So-who votes yes and why?

And who says no and why?

Thank you.

Would you consider trying ceftin or omnicef for a month, just to see what happens, and upping your mepron dose? That could also reduce the Lyme herx when and if you do switch to IV. And didn't you also mention bicillin? That has a pretty good reputation. And this could be your chance to try a cyst buster, too.

By the way, the rocephin herx can be extreme, but it can't compare to the minocycline and flagyl herxes.

I too, have heard of ALOT of Rocephin relapses and would myself not want to do that particular drug.

If you DO decide to take Roc, then make sure you follow with plenty of flagyl and plenty of orals.

I agree with working on the babesia first. Good luck!

I say save iv 's for unusual cases that can't be cured without years of orals...

my opinion only...most older llmds seem to hold off on iv's until the last resort, and combine orals agressively for awhile instead first...

worked for me....

good luck making your decision

Your doctor was so well received at the conference!

I think that asking the question, though, of people who have tried IV is so smart because this disease is so different and driven clinically.

I think your doctor will listen to all of your probing questions and wants informed patients.....

I actually herxed more on orals Dr C suggested after the IV. Every oral Dr C tried was horrible. Clidamicin, Quinine, flagy, rifamprin. But I just couldn't tolerate the constant herxes.

So began my rife journey. Everyone is so different you might get relief with IV, but I doubt it will happen in a month. Have you checked with your insurance co. to see how long they will pay for IV?

I also have (had?) Babesia-soles of feet still sweaty at times. But I stopped the mepron for 2 days because of intense depression and today the depression has lifted.

I am continuing on ketek, 800 mg/day, artemisinin, 700 mg/day (3 weeks on/1 week off) and nystatin, slowly upping dose.
And liver/detox supplements.

Janet

BUT!

It did clear most of my neurological symtpoms that were making my life completely unliveable...

The reason it couldn't do more was that I had babesia WA1...I was one of the first wave able to be diagnosed with the new strain of WA1 (the Sonoma Dept Of Health had just develped the test).....this was three years ago.

So, Rocephin was not a bad idea at all....

It just wasn't the "cure"...Frankly, I never expected it to be. I was just too sick to believe that much more would be helpful at that point...It helped me tremendously.

This last month has been pretty good though. And my Dr is thinking I'll come off the IV in a month. For me I think it has been the right choice but it has been a long road and it isn't over.

I could have a very different opinion if things go south after I come off of it.

quote:

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Originally posted by lkpod:
(Anyone have opinions on how to come off and stay well. I'm debating flagyl. If I do the flagyl, should I start now or right after the IV ends?)

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I'm glad you've gotten better with the Rocephin. The first time I was on it (for four months) I got a lot better and felt like a whole new person. Unfortunately, I didn't do well after I came off it and I think it's at least partially because I wasn't on a good combo while ON the Rocephin or when I came OFF it. From what I've read, I think Flagyl might be a good addition BEFORE coming off the Rocephin and then continue it with some good orals when you stop the Rocephin.

Have you been on any orals with the Rocephin?

--Annie

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Rocephin, Claforan, Doxy..Merrem, Vancomycin.

I don't think it's a matter of last resort ... it depends very much on the case, and certainly response to other meds as well.

The neurological improvements for myself and my son have been astounding, but yes..we were on oral combos throughout and after and it has taken lots of effort coming off, and lots of adjunctive therapies to help make the transition.

I'm off Rocephin for 11 months now , and my head is clear as a bell.. (yay!)
but do still have fatigue and body aches
that may be from all the cleansing and other I have been doing as I am shaking up lots of toxins..only time will tell what that's from..
but so far, I feel no brain ailment, only improvement.

Not saying at all, Janet, that this means you should try IV now..cuz maybe you would do better with something else. (?)
Bicillan helps many.
..just saying that you need to consider it carefully and take your own symptoms into account.
What you do during and after as far as treatment (IV or IM) also matters allot.

An overview of what I did was ..was on Zith and Plaquanil throughout, never did use Flagyl, but some need to..
when I went off I did an intensive one month cleanse of kindey, GB, intestines, parasites just to start..and was on immune modulation (can use herbal, or the mushrooms, or moducare or samento..something like that)..
ate very well and slept allot.
Then, back to the gut. Parasites...big deal..attending those for months with cycles of GB, liver, kidney cleanses and intestinal throughout.
I'm still expelling things!!!!!, and with it I think am also shaking up infection that has harbored in these organs as well as clearing old med residue..
I'm taking herbal immune support and infection fighters. Research the best for you.
I take lots of coconut oil.

Also, keeping lymph moving with epsom baths and rebounding.

When I started IV I couldn't spell my name,
but I was also on it a year and a half, and also treated extensively for Babesia ans Bartonella.

I had confirmed Lyme, Bart, Babs and Mycoplasma.

All the best,

Mo

It was after I told the LLMD of my difficulty with spelling and adding that he said IV was needed to get the abx to my brain. I graduated from college wtih high honors and now I sometimes can't spell simple words or add a column of figures without messing it up.

When I told the doctor that I had no support from my husband and didn't think I could handle the herx alone that was when he said maybe try Bicillin and orals. We're waiting on a pencillin allergy test.

My HMO ID doc has already looked at my CDC positive Western Blot and said I don't have Lyme disease, so no insurance coverage. If I fight it they'll probably just drop me Sept 1 on my anniversary renewal date.

If I used up all my life savings I could do IV for a few months.

I'm doing a second course of tx for Babs but stopped the Mepron for a few days because of severe depression. Taking 800 mg of ketek and 700 mg of ARG artemisinin though.

Janet

One more thing to consider is taking care of the PICC line. You do have to be careful to keep it clean, not get it wet etc. So, I guess it depends on if it fits your lifestyle.

Now that I am out working in the garden etc., I just put a hole in my picc line and had to have it removed.