Cpnhelp.org

Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256.  CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg (Prev:3 days on 2 off cycle and holiday wks 6,7)

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

Reve, I know you've been reading here a lot and for quite a while now, so I'll be brief. Repeatedly starting and stopping abxi is really not acceptable. Ramping up slowly, but being consistent, is the proper route. Doxyi is not to be 'pulsed'! I don't know anything about Biaxin, so I can't help you with dosages. I'm sure someone will answer that part soon. Now, repeat after me: feeling lousy means the antibiotics are killing my disease, feeling lousy means the antibiotics are making me healthy...

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Does anyone know the possible consequences of starting and stopping so I can tell my doc?  Why is it not a good idea?  I'd love to understand this better.  He tells me it does not cause resistance and is easier on my body.  Do I tell him it does cause resistance?  Or do I tell him that not keeping a steady level in my body causes the bugs just not to die (which I can see as being a definite possibility and problem)?  Can anyone give any details?

Thanks.

 

 Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256.  CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg with 3 days on 2 off cycle and holiday wks 6,7

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

http://www.cpnhelp.org/development_of_antibiotic

The above link will explain the dangers of inconsistence with the protocol.   The initiators of the protocol chose the abxi they did for a number of reasons, but the most salient advantage was that doxyi and azithromytcin (or roxithromycin) work in sinergy with each other, being more effective in pairs and each preventing a different reproduction mechanism in Cpn that might lead to it become resistant to the protocol.   If you take too many breaks from the protocol, each time the cryptic phase of Cpn gets a chance to come back into action and given that the conditions for its reproduction are right again, it will continue to spread in your body.   Crytptic Cpn is difficult to eradicate.   Other physicians may choose to administer different antibiotics and if they understand the complexities of treating Cpn then all should be well, but the danger is that these physicians may not be familiar with Cpn reproductive cycle and misunderstand that way in which it should be treated.

I have no experience of Biaxin, so cannot say anything about it.    

The analogy with Chemotherapy is appropriate in some respects in that the CAPi will often make you feel worse before it makes you feel better, but in other respects it is not a good comparison.   Chemo drugs are extremely caustic, they can burn the skin and people who administer them has to be very careful to ensure that none gets on the skin of the patients.   It also has the same effect on internal membranes, which is why there is a limit to how much chemo patients can receive.   Abxi are unlikely to cause the kind of damage that chemo drugs cause.

 

Michele (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

 Yes, I'm with Michele in that the chemotherapy metaphor is completely inaccurate in terms of the antibiotic agents (with the possible exception of flagyli?). Having used them for three years now, I find them not at all hard on my body. It is the die-off reactions that are hard, and they can be likened in a metaphorical way to "feeling as bad as chemotherapy" but that's feeling, not in terms of the actual biochemical effects. One has to be careful between the differences in reality and metaphor which captures how it feels. 

Dosages listed here http://www.rxlist.com/cgi/generic/clarith_ids.htm say for Cpni and Mycoplasma p. 250mg every 12 hours is the dose for Biaxin.

Ask a microbiologist and you'll find that on/off courses, fluctuating blood levels, and short bursts of antibiotics are some of the laboratory preferred methods of creating resistance. Some physicians have argued that by doing so you drive the bacterium into a persistent state, let it come out of persistencei by pausing, then hit it while it's vulnerable. As we have have a better method of dealing with persistence (flagyl/tinii) without risking resistance, we don't have to risk burst pulsing the regular abxi.

The main thing, Rieve, is that if you can't tolerate the dosages you have to ramp down (or stay at that level with the biaxin) a little longer before increasing. Your doc clearly has a different model in mind, and may not understand the issues of secondary porphyriai and the like, as it's unique to Cpn--- his approach sounds a bit more Lyme oriented, and porphyria is not a problem there. Lyme doc's are used to ramping up to higher doses much faster. 

CAP for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Hi Reve,
I agree with Jim & Michele - I think the chemo anaology is a good one in how lousy treating this bacteria can make you feel, but not in terms of the antibiotics.

One of the peculiarities of my particular Cpni infection is that I don't get die-off unless I keep a strict diet (avoid sugar, caffeine). I suspect the added sugar gives the Cpn enough energy to survive the antibiotic assualt. As a result I can pretty much gulp down the pills and not suffer any consequences. Clearly if it were the abxi which were poisonous then this wouldn't happen.

Also by backing of Vit D I can make my reactions to tinii/flagyli negligable - again shows that the reactions are die-off, not toxicity.

In his patent, Stratton lists the dosage of Biaxin as 500mg x2 a day (table 13d page 36). However I would probably take that as an upper dosage given what Jim has said above (250mg). Also remember that for azithromycin there are two main dosage levels which people are taking here - some are on 250mg 3 times a week, and others are on 500mg.

On the resistance issue, although we don't fully understand it, I do think its better to be safe than sorry and not pulse, just in case the pulsing model for creating resistance is correct.

garcia.

CFSi since 01. Infected CPn 01-06. Started CAPi 03-07.
Currently: Azith+Doxyi. 4 Pulses done. Welchol 4xday. Sauna every other day. D 2,500IU

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Hunter: Don't think - experiment

Reve, to borrow your question and to answer it with my experience: this IS how we get better! Your responses are what is becoming in our twisted world - hoped for and classical. But I really have to agree with the concensus that pulsing with abxi, except for flagyli, which does not cause resistance in our use, is way off the ideal. So many doctors new to this seem to have an urge to "do it better" ("we'll do this MY way"), but sometimes learn. He/she might; meantime, you are doing nicely.

