feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I treated babesia for about 5 months. First with Zithromax and Mepron and then with Malarone and Biaxin.
I had bad herxes and no improvement.....well maybe some: heart sx not as bad, air hunger not as frequent.
The month of February I was on Levaquin only. Again with bad herxes, bone and muscle aches, eye problems, spaciness, agitation, weakness...every bone hurt, even the bones in my face and nose..ear pressure, severe neck stifness and decreased range of motion.
Oh and burning and sweating.
Saw doctor on 3/3 and new protocol of IV Ivanz with alternating every 2 weeks between Alinia and Tindamax....he thinks that Lyme has come to the forefront again....
I am not so sure about this. Been off of levaquin for 6 days and hurt even more, brain is goofy, incoordination and bad muscle pain and stiffness....seems like Bart has reared it's ugly head and needs more treatment.
What are you're thoughts? Anyone have exp. with Ivanz? Have heard some very good things about this protocol from of my doctors other pts.
I have pos. lyme, pos. babesia WA-1, Bartonella (clinically), and Pos. CPN.
I have not had ANY improvement since my first 3 months of tx with IV Rocephin and my joint pain improved...other than that, just more symptoms.
Homebound except for doctor appts. and haven't ddriven in 2+ years.....
Would like some input, tossing around of some ideas etc.....No need to preface with I am not a doctor, I understand this..
Just brainstorming!
Thank you in advance, Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi FF,
Sorry you are still having a rough time. Just my quick thoughts...
-it does appear you had some improvement treating babs if your heart and air hunger symptoms are not as frequent...from what I have seen babs takes a long time to get rid of...my kids have been treating for a year and still test positive
-bart symptoms come back in about 5 to 7 days after stopping meds with my kids...so if you are feeling worse since stopping Levaquin perhaps the bart is still there. They also herxed on Rifampin for about a month until we saw improvment.
-Sorry - know nothing about Ivanz...but could you possibly pulse Factive or continue with Levaquin to get at the bart? Sounds like you still have it if you are getting worse after stopping. One option would be to restart the Levaquin to see if you get any relief. That would give you the answer about the bart I would think.
-Why did he stop the Levaquin? Perhaps do a post to see how long it took others on Levaquin to see improvement.
Hope this helps some,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi FF -
I had Babs Lyme and maybe Morgellins (spelling)- for 18 yrs untreated and I was close to death--
First 3 months of treatment I made a large amount of progress - No herxing --
Then I had a Non Stop herx that lasted about 12 to 16 months - it was Hell --
All of my symptoms got MUCH worse ---
after Many months I did have slight improvement and got better with time and treatment -
Progress was Very slow and Many ups and Downs-
After about 3 yrs of treatment I started making large amounts of progress and today after 5 Long years of treatment I Mostly have my life back --
I have gotten Better--You will TOO --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Personally I think Levaquin by itself is not enough to get bart for many people.
Don't know enough about the Ivanz to know if it has any effect on bart or not.
Have you ever taken Rifampin?
Could try Levaquin with either Zithromax or Rifampin. Or Rifampin plus Zithromax.
I just posted an update on hubby a couple of days ago. His new protocol of taking Zith, Rifampin and Mino late in the day so that all 3 meds reach peak dose overnight may be helping. It has only been 3 days so too early to say for sure. Will know more in another week or so when I ramp up his meds.
Need to remember that rocephin is bacteriostatic for bart and not bacteriocidal. So that would explain why you did really well on that -- was working on both lyme and bart.
And in my opinion, the zith you took with the mepron may have actually worsened your bart infection. If you actually killed off infected cells then the bart would come out into the open and you had nothing on board to kill that. This is what seemed to happen to hubby -- we finally got rid of his babs and then the bart had a field day.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
tickbattler,Groovy and Bea,
Geez, thank you so much for your responses. Lot's of hope and good info. It's funny, but my gut tells me how i need to treat things after so long.
Seems like IV Ivanz and Alinia/tindamax isn't right...but who am i to say? Will give it a go and see what happens...
Feel like Mr. Bart is my biggest player...him or BLO. Maybe herbs along with the IV to address Bart? Kday is having an obvious reaction to HH.
Thank you for all thoughts, best to all of you who are in the trenches as well:)
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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