posted
If I could go back, I wouldn't have put my body through those 2 months. I also wouldn't have wasted 2 months of insurance covered IV coverage for it.
It was not helpful for me. I am trying to get my potassium back where it is supposed to be. It was a nightmare for my particular body.
Maybe others have success. I have now sworn off antibiotics because if it. And I was treated with 3 years of orals, Bicillin, then 6 weeks IV Rocephin previously.
You have to realize that you will be a guinea pig.
Posts: 115 | From US | Registered: Sep 2014
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posted
Iv Daptomycin alternating weekly with Iv Rocephin along with oral Doxycycline. To try to help flares: Iv Glutathione 3 days/week and full flare protocol which didn't put a dent in it. A Side effects: massive sweats, worsened pots, difficulty standing, very hot all over, fever worsend, extreme weakness, bed bound, hypokalemia despite adding potassium rx, flares like I never flared before.
In the end the only time I was ok was when I was hooked up to IV saline 4 days per week.
I am grateful to have come out alive. So many nights I went to sleep so sick I was shocked that I woke up the next day.
Everyone is different. Just sharing that what works in the test tube magnificently doesn't automatically work in the body.
Posts: 115 | From US | Registered: Sep 2014
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posted
Thanks for the info - did you have any reactions to the other medicines that you took? Also, were those side effects or a strong herx? I've read daptomycin makes people sleepy in the day and insomniac at night. Thanks,
Posts: 69 | From NYC | Registered: Apr 2015
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
A.G., I'm sorry that the Daptomycin protocol made you worse. I had mentioned on your IV Daptomycin thread about the possibility that Babesia could be causing your worsening. Did you ever address that with your doc?
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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posted
So I just read through the study again in detail and I realized that for testing the regrowth of the lyme following antibiotic therapies (seeing how much grew back after 15 days post-treatment) - for that experiment the lyme they treated had only been growing for SEVEN days. In the section before this, where they demonstrated the strong efficacy of the drugs to kill the lyme, the lyme had been growing for TEN days. And at ten days, the treatment left like 19% of the lyme I believe.
So... its possible they regrowth results aren't as promising as I thought because they didn't do the test on 10-day old lyme for some reason. There was a substantial different in the makeup of 10-day old lyme vs 7-day lyme where the older lyme had many more persister bacteria.
I could be reading / interpreting this wrong but I don't understand why they did the second test with 7-day lyme growth instead of 10 except that regrowth would be a lot less likely.
posted
I am always interested in new treatments, but would not take antibiotics. I was treated by the President of the lyme Assoc. It did not help and wrecked my gut. After loading with probiotics and nutrients, I followed natural herbals with Dr. Stephen Buhner and others. These have helped enormously. I have to continue addressing the coinfections. Everyone is different, but natural therapies restore the bodies energy and ability to function in spite of the infection. Hopefully some day there will be a drug that is nontoxic and cures Lyme.
-------------------- Evelyn White Posts: 1 | From New York | Registered: Feb 2016
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
DD did the woohoo new IV dapto/rocephin oral doxy pcl. It was a 3 week thing fling that cost us thousands more than I want to remember.
Nadda, zilch, zero in terms of results. We could have predicted it. If we had a dollar... yadda yadda yadda, you know the rest.
Oh and Evelyn/1002cats I am glad you are no longer seeing him. We wasted tens of thousands on him. He might be prez of ILADS now but he's as useless as a "fill-in-the-blank"
And no, he wasn't the one who prescribed the woo-hoo dapto protocol. But he prescribed a whole lot of other stuff that was equally worthless and so very, very expensive.
Posts: 1885 | From here | Registered: Jul 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Was a waste of time and liver function for me.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
what everyone needs to remember is that in vitro (in a test tube) results do not necessarily correspond with in vivo (in the human body)
sorry to hear it has not helped people on this thread
very sorry indeed, as we really need something to work well
wondering if there are those who did get better results
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Any other updates on folks who have used the new daptomycin drug combinations? Seems to be a lot of bad experiences?
Posts: 123 | From Tahoe | Registered: Oct 2016
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