Re: Lyme Diagnosis- Fact or fiction

January 2, 2007

Dear CC,

I'm glad you're thinking twice about a long course of antibiotics.

My thinking is that antibiotics are weapons of mass destruction.

People who take long courses of antibiotcs, then another stronger,

newer, less tested antibiotic, then intravenous antibiotic...well it's

no wonder that they feel bad, they have destroyed their body's own

defense system, which is the most important thing we have.

As far as not having an 'official' diagnosis, you will find that many

of us, with or without a diagnosis, treat the symptoms. For example,

myself, at the present time I am practically symptom free - if I had

health insurance or a lot of money, I could probably keep getting lab

tests to see if I 'still have' Lyme. [i had Babesia too]. Even then I

might never have a definitive answer; that is the nature of this illness.

I would suggest (1) do some research on antibiotics, among alternative

health sites, and think about if you want to go that route.

(2) read here and elsewhere among peoples' stories and search for

symptoms which are similar to yours, and try treating the symptom.

To be honest, there are people who will say any symptom at all is

Lyme. Nothing you say sounds like Lyme to me.

BTW, if I may offer another suggestion, altho you didn't ask - re

depression. I have found SAM-e very effective for depression. I used

to suffer from severe depression.

best of luck,

ellen

>

> Hello all....My LLMD has advised that he believes me to be infected

> with Babesia and Lyme disease based on a test whuich he admits may not

> be accurate. I have been struggling with depression for about 6 years..

> a year ago I began experiencing weakness in my arms and legs..that

> seems to be aggravated by B vitamins...the weakness came on after I

> took megadoses of B vitamins (for the depression) that my LLMD

> approved. Though I really have no other symptoms...other than muscle

> weakness and depression...he is now recommending a long course of

> antibiotics to treat lyme/babesia! I have had little exposure to ticks

> in the last 20 years ...though I was attacked by them during one

> military summer in Ft. Bragg NC in 1983...I understand that very small

> percentage of ticks are infected and that infection does not always

> result when bitten...anyone have any thoughts? It seems crazy to

> begin an antibiotic regimen with so little evidence of infection...i

> hope you all are finding your way to health.

>

January 2, 2007

Thanks Ellen....I don't beleive I have Lyme either...I have been

detoxing mercury from my body for nearly a year using a protocal

developed by Hall Cutler. Many Lyme symptoms are similar to

mercury toxicity symptoms and I'll bet many people who believe they

have lyme are actually mercury poisoned...lots of lyme docs have

noted heavy metal toxicities in their patients...coincidence? Maybe

not....God Bless you!

>

> Dear CC,

> I'm glad you're thinking twice about a long course of antibiotics.

>

> My thinking is that antibiotics are weapons of mass destruction.

> People who take long courses of antibiotcs, then another stronger,

> newer, less tested antibiotic, then intravenous antibiotic...well

it's

> no wonder that they feel bad, they have destroyed their body's own

> defense system, which is the most important thing we have.

>

> As far as not having an 'official' diagnosis, you will find that

many

> of us, with or without a diagnosis, treat the symptoms. For example,

> myself, at the present time I am practically symptom free - if I had

> health insurance or a lot of money, I could probably keep getting

lab

> tests to see if I 'still have' Lyme. [i had Babesia too]. Even then

I

> might never have a definitive answer; that is the nature of this

illness.

>

> I would suggest (1) do some research on antibiotics, among

alternative

> health sites, and think about if you want to go that route.

> (2) read here and elsewhere among peoples' stories and search for

> symptoms which are similar to yours, and try treating the symptom.

>

> To be honest, there are people who will say any symptom at all is

> Lyme. Nothing you say sounds like Lyme to me.

>

> BTW, if I may offer another suggestion, altho you didn't ask - re

> depression. I have found SAM-e very effective for depression. I used

> to suffer from severe depression.

>

> best of luck,

> ellen

>

January 2, 2007

CC,

You did not mention what type of test was given. Igenex, Bowen or what?

