kam
Honored Contributor (10K+ posts)
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posted
I have a scheduled hearing regarding the insurance providing Ketek Monday.
I received a packet in the mail from the insurance after the first hearing did not happen.
I had filed for a telephone hearing and they had misfiled the paper work so i was not informed the hearing was cancelled.
Good thing I did not have someone take me down the hill for the hearing.
The packet I received requested that I be sent an outline of the respondents (insurance reasons for denial)
Note: if they had not misfiled the request for a telephone hearing, I would have received this outline the day of the hearing. So, I am thankful it worked out like it did.
The reasons are:
[ 15. April 2007, 09:37 AM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
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posted
Ketek is a dangerous drug. Liver failure.
...OK I am aware of this. Doc is having me tested every two weeks.
Ketek should not be used for patients with liver disease (no lab work)
...OK I can give them lab work. My liver has been OK.
The reason for ketek being ordered by PCP is that prior doctor prescribed it.
..OK this could be a problem. (Lyme doc has been providing KEtek for me since Oct 2006 and it has been helping. I like not waking up feeling like a truck ran me over. I also like that my brain is starting function better but that is catch 22 for me.
...Since I am on the state's insurance it is tricky seeing an out of network doc. I am also going through the steps to get him approved as an out of network doc. First two steps were denied. Hearing is next. This is not looking good.
Treatment of lyme disease does not include ketek.
...yes in their books, my body is telling me differently.
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kam
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posted
Indication for use of KEtek does not include ketek.
...sounds like the same as above
treatment of late phase lyme disease does not include abx.
...this is not good.
no strains of lyme disease are yet described to be resistant to antibiotics
not indicated for multiple reasons:
..dangerous ..we don't even know why it was recommended
..I have asked for a postponment of the hearing Monday. I have sent two emails. First email was not received. Do not know where things stand with second email as per conversation with rep from pHP and the adminstrative offices.
My concern is what are my choices.
My PCP is positive and wants to do what she can. Her nurse is negative and says the new director of PHP denies, denies, denies.
She said over the years it has depended on who the director is on what they are able to get through.
My LLMD doc is working on getting more ketek for me so that is not the problem.
And I can work on that from my need too.
I do need to have continued lab work done. I also am being provided amoxy, and doxy from insurance and water therapy...possibly. Hopefully, they will continue to provide this.
Note to me: it will be OK
It will be OK
It will be OK
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
KAm, We ALL know we have co-infections with this disease,statisitcs prove it!! So HAVE you been for sur dx'ed with a co-infection??
Sometimes butting heads with so called professionals using the word 'lyme' can be VERY frustrating given all the bad info of the IDSA.
I think we get LESS resistance IF we use the words like Bart,erlich., babs, cpn, and others just like it. The same drugs with the same doseage is used for them. Go with what you can sidetrack them with successfully.
Comparing apples and oranges,,,if it looks like an apple,acts like an apple,,,smells like an apple,,and tastes like an orange,its an orange.
IF you have NOT been dx with any co's use your symptoms to GET a dx of as many as you CAN!!! Use them to your advantage. Docs will treat bartenella,babs, and all those its the "L" word they are completely scared of. Dont use it,call it a coifection of the others you are positive for!! DONT use the "L" word,,and keep them from bristoling up to it!! Too much controversy to win with that dx!!
Is Ketek used in treating "vally fever"? Can you take that angle?? What else can you invent for its use?? And document??I can document being--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
No wonder they are fighting Ketek tooth and nail. I just tried googling it to see if any discount drugs were available. Canadian Ketek is like $4.83 a PILL. Yikes, cheapest they said on a seek site was something like $3.50 or so and alot of it was $7.50 a pop. How many pills a day do you take,,,or did???
Isnt there any old school drugs that can do the same thing??? They are real cheap,comparatively!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Kam, I think my doc *may* have used some of my co-infections to get my insurance to cover everything, too... So I'm seconding don's idea to use all your diagnoses and downplay the "L" word!
Sometimes they respond better to treating other diseases.
Additionally, maybe you could check and see if you've been tested for any of the not so common co-infections... I was off the charts for legionella and salmonella, not usually TBIs, but I think those diagnoses might have helped me along a bit.
It will be ok. It will be ok. It will be ok.
Positive thoughts coming your way...
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Tincup
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Member # 5829
posted
KAM..
Actually Just Don has the right thoughts.
I KNOW!! Hard to believe, isn't it? HA!!!
You said.. The reason for ketek being ordered by PCP is that prior doctor prescribed it. ..OK this could be a problem. (Lyme doc has been providing KEtek for me since Oct 2006 and it has been helping.
