kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am just curious as to how long after you were on rocephin and or on treatment n general did you go from being flat on your back for the most part to being able to be up and about for the most part?
In other words, when did you turn the corner?
I think I can see the corner, but I am wondering how far off it is.
Thanks!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Personally I started seeing improvement after 4 to 6 weeks on 1 gram of IV Rocephin per day.
But it wasn't until about 3 months after being on Rocephin that I could go back to work again and lead a "normal" life. Still had symptoms but at least they were manageable.
And I didn't stop infusing myself until after almost three months of having no symptoms at all!
But that's just my case.... hope this helps and that you indeed are close to the corner!
GOOD LUCK!
Posts: 712 | From Ottawa, ON, Canada | Registered: Sep 2002
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posted
I noticed a major difference on the second day of infusing. I was doing 2 grams per day along with 750 mg. of Flagyle. My insurance co. would only allow 6 weeks of rocephin. In my case, this was not enough. After that I went to oral Zithromax 600mg. per day and Flagyle. Lost some ground but slowly started feeling better again. Added Mepron for babesia last month and quality of life has greatly improved again.
I have heard from my llmd that some of the top llmd's are having good success rate with the Cichon protocol. 4 grams rocephin IV per day for 4 days a week, Flagyle on the other 3 days a week. This goes on for 12 weeks.
My doc wanted me to do this, but I will have to pay for everything out of my pocket because of inurance policy. Saving my $ to try this when I can.
BW
Posts: 43 | From Houston, TX, USA | Registered: Jan 2004
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I went from death's door step straight to IV Rocephin/Oral Zithromax. I could see a difference around week 2. It was a slow, but steady progress. I did 8 weeks of this combo. When I came off, I still had some little nagging symptoms.
I went on high doses of mixed orals for another 4 1/2 months. Quite honestly, I think they were making me worse.
I really saw the biggest improvement when I stopped all abx and concentrated on Candida and started different cleanses.
Also, before stopping abx and ever since stopping, I have also been "rebuilding" and supporting my immune system. My adrenals and thyroid took a huge blow from Lyme.
I (and the rest of my crew) are abx free now for 6 months.
Hang in there. There is light at the end of the tunnel.
frenchbraid
------------------ Stay positive. Smile. People care.
Posts: 948 | From Northwest, NJ USA | Registered: Jul 2003
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IV Rocephin and oral Biaxin XL in April and May this year. The joint pain felt gradually better on Rocephin, but my brain fog never did clear up, if anything it got worse. Maybe it was a brain herx, don't know for sure. The other thing was that I was fatigued on Rocephin.
I'm glad my LLMD warned me that when you come off the Rocephin, you will feel like you are backsliding...that is normal. My backsliding was all fatigue.
Been off the Rocephin IV now for 11 days and I'm on Biaxin XL and Spectracef. No joint pain from the Lyme, but I'm still waiting to get my brain back. Wonder if I'll ever get it back.
Hang in there...takes awhile.
Nancy
Posts: 963 | From N. Olmsted, OH USA | Registered: Jan 2003
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
I have 2 colleagues who got bitten and were misdiagnosed for about 5 yrs. They were lucky as a few months of IV Rocephin gave them their lives back. I don't think they had metals or coinfection issues that complicated their prognosis.
Posts: 1010 | From Mars | Registered: Feb 2004
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posted
Kam, I feel for you because I know exactly what you are going through! Maybe I was even worse than you. It took me about 6 weeks to begin feeling somewhat alive again and then it was just exercise, exercise, exercise! Please get into an exercise routine if you're not doing it yet!
Posts: 68 | From BETHLEHEM, PA | Registered: Aug 2003
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thank you for all your responses. My brain is out with Nancy's brain right now so I will not be able to answer each of you as I would like to.
All of the responses sounded hopeful and were encouraging. Thanks again.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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