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Posted 5/8/2018 1:44 PM (GMT 0)
Hi All,

My new LLMD has me on this schedule.

Ceftin 500mg twice a day (so 1,000 mg a day) on Monday, Tuesday, Wednesday, Thursday
Flagyl 500 mg three times a day (so 1,500 mg a day) Friday, Saturday, Sunday
Azithromax 250 mg twice a day (so 500 mg a day) Friday, Saturday, Sunday

What do you guys think?

Any opinions/advice/ suggestions are welcome.
I'm dealing with mostly neuro lyme. My most persistent symptoms are twitching, vibrations, neuropathy in right foot and tongue and intermittent swallowing weakness.

Thank you!
Posted 5/8/2018 6:58 PM (GMT 0)
my remaining symptoms are similar. I've been pulsing various combos two week ON and two week OFF for a while, but this past year I've been increasing my OFF period up to three weeks and trying four weeks off, but its tough. I'm in my last 20% of healing after 8 years in treatment

I'm not sure what your LLMD is trying to treat in this manner. I can see the short burst of Flagyl, and Ceftin schedule is like when I did IV Rocephin Tue, Wed, Th, and Fri, and Tindi pulsed Mon and Tues, with Zith, Mepron and Bactrim taken full time. But back then I was only at about 50 to 60% well. Real progress didn't happen until we hit Bart real hard.
Posted 5/8/2018 8:02 PM (GMT 0)
Flagyl is higher than what you usually see. I'm taking 500 mg twice daily two days per cycles (cycles are either 3 or 4 weeks long)

So you are taking antibiotics everyday of the week.

I am wondering if it's bartonella that you're experiencing.

Did you do a good run at treating bart?

twitching, - had those
vibrations, - had them, now I have shivers instead - not sure if that's progress...or worsening!
neuropathy in right foot and tongue and - do you have pain? or numbness? I have nerve pain
intermittent swallowing weakness. - had that. I would choke on my own spit...
Posted 5/8/2018 10:12 PM (GMT 0)
makes no sense

the whole theory of pulsing is to take a break from ALL meds to give a chance for the lyme to change from cyst form to the active form which is much easier to kill

you are taking ABX 7 days/week. The bacteria in cyst form will stay in cyst form.

I dont understand what your Doc is trying to accomplish here
Posted 5/8/2018 10:50 PM (GMT 0)

tickbite666 said...
my remaining symptoms are similar. I've been pulsing various combos two week ON and two week OFF for a while, but this past year I've been increasing my OFF period up to three weeks and trying four weeks off, but its tough. I'm in my last 20% of healing after 8 years in treatment

I'm not sure what your LLMD is trying to treat in this manner. I can see the short burst of Flagyl, and Ceftin schedule is like when I did IV Rocephin Tue, Wed, Th, and Fri, and Tindi pulsed Mon and Tues, with Zith, Mepron and Bactrim taken full time. But back then I was only at about 50 to 60% well. Real progress didn't happen until we hit Bart real hard.

Yeah, I'm not sure either. Do any of what I'm taking hit bart?
Posted 5/8/2018 10:57 PM (GMT 0)

Girlie said...
Flagyl is higher than what you usually see. I'm taking 500 mg twice daily two days per cycles (cycles are either 3 or 4 weeks long)

So you are taking antibiotics everyday of the week.

I am wondering if it's bartonella that you're experiencing.

Did you do a good run at treating bart?

twitching, - had those
vibrations, - had them, now I have shivers instead - not sure if that's progress...or worsening!
neuropathy in right foot and tongue and - do you have pain? or numbness? I have nerve pain
intermittent swallowing weakness. - had that. I would choke on my own spit...

I definitely think bartonella plays a role. I treated with my former LLMD with rifampin but this new guy doesn't like to use it as he says it's too hard on the liver.

I used to have sole pain which has resolved and a lot of other symptoms that have resolved but what I'm left with are the ones I mentioned above and fatigue (forgot that one). My neuropathy is pins and needles in tongue and right foot (sometimes thick tongue and tired tongue) and it's incredibly annoying.
Posted 5/8/2018 11:01 PM (GMT 0)

Lapis_29 said...
makes no sense

the whole theory of pulsing is to take a break from ALL meds to give a chance for the lyme to change from cyst form to the active form which is much easier to kill

you are taking ABX 7 days/week. The bacteria in cyst form will stay in cyst form.

I dont understand what your Doc is trying to accomplish here

I don't either Lapis, that's why I inquired. I haven't had the best luck with LLMDs. One undertreated, one I had to make all the suggestions and now this one with this weird schedule. If you were taking these three how would you pulse them or would you trade out one or two for something else?

Thanks in advance!
Posted 5/8/2018 11:35 PM (GMT 0)

Lapis_29 said...
makes no sense

the whole theory of pulsing is to take a break from ALL meds to give a chance for the lyme to change from cyst form to the active form which is much easier to kill

you are taking ABX 7 days/week. The bacteria in cyst form will stay in cyst form.

I dont understand what your Doc is trying to accomplish here

That’s not the only reason to pulse.
Dr J pulses based on the idea that dosing daily meds causes the immune system to shut down - the breaks allow the immune system to kick in and do the work
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