Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I am considering doing IV Rocephin, but I am not convinced completely yet.
I am afraid that it would do more damage than good. Most patients on IV Rocephin often had relapse once stopped.
My guess is that while Rocephin did kill a lot of Bbs, but also severely damaged the immune system, so once stopped IV Rocephin, Bbs would come out of cysts, and the damaged immune system could not keep them at bay, that's why relaps happened.
So I would like to hear from you that had experience on IV Rocephin about the Pros and Cons of IV Rocephin to make a decision.
Any input will be greatly appreciated.
Thank you very much in advance.
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
If I could get insurance to pay more than 28 days I would be back on IV. But Claraforan, not rocephin b/c I have gallstones that I am already trying to disove with actigall.
I LOVED IV rocephin even though it landed me in the hospital for 5 days in 2001. It was the most intense herx including full body rash. Liver enzymes thru the roof, headache that nothing would touch.
Rocephin gave me my life back. I followed 2 months of it with 6 months of orals and felt pretty darn good.
I relapsed 4 years later. Not right away. There are MANY possible reasons why. Maybe coz we didnt treat the co's? maybe coz I was exercising too much? maybe I was headed for just a slight relapse but then had a steroid shot!
I think it is possible that IV can do more harm than good, but each person is different.
IMO---if you can get it and your body can handle it---do it.
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
posted
I did well on 4 weeks of Rocephin..then insurance wouldn't cover it, I was out of work and had to have the IV yanked.
Thankfully, I had 2 great weeks afterwards, when I started a new job. But the 4 weeks wasn't enough.
I am about to find a way to get back on it. It did help me..........wish I had stayed on it longer. I got my life back and then it was taken away. Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
The biggest problem is not staying on it long enough IMHO. We would not expect any other ABX to get us back to functioning in one to three months.....so why would we expect that of Rocephin?
My long term Rocephin experience has given me my life back.
Good luck....
Healing smiles.....lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
posted
Hi, I would say go for Rocephin if you have the choice. It basically saved my life. I was on it for 8 1/2 wks and felt about 90% of normal right before I stopped it. In retrospect I should have stayed on it for 6-8 more wks.
If you follow Dr B's guide I think now the new best way to take it is 4 gms /day (instead of 2gms/day) and pulsed at 4 days/wk.
Take Actigall at the same time (I didn't and got lucky)
I did all the stuff at home by myself, changed my dressing, hooked it up 2x/day etc. and had no problems. Midline in each arm for 3 wks then simple wrist port for 2wks. Good Luck!!
Posts: 44 | From Northeastern Wisconsin | Registered: Sep 2005
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Thanks guys for sharing your invaluable experience. I'll go for it.
Good health to all
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
posted
Remember to use a cyst buster along with the rocephin.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Ask for a comprehensive work up for coinfections before beginning Rocephin.
They can render Rocephin only just so helpful. Address the coinfections first if possible, then Rocephin.
Posts: 1062 | From CA USA | Registered: Jan 2001
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on rocephin for 6 1/2 months. I improved greatly on it. The picc line was pulled due to a fungal infection. I was not kept on oral antibiotics at the time, for the docs wanted to make sure I didn't have a fungal infection. I was not totally lyme free when the picc was pulled. I relapsed a lot in 3 weeks.
I am now on IM bicillin.
Take actigall while on IV rocephin. Have weekly labs drawn. Have a monthly gall bladder ultrasound, and monthly blood draw from the picc line to check for subclinical infections in the line. (These are what my LLMD had me do).
Good luck....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
WOW, very useful information and very kind words.
I'll remember these precautions.
Thanks again and have a great health.
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
posted
I couldnt handle the extreme neuro herxs it caused me. I also developed extreme candida overgrowth while on it. I wont do it agian. Although, before the neuro symptoms developed, It was the most wonderful NORMAL I have felt for years (but I only had 5 days of that, then 2 months of hell) I am very sensitive to this type of herxes compared to others. You cant be too careful with your diet tho, while on it. Start cleaning it up NOW.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Definitely do it!
I only got four weeks of it.
Monitor the he11 outta your liver numbers -- they can go thru the roof right quick! Take serious liver precautions while on it.
The herxing for me really wasn't bad compared to the previous months of doxy and high-dose amoxy/probenecid herxing (maybe my bug load had been "kilt off" sufficiently to spare me!)
Doing it myself was a piece a cake. I would infuse reading LymeNet in the morning and drinking my morning coffee getting ready for work. A few times running late I took my infuser to work. Fascinated my coworkers! A coupla times I even forgot I was hooked up to the little infuser machine and accidentally yanked it off the counter!
You can do it! Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
"It has been demonstrated recently that cells of Borrelia burgdorferi sensu lato, the etiological agent of Lyme disease, transform from mobile spirochetes into nonmotile cystic forms in the presence of certain unfavourable conditions, and that cystic forms are able to reconvert to vegetative spirochetes in vitro and in vivo. The purpose of this study was to investigate the kinetics of conversion of borreliae to cysts in different stress conditions such as starvation media or the presence of different antibiotics. Using the same experimental conditions we also investigated the possible role in cyst formation of RpoS, an alternative sigma factor that controls a regulon in response to starvation and transition to stationary phase. We observed that beta-lactams penicillin G and ceftriaxone, the antibiotics of choice in Lyme borreliosis treatment, favoured the production of cysts when used with serum-depleted BSK medium. In contrast, we observed a low level of cyst formation in the presence of macrolides and tetracyclines. In order to elucidate the role of the rpoS gene in cyst formation we analyzed the reaction of the rpoS mutant strain in comparison with its wild-type in different conditions. Under the same stimuli, both the wild-type borrelia and the rpoS knock-out isogenic strain produced cystic forms with similar kinetics, thus excluding the participation of the gene in this phenomenon. Our findings suggest that cyst formation is mainly due to a physical-chemical rearrangement of the outer membrane of Borrelia burgdorferi sensu lato leading to membrane fusion and controlled by different regulation mechanisms."
IV Rocephin did not "cure" my sister who is now dx'd "autoimmune". I thought it would work. I was mistaken. I've learned a lot since then.
She was on Tinidazole, more than once, Mepron with Azith also more than once...you name it.
I didn't understand WHY they didn't work. I do now.
Mg deficiency alters gene expression. The various drugs also alter the various gene expressions on the surface of this pathogen. This pathogen puts on a different costume all the time.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic