,

followed by the OspC band and/or the one at 39. The OspC and 39 kDa band are

highly specific for Bb, while the 41 kDa band isn't. That's why the 41 by

itself isn't considered adequate. Here's the rub, though: the CDC doesn't want

the IgM criteria being used for any patient that has been sick for more than

about six weeks. The thinking here is that by this time an IgG response

should have kicked in and the IgM criteria, because they require fewer bands,

are

not appropriate for patients with later disease.

A number of criticisms have been offered of the CDC criteria since their

adoption in 1994.

The first is centered on the CDC's failure to make any qualitative

distinction among the various bands that can show up on a patient's Western

blot.

A number of Lyme disease researchers feel that different bands on a WB have

different relative importance -- that " all bands are not created equal. "

For example,

many patients with Lyme disease will show reactive bands at, say, 60 and/or

66 kDa. However, these correspond to common proteins in many bacteria, not

just Borrelia burgdorferi, and so are of limited diagnostic usefulness,

especially in the absence of other, more species-specific bands. The band at

41 kDa

corresponds to Bb's flagella (the whip like organelles used for locomotion --

Bb has several) is one of the earliest to show up on the Western blots of

Lyme disease patients. But for some reason it is also the most commonly

appearing band in control subjects. This may be due to the fact that many

people are

exposed to spirochetes at some time in their lives and so their sera might

cross react with this protein.

On the other hand, certain other bands are considered highly specific for Bb

-- the aforementioned

31 kDa band, for example, or

34 (OspB) or

39 or OspC (anywhere between 22 and 25). Also thought to be species-specific

are

The 83 and

94 kDa bands. Many Lyme disease scientists believe that any patient whose

IgG Western blot exhibits bands at, say, any three (or even two) of these

locations almost certainly has Lyme disease, regardless of whether or not any

other bands are present. They feel that these bands on a Lyme Western blot are

simply more meaningful than other, less specific ones and that a rational

interpretation of a WB result should take this into account. Unfortunately,

this

does not often happen, and will happen even less with the new CDC criteria.

A second criticism of the CDC Western blot criteria is that they fail to

include the 31 and 34 kDa bands.

This does indeed seem like an odd decision, since antibodies with these

molecular weights correspond to the OspA and OspB proteins of B. burgdorferi,

which are considered to be among the most species-specific proteins of the

organism.

So why didn't Dressler et al. include them?

Answer: These bands tend to appear late if at all in Lyme disease patients,

and did not show up with great frequency in the patients that the Dressler et

al. group studied (though they did show up sometimes). As a result, they

weren't deemed to have much diagnostic value and didn't find their way onto

the

CDC hot list.

However,

while the absence of either of these bands from a patient's immunoblot

result does not rule out Lyme disease,

their presence is hardly meaningless. Thus, many Lyme disease experts

believe it is a serious mistake to exclude these two antibody proteins from

the

list of significant bands. The CDC's decision to do so seems particularly

strange in light of the fact that it is the OspA component of Bb that is being

used

as the stimulating antigen in the ongoing experimental Lyme disease vaccine

trials. As one immunologist remarked shortly after the 1994 CDC conference,

" If OspA is so unimportant, then why the heck are we vaccinating people with

it? "

Finally, it is important to keep in mind that no matter how carefully the

Western blot test is carried out and interpreted, its usefulness, like that of

all tests that measure B. burgdorferi antibodies, is ultimately contingent on

the reliability of the human immune response as an indicator of exposure to

B. burgdorferi. There are several scenarios in which the lack of a detectable

antibody response may falsely suggest a lack of B. burgdorferi infection.

First, it is well established that early subcurative treatment of Lyme

disease can abrogate the human immune response to B. burgdorferi [3]. Although

this is not thought to be a common phenomenon, a recent comparative trial for

the treatment of erythema migrans found that a majority of patients who failed

early treatment and suffered clinical relapse were seronegative at the time

of relapse [4]. Even treatment for disseminated Lyme disease, in which the

patient's IgG immune response was previously well-established, can render a

patient seronegative after treatment despite post-treatment culture-positivity

for B. burgdorferi [5, 6].

In addition, patients with Lyme disease may not test positive for exposure

to B. burgdorferi because their antibodies to the organism are bound up in

immune complexes [7]. Once steps are taken to dissociate these immune

complexes,

free antibody can be detected; however, this is not routinely done when

performing serologic tests for Lyme disease.

Finally, an indeterminate number of patients with late Lyme disease are

simply seronegative for unknown reasons [8]. The actual percentage of such

cases

as a proportion of all Lyme disease cases is impossible to estimate, since

most studies of late Lyme disease enroll only seropositive patients, which

tends to reinforce the circular and erroneous notion that virtually all

patients

with late Lyme disease are seropositive.