OK... DOCUMENT the improvement you've had by making copies of your symptom notebook you've been keeping with ALL the details... the more the bettter. You know.. the diary we all keep.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
You said..Treatment of lyme disease does not include ketek.
OK... Prove to them there are over 300 strains of Lyme and at least 3 known and documented forms. Use the idiots literature when you submit documentation.. NOT the ILADS stuff.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
You said.. Indication for use of KEtek does not include ketek.
Again.. see Just Don's post. Also provide Durland Fish's writings about all the new infections/strains of coinfections and Lyme.. and how they have discovered new ones so fast they haven't even named them yet. Then reference back to your diary showing you are doing better.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
You said.. Treatment of late phase Lyme disease does not include abx.
Actually .. according to IDSA themselves.. it DOES!!! They recommend re-treatment if documented symptoms are there. If they are saying "late PHASE".. you've got them!!!
Toss the IDSA guidelines in their face and tell them to show you where "late PHASE" doesn't include antibiotic treatment.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
You said.. No strains of Lyme disease are yet described to be resistant to antibiotics.
They can't have their cake and eat it too. The Bumsteere gang has ranted and raved that antibiotics CAN make germs resistant.. and even in the news today they are having to change the antibiotic for a sexually transmitted disease... just for THAT reason!!!
Find their (IDSA) garbage and toss it in their face and say you can't have your cake and eat it too.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
not indicated for multiple reasons:
..dangerous
Point out ALL drugs are dangerous but they don't limit chemo for cancer patients because of POSSIBLE side effects.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
..we don't even know why it was recommended
Point out again because it was effective.. and has been used for this purpose in the past with good results.. again.. use that diary.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
My PCP is positive and wants to do what she can. Her nurse is negative and says the new director of PHP denies, denies, denies.
Foo-eeee on the negative folks. "Can't" never did nothing.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cactus brought up an excellent point.
Salmonella!
Some of these other infections from ticks are complicating Lyme treatment.. and also need and are EXPECTED to have extended treatment!!!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Also.. toss a copy of ILADS in their face and tell them they are an accepted standard of care.. and are listed on the National Guidelines Clearing House.. and are approved by the....
"NGC is an initiative of the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. NGC was originally created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP])."
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Also prepare a document stating you will NOT be subjected to medical guidelines (IDSA) that are currently under investigation by the government for anti-trust violations, monopolization, and EXCLUSIONARY conduct which was used in their development process.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I am a pessimist.
Just because you say "It's okay," doesn't mean it will be, especially if you can't provide the supporting evidence you need.
Tincup had many good suggestions, but unless someone provides all these articles and references for Kam, she won't be able to get them all together.
Have you seen her "To Do" list? Folding and putting away the clean clothes is a challenge...how is she supposed to do online research?
Cognitive dysfunction is distressing and embarrassing, at least it is for me. Some weeks I have trouble paying the bills on time. Sigh.........
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Tincup..that was excellent. My daughter just signed up for the AZ state insurance system and may be running into the same problems KAM is. I'm going to print and save this arguement.
posted
Kam, Your fighting & tenacious spirit continues to be an inspiration.
Tincup, Great points! I saved them for my insurance battle.
Posts: 628 | From the south | Registered: Dec 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
This is good. Thank you. Right now, I am kind of frozen over all of this and wish I had not taken it this far.
But, Hopefully, they will accept the postponment for tomorrow and it will give me time to regroup and present documentation and education to the judge and insurance rep.
My focus now is on getting my old Jazzy that has not worked since Sept. I hope to get it tomorrow.
And a friend is coming from CA to bring me her old Nissan. She just purchased a new HOnda.
So, we will be going down the hill to get both the Jazzy and the Nissan tomorrow...I hope.
Big Day for me. HOpe my health is waxing and not waning. Or is it waning and not waxing?
And I thought my first test runs for driving were going to be back and forth to the dog park a mile away. HA!
It feels so strange having others provide these things for me. I don't know quite how to deal with it. I have just been crying and not sure why.
ONce doc dave sends the computer I can start printing things out.
A car, a computer. xango and my Jazzy fixed. Wow. Life should start to get a little easier now.
[ 15. April 2007, 10:12 AM: Message edited by: kam ]
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kelmo
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posted
It's cute, KAM, but I am not sure everyone understands the phrase "going down the hill". (Not that anyone cares, I'm sure, but I'm going to tell them )
In AZ, there are a couple of levels to the geography. The state is almost divided in half. KAM is "up the hill" from me in a lovely forest town, I'm "down the hill" in the desert. The Valley of the Sun.
