merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I was told today by the infusion company that my doctor want to continue my IV Rocephin for at least 3 more doses. I am so glad. I know it is only 3 more but I am greatful for it.
It would seem so pointless to someone who is not ill. Here I am totally excited for 3 syringe fulls of medicine...Who would have thought that a few months ago..... Melissa Posts: 3905 | From USA | Registered: May 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Melissa, Who is cutting you off and NOT letting it go till treated past last sxs,,,the doc,the inurance,or___. I forget how long you have been on IV,,,but I sure would campaign for more!!
Unless he is able to change to different med and continue that way for a different mode of action!!
Are you taking anything WITH the rocephin?? I think if I memeber right you havent had this too long,,,they NEED to treat long enough hard enough to get rid of it this FIRST time around. Thats 60 days past last sxs according to Dr. B's guidelines!!
Even IF you have to go into hock aways to get it done!!(on your own). Better to get it all this time than have to go round after round!!
Hope it all works well for you!!! lately--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well it is that I see and ID doc. He has been decent but I feel that he is more of an IDSA doc. He does recognize that I need more opinions.
He is sending me into a hospital in Boston Tuesday to see their ID docs. I am sure they are IDSA as well. I really dont know what else they can do. I have had every test known to man.
I still have a fever going on 9 weeks now. He is calling it FUO.
He thinks I should be a lot better now. He is highly respected doc of ID but not a Lyme expert.
So he said I could have drug fever, cancer, or infection (ya think?)
I think I have babs but test negative. I have a LLMD appointment in 2 and a half weeks. I have been in contact with the real LLMD and he said not to worry. My insurance will only give me 28 days of antibiotics, and it will still be costing $17 a day for IV meds and supplies, and $11 a day for the nurse to change my dressing every 3 days.
So it will end up costing around $500. I know this is not too bad, but I havent worked in 9 weeks and I think I have $100 to my name. I have no credit cards and nothing to sell. I have 2 small kids so unless it is covered I cant do it.
The only thing I can do is change my own dressing. I am a vet tech and I put central lines in dogs and cats all the time in a sterile manner, so I think It would be ok.
Can a doctor call an insurance company and ask for an extentsion? Thanks Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Melissa- Your ID doc sounds soooo much like the one I seen the first time around. I feel sooo bad for you, because I totally can relate to you and what you are going through.
My first ID doc said the SAME THING to me. I also had a fever the entire time he treated me. HE also said "I SHOULD be feeling better". But,, I was not. and even though I was not, he didnt know what else to do besides the standard 30 days of iv rocephin.
The difference between you and I is that you found this board now rather than later.
The 1st time around I trusted my ID doc and thought that I was "healed" and went on with life thinking so.
Then I relapsed a year later..you know the drill.
Pretty ironic that my ID doc here is also highly respected here in mpls but yet he too does not know what to do with me.
I recently was hospitalized, 3rd relapse and had to have him as my dr. He actually said "it cant be lyme disease, you have had enough abx to have gotten rid of that"
Then he did every test he could think of, all normal results, except lyme.
He couldnt believe it and actually told me he did not know what to do with me!!!
Thank GOD I have an llmd that does
This time I will not stop ABX until all symptoms are clear for at least 2-3 months.
I wish you the best and hope that your insurance will cover your cost. I know it is very costly.
God Bless
Sandra
Posts: 73 | From phoenix, az | Registered: May 2005
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