posted
Hi, I was hoping someone could please give me what they experienced while taking IV antibiotics. I had heard that this is the treatment choice when trying to help with neuro lyme conditions, I have had this for a long time (15yrs that I know of). Any help and information would be greatly appreciated. Thanks!
Posts: 90 | From NC USA | Registered: May 2002
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I've done very well on orals for a long time. A 25 week course of IV Rocephin was beneficial but didn't make me completely well.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on IV rocephin for 6 1/2 months. Also ketek for a good part of that time, then 300 mg doxy.
It took 4 1/2 months of the IV for me to feel like I was back in the land of the living again.
I felt pretty darn good (not well, but good) when the picc was pulled due to a fungal infection in it.
I was off antibiotics for awhile due to C. diff. I relapsed a great deal.
While on IV rocephin, make sure you have a monthly blood culture drawn from the picc line to catch subclinical infections in the line. Also ask your doctor about taking Actigall and getting a monthly ultrasound of your gallbladder.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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AZURE WISH
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Member # 804
posted
throughout my entire history of treatment (including pre llmd) these are my IV expereinces
Rocephin - 1st time helped alot in 3 months... but after I was put on amoxy and I relapsed and ended up worse than I was before I went on the rocephin.
Rocephin - 2nd time... helped some but developed gullstones and had gullbladder problems... gullbladder removed.
Zinthromax - Helped quite a bit but I eventually plateaued.
Clafarin (sp?) - allerigic had to discontinue use.
Had piccs (changed picc line after so long) for over a year .
posted
thank you for the iv antibiotics info. Ijust kind of want to know what i may expect from this once I start it. Seems like there are so many things to try to see if it ends up working for you. Again no silver bullet to kill this thing but can't give up.
Posts: 90 | From NC USA | Registered: May 2002
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Don't give up. I've been on IV's since February and they're pulling out the picc-line June 1.
I was on a pretty intense course of meds.
My last 4 weeks are going to be the toughest. Have been on my last meds for 2 days and it's difficult.
But I'm looking forward to getting this over with.
Hang in there.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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posted
Thanks for the words of incouragement aklnwh. I am so happy for you that you are almost done with your iv. From the sound of your email seems like you where on it for 5 months, do you mind me asking what iv antibiotics that you are on?
Posts: 90 | From NC USA | Registered: May 2002
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posted
I have the same question about IV versus oral antibiotics. It is so confusing. It seems as though IV is better if person with lyme can afford it (it is not covered by insurance as often and is expensive). I too have had lyme for at least fifteen years and will be starting my first meds. I have some nervous system and other symptoms. I posted a question about it a few days ago entitled "Confused with Lyme" and got a few responses.
What is Actigall and why check the gallbladder?
Posts: 35 | From baltimore, md & nj | Registered: Apr 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there,
I sure don't remember exactly but I was on Rocephin first with something else.
Then I think Zithromax and Clindamyacin for about 2 months with Mepron and Artemesia for Babs.
And now I'm on Levaquin and Zithromax only 3 times a week and it's kicking my butt big time.
Oh, also I take Tindamax (Flagyl alternative) 3 days a month orally.
Throw in some vitamins, herbals and other supplements recommended by my LLNP and that's what I did.
Also anything they told me to do, I did religiously. No sugar, didn't go low carb because I'm a vegetarian but eat dairy, fish and eggs.
Also I did hot bath treatments before the IV's. I had this done at a health retreat under nursing supervision.
Am also looking into another alternative treatment that I'm going to take as a precautionary measure after the picc-line comes out.
Hope this helped.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
quote:Originally posted by aklnwlf: Hi there lrtbc,
I sure don't remember exactly but I was on Rocephin first with something else.
Then I think Zithromax and Clindamyacin for about 2 months with Mepron and Artemesia for Babs.
And now I'm on Levaquin and Zithromax only 3 times a week and it's kicking my butt big time.
Oh, also I take Tindamax (Flagyl alternative) 3 days a month orally.
Throw in some vitamins, herbals and other supplements recommended by my LLNP and that's what I did.
Also anything they told me to do, I did religiously. No sugar, didn't go low carb because I'm a vegetarian but eat dairy, fish and eggs.
Also I did hot bath treatments before the IV's. I had this done at a health retreat under nursing supervision.
Am also looking into another alternative treatment that I'm going to take as a precautionary measure after the picc-line comes out.
Keh, I took Actigall while on Rocephin only as a preventative measure to keep my gallbladder from getting 'sludgey'. Worked great!
Hope this helped.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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