RE: Dr. Rec/working the system

[Guest guest]

> I saw the

> top RHEUM in

> my State. She spent 5 hours on a Saturday morning - only

> with me, and

> charged for a comprehensive visit. And tests ordered were

> also covered by

> my insurance plan. At CFIDS doc, no insurance is accepted and

> the total

> amount is expected up front

My post may only relate to US citizens. I don't know much

about how insurance and taxs work in other countries and if

any of my comments will be applicable outside the US.

I try to " work the system " and I'm getting pretty good at it.

The key is to know exactly what your plan will pay for, what

they will pay part of, and what they will pay none of.

Sometimes there is a " backdoor " way to get things paid for.

Then you have to know exactly what you want (which tests,

which meds, etc). Then work the system to get the most. Also,

I don't hesitate to tell a doc that the suggested

test/med/supplement is out of my price range. You'd

be surprised at how often the doc can prescribe a med

that is just as effective, and much cheaper (and often

safer - and yes, I'm aware that this can't always be done,

but when possible...). I read up on

which tests I want. I go to my in-network doc and ask

for tests and show documentation. As many of

you know, getting docs to order the tests you want can be

difficult at best. But I kept hammering away and switching

docs. Finally I found a doc that will order some of what I

want, but will not treat for it. (will test for mycoplasma,

but will not treat it), then I take these results to out-of-

network doc and get that doc to treat.

An example of how I try to beat the system:

I found one neurologist that will order some of the tests

I want (like EEG) but will not let me try meds (like neurontin),

and I found another one who will let me try things different

meds (like neurontin) but thinks the testing is unnecessary.

So - I'm going to both. I got the EEG and MRI I wanted (need

documentation for ltd) and it only cost my $15 copay. After

the followup where I get the results I will probably not go back.

I own my records. If necessary, I can take these records to

an out-of-network doc. A little schizoid? Maybe, but I'm

finally getting what I want for what I can afford. I didn't

create the system!

Another example. I wanted to try Salvato's ATP/Glut/Lidocaine

injections (which are very helpful for me). No in-network

doc would let me try this (nevermind the stacks of data I

brought in - and executive summary). The CFS doc ordered

it right away. But in order for him to renew my script I

have to keep going back for very expensive visits. But

when my in-network doc noticed how well I did on ATP/Glut/Lidocaine

she was happy to keep renewing the script for me. So now

I can get the script renewed with a $15 office visit rather

than a $250 office visit.

I only started this " juggling act " about a year ago (and

I'm still learning more " tricks of the trade " ) and came

up with this plan after trying to figure out how to get what

I want for what I can afford. I don't like this, but I didn't

create the system!!!

I don't know if I'm explaining this adequately, its complicated.

AND with brain fog its difficult to keep everything straight

but family is helping me out with this. My brothers

are very financially astute and help me figure out various

cost scenarios.

Another bit of finagling that is my most recent triumph

- carnitine. I know carnitine is usually low in PWCs.

When I showed some carnitine articles to my doc she said

that if her regular lab did the test she would order it.

The carnitine test is a very standard, very ordinary

test that most labs can do. So, not surprisingly, my

carnitine levels were almost non-existent. It was easy,

even for an in-network doc, to write a script for carnitine.

Aren't scripts more expensive? yes and no - depends on

your policy. I wanted to try carnitine long ago, but

was out of my price range. I checked around - even at

the lowest prices - I calculated that an effective dose

of carnitine would cost about $250/month - just for carnitine.

Out of my price range. The prescription form of carnitine

is exactly the same. With my script coverage I can get

a three month supply for $18. Now, I don't know yet if

carnitine will be helpful for me or not (results so far

indicate benefit), but its only going to cost me $18 to

find out (vs. $250). BTW - I read up on effects of

very low carnitine levels - very frightening. I can

afford an $18 gamble - I can't afford a $250 gamble.

Another hint. If an in-network doc orders an out-of-network

test, I get stuck with the entire bill, but if an

out-of-network doc orders an out-of-network test, I can

submit the test for reconsideration and it is almost always

covered at 60%. In many health plans out-of-network scripts

can be submitted for consideration. Often coupounding

pharmacies sell natural supplements. I've found that

some supplements are cheaper if your doc orders them

from the compounding pharmacy. They are initially a little

more expensive than the health food store, but after

turned in for reconsideration, they can be much cheaper.

SAMe is a good example of this. However even with a

60% discount, this is too expensive for me, but maybe

someone else can benefit from this info. The first couple

times I told an in-network doc that I needed and out-of-network

doc to order the test (or vice versa) I thought they might

get angry (like turf wars) but I was pleasantly surprised

that all of them (so far - knock wood) have been more than

happy to accomodate me on this.

