I had been on Rocephin for about 2 months and I didn't think I was getting better.The insurance company cut me off (they said CDC guidelines). Now that I am off I feel like I am worse than ever. I truly feel like I am on my death bed. Can someone tell me why this is happening? Are all of the spirochetes having a party because the medication is gone??
Help!!
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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posted
Yes to both. My LLMD said she is appealing the decision to take me off of the IV antibiotics but it usually doesn't work. The orals really aren't working. I am so sick and tired.
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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My guess would be that without the antibiotics around, your immune system is reving up for battle after being "off duty". The inflammation inside your body is making you feel deathy ill.
The ketes are very slow to get back to the party but it is their goal.
My llmd told me that after a month on abx, about 50% of people will be able to get a remission w/out abx but it may take a very long time.
You need to be aggressive here--FIND AN LLMD who will at least get you on an oral regimine to keep the therapy going...
If you are desperately ill, go the the emergency room. You can at least get some pain killers and they will monitor your vitals. don't know what they would do about abx, though--you can try to squeeze a course of doxy out of them.
A true LLMD will help you take on your insurance co. to extend the treatment, you may have to write and call them demanding care. Many on this board have gotten extensions to coverage by being NOISY.
Hang in there-you are at THE most difficult juncture but you have the strength to push through this...on hour at a time.
We are all here to support you.
-------------------- We are spiritual beings on a human journey...
posted
Hope, I pray that you will get what you need.
Yes, be the SQUEAKY WHEEL GETTNG GREASE JOBS! If you don't stand up for yourself, no one else will.
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
IM bicillin may be more helpful than orals.
Do a search on this site for insurance appeals. There's a letter there that may be of help to you.
Good luck....God speed...Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi hopeandme
Sorry to hear you had to stop the IV.
Many here have had that happen. And have gone on to improve on orals.
It took me 2 years on orals to notice any improvments.
It's a long battle. Take time unforunately and some amount of trials.
Seeing results after a few months would be the exception and not the rule.
Maybe you could go to Dr. B's guidelines and print out a few to show your LLMD?
Or go to Scott's post on notes he took at the hope to heal conference. He lists the alot of abx combinations that the top LLMD's have recomended.
In both sites are listed many ,many oral combinations to try.
Hang in there and my prayers are with you.
You can beat this thing.
never lose hope hopeandme
where there is life...there is hope
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Would you qualify for the free rocephin from Roche??? Would think that would be your best bet since you started on it!! Why wouldnt your "LLMD" think of this???
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Just don - I think Roche stopped the free rocephin.
But maybe I am wrong.
It took me 7 weeks on rocephin before I had any improvement...
When I was taken off I was placed on a low dose of amox and I got much much sicker.
While you are fighting the insurance co. there are many combos of oral antibotics that could be tried.
Like someone else suggested there is also bicillin injections.
posted
Hi Hope, Same thing happened to me. My LLMD really fought for me, but to no avail. I got free rocephin from Roche and had to order all the supplies seperately.
I was on IV Rocephin for 6 mos. They were very generous with needy med program. Hope they are still doing it. The other thing I did till I got approved was IM Rocephin.
My doctor ordered numbing agent for IM injection. The insurance co paid for the IM. Go figure. Where there is a will there is a way.
Wishing You Great Luck Gael
Posts: 121 | From philadelphia | Registered: Feb 2006
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You asked why this is happening.....at the Hope to Heal Lyme conference the docs said that if you go on abx for too short a period it just kills the weak ketes and the strong ones are left (to party)....
Maybe because the orals you are on aren't as strong? As 5Dana8 said....it took her 2 yrs. on orals to notice a difference.
Hang in there. : )
Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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