I was hoping that some of you could answer the questions below about Flagyl (or Tindamax):
1. How soon into your treatment plan did you start one of these ABX?
2. Do you pulse it? or Do you take it everyday for a certain time period?
3. Do you stay on this ABX as long as your other ABX's?
Just want to see what others have done/are doing since many docs give different instructions about the meds. I know many of you have great Lyme docs, so any info would be much appreciated.
Thanks, Jill
[ 24. July 2006, 10:05 PM: Message edited by: tortiecat ]
Posted by trueblue (Member # 7348) on :
Hi Jill, I'm sending this to the top because I don't really know the answers but think it can be pulsed or taken daily for a certain period.
ok, that wasn't any help at all... hopefully someone with an actual brain will happen long soon. Posted by LYMESCIENCE (Member # 9259) on :
This is an important question and no doubt many others here have differing views.
I prefer Tindamax because it has fewer side effects and its potency per mg is much greater than Flagly based on studies.
Personally, I pulse this med in such a way as to attempt to get the most out of its use.
I generally use Tindamax after a course of a Beta-Lactam antibiotic(studies show that these antibiotics cause a large increase in cyst formation)
I also try to go for combination effects when pulsing.
For example, I generally include a Macrolide (they don't create many cysts as compared to other antibiotics), there is some evidence that Macrolides such as Zithromax, Biaxin, or Ketek have some effect against Bartonella, and some authorities have suggested that the combo of a Macrolide and a drug like flagly or tindamax is effective against Babesia.
Also, I use at least two drugs at the same time with activity against the cystic form of Lyme, so I like to add 200 mg of Plaquenil which is also theorized to increase the ability of Macrolides against Borrelia, and really, any other susecptable bacteria that reside in an unfavorable PH to Macrolides.
I also include one Septra DS for Bartonella and possibly to help with Babesia, and 3 pills of Malarone for Babesia. Lastly, I finish with one dose of Levaquin IV. I find that with this regamine, though perhaps a lot, I end up hitting the Lyme complex in several different ways for the several different organisms proven to be involved in chronic Lyme Disease. By doing this, I find success though I can only tolerate this regamine for 4 days at a time.
I hope some of the links provided help you get a better understanding of the Lyme cyst.
Posted by tortiecat (Member # 9357) on :
Thank you to trueblue and LymeScience! I am newbie just trying to understand the disease and the medicines. Learning alot from this board everyday! I do use the Search feature also, but thought I would get most current info by posting the questions.
Many Thanks, Jill
Posted by Michelle M (Member # 7200) on :
Hi Tortie!
Here's a link to a thread I recall pretty recently.
We all did some pretty serious whining about Flagyl experiences! It's pretty much of a collective OUCH!! But in a good way, unfortunately.
I never got an opportunity to "pulse." I'da jumped on it! I made it to six weeks. Phew. (wipes sweat from brow.)
Mine was added at six months.
LLMD's practices about these meds change quite often as new research and thinking presents itself. So, even digging up old threads isn't always as good as what people are doing RIGHT NOW.
Hopefully some current Flagyl people (assuming they're not all herxing their brains out) will pipe in with their .02!!
My LLMD started me on Flagyll as soon as I was diagnosed (June 2006). I pulse it with Minocycline though. I take 1 week of Flagyll and then 3 weeks of Mino. I am only on my 2nd round of Flagyll, but last time it kicked my butt. I had terrible herx, including arthritis so bad I could not get out of bed, but as they say, "no pain, no gain" right?
Good luck with your treatment!!
Posted by Virginia of Yore (Member # 3269) on :
1. How soon into your treatment plan did you start one of these ABX?
I got doxy, then amoxicillin, then finally IV Rocephin for 2 mo., starting a week after my tickbite, and I just worsened or relapsed till on a combination protocol of 3 abx that attacked the Bb cyst forms, intracellular and outer cellur forms of Bb (lyme). (I have used various combos of zithromax, biaxin, ketek, clindamycin, levaquin, plaquenil, etc.) I started flagyl several months after the bite and took it for 7 months, taking it in combination with zithromax and suprax (older drug similar to omnicef, no longer available.) The flagyl drug caused persistent peripheral neuropathy in my toes (stabbing pain and constant numbness, not waxing/waning like with lyme) which took several years to fade after off flagyl. The toes still are strangely hypersensitive or slightly numb at times, not totally normal even 6 years later. I would definitely not take flagyl longer than three months max. (If pulsing it, maybe longer, but only if no periph. neuropathy.)
Once we found a source for Tinidazole (hand compounded capsules), I began taking it (later got Tindamax brand), and have been on it for several years without getting that numbness problem flagyl caused.
2. Do you pulse it? or Do you take it everyday for a certain time period?
I take the tini twice daily, two in the AM, one at night, every day, along with two other abx. (Currently using minocycline and omnicef with it, and have few symptoms left.)
3. Do you stay on this ABX as long as your other ABX's?
I have, because if you don't keep a cyst fighter in there in the mix, you will most likely have the other abx drive them into the cyst form, which can then hatch out more spirochetes later when they think they can survive. Since one cyst has been photographed hatching out 5 spirochetes (see Norwegian Brorsons' research), you could well just be multiplying the problem by letting them get into that form unnecessarily.
Posted by tortiecat (Member # 9357) on :
Wow! Thank you AmyInMi and Virginia of Yore for the very helpful info!! This is exactly the kind of info this newbie needs.
Many thanks, Jill
Posted by Jillybean (Member # 8071) on :
Hi Jill,
I was diagnosed with Chronic Lyme and put on IV Rocephin and 1500 mg Flagyl daily for almost 4 months. I developed peripheral neuropathy in my feet, and was pulled off all abx immediately. It has been almost 4 months, I still have the P.N, and have no idea if I still have Lyme. When this happened my LLMD dropped me in a Neuro's lap. He can't find Lyme (not Lyme Literate anyway), and now sending me for a neuro-psych consult for my memory loss and constant numbness in my face.
I would suggest that you be very careful with the Flagyl. Google it. It has many side affects, I only wish I'd have paid more attention to them. Best of luck. Another Jill (from Florida also!)
Posted by Virginia of Yore (Member # 3269) on :
Jillybean, my flagyl-induced toe stabs & numbness has largely improved, but it has taken several years to do so. (I had 7 mo. oral flagyl. Now on long-term Tindamax, and not getting the same p. neuro problems.) Nerves are quite slow to regrow, and don't always grow back normally even if they do with lyme. Monkey nerve experiments with lyme have shown this. So be sure you get enough B vitamins, Omega-3 fats (eg. a pure fish oil) both important for nerves & sheath coverings, and be patient. Also do what you can to de-tox and aid your circulation. Due to poorer circulation, feet can be where various toxins lodge, causing problems.
Posted by tortiecat (Member # 9357) on :
Thanks for the new replies from Jill and Virginia. I think I've now seen at least 3 different Jill's on this site, myself included. I am still researching everything and it's alot to process, but the more info, the better.
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