Re: Lyme Question

June 27, 2001

rheumatic Lyme Question

>

> Now, after all my research, I want to be tested for LD but my

understanding

> is that there are really good tests and really bad tests that exist. My

> question is, does anyone know the name of the good test and the name of a

> doctor in the Atlanta area that will listen???

>

> Thanks A Million, Roneice

Try -

B. Edelson, M.D.

Environmental and Preventive Health Center of Atlanta

404-841-0088

Atlanta has a new website to list doctors using alternative therapies. I

think it's www.cama.org.

Ethel

June 27, 2001

I am working on getting the latest information on testing. kathy

rheumatic Lyme Question

>Dear Group,

>

>I've been surfing the web a lot lately and I'm beginning to wonder if my

>Lupus could be Lyme Disease. I've heard that people in the South, who ask

>their doctor about LD, often get the response, " have you been to or ever

>lived in the NE? If not there's NO WAY you can have LD!!! " But then what

>more can I expect...I mean they have been to medical school and all, so,

I'm

>sure they know more than me, right!?!?!?! ; ))

>

>Several articles I've read talk about a less severe version of LD in

Georgia

>and I've spent a lot of time camping, hiking and hunting. About 24 years

>ago, my husband and I were in the woods when tiny bugs started to fall out

>of the trees. In fact, it was almost as if it started raining these little

>creatures. I told my husband they looked like tiny ticks. He agreed and

we

>went on about our business. A few years later I started having joint

>problems and decided I probably had inherited my father's RA on some level.

>When I went to the doctor I was diagnosed with Lupus.

>

>Now, after all my research, I want to be tested for LD but my understanding

>is that there are really good tests and really bad tests that exist. My

>question is, does anyone know the name of the good test and the name of a

>doctor in the Atlanta area that will listen???

>

>Thanks A Million, Roneice

>

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June 28, 2001

We had a lot of people from our church two years ago that had lyme disease and what they called in AR tick fever. I was tested for LD but it came back negative that was over a year ago I was treated for LD because of the way the bite was acting it was still there after a year. I have heard now that the treatment using antibiotics was not taken long enough or a high enough dose. The tick bite did finally go away though.

There wasn't any test that could tell positively that it was or was not Lyme so I think if you want to be tested that is fine it is just a simple blood test if it does come out positive you will be put on antibiotics and it can not harm you.

We assumed that I did have it since it was only people from our church and ones that lived close to us that had it and we lived next door to the church. That was in Arkansas so yes it is in the southern states.

Peace,

Sherry

>Dear Group,>>I've been surfing the web a lot lately and I'm beginning to wonder if my>Lupus could be Lyme Disease. I've heard that people in the South, who ask>their doctor about LD, often get the response, "have you been to or ever>lived in the NE? If not there's NO WAY you can have LD!!!" But then what>more can I expect...I mean they have been to medical school and all, so,I'm>sure they know more than me, right!?!?!?! ; ))>>Several articles I've read talk about a less severe version of LD inGeorgia>and I've spent a lot of time camping, hiking and hunting. About 24 years>ago, my husband and I were in the woods when tiny bugs started to fall out>of the trees. In fact, it was almost as if it started raining these little>creatures. I told my husband they looked like tiny ticks. He agreed andwe>went on about our business. A few years later I started having joint>problems and decided I probably had inherited my father's RA on some level.>When I went to the doctor I was diagnosed with Lupus.>>Now, after all my research, I want to be tested for LD but my understanding>is that there are really good tests and really bad tests that exist. My>question is, does anyone know the name of the good test and the name of a>doctor in the Atlanta area that will listen???>>Thanks A Million, Roneice>>>> Confidentiality Notice>This message is being sent by or on behalf of a lawyer. It is intendedexclusively for the individual or entity to which it is addressed. Thiscommunication may contain information that is proprietary, privileged orconfidential or otherwise legally exempt from disclosure. If you are notthe named addressee, you are not authorized to read, print, retain, copy ordisseminate this message or any part of it. If you have received thismessage in error, please notify the sender immediately by e-mail and deleteall copies of the message.>>>>To unsubscribe, email: rheumatic-unsubscribeegroups>>>

February 5, 2003

Dear Peggy,

You wrote, " Can someone tell me the best form of Lyme testing for someone

like me -- sick ten years, never a positive Lyme test? "

The best? Probably 5 or 10 days in a row of PCR tests. There are only a

few labs in the country that are certified to do PCRs for Lyme. MDL is one.

