Hi everyone. I haven't been on this site for so long, but everyone has always been so helpful when I do visit. I am in my 15th month of treatment of various oral abx. The good news is that I feel great. I would say that I am 98% back to normal! My LLMD says 100% is very possible in may case and has suggested the next phase of ABX (Clindamycin and Quinine, rotated with Biaxin and Plaquenil)to wipe out what is left. The fact sheet on Clindamycin looks very scary. I am currently on Flagyl, and thought that it had done all it could, but I now feel that it may still be working. Hard to put all my questions in writing but here goes.
I have been on Flagyl for 5 1/2 months. Anyone been on it this long, or longer with continued improvement?
I have had some very mild blurred vision type stuff. Seems like peripheal blurriness, but if I blink my eyes it goes away. I know ABX will change the flora in eyes. Is this all it is, or could ABX be damaging my eyes.
Fact sheet on Clindaycin talks about severe, rarely fatal, intestinal problems. Is this as scary as it sounds? I am so close to 100% don't want to cause permanent damage with ABX. But, in same breath, so close to normal, I don't want to leave any seed to grow, so to speak.
Any advice would be greatly appreciated.
Flowersmile
Posted by Boomerang (Member # 7979) on :
How wonderful to read that you are feeling so much better!
I don't know the answer to your question......but wanted to let you know my hubby had vision problems before he ever started treatment. He also had blurry vision at times while on Doxy and then Zith. So far, for him, it's just been problems that lasted a few minutes, and then was gone.
I think it's part of the ABX working.....??
How has your Flagyl experience been? Hubby just started it this week.
Again, so glad you are feeling so good! Encouraging to read...!
Posted by bettyg (Member # 6147) on :
Boy are you FORTUNATE; we envy you.
Please help us chronic lymies by haing shorter paragraphs of 6-8 lines of text and DOUBLE space inbetween so we can read/comrehend them...thanks!
Posted by lou (Member # 81) on :
I had no problems with clindamycin. Of course, that doesn't necessarily apply to other people, since we all seem to react differently.
The thing that more people have trouble with is quinine, but some on this forum have used it.
Posted by psano (Member # 7785) on :
That's wonderful to hear. I have no experience w/the abx you may be taking, but I've already decided that once I get to the point that I can get off of abx, I'm going to continue taking herbal remedies I've read about on this website.
I don't want to leave anything to chance.
Posted by Gabrielle (Member # 5329) on :
I took Clindamycin for a long time and I had no problems at all with it.
Just be sure to take lots of probiotics with it as it can cause yeast overgrowth. But other abx can also do this.
Congrats to your 98% !!! Posted by meg (Member # 22) on :
My instinct is to follow what your LLMD recommends at this point, despite your fears. Talk it over with him/her.
In all honesty, 98% is NOT 100%.....and I would keep at it for sometime after acheiving that 100%.
So glad you have come so far~!
Posted by NP40 (Member # 6711) on :
My son had some vision problems while on flagyl so it may be the drug itself. He said things seemed "far away". It cleared when he stopped flagyl.
Posted by hiker53 (Member # 6046) on :
I did I.V. flagyl and clindamycin for 5 months. All I got was a raging systemic yeast infection and fatigue (and lost 30 pounds), but no major herxes or eye problems.
Make sure you lay off sugar and keep taking probiotics. Hiker
Posted by liz28 (Member # 4946) on :
If you haven't been on the site for a while, you will not believe the rapid pace of change that has set in. While you may not be thrilled at the idea of reading through the past year's posts, it's worth your time and energy, because the treatments for nearly every problem have been overhauled.
Since we all have different issues, not everyone gets excited about the same new treatments. But I was disabled for four years, changed abx a year ago because of various Lymenet discussions, and now appear to be free of Lyme, mycoplasma and bartonella. The only one left is babesia. This was unthinkable a year ago.
For me, flagyl was covering up the bartonella. Once the flagyl was removed, the bart returned with a vengeance, but went into remission after five months of rifampin and ketek. Watch out for the herx, though.
The Lyme has responded so far to omnicef and ketek. No symptoms in over two months.
The babesia, oy vey. Read through the past month's posts, and you'll find a huge debate. But there's a lot of new stuff. No abx is the last hope anymore.
Posted by trails (Member # 1620) on :
Biaxin and Plaquenil would be doing what flagyl is doing--cyst busting, so i am not sure why the LLMD wants to double up that way...maybe b/c plaq gets the cysts in a different way than flagyl?
I am on Plaquenil and amoxy and probenicid. It is kickin my butt. I have muscle pains that I havent had in a YEAR. Hoping it is reaching the chetes, but worried it ISNT, ya know?
Too soon to tell.
I was treated in 2001 and got about 95% better before stopping the ABX....had no symptoms for almost 4 years then MAJOR relapse last year out of NOWHERE. Was excercising, working, even completed a triathlon...but it still came right back in.
So IMO---I would stay the course. Try the new treatments, if you don't like how you feel, you know you can stop and that you will be better off than you were 15 mo's ago!
Inspiration for us all! Thank you.
Posted by farah (Member # 8496) on :
Push for the 100%. The better you are, the better your immune system will control whatever keets are left after you become totally asymptomatic. The visual issues can also sometimes be a result of the bacteria residing in the area of the eyes, and that should be considered seriously.
Farah
Posted by HEATHERKISS (Member # 6789) on :
Go for it. Why stop now?
Posted by flyers999 (Member # 1397) on :
Flower,
Glad to hear your treatment has been so successful. Plaquenil has been known to affect the eyes. Some docs require their patients to get an eye exam before prescribing it. If I were you I'd see an Optometrist and get their opinion before starting Plaquenil.
Posted by flowersmile (Member # 7447) on :
Thanks to everyone who responded. Helpful as always . I will plan to get my eyes checked before starting the next round of ABX. And then go for 100%. Good luck to everyone else!
Thanks Flowersmile
Posted by treepatrol (Member # 4117) on :
I would if everything is running normal liver etc Keep Treating at least another six months alternating abx's that worked especially flagyl on and off.
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. I will plan to get my eyes checked before starting the next round of ABX. And then go for 100%. Good luck to everyone else!