It should also be noted that a positive Western blot is not necessarily an

indication of active Lyme disease. A patient's immune response to B.

burgdorferi can remain intact long after curative treatment for a Lyme

infection;

therefore, the results of a Western blot assay should always be interpreted in

the context of the total clinical picture. Addendum by Joachim Gruber: Carl

Brenner is one of 2 patients who sit on the National Institute of Allergy and

Infectious Diseases (NIAID) Advisory Committee for Clinical Studies on Chronic

Lyme (information from Ramp S, The dirty truth behind Lyme disease research,

Lyme Times 26,7, 1999).

REFERENCES

[1] Proceedings of the Second National Conference on Serologic Diagnosis of

Lyme Disease, October 27-29, 1994.

[2] Dressler F, Whalen JA, Reinhardt BN, Steere AC. Western blotting in the

serodiagnosis of Lyme disease. J Infect Dis 1993;167:392-400.

[3] Dattwyler RJ, Volkman DJ, Luft BJ et al. Seronegative Lyme disease:

dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi

..

N Engl J Med 1988;319:1441-6.

[4] Luft BJ, Dattwyler RJ, RC et al. Azithromycin compared with

amoxicillin in the treatment of erythema migrans. Ann Intern Med

1996;124:785-91.

[5] Häupl T, Hahn G, Rittig M, et al. Persistence of Borrelia burgdorferi in

ligamentous tissue from a patient with chronic Lyme borreliosis. Arth Rheum

1993;36:1621-6.

[6] Preac-Mursic V, Marget W, Busch U, Pleterski Rigler D, Hagl S. Kill

kinetics of Borrelia burgdorferi and bacterial findings in relation to the

treatment of Lyme borreliosis. Infection 1996;24:9-18.

[7] Schutzer SE, Coyle PK, Belman AL, et al. Sequestration of antibody to

Borrelia burgdorferi in immune complexes in seronegative Lyme disease. Lancet

1990;335:312-5.

[8] Liegner KB. Lyme disease and the clinical spectrum of antibiotic

responsive chronic meningoencephalomyelitides. (Abstract, 1996 LDF Conference,

Boston. MA)

Location of this page.Home Version: February 6, 2000.

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Hi Joy!

I'm sorry to hear all of this... :-(

Apparently the antibodies are 1 of the 2 Hashis since your endo says you are

going to go full-blown hypo eventually. Do you already know what each of the

antibodies do? If not, let us know and one of us can explain.

Also, it sounds like you could really use some of what you could learn from Dr.

Mark Starr's book, 'Hypothyroidism Type 2' right now. This book went a long way

for me in understanding more of what is happening and convincing my doctor to

try some different alternatives.

Dr. Starr also has Hashis, so he's 'been there' if you will...

>

> Hi,

>

> I went to the Endo today and she said the biopsy came back undiagnostic. So

now she wants to wait six months to see if it grows so she can get a good sample

then.  Is this normal? 

>

> She wanted to redo my thryoid blood test but can't because insurance won't pay

for it again.  Last one is in Feb.  My styptoms are getting worse but she won't

put me on anything until the blood work shows more.  Is this normal?

>

> Vitamin D is los so she is putting me on 1000 units of it.  One test, I think

it was tyroid antibioties if that sounds right was 394 and the normal range she

said was to 30.  She said this is the reason for my fatigue and hair loss etc. I

guess I get to go bald. She did order some other blood test that wasn't ran

before and of course another 24 hour urine test for something else.  I feel so

confused right now. She told me I am at the begining of hypo and it will get

full blown at some point.  So I am going to feel worse?

>

> I mentioned the swelling and she said thyroid won't cause it but maybe

arthritis or congestive heart failure but she doubts it is with my heart because

last June I had a stress test and it was normal.  So she can't figure out why

the edema is so bad. I will see her again on April 30th and then she will

discuss the plan for six months from now. August these nodules will have been

there a year and so I just wait.....UGH! I just want to feel normal again.

>

> Joy

>

>

>

>

>

[Guest guest]

Joy-

i don't why the insurance won't cover an another lab test, that sound crazy

to me. I don't think that is correct. Most insurances will cover repeated

lab tests along as we write a diagnosis on the chart. Since she already

suspected you of having thyroid related issues, there shouldn't be any issue

with the insurance company. I would call you insurance company yourself and

ask them.

As far as waiting 6 months, well that is controversial. Some believe in

waiting 6 months and some re check in 3 months. I think if she is not going

to biopsy for another 6 months, she should at least see you every 3 to

physically palpate the thyroid and if you are having symptoms of hypo T you

should at least try you on some hormones to see if they help.

Maybe it is time to find a natural medicine provider.

Nancie

-- Confused

Hi,

I went to the Endo today and she said the biopsy came back undiagnostic. So

now she wants to wait six months to see if it grows so she can get a good

sample then. Is this normal?

