posted
I know a few are taking Tindimax right now.
Maybe we could encourage each other, and share how things are going.
It's been one month for me. I am actually seeing some improvements. The herxing has been very difficult, but I believe the benefits will be worth it.
My vision is improving, and the brain fog is staring to lift.
Posts: 175 | From Pa | Registered: Aug 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Kat,
I pulse the tindimax -- one week a month --and I'm now on about my third month.
For me, it's still dicey when I'm actually taking the tindi. I get headaches and experience pretty yucky anxiety. It can also heighten my remaining symptoms (joint pain and numbness).
Still, when that week is over, I usually seem to be really better.
For me, it's been a good thing to do and worth the week of discomfort each month.
I'm so glad you're seeing good results from it, too!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Thanks for your reply. I forgot to mention that the I am able to breath so much better because of the Tindimax. I can really get my diaphragm to expand, which is wonderful, because of this I get a really good night's sleep.
I have those emotional herxes too. Mine is more just alot of crying in the beginning. It's very strange in the beginning I was crying at the drop of a hat. I had a very hard time controlling my emotions. I read somewhere here, that this is pretty common for tindimax.
Posts: 175 | From Pa | Registered: Aug 2006
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posted
I love Tindamax. Within a week of starting it, my head started to clear up to almost normal, and my energy level increased to the point that I could actually start exercising almost daily!
I have to follow up this remark w/the fact that I'd been on other abx for almost a year when I first started it.
I took it for several months straight, but my NP took me off of it because I was approaching the length of time that they start to see permanent peripheral neuropathy from it.
My energy went straight down after that. I talked her to giving it to me again at the end of December (after I'd been off of it for several months) and within a week, I started feeling great again.
I plan to stay on it as long as possible, and hopefully "blow out" the remaining cysts in my brain (body)...at least that's my plan.
If I have to stop it again, I may start taking grapefruit seed extract. I've read some good things about it being a strong cyst buster, but questions about the processing and chemicals used in the processing.
I think my response to Tindamax would tend to indicate that the majority of my symptoms are due to the cyst form of Bb, more than the keet form.
If you haven't been on abx a long time, your Dr. may not want to put you on it right away, because if your bacteria load is still high, you can have severe herxs from it that I understand can make you feel terrible.
Herxs are no fun, but at least you know the drug is working.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm really glad tindi has been working so well for you, psano.
I also appreciated your point about the importance of timing this particular antibiotic. I was infected in 1996 but not diagnosed until June 2004. By then, my bacterial load was really high.
My LLMD opted NOT to put me on tindi right away; in fact, she waited until I'd been on other abx for over a year. As it was, my herxes were pretty hellish. I can't imagine how rough they would have been on tindi.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Okay after reading these posts and Lyme4's post about tind. I think I have to give another try. Just start out really REALLY slow.
I was like you katcon, where my legs buckled and I got so weak, I couldnt get out of bed.
Your bacteria load was probably much higher than mine because I was "only" undiagnosed for a little over a year before I started abx treatment.
I think the higher bacteria load will cause the victim to experience stronger herxes, and will take them longer to get better, i.e., requires that person to be more patient with their recovery.
As it was, I don't think I would have survived several years w/o abx treatment. The bug I have is so aggressive. It was frightening to see how quickly I declined when my abx were changed.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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Fiance will be starting Tindamax in the next couple of days--he has been on abx about a year. He's currently taking Rifampin and Minocycline, and 3 Buhner herbs (Cat's Claw, Resveratrol/Knotweed, and Smilax).
His "target" dose of Tindamax is 250 mg. 3 times a day. I'm thinking he should just start with 250 once a day, see how that goes, and work up. Thoughts???
I'm also curious to know more about the arguments for taking it continuously versus pulsing. I know if you take it too long, you run the risk of permanent peripheral neuropathy (or, as he says, "MORE peripheral neuropathy", LOL). But is it is often pulsed because it's easier to tolerate that way, or to keep the bugs off balance?
Thanks for starting this thread. Good wishes to all, Aviva
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
Just yesterday I added another pill. So now I am up to 500mg a day. I was feeling really cranky yesterday. However, this morning I got up pain free (yeah!), and feeling normal.
I really resisted this drug but I have to say I am happy with the results.
Psano I also notice that am able to focus and concentrate better than before.
Lisa S - I really believe it it worth giving it another try. I have been in treatment for 5 years during this time I was never giving a cyst buster until now, long story. I have been highly functional for the majority of this time until my relapse this summer. It was really bad. I was unable to walk, breath, my right eyelid was very weak, and I was unable to keep it open. I also had difficulty swallowing. I ended up in the hospital.
I was on iv rocephin for 8 weeks, and then Adoxa for 2 months.
