I am about to begin treatment next week for Lyme/Bartonella as diagnosed by my LLMD.
ALL of my current symptoms are neuro (upper/lower extremity neuropathy, right ear tinnitus, insomnia, stiff/cracking neck, very minor brain fog)...these sx's have persisted for last 1.5 years following several years of more benign and vague sx's that were related. NO treatment to this point!
There has been NO discussion with my LLMD about treating the suspected Bart first? I know MANY here all talk about treating co-infections first?
Here's my treatment plan:
1) 6 weeks of IV Rocephin (4 days per week/4 Grams daily) 2) 1500 MG daily of Flagyl beginning on 2nd week for 2 weeks, 1 week break, 2 more weeks (this seems like a large dose, opinions?) 3) 1000 MG daily of Azithromycin on for ONE week on the fifth week.
Has anyone else used a similar protocol for neuro sx's? Do these drugs seem appropriate for Bart too, or just the Lyme? I want to get this right from the start!
My doctor seems to have a good reputation and seemed perceptive to sx's during consultation. Don't want to second-guess anyone, but want to be sure this seems appropriate and thought who better to ask than those with similar sx's and the Lyme/Bart combo of diagnoses...
Deep appreciation for any help/opinions, MBB3 Posts: 247 | From The Country | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
My LLMD thinks Flagyl hits bartonella, all of them hit Lyme. Are you seeing Dr JS in FL?
Posts: 3528 | From US | Registered: Apr 2007
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daise
Unregistered
posted
Hi Mbb3,
We're all different!
Treating coinfections first is not a rule. It depends on what our individual needs are.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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daise
Unregistered
posted
Hi Tracy!
Click "italics" below. Type your word or sentence into the box that pops-up. Then click whatever it says in the box, in the upper right.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey M...
So sorry you were soooooooo long without treatment and had so many kicks from the infections. Ouch ouch!
I am NOT a good one to say how much the doses should be as any one of those doses would knock me flat on my ... hmmmmm... HEAD!
It is a strong dose though for the Rocephin and Zithromax from what I am use to seeing. I did one gram Rocephin a day.. then two at a later time.. and thought I would croak from it all. But back then I had been years with no treatment and we didn't know what a herx was. BUT.. afterward I was able to go back to work and felt better. But do note.. it may be a delayed recovery... and you may feel NO better when done with the meds.
Then.. you may have a 1/2 day where you feel better.. followed by 2 bad days again. Then suddenly another day and maybe 2 of feeling good.. then BAM.. back down again.
IF this happens do NOT get discouraged!!! It happens quite often. But the 1/2 day of finally feeling good is smashed when the bad returns because you get scared THAT was it.. and you will never get better!
But you will!
I believe that stuff happening was the most depressing thing for me. to finally reach a taste of good... only to go back bad again! Uggggg!!!! NOT fair.
The Zith I've seen taken in 250 mg... 1-2 times a day.. and up to 600 mg a day. I've not seen 1,000 mg a day. But I am not familiar with all the newer protocols.
I can't comment on the Flagyl as I won't even try that one! I am super sissy baby.. and don't risk that tuff of a drug.. but that is just ME!
May I suggest?
Be prepared to be doing little during treatment. Stock up on food... get someone to help at the house.. and get things ready to do some easy projects.. like put pictures in an album.. or paint your toenails all different colors.
You can even.. and should really get a 10 pound sack of potatoes to have on hand also. On days you feel bad they are real handy.
You take them out of the bag... one at a time... and look at them closely. then name the potato and set it aside.
Once you've done that with all the potatoes.. put them all back in the bag in no special order... watch tv for a while.. then go back and take them out one by one.. and see if you can remeber their names.
Yes.. I was sick a LONG time. Couldn't do much. Between the potato friends... who are really easy to care for cause they don't eat much or mess on the floor... or bark...
And finding other activities to do... I trained my gold fish to sit around a little table set with tiny dishes and tiny coke bottles and hover over tiny chairs while they ate.
I stuffed little pieces of the dried shrimp blocks in the top of the coke bottles.. and mashed them on the tiny plates.. and the fish would eat the shrimp.. which wasn't very visable.. so it looked like they hovered over the table eating off the plates...
And they were drinking coke from the bottles. Sooooo cute!
Luckily I got better before I had to teach them to use a fork and knife!
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