I am into my 5th month on IV Doxy and 3 months of artemisinin. My duck put me on Tindamax with instructions to start 1/4 of a 250mg pill per day. Well holy smokers!! I took it on Monday at 1pm and by 3pm I was having seizures. I didn't even know my own name. My heart raced like a thoroughbred and I threw up and had diarrhea that was like water. I guess this drug won't do it!!
I thought I would die. Truly.
I have been so depressed lately. Not like me. I have had Lyme for 30 years, 20 undiagnosed. I am only 42 and I feel like I am just not going to make it out of this round alive. My heart has been damaged, I have terrible neuropathy, on most days I can't even stop my face from twitching. It is a good day if I don't spend half of it in the bed. The fatigue is profound to say the least and both of my eyes look like someone bruised me with a bat. I take about 65 pills a day. I think I am just losing hope these days.
Usually I am always the one to be the encourager, but I just am so tired.
I see the duck on Friday next week. We are scheduled to talk about the Babs treatment. I don't know what to think.
I went back on the Artemisinin today. When I am on it for about a month, I really start to have more good days. Anyone do better on Art then the Mepron? What did you do when you *plateaued* during treatment?
Thanks in advance. I am just holding onto a branch in the rushing waters these days.
Breezy
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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posted
Tindamax is closely related to flagyl. Flagyl caused terrible depression for me! So I understand completely!!!!
Thank goodness your dr had the good sense to start you off slowly on the tindamax. Some drs give their patients a full tablet right away and don't ramp up.
That probably would have killed you!!
Why are you seeing a DUCK for your treatment? You obviously need an experienced dr to treat your Lyme and coinfections.
Hope you feel better SOON!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
doxy causes depression and also heavy bags uner the eyes...why are you on iv doxy?I am in the same boat as you...becareful of what you take...mino worked better for me then doxy but it is a hard hitter...I think I will start the mp as it is the only thing that I think will work for those of us who have had this to long... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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First let me say, I'm so sorry you went through that!!! Very scary stuff. Doxy actually gave *me* small seizures (at which point I went off it), which were very likely a herx in my case. Doxy was a huge, hard hitter for me. I actually tolerated Ketek much better, until very recently, when I have started reacting to it.
I took Artemisinin and Mepron together, along with the Ketek, and they really decreased my babs sx. However, I seem to have relapsed with babs right after discontinuing the Mepron. I know from my reading here that it is quite common for folks to do that -- either the 4 months of tx wasn't enough, or I will have to go onto clinda/quinine type treatments, I guess... I think I'll have another go at the Mepron first if the insurance will cover it, as I tolerated that really well.
What really helps one person with these illnesses can literally or figuratively kill another ---
BTW -- I've had lyme for at least 20 years, but more likely since birth (38 years). I'm pretty sure I picked the babs up in 1988, as the sx started immediately following a tickbite.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Tindamax can hit pretty hard...but such a severe reaction makes me wonder if you are allergic to it. I had the same symptoms after wearing a fentanyl patch for 5 minutes, and that obviously wasn't a herx.. but about your seizures--have you ever had a brain SPECT scan? My temporal lobe had been in a case of constant seizuring (although I only sometimes felt it), and I started seeing a neurologist, who patiently went down a list of anti-seizure meds until he hit the right one. Also, the medicine helps my headache a bit, bc my llmd believes THAT is due to the seizuring as well. Even if seizures aren't your biggest complaint, you should get that checked out if you haven't already, because solving that problem could be more beneficial than you could imagine!
I'm sorry you're in a tough spot--just try to count the few hours you can spend up and about as blessings. Hopefully you'll be able to count more and more of those blessing as time marches on. Stay strong, but if you can't, lean on the people in your life, like the people on this board, to support you! Hugs Em
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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posted
Thank you all so much for your replies. Just knowing that there are others that are suffering from the same illness as me and I am not insane helps. I just wish that NONE of us had this and that it will soon be on its way to being a terrible disease of the past.
I am sorry about putting the DUCK as I am seeing a great LLMD. I got confused about the lingo. Sorry.
I am on IV Doxy because it was the only thing in the past that really helped me get a hold on this disease. 8 years ago or so I was on it for 15 months along with Mepron and Zith. It was a winning combo for me then. But right now, my tummy has changed and I have the worst stomach motility. I just can't handle the effects of the orals as well as I can with the intravenous. I also have a very bad esophagus that is just about blown out from years of silent GERD. A fine tight rope I walk for sure.
Thank you for the encouragement and the great information. I never experienced depression on the doxy before so I am glad I now know what could be a big contributing factor in this land of blues I currently am in. I appreciate knowing where my blue bagged eyes are coming from too!
Thanks again everyone. May we all sleep peacefully tonite.
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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Cobweb
Unregistered
posted
It's a relief for me to be on Doxy- I thought it was the Mino that was going to kill me.
Have been on Ceftin now for 6 months, LLMD said she was going to change that to something else next month-hmmmm wonder what goodie she has in store?
I have heard her mention Flagyl- but nixed it at the time because it can be so harsh. We'll see.
posted
Yay! I found somebody who thinks they've had Lyme since birth! Most people, family and doctors, roll their eyes at me, but I've had a lazy eye and twitching on one side of my face since I was little. I also had OCD from way back.
I'm 41 now. I think I had Lyme since birth and maybe got some reinfections or coinfections along the way. I also believe if I did catch it as a kid, more likely it was from a flea or a mosquito.
I don't even have my picc line in yet, but your story made me scared! Be careful!
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm really sorry you're going through such a tough time.
I developed seizures after being on ceftin for about 6 months. At that point, my LLMD put me on rifampin (for bart), and within several weeks, the seizures had completely stopped and have never returned.
Not saying it was the rifampin that caused the ceasation, but that would be my thought.
I didn't start tindi until I'd been on abx for about a year. At that point, like you, I ramped up very slowly. I got depressed but nothing too outrageously severe. I also got a wicked headache that nothing seemed to touch.
I'm pulsing the tindi, and with each round, the side-effects lessen.
One of the problems I have in assessing all this is that, for me, it's hard to know all the time what causes (or stops) what. I'm on so much different stuff it can be hard to tell.
All I do know is that I'm getting slowly, progressively better.
I hope you're able to find some relief!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Tindamax may cause seizures and peripheral neuropathy (numbness and tingling in the hands and feet). Stop taking Tindamax and see your doctor right away if you have these symptoms.
My son took tinidazole years ago when he first got sick. I remember that we had to ramp up slowly and also be aware that depression could occur. Does anyone remember if it there were antibiotics that did not go with tinidazole? I cannot remember that far back.
Posts: 758 | From now TX | Registered: Mar 2001
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