Now Tindimax after my first tindimax within half an hour my legs buckled which terrified me. The next thing that happened was that I had continuous draining from my eyes and sinuses, and my throat was raw. I was not on any other abx which really concerned me. When this happened my llmd added biaxin which made me nauseous. Then we switched to Avelox, I herxed horribly on this. Intense head pain. Now I am on Cedax and responding very well.
My llmd and I believe that lyme is in my brain, ears, eyes, tear ducts - because when I herx my eyes pour tears. I realized that when I have a hugh die off I need abx that cover the sinuses.
Also I notice that Tindimax gets rid of ear inflammation for me and my jaw doesn't hurt anymore.
Lisa S what other abx are you on? I know the leg buckling is really scary, but hang in there.
Viva - I don't pulse, I take it every day. I think maybe the reason for pulsing is because the herxing can be severe, but that is just my opinion.
Posts: 175 | From Pa | Registered: Aug 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Hi Kat, glad youre feeling better@
I am also on Omnicef600mg daily and Zithromycin 500mg daily. Plus alot of supplements.
posted
Ok I spoke too soon. Today is day two of increasing my Tindimax.
Difficulty swallowing, little seizures, and right eyelid is very weak and is closing at times. And I am getting really weird pains in my head again. Pain deep deep in my ear.
These are some of my symptoms, so I am herxing again, and before this happened I felt very irritable.
I can't wait for this to be over.
Posts: 175 | From Pa | Registered: Aug 2006
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I thought Tindamax is primarily used as an anti-protoal agent? I am on it, have gotten good results from it.
I am curious, what are most of you using it for, and how does it relate to LYME? Thanks very much for your help.
Posts: 21 | From Tampa, Fl | Registered: Feb 2007
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Tindamax is used to break open the cyst form of Bb (Borrelia burgdorferi), so it IS specific for Lyme.
It may also kill the spirochete form from what I've read. But it's greatest use is as a cyst buster. Many on this board, such as myself, have shown great improvement of our Lyme symptoms w/Tindamax.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
I am about a year into treatment and have been through Ketek, Ketek + Mepron, Ketek + Mepron + Omnicef, then Omnicef + Tindimax.
I was on the last combo for 4 months and am now switching things up again.
Plaquenil, Omnicef, Zith daily and Tindimax 2 days a week.
It seems like a ton! I have tolerated meds well and hope that continues. I will start the new ones next week, my insurance takes a little while but it is better than when they weren't covering and I paid out of pocket.
It seems that with every change I have an increase in some symptoms and then all things decrease. I was really hoping to be well by now.
Most days I feel 90% but a few days a month I feel like death. I still have neuropathy and tremors in one hand, both are more sporadic.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I pulse Tindamax: 500 mg. in AM and PM, 3 days a week: was supposed to do it 4 days a week but the fatigue would hit me and knock me off my feet. Because of my stomach, I could not take it 3 times a day.
I take it with doxy - take the doxy every day, 200 mg in AM and 200 mg in PM.
Adding the Tindamax did affect my energy levels in a positive manner, excluding the times it caused exhaustion when I first started taking it, and it seems to be the one thing that squashes my vertigo symptoms: the bed no longer bobs and dips when I go to bed at night, the furniture & floor no longer move under me.
I think it cleared up my brain a bit more, as well.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
I pulse it 3 days a week...M-W-F: 500 mg.s in AM and 500 mg.s in PM. I started slowly: 250 in AM and 250 in PM for the first week; 250 in AM and 500 in PM during the second week and now it is 500 in AM and 500 in PM.
I was afraid of the herx so I eased into it. I do herx quite a bit on Tindamax. I have been on IV Rocephin for 4.5 months. It seems like I am getting better. To be honest, I cannot tell anymore.
I reached a plateau and I think I may have Babesia even though I tested negative with Igenex. I will be starting Artemisin soon and see what happens.
"Illnesses, hover constantly above us, their seed blown by the winds, but they do not set in the terrain unless the terrain is ready to receive them."---Claude Bernard. Posts: 131 | From US | Registered: Dec 2006
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posted
since I cannot take Mepron or Malarone, Dr. H., told me that the doxy-tinda combo was the best he could do for me & that it was a good combo for Lyme and babs, & plus both get into the brain.
Adding the tinda also helped with my ears when no other meds had.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
I'm concerned about this "permanent peripheral neuropathy".
What about Flagyl? Can you get that by taking Flagyl?
Tindimax vs. Flagyl, which one would be better on your system?
Currently, I'm supposed to be taking 500mg of Flagyl 3 times a day. I've been thinking about getting the doc to change it over to Tindimax.
Posts: 310 | From TN | Registered: Jan 2007
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posted
I have been on both tini and flagyl. Did not like either of them. But of the two flagyl was easier for me to tolerate. I would ramp up on the dose to where I could tolerate the reation and then hold the dose there.
In time and many many months of pulsing the flagly I found that I finally made it up to full doses. Remember this is not a race
Posts: 582 | From milwaukee wi | Registered: May 2005
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