People might disagree as to the best form of Lyme testing, but everyone

agrees on the WORST: the ELISA. It is worse than useless. The Western Blot

is okay, but gets a lot of false negatives.

You also wrote that your partner, " only tested positive for Lyme with a

spinal tap. " Did she respond to treatment? (I worry about spinal taps.)

Sue B.

upstate New York

February 5, 2003

the ELISA. It is worse than useless. The Western Blot

> is okay, but gets a lot of false negatives.

>

> Sue B.

Can you get false positives on any Lyme test?

Bob

February 6, 2003

Dear Bob,

Beck wrote, " Dr. s, who runs Esoterix in San says that false

positive PCR's can be caused by Borellia organisms that live in the mouth

and a tech can cough into the gel. Also, by cross contamination of samples

in the lab. "

I think this is an important question, since you might end up with a tube up

your arm for a few months, based on the test results. If you can get two

positive PCRs, that's probably better than one.

On the other hand, I talked to a technician at MDL about this, and she said

that all of their work is done under hoods. This should cut down on

airborne contamination. Also, all of the work on a specimen is done with the

specimen remaining in its original (new) tube, which should cut down on

cross contamination..

She also said that for every batch of 19 samples they work on they include a

known positive and a known negative. If the known negative tests positive,

they throw out all the samples and do it again--with what they have set

aside. If the known positive tests negative, same thing.

So could a positive PCR be false? Sure, but it's very unlikely at a good

lab. In order to be certified by the state, the lab is sent blinded

specimens, and they have to identify all the positives and negatives

correctly, and they do.

I think the bigger worry is that the DNA of what they're looking for simply

won't be hanging out in the little sample of blood that they have. Or it

will be bound up in an immune complex. So you are much more likely to get a

false negative.

With the antibody tests, I think there are studies that show that there are

more false positives (cross reaction?) than with the PCRs.

Sue B.

upstate New York

February 6, 2003

Sue,

I think this is a very good mail re PCRs and false positives and false

negatives. It is really interesting for me to know that MDLs take such

stringent precautions as that's where we had our PCR tests done. I was

positive for Babesia and for Mycoplasma fermentans and my husband was

positive for Bartonella and Nanobacteria.

I had a PCR positive for Borrelia at a vet lab in Madrid, I don't think they

take such precautions with the samples but on the other hand they are not

doing much Bb testing either so cross-contamination might not be a problem,

there's always the sneezing in the sample problem, of course!

Nelly

Re: Lyme question

> Dear Bob,

>

> Beck wrote, " Dr. s, who runs Esoterix in San says that false

> positive PCR's can be caused by Borellia organisms that live in the mouth

> and a tech can cough into the gel. Also, by cross contamination of

samples

> in the lab. "

>

> I think this is an important question, since you might end up with a tube

up

> your arm for a few months, based on the test results. If you can get two

> positive PCRs, that's probably better than one.

>

> On the other hand, I talked to a technician at MDL about this, and she

said

> that all of their work is done under hoods. This should cut down on

> airborne contamination. Also, all of the work on a specimen is done with

the

> specimen remaining in its original (new) tube, which should cut down on

> cross contamination..

September 20, 2004

In a message dated 9/18/2004 7:42:55 PM Eastern Standard Time,

sscholz@... writes:

> Can you have lyme presenting just as sjogrens (dry mouth and eyes) ?

>

YES!!!!

This is what I emphasize with my clients....

it does not matter what 'label' one has.....

MS/ALS/fibromyaliga/lupus/Parkinsons.... etc. even Lyme.

What matters is when a person is suffering with a chronic, degenerative,

neurological disease..... GO TO THE ROOT CAUSE.

And what that means is the body is lacking (usually a multitude) of things so

that any pathogen will invade and take over. What I mean specifically in the

case of lyme or any of the above is it is usually a weakened immune system

(which consists of your thymus, spleen, liver, stomach, intestinal flora and

your

long bones.... these are your immune system). When your immune system is

challenged, usually due to toxicity of toxins, neurotoxins, mycotoxins, etc.,

you

are in trouble.

We know that the lyme spirochete, which is pleomorphic (it changes forms,

spirochetal to L-shape to cyst, etc), is impossible to rid itself from the body.

What we CAN do is change the internal environment so that it can be dormant.

Babesia affects the spleen... it is a protozoa, kills red blood cells. MANY

test negative and think they don't have it.... think again. Almost ALL my

clients do.

Build the immune system..... .with products i.e. Thymex (Standard Process),

RM10 (Garden of Life), Transfer Factor Plus (4-Life), Biomune (Matol) to name a

few.

