Well, the good news is that I was able to go a whole year w/out meds this time around! The not so good news is that I started back 2 weeks ago and am feeling rather rotten.
I've restarted with Doxy, Zith and just added Tindamax tonight. Next week, after a short pulse break, I want to add in Bicillin again. That is if I can find someone to shoot me. (I tried shooting myself for awhile, but didn't do so well with it.)
Anyway... I suppose my question for tonight is re: Tindamax dosing. And yes, I do realize that dosing is individualized, so I'm just asking about a 'norm' here. (I moved since my last intensive treatment and have lost my notes)
So, is the norm 500MG TID like Flagyl?
Thanks so much in advance, Melanie
Posted by karenl (Member # 17753) on :
My compounded tinidazole is 500 mg and only one capsule daily.
Posted by micul (Member # 6314) on :
Hi Mel. Actually it has a longer half life than Flagyl, so you only take it bid. 500 is good, some take 1000 bid......Colorado eh? Isn't that where you started out at?
Posted by seekhelp (Member # 15067) on :
Damn, everyone seems to fall off the train with this illness. So unfair. At least you had a year of good health. This board is so hard to read at times and stay in any decent spirits.
Posted by Melanie Reber (Member # 3707) on :
Thank you for the input Micul and Karen... perhaps I will stay with a lower dose for now. Micul, yes, Colorado is where I started out at.
Seek, you're right... it isn't fair, but please try not to get discouraged. Everyone has their own journey with these diseases, mine has just been particularly lengthy. However, I am SO MUCH better than I was at the beginning!
Posted by Carol in PA (Member # 5338) on :
Hi Melanie!
I don't have any antibiotic advice for you, but if you want, I can nag you about supplements, haha.
Carol
Posted by Melanie Reber (Member # 3707) on :
Hey Miss Carol! You are welcome to nag me as much as you like at anytime! Miss you!
Posted by Abxnomore (Member # 18936) on :
When I was sick I took 500 mg of compounded tinidazole 3x a day.
Posted by Sammi (Member # 110) on :
Melanie, I am sorry you had to go back on meds but it is great you had a year without them.
I think I took compunded Tinidazole two times a day, but it was a long time ago so I am not sure.
I am glad you have a plan in place. I hope your treatment goes well!
Posted by Melanie Reber (Member # 3707) on :
Thanks Abx and Sammi! I have started with 500 every night this week and will increase over time. I'm trying to do this as gently as possible this go round. That may be an impossibility, but thats the plan.
Posted by Lymetoo (Member # 743) on :
Hey, Mel!! Welcome back .. NOT that we want you to have to be here! Yuck!
All I can say is listen to your body. I don't think I ever made it past 750mg a day .. IF that.
Hope you can knock this out quickly!!
Posted by Melanie Reber (Member # 3707) on :
Hey there Miss Tootsie-Pop! I think that is very good advice and I am trying to do just that!
Much love to you, M
Posted by TnFlowerChild (Member # 24717) on :
I've been getting the Bicillin shots for the last few months... do they ever get to where they don't hurt like the devil????
Or is it just my tender hinie?
Sorry you're back with us - but I guess we have/are "good company"?
Posted by Melanie Reber (Member # 3707) on :
Hey there Flower... Bicillin is very tempermental with me too. Some shots are rather painless, but others hurt horribly and leave large bruises.
Numbing, positionaing, heating afterwards and the person administering the shot can make a difference, but not always. Hope you find a way to ease the pain soon.
And yes, I have always loved the good company here, thank you.
Posted by gambler (Member # 8441) on :
I was just wondering the other day what happened to you and figured you were all better (I don't post that much, but I read them).
That's a bummer. I'm sorry.
Posted by Lymeorsomething (Member # 16359) on :
According to the abstract I've seen from the new UNH study, tini looks to be one of the more effective lyme drugs.
I'm not even sure the diversity of meds is required as long as you're covering all lyme forms.
If you're treating just lyme, consider high dose amoxy with your tini and maybe something to target biofilms...
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Lymeorsomething: ...and maybe something to target biofilms...
That would be systemic enzymes.
How Systemic Enzymes Work to Cure Diseases By Dr. James Howenstine, MD March 17, 2009 NewsWithViews.com
Thank you Gambler. Lymeor, I am no longer able to tolerate Amoxi, unfortunately, but do very well with Bicillin. Carol, thank you for the enzyme link!
Posted by lymeinhell (Member # 4622) on :
Miss Melanie!!! Welcome back!!
Sorry to hear you're back on abx but I'm sure you'll be back to your rosey self in no time! Posted by Melanie Reber (Member # 3707) on :
Thank you Julie!
Posted by kelmo (Member # 8797) on :
Welcome Back Melanie. My daughter relapsed, too. Discouraging.
Posted by jess22 (Member # 26641) on :
@ Melanie-Nice to meet you, sorry it had to be this way! Just think if your body could do it for a year I'm sure you'll be back on track again..
Let me say I love this board. Everyone is SO supportive and there's always great information here. But there is also some negativity..
I realize we are all sick. Melanie didn't state what her level of function was. Not everyone who relapses ends up bedridden or unable to look after themselves. Why the doom and gloom??
I don't mean to point fingers. Just that for those of us whom the going is so tough I think I like to stay positive ...
Posted by unsure445 (Member # 15962) on :
I hope it is a quick rebound back to balanced health!
If you don't mind my asking, were you on any maintenance herbs in the last year after you stopped antibiotics?
Posted by Melanie Reber (Member # 3707) on :
I'm so sorry to hear that Kelmo. I know how dissapointing it is. Best to her and to you.
Hey Jess, I can't speak for others... but for me at least, any little step backward is difficult after a long battle. So, I feel as if the others here are simply relating to that and validating the struggle. It is important, however to stay positive, so good for you!
Thanks Unsure. Actually, when I stopped meds the last time, I basically stopped evrything. So, no, I didn't continue with any herbs, supps, etc.
Posted by map1131 (Member # 2022) on :
I'm so sorry to see you're back. A year of being well would be so incredible. Give thanks for that and just come back fighting those nasty nasty bugs.
Pam
Posted by Melanie Reber (Member # 3707) on :
Thanks Pam. I know it has been a very long battle for you as well and believe me... I am very grateful for my improved health. It was amazing to be able to live a somewhat 'normal' life for as long as I have.
When I relapsed a few years ago, my LLMD told me that this may be my path to recovery... a year or so off and a year or so on when needed. Hopefully, the off periods will continue to increase with time.
Miss Carol,I found a large bottle of Wobenzymes in my old med stash. Will you share with me the dosing protocol, please?
Posted by Carol in PA (Member # 5338) on :
Melanie, you can follow the directions on the bottle and see how you do.
I had good results using a higher dose.
Posted by Robin123 (Member # 9197) on :
Hi Melanie - sorry to see you back here re meds - you were doing so well, I thought - guess we have to be glad for any relief time we get.
Wanted to let you know we testified in SF again this week for the May month recognition. You were great two years ago testifying here.
The supervisor this time - a new one - said, "Continuing our annual tradition..." as she entered the resolution into the record. Yes! - "annual tradition" is music to my ears and you've been a part of it!
Posted by Melanie Reber (Member # 3707) on :
Well, just when I was on a roll... a really bad cold snuck in and messed up all my plans! So, I guess I will extend my '4th week off' for another week and then start over again.
Thanks Miss Carol. The directions just seemed like a lot of pills in a day, so I was just checking.
Hey Robin! I'm SO proud of you for continuing to make such an impact in SF and also so grateful that I was able to be a small part of it. I miss my City by the Bay!
Posted by map1131 (Member # 2022) on :
Melanie, the cold is just a bump in the road dear. Kick some virus arse and get back on track.
I know you'll get there again.
Pam
Posted by Julie-MA (Member # 5110) on :
I am back on too, Melanie, after 2+ years without. Very discouraging, but I do feel better almost immediately after several months of neuro symptoms returning.
I don't have any advice about your meds (I am seeing a new LLMD and am on Ceftin, Zithro and Plaquenil, instead of Biaxin and Plaquenil for several years last time), but wanted to chime in that I can empathize. :-(
Most of all, I am cranky about returning to the restricted diet.
Julie
Posted by Geneal (Member # 10375) on :
Hi Melanie!!!!
I wondered how you were.
Don't worry. You will get back into remission soon.
I was in remission for over a year before another tick bite with symptoms.
Treated 3 months. Bit again.
Treated 3 months again.
Been off of all meds including diflucan for over 3 months now.
Just know that you've done it before and you can do it again.
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So unfair. At least you had a year of good health. This board is so hard to read at times and stay in any decent spirits.
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