Also I must disagree with Ellen as muscle weakness and depression are classic

symptoms of lyme - however we are all different in the way we react to lyme.

There must be a reason your LLMD thinks you have lyme, after all that is what

they are supposedly literate in.

I have successfully treated/remission RA with very low dose/pulsed (50 mg

MWF)Minocin for 4 years now, without terrible consequences. Whenever I go off of

it the RA (actually another manifestation of lyme IMHO) comes back with a

vengence so I know that Minocin works (for me), and although I dont like to take

it, it is much better than the alternatives (enbrel, methotrexate etc). If you

have caught lyme very recently, then ABX is undoubtedly the way to go - the

sooner the better. Does your LLMD say when he thinks how long you've had it?

Minocin/doxycycline is not a true antibiotic but what's called an

anti-bacteriostatic which means it creates an environment that is not condusive

to the lyme spirochete or other bacteria (they simply cannot create super bugs).

Other antibiotics like penicillin are true antibiotics and yes, they can be very

harmful to your immune system, and create super-bugs like Ellen said. If you do

plan on going with doxy or minocin, be sure to take a good

probitic such as Primal Defense or similar. I also am one who cannot tolerate

vit B at all. I believe that (as Buhner does as well) lyme is not only spread by

ticks, but various vectors such as flies, etc. I have been bitten 100's times by

ticks, and may very well have contracted lyme through ticks but in my heart I

know exactly when and what gave lyme to me. It was appx 18 years ago and was

bitten twice on each thumb by a little green barn fly. My hands and fingers

swelled to where I had no function, and then achey and flulike for 2 weeks after

- wow it was horrible. Now whenever the RA flares up, that is exactly where it

starts is in those 2 places on my hands - coincidence? dont think so...

If you do plan on doxy/minocin and also Buhner protocol please ramp up very

slowly, pace not race, as the die-off is worse than the disease itself. Treat

yourself well, get plenty of rest, water and nutrition/supplementation.

Regards,

Sam

[ ] Re: Lyme Diagnosis- Fact or fiction

Dear CC,

I'm glad you're thinking twice about a long course of antibiotics.

My thinking is that antibiotics are weapons of mass destruction.

People who take long courses of antibiotcs, then another stronger,

newer, less tested antibiotic, then intravenous antibiotic.. .well it's

no wonder that they feel bad, they have destroyed their body's own

defense system, which is the most important thing we have.

As far as not having an 'official' diagnosis, you will find that many

of us, with or without a diagnosis, treat the symptoms. For example,

myself, at the present time I am practically symptom free - if I had

health insurance or a lot of money, I could probably keep getting lab

tests to see if I 'still have' Lyme. [i had Babesia too]. Even then I

might never have a definitive answer; that is the nature of this illness.

I would suggest (1) do some research on antibiotics, among alternative

health sites, and think about if you want to go that route.

(2) read here and elsewhere among peoples' stories and search for

symptoms which are similar to yours, and try treating the symptom.

To be honest, there are people who will say any symptom at all is

Lyme. Nothing you say sounds like Lyme to me.

BTW, if I may offer another suggestion, altho you didn't ask - re

depression. I have found SAM-e very effective for depression. I used

to suffer from severe depression.

best of luck,

ellen

>

> Hello all....My LLMD has advised that he believes me to be infected

> with Babesia and Lyme disease based on a test whuich he admits may not

> be accurate. I have been struggling with depression for about 6 years..

> a year ago I began experiencing weakness in my arms and legs..that

> seems to be aggravated by B vitamins...the weakness came on after I

> took megadoses of B vitamins (for the depression) that my LLMD

> approved. Though I really have no other symptoms...other than muscle

> weakness and depression.. .he is now recommending a long course of

> antibiotics to treat lyme/babesia! I have had little exposure to ticks

> in the last 20 years ...though I was attacked by them during one

> military summer in Ft. Bragg NC in 1983...I understand that very small

> percentage of ticks are infected and that infection does not always

> result when bitten...anyone have any thoughts? It seems crazy to

> begin an antibiotic regimen with so little evidence of infection... i

> hope you all are finding your way to health.

