Well, my LLMD called back. I originally called him to discuss adding a cyst buster to my rocephin treatment, and to tell him about the Gallstones and hopefully get on something to prevent more from forming.
Well, He took me off of the rocephin and I will be getting no more. which means the new shipment I got yesterday is supposed to go to waste. He ALSO told me that gallstones with rocephin are common. ( Of course this wasn't mentioned to me by him until now, I found this out from all of you -thank you)
He said that he would put me on another but, it would 'raise a red flag' with my insurance if I switched. and if I wanted to continue I.V I could come there twice a week?
I don't get it. I figured this would be a failure, I never thought I would be taken off now. I have no one to take me there twice a week besides my husband, and he has taken off from work too much already. I don't understand what the difference would be? Does he think I can pay for that treatment out of pocket? If he KNEW that this was common ( gallstones) then why wouldn't he of tried to prevent it... or even choose a different abx all together from the beginning?
I'm tired of trusting doctors, and I know alot of you here have been down this road over and over, so I am pleading for your wisdom here.
Earlier today, I felt confident that I still had a shot with this tx and now, I'm lost again.
I say to hell with it all, I'm not going to just say well, my insurance WILL reject it. I mean.. It gave me gallstones! Ofcourse I should be put on something else, right? I have to at least see what they say, and he doesn't seem willing to do that.
I'm very afraid that I'll end up with nothing but some major problems in the next few weeks when they wake up and realize it's party time again.
any suggestions?
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Ceftin is an oral version similar to rocephin, but does not cause gallstones. I would push for flagyl or some other cyst buster.
I had a picc line and did zithromax and flagyl. That combo seemed to help. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8981 | From Illinois | Registered: Aug 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
i am so sorry you are going thru tough times.If you have chronic lyme it maybe a long road ahead.I have had lyme for 19 years so I would consider my situation to be a really long distance racer as apposed to a sprint.I don,t know how early or how severe your case is but i can only tell you from my own experiences there are alot of other effective abx's out there other than rochepan. Hang in there don't ever give up and you will be all right.I just read an issue in the lyme times had a big section devoted to fighting insurace and geting calims met.The web site is www.lymetimes.org
Yes, I was on ceftin and doxy prior to the rocephin. I'm thinking that if the insurance will reject it like he says they will, I can probably kiss the idea of the cyst buster I wanted goodbye.
I'm still going to bring it up again when I tell him my decision. Thanks!
5dana8 I can't begin to imagime what you've been put through in that time! Primaxin is the next abx he is suggesting, we didn't speak about dosage yet, I'm still wondering how I'm going to get there if that's what I have to do. thank you for the support, and I do feel like giving in which is horrible considering how great I was feeling this morning. I'll be back on the horse, again. I have to. Thank you for the link, I'll check it out so I can be prepared when the next ball drops.
Sweet pea, Yes actigall, that's it. If I can flush them out myself, and be put on the actigall now to prevent new ones from forming that would be great. I think I've really improved and I'd hate to stop now being that I'm still so far from being symptom free.
Thanks everyone.
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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He wants me to come to his office for the primaxin.. which I've read some posts here and it doesn't sound like a bad idea. It's just that he wants me there twice a week to get it ( I still don't know if it's to pick it up, or get dosed).
But then he told me I'd have to take it twice a day , and mix it myself?
I understand what you mean know about the red flag on his end. I have to say that if he would have put me on the actigall, or another abx all together from the beginning, there's a chance this wouldn't be happening right now.
If there is a Lyme fairy out there somewhere.... PLEASE call a do-over!
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
good to hear a positive note in your post.I think very imprtant to eat lot before infusion other it made me vomit often.Also probenecid is hard on the tummy.How long are you on iv ?Flagal sounds like a good idea.but they did,t want to give to me so soon into the iv treatment because my high germ load the herx would have been to much for me Good luck
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
p.s. I don't know why do you have to go to dr.'s office to infuse?usully this is done at home and then you get seen every week or two to check pic line and blood work.How far is it ? can you take a cab? take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I had to travel quite a distance five days a week for IV. In my case, I had to go to the office because it's a Medicare requirement. What a pain. It was a long infusion (doxy, four hours per time), so I could just "hook up" and then go home, but that was almost more frustrating--driving all the way there and then leaving right away.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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I'm not quite sure why I'd have to go there twice a week? The ride is about an hour (w/out traffic) so I wouldn't be able to afford a cab, not even for one day. Plus I have a three yr. old and no one to help out during the day, and then there's my daughter who's in school so I have to be here when she gets home.
I guess I won't be able to do the home care thing for the insurance reasons I said above.
Well, it's been less than twelve hrs since I spoke to him. I'm sure one way or the other it will work out. eventually.
steph, Wow, five days a week. I'm stressing about two! thank you for the reality check, that had to be really frustrating.
Pab,
Yes, that's how I was recieving my treatment. every wed I got my supplies and meds. My nurse comes on wed too, and changes my dressing and takes my bloodwork and my vitals. real nice lady. I even had my midline put in at home when I first started tx. very convieniant.(sp?)
It would be great if it could stay like that, but I have to take what I can get, right?
I'm so sorry that your kids are going through all of this. It sounds like they're whole day revolves around tx. How do they handle it? are they doing well on it?
-------------------- -Kimmi Just keep swimming! Posts: 251 | From East Greenville pa, usa | Registered: Jun 2005
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Primaxin is easily infused at home....and it must be given 3 times a day to be effective.
I don't get this LLMD.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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