There is a whole, natural protocol that I do for each individual. It is not

the same for all, just like there is not a common treatment for lyme with a

LLMD.

sue massie, CNHP

732 933-4011

September 22, 2004

I appreciate you're asking my opinion. i have only know i have Lyme disease for

less that 3 weeks. i am doing the Detoxx diet with supplements as well as the

Tetracyline and Samento (Cats claw) for now. there are so many supplements

which will help to rid my body of heavy metals as well as the bacteria. my

doctor does both the alternative as well as normal treatment. i had my meridans

checked today with a computer to ascertain which systems in my body are being

comprimsed and a lot of other things. do not know if that helps. i think a

blend might just be the way to go. the diet is high protein and organic with

lots of water too. sue osborn

Anne Todd <cat777spikenard@...> wrote:Hi Sue,

I was recently dx with lyme after 14+ yr illness-FMS.

I have used amoxicillin for a couple of months along

with a few doses of doxy and tetracycline. After

reading much about the ineffectiveness of abx in

chronic lyme including causing the spirochete to cyst,

I am taking some time to decide what to do next.

I do have a llmd in the Ft. Worth area. He does not

like to use iv for chronic lyme unless you are majorly

impaired. At first i was on a search for iv but after

communicating with those who have done iv over and

over again without significant lasting improvement, I

have given that up for the time being. What do you

think of this? Some might say that you should at least

reduce the load (I tested in moderate range) before

doing the natural stuff. Is this valid. Thank You for

your thoughts and consideration.--Anne

September 24, 2004

Hi Anne - I'm not Sue, but I want to get in on this. It seems we all

three are about in the same boat. Newly diagnosed, trying to sort out

the myriad of treatments and what to do for ourselves.

I am using samento as a first step. My doctor said he wanted to see

how far we could get with the natural treatment before resorting to

an antibiotic. (Attempting to " reduce the load " as I believe this is

what you are referring to in your message.) I have been attempting to

avoid antibiotics altogether, worrying about the effects on my

intestine and the flora that would be destroyed. However, during my

last visit, when he mentioned taking antibiotics, he said that the

antibiotics can get inside the cell - where the lyme borreliosis is

hiding.

If that's true, then there should be a lot more successful cases

since it seems that everybody takes antibiotics - of one sort or

another. There are an assortment of antibiotics mentioned here on

this list. I am totally bewildered by them. But I do think in the end

analysis - what works for one person may not work for another -

although I can't figure out why that would be. How does one evaluate

if an antibiotic is working? You can't feel it working or not

working. Does it make you feel better?

I was taking the samento and attempting to increase the dosage. I

went from 7 drops 3x/day to 10 drops 3x/day. For some reason - I had

a day where I couldn't get out of bed. Total exhaustion. I reduced

the dosage back down to 5 drops 3x/day and am feeling more " normal "

again. Could be just a coincidence. But I am really at a loss as to

how to evaluate treatments - be they natural or antibiotic.

Any comments at all would be greatly appreciated. Laureen

>Hi Sue,

>I was recently dx with lyme after 14+ yr illness-FMS.

>I have used amoxicillin for a couple of months along

>with a few doses of doxy and tetracycline. After

>reading much about the ineffectiveness of abx in

>chronic lyme including causing the spirochete to cyst,

>I am taking some time to decide what to do next.

>

>I do have a llmd in the Ft. Worth area. He does not

>like to use iv for chronic lyme unless you are majorly

>impaired. At first i was on a search for iv but after

>communicating with those who have done iv over and

>over again without significant lasting improvement, I

>have given that up for the time being. What do you

>think of this? Some might say that you should at least

>reduce the load (I tested in moderate range) before

>doing the natural stuff. Is this valid. Thank You for

>your thoughts and consideration.--Anne

September 24, 2004

Greetings...I'm also a new member - I just joined today. I've had 2 blood tests

(due to having several Lyme symptoms for over 1 year). Each blood test for

Western Blot only showed 3 bands as positive - '41', '58', and '66'. I'm

hearing some say this indicates I do NOT have Lyme, and I've heard the opposite

from other professionals. I'm seeing a specialist in October, and I'm trying to

gather as much information as I can. I live in the mountains of PA and (was)

very active with yard work. Lots of deer in this area. I'm always fatigued - I

have to lay down every few hours; My joints (especially knees) have been stiff

and painful; Lots of big headaches; Occasional mental confusion; and general

feelings of poor health. Anyone else have Lyme who only had 3 bands present for

this test? Thanks...Tom

Re: [ ] lyme question