posted
I will be seeing an infectious disease doc that the director of the insurance company has requested I see.
They are not OK with my LLMD's recommendations for treatment because he is not with their insurance company.
The insurance company is saying they are concerned about long term use of IV rocephin and the other abx I am taking.
I am thankful for the medication they have provided, but I am going down hill without it.
It seems that whether or not I continue treatment is up to the infectious disease doctor I will be seeing.
It is just a thought, but I thought it might help to have a print out of others who have been on IV rocephin and long term abx and whether or not they felt it helped and what the negative consequences were to ones health due to long term abx.
Thanks Katherine in AZ
Posts: 89 | From AZ | Registered: Mar 2006
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I have been on IV rocephin for 10 months. I felt he has helped.
I went from being housebound for the most part and unable to read to
Being able to get out and about in the power chair an hour or two a day on average and being able to read.
On the negative side, my white blood count was low the last two weeks before I had to have the PIC line taken out due to possible infection.
It has been suggested that I use a PORT next time.
I also would like to add that I had a low white blood count before being dx and starting treatment. But, upon retesting I was fine.
Posts: 89 | From AZ | Registered: Mar 2006
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posted
Five years ago when I did iv's the infectous disease doc insist that one month was all i needed. So i had the line pulled and in one month i had symptoms back plus a new one - drop foot.
I was hospitalized with a new line put in, and another month of rocephin. The infectious doc wanted the line pulled and this time i refused. He was very angry, sent me a letter that i was not his responibility anymore.
I then found a llmd who helped me with my line and i did two more months of iv.
I would not have the line pulled until you are absolutely sure you are better.
That's the best advice i can give you.
Posts: 175 | From Pa | Registered: Aug 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It took 4 1/2 MONTHS of IV antibiotics for me to feel like I was in the land of the living again. I had the line in for 6 1/2 months and it was pulled because of a fungal infection in the line.
It is between you and your doctor what your treatment is. Your insurance company has NO right to determine your couse of treatment, either drug wise of length of time wise.
Please do a search here on lymenet for Insurance Appeals. My letter will come up and it explains this in detail.
Also get ahold of the Lyme Times Insurance Issue. It will help you a great deal.
I live in AZ too...and I recognize you from our state support group!
I'd talk to your ID doc myself, but I doubt he would listen. Write to your insurance company, using a letter similar to mine. It worked for me (thank God). I hope it will work for you.
Do NOT fall for the trap of letting them (the insurance company) determine your care.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Hi Timaca,
I am on my way out the door to see LLMD in Ca, but I did do a search for insurance appeals.
I have opened several of the posts and say your post on each one about doing a search for insurance appeals to find your letter.
Just wondering if you might have the url.
I hope I can find it when I get back. I hope I can find this post when I get back. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
The title is "Appeal Letter to Insurance Company" and it was posted in Nov. 2005 in "General Support." Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
We had planned that I be on Claforan for approx 4-6 months. I made it to five weeks and then had some kind of severe allergic reaction. We waited two weeks and started Rocephin. I had an immediate allergic reaction to it. From what I understand IV antibiotics are used normally only after orals are first tried and its usually long term. I've since moved on to three times week bicillin shots. For me this seems to be working. the Claforan IV medicine seemed to be working until I had the out of the blue allergic reaction. Good luck. Lots of people seem to do very well on the IV antibiotics.
Posts: 547 | From Maryland | Registered: Mar 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Happy Camper, I was on IV Clafran also for about 5 weeks and had an allergic reation just like the previous poster. Hives, big hives ALL over.Itchy, rasied, and RED all over and spreading. I was cut off then from the IV's by insurance because my manageded care guy(I call it the hachet person) said I had to be cured now, no further IV,s ever necessary or paid for!! In a word, NOT LONG ENOUGH!!! It was just starting to make a difference and they cut me off, CURED, Period.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Don,
I always wondered what happened with your IV. Now I know.
Timaca,
I did read your letter. There is some very helpful information in it.
The insurance is cutting me off because I am not seeing a doctor that is with them. Since I have the state's insurance, I need to go at this a different way. I need to get approval to see my LLMD some how or find a doctor who is on their insurance plan that is lyme literate.
Or since it is open enrollment, I can try the other choice for the state's insurance along with another primary doc since the one I have is not on the other plan.
Mostly, I am frustrated because my problem solving skills are not there yet. But, I do know that with time all will work out. I just can't demand my brain to work when I want it but need to wait until that window of opportunity.
Then things look simple to me and I wonder why I hadn't thought of them before. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
If the insurance co has said it does not want to pay for more IV and has selected this ID doc for you to see, there's almost no chance that anything you say will influence the outcome. Their minds are already made up.
This is why appeals are necessary, including thru the state ins commissioner if the internal appeals do not succeed. You have to follow the designated process, including time table, though.
Many people give up and pay out of pocket. Generic rocephin is now available and much cheaper (but still not cheap when supplies, etc are included).
Posts: 8430 | From Not available | Registered: Oct 2000
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It appears they are cutting off all treatment until I see the I.D.
I will know if this is the case when I see my primary doc next week.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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