I was wondering about my current pulsing protocol, and if it is possibly not working as expected...

I began a new protocol three weeks ago of Mino 200mg, Bactrim, Flagyl 1000mg, Diamox 250mg, and K-tabs.

The plan was to pulse for one week on and then one week off...adding Flagyl into the mix on the third week only.

I believe that my doc was thinking that he could begin to wean me off of ABX if I felt well with this plan.

The problem however, is that I have felt worse. Even though I have been on these meds in the past, it wasn't this level of ``ouch''.

So, I am trying to draw a few conclusions as to why.

The first obviously, is that I am not quite ready to stop treatment.
The second, I think, is that the meds are working at killing something.

And the third...and this is where I could use some input...
Is that I think the pulsing plan is killing for one week, and then allowing the bugs to come out on the second week, and then killing again on the third week, and so on...basically...a constant herx effect with only one or two days of relief during the off weeks.

Now, I can put up with the almost constant awful feeling for awhile...but, I'm not really too sure if it is actually better to be killing consistently like this, or worse for me in the long run as far as treatment resistance?

I am going into my local doc today with these questions...but I wanted to know what your thoughts were first.

Any input would be appreciated!
Thanks in advance,
Melanie

The lyme supposedly reproduces slow, so I think it wouldn't have time in the week off. I'm guessing you're killing off other keets that were unavailable last time around.

I don't know what the time for new bugs to grow is for the other things that are being treated though. I wish I had some better input.

However, this protocol sounds really tough on you and I'm concerned about adding flagyl next week. It may make a bunch of hidden keets available but will you be able to handle the herx. Afterward you may feel much better but you'd have to get through it.

I couldn't even venture a guess on resistance.

I agree as to the replication time for Bb...but just read recently here that Bart has a quicker replication cycle. Although I wasn't able to find any literature on that.

So, I don't think it is killing off new bacteria per se, but possibly killing what it can and also sending some into tissue during the on week, and then attacking again when they come back out the next week.

Sorry, that didn't make too much sense...hope you can decipher ``Melanie''.

Anyway- yes, I am officially miserable...(that doesn't happen very often), and am trying to sort this out. And no, I don't think adding flagyl into the mix right now is a very good idea either.

Thanks kiddo- hope you are hanging in there.

quote:

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Originally posted by Melanie Reber:
So, I don't think it is killing off new bacteria per se, but possibly killing what it can and also sending some into tissue during the on week, and then attacking again when they come back out the next week.

Sorry, that didn't make too much sense...hope you can decipher ``Melanie''.

Thanks kiddo- hope you are hanging in there.

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I didn't know what the replication time was for bart either, that's what I was wondering.

I'm hanging in fine. I skipped the doxy last night and am starting zithro this afternoon so had a few hours without the brain exploding phenomenon. Yay!

Shiver me timbers Olive Oil... this doesn't sound too good!

"I think you need some spinach Popeye."

Oh NO.. NOT TINCUP!

Ahhhhhhhhhhhhhhhhh!!!!!!!!!

A few thoughts come to mind...

I'd have more if I weren't to the point that I was doing stuff like heading to the kitchen pantry when I was looking for my hair ribbons.. and wasn't finding myself standing in the bathroom when I really meant to go outside to get something from my truck.

1. Me sees a bit of stress in this picture. I KNOW.. not as much as some other times in yer life perhaps.. but DIFFERENT stress. This is BOUND to kick your tail feathers a bit.

Now she is thinking.... oh SHUSH Tincup... that ain't it!!! I'm SICK!

Ok... hard head.

2. Pretend you are a foot ball stadium. NO- WAIT. A BASEBALL stadium.. I like them better.

For one week you try your best to fill the stadium up with water.

The next week.. while your out and about smelling roses.. the stadium drains.

The next week.. there you are.. filling the stadium up again.

But alas... the following week it drains out AGAIN.

My THOUGHT is-

That is what Dr. Smiley is doing here.

One week kill, kill, kill.

The next week drain, drain, drain.

But I COULD be wrong?

BUT...

EITHER WAY Buttercup.. the plan is just something that isn't working for you.

Here's a quarter... call someone who cares.

LIKE YOUR DOCTOR!!!

OK.. SORRY!

