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    Old 03-14-2006, 07:04 PM   #1
    Poisoned muscles
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    Rocephin 5 times a week?

    I just started rocephin 5 times a week as apposed to 2 or 3. They put an IV line in my arm today, so its this is all new for me. Im also on Biaxin and plaquenil daily.

    Is anyone on this treatment? Does it work? Is this alot of meds?

    I actually have to cut and color hair tomorrow, Should i be super careful with the iv?

    I seriously push myself to keep working when I can. I probably take too many painkillers. I dont feel addicted but they just barely take the edge off so I can work and run my business 27 hours a week. ( used to be 55 hours)

    Also for anyone that reads this, has anyone ever had a positive rocky mountain spotted fever test? I did one time 7 months after symptoms along with an indeterminant lyme. after doxy for a week and sever herx, a new dock retested me and RMSF was negative. This infectious disease doc denied lyme and told me to go to the mayo clinic. 4 months later i found Dr Fein in NJ. I m being treated now for 8 months with lots of ups and downs, more downs.

    Im sure everyone has crazy stories, this is the first sight Ive joined and its helping. Thank you everyone

     
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    Old 03-15-2006, 05:21 AM   #2
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    Re: Rocephin 5 times a week?

    Hi Poisoned muscles:

    I hope things will start to get better with the Rocephin. Do you have co-infections? The Biaxin/Plaquenil combo sounds like something they would use for co-infections. I have not had an I.V. so I can't speak to that. I just wanted to say that it is a good thing that you found a LLMD. Do not go to Mayo clinic for lyme. They will tell you do not have lyme. Even if you had a tick in your arm and a rash they'd probably give two weeks of doxy and call it good.

    Hope you are feeling better soon...

    Frango

     
    Old 03-15-2006, 05:32 AM   #3
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    Re: Rocephin 5 times a week?

    Hi Poisoned muscles,

    I agree with Frango, do NOT go to the Mayo Clinic as they know nothing about Lyme.

    Dr. Fein comes highly recommended and I would follow her advice and treatment plans.

    Have you tried the Detox Baths to get rid of your pain? I'm sure you know that pain killers are really not good to take but I do understand that you have a business to run and that you must be in lots of pain.

    Is there anyone else that can take your place at work so you can rest? Pushing yourself is not good for Lyme, resting is.

    I also don't know much about IV's since I never used them.

    I hope you feel better,
    Denise

    Last edited by deejavu; 03-15-2006 at 05:32 AM.

     
    Old 03-15-2006, 06:18 AM   #4
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    Re: Rocephin 5 times a week?

    Poisoned Muscles

    Rocephin is a very harsh drug. I had to pulse it. Couldn't do 5 days in a row. I would do 2 skip1 then 2. IV MT & TF other days I didn't do rocephin but you still have to flush your line daily. Pain for a few days after having the Picc line placed is normal. I had to take tylenol or advil for the pain. Make sure you are taking a good probotic. & milk thistle helps clear the liver of toxins the rocephin kills.

    Prayers......Marsha

     
    Old 03-15-2006, 03:13 PM   #5
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    Re: Rocephin 5 times a week?

    Dear poisoned muscles,

    I did the rocephin 7 days a week for 9 weeks with no problem but was not on other meds at the time. I had to stop because my liver enzymes jumped from 40 - 743. Not good. Just on orals now.

    Make sure you take milk thistle to clean the liver. I wish I had known about this when I was on the IV. I usually filled my syringes with the saline or heparin and laid everything out exactly in the order it was to be used. Even the alcohol swabs. That way you don't forget anything.

    My doctor's nurse gave me numerous lengths of elastic open weaved sleeves and I would pull one over the line and put one below it and overlap them. I felt more secure with it staying in place when I did this. Ticker says there is a sleeve from Brown Medical (I think) for when you take showers that really helps. I am a bath person so never got one, just wrapped my arm with saran wrap and was careful.

    I hope you see improvement from the IV. I may end up back on it after the flagyl route if I don't see improvement. Keep us posted and glad you are getting some good advice here.

    Maureen

     
    Old 03-16-2006, 07:58 AM   #6
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    Re: Rocephin 5 times a week?

