posted
1) How long did you have lyme before starting IV antibiotic treatment? 9 years but really sick for 1.5 years before starting IV
2) What antibiotic was used? Rocephin 2 grams once a day
3) What other oral medications were used in conjunction with the IV antibiotic? Biaxin 500mg BID x 1 month and tinidazole 750mg BID x 1 month
4) How long were you on IV antibiotics? 9 weeks total
5) Do you feel it was worthwhile? Yes, very much so. It pulled me up enough to let the orals I have taken since then work much better.
Posts: 98 | From MA | Registered: Dec 2005
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posted
Thanks for answering. I hope others will do so as well. Sometimes I read comments about how people think that IV antibiotic treatment is not advisable and I'd like to understand why.
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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posted
1) How long did you have lyme before starting IV antibiotic treatment? July 05- was on orals for 6 months - got sick again Feb 06- started on IV end of Feb.
2) What antibiotic was used? Rocephin 2 grams once a day- for 2 weeks then had to switch to Zinacef- 3g 2x day-- liver enzymes elevated a couple times on both antibiotics so had to stop twice so far ( 2 week break with Rocephin and 2 week break with Zinacef)
3) What other oral medications were used in conjunction with the IV antibiotic? Biaxin 500mg 2x day, doxycline - 200 mg 2x day and Tindamax- 500 mg 2x day
4) How long were you on IV antibiotics? Still on since end of Feb
5) Do you feel it was worthwhile? Don't know yet,sometimes I wondered if they were helping at all, but just recently (last 3 days) have finally been starting to feel better. Hope this helps-Good luck!
Posts: 37 | From NJ | Registered: Feb 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
1. 17 years...dx MSin 1988, first MS symptom Bell's palsy
2.Rocephen
3. antigal, lovenox(I have factor V liedem)
4. on 5 weeks till got gallstones
5. I have/had more improvement on orals.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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liz28
Unregistered
posted
Hi, I was on IV twice, for six weeks and seven months. Basically, you have to take Actigall with it to keep from losing your gall bladder, it's terrific in some Lyme cases, and useless if you also have co-infections.
The old Dr. B protocol was to combine an antibiotic from the cephalosporin family, of which rocephin is a member, with a macrolide and a pulsed cyst buster.
Since the cyst busters are viciously harsh on the body, you would not take them at the same time as rocephin, which will be causing enough trouble.
The best macrolide is ketek, especially when taken at half the normally prescribed dosage of 800mg/day (which is too strong for most people), but with rocephin, you might be able to get away with zithromax as your macrolide.
I hope to use IV in the future, when my co-infection treatment is completed.
All these antibiotics need to be taken with the best probiotics you are willing to spend money on (this is one of the few areas where I feel it's acceptable to spend $25 on a bunch of stupid vitamin store pills), an anti-yeast prescription drug such as nystatin or diflucan, and liver support. One milk thistle a day does not count as liver support. Take at least two or three different supplements. I splurge on a very expensive but excellent supplement called Dr. Zhang's Hepa Formula 2, and also take N-acetyl cysteine (marketed as NAC), phosphatidylcholine, and Q-Absorb CoQ10. There's another supplement called alpha lipoic acid you might want to check out that has a good rep, and then there's milk thistle, which is considered the all-round best but still needs some backup when dealing with these heavy antibiotics.
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posted
Thanks especially for the suggestions for the supplemental stuff. What would be a good name of a probiotic? Can you get it in the health food store and how much should he take?
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I had lyme about a year and a half before starting IV antibiotics. I was quite ill...couldn't stand in lines, had to sit down; brain very foggy, typing difficult, speak starting to get mixed up, etc.
Rocephin 2gms 3 days on, 1 day off; then switched to daily when I changed LLMDs.
I was on IVs for 6 1/2 months. Line was pulled due to a fungal infection. If you get a picc line, make sure you get a monthly blood culture drawn from the line itself to check for subclinical infections.
Ketek (800 mg daily) was used for most of the 6 1/2 months, then 300 mg doxy for about a month or two.
It took me 4 1/2 months before I felt like I was in the land of the living.
I relapsed a good deal (but not totally) after the IV was stopped, for I had to stop all medications due to the fungal infection, and then C. difficile.
I am now on IM bicillin.
I do feel it was worthwhile.
Some good probiotics are: Primadolphilus, PB8; Theralac, FloraQ and Culturelle.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thanks again. I remember reading someone else who suggested the testing for infection in the PICC line. I'll be sure to mention it to the doctor.
My husband will have the PICC line put in at the doctor's office and we will infuse at home. But he'll be going to the doctors once a week for change of dressing (and I don't know what else).
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
have weekly labs to check liver function and general body function, get a monthly ultrasound of the gall blader, do the monthly blood culture as stated above, use actigall if on rocephin.
Good luck!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Hi Dancer: Very important to keep the picc line dry- that means protective covering for the line for baths, showers. I was a nurse before all of this started I found saran wrap kling worked great with hand held shower. There are sleeves on market and other coverings. Moisture wics bacteria around site so that is why it is important to keep dry- just like you would remove a soiled dressing or bandaid.
Six months rocephin for me first year, but a lot of coinfections and problems. Liver function very fragile with me to my med levels. Had lyme a little over year before dx and tx. Results variable like so many txs. some people do wonderful with iv- hope hubby is one. I am still trying to nail down my combo. Stay strong!
Posts: 719 | From Delaware | Registered: Jan 2006
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