JUST worried about you and it makes me NUTS!

Anyhow... back to the stadium. Yes.. take me out to the ball game.

Perhaps too many buckets of water the first week?

Coupled with a slow drain the second?

What?

Don't like that answer either?

OK... 1/2 pint. Let's try THIS on for size.

3. Medicine sick?

EVENTUALLY the body is NOT going to be able to handle these HEAVY doses of antibiotics and it will start to fight back.

Since your symptom list consisted of only, "constant feeling of awful".. we really don't have much to go on ... do we?

Dipstick.

~smile~

But THAT is pretty much how I describe myself when I am "medicine sick"... which.. by the way.. stress makes even worse.

NOW..

I will spare you the "B" word... ONLY cause you feel like a frog on a 4 lane highway right now... but remember.. once the other JUNK is killed or the load is lessened.. new infections tend to pop up that we didn't even know we had.

One final thought.. then I will leave you alone.

Well, no I won't... but you CAN hope!

If you put some food in your mouth that is REALLY hot and it burns you...

Common sense says NOT to do THAT again.

Thinking about you mountain girl.

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If you get the choice to sit it out or dance...

I purchased a video from www.lymepa.org of Dr J B , April 04.

He spoke of pulsing IV abx 5 days on, 2 off.

And, I'm beginning to agree that pulsing of orals is for much later in tx, close to the end.

So sorry I didnt see this til now, hope you get this.

First i agree with TC (shh don't tell her), you are under incredible physical and 'emotional' stress right now, so I doubt any protocol would do much good for you (IMHO).

Second, the heat is so bad there that it makes it so much worse giving your body no chance for recuperation (oh that and the fact that I'm sure you aren't letting it recuperate which is purely a guess).

As far as the pulsing, well Dr. Smiley as TC likes to call him seems to have a method for his madness BUT I am sure would give you another break until your stress was somewhat relieved in a few weeks.

Please let us know what the local doc says and how you are feeling, some of us are worrying, ok?

Then the 2nd month he has me on (just started) Biaxin 500mg 2 times daily and levaquin 250mg 1 time daily. On week 2 and 4 I do flagyl again. NOTHING ON WEEKENDS

Blood work every 4 weeks.

We shall see but so far Im getting some nice aches and pains in my joints that I didnt have but nothing I cant handle.....yet.

But my skin condition is getting MUCH MUCH better. That is big for me.

(Tin cup yu crack me up,. Going to Dr. J tomorrow shall I send him your regards?)_
pattiecake

In June, took 3 days off again due to traveling. When restarted tx had a minor herx. So at my visit to the LLMD last week, I asked if I could start pulsing since I have been herxing when I do this. We decided I should give 4 days on/3 days off a try. I have had a mild herx since then - low fever, slight muscle aches, feel like I have sunburn, weird burning headache behind the eyes. (I am also pulsing the artemisinin.)

You ok?

Thinking bout ya!

Pattiecake..said

"Going to Dr. J tomorrow shall I send him your regards?"

Oh for SURE! PLEASE DO!

Tell him Tincup loves him and thanks for helping all our children!

Did I tell you I actually got to meet him IN PERSON at the Reston, VA conference?

It was one of the best things that ever could have happened to me. And he signed my autograph book too!

Hope you all have a safe trip.. and let us know what he says... and thanks for remembering and asking!

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If you get the choice to sit it out or dance...

So sorry it took me so long to get back here- it has been nuts the past few days!

The movers are coming in the morning, and I still have a boat load of packing to do...and re-packing of a few things that I just now found out can't go in the moving van.

Had to take Big Bob (the cat) into the vet this afternoon...poor baby has some sort of infection in his cheek, so we are both on antibiotics now. I asked the vet for a little sedative for the two day drive...but if Mr. Bob isn't up to par by Saturday- I really don't think he will need it.

I am hanging in there, but by a thread right now. Have stopped my meds. (it is my off week anyway) So hopefully, things will improve in that category soon.

Lightfoot came over to say goodbye today and I handed over the last of the CO stuff to her. I sure will miss working and playing with my great friend and mentor!

Thanks so much for all of your replies and insights- I so appreciate them, and you!

Sorry- have to run and get some more boxes!
I will try to get back to your specific replies a bit later.

Much love,
M