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!! Posted by hopeandme (Member # 8803) on :
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.
Posted by humanbeing (Member # 8572) on :
Hope, So sorry you are in this place.
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. Posted by humanbeing (Member # 8572) on :
Sorry, we posted at the same time and I didn't see your reply.
You have only been in treatment for two months...It took me three (on orals) to get rid of the feeling I was dying.
Some people take many months or a year or more to feel any better.
Stay calm and strong, Best
Posted by bettyg (Member # 6147) on :
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.
Posted by timaca (Member # 6911) on :
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
Posted by 5dana8 (Member # 7935) on :
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 Posted by just don (Member # 1129) on :
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???
Posted by AZURE WISH (Member # 804) on :
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.
Hope you find something that helps.
Best wishes Posted by Lymetoo (Member # 743) on :
Hope, I'm so sorry this happened to you! I know it's tough. Hang in there and don't give up!
I think the bicillin would be a good idea, and possibly a cyst buster like flagyl.
As others have said, keep after them! Posted by hopeandme (Member # 8803) on :
Thanks to all of you! It is amazing to see that there are so many great people out there!
Much Love, Hope Posted by gael1111 (Member # 8816) on :
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
Posted by lymesly (Member # 8528) on :
Hi Hopeandme,
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.
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