My daughter and I will be going "up the hill" to visit my aunt, then "down the hill" before it gets dark.
See, KAM? I get it!
I will be following your story closely.
Posts: 2903 | From AZ | Registered: Feb 2006
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kam
Honored Contributor (10K+ posts)
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posted
Wondering how long it takes to go up and down the hill.
Will be going to both MEsa and PHoenix.
I know last time I checked, I went by map quest and it took much longer.
Map quest said it would take 2 hours for my parents to pick me up when I got grounded for health reasons (thought I was dying) with angel flight.
It took them over 8 hours to come get me while I lay on the floor in a hotel conference room.
But, I think that wasn't all of map quests problem.
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kelmo
Frequent Contributor (1K+ posts)
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posted
Eight hours.
I've made the trek to your town from the west side of Phx in a little over two hours. Mesa should be under two hours.
Keep us posted. I'm going to be fighting for Rozerem.
We haven't even seen a PCP yet to see about her Lyme meds. I think those are going to all be out of pocket, unless there is a miracle.
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
As for me actually having any thing constructive to say,,,,
"Even a blind sow finds an acorn every now and then!!!"
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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just don
Frequent Contributor (1K+ posts)
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posted
Kam, IF the hearing is scheduled for tommorrow,,,when will you know IF it gets postponed(I sure hope so)???
Also WHERE is the hearing proposed to be?? In your town or 'down the hill'???
Now I am going out on a limb and say something else that goes along with all posted HERE!!!
What IF somebody helped Kam with doing the research required?? Is anyone willing?? Hopefully sorta close to KAM,,,like Kelmo or somebody who can USE this research for THEIR appeals also(from that invaluable post of our beloved Tincup).
Then they could either snail mail if time permits,to Kam,,,or fax if hurry up mode is required. It would need to be done pronto,,,BUT what a gift for someone unable to do it for themselves.
Those that said they didnt have ANYTHING (and I do respect THAT statement) to contribute to her puter and chair fund,,,here's YOUR chance!! If there are more than one,share the load and each do one thing!! Will this work???
SURE,,if we MAKE it work!!! Its up to all of you,,,but most deserving and could be shared with ALL!!! All for one,,one for all!!
Calling all abled researchers today!!!remaining--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kelmo
Frequent Contributor (1K+ posts)
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posted
Don, I went to that FABULOUS National Guidelines Clearinghouse and found a great supporting document to Lyme treatment.
I went back to search and it booted me out. I can't access it any more. Maybe you could send it to Karen.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I will call tomorrow...both the adminstrative hearing and the PHP rep to see if it is postponned (sp?)
Most likely I will get an answering machine. But, hopefully they will get back to me.
I do need a plan b incase plan a doesn't work.
If they do go ahead with the telephone hearing, I will ask for a postponment at that time.
If they say no. It is not realistic for me at this time to come up with the info with the brain I have.
Not good for my health right now.
NOt good for me to even think about this right now.
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kam
Honored Contributor (10K+ posts)
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posted
IF I had a choice of which battles to pick with the insurance company..it would be the one for my lyme doc to be approved as an out of network doc.
I have an appointment with one of the networks infectios disease docs.
But, I will be pleasantly surprised if he is going to be of any help.
So, I will need to come up with documentation to help my case to get treatment.
don't know if this is making sense.
Need to get more brain rest.
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stymielymie
Frequent Contributor (1K+ posts)
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posted
don't worry there are many other combo drugs that may work better. you are probably resistant to ketek now and it is a nasty drug.
zitro,vfend and plaquenil is a good cocktail that works for alot of people. it cleared me up. everything except vfend is generic. vantin is also a good drug not mentioned here. it is the oral equivalent of rochephin and probably works just as we.
computer in box will send tomorrow.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
Ok.. BIG THING..
You need to remember this... EVERYONE!!!
When someone (usually insurance company) tells you to go to an Infectious Disease doctor of their choice...
The FIRST thing you do is call that office and when they answer.. you ask nicely if the treat "CHRONIC Lyme disease".
OBVIOUSLY they CAN'T treat CHRONIC Lyme disease.. because they don't believe it exists!!!
Then you call back to your insurance company and tell them that the doctor they want you to see doesn't treat patients with CHRONIC Lyme disease... and they must find you one who does.
End of story.
They CAN'T find one... because no such thing exists.
SO... Infectious Disease doctors are AUTOMATICALLY NOT able to give an opinion on your case because they don't treat CHRONIC Lyme disease... and they can't TREAT you because they don't treat what you have!!!