She wanted to redo my thryoid blood test but can't because insurance won't

pay for it again. Last one is in Feb. My styptoms are getting worse but

she won't put me on anything until the blood work shows more. Is this

normal?

Vitamin D is los so she is putting me on 1000 units of it. One test, I

think it was tyroid antibioties if that sounds right was 394 and the normal

range she said was to 30. She said this is the reason for my fatigue and

hair loss etc. I guess I get to go bald. She did order some other blood test

that wasn't ran before and of course another 24 hour urine test for

something else. I feel so confused right now. She told me I am at the

begining of hypo and it will get full blown at some point. So I am going to

feel worse?

I mentioned the swelling and she said thyroid won't cause it but maybe

arthritis or congestive heart failure but she doubts it is with my heart

because last June I had a stress test and it was normal. So she can't

figure out why the edema is so bad. I will see her again on April 30th and

then she will discuss the plan for six months from now. August these nodules

will have been there a year and so I just wait.....UGH! I just want to feel

normal again.

Joy

[Guest guest]

Hi ,

No I have no idea what the antibodies mean?  Thanks for the book information I

will definitely order it?  So why can't they stop this from getting worse?

________________________________

From: cindy.seeley <cindy.seeley@...>

hypothyroidism

Sent: Friday, April 10, 2009 7:09:15 PM

Subject: Re: Confused

Hi Joy!

I'm sorry to hear all of this... :-(

Apparently the antibodies are 1 of the 2 Hashis since your endo says you are

going to go full-blown hypo eventually. Do you already know what each of the

antibodies do? If not, let us know and one of us can explain.

Also, it sounds like you could really use some of what you could learn from Dr.

Mark Starr's book, 'Hypothyroidism Type 2' right now. This book went a long way

for me in understanding more of what is happening and convincing my doctor to

try some different alternatives.

Dr. Starr also has Hashis, so he's 'been there' if you will...

>

> Hi,

>

> I went to the Endo today and she said the biopsy came back undiagnostic. So

now she wants to wait six months to see if it grows so she can get a good sample

then.  Is this normal? 

>

> She wanted to redo my thryoid blood test but can't because insurance won't pay

for it again.  Last one is in Feb.  My styptoms are getting worse but she won't

put me on anything until the blood work shows more.  Is this normal?

>

> Vitamin D is los so she is putting me on 1000 units of it.  One test, I think

it was tyroid antibioties if that sounds right was 394 and the normal range she

said was to 30.  She said this is the reason for my fatigue and hair loss etc. I

guess I get to go bald. She did order some other blood test that wasn't ran

before and of course another 24 hour urine test for something else.  I feel so

confused right now. She told me I am at the begining of hypo and it will get

full blown at some point.  So I am going to feel worse?

>

> I mentioned the swelling and she said thyroid won't cause it but maybe

arthritis or congestive heart failure but she doubts it is with my heart because

last June I had a stress test and it was normal.  So she can't figure out why

the edema is so bad. I will see her again on April 30th and then she will

discuss the plan for six months from now. August these nodules will have been

there a year and so I just wait.....UGH! I just want to feel normal again.

>

> Joy

>

>

>

>

>

[Guest guest]

I can only give my opinion on what you just posted according to what I would do

for myself. I would get another doctor in the first place. I would try to have

them do an MRI in the second place and I would be talking to someone who knows

what they're talking about instead of someone who is taking stabs in the dark.

Sorry.

Roni

<>Just because something

isn't seen doesn't mean it's

not there<>

From: Joy Ruoff <joyruoff@...>

Subject: Confused

hypothyroidism

Date: Friday, April 10, 2009, 3:59 PM

Hi,

I went to the Endo today and she said the biopsy came back undiagnostic. So now

she wants to wait six months to see if it grows so she can get a good sample

then.  Is this normal? 

She wanted to redo my thryoid blood test but can't because insurance won't pay

for it again.  Last one is in Feb.  My styptoms are getting worse but she won't

put me on anything until the blood work shows more.  Is this normal?

Vitamin D is los so she is putting me on 1000 units of it.  One test, I think it

was tyroid antibioties if that sounds right was 394 and the normal range she

said was to 30.  She said this is the reason for my fatigue and hair loss etc. I

guess I get to go bald. She did order some other blood test that wasn't ran

before and of course another 24 hour urine test for something else.  I feel so

confused right now. She told me I am at the begining of hypo and it will get

full blown at some point.  So I am going to feel worse?

I mentioned the swelling and she said thyroid won't cause it but maybe arthritis

or congestive heart failure but she doubts it is with my heart because last June

I had a stress test and it was normal.  So she can't figure out why the edema is

so bad. I will see her again on April 30th and then she will discuss the plan

for six months from now. August these nodules will have been there a year and so

I just wait.....UGH! I just want to feel normal again.

Joy