Cpnhelp.org

rb- you don't say what the problems are you are having with doxy. Of course, the whole point with two different abx is to prevent resistance which can develop with only one protein synthase inhibitor alone. But Dr. Stratton has said that Cpn is a slow growing organism so a couple weeks off one abx is probably unlikely to cause any problem. Minocycline is quite fine as an alternative, some people find it easier, some have other side effects with it.

INH is also quite effective as a combo with the flagyl, especially for clearing immune cells,but you must have monthly liver tests as in some it can cause liver enzymes to rise. I've been at half dose for a year with no problems at all. You take it on empty stomach. This is one you cannot stop and start, but must stay on it for a number of months once you start (as long as you liver is okay with it) as it can develop resistance in other organisms with only short term use. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)

No vacation RB, please stick with Dox/Azi/NAC.  This is key to keeping CPn under control. Why are you taking Met at 250mg/3x daily ?  The full Met pulse is 400mg or 500mg 3x/day for 5 days, sub therapeutic dosing is never recommended.  Read the patient info sheet on Dox to and get tips for taking it.  ...  Mark

PS Apologies for my empty post, if Jim see it maybe he will remove it. 

Mark Walker - Oxford, England.

RRMS Nov 91, Dx 97. CFS Jan03. CAP (NAC, Dox, Rox) with Copaxone Feb06. Monthly met pulses Jun06 to May 07. Pharma Consultant (worked til Jan03)

Mark, as usual I learned something from you: that my continuing after my 5d pulse with 250 mg at night may not be a constructive thing(or destructive, depending on which side you are on). Last pulse and the latest one I did this for a few days but maybe not appropriate. Your comment would be appreciated.

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 43 pulses NC USA

Minocycline is a very good alternative. Many people on Road Back have been taking it for 10 yrs or more at 200mg a day with no side effects. See the Harvard studies.

Talk to your Dr. about this.

Best,

Christian

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin !00mg MWF (working my way up). All supplements.

Okay: 

My problem with the doxycycline:  The acne-like outbreak on my skin is moving to a point where I may have long term scars from them.  Almost every pore on my face, forehead, back and shoulders is clogged with a plug of oil and many are inflamed and infected.  I'm breaking out like this in areas that have *never* broken out before, and more and more areas are becoming affected.

This gets better during a pulse, but it promptly gets very bad once I stop the pulse.  More on this below... 

So, the idea is to stop (safely, if possible) the doxycycline for a few days(weeks?) to see if the skin effects go away, and then look for an alternative to it. 

Low dose Flagyl: 

Mark, there are actually 250mg pills available in the US, and that was actually how I first learned that Flagyl had a positive effect on me.  So, I am taking 3x250mg every day, with the intention of pulsing it @ 1500 every 3 weeks.  I know this is below the 3x500mg, but it is an accepted dose.  Do you believe that this is harmful?

I'm feeling generally a lot better than I was before I started this continuous thing.  After the last pulse, I felt almost as bad as I did at baseline, and that really worried me.  I had symptoms that I haven't had for 6 months showing up again. 

-rb

On CAP for CFS(maybe?)|chronic infections|generally falling apart| starting 9/2006
Currently: NAC 900mgx2; doxy 100mgx2; azith 250mg MWF; metronidazole 500mgx3 often

Met Pulses - who recommended continuous Metronidazole (Flagyl) ?

I have re-read both Wheldon and Stratton notes on Met (see CPn handbook and DW website). They say pulses of Met every month (CS) or every 3 weeks going to monthly (DW). Neither documents the exact dose to be used during the pulse (Jim this should be addressed). But both say to start with short pulses. (I started with a one day pulse ie 400mg every 8 hours for one day then a break of 3 weeks, then a two day pulse, then 3, next 4, eventually 5 day pulses - DW is my Consultant). When using Met for CPn, Met should be taken - one tablet three times a day for the duration of the pulse (adult tablets are 400 or 500mg depending on your geographic location).

