posted
I just had a discussion with my doctor about the next step in here regarding treatment. I'd say I'm about 80-85% better now - only lingering hand and wrist aches, the occasional headache and still get tired quicker than I think I should.
I've been on Rocephin since April, and currently have rifampin and pulsed tindamax in the mix too, along with all the supplements. He's recommending I stop all the ABX, and the candibactin and interfase plus, and see what happens over the next week. Then another week after that, etc.
When people have had symptoms return after stopping treatment, how long did it take for them to return? I'll be maintaining the picc line for now, but I don't want to have it removed too early.
I am hopeful right now - could the end of treatment be in sight?!?!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
In my case 3 mos. for Lyme symptoms to return and a matter of weeks for Bartonella syptoms to return once treatment is discontinued.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I've done that a couple times, and about 2 months for me.
Posts: 1927 | From se usa | Registered: Mar 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I got about 3 months under my belt before sx return.
In the past when Babs was a heavy hitter for me I could only go a few days to a couple of weeks before I would crash.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Interesting. We didn't discuss how long this test phase will last before the picc line comes out. I guess that will be on my list of questions for the next appointment!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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posted
it was only 3 days... I guess I'm not done yet. We will have much to discuss at my upcoming appointment.
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
WendyK, I am sorry you are having symptoms again.
From what I understand, when symptoms return quickly it is usually a co-infection. Do you feel it could be one?
Posts: 4681 | Registered: Oct 2000
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posted
My gut keeps thinking Bartonella, I'll be discussing that with the Dr. on Wed. I've been trying to refresh myself on bart treatments, and since I have the picc anyway, possibly asking about IV zithromax?
I've been on oral rifampin for a while, and did oral zithromax back at the beginning, but haven't been on it since March.
I felt like I made a big jump when I started the Rocephin, but progress seems to have leveled out once again.
The symptoms that came right back are a lot of aches in my forearms, wrists, hands and elbows, the lower half of my leg and ankles, and some aching in the hips and knees but not nearly as much as the rest. The daily sinus-like headaches have returned, and two days ago I got the neuralgia (?) back again - hyper sensitive skin and tingles along the left side of my neck and left arm.
Suggestions and thoughts are welcome!
-------------------- Wendy Posts: 253 | From Near Albany, NY | Registered: Jan 2009
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