IF insurance company says.. or by some STUPID chance the doctor says they DO treat it..
Toss the new IDSA guidelines in their face and say..
Excuse me... NO YOU DON'T!!!
They can't have their cake and eat it too.
And they can't DENY you treatment because THEY say you don't have chronic Lyme disease... because these doctors have never seen it OR treated it before!!!
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by just don: What IF somebody helped Kam with doing the research required??
Thank you Don, that is what I was trying to say.
Online research can be daunting with cognitive dysfunction, physical fatigue, and the stress of an impending deadline.
I have problems doing this too.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have called the ID's office and I have written.
No response except a fax to my PCP for my records.
Any suggestions on what to do next?
Perhaps I could send something certified and then that would help with my case to get my LLMD as my out of network doc.
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stymielymie
Frequent Contributor (1K+ posts)
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posted
yes kam: please listen this time. you need a very very good lawyer that deals with chronic illness cases only. there may be one or two in california. they need to file papers with the court, they will file for a motion to get an immediate answer in this case. they will also file for "bad faith" agaisnt the insurance companies. THIS IS VERY IMPORTANT AND I TOLD YOU THIS BEFORE I WILL HELP YOU IF YOU WANT ME TO. YOU CAN'T DO THIS WITHOUT A LAWYER AT THIS POINT.
THEY CAN GET YOU MONEY FOR "BAD FAITH" THAT COULD RUN INTO THE $100.000'S OF DOLLARS. BAD FAITH IS WHEN THE INSURANCE COMPANY STALLS GIVING YOU AN ANSWER YES OR NO. THIS IS A TACTIC THESE USE TO HOLD YOUR MONEY AS LONG AS POSSIBLE.
I GOT $200,000 PLUS LAWYER FEES FOR MY CASE EXTRA HOWEVER, SINCE THE COMPANY WENT BANKRUOT , THE STATE WAS NOT RESPONSIBLE FOR THIS MONEY.
YOU HAVE TO GET ALL YOUR RECORDS TOGETHER. I CAN FIND YOU A LAWYER IF YOU'D LIKE.
DOCDAVE COMPUTER SHIPPED TODAY
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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kam
Honored Contributor (10K+ posts)
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posted
CAn not read other posts right now. But, wanted to let you know with the help of my friend from CA who does have a better working brain than I do.....
She made the phone calls and the hearing has been withdrawn...she will take me to a place to fax the necessary paper work.
The Ketek has been provided through other means other than insurance.
I have a standing order for blood work every two weeks.
So, things are looking good right now.
Also decided to not go to the hearing stage of getting my lyme doc as an out of network doc and trying to get the provigil via the hearing but through other channels.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
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posted
Doc Dave,
I just read your post. I need to see when my claim was filed.
And I need to find the name and contact information to the attorney I spoke to previously regarding the CALPERS case.
They specialize in CALPERS cases.
He did tell me he could not do anything until I received a denial letter from CALPERS...but I will contact him again.
Because he did ask me when I filed. IF i have that info, I can ask him about bad faith along with it.
I also know that it did take the other teacher 3 years before things were approved.
I did send an email the first week of this month and have not heard back.
I will also send another email.
I will be able to work on this this week. If one way doesn't work...with the brain i have.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
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posted
Received this email today!
Your case is currently in review; however, you will be notified in 2 weeks regarding the determination made on your case
This is in regards to work agreeing that my health going south was work related.
For those who do not know. Several of us came down sick at work around the same time with the same bizarre symptoms.
CFS/fibro/valley fever/stress were dx we all received.
I thought there had to be more and continued to search...ran across doc who knew about lyme symptoms and which lab to use.
Others did not go to a lyme doc or get tested for lyme.
They continue to be OK with CFS/fibro dx and were approved for disabiity through work.
I also have a telephone consultation with a CA workmen's comp attorney regarding whether or not he will take my workmen's comp case.
I have talked with attorney's previously and hired one...he did help in the respect he kept the case going until my brain cleared up enough to know he was not helping with doing his homework for getting my case approved.
Others said it was too late in the process and I would do better handling it myself.
The other teacher who just settled said she did not know if her attorney really made any difference or not. She was just glad it was settled.
She said he got a big percentage of the settlement...which did not make sense to me because I thought there was a lid on just how much they could receive.
My first attorney has a lien on my case of $2,000 if it is approved. That is the limit he can charge.
[ 16. April 2007, 04:16 PM: Message edited by: kam ]
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stymielymie
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Member # 10044
posted
if you need me to help at all let me know. i think you have a case for bad faith if it is over 4 years without any answer.
i'll help any way i can
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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