posted
I just wanted to ask if having a line in you all the time is a real pain and does it keep you from doing certain things.
I keep hearing so much nagative about getting infections, losing gall bladders, having to redo the line several times, costs, ect. Is it worth it???
So far I have been on oral ABX for 1 year with not much help at all! I have tried rife but it is too confusing and unpredictable.
I am thinking about herbs and heat therapy along with oral ABX. I am also detoxing with glutathione and oil/lemon drinks. Followed by a really healthy diet. WWYD?
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I meet with a surgeon tomorrow to talk about taking my gall bladder out. Is it worth it, absolutely. For one year I was sick and thought I was dying. I spent one year and $80,000 in insurance monies in a city with tons of great Dr.'s and specialist.
Not one could tell me what was wrong with me. I was sick all right, but from what?
When I finally got diagnosed and started treatment I could feel the relief and slow return to the land of the living within days of antibiotics. I am not someone who thought lightly of taking an advil, nevermind ANTIBIOTICS!
After one year of orals and bicillin shots I'm doing what I was told up front I needed, Rocephin IV. I have neurolyme with myoclonus type seizures.
My body had twitches body wide. I had hoped to avoid IV as I was terrified thinkinkg I'd die of a blood clot.
Since starting the IV, I no longer suffer from the seizures or the body wide twitches. I just completed six full months of Rocephin IV and expect to do another six full months.
I knew at the start I could possibly lose my gall bladder. It's a small price to pay to feel better. My GI Dr. believes that the lyme needs to be treated and he does not want me to stop to save my gall bladder. Yep my GI Dr. believes lyme is out there!
I have a groshong catheter. The only thing I can't do that I did before is swim four days a week. Instead I bought an elliptical for my house and I use it five/six days a week.
The groshong is held in place nicely for women because it sits insides our bras. I have a male friend who had one who chose to switch out after four months for a port which is a bit more durable.
I've never had an infection, or problem with flushing. In fact only when I shower and infuse daily am I even aware of it.
I hope I helped answer some of your questions. It's definitely working for me.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
It was way worth it for me but that's me. I lost my gallbladder but I have my life back*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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ByronSBell 2007
Unregistered
posted
I dont want to lose my gallbladder since it is vital to the immune system and digestion.
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Then Byron, don't go on IV Rocephin.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Well, I was on IV Rocephin for 5 months. During that time, my doctor had me on Actigal and he monitored my blood work every week.
My gall bladder is fine, I still have it. The only problems I had with the PICC line, was that I tried to use that arm too much (push ups) and it caused some inability to draw blood through the PICC. I was still able to infuse. Had to use Cathflow a couple of times, but with less activity in that arm, all was well the rest of the time.
I didn't enjoy doing the treatment, but it was definitely worth it and IV Rocephin does NOT mean you will loose your gallbladder!
Just make sure you are doing things to help your body detox - epsom salt baths, lower fat diet, lemon and olive oil drink, juicing, milk thistle, etc.
You will do fine. If your gut tells you that IV is the way to go, then it is better to go for it, than to put it off. Carrying around that thought without acting on it will wear you down even...
Take care, Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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posted
I've done several different IV drugs. If you do IV, the most important thing is to keep the site clean, whether you have a picc or a port. The next most important thing is to be as sterile as possible and to follow exact instructions. Don't lax off on not flushing your line with heparin, because if you do you can have problems. I also would recommend that you see if you can cath flow with activase once a month even if it doesn't need it. The reason for this is it flushes out your port/line of gook and keeps risk of infection lower.
If you are worried about your gallbladder, relax. First of all, you can take actagall. Second, you can take claforan or another drug what has equivalent efficacy. The thing is, with claforan you're going to be on a 24 hour infusion or at least more infusions than you would for rocephin. However it is just as effective. You might even find that a drug like zithromax works best for you. If you've been sick for a while, it is extremely likey that you have a mixed infection and also that the first round of rocephin is not going to get the job done.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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