Also, I try to keep a running total of all medical expenses.

Because of my taxs situation a couple years ago I told my

docs to wait until January to order several tests. so

rather than having two years in a row where I didn't have

enough expenses for a deducton, I got most of the expensive

tests delayed until the next taxs year and had a substantial

deducton the next year. By delaying the tests I got about

$400 bigger refund.

Another taxs tip. You can take a medical deducton for

anything that your doc orders - including vitamins! Every

doc visit I have I take in a simple legal form listing all

the supplements I'm taking or want to try and ask them to

sign it (I say they can cross off anything they don't agree

with). Once signed, the cost of everything on that list

is a medical expense. This can include the cost of water

purifiers, air purifiers, saunas, massages, therapy pool

sessions, etc. You just have to get your doc to sign the

document (to be on the safe side, have the office staff

xerox a copy to put in your medical file) (With all

I " fight " docs about, this is the easiest) Also, whatever

is NOT covered by your insurance is deductble. For example,

if your insurance pays $60 of a $100 bill, $40 is deductble

(so is the copay).

Maybe everybody knows this stuff already and this post is

superfluous, but these things have been useful for me.

Patti

--

[Guest guest]

Where is Dr peterson now? Anyone know how to get hold of him?

Any one know of a cfids Dr who knows anything about Cancer & radiation

Tamoxifen with a cfids patient?

[Guest guest]

Hi Patti,

This is all excellent advice! I have had to doctor hop also and am doing

it again. LLMD is openminded but I do need an internist who will help pull

everything together, and am looking outside county right now. In my area,

docs know each other well and talk about patients - new doc I interviewed

called my PCP to tell her I was looking for someone else! Yes, we do have

to work the system!

Thanks!!

Chrisite

At 01:41 AM 12/15/99 -0700, you wrote:

>From: " Skari, M " <SkariPM@...>

>

>

>> I saw the

>> top RHEUM in

>> my State. She spent 5 hours on a Saturday morning - only

>> with me, and

>> charged for a comprehensive visit. And tests ordered were

>> also covered by

>> my insurance plan. At CFIDS doc, no insurance is accepted and

>> the total

>> amount is expected up front

>

>My post may only relate to US citizens. I don't know much

>about how insurance and taxs work in other countries and if

>any of my comments will be applicable outside the US.

>

>I try to " work the system " and I'm getting pretty good at it.

>The key is to know exactly what your plan will pay for, what

>they will pay part of, and what they will pay none of.

>Sometimes there is a " backdoor " way to get things paid for.

>Then you have to know exactly what you want (which tests,

>which meds, etc). Then work the system to get the most. Also,

>I don't hesitate to tell a doc that the suggested

>test/med/supplement is out of my price range. You'd

>be surprised at how often the doc can prescribe a med

>that is just as effective, and much cheaper (and often

>safer - and yes, I'm aware that this can't always be done,

>but when possible...). I read up on

>which tests I want. I go to my in-network doc and ask

>for tests and show documentation. As many of

>you know, getting docs to order the tests you want can be

>difficult at best. But I kept hammering away and switching

>docs. Finally I found a doc that will order some of what I

>want, but will not treat for it. (will test for mycoplasma,

>but will not treat it), then I take these results to out-of-

>network doc and get that doc to treat.

>

>An example of how I try to beat the system:

>I found one neurologist that will order some of the tests

>I want (like EEG) but will not let me try meds (like neurontin),

>and I found another one who will let me try things different

>meds (like neurontin) but thinks the testing is unnecessary.

>So - I'm going to both. I got the EEG and MRI I wanted (need

>documentation for ltd) and it only cost my $15 copay. After

>the followup where I get the results I will probably not go back.

>I own my records. If necessary, I can take these records to

>an out-of-network doc. A little schizoid? Maybe, but I'm

>finally getting what I want for what I can afford. I didn't

>create the system!

>

>Another example. I wanted to try Salvato's ATP/Glut/Lidocaine

>injections (which are very helpful for me). No in-network

>doc would let me try this (nevermind the stacks of data I

>brought in - and executive summary). The CFS doc ordered

>it right away. But in order for him to renew my script I

>have to keep going back for very expensive visits. But

>when my in-network doc noticed how well I did on ATP/Glut/Lidocaine

>she was happy to keep renewing the script for me. So now

>I can get the script renewed with a $15 office visit rather

>than a $250 office visit.

>

>I only started this " juggling act " about a year ago (and

>I'm still learning more " tricks of the trade " ) and came

>up with this plan after trying to figure out how to get what

>I want for what I can afford. I don't like this, but I didn't

>create the system!!!

>

>I don't know if I'm explaining this adequately, its complicated.