    I have been to Mayo, and they knew absolutely nothing, but ended up spending about $5,000 on all the tests that concluded that I actually did NOT have lupus, but they had no idea what was causing all the pain and fatigue and migraines. They did recommend a nice person to "talk" to. I wish I had a dollar for every time I had heard that over the years!

    I have been on IV rocephin 7 days a week for 9 months. During that time I have been on various orals along with it.
    The worst reaction has come from the levaquin. I had read that it could cause achilles tendon rupture, but I was unsuspecting of just how much additional pain it would cause.
    If anyone is on levaquin now and if you have noticed additional pain, you should probably talk to your doctor. I experienced pain in many additional joints and the pain was different. How absurd that I didn't make the connection until the doc asked how long the pain had been worse. When I told him 2.5 months, he then told me that it was probably the levaquin and to stop taking it right away. I guess the Levaquin can cause tendon pain in every point. I felt better in 3 days.

    I pray that we will all experience healing....
    TamKS

    Last edited by TamKS; 03-16-2006 at 08:02 AM.

     
    Old 03-18-2006, 02:15 PM   #7
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    Re: Rocephin 5 times a week?

    Dear TamKS,

    I have been trying to respond to some past posts that intrigued me and today is the day. I am amazed that you have been on rocephin for 9 months. To me this is not encouraging unless you can tell me you are seeing improvement. I also wonder how you get your insurance to pay for it. I may end up on the IV again if the flagyl doesn't make me see some improvement but Dr. Crist prefers claforam or primaxin to rocephin because of the liver issues. That's okay with me since my enzymes went fro 40 - 743 after 9 weeks on rocephin about 1 1/2 years ago. Of course I didn't know about milk thistle at the time. A lot of little things resolved for me on the rocephin but nothing major. When the IV was stopped they all came back except the heart palps but even those crop up here and there. I honestly don't know how you tolerate biaxin/plaquenil and the IV. I had no problems with the IV but the B/P wasn't great fun. I hope you can tell us that the rocephin is at least helping and you are feeling a little better. I can't imagine the cost either. Unfortunately when I was on it I got caught between two deductibles ($5,000 total) when the year changed and will be paying the doctor for another year. That's one reason I hope I won't need to do IV because I still owe him $2200. He was an ID doctor and I will use him again if IVs are needed since Dr. Crist is in Missouri and I am in Dallas and he doesn't pressure for the money. I think they are just happy if you pay consistantly.

    Maureen

     
    Old 03-18-2006, 05:57 PM   #8
    Poisoned muscles
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    Re: Rocephin 5 times a week?

    Maureen
    I just finished 5 days of rocephin and today i have extreme weakness in my legs. My cpk tends to go up even on antibiotics so ill have to get it checked. As far as how I handlle plaquenil and biaxin, i just do the best i can. my stomach is messed up only once and a while. The Iv pic was a little painful, i couldnt cut hair with it. I removed it today sat and tues they will put it back in. Now Ive been on rocephin for maybe 4 months but only 3 times a week. Do you think all these antibiotic can actually help people get rid of this disease. All these meds are freaking me out. I feel like this is my last chance. How do people stay on them so long?
    Jen

     
    Old 03-18-2006, 05:57 PM   #9
    Poisoned muscles
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    Re: Rocephin 5 times a week?

    Maureen
    I just finished 5 days of rocephin and today i have extreme weakness in my legs. My cpk tends to go up even on antibiotics so ill have to get it checked. As far as how I handlle plaquenil and biaxin, i just do the best i can. my stomach is messed up only once and a while. The Iv pic was a little painful, i couldnt cut hair with it. I removed it today sat and tues they will put it back in. Now Ive been on rocephin for maybe 4 months but only 3 times a week. Do you think all these antibiotic can actually help people get rid of this disease. All these meds are freaking me out. I feel like this is my last chance. How do people stay on them so long?
    Jen

     
    Old 03-18-2006, 06:04 PM   #10
    Poisoned muscles
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    Re: Rocephin 5 times a week?

    Maureen
    I just finished 5 days of rocephin and today i have extreme weakness in my legs. My cpk tends to go up even on antibiotics so ill have to get it checked. As far as how I handlle plaquenil and biaxin, i just do the best i can. my stomach is messed up only once and a while. The Iv pic was a little painful, i couldnt cut hair with it. I removed it today sat and tues they will put it back in. Now Ive been on rocephin for maybe 4 months but only 3 times a week. Do you think all these antibiotic can actually help people get rid of this disease. All these meds are freaking me out. I feel like this is my last chance. How do people stay on them so long?
    Jen

     
    Old 03-19-2006, 07:01 AM   #11
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    Re: Rocephin 5 times a week?

    I did rocephin and claforin through my picc line for 7-8 months...the problem I had with the rocephrin was it caused my gall bladder to get sludge in it...I had a pancreatic attack and gallbladder attack...the doc's wanted to yank out my gallbladder . ..but I did alternative med's and SAVED MY GALLBLADDER...I SHOWED THOSE DING DONG DOCTOR'S...HAHAHA..

     
    Old 03-19-2006, 07:01 AM   #12
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    Re: Rocephin 5 times a week?

    re-peat...whoops

    Last edited by J0J0; 03-19-2006 at 07:04 AM.

     
    Old 03-21-2006, 10:11 AM   #13
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    Re: Rocephin 5 times a week?

    Maureen,
    Sorry I haven't responded to your questions. I am coming out of a 2 day migraine! And, I don' t always get on the site.

    Yes, I have been doing the Rocephin through my PICC line for 9 months now. Since it seems that a lot of people on here have had trouble with various aspects of the PICC line/ rocephin, I am a little afraid I am going to jinx myself when I say that I haven't had any of those issues. (fingers crossed that I don't). From what I have researched about the rocephin, you have to be on it for a long time (sometimes more than a year). Also, the rocephin doesn't take care of the co-infections. I have tried zithromax, minocycline, tetracycline, & levaquin. I take a supplement called Immune Care 64 that my LLMD recommends. I am on Duragesic patch for pain (strength 100). I don't know how familiar you are with Duragesic, but it is basically morphine in a time-released patch. I'm also on ritalin (for energy-it really helps),cymbalta, fluconazole, and at night zanaflex and doxepin. I take vicadin for break through pain, and Axert for migraines.
    I also take lots of very hot baths and use my infared sauna for pain. Sometimes I just can't sit in the sauna because of the pain...just can't get comfortable.

    Am I better? Yes. I have to look long term though to see the improvement. Last year at this time I was on 150 Duragesic and using even more vicadin. There have been times when I thought I was getting much better, only to take a few steps backward. It is very frustrating as we all know. I believe that there is a pathway to healing for us all. It is just so frustrating to keep trying sometimes. The trial and error is sometimes very difficult. The levaquin for me was awful. I felt so terrible on that one. Next I will try biaxin or flagyl. My doc like to give each new med about 3 months before moving on.

    Oh, insurance pays 80%, and once we meet our deductable ($5000 family), everything is covered 100%. We met our catastrophic deductable in sept. of last year, and will meet it pretty soon. So, after that it is all covered. My meds(esp. the duragesic are very expensive.

    I have been through loads and loads of doctors like everyone else here on the boards, that the doc I see now always spends at least an hour with me, tells me all about his research, what he is thinking about trying, other cases like mine.... sometimes I am ready to go long before he is finished. The one thing I know is that he will keep trying to figure it out. He will always have another idea on what to try. It is nice having him in my corner. I have had docs tell me they have no idea what to do for me and not to scedule another appointment.

    I also see a chiroprocator that does adjustments and acupuncture. This has also been helpful!

    I hope I have answered some of your questions.
    Prayers of healing to all,
    Tami

    Last edited by TamKS; 03-21-2006 at 10:15 AM.

     
    Old 03-22-2006, 04:10 AM   #14
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    Re: Rocephin 5 times a week?

    Dear Tami,

    Thanks for the response. We have had a few people on here who after 6 months on rocephin were lyme free so I was surprised to see somebody on it for so long. I am glad you are better and hope it continues. I can handle the co-pay, it is the deductible that is killing me but will probably end up on the IV again. At least this time I have a doctor who is lyme literate and I know the importance of keeping the liver clean.

    Maureen

     
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