Under dosing of abxs is a bad practice which assists in creating antibiotic resistance so please refrain from doing this. This does not preclude building up your abx dose to reduce die off reactions. The only exception to this is if your Consultant Microbiologist/CPn expert gives you different intructions. However this is personal to you and should not be shared on CPn Help as standard advice.

So is there anyone taking full dose Met on a continuous basis ?? I know there are brave souls who will try anything but please give your poor body a rest from the Met.

You may have guessed that correct use of abxs was a hobby horse of mine.

Mark.

Mark Walker - Oxford, England.

RRMS Nov 91, Dx 97. CFS Jan03. CAP (NAC, Dox, Rox) + Copaxone from Feb06 to May 07. Met monthly pulses Jun06 to May 07. Pharma Consultant (worked til Jan03).

Met 250 mg - RB, this tablet is made for children (200mg is produced in the UK).  For your acne I suggest a topical product based on Benzoyl Peroxide or Azelaic Acid (I have no idea of US trade names but your local pharmacist should be happy to advise the products that US teenagers buy most of/are the best).  I also have an acne problem (I am over 40) but oily skin does not age as quickly so lets look on the bright side.  Met is not used for acne (it is used to treat anaerobes).  Dox is used for acne, so who knows what is happening on your skin.  (You could try getting a test to see if any strange bugs show up in your acne).  When you have completed one year on CAP you could consider DWs intermittent therapy as that gives breaks in the abxs.  ...   Mark

Mark Walker - Oxford, England.

RRMS Nov 91, Dx 97. CFS Jan03. CAP (NAC, Dox, Rox) + Copaxone from Feb06 to May 07. Met monthly pulses Jun06 to May 07. Pharma Consultant (worked til Jan03)

Rica, I suggest you consider a 14 day cycle Dox/Azi with a 5 day Met pulse in the middle, each month.  NAC and supplements are taken continuously.  This is only for people like you who have been on CAP for a long time. (See DW's site for details).  My take on CPn and MS is that we are are going to be vunerable to CPn for life, as there are lots of CPn carriers around us.  Sarah does an abx cycle every 3 months and this keeps her CPn in check, I am in the process of moving to a monthly cycle.  Unfortunately nerve damage in MS may not be completely repairable so pwMS should anticipate that some lasting disabilty may remain.  I am sure you will testify that life with EDSS of 2 is much better than EDSS 6.7 and no more relapses.  Getting to a cycle of abx gives your body time to recover from the abxs which may help your nerves regenerate a bit more. ...  Mark

Mark Walker - Oxford, England.

RRMS Nov 91, Dx 97. CFS Jan03. CAP (NAC, Dox, Rox) + Copaxone from Feb06 to May 07. Met monthly pulses Jun06 to May 07. Pharma Consultant (worked til Jan03)

For those who are looking for CAP information it can be found here and here.   The following extract can be found under the Wheldon protocol entry:

What might a schedule of treatment comprise?

Antimicrobials
Doxycycline 200mg once daily with plenty of water.
Roxithromycin 150mg twice daily or Azithromycin 250mg three times a week.
These are maintained without a break for at least six months.

N-acetyl cysteine 600mg - 1,200mg twice a day, should be taken continuously. This is a commonly-taken dietary supplement, available at health-food stores. It is an acetylated sulphur-containing amino-acid, and may be expected to cause chlamydial EBs to open prematurely, exposing them to starvation; more on this and other benefits here.

Two or three months into the treatment regimen, or when the patient is experiencing few problems with reactions, three-weekly cycles of intermittent oral Metronidazole are added. During the first cycle metronidazole is given only for the first day. If problems with reactions are found, the period of administration is kept short. When metronidazole is well tolerated the period of administration in each cycle is increased to five days.

The dosage of metronidazole is 400mg three times a day. If it is suspected that a patient may have a heavy chlamydial load a smaller daily dose may be given.

The eventual aim is to give all three agents intermittently so that the patient has a respite from antibiotics. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazole in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended.

Rifampicin is not suitable for intermittent use, and azithromycin may be given instead.

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Before getting verbose, let me start off with a simple problem statement, and the questions I'm trying to get answered:

I believe that doxycycline may be causing some negative side-effects, skin issues being among them and I would like to test this.

Question: How can I test this?

Question: If going off of doxycycline for some period of time is the answer, how do I do that safely?

Question: What are the alternatives to doxy? (minocycline was mentioned I believe.)

-------------now, my blathering-----------

The skin condition does not respond to benoyl peroxide, azelaic acid, isotretinoin, salicylic acid, topical antibiotics, ... I'm getting bored of listing things. I think that this stuff is a secondary reaction to whatever I'm affected with. The only things that has ever even made a dent in this stuff has been Accutane or one of the nitroimidazoles.

To continue with why I might hate doxycycline, I discovered that my dermatologist had prescribed doxy for me in ~1994, and I only took it for about 2 weeks, compared to the months that I took other abx that he prescribed for me. There was some reason, which I can't remember now, that I discontinued use. It's possible that I had some significant side-effects even then.

Since starting this regime, my skin has gotten significantly worse and is becomin more widespread and cystic. I'm going to stop this, because I am not trying to convince you of how bad my skin is, and honestly, I'm not sure that it is the only thing that is being affected.

What I do want to do is to try to find out if it is the doxycycline that is causing this, and possibly other symptoms. I don't know any way to do this other than stopping it for a short period of time.

I would like to know the smart way to do this. My doctor is at the point of discontinuing the doxy altogether, and if I don't approach him with options, he'll most likely recommend discontinuing this class of abx altogether.

If the doxycycline isn't causing these problems then I can just request that I be allowed to stay on it. I believe that minocycline was mentioned as one alternative, are there others?

-rb

P.S. I am going to move my flagyl question to another topic, because I believe that that needs more explanation. The continuous flagyl is only minorly related to the skn issues...

On CAP for CFS(maybe?)|chronic infections|generally falling apart| starting 9/2006
Currently: NAC 900mgx2; doxy 100mgx2; azith 250mg MWF; metronidazole 500mgx3 often

It is really difficult to answer your question on Doxycycline because we are not party to your long term medical history or your experience. You obviously have skin problems that have been going on for a long time.

Generally the symptoms that bother us most get worse upon starting the Doxycycline/Azi combo... In my case more hair fell out from my scalp (longterm Alopecia), my hip joints got much more painful, the IBS pain became a permanent feature, I had a cough and sinus problems too. Luckily for me I also saw some improvement in my scalp after about 4 months, not much and as I have said before if it had not been something visual I could easily have missed it. Later on in the treatment I developed a rather unusual rash on my body which lasted about four months, it went away but comes back in different sites at different times. It seems to be related to the treatment in general rather than one particular drug, although there appears to be a little less inflammation when I am taking Flagyl.

Improvements are so slow and gradual that it is much easier to notice the negatives than the positives of this treatment and in the beginning the process is scarry. Some people's experience is that you can suffer negative symptoms for up to a year from the beginning of the CAP, some symtoms get worse before they get better and that time is very frightening especially if you are on your own doing this.

So are you allergic to doxycycline or are you just having an upsurge in the inflammation that treating Cpn with ABX is causing? I can't answer that question for you... I doubt whether your doctor can either, s/he will be influenced by what you say to him/her, unless s/he is experienced in this treatment. It's scarry for them too...

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

I've found niacin to be quite lethal to acne. You might give it a try. Don't get the time-release form; in this case you want the skin effects. (They appear at fairly low dosages, so if you can find 50mg or 100mg pills, that might be best.) Also, don't get the 'no-flush' variants (niacinamide or inositol hexanicotinate); again, you want the skin effects (although, in my experience, there's an effect on acne even at levels below those which cause flushing).

I am sorry about the acne, I really only have one thought; are you taking any hormone supplements.  When I was taking DHEA I reached a point where I was full blown acne, face, neck back.  My doc recommended I take 7 Keto DHEA due to the testosterone? 

Could this be hormonal or is it the effect of the Cpn fighting in & coming out in your skin?

I understand, that must be frustrating.

Best Wishes & Blessings

Ruth

CFIDS/ME, FMS, IBS, EBV, Cpn (375 mg Metro, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, NAC 1 gm