>AND with brain fog its difficult to keep everything straight

>but family is helping me out with this. My brothers

>are very financially astute and help me figure out various

>cost scenarios.

>

>Another bit of finagling that is my most recent triumph

> - carnitine. I know carnitine is usually low in PWCs.

>When I showed some carnitine articles to my doc she said

>that if her regular lab did the test she would order it.

>The carnitine test is a very standard, very ordinary

>test that most labs can do. So, not surprisingly, my

>carnitine levels were almost non-existent. It was easy,

>even for an in-network doc, to write a script for carnitine.

>Aren't scripts more expensive? yes and no - depends on

>your policy. I wanted to try carnitine long ago, but

>was out of my price range. I checked around - even at

>the lowest prices - I calculated that an effective dose

>of carnitine would cost about $250/month - just for carnitine.

>Out of my price range. The prescription form of carnitine

>is exactly the same. With my script coverage I can get

>a three month supply for $18. Now, I don't know yet if

>carnitine will be helpful for me or not (results so far

>indicate benefit), but its only going to cost me $18 to

>find out (vs. $250). BTW - I read up on effects of

>very low carnitine levels - very frightening. I can

>afford an $18 gamble - I can't afford a $250 gamble.

>

>Another hint. If an in-network doc orders an out-of-network

>test, I get stuck with the entire bill, but if an

>out-of-network doc orders an out-of-network test, I can

>submit the test for reconsideration and it is almost always

>covered at 60%. In many health plans out-of-network scripts

>can be submitted for consideration. Often coupounding

>pharmacies sell natural supplements. I've found that

>some supplements are cheaper if your doc orders them

>from the compounding pharmacy. They are initially a little

>more expensive than the health food store, but after

>turned in for reconsideration, they can be much cheaper.

>SAMe is a good example of this. However even with a

>60% discount, this is too expensive for me, but maybe

>someone else can benefit from this info. The first couple

>times I told an in-network doc that I needed and out-of-network

>doc to order the test (or vice versa) I thought they might

>get angry (like turf wars) but I was pleasantly surprised

>that all of them (so far - knock wood) have been more than

>happy to accomodate me on this.

>

>Also, I try to keep a running total of all medical expenses.

>Because of my taxs situation a couple years ago I told my

>docs to wait until January to order several tests. so

>rather than having two years in a row where I didn't have

>enough expenses for a deducton, I got most of the expensive

>tests delayed until the next taxs year and had a substantial

>deducton the next year. By delaying the tests I got about

>$400 bigger refund.

>

>Another taxs tip. You can take a medical deducton for

>anything that your doc orders - including vitamins! Every

>doc visit I have I take in a simple legal form listing all

>the supplements I'm taking or want to try and ask them to

>sign it (I say they can cross off anything they don't agree

>with). Once signed, the cost of everything on that list

>is a medical expense. This can include the cost of water

>purifiers, air purifiers, saunas, massages, therapy pool

>sessions, etc. You just have to get your doc to sign the

>document (to be on the safe side, have the office staff

>xerox a copy to put in your medical file) (With all

>I " fight " docs about, this is the easiest) Also, whatever

>is NOT covered by your insurance is deductble. For example,

>if your insurance pays $60 of a $100 bill, $40 is deductble

>(so is the copay).

>

>Maybe everybody knows this stuff already and this post is

>superfluous, but these things have been useful for me.

>

>Patti

>--

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

Hi again,

I had no idea these things were tax dectuctable - thanks again for great

info!!

Chrisite

te:

>From: " Skari, M " <SkariPM@...>

>

>

>Probably for US citizens only (but who knows)...

>

>Oh, I forgot to add this to my previous post.

>

>The cost of " special diets " can also be a medical

>deducton. For example, if you're allergic to wheat

>and your doctor says you must eat alternative grains.

>This is a little complicated. You can't, for example,

>deductx the entire cost of a loaf of alternative-grain

>bread, but you can deductx the additional cost of

>alternative-grain bread over the cost of a regular

>loaf of bread. And you can do this for every " special "

>diet things your doc prescribes (of course you need

>documentation). Aeiaaa, the record keeping!

>

>Probably no point in even mentioning this because most

>of us are too brain-fogged etc to keep records on this

>sort of thing, but it may be useful info for someone.

>

>Patti

>--

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

[Guest guest]

> I had no idea these things were tax dectuctable - thanks

> again for great

> info!!

I tell you, it can really add up! Especially all the supplements!

Patti

--

[Guest guest]

> This is all excellent advice! I have had to doctor hop also

> and am doing

Some of my docs are " single purpose docs " . I did a telephone

consult with a doc in NY because I wanted to try Naltrexone.

I call him my Naltrexone doc (but now my current docs see

how the Naltrexone works for me and renew without a problem)

Soon I will consult either with a HGH doc in the Carolinas

or a doc who specializes in GWS & CFS who lives in the desert.

