Re: SORRY!/Treatment?

[Guest guest]

Regarding your misgivings (as I interpret it) on

receiving higher dose antibiotic treatment from

a Lyme literate physician vs. maybe receiving

lower dose abx from a non Lyme literate physician,

and how is one supposed to know what to do.

It is a personal decision, the medical community

has gone political on this one and left us the

patients holding the bag. If not for a few very

compassionate physicians out there treating

Lyme patients, a great many of us would be

a lot sicker with no hope in sight.

What medication or combination of medications

you take is going to depend on how the Lyme in

your body reacts. How much of the abx and what

combinations, if any, depends on the same thing,

how you and your body react. I was so reactive

with Amoxil at 3 grams per day given in 2 doses

that I had to split it in three doses to be able to

deal with my body's reaction. It took a year for

us to get enough bacteria killed off before I could

try IV infusions and before I could do that I had to

work my way up to being able to tolerate 2 grams

of the antibiotic I'd be receiving in the infusions.

Yet, after a few weeks on the infusions, I found things

changing in my symptoms that had not changed in almost

30 years, no matter what treatment I was given. It took

me 20 years to get diagnosed and to begin receiving

treatment from the onset of the all over body joint pain

that did not test to be rheumatoid arthritis. Yet, once I

was diagnosed and began receiving the oral antibiotic

there was no shortage of people, family included, who

did not want me to receive the treatment. They had not

done any research into Lyme and yet were telling me not

to take the abx treatments for various reasons, mostly

because Americans are over treated with abx in general.

Obviously, they didn't care to research anything and were

trying to use scare tactics on me, and even a physician

I'd seen for years attempted the same thing.

I told him I respected him but that I was not about to

confuse the issue by going to yet another doctor who

would possibly state (for their own reasons) that I did

not have Lyme and then confuse the issue of treatment

to the point I wouldn't be able to receive treatment of

any kind. I did ask him to keep his opinions to himself

and not chart them in my medical records since they

were strictly his opinion not based on my medical history.

The fact is, any overuse of antibiotics has come to the

baby boomers and those younger, from the swine,

poultry, and cattle industries, through feeding their

stock antibiotics regularly to keep their losses low and

their profit margins high! So, if anyone is to blame it's

them not the few times we've gone to the doctor sick

and needing to be at work when we asked for abx

or something to help us get well sooner. Let's please

put the blame where it belongs. Now, these industries

are finally being forced to remove the abx from their

feeding plans for the " potential food " that we will be

eating.

Whether to embark upon the treatment for Lyme with

a Lyme literate physician who does understand about

the treatments for Lyme and that if too low a dose of abx

is used the spirochetes will only become resistant to the

antibiotic being used and not killed off, as opposed to

a regular physician meaning well, wanting to treat you,

who will not necessarily attend all of the Lyme conferences

etc. to keep up on the latest abx and combinations to be

used by other Lyme literate physicians which are helping

their patients. Lyme is so very complex that the Lyme

literate physicians treating Lyme patients daily must keep

up on what the other Lyme literate physicians are doing

and the different ways patients are responding to treatments

along with the unusual symptoms being reported by the

other physicians. This is why it takes a physician who

treats Lyme patients on a daily basis, i.e. Lyme literate

physicians, to effectively treat people with Lyme disease.

If I have misunderstood what you wrote, and all of this

is perfectly clear to you, please accept my apology. It

is not my intention to repeat what you already know. I

just wanted you to understand why it takes the Lyme

literate physician to diagnose and treat Lyme and why

it's so very important. These doctors are not out there

getting rich, and are more likely to get slapped with a

summons by the medical board because others do not

understand and do not take the time to research and

or simply do not care. The loss of revenue to Lyme

endemic Cities and States is real, so if doctors diagnose

and treat " too much Lyme " in a given area, it's likely

that a community may become Lyme endemic with all

that entails. It's the way of the money people to follow

the money and forget the victims of the disease, to call

us fakers, liars, or less lovely names, all the while doing

all possible to inhibit diagnosis and treatment, because

the diagnosis has to be reported to the CDC.

