Just wondering what sort of IV protocols people have done *effectively* to counter all three if at least 2 of the 3 (probably all 3) are neurological, and over how many months/years?
It doesn't seem like IV Rifampin (for neuro bart) comes up much, so I'm particularly curious about experiences with that.
Posted by Maia_Azure (Member # 44330) on :
Lyme: IV ceftriaxone, IV zithromax, IV Flagly (for cyst busting).
Babesia: oral zithromax, mepron, beyond balance MC-Bab 2 drops, 7 months later switched to Cyptolepsis as still have infection.
I am also going on Ceftin soon. Not sure if the lyme is "gone" so I am still on byron white and other drops.
I only have suspected Bart, so I am also taking the byron white drops for that. MC-BAR I think it is?
Posted by lymielauren28 (Member # 13742) on :
I'm on IV Clindamycin, IV Zith, double doses Mepron. Artemsinin and minocycline. Next month I add cipro and keep all the above except the clindy. If I make it. This protocol is brutal.
Posted by seibertneurolyme (Member # 6416) on :
The 5 drug oral combo hubby took to address all 3 infections was - Bactrim, alinia, Zithromax, minocycline and rifampin.
Then he dropped the mino and added flagyl and ended up in the ER.
It was helpful, but doses were too low to eradicate any infection.
I think it is going to be very hard to tolerate therapeutic doses of any med combo that covers all 3 infections concurrently. I would probably pick the 2 worst and treat them for 3 - 4 months and then switch up.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by LymeCFIDSMCS (Member # 13573) on :
Thanks so much, everyone. LymieLauren, can I ask what has been particularly brutal about the protocol (like adding one of those in particular or all in combo?) -- and how long you've been at it? (it *sounds* brutal, don't get me wrong!).
Bea, I can't remember if your hubby did IVs and for how long as I know he was doing everything. Also, I got horrible peripheral neuropathy from Flagyl -- I'm curious was it the Flagyl itself that landed him in the ER?
And Maia, have you seen improvement on the meds and how long did it take?
Posted by seibertneurolyme (Member # 6416) on :
Hubby did 2 months of IV Rocephin in 2003 then only orals for the next 6 or 7 years. After the oral protocol listed above failed he did 3 months of IV rocephin (or maybe it was 6 months - but he also added IV zith for the last 2 months and was on oral flagyl the entire 3 or 6 months I think.
And then he treated the babesia with IV clindamycin and oral quinine plus malarone at the start of his 14 months of aggressive babs treatment.
We always thought it was the combination of stopping the minocycline and adding the flagyl with no other lyme meds on board that caused the ER visit. That was the first time he had been on a cyst buster in 8 or so years. Later he took oral flagyl with no problems while he was on either mino or doxy at the same time.
During the babs treatment IV flagyl landed him in the ER a couple of times - the IV seemed 10 times stronger than oral flagyl even though he had taken the oral for many months.
Bea Seibert
Posted by TellicoRiver (Member # 45846) on :
Sounds like he is allergic to Flagyl. Tinidazole breaks up the round body cyst form too.