One of the coolest things I've discovered is that it seems that

once you get started on something and do well on it, mainstream

docs are quite willing to continue the scripts (usually). Once

they refused (ATP/Glut/Lidocaine) and saw how bad I got and

actually brought it up to me at our next visit (don't you

think you should go back on - you were doing so well - YESSS!)

> it again. LLMD is openminded but I do need an internist who

> will help pull

> everything together, and am looking outside county right now.

Yes. I am sort of having a problem putting it all together.

I've really tried, but nobody is coming close to meeting

my needs, so I'm still juggling and piecing together myself.

I just talked to the desert doc tho, and he's really up on

stuff. Maybe he can be my main doc. (I keep hoping)

> In my area,

> docs know each other well and talk about patients - new doc I

> interviewed

> called my PCP to tell her I was looking for someone else!

EEUUUU. That's creepy!!! Sounds illegal too!

> Yes, we do have

> to work the system!

Maybe we can share tips. Actually I picked up the basics of the

carnitine tip from Mark Konlee, but it took awhile to see how

to get it to work with my insurance and in my situation.

Patti

--

[Guest guest]

Dr. is still at Incline Village...

----- Original Message -----

> From: Cbuf1920@...

>

> Where is Dr peterson now? > --------------------------- ONElist

Sponsor ----------------------------

[Guest guest]

Thanks Patti.

I'm getting insurance for the first time in 3 1/2 years next month so this

was very timely advice for me. How did you find out exactly what's covered

and what's not? Are they required to have a booklet that spells it all out

and to give you a copy?

Beverly

[Guest guest]

> I'm getting insurance for the first time in 3 1/2 years next

> month so this

> was very timely advice for me. How did you find out exactly

> what's covered

> and what's not?

That's sort of tricky. But

> Are they required to have a booklet that

> spells it all out

> and to give you a copy?

They should, but its vague. For example the brochures usually

state that x% is covered for in-network expenses and y% is

covered for out-of-network expenses. I couldn't find

anywhere in my info that if an in-network doc orders an

out-of-network test that it won't be covered at all. I

had to find this out the painful way - like " why didn't

you cover this? " . HOWEVER, I sent some of these in for

reconsideration and most were paid at 60%. I call it

reconsideration - but that's not what its called - I don't

know what its called. There was no info on this in the

brochure. Sometimes I get info by calling up the insurance

co and asking questions. If you are getting it through

work, sometimes people in the benefits dept will know

some of this stuff (but often not). Don't be afraid to

ask questions.

Also there is a grievance process where you can say

why you feel this thing should be covered. Sometimes

they actually reverse their decision, not often, but

worth the price of a stamp to try.

I haven't tried this yet, but there are people

who you can hire (are they called insurance advocates?

NOT lawyers) that can often get all kinds of things

paid for - ESPECIALLY if the test in question turns

out positive. This is not cost effective unless the

disputed bill is over $600.

Oh - one other tip I learned. For expensive/rare/etc

tests they say you should call in for pre-authorization

first. Well, I found out they almost ALWAYS deny

anything called in for pre-authorization. It took me

a year to figure out that if I really wanted the test

to just go ahead and have it done and often they will

just pay it. So my advice is don't ask for

pre-authorization.

BTW - my experience is with PPOs. HMOs are generally

MUCH more difficult to work with.

I do know this about HMOs. They say you MUST go to

in-network docs. This is usually true, but if your

primary care doc can make a case that there is no

in-network doc that has adequate experience in your

problem, they will sometimes pay for out-of-network.

A friend of mine was advised to go to National Jewish

(NJ)which was not in her plan's network. NJ has such

an excellent reputation that her insurance

company couldn't find anyone in their network that

good, so they paid 100% of everything at NJ. You

must have a primary care doc that will go to bat for

you - that's the biggest hurdle.

Patti

--

[Guest guest]

Re: Dr. Rec/working the system

> Where is Dr peterson now? Anyone know how to get hold of him?

>

Dr. 's office # in Incline Village, NV is 775-832-0989.

[Guest guest]

Thanks, I have heard of that Dr.

I will pass on this informatiion

[Guest guest]

Dr. Salvato in Houston, Tx specializes in AIDS, CFIDS and Cancer.

I do not know if she is up to speed on your particular question.

Her phone number is 713-961-7100

Hope this helps,

Marty Zavala

martyz@...

Re: Dr. Rec/working the system

>From: Cbuf1920@...

>

>Where is Dr peterson now? Anyone know how to get hold of him?

> Any one know of a cfids Dr who knows anything about Cancer & radiation

>Tamoxifen with a cfids patient?

>

>>This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>