Re: DENTAL/LYME/PUBLIC HEALTH SERVICES/DELAYED ORGASMS/ET AL . . .

[Guest guest]

-

Once again....you crack me up!!!

I am glad you did not mention my name when you saw this dr. to be switched to

Wellbutrin...well, actually, you could have said " Dr. Sue Massie had personal

experience with Prozac, Paxil, etc and then found Wellbutrin in which she

realized that she DID NOT use up ALL of her alloted orgasms in life~~~ "

Sorry, it IS Valentine's Day.

Anyway, like we talked on the phone....don't waste useless energy and time on

the ignorant. Don't worry about lawsuits, filing claims, etc. WHAT IS

IMPORTANT IS TO GET YOU BETTER!! to do what is necessary so that you can get

stronger and THEN you can proceed in this help for being an advocate for

lyme. Manipulate, use, whatever it is that you need to do to get what you

need, antibiotics.

Another suggestion I have given is to take info with you~~ If you are sitting

there before whatever ignorant dr. and have articles, say, on Prozac and loss

of libido, than you are credible. To just say whatever, you sound like a

hysterical woman. BACK UP YOUR STATEMENTS. Bring materials.....Magazines,

internet, Merck Manual, whatever.

HANG in there, Jen.

I am rooting for you.

sue in nj

sue massie

[Guest guest]

,

I think you need a LL attorney.

Rita

[Guest guest]

If I were looking for a LL attorney, my first call would be to the Lyme

Disease Foundation, at lymefnd@... or (860) 525 2000. If they didn't

know of someone in my state, I'd call LL attorney Ira Maurer in White

Plains, NY. If that failed, I'd start calling the support groups or post to

this and other LL to semiLL groups.

Does anyone know a LL attorney in FL?

Rita

[Guest guest]

Dear Rita,

I LOVE your postings! Right to the point!

Now where does one find an LL attorney?

> ,

>

> I think you need a LL attorney.

>

> Rita

[Guest guest]

,

How about reporting them to the medical board for this behavior?

[ ] DENTAL/LYME/PUBLIC HEALTH SERVICES/DELAYED ORGASMS/ET AL .

.. .

Hi Donna,

Thanks for enjoying the vertigo posting. Yes, humor is often our

salvation, when in the darkness of the moment, we cannot see our

Higher Power working.

As to the dental problems: I will check with my LLMD about any

suggested protocol before a root canal is done. Hopefully, they

won't have to do one, but the hole is big and it's been a while.

Also, I am at the mercy of the County Medical System here, as I have

no insurance right now. I swear I am going to write a book about

this experience. They treat me (and I assume everyone who deals

with them) with such ignorance of Lyme Disease that I could just

scream.

In fact, I HAVE raised my voice from time to time. And quickly

learned NOT to do that! None of the clinic Drs. are interested in

becoming educated about Lyme Disease and they all say (with the

exception of their Infectious Disease Dr, who has insisted I get 21

days of IV Rocephin) from physicians to psychiatrists that there is

NOTHING wrong with me. This is even AFTER they have read my chart

and it clearly indicates that I have late stage chronic Lyme and test

positive beyond all CDC requirements.

Still, they have the audacity to say that it is all in my head. They

refuse to listen to my LLMD, because they think that ANYONE who

believes this disease exists must be a quack. Oh boy, I'm angry

about this. Can you tell? I could write such a great stand up act

about their lunacy and the agony it costs me as I await my IV

Rocephin that they are forced to give me, yet don't believe in it.

Hysterical stuff. Grrrrrrrrr.

Here's an example, should you dare to read beyond this point: Ever

since shortly after the onset of Lyme in 1987, I began to have severe

depression and panic attacks. Who hasn't, right? I was clearly

diagnosed and have been on medication ever since. Today, at the

clinic, the psychiatrist said " Why do you take these medicines?

There is nothing wrong with you! " The man just MET me! I remained

calm and explained that these were symptoms of Lyme Disease and that

I would love to be off of psychotropic drugs and hope to be after

treatment someday, but don't think that would be very wise at this

moment.

He said, " You don't have depression or panic from Lyme Disease. " I

explained that, in face, I did, as none of these symptoms ever arose

BEFORE Lyme Disease. He made a funny face that looked like he was

having a bad gas attack. I then explained that I wanted to go off of

the Prozac and switch to Wellbutrin due to some sexual dysfunction

issues, as I politely put it to him. " Ah, well you don't have that

from Prozac, " he said with his neat, clipped Indian accent. Yes, I

explained, I did have that from Prozac and I had had it for many

years and I would like to NOT have it anymore, please. Besides, many

Lyme patients prefer Wellbutrin exactly for that reason. He made

another peculiar face and replied, " Well, I won't switch you for that

reason. " Now here's where I raised my voice and, admitedly, lied a

teeny bit, " Dr. How you you like to not be able to have an orgasm for

12 years? " (Actually, I should have used the term " delayed orgasm " -

but I was MAD!) He actually SHRUGGED and said, " Come back and see me

in 3 months. Good Day. "

GOOD GRIEF!

And my primary physician at the Clinic, says, I look fine, the tests

must be wrong and there is no such thing as late stage Lyme Disease.

I invited her to Dr. Donta's seminar here in Tampa, but she said " No,

thanks. " When I told her I had been studying this illness for 15

years and knew a few things about it, she began screaming at me, " I

AM THE DOCTOR, YOU ARE THE PATIENT. I CANNÓT TREAT YOU. I AM WALKING

OUT OF THE ROOM RIGHT NOW, IF YOU KEEP TELLING ME YOU KNOW MORE ABOUT

YOUR CONDITION THAN I DO! " (I am amazed that there are still doctors

like this out there.)

As it was only the second time I had seen her, and as she headed for

the door, it was all I could do to keep from laughing at her

histrionics. I just calmly said, " Well, since you are the only

doctor here, you cannot leave me without treatment, so let's not take

any of this personally, shall we? " And this is a WOMAN DR. Is there

no mercy??? LOL. And I await her signing off on the Infectious

Disease Specialist that SHE referred me to in order to start the IV

Rochephin, to treat the disease she does not believe I have, but

which thankfully will be administered by the local Hospital and not

this clinic from hell.

Now I'm thinking are there other Lymies out there who have lost their

insurance and have been treated by public health facilities who have

mistreated them like this? If so is there any legal recourse? It is

unreal!

Ah, well, this is Florida. I can see I have a LOT of advocacy work

to do here. Now I know why my LLMD wants to start a Clinic of Angels

for people, who have lost insurance and have Lyme Disease. He's got

my vote. And to be fair, he will advise me over the phone about

things and see me, when necessary.

Well, didn't I go off on a nice tangent? I shall have to change the

subject line, now. Hmmmm, I wonder if I should use the word " orgasm "

in there . . .

Seriously, AFTER I get my treatment, does anything know of any LEGAL

recourse? I'd hate to have others go through this kind of abuse.

Thanks for listening to my rantings and ravings.

Living in Faith

> , find a lyme literate dentist before you have a root canal or

get a

> second opinion. There are so many issues to deal with when a root

canal is

> done, espec. with chronic infections being present. There are

dentists who

> know about these things....also if you can locate a dentist who is

younger,

> has laser dentistry and will work with your llmd....all the better.

>

> Best wishes...hope you won't need a root canal. I'm off to the

dentist next

> week with the same concerns.

>

> Donna

>

>

>

[Guest guest]

I believe if more of us sued the nonLL, all this bs would happen a lot less

than it does. We also need funds to pay for chronic Lyme treatment. Who

better to pay for our long term, expensive treatment than the people who

caused the problem?

Rita

[Guest guest]

Thanks, Rita.

You are so helpful!

Love,

> If I were looking for a LL attorney, my first call would be to the

Lyme

> Disease Foundation,

[Guest guest]

Hi : I know there is legal recourse but there may be those statute of

limitations that create havoc for those of us who have been diagnosed for

over a year I think. But I think advocacy is a worthy action to save others

from our plight. There will be the day when more people in public office

will have a loved one with this disease and then we will really see a change

in public policy. I worked at Cedars Sinaie in LA at the beginning of the

AIDS epidemic and noone had seen the -what at the time- was bizarre symptoms

in young and formerly healthy people-like candida esophaghitis and KS. It

took a tremendous spear head professional effort among the AIDS community to

find the funding for research and at least a mode to increase survival rates

among many of those afflicted and very ill or dying. I think that many

people who aren't knowledgable about lyme and how terribly serious it is

underestimate the mortality issues around untreated lyme. This is seemingly

where we are in the struggle to get our illness recognized by the

conservative medical associations who have been socialized in med. school to

stick by their professional peers and not stick their necks out to fight for

acknowledging that, as the dean of Harvard medical school once told Harvard's

" esteemed " medical alumnae that 1/2 the knowledge they learned in medical

school was erroneous. The problem being that noone knew which half was

wrong. So most doctors want to pay their loans, make a living they imagined

they would and survive into an early retirement. The insurance companies

have compounded the problems of physicians learning about emerging infectious

diesease because their fee reimbursement pays only for the typical 10 minute

visit and quick dismissal of the patient so that the next one can be seen.

On top of that, I truly wonder how many practicing MDs who seem so uncaring,

callous and downright ridiculous in their approach to complex patients...ever

read their medical journals or keep up with the latest medical issues.

Having trained with MD fellows at Harvard and UCLA, the doctors then were

always abreast of new changes. Hippocrates chided physicians to understand

the mind, body, soul and especially the environment of each patient and use

the scientific method as well as the intuitive method to diagnose and treat.

We are in the midsts of a giant unpheaval in medicine and molecular science.

Thanks to new technologies, like the PCR and other DNA mapping techniques and

with medical schools embracing new realities...putlic policy changes in

allowing physicians to treat their patients without the cost maneuvering of

insurance companies will illnesses like ours in the future be recognized and

treated in a timely and humane manner, affording future generations the hope

that noone will have to suffer as we in the lyme community and the heroic

doctors who treat us have had to endure.

Is this the dark ages of medicine? I think so and yet, still, there is a

glimmer of hope in the future. Great souls are born from times such as these.

God help this world...and especially our lyme community.

Donna