trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Hi everyone!
I know, I know---you arent doctors. But I would like to know your opinions on my situation:
Just found out I have a high bart titre. Doc wants to start me on zith and rifampin asap. Have been off all ABX for 3 weeks because of surgery and hormonal issues.
I have had bart for at least 6 years, maybe was infected the first tick bite in 1990--so maybe much longer. Never been treated. Treatment progress for lyme sx has been stalled hopefully becoz of not treating bart.
I am about to embark on a 4 week long road/kayak/camping/conference trip to the pacific northwest.
I want to wait to start bart treatment till after this. I am feeling pretty stable off the meds and it is SOOOOOOOOO hard to schedule meds while traveling. Not to mention herx while traveling.
The way I see it is that I have waited this long, what is another 4 weeks or so?
Opinions please, thanks a bunch! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
My opinion: wait until after the trip. You may have a bad reaction to the meds and that is not the place to be sick (i.e. no easy access to health care).
I waited to start Levaquin until after my wedding and honeymoon and thank goodness I did, because I had a terrible reaction to it and had to stop. I wouldn't have wanted to be in Bermuda and deal with that!
Just my two cents...
Posts: 331 | From virginia | Registered: Nov 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Trails, try to take as much to boost your immune system as possible so you do not get worse before getting back..Have fun..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
In the same position I would wait to start treatment. Do what ever you can to keep yourself feeling as well as possible during your trip. Heck, you've been through an awful lot lately.
Last year prior to my trip to England I had been on Zith for 2 months (of continuously escalating herx). Ugh!
Anyway, the doctor told me she couldn't have me herxing like that in another country. It was a good point. I stopped for a month or so and then began a new treatment when I got home.
It was definately the right decision, I'd have been miserable otherwise.
And I hope you have a great time on your adventure!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Trails,
First, I think it's great that you're able to get away for a month...and the trip sounds wonderful.
If I were in your situation, I think I'd probably wait to start the new treatment regimen.
I know rifampin has knocked several people for a loop. In my case, it left me with a killer headache for several days -- a headache nothing alleviated. I would have been miserable if I'd been on the road during that.
Since you're already feeling pretty good, I say enjoy yourself and get back to it when you come home.
Safe journeys!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Happy trails to you trails.
Have a good time -you have earned it. And do what the kind people have suggested -pack your supps-take it easy- and have FUN!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
First of all, have a great time! Just going away and having fun is therapeutic from a mental health perspective - and we patients need to lift our spirits as much as possible.
Secondly, I know two Lyme patients (one is a healthcare practitioner herself) who found that Rifampin really disrupted their hormones. Given that you're dealing with hormonal issues anyway, you might want to chat a little extra with your LLMD about whether now is the right time to put extra stress on your hormones, or whether there are some tests that could be run while on Rifampin to make sure things aren't getting out of whack.
Please let us know how your vacation is and how you do on the Bart treatment - a lot of us have Bart to deal with and appreciate any insights.
Thanks, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Wait .........
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
WAIT!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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bettyg
Unregistered
posted
Trails, enjoy yourself while you can, and build yourself up like all suggested. Dana, you took my slogan of Dale & Roy Rogers, HAPPY TRAILS TO YOU UNTIL WE MEET AGAIN TRAILS!
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
The "WAITS" have it! Yippee!
I'm with THEM!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I did Levaquin for 3 months for Bart. I did Herx at first and really weirdly, so I might wait, but I would also say it started to work quickly and really relieved alot, fast, then took a while for other symptoms to start abating..
Posts: 298 | From los angeles | Registered: Mar 2006
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey trails,
i would wait! good for you, going on an adventure! have fun and take lots of supps.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Rifampin either seems to be a tremendous help or cause a tremendous herx. One month after 6 years is a drop in the bucket.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Thanks so much everyone!
I do think I will wait. I will chat with LLMD tomorrow.
Jill---thanks for the reminder about the hormones thing. Someone recetnly wrote to me about this. I need to find out more info about it. Which hormones are affected? I think it was FSH??? or something....I forget. Yeah---This might NOT be a good time to deal with more hormonal stuff, but I have gone onto the BC pill and things have settled down CONSIDERABLY!!!! Hooray for hormone pills. I know the fake stuff I am taking isnt the best, but I talked a long time with a LL gyn/surgeon and we decided for a few months (3-6) this pill would be easiest for me. Ihave taken it before and tolerated it well.
As far as supps and building my immune system.....I stopped all supps almost 2 months ago. I noticed absolutely NO difference. I also noticed NO difference while taking them for about 4 months. My LLMD isnt a supp pusher and believes the jury is still out as to whether they really benefit lymies. I tend to be with him on this. I know some find awesome relief in supps....I have never found anything but less money in my bank account.
I will let you know what my LLMD says tomorrow.
THanks for helping me think this thru some more guys, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Update:
LLMD said yeppppppppp-----WAIT.
He wants me on levaquin, but I am soooo scared of the tendonitis. So I said Rifampin. He said Rifampin is now considered to be the 5th choice of med with levaquin, cipro, zith and I forget the fourth coming first.
Still I want to try to Rifampin. I hear good things from folks here. I will start a new topic about Rifampin shortly.
I will start taking it on the way home from the trip.
Thanks for helping me out everyone! T
Posts: 1950 | From New Mexico | Registered: Sep 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Wait.
I feel better knowing that there are others out there that need to take it slow also.
I am going to take a leave of absense from my job just do I can go on doxy!
It helped alot in the little amounts that I taked it but when I do take it Im in too much pain to do much of anything.
Posts: 2905 | From New England | Registered: Sep 2004
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