I have been experiencing big improvement on levaquin. I am wondering who else and the story. I had CDC positive lyme blots, bad spects,etc. I've had numerous course of IV therapy though and nothing really worked except for IV zithro and now levaquin.
The thing is, levaquin doesn't really work against lyme, at least, not in the laboratory. I have marginally positive basic bartonella serology. I have never been tested for brucella.
Anyway, while this is very good news, I'm curious as to what was making me sick. Whatever it was, it was nasty and it was causing an encephalopathy as reflected by my own symptoms and additionally moderate to severe global hypoperfusion on spect at CU.
I'm interested in other people's stories.
The major change so far in me is a decline in somnolence, sleepiness. It's only been two weeks and I can tell a difference - I am awake all day and less confused, whereas previously I had to nap every few hours and in general felt exhausted and disoriented to varying degrees even when I was awake. I've also noticed a reduction in pressure headaches and eye pain/burning, and a developing sense of overall 'good-feeling' or vitality. I'm even excited about celebrating christmas whereas for the past many years it has been a struggle.
Hopefully this trend will continue.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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I was seeing steady improvement since the beginning of treatment, from January till June. Then I went on Cipro for bacterial dysbiosis. I felt so much better on the Cipro, but at the time didn't relate it to that.
I went back on Amoxy and declined through the fall.
So, my LLMD clinically diagnosed me with bart because of my response to Cipro and started me on Levaquin. I felt bad the first six weeks and now am feeling the best I've felt in a long time.
I also did Humaworm and started on Limited Cowden about the same time, so I don't know how much my improvement is attributed to them.
I really turned the corner recently.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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treepatrol
Honored Contributor (10K+ posts)
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posted
I ewas on levaquin I think it works on lyme antway first month herxed second not as bad felt pretty good 3 month then about half way through 4 month tear snap roll up a tendon in quad then one in my groin hurts immeadiatly taken off levaquin and sore tendons well into the second year! And ocasionally in the winter they get sore notsofar yet this winter though.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
thanks. read your post and others..went to my husbands Dr. today and asked about Levaquin and the poss of Bart..he agreed..said it might work..he will take anything for help..has been 6 yrs and only 1 yr in treatment..bas head pain and eye pain all the time..very week and can't be around light or noise..so we are hoping..anything to help..good luck to you..and thanks to all and this site
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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One other thing to be aware of is that Levaquin kills many other bacteria -- can't remember now if it is gram negative or gram posiitve bacteria that produce ammonia.
Hubby had elevated blood ammonia and symptoms of hepatic encephalopathy -- somnolence or almost a stupor after eating high protein meals plus mental confusion and increased neuro symptoms -- walked like a Parkinson's patient etc.
This was 4 years ago I think. Anyway hubby had the IV Rocephin (a 2 month course spread out over 3 months) and then he had the elevated blood ammonia issues for the next 5 months when he was off antibiotics.
Dr B clinically diagnosed Bart and put hubby on that. Initially for 1 month -- encephalopathy improved but didn't totally go away. After 2 more months on Levaquin the elevated blood ammonia returned to normal and encephalopathy symptoms had mostly been gone for the last 3 years or so.
Around the same time hubby's PCP did some testing and found an overgrowth of klebsiella and enterobacteria and a couple of other ammonia producing G.I. bacteria. These bacteria were not extremely elevated -- only mildly elevated.
I posted a link to a journal article recently saying that Bart also produces ammonia. Don't have the time to look for the previous post right now.
Glad you posted this. Just helps me to remember that the encephalopathy hubby has been having is most likely Bart related. Never believed that he was simply overmedicated.
Talked over notes from Dr B's speech with hubby and we came to the conclusion that the reason hubby's mental confusion has decreased is that while in the hospital he has been off antibiotics and for him the cytokine storm or inflammatory cascade caused by the IV Doxy has resolved. In other words he is over his herx reaction for now.
He has never been able to tolerate multiple antibiotics or get to therapeutic dose on many others. I really think the cytokine storm is a key issue for hubby.
Since September, oral Zithromax, IV Cipro and IV Doxy have all put hubby in the hospital. These are all Bart/mycoplasma meds.
Bruce -- If you have not been tested for Bart from the Fry lab by a bloodslide then I would suggest that testing. Otherwise, mycoplasma is also a possibility according to Dr B.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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