Re: 3 for 3 Marta PET Scan

[Guest guest]

Before your doctor spends money on an expensive test maybe you should ask

your doctor specifically what he hopes to find out with the PET scan and how

he hopes that information will convince the insurance company give you IV.

I can't remember what a PET scan is except that I think it's similar but

better than a CAT scan and more expensive. Insurance companies can get mean

if doctors are ordering expensive tests that aren't necessary. I'm not

saying I know this isn't necessary but it seems important to make sure it

is. Anybody else get a PET scan out there for confirming diagnosis?

Be well,

beth

infected w/ Bb in 1984 in California

Undiagnosed bullseye rash

Low grade symptoms through 98

Late neuro symptoms 1/99

Diagnosed 8/99

No ELISA, Western Blot equivocal w/ 4 out of 5 Bb specific bands positive

or equivocal indicative of OLD infection

Abx's: 6 wks oral doxy, 13 wks IV Rocephin, Rocephin w/ Flagyl 1500 mg.

Currently 1000 Flagyl w/ 500 Zithromax

Live in San Francisco

Re: [ ] 3 for 3

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi Joan,

> Sorry for my delay in responding to this, I am still having computer

> problems, too lazy or too sick to try to fix them. I get on for a bit and

> crash, and just shut the darn thing off.

> I am so sorry to hear your hubby just got dx'd.....this is terrible.

It

> is amazing that ticks are biting this late in the year, what happened to

> April to September???? I guess the warm weather is the reason they are

> still around. This is why I love it when the weather drops below 32

> degrees. Arthritis may hurt but heck the ticks won't be biting. I am

> rambling, sorry.

> I see you and I are both in the same boat, begging for IV.....it is

sad.

> I hope your doctor can convince your insurance carrier to pay for it too.

> None of the orals have done much for me either, I am currently on Zith and

> Ceftin, and it just gives me the monthly herx and not too bad of one at

> that.

> I don't blame you for having to delete some mail, it can get

overwhelming

> at times, would digest be better for you???

> I am waiting now for an approval from my new insurer " Prudential " for

a

> PET scan my doctor ordered last month. I have to go to a big hospital in

> Philadelphia to have it done as no one closer does it. I have no idea why

> my doctor thinks this test and results from it will convince my insurer to

> pay for IV, but I hope he is right. In any event, wish me luck.

> Hugs,

> Marta

>

> From: " Joan " <Namkrats3@...>

>

> > UGH!!!

> > Well, it finally happened...my hubby was just dx'd with Lyme disease

> > :-((( !!!

> > That makes us 3 for 3 (not counting our pups), and our LLMD thinks that

> > we didn't catch it in time! He's doing a WB and LUAT, but has given a

> > him clinical dx of Lyme disease regardless of how they come out. He has

> > the rash, arthritic sx, and was bitten 2x in the last 2 months, plus

> > many previous bites.

>

>

>

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

[Guest guest]

In a message dated 01/09/2000 5:47:35 AM Eastern Standard Time,

mlmccoy@... writes:

<< Wish me luck, still waiting for the damn approval, but I think it is my

doctor's office and not the insurer.

Hugs,

Marta

>>

Marta, It is most likely the insurer. I work for a doctor and I can tell you

that even when we make requests for approvals like yours it takes days for

the insurers to get back to us and we usually have to call them several times

for an answer. We once had a patient with such a severe headache it could

have been an aneurysm. We called immediately for an approval for a CT scan

on him and they said it would be in our office by Monday. This was Thursday.

We then advised the patient to just go directly to the hospital as an

emergency situation. (Thank God he was ok...all was negative and it was most

likely a severe " Lyme " headache. We all know how those can be!) Can you

imagine the nerve of this insurance company though??? It's a travesty what

is going on. And it isn't isolated to Lyme patients although we seem to have

more obstacles than others. Something has to be done with our healthcare

situation in this country.

Frustrated...

Lorraine

[Guest guest]

,

Thanks for your input always valued and appreciated, I never heard of any

LD patients having this test done and I was skeptical too, he says that it

will show how my brain is working???? Here's a brief explanation of the

test:

PET Scan: Tracing Brain Functions

One of the most modern techniques being used to study the brain is positron

emission tomography (PET). Superficially, the machines look very much like

CT scanners, but on the inside they are quite different. A PET scan is

accomplished by administering a small amount of a radioactive substance to a

patient, waiting a short while, and then taking pictures to see where that

substance has gone to. PET scanning thus reveals information about the

function of the brain. This is different from simply looking at the

structure of the brain as CT and MRI scanning do. PET has been used

extensively by research doctors to try to figure out what parts of the brain

are involved in many different neurologic illnesses including seizures,

schizophrenia, and Parkinson's disease. PET has also been used to answer

other interesting questions, such as what exact part or parts of the brain

are involved in specific activities, like solving math or word puzzles.

Like I said, never heard of a Lyme patient having this done, but don't

recall any of having three lesions in their brains like I do either. The

lesions are on both sides of the brain, and one in the middle too. I am

just concerned that if I wait too long for treatment I will develop even

more. I am having difficulty talking and finding words, much worse than

before, and memory is terrible.

Wish me luck, still waiting for the damn approval, but I think it is my

doctor's office and not the insurer.

Hugs,

Marta

> From: beth <elsbeth@...>

>

> Before your doctor spends money on an expensive test maybe you should ask

> your doctor specifically what he hopes to find out with the PET scan and

how

> he hopes that information will convince the insurance company give you

IV.

> I can't remember what a PET scan is except that I think it's similar but

> better than a CAT scan and more expensive. Insurance companies can get

mean

> if doctors are ordering expensive tests that aren't necessary. I'm not

> saying I know this isn't necessary but it seems important to make sure it

> is. Anybody else get a PET scan out there for confirming diagnosis?

>

> Be well,

>

> beth

[Guest guest]

In a message dated 01/09/2000 5:47:36 AM Eastern Standard Time,

mlmccoy@... writes:

<< PET Scan: Tracing Brain Functions

One of the most modern techniques being used to study the brain is positron

emission topography (PET). Superficially, the machines look very much like

CT scanners, but on the inside they are quite different. A PET scan is

accomplished by administering a small amount of a radioactive substance to a

patient, waiting a short while, and then taking pictures to see where that

substance has gone to. PET scanning thus reveals information about the

function of the brain. This is different from simply looking at the

structure of the brain as CT and MRI scanning do. PET has been used

extensively by research doctors to try to figure out what parts of the brain

are involved in many different neurologic illnesses including seizures,

schizophrenia, and Parkinson's disease. PET has also been used to answer

other interesting questions, such as what exact part or parts of the brain

are involved in specific activities, like solving math or word puzzles.

Like I said, never heard of a Lyme patient having this done, but don't

recall any of having three lesions in their brains like I do either. The

lesions are on both sides of the brain, and one in the middle too. I am

just concerned that if I wait too long for treatment I will develop even

more. I am having difficulty talking and finding words, much worse than

before, and memory is terrible.

Wish me luck, still waiting for the damn approval, but I think it is my

doctor's office and not the insurer.

Hugs,

Marta

>>

Marta, Pet Scan is very good, also very expensive. Many Ins. companies will

only cover it for a very few conditions cellberal accident (Aneurysm). A

neurologist is trying to get the test approved for me. it looks like we may

have to go with a Spec. Scan with Diamox which should show the blood flow and

any restrictions to affected areas of the Brain. My ins. co. refused to pay

or the Pet Scan hopefully yours will come through but if they won't, you

might talk with the Dr. about a Spec Scan with Diamox as an alternative.

Regards Carol - PS Marta thanks for the info you send for my friend in SC.

[Guest guest]

In a message dated 01/10/2000 4:32:25 AM Eastern Standard Time,

mlmccoy@... writes:

<< I just switched to Prudential, HMO from Aetna US

Healthcare, how tough are they if you know???

Hugs,

Marta

PS: Think I will take the girl a gift next time I go, and tell her someone

told me how tough she has it. >>

Marta! That is so sweet, and a great idea. It will make her see that you do

appreciate her efforts. I can tell you too that I am sure she understands

your frustration. We often feel it more than the patients but they don't

realize it . Then someone like you brings us a box of candy or something

and we think " gee they really do appreciate our efforts! "

As for Prudential and Aetna US Healthcare, they are not an insurance that we

accept, although we do have a lot of patients with it. The patients that

come to us out of network just pay us up front and then submit their bills to

their insurance company for usually an 80% reimbursement. I haven't heard of

too many problems with them (Prudential) although I am recalling a medication

or IV approval problem. Eventually they usually relent though in medically

necessary situations. It's just a lot of red tape that I can assure you

aggravates the doctors and staff as much as the patients. My doctor even

advised his son not to go into medicine because you can't truly practice

anymore. It's become a business and he spends more time dealing with

insurance problems than patients. It's insane. What happened to the good

old days when you were sick, the doctor prescribed treatment, and everyone

respected his orders?? Today a doctor must worry first about his license and

then the patient. There is something wrong with this picture.

Marta I thank you and I am sure your doc and his staff will thank you for

your understanding. And sometimes you do catch more flies with honey than

vinegar .

Let us know how it all works out

Blessings,

Lorraine (Medical Secretary/Asst.(part time!!) and Lyme, Babesia, Ehrlichia

patient)

[Guest guest]

Hi Lorraine,

Thanks for telling me how this works, I was blaming one particular girl

in my doctor's office, but you know, I have a lot of nerve doing that

too...as the poor girl is so overworked as it seems she is the only one

there who knows how to do everything that needs to be done. Now I feel

really bad....I was going to call this morning to see how things were

progressing with this approval, but I guess I should wait till tomorrow and

give her some time to work on it. I appreciate your information and will

definitely keep this in mind. I am certainly only one of hundreds of LD

patients this doctor cares for. Since you have some experience in doctors

and insurance office, I just switched to Prudential, HMO from Aetna US

Healthcare, how tough are they if you know???

Hugs,

Marta

PS: Think I will take the girl a gift next time I go, and tell her someone

told me how tough she has it.

> From: Cheers4U@...

> Marta, It is most likely the insurer. I work for a doctor and I can tell

you

> that even when we make requests for approvals like yours it takes days for

> the insurers to get back to us and we usually have to call them several

times

> for an answer. We once had a patient with such a severe headache it could

> have been an aneurysm. We called immediately for an approval for a CT

scan

> on him and they said it would be in our office by Monday. This was

Thursday.

> We then advised the patient to just go directly to the hospital as an

> emergency situation. (Thank God he was ok...all was negative and it was

most

> likely a severe " Lyme " headache. We all know how those can be!) Can you

> imagine the nerve of this insurance company though??? It's a travesty

what

> is going on. And it isn't isolated to Lyme patients although we seem to

have

> more obstacles than others. Something has to be done with our healthcare

> situation in this country.

>

> Frustrated...

> Lorraine