Cpnhelp.org

Cesare,

Rifampin, along with Doxyi, was my first pair of abxi beginning more than four years ago.  I went along for three plus months in ok survival mode, then began flagyli and spent the next six months almost non-functional.  I blogged about this, and remember being bitten by many ticks in Indiana before I was even five years old.  I was never tested but am very certain I had at least one of the tick-borne bugs.  I am now in my fifth year and back on Rifampin and react very little to it - but enough to know it is doing something good. 

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

I had been on rif (600mg) + roksy (300mg)  + tinii ( pulses) for one year a month ago I changed it. Since that, time I've been on claritro (1000mg)  + rif (600mg)  + plaquenil (200mg)  + tini (pulses). In the future I am going to add minoi ( 100-200mg)

The treatment is going fine:)

 

zaz

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Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland

Rifampin and Zithromax treat Bartonella. Levaquin on it's own is also a very good choice (4-6 months). Best, Chris

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CAPi since 11/06 for Cpni, Lyme, Bartonella, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

You might want to re-read this post about the FDA black box warning regarding Cipro and Levaquin..

http://www.cpnhelp.org/cipro_levaquin_black_box_

Personally, I wouldn't take or recommend it .

JeanneRoz

 

addendum -- arrgh.. this link doesn't work but if you "search" our site you'll find it!. :)

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Yes, there are problems with some people but many Lyme Dr's I've talked to say it's rare. You must up your magnesium intake however.

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CAPi since 11/06 for Cpni, Lyme, Bartonella, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

Thank you all for your help. Does anyone know If the dose of Azithromycin has to be increased for Bartonella treatment? And which dose of Rifa is recommended for bartonella?

When taking Rifa should I stick to the Doxyi? So its doxy,rifa,azi and pulses?

 

Thanks a lot!

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

That was my regimen until I stopped Rifampin, and am now on the same one again after being off for 2 1/2 years. If I had not been still somewhat foggy, I would not have stopped it then, because in retrospect I might have benefitted from a more extended length of time. I think I was hungry from taking it twice a day, which meant long periods of tight discipline every day for the first 16 months.

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

Most Lyme Dr's prescribe 300mg 2x day of Rifampin for Bart along with 500mg Zithi a day and Flagyli pulses later. It's rough on some people and many start with 150mg 2x day and work up. It's higher than Stratton's dose for Cpni. Best, Chris

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CAPi since 11/06 for Cpni, Lyme, Bartonella, Myco P, CMV, HHV-6 infectionsi. Doxyi 200mg daily, Zithromax 250mg MWF. NACi 2250mg daily. All other supplementsi.

Thanks a lot to all! So I f i am right - I can drop the doxyi while on rifa?

So my plan at the moment is build up rifa to 300 x 2, azithromycin 500 p.d. or less, and flagyli pulses......

 

It is such a great community here - If you don t find it on the web - ask cpnhelp members ! They do know......  

 

Thanks,thanks, thanks...................

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

I hope others come on - I haven't looked for that on the site, but I would definitely continue the Doxyi. I have taken it every single day since day one of my protocol, 2004. It keeps on working without any side effects.

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

Anyone else here treated bartonella?

I am going to start the rifa soon . Does anyone of you have a link where the protocoll for bart is written?

I mean if I have to take the azi 500 daily or just pulsing it? Are you going to drop the doxyii while on azi high dose?

Thank you all!

take care

 cesare

 

> No, I am about to start. 600mg Rifampin a day is recommended. 300mg 2x a day. Plus 500mg zithii a day OR some do 500mg zith MWF. Then add in Flagylii pulses. You can drop the Doxy while you are on Rifampin. Stratton does as long as you are on Zith, Flagyl pulses. > > >

 

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Cesare, would you be willing and able to share some of the symptoms that you have learned are specific to Bartonella infectionsi, I am curious about the ones that differ from the other tick born infections?

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Hi Louise! 

Bartonella
. More ticks in NE contain Bartonella than contain Lyme
. Clinically, seems to be a different species than "cat scratch disease"
. Gastritis and skin rashes, CNSi, seizures, tender skin nodules and sore soles ,hepatitis

Explanation: Bartonella spp. bacterium
Symptoms: Fever, chills, headache and severe pain in the tibia, weight loss, sore throat, papular or angiomatous rash

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Cesare, NE could be New England or Northern Europe more likely what you meant by that abreviation?  Many ticks in US carry it also. Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Hi Louise ! I saw the term ne just a few minutes ago - I copied the text from another site. I am sorry I don t know what ne stands for. Cesare

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

I guess that it is a geographical location.  One more could be North East.  No problem.  Thanks for responding.  I believe that Sarah replaced Doxyi with Rifampin and continued on Roxi and Tinii as I read somewhere here on the site , that may be helpful to know.  Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

 

there are a lot of people on the Polish Lyme disease forum (2000 active members) who have bartonella ( bartonella like organism?) .

