HealingWell
Search Close Search
☰

Ceftin for Neuro Lyme, effectiveness?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/28/2020 6:19 PM (GMT 0)
Hey folks. I'm currently looking to improve my condition, not cure. I can't afford all of these intense treatments right now so I'm going to order some in the next few days. I have been using the search bar as well and it seems all in all that it works pretty well. I've spoken to a few people on facebook groups as well.

How has everyone's experiences on it been? I plan on taking the remaining buhner herbs I have, which have been next to 0 effective if I'm honest. Also, the main reason for my worsening symptoms, was doxycycline! The increased intracranial pressure allowed more of the borrelia to get into my brain while using serrapeptase!

I'm gonna give 2 months worth a go, concerned about resistance and stuff as well as gut flora. I'll be supplementing with probiotics as well. I've seen on the official guidelines that 500mg x 2 daily is how things go, as well as from LLMDs. Some people go for 1000mg twice a day but that's gonna be unaffordable for me.

I know it's often taken with Flagyl. I may add that to my next order as I only had enough for a fortnights worth just now. I know that Ceftin crosses the BBB which is good, and I'm hoping my seizures will go away and I'll gain some functionality back. My seizures seem to be focal as they only happen on the right side of my body. I also have lyme meningitis and a sore neck. I honestly think I'm bart free as I've tried bactrim and it had no effect, no herx or anything.

Anyway, your input is appreciated. 😊
Posted 1/28/2020 6:30 PM (GMT 0)

Cignet.☄️ said...
Hey folks. I'm currently looking to improve my condition, not cure. I can't afford all of these intense treatments right now so I'm going to order some in the next few days. I have been using the search bar as well and it seems all in all that it works pretty well. I've spoken to a few people on facebook groups as well.

How has everyone's experiences on it been? I plan on taking the remaining buhner herbs I have, which have been next to 0 effective if I'm honest. Also, the main reason for my worsening symptoms, was doxycycline! The increased intracranial pressure allowed more of the borrelia to get into my brain while using serrapeptase!

I'm gonna give 2 months worth a go, concerned about resistance and stuff as well as gut flora. I'll be supplementing with probiotics as well. I've seen on the official guidelines that 500mg x daily is how things go, as well as from LLMDs. Some people go for 1000mg twice a day but that's gonna be unaffordable for me.

I know it's often taken with Flagyl. I may add that to my next order as I only had enough for a fortnights worth just now. I know that Ceftin crosses the BBB which is good, and I'm hoping my seizures will go away and I'll gain some functionality back. My seizures seem to be focal as they only happen on the right side of my body. I also have lyme meningitis and a sore neck. I honestly think I'm bart free as I've tried bactrim and it had no effect, no herx or anything.

Anyway, your input is appreciated. 😊

Honestly I would not do one antibiotic at a dose too low. That could lead to resistance.
I’ve not heard of any guidelines/LLMD protocols where 500 mg daily is used.
Maybe 500 twice daily?

(I do 1000 mg twice daily - but it’s pulsed with other meds)

I do hope it helps you but a couple months won’t be long enough... or will you extend it if you herx and/or improve?
Posted 1/28/2020 10:29 PM (GMT 0)
I took Ceftin with a previous LLND and I think it was 500 mg twice daily for the entire time....

With Dr. J, it's been 1000 mg twice daily from the 'get-go'. He doesn't have you 'ease' into anything....but he will 'adjust' your protocol if you're finding it too harsh.

I'm taking Tinidazole instead of Flagyl. Dr. J usually prescribes Flagyl...but I asked for Tini due to the black box warning on the flagyl. (bladder cancer in mice studies). Tinidazole - being in the same class may very well have the same risks...but at this point there isn't a black box warning on it. So, I pretend that I'm safer....lol

I take the Tinidazole for two days a month (always has been this schedule with Dr. J) So, it's on Thursday/Friday on week 1 of the 4 week protocols.

Resistance: I was just talking about it with my hubby yesterday. I better not need abx for something else in my lifetime...because I've been on several since having lyme.

I have read that because lyme is relatively slow growing (3 weeks?) that resistance is unlikely to happen. Most bacterias are replicating hourly.
Even Bart and Babs are slower. But, I still do worry now and then about resistance...

i worry a lot. smile
Posted 1/28/2020 11:15 PM (GMT 0)

Cignet.☄️ said...
I understand, I hope things have smoothed over with you and your husband btw (hope that isn't intrusive or anything.)

