Well I saw my LLMD yesterday and it was a non-event.
First of all his office staff apparently mis-interpreted his message of not needing to see me until my next regularly scheduled appt.(end of May) as meaning the doc still wanted to see me earlier -- which he requested when we both thought I'd be going off levaquin.
Due to this, he appeared to be a bit rushed yesterday. I guess in his mind he had just seen me 2.5 weeks ago and not a whole had changed.
I did get out the following:
1. To keep going with the low dose since I'm herxing. He thought a more-manageable herx isn't necessarily such a bad thing. Based on how I feel we can always try to ramp it up to 500 mgs later. He had no problem with me breaking the pills in half.
2. I asked him if any of his patients had bad experiences with levaquin and he did say one had some lingering tendon issues but nothing other than that. I didn't ask him how many of his patient are on or have taken lev.
3. I also asked him for his thoughts on floxing and what did he make of whole web-sites dedicated to the dangers of flouroquines. He apparently had not heard of those issues. A bit unnerving.
4. He also prescribed a proton pump inhibitor to go with the lev.
5. And because I felt rushed I forgot to ask him if I should be taking mino too. I'm going to play it by ear and may take it on my own pending how I feel.
On another note - the herxing seems to have subsided and although my symptoms of head creepy crawlies are still present they feel a bit reduced. I've actually felt pretty good relatively speaking the last 2 days. I'm not necessarily sure that's a good thing or not.
Chris
Posted by hiker53 (Member # 6046) on :
How long have you been on the levaquin? Are you taking anything with it? Are you active? I have these questions as I just got diagnosed with bart and am trying to decide which drug to take. I am pretty active --mow my 1/3 acre with a self propelled mower, walk, will ride my bike this summer. Just wondering if levaquin is right for me or if I should go with rifampin. I will probably try Deseret Biologicals homeopathy first even if doesn't cure it. That way maybe I won't have to take such as high dose of a drug or for as long. I hate to see my summer be a long herx, but I don't want to do the drugs when I am teaching, either. I hate these TBO's!
However, it could always be worse, I suppose. Hiker53
Posted by Tincup (Member # 5829) on :
Good to hear you at least got some information. And that you are starting to feel better.
Always a happy tune to hear that!
Good luck!!
Posted by mrpotto (Member # 15123) on :
Hiker: Go figure that your active with a handle like Hiker!
I am an active runner (25-35 miles a week). Thats down some since my TBIs - a few years ago I ran 35-50 miles a week regularly as a semi-competitive distance runner.
Not advisable to run much on levaquin at least for me (I know another member of this forum - local man was able to run for a while on levaquin).I got some sharp achilles tendon pain 10 minutes into my first jog on levaquin and had to stop running to be able to stay on the drug. Thats been the worst part. I'm trying to walk but even that I feel I have to go easy so its not as enjoyable walking thinking you blow a tendon if you step in a rut.
A couple years ago I tried rifampin and it didn't go much for me thus the attempt with lev.
I wonder if any has tried the desert biologicals bart formula. If so please chime in.
****************** TC: Thanks for the well wishes!
Chris
Posted by Alv (Member # 15192) on :
I didand did nto do anything for me and than tried rifampin and still did nto eradicate it and tried LEvaquin caused tendonitis.
Forced to swithced to Rifampin but -I know is not the solution of eradication .
Posted by mrpotto (Member # 15123) on :
Alv did you feel the lev was working for you before the tendon issues?
Perhaps lowering the dose would not cause the tendonitis?
Did your tendon issues go away after you stopped?
Posted by Gabrielle (Member # 5329) on :
Mrpotto,
Thank you for your update on your doctors visit. Good to know at least that he doesn't mind you taking the lower dose.
My original plan was also to take 500 mgs of Levaquin but I started out with 250 mgs. Due to all these tendon pains I'm still at 250 and I don't even dream of 500 anymore. But as I'm only 115 lbs maybe this is sufficient anyway. I hope!
I'm doing now the pulsed therapy as lymeladyinNY has done. What use is it to force the therapy when you end up with a torn tendon and then you have to give up this tx completely? I'm also encouraged to do the pulsing because Dr J. Sch. in Florida writes in his preview of his upcoming book that one should do a few days break every month during the treatment of Bartonella. He will explain the reasons in his book but I guess it is to let the bugs come out of their hiding places.
Since two days I have a constant burning pain in both of my Achilles after I tiptoed and got a short but very strong burning and cutting pain in one of the tendons.
I tried the Rifampin some years ago - I didn't feel much different but I took it only for 1 month.
Take care,
Gabrielle
Posted by JasonK (Member # 14071) on :
I think i am going to drop down to 250mg. I have been off it for a couple of days after just taking 3 days worth of 500mg with a proton pump inhibitor.
I don't think i could do 500mg but you never know. i have to say after just taking 3 days worth my creepy crawlies are disappearing, it feels like a miracle with the exception that i am feeling the pain of levaquin. Weird thing is all my minor tendons feel sore and my achilles is fine.
I am also on 300mg rifampicin daily, and been on this for months and it has never reduced the crawlies as much as 3 days of levaquin has, i just so wish it wasn't so hard on the joints and tendons.
![[Big Grin]](biggrin.gif)