posted
What doasage worked or did not work on your symptoms?
Did this doasage make an immediate affect or did it take an extended period prior to making any positive gains?
Posts: 38 | From P-TownOR | Registered: Dec 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am sorry I can not remember the dosage it was in 2000 the first time I was on it....
I infused once a day. I didnt make any progress until the seventh week. By the end of the third month I was 90% better.
Unfortunately I was under the care of a moron at the time and he said no one stays on IV more than 3 months and took my IV away. He put me on amoxy. 3 days after the picc was taken out I started getting much sicker.
I ended up sicker after rocephin than I was prior to it. But like I said the dr I was seeing at that time didnt know much about lyme,,,, he had the same treatment plan for every patient.
The second time I took rocephin I also infused once a day. sorry still years ago so I cant remember dosage. It helped some but I was only on it a brief time...
I developed gullstones from the rocephin and had frquent gullbladder attacks... I lost my gullbladder. switched meds once gullstones were discovered.
So thats my experiences with rocephin.
Just so you know there are othe IV abx that treat lyme.
posted
Thanks for your reply! Anyone else care to share their experience with this abx?
Mine has been 2grams per day (IV) with no improvement, three week holiday, and now back on it at a fraction of the original dose. Still no improvement.
Posts: 38 | From P-TownOR | Registered: Dec 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Depends on how long you were infected prior to treatment and what other treatment you have received.
My LLMD felt that you needed 6 weeks to see if it is was going to help and 3+ months to see improvement. Everyone is different though.
I did 2g IV for ~ 6 months.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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I infused myself one gram a day during a year (actually, almost 13 months). I was 50% better in the first couple of months and then about 95% better by month 6.
I would definetely recommend it, I was blessed because my insurance paid for it. It can get expensive after a while. My doctor says that higher doses of it for a shorter period of time are being used now with excellent results.
By the way, Rocephin can be bought in Mexico MUCH cheaper than in the United States. The lab that makes it is the same one, presentation, box..... everything except price. Last I remember, one miligram of Rocephin costs between 25 and 30 USD in Mexico.
What are your options right now, GotLyme ?
Posts: 712 | From Ottawa, ON, Canada | Registered: Sep 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on 2 gms IV rocephin 3 days on, 1 day off, with Ketek for about 5 months or so, the switched to doxy for some time after that.
It took 4 1/2 months of IV rocephin along with the oral antibiotic for me to feel like I was in the land of the living.
The picc was pulled at 6 1/2 months due to a fungal infection in the line.
Make sure you get a blood culture done monthly from the picc line to catch subclinical infections.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Since my symptoms continued to progress (ALS like) during the 3 months of 2 grams per day, my LLMD took me off the abx for 3 weeks. I am now on only 150 mg per day and my symptoms continue to progress.
I believe my dr is concerned that the 2 gram per day dose was causing my symptom progression (herxing) although I am not sure that the abx made much of a difference. I guess that some of my sypmtoms get worse with the abx, but nothing that is dramatic.
Luckily I have not had trouble with ins. coverage.
My main goal is to find out what abx protocals and combinations have worked for others with neuro lyme symptoms.
Should I know after 3 months of 2 grams per day if Rocephin is the right abx for me?
Posts: 38 | From P-TownOR | Registered: Dec 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
150 mg of what?
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
What are your symptoms exactly right now GotLyme? You could have co-infections that are causing your ALS presentation, it might not be the Lyme causing this. Were you tested for other co-infections? Mycroplasma is a big factor of ALS presentation.
A study was done that showed 85% of ALS patients had mycoplasma infections in their CNS.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
I have been on IV rocephin for 7 months now with barely any improvement. The first 6 months was 2 grams once a day every day and now it is 2 grams 2 X day for 4 days on 3 days off. My llmd wants me on it for 15 months. I have severe neurological involvement. Legs have not worked at all for 3 years now and was diagnosed with"MS" 10 years ago. Hard to know if I will get better. I am also on Tindimax 2 X day.
Posts: 85 | From Eugene | Registered: Jun 2005
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My main symptoms are muscle - weakness, twitching, spasms, and cramping.
I have minor symptoms that include decreasing eyesight, poor memory/word selection, shooting pains...
The main symptoms are all clasic ALS symptoms and have been progressing over 2 years. The only change I felt going off of the Rocephin for three weeks was a mellowing of the twitching and spasms.
Now that I am back on the Rocephin at a fraction of the 2 gram per day dose (150 mg) that I was on, I am having increased twiching and spasms. The rest of my symptoms continue to progress.
Posts: 38 | From P-TownOR | Registered: Dec 2005
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posted
Sorry Luke I forgot to mention that I have not been tested for Mycoplasma, and the two LLMD that I have seen have not tested me for Mycoplasma after I asked them if it was a posibility.
Has anyone else tested positive for Mycoplasma and had ALS symptoms?
Also, is Rocephin the treatment of choice for Mycoplasma?
Posts: 38 | From P-TownOR | Registered: Dec 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I had an severe ALS presentation and tested positive for mycoplasma fermentans in my CSF.
I'm 90% better at this point. All muscle wasting has been suspended and my strenght has returned to normal.
It took prolonged antibiotic therapy and physical therapy. I'm still on antibiotics today and I relapse if I go off them in less than 1 month.
Rocephin has NO effect on mycoplasma because it lacks a cell wall. See this post for antibiotic choices.
posted
I also have neruo lyme and myco along with babs, bart, erhlicia. I had classic ALS symptoms along with symptoms from the co-infections.
I know of a couple of other people personally with neuro lyme being treated by 2 other docs who used rocephine IV first for up to 4 to 5 months and when it looked like they leveled off on the Rocephine they switched to IV zith. I was close to needing a wheel chair and one of the others was in one for a time.
I did the same protocal and into my 4 week of zith things really started to turn around. The others experienced the same progression, but then again we all had the same bugs and possibly the same strains.
My myco still is not gone yet but it is getting much better. Rocephine did bring it dowm and then the zith brought it down further. I have been getting the best results on the myco when using combo ABX against it.
Posts: 582 | From milwaukee wi | Registered: May 2005
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WildCondor
Unregistered
posted
4 grams helped me! i got gallbladder sludge, and stopped it, switched to Claforan, then my gallbladder healed itself w/o surgery. Rocephin is good, made me have herx rages but it was worth it.
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