I mean mostly about all of these other messed up super bugs we hear about but I'm sure with time, balance will be restored. It's a tough place to be. All made worse by the fact that testing is deliberately made to be faulty.

Thanks for the heads up on the flagyl. At least they're both quite cheap. I'll try the tinidazole when I order my next round of Ceftin.

Yup - I do worry about a super bug and having taken so many different ones.
Hopefully IV abx would work in that case or by then there wouid be new/novel abx.

Not intrusive - thank you.
And yes things are going well with us - in fact we seem to be closer now than ever. Go figure!
Had some rough spots to go through first though!!
Posted 1/29/2020 2:06 PM (GMT 0)
Cignet

I've seen TindaMax prescribed in a wide variety of ways by different LLMD's. Some pulse at differ intervals and use 500mg per day or 1000 mg per dosing, or for full time for one week a month. My dose was (2) 500mg tabs 2 consecutive days/wk. Started 10/29/12 to 8/13/13. I chose Monday and Tuesday since I was also on IV Rocephin Tuesday thru Fridays along with other Rx full time. I would start with one 500 mg pill on one day then ramp up the following week. Tini was pretty strong on my gut most likely hitting parasites in the first hour after taking it. as time went on the gut reaction went away..

As far as alchohol goes, your reaction will vary and not all people have an antibuse type response. At first I would wait for two day after taking it to have a glass of wine. The I got more bold and had no adverse reaction even having a glass within an hour of taking Tini.
Posted 1/29/2020 3:55 PM (GMT 0)
I haven’t drank alcohol for 5+ years so had forgotten about that.
(Except for the time a restaurant mixed up my virgin pina colada with my friend’s double drink.)

I’ve probably used mouthwash with it at some point....
Posted 1/29/2020 5:07 PM (GMT 0)
Ceftin was a real game changer for me. I hope you see improvements on it as well. I also noticed 0 effects from regular recommended doses of herbs. I ended up taking about 3-5 times more than what the package stated to notice improvements.
Posted 1/29/2020 11:18 PM (GMT 0)

Cignet.☄️ said...
Okay no worries was worried about a disulfiram style reaction.

Thank you guys both for the input.

Girlie

One last thing, on the days that you do take the Tinidazole how much do you take and how frequently, like 2 or 3 times a day I'm guessing like 500mg or something?

I take 500 mg twice a day on two days per month.
Posted 1/30/2020 3:37 PM (GMT 0)
Hey Cignet sorry I didn't see your response until now.

I had in total about 4-5 months of Ceftin. It was my first course and was given as monotherapy. I think I took 500mg doses twice a day. After that first 30 day course, I had made great progress. I then went on to other abx with various results, and then came back to Ceftin or Ceftin + Minocycline for about 3-4 months. I went off abx and had a small flare that I knocked back with one more round of Ceftin plus Mino.

Since then I have successfully used herbs to knock back any flares. It has been quite some time since my last flare. Maybe over 1.5 years or so I'm guessing.

I typically took it on an empty stomach.

Have you started it yet?
Posted 1/30/2020 6:22 PM (GMT 0)

Cignet.☄️ said...
Missouri

No problem, that you've taken the time to respond at all is great!

I hope to start in the next 2 weeks or so. I am going to get around a 2 months long supply I imagine, maybe 3. I then intend to do as you do with the herbs to keep it at bay, I have some Japanese Knotweed and Some Cat's Claw stored up.

I'll also add in some tinidazole too. From what I've read, even Ceftin is active against the persisters (to a lesser degree than other abx.)

Thanks.

There are cysts and there are biofilms. Are you taking anything for the biofilms?
Posted 1/30/2020 6:41 PM (GMT 0)

Cignet.☄️ said...
I've read of doxy and mino. I was hoping to just get away with serrapeptase or something. I dunno. I've read that even some people have had success with just Ceftin alone.

Now I'm in dire straights but I'm sure that this will do at least something. I can probably afford maybe 3 months worth right now and then I'll have to save up until I can buy some more. Right now it's at 35% on ReliableRX so I'm making the most of this opportunity lest I sit here in agony for months while I wait for things to come to a head.

Oh I'll also use probiotics naturally. This self treating stuff is a nightmare but what else is one to do.

Thanks for the support.

For biofilms, I take xylitol and lactoferrin. The xylitol isn't too costly- I get mine either online or from our Health Food Store. Something like $10 for a package....probably lasts 4 months.... The lactoferrin - I think the last bottle I bought, it was around $35 for 60 caps.
✚ New Topic ✚ Reply