>

January 2, 2007

Just curious - have you done a CD-57?

D.

CC <cobchc@...> wrote: Thanks Ellen....I

don't beleive I have Lyme either...I have been

detoxing mercury from my body for nearly a year using a protocal

developed by Hall Cutler. Many Lyme symptoms are similar to

mercury toxicity symptoms and I'll bet many people who believe they

have lyme are actually mercury poisoned...lots of lyme docs have

noted heavy metal toxicities in their patients...coincidence? Maybe

not....God Bless you!

__________________________________________________

January 2, 2007

It can be helpful to get a Western blot antibody test from IGenex lab to see

if you have Lyme. _www.IGenex.com_ (http://www.IGenex.com) , 1-800-832-3200.

For those of us who do have it, antibiotics can be very helpful in reducing

our symptoms. After I tested positive, the antibiotic clindamycin took down

four longterm symptoms immediately: fibromyalgia, fatigue, some joint swelling

and chemical sensitivity.

January 2, 2007

The CD-57 is not a definitive test for Lyme, I don't think. What it does

show is the level of natural killer cells. My personal experience -- and we are

all different -- is that my CD-57 count is not reflecting the level of

discomfort I have from Lyme.

January 2, 2007

I think it would be helpful if you could get tested for Lyme and babesia.

Western blot for Lyme, through Igenex, MDL or Bowen labs, and I know there's a

test for babesia. Yes, a small percentage of ticks are infected; yes, the

infection can lie dormant. Sometimes it's a clinical experience, in how we

respond to abx. I had a fantastic response when I started on clindamycin after

testing postive for Lyme.

January 2, 2007

Hi ...if that is a test of some kind...I don't beleive I have

had that one...will see my LLMD on Thursday....but evertyhing I have

read about this disease indicates that testing is not definitive! Is

the CD-57 a definitive test?? Does anyone on this board have any

recommendations about getting a definitive diagnosis??

>

> Just curious - have you done a CD-57?

>

> D.

January 2, 2007

SO WHAT tests did you have? WHAT exactly were the results? The herbs are less

invasive on your system, but all depends on how long you really have had it, IF

you do.

Jim.

###

CC <cobchc@...> wrote:

Hello all....My LLMD has advised that he believes me to be infected

with Babesia and Lyme disease based on a test whuich he admits may not

be accurate. I have been struggling with depression for about 6 years..

a year ago I began experiencing weakness in my arms and legs..that

seems to be aggravated by B vitamins...the weakness came on after I

took megadoses of B vitamins (for the depression) that my LLMD

approved. Though I really have no other symptoms...other than muscle

weakness and depression...he is now recommending a long course of

antibiotics to treat lyme/babesia! I have had little exposure to ticks

in the last 20 years ...though I was attacked by them during one

military summer in Ft. Bragg NC in 1983...I understand that very small

percentage of ticks are infected and that infection does not always

result when bitten...anyone have any thoughts? It seems crazy to

begin an antibiotic regimen with so little evidence of infection...i

hope you all are finding your way to health.

__________________________________________________

January 3, 2007

In a message dated 1/3/07 2:07:44 AM, cobchc@... writes:

> will see my LLMD on Thursday....will see my LLMD on Th

> read about this disease indicates that testing is not definitive! Is

> the CD-57 a definitive test?? Does anyone on this board have any

> recommendations about getting a definitive diagnosis??

>

Good questions.

Some food for thought (sorry if any of this is redundant to you)â€¦

For starters, is your doctor an active member of ILADS (what I would call a

true LLMD), or at least on top of their material? Or is he/she more of a

" Lyme-friendly " doc?

For tick-borne organism testing, it appears that IGeneX is presently the best

lab, at least for Lyme, but probably also for the various co-infections. I

did not test positive until I had an IGeneX test (they have a website you can

check out, IGeneX.com). Even if you don't have an IGeneX lab near you, your doc

may have a test kit, or there might be a phlebotomist working in your area who

deos IGeneX testing and will send in for you.

Lyme is *supposed to be a clinical diagnosis*, despite testing (so the more

truly LL the doc, the better). However, false positive tests are rare (like if

you've had the Lyme vaccine), but false negatives are common.

The CD57 may be the best test around for " chronic " or " late-stage " Lyme. A

person can go " late-stage " early on. Depends on many factors. I had a CD57. I

see the abnormal results as another piece of the " diagnosis confirmation

puzzle. " At least some of the LLMDs were using CD57 testing to monitor abx

treatment, and mine seems to be doing this presently. I'm only on the herbals

but

still intend to recheck my CD57 at some point.

LabCorp is the lab for the CD57:

Click Here: Check out " LabCorp Patient Service Center Locator "

http://www.labcorp.com/psc/index.html

For a more recent article on the CD57:

Click Here: Check out " PDF Archives "

http://www.publichealthalert.org/pdf_format.htm

It's the August 2006 issue, p 8.

More on the CD57 by Joe Burrascano, a top ILADS Lyme doc:

Click Here: Check out " ILADS - International Lyme And Associated Diseases

Society "

http://ilads.org/burrascano_0905.html

I agree with what Ellen said about treating the symptoms. And I'd add to stay

away from steroids, especially if you may have Lyme.

Hope this helps some.

Good luck in your quest for health.

Ann

January 3, 2007

It is a measure of an immune cell - a type of Natural Killer cell - that is

nearly always depressed in chronic Lyme Disease patients, and not in other

chronic illnesses. It must be done through LabCorp or PathLab - not Quest. It

will be listed as the Stricker Panel NK CD-57 (or something close to that).

I think it's worth having as part of your decision-making process.

D.

CC <cobchc@...> wrote: Hi ...if that

is a test of some kind...I don't beleive I have

had that one...will see my LLMD on Thursday....but evertyhing I have

read about this disease indicates that testing is not definitive! Is

the CD-57 a definitive test?? Does anyone on this board have any

recommendations about getting a definitive diagnosis??

>

> Just curious - have you done a CD-57?

>

> D.

__________________________________________________

January 3, 2007

At this time, Lyme is the only pathogen known to lower this count. So while it

is not a definitive test, it's better than most. The test is not for all

Natural Killer cells - just one - the Cluster Designation 57 Natural Killer

cell.

And nope - it is not intended to reflect your level of discomfort. With many

diseases, the greater the immune response, the worse we feel.

D.

sfrobink@... wrote: The CD-57 is not a

definitive test for Lyme, I don't think. What it does

show is the level of natural killer cells. My personal experience -- and we are

all different -- is that my CD-57 count is not reflecting the level of

discomfort I have from Lyme.

__________________________________________________

January 3, 2007

Thanks Robin...I will undergo additional testing...is it possible I

was infected 20 years ago? I remember getting bitten by ticks but I

never got sick from it...no rashes etc. I have had little exposure

to ticks in the past 20 years....my only symptoms are periodic arm

and leg weakness and anxiety/depression. It sounds like most on the

board have suffered a lot more. A scientist I respect a lot says

that most lyme testing is a COMPLETE waste...with lots of false

postives...he beleives that mercury toxicity could be the real

problem....and that problem is completely solvable according to

him...His name is Hall Cutler.

>

> I think it would be helpful if you could get tested for Lyme and

babesia.

> Western blot for Lyme, through Igenex, MDL or Bowen labs, and I

know there's a

> test for babesia. Yes, a small percentage of ticks are infected;

yes, the

> infection can lie dormant. Sometimes it's a clinical experience,

in how we

> respond to abx. I had a fantastic response when I started on

clindamycin after

> testing postive for Lyme.

>

January 4, 2007

I believe lymes and mecury toxicity could go hand in hand, also candida growth.

I have lymes and candida and heavy metals. There must be something in our cells

that does not allow us to clear things, but other people with same exposure can

clear. We need alot more research. I guess we all have to do what ever possible

and seems right to be well.

Margo