Had I even known that Lyme was a possible differential

diagnosis for the many symptoms I've had for too many

years, I would have sought out a Lyme literate physician

myself many years ago and asked to be tested. But, living

in a non endemic area, all I knew was that Lyme was some

kind of disease caused by ticks. That's it. It's also why

now, I have my e-mail read " Lyme Awareness Now! "

If I've " bugged " (pun intended) anyone, please write to me

privately and put in the subject line so I won't miss

your e-mail. It would be wrong to bring any kind of discord

to the list. I finally have hope once again after so many years

of going from doctor to doctor, having treatment after treatment,

to no avail. The antibiotic infusions have shown me that this

disease can be brought into remission though I am no at that

stage, just having symptoms reverse themselves or get some

better after suffering with them most of my life, lets me know

this is the right kind of treatment, regardless of what the

naysayers might want me to believe. Make no mistake, you

may well strain friendships and relationships with family members

simply because they don't want to learn about Lyme and have

their own preconceived opinions, just like doctors do. I'm down

to 7 friends now, my spouse, my Lyme literate physician, 2 dogs,

and 2 very good friends, who are sick with other chronic illness.

I'll keep what I have for friends, the others don't understand and

believe I " should have been over it " years ago, but unfortunately

my body didn't cooperate, it only got worse.

Wishing us all health and freedom from pain,

both physical and emotional -

lyme_e@... wrote:

> From: lyme_e@...

>Snip

>I now understand what a lyme physician is and the coinfections, but still have

the other questions. But how do you know who is right? And how do I see

Burrscano's treatment?

[Guest guest]

In a message dated 9/1/99 12:12:18 AM Central Daylight Time,

swsftwtx@... writes:

<<

The fact is, any overuse of antibiotics has come to the

baby boomers and those younger, from the swine,

poultry, and cattle industries, through feeding their

stock antibiotics regularly to keep their losses low and

their profit margins high! So, if anyone is to blame it's

them not the few times we've gone to the doctor sick

and needing to be at work when we asked for abx

or something to help us get well sooner. Let's please

put the blame where it belongs. Now, these industries

are finally being forced to remove the abx from their

feeding plans for the " potential food " that we will be

eating. >>

Your statement is entirely true but the last line I would be hesitant to

fully embrace.

Supposedly, there has been govt. intervention that would stop the feeding of

abx to cattle, but has there been an " agreement " that is going to be

enforced? I haven't seen it in the paper anywhere. I know there was an

*agreement* that the cattlement would stop feeding ground up cattle as feed

to cattle in order to stop Mad Cow Disease in the US, but my understanding is

that it got so watered down it was practically useless.

[Guest guest]

To be " honest " I wrote that part about " stopping the

use of abx " with more hope than faith that it will

really happen. And, while I was reading your

comments, it came to me that the govt. as well as

the " icons " in these industries know very well why

it's taking such high doses of abx to treat Lyme

patients and I thought they might have those, you

know, under the table agreements, to keep Lyme

as it is maintaining the status quo, very few of us

get very well very quick, mostly because it's very

hard to get the amount of antibiotics we truly

need. Our doctors are being sued right and left

and we're left out in the cold, so to speak.

Please excuse my pessimism, living in an non

endemic state carries it's own weird set of problems

regarding treatment amounts and lengths of the

treatment.

Wishing us all health and freedom from pain,

both physical and emotional -

Golfdawg@... wrote:

> From: Golfdawg@...

>

> In a message dated 9/1/99 12:12:18 AM Central Daylight Time,

> swsftwtx@... writes:

>

> <<

> The fact is, any overuse of antibiotics has come to the

> baby boomers and those younger, from the swine,

> poultry, and cattle industries, through feeding their

> stock antibiotics regularly to keep their losses low and

> their profit margins high! So, if anyone is to blame it's

> them not the few times we've gone to the doctor sick

> and needing to be at work when we asked for abx

> or something to help us get well sooner. Let's please

> put the blame where it belongs. Now, these industries

> are finally being forced to remove the abx from their

> feeding plans for the " potential food " that we will be

> eating. >>

>

> Your statement is entirely true but the last line I would be hesitant to

> fully embrace.

>

> Supposedly, there has been govt. intervention that would stop the feeding of

> abx to cattle, but has there been an " agreement " that is going to be

> enforced? I haven't seen it in the paper anywhere. I know there was an

> *agreement* that the cattlement would stop feeding ground up cattle as feed

> to cattle in order to stop Mad Cow Disease in the US, but my understanding is

> that it got so watered down it was practically useless.

>

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