posted
Hi all, Been watching this site for about a year now. Most of my questions have been answered via searches and other peoples' questions. Thank you!
My LLMD is great at allowing me to participate in my care so I need to be as informed as possible. Here's my ?
I have been on Doxy (improvement), then Zith/Plaquenil (big improvement here), then back to Doxy (going downhill), then Zith/Plaquenil and Amoxicillin (slight improvement), then Flagyl, Amoxicillin and Augmentin (some improvement but not much), now back to Zith/plaquenil.
Overall Doc says I am not improving like I should be after 1 year and 5 months strong oral antibiotics. He says we may have to try something else. I assume he means shots or IV.
Would like to exhaust ALL the oral possibilities first. I know there are different ones I haven't been on but I have been on most of the 'families' of antibiotics.
I also know everyone is different. At this point in treatment do you have any recommendations of oral combinations I could suggest?
Also, I am trying to be patient for results but beginning to wonder if I am spinning my wheels. I had a great initial response and then went downhill. Have not been able to recover since. I was better last summer than this summer.
I am taking supplements to boost immune system and protect GI. I am continuing to lose weight on orals.
I would like to know where you would go from here? Thank you for listening. Cathy
Posts: 71 | From Warren, Mi, USA | Registered: May 2003
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Sounds like something might not be working right, or you have a coinfection that is un checked. If you have babesia and lyme you might want to concider Mepron and Zith . I seem to think it has worked real well for alot of folks, and more llmds seem to be using it compared to plaquenil. Mepron and Zith were the best for me..
If you were real sick, it could just take time. Its a slow boat for sure. If you are keeping a chart look back 9 months and see what sx you have lost. Maybe you are making more progress than you think..
greg
Posts: 740 | From frederick,md,usa | Registered: Jun 2001
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liz28
Unregistered
posted
Try omnicef and/or minocycline, herbs with a reputation for crossing the BBB, and supplements.
Also look for other, underlying problems that could be making the Lyme worse. Mine turned out to be acid reflux and heavy metal toxicity, plus slothfulness after lying around for years, against my will, because of Lyme symptoms.
posted
Thank you for your suggestions and encouragement. Just don't want to spend more time on the same stuff if it's not working. Frankly all that I've been reading on lymenet that people are using boggles my lyme brain. Not sure when I should get 'off the beaten path.'
Will suggest Mepron and omnicef particularly.
And...will try to continue to be patient. Thanks, Cathy
Posts: 71 | From Warren, Mi, USA | Registered: May 2003
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I'd say definitely figure out if you might have some co-infections and treat those. That might make a big difference for you as it does for many who aren't finding much improvement from oral Lyme treatment alone.
Erlichia has probably been gotten rid of if you had it because the Doxy treats it. But, if you have Bartonella or Babesia you wouldn't have treated them.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
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My case is almost identical to yours, and the big turning point was when I started Mepron/Biaxin two months ago.
I had been treated for 6 months with Zith/Tini and Mino/Tini, and while the big Lyme symptoms were gone, I still had lingering brain fog and blurry vision.
In January, my LLMD switched to Tequin (a Cipro drug) and Mino, and after three weeks, I had major drenching night sweats and head pressure. The night sweats, a big Babs symptom, prompted us to retest for Babs, and it was positive, after two previous negatives. Tequin didn't get in the head well, but it was definite step forward, and Mepron has almost completely cleared the fog.
The lesson to be learned is that Babs testing shouldn't be taken too seriously, and you should definitely try at least one empirical round of Tequin or Mepron before you go to IV.
--Kris
Posts: 245 | From Palo Alto, CA USA | Registered: Jul 2003
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Get tested for mycoplasma. All strains!
Posts: 1242 | From New Jersey | Registered: Feb 2004
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