 

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. flagyl total 48 pulses NC USA

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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

The CAPi antibioticsi aren't poison to us, only to the cpni. Thirty years ago I took two courses for ten days each of Flagyl plus another antibiotic. It made me feel better while I was on them. (This was before the discovery of cpn.) When I started CAP two years ago, by the second day of a Flagyl pulse, I was vomitting out of control, and I would still be retching the day after I stopped the Flagyl. This wasn't a side effect of Flagyl; this was from dying cpn. This second year I'm on continuous Flagyl with no nausea at all. Flagyl doesn't make me vomit, but chemo would. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Reve -  In a past life, I have done considerable work with most of the macrolides. 

Biaxin 250mg taken once daily is not equivalent to Azithromycin 250mg taken every other day.  Very very different therapeutic dosing curves, pharmacokinetics and dynamics as well as very different MIC's and MBC's for bugs. 

Unless you are under a 100 lbs I would not advise taking Biaxin 125 mg (if you are-  it's available in a 125  strength in the pediatric formulation).  Most likely you should be taking Biaxin 250mg twice daily to start and then when tolerated ramp up to the dose to 500mg twice daily.  There are some diseasesi that are routinely treated with 1000mg of Biaxin twice daily for a total of 2000mg per day.  

To increase Biaxin's tolerability, take it with food and preferrably food with a fairly high fat content - cheese for example.  Biaxin is designed to be taken with or without regards to meals so you don't loose any efficacy from taking it with food but you do blunt some of the rapid absorption and usually blunt the metallic taste by taking it with high fat content food.

As to the 250mg taken once daily in a pulsed fashion -   In every resistances study that I have seen in which they provoke pathogens to become resistant to antibioticsi - this is the type of dosing they use.  Subtherapeutic in a pulsed fashion - just the ticket to help the microbe develop a mechanism of resistance.  

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BID 9-1, Azi 375QD  Roxyi 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Novantrone, Rescue Prednisone

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy,

Please let me know if this sounds like a good plan.  Based on what you have said, my goal will be 250 mg twice a day for a while and then ramp up to 500 mg twice a day before starting flagyli.   To get to that goal without getting too sick at once, would it be reasonable to take the following, of course, with my doxyi and NACi and without any pulsing:

Take 125 mg Biaxin twice daily for a week or so to get adjusted again to what I was tolerating before(or should I just stay on my 250mg once daily for a week or so since that is what I have been doing, or is this wrong because Biaxin only lasts 12 hours?);

Then take 187.5 mg twice daily, and wait until I'm done being sick;

Than take 250 mg twice daily, and wait until I'm done being sick;

Then continue to add slowly until I get to the 500 mg twice daily?

I'm understanding that pulsing is bad, but I think slow steps up are ok?  Is that correct? 

And is the best goal for anyone really 500 mg twice daily before taking flagyl, and not just 250 mg twice daily?  Is that correct based on what you know?

Thanks.  This will help a lot, a whole lot! 

Thanks everyone for your comments as they have all been very, very helpful.

Reve'

 

Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256.  CAPi 6-07 Current NAC 2400 mg; doxy 100 mg x 2 and Biaxin 250 mg

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

By the way, I weight about 125 pounds.  When I started adding the second 250 mg in the evening (which made 250 mg twice daily) I was very sick after 5 days, so that is why I was hoping to do 187.5 twice daily as an inbetween step just to make sure I don't get slammed hard all at once. 

 

 

Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256.  CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

Also, we are talking about Biaxin here and not Biaxin XL, right?  I don't know the difference, but the dosage is different and whether you can take it with food is different, I think.

Reve' 

Memphis,TN - FM, IBSi, rhinitis, depres ~20 yrs. CF, intestine, bladder, pelvic inflam., red itchy skin, anxiety ~5 yrs. CPni titer 1:256.  CAPi 6-07 Current NAC 2400 mg; doxyi 100 mg x 2 and Biaxin 250 mg

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Memphis,TN - FMSi, IBSi, rhinitis, depres (~20 yrs) CFSi, intestine, bladder, pelvic inflam., red itchy skin, anxiety (~5 yrs). CPni titer 1:256.  CAPi 6-07 Current NAC 2400mg; doxyi 100mg x2, Biaxin 500mg x2, pyruvate, supplementsi.

Rieve- I would go by Daisy's much more knowledgeable take on this. It's true that the reference I cited said 250mg for Cpni, but everything else was 500mg twice a day! And every time in the past I was given courses of Biaxin it was at the 500mg dosing. Your plan looks like a rational way to grade it up slowly. And yes, the idea is to get on both the doxyi and the biaxin and tolerate it before doing the flagyli pulse.

CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Reve -

Yes - I am talking Biaxin and not Biaxin XL - At some point you may want to take Biaxin XL just for convenience sake but right now, I would stick with 250mg taken twice daily until tolerated.  Then maybe go to 250mg in the AM and 500mg  in the PM until tolerated and then to 500mg twice daily.  Biaxin XL is an extended release formulation of Biaxin designed for more convenient dosing.

There is nothing magical about the 5 day number in terms of drug accumulation that I can think of from a pharmacological stand point.   Wish I could be more help to you but only you can decide if you can tolerate the Biaxin 250mg taken twice a day. 

Perhaps you could continue to take the Doxyi, load up on the usual CAPi remedies for endotoxinsi and porphyriai for a week or two to prepare your body and then try to go for it on the Biaxin 250mg twice a day.    It really concerns me that you are taking 250mg once per day.  Biaxin definitely doesn't have the Area under the Curve (AUC) to be taken that way. 

On a personal note - I lived in Memphis for around 6 years of my life.  1st G-town and then Collierville.  Next time you drive by Corky's waft a little pulled pork with slaw smell down towards GA. 

Whatever you decide - Good luck!

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAP 5/10/07. Doxy 200 mg, Minoi 100 BID 9-1, Azi 375QD  Roxyi 300 BID 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Novantrone, Rescue Prednisone

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill