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» LymeNet Flash » Questions and Discussion » Medical Questions » done with rocephin, what next?

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Author Topic: done with rocephin, what next?
searching4truth
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Hi,
I have been on IV Rocephin for about 6 months. At my LLMD appointment last week he told me that he thinks it has run its course and is no longer effective for me. We are both thinking my Bartonella is coming back. I treated Bart with Rifampin last year with fair success. At no point in my treatment though have I felt "good", although I have had my best improvement on Rocephin.

He now wants me to start IV Doxycycline. We are also adding Tindamax, I am just waiting for it to arrive in the mail. I haven't priced it yet, but I am pretty sure I wont be able to afford IV Doxy. The most frustrating part is that I JUST purchased another month of Rocephin, and he wants me to trash it. I cannot in good conciense, throw the medicine in the garbage.

So, what are my options? What has worked for you? I had a hard time tolerating orals, because of my stomach. Bicillin helped, but was not strong enough. Iv rocephin gave me the best results thus far. I am open to other IV, if I can afford them. And I am open to other orals. Lyme does not seem to be my biggest issue right now, but Bart is predominantly my biggest infection right now.

Thank you!

Posts: 427 | From Pacific Northwest | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
CaliLymer
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4truth,

Check needymeds.com

They offer FREE IV meds in certain cases. I think I saw Tygacil in there. Which is like doxy but stronger.
Let us know how it works out

good luck!

Posts: 215 | From CA, USA | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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If bart is a major problem then expect it to become even more a problem once the rocephin is stopped. Per the Dr B rocephin is bacteriostatic for bart but not bacteriocidal.

The first time hubby did IV rocephin (took 3 months to do the normal 2 months dose) back in 2003 the improvements from that med started going away within a week and probably within a month it was almost like he had never even done the rocephin.

It was at least 3 or 4 months until we could find another LLMD and they tried treating bart with the then standard one month of oral levaquin. Did next to nothing. Even after extending the levaquin to the new standard at the time which was 3 months.

I would try to talk your doc into keeping you on IV rocephin and adding IV zithromax. Then I would add in oral levaquin or factive and then oral rifampin and lastly oral tindamax.

A fluroquinolone such as cipro, levaquin or factive might actually help your stomach if bart is part of the G.I. picture.

Or if you want to try something alternative then I would try cryptolepis or sida acuta if either is available.

If you were not on a cyst buster such as tindamax or flagyl while on the rocephin then I think your LLMD made a big mistake. Hubby did not do that the first time either but most docs have learned to include those meds now. Especialy after the first month or 2 of IV.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

P.S. It doesn't sound like your doc is much into combining meds. Unfortunately that is usually essential to make real progress against these infections.

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
searching4truth
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Bea, thank you. That is exactly what I was looking for. I will look into this and take it to him. He does combine meds, and the only reason I did not do the Tindamax earlier was that I could not afford to add it. But he has been wanting me on it for a few months now.

We did not really realize that the Bart was coming back until the past couple of weeks. My bi-weekly labs are starting to come back telling him that i am dealing with coinfections that live in the red blood cells. (I do not know what that means, but that is what i was told) I, personally, think that most of my longest running and most difficult symptoms have been Bart. As has my biggest herxing experiences, from Rifampin. I took Flagyl for quite a while last Spring, summer, and into the fall.

We have tried many combos. He is certainly open to my suggestions. He is an ILADS doctor, and so far I have not had to say no to very many things regarding medical choices. Luckily, I have a very determined husband who is willing to work long hours to help pay for my medication. But I am at a crossroads right now I think, and I want to research my options before I come to him with alternatives. So thank you for all the good combo ideas.

Can I ask, what is bacteriostatic? And how is it different from bactericidal. I assume the latter means that it kills bacteria? And how is your husband doing now? Is he still treating?

Again, thank you!

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seibertneurolyme
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Bacteriostatic means that it keeps the bacteria from multiplying but does not clear the infection. Kind of keeps it from getting worse but does not get rid of it.

Hubby is on a break from antibiotics for the first time in over 3 years. He has been sick for a total of 11 years and in treatment for over 8 years. Took about 3 years to get a diagnosis.

We had an LLMD appointment yesterday. The doc said that hubby has been so sick that what he thinks are good days a normal person would think they were at death's door. When you are constantly sick your perception of what is normal can get altered.

Thankfully hubby is actually doing better off of meds than we expected. We spent most of the appointment discussing various lab test options and trying to figure out how to get the most info for the least money. Hubby does not produce antibodies to many things and a lot of the problems have been figuring out just what he has so we can treat it. We figured out a med challenge protocol so that he can repeat some PCR tests with some labs and also do some blood slides and possible cultures.

We did not really know until last summer that hubby had had ehrlichia or anaplasma as well as bartonella or BLO (bartonella like organisms) and babesia. Still not sure if he really had rocky mountain spotted fever as well.

Hubby is going to try LDN (low dose naltrexone) again to see if that will help out his immune system. That might be another option for you.

The combo of sida acuta and ivermectin seems to have really helped hubby with his babs (on top of his other babs meds). And yesterday looking at my chart of his weekly bloodwork it was obvious that that combo raised his WBC to normal and it has dropped low again since stopping meds almost a month ago now. Still not sure if that is because that combo was working just on babs or if it was somehow helping with the ehrlichia/anaplasma.

Hubby's bloodslides from Clongen lab finally came back clean in December 2010 -- the bartonella or BLO was gone (after about 2 1/2 years of treatment with levaquin and rifampin and then factive and rifampin plus tindamax). He was on low dose mino and low dose oral zithromax as well. But oral and IV zithromax are worlds apart in hubby's book.

In December 2010 he was on the IV Rocephin and IV Zithromax and oral tindamax. He continued on those meds for a couple of more months and then we went after the babesia again. He did a total of 6 months Iv Rocephin and 4 months IV Zithromax and was on tindamax for 4 or 5 months I think.

Now after 14 months we are hopeful that the babesia is gone, but further testing is needed to confirm that.

If we are lucky we are left with ehrlichia/anaplasma (supposedly the easiest infection to treat) but it only responds to doxy which hubby has been on for 5 or 6 months now. And the combo for difficult cases is doxy plus rifampin -- but hubby could not take the rifampin while on babs meds as it lowered the bloodlevels of 3 or 4 of those meds.

We are hoping it is just ehrlichia/anaplasma and lyme now but babesia may not really be gone. Time will tell if the tests do not I guess.

Hubby tried IV flagyl last summer and that is so much more powerful than tindamax or oral flagyl. Some docs like to add that in at the end of treatment. But in your case I would go after the bart first.

Hubby's seizure-like episodes and parkinsonian tremors and myoclonus are hopefully all in the past. Those symptoms have been pretty much gone since the treatment with IV rocephin and IV zithromax. We always felt the seizure like spells were from bart and the tremors were actually more tied into babesia.

Hubby has come a long way, but nausea, fatigue, headaches etc etc are still major problems.

Bea Seibert

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TF
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The coinfection that lives in the red blood cells is babesiosis.

The standard treatment for that is mepron and zithromax. Add in artemesinin in a pulsed fashion.

Read it in the Burrascano Lyme Treatment Guidelines.

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