The treatment is:

rif 600mg + azitro 500mg -1000mg + falgyl /tinii ( pulses) or tini  every other day - tini in Poland is very cheap

rif 600mg + roksy 300-600mg + flagyli /tini (pulses) or tini every other day

rif600 + doksy 200-400mg +flagyl/tini pulses or tini every other day

sometimes palquenil (200-400mg) is added to this combo

 

or the alternative treatment is

Levaquin 500 - 750mg

 

BTW we buy levaquin in Germany it is not available in Poland

 

zaz

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Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland

Zazul, nice to hear that your treatment is going well for you.   Thanks for your posts.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

I am waiting for the results of bartonella testing both from Igenex Labs. as well as Fry Labs.

Can anyone comment on either or both of these labs for bartonella testing? Igenex did the lyme testing for me and I met all their standards for positive results meeting CDC criteria.

Hoping to hear back.

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diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BID,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, no rifampin as yet, just doxy and 1 gram daily of IV ceftriaxone, soon to

Cesare,

Congrats are in order for you as well!  Bartonella is not one of mine, but there certainly appear to be many on the site here who know how to treat it.  I am so happy to know you can finally treat this.  Sending positive thoughts of total and complete healing for you!

Best of luck to you!  :)

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Hi zazul !

You wrote :"rif 600mg + azitro 500mg -1000mg + falgyl /tiniii ( pulses) or tini  every other day - tini in Poland is very cheap "

So the azithro 500 is each day or pulsing and do you know the length of treatment? - Thanks a lot!

 

Amd should the rifa been divided in 2 x300 mg or once a day?

Cesare

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Burning Feet! So what I read in another  Lyme forum - burning feet is a strong sign for suspected Bartonella!

Just wanted to let you know....

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

update bartonella

Ok - I went to my doc today how to fit the bartonella treatment into the capi.

He feels uncomfortable wit the high azi dose 500 p.d. and suggested to add rifampin to my existent whelddon cap .

That is

azi 250 m/w/f

doxyi 200

rifa 300 mg ( maybee we go higher) but for the beginning 300

and metroi pulses

Should this be enough for bartonella or is it a good way to go for bart? Or is it creating resistance?

Did anyone took 600 mg of rifa along with azi 250 and doxy 200?

Best

Cesare

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Hi Cesare, 

If  the herx is not strong you can take azithro every day if the herx is too strong take it every second day.

You sholud start taking rif  form 150-300mg daily , if the tolerance is good and herx is not very strong you can take 600mg.

I am taking rif on daily basis (once a day)

My friend from Polish lyme disease forum gets treatment in the US by  doctor H. (LLMD). The doctor told him that  bartonella, mycoplasma and chlamydia are the most difficult to treat...

The treatment of bartonella takes from 3-4 months to a year or longer. If you have  no improvement after 6 months of this treatment then consider levaquin

zaz

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Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland

Hi Louise,

 it's nice that you remember me :) How is your treatment going?

best,

z

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Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland

Thanks zaz !

 

As I wrote my doc wants me to stay on azi 250 m/w/f

doxyi 200

and now adding rifa beginning with 300 maybee more later

Is that a good choice?

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Yes, I take 300mg Rifampin on an empty stomach two hours after my 200mg Doxyi, along with Azith MWF, which I take at the same time as Doxy.

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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA

I do not know if 300mg is enough for bartonella.  Polish LLMDs usually recommend 600mg.

don't forget about vitamin d3 when you are taking rif

http://www.cpnhelp.org/rifampin_users_may_need_e

zaz

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Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland

Biaxin/Rifa

Hi to all! 

I talked to my doc today, he said clarithromycin 1000 and rifa 600 might be a good alternative for bartonella.

And it should cover cpni as well... 

Anyone else taking it or have any links? Or are other macrolide - like azi or roxyii for bartonella and cpni better?

 

regards

 

cesare

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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi 500 each day,Doxy 200, tini pulses , Oral Vancomycin for c.diff

Hi

 

I take rif 600mg and clarithromycin 1000mg It works realy good.

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Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland