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Best antibiotics for neuro lyme?

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Posted 9/14/2015 8:49 AM (GMT -5)
Curious on everyone's opinions on best antibiotic combo for neuro lyme (numbness, buzzing, brain fog). Also, did anyone's numbness or buzzing ever go away? Thanks!
Posted 9/14/2015 9:06 AM (GMT -5)
Kyo

Everyone is different. What works for one person may not work for another.
How long have you been treating for? and what have you tried so far? Have you tried any herbals? Do you have an LLMD?

Chronic neuro sx can be treated with IV Rocephin along with other oral ABX combos. But sometimes a co-infection holds back progress vs Lyme until that it has also been treated. Its very complex.
Posted 9/14/2015 9:07 AM (GMT -5)
I started treatment the day after the tick bite and only developed 2 mild symptoms before meeting my LLMD. Therefore, I only took a combination of 2 abx before my LLMD told me to transition to an herbal protocol.

Dr. B's treatment guidelines list the various abx's that can be used and that information starts on page 13 here:

www.ilads.org/lyme/B_guidelines_12_17_08.pdf

For whatever it's worth, I usually developed numbness and buzzing as part of a herx....and it is no way near as intense as it was for me earlier in treatment.

It's reasonable to think that any symptom caused by Lyme & Co. will dissipate with proper treatment. Tickbite is 100% correct that an undiagnosed/untreated coinfection can impede healing from Lyme. That's exactly what I was dealing with and treating Babesia now is helping with my Lyme symptoms.
Posted 9/14/2015 9:15 AM (GMT -5)
I've been treating for 4 weeks with Biaxin daily, 4 days metrondinazole, 3 days plaquenil and diflucan 2x a week. Haven't experienced any major herx or improvements, but I know it takes awhile. Recently started getting a coating on my tongue and the biaxin leaves a metallic taste in mouth.

I wanted to give antibiotics a try for a couple of months, but I would love to go more herbal. It is just very overwhelming. Before I was diagnosed I took minocycline for 5 days for rosacea (which was probably caused by lyme) and the first night had a night sweat. I feel like it may be more effective in killing the bacteria?

Currently see an LLNP. She did suggest a weekly Rocephin IV on top of everything else but doesn't that seem like a lot? I hate taking all these drugs.
Posted 9/14/2015 9:28 AM (GMT -5)
Also, I tested negative on coinfections which I know Lyme rarely comes alone. My LLNP said no coinfections so we don't need to worry about those! That was kinda a red flag to me.
Posted 9/14/2015 12:00 PM (GMT -5)
I am concerned that your LLNP said no coinfections - did she base that on you testing negative? The tests are unreliable/inaccurate - my LLND doesn't even bother testing for them.
So, yes definitely a 'red flag'.

Coating on your tongue? Are you taking anything for yeast/fungal issues?
Posted 9/14/2015 12:36 PM (GMT -5)
Minocycline is a good antibiotic for crossing the blood/brain barrier. That's what I am on now.
Posted 9/14/2015 3:07 PM (GMT -5)
Mine went away.

There are certain criteria for antibiotics that will get into the brain. Generally the antibiotic has to be around 500 daltons or less. If it's a bit more it will still pass through if it is lipophilic (fat soluble).

I would say the best pics for lyme that pass through the blood brain barrier are ceftin, minocycline, Tinidazole. These pass through the best probably out of all the oral choice pics. Also Septra DS or Bactrim also passes through. Rifampin passes through, but may require a larger spike of drug in the blood to pass through. Fluroquinolones pass through the blood brain barrier almost as if it didn't even exist!

Best combo if you want to go Orals is a killer combo for Neuro lyme would be Ceftin+minocycline+tinidazole.
Posted 9/14/2015 3:30 PM (GMT -5)
Girlie - She looked at my test results and said that. I was too overwhelmed by everything to even question it. Then I don't get to see her again for 3 months. But from reading so much, I knew it was unlikely to come alone. I plan on treating for Bartonella for sure. I am conflicted on Babesia.

I actually suggested the Biaxin/Plaquenil combo to her because I have IC like symptoms as well as the neuro junk.

As for yeast, she told me to take Diflucan twice a week whenever I want. I have read on here about a nystatin powder. Need to research that a bit more and how frequently to take.
Posted 9/14/2015 3:41 PM (GMT -5)
Thank you LymePickle! I am so glad to hear that yours went away. It gives me hope!

Regarding the combo of Ceftin/Mino/Tin, would you do that every day or pulse some? I would love to come up with a cycle where I could have a break. My LLNP also suggested a Rocephin IV once a week, I just don't want to put to much stress on my body.

Thank god I love to research because this is crazy how much is left up to us!
Posted 9/14/2015 7:03 PM (GMT -5)
Np, I'm happy to share my experiences getting well.

I read lots of reports on docs who suggest IV abx aren't really even necessary at all. And I've also spoken with some people who have gotten completely well without them.

I think what happens is some people are just so sick, they just want to get well... But if you do go that route, it is highly recommended to pulse... I.e 3 or 4 days on per week, and then the rest as off days.

It is suggested by Dr. B ... That perhaps only ceftin is required to get over lyme! That is ceftin alone... pulsed 6 weeks on, 3 weeks off, 6 weeks on, 3 weeks off, and finally 6 weeks on. The dosage is 1 gram twice per day. Some LLMDs actually say this is the closest thing to IV rocephin.

Minocycline is another good one that has great brain and nerve penetration. Upto 40% of the dose can cross the blood brain barrier!!! That is very high... It is a drug that is very lipophilic, and good for when you are further into treatment.

The tini may not even be necessary and you should be aware my thinking on that medicine is that it's among the more toxic. I would definitely suggest pulsing 3 or 4 days per week when taken with ceftin or minocycline.
Posted 9/15/2015 11:53 AM (GMT -5)
Actually did some research on tini last night and I'm not going to go that route. I am going to try mino or ceftin. Yesterday I felt like my buzzing has changed some so maybe things will get a bit better. I just want a noticeable change in one symptom so I can feel confident that this is definitely Lyme and I'm on the right track.

Thanks again for sharing.
Posted 9/15/2015 12:15 PM (GMT -5)

kyo07 said...
Girlie - She looked at my test results and said that. I was too overwhelmed by everything to even question it. Then I don't get to see her again for 3 months. But from reading so much, I knew it was unlikely to come alone.

Sorry to say this Kyo07 - but a Lyme literate Dr. should know that the test results aren't reliable, and the diagnosis for the co's is clinical (unless, of course you have a positive test result) Is your LLND ILADS trained?

I am treating bartonella now...no testing done...but based on symptoms (rib pain, foot pain, swollen/sore lymph nodes, lots of nervous system involvement), along with still being very symptomatic after 9 1/2 months of treating lyme.
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