posted
In May I was diagnosed with acute Lyme with CNS involvement, along with Ehrlichia and Bartonella. I have been infusing Rocephin for 4 months and have tried various abx. Currently pulsing Tinidazole every 2 weeks, and taking Levaquin and Doxy daily for the co-infections. I am doing (and taking) everything I can think of to get rid of this stuff, but am not seeing much improvement in my health, and the burning/tingling in my feet & hands rages on. I'm losing hope. Is it too soon to expect major results? Any suggestions?
Posts: 5 | From Utah | Registered: Nov 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I see by your abx regiem that you have a llmd...or at least a doctor that understands this disease...
If I were you I would get some probiotics and possibly some kind of anti-toxin treatments to rid yourself of possible yeast and toxins...
No one can say how long an individual has to remain on any particular regimen...it takes as long as it takes...and has more to do with how long you have been infected.
Some of the tingling may be due to the tinidazoleand some of the tendon pain you may be experiencing may be due to the levaquin...
I would stay the course...maybe ask for zithromax or Ketek....oral meds....
Hang in there........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by Tiff: In May I was diagnosed with acute Lyme with CNS involvement, along with Ehrlichia and Bartonella. I have been infusing Rocephin for 4 months and have tried various abx. Currently pulsing Tinidazole every 2 weeks, and taking Levaquin and Doxy daily for the co-infections. I am doing (and taking) everything I can think of to get rid of this stuff, but am not seeing much improvement in my health, and the burning/tingling in my feet & hands rages on. I'm losing hope. Is it too soon to expect major results? Any suggestions?
Wow, you've got all the bases covered ! Even acute lyme can take some time before you see improvement.
You mentioned 4 months of IV rocephin. My son did 3 months of IV rocephin with little or no improvement. We then switched to IV zithromax and he improved greatly in a few short weeks. Some people do not respond well to rocephin.
Secondly, how much levaquin, doxy, tini, are you currently taking. The dosage needs to be adequate enough to actually do some good.
The combo your on is treating everything at once. Perhaps, your better off, treating one co-infection, eradicating that, then moving on to the other. The first would have to be erlichiosis as this is the most dangerous.
Doxy at a level of 400mg-600mg per-day should knock it out. You can do it through the IV to save your GI tract. Levaquin and zith would knock out the bart.
The tini and IV zith would clear up any cyst form of Bb. I'd stay on the IV as long as possible, until symptom free, saves the stomach from yeast infections. Of course, check with your doc before proceeding with any change in regimen.
The regimen your currently on should work in time. However, I may ask the doc to change the IV rocephin, to IV zithromax and see if you don't start improving.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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I have seen a couple of people that have tried everything respond well to Hyperbaric oxygen. Look into it, the increased oxygen facilitates the obsorption of the antibiotics and increasing the effectiveness.
It worked great for me and my husband. It is best done while you are on antibiotics as they work together. If you are interested I can send you some links where you can read up on the therapy.
Best Regards,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
Thanks so much to all those who replied to my post. It's nice to know I have friends in far away places who understand this disease! I am currently taking 3 probiotic capsules (Metagenics), 750 mg. Tinidazole, 400 mg. Doxy, and 500 mg. Levaquin. I started the Levaquin this week, and also take 200 mg Diflucan every four days. Have been taking Doxy for almost two months. My LLMD says I should take Doxy for at least two mos. to erradicate Ehrlichia. Anyone have more info. on timeline to kill co-infections? I've had Lyme/co-infections for at least six years, but went undiagnosed until this year. Thanks again for your help--I really appreciate it!
Posts: 5 | From Utah | Registered: Nov 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I thought that sounded very agressive also. We're just doing them one antibiotic at a time, as the LLMD outlined. Seems it could be a long process.
Also, I'm thinking the Nystatin taken twice a day may may work better for my hubby. Any thoughts on that?
quote:Originally posted by NP40:
quote:Originally posted by Tiff: In May I was diagnosed with acute Lyme with CNS involvement, along with Ehrlichia and Bartonella. I have been infusing Rocephin for 4 months and have tried various abx. Currently pulsing Tinidazole every 2 weeks, and taking Levaquin and Doxy daily for the co-infections. I am doing (and taking) everything I can think of to get rid of this stuff, but am not seeing much improvement in my health, and the burning/tingling in my feet & hands rages on. I'm losing hope. Is it too soon to expect major results? Any suggestions?
Wow, you've got all the bases covered ! Even acute lyme can take some time before you see improvement.
You mentioned 4 months of IV rocephin. My son did 3 months of IV rocephin with little or no improvement. We then switched to IV zithromax and he improved greatly in a few short weeks. Some people do not respond well to rocephin.
Secondly, how much levaquin, doxy, tini, are you currently taking. The dosage needs to be adequate enough to actually do some good.
The combo your on is treating everything at once. Perhaps, your better off, treating one co-infection, eradicating that, then moving on to the other. The first would have to be erlichiosis as this is the most dangerous.
Doxy at a level of 400mg-600mg per-day should knock it out. You can do it through the IV to save your GI tract. Levaquin and zith would knock out the bart.
The tini and IV zith would clear up any cyst form of Bb. I'd stay on the IV as long as possible, until symptom free, saves the stomach from yeast infections. Of course, check with your doc before proceeding with any change in regimen.
The regimen your currently on should work in time. However, I may ask the doc to change the IV rocephin, to IV zithromax and see if you don't start improving.
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Your dosage is certainly adequate. Given the amount of time you've been ill it may take several months before you notice any improvement. Don't be discouraged, eventually you'll gain relief.
Lymetoo, agreed on the IV/yeast thing. However, I think people are more susceptible to stomach/GI yeast on orals rather than IV's. In hindsight, I wish that we would have kept my son on IV for an extra month or two compared to the many months of orals.
He does have a yeast infection now, and he's currently taking diflucan to eradicate it, along with a host of supps. So far, no lyme symptoms have reappeared.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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