Submitted by Jim K on Thu, 2006-10-26 07:42

Editor- Rosacea is another one of those diseases which is considered "incurable" by standard medicine. We are very grateful to have had Red join us on and demonstrate that this disease also had it's roots in Chlamydia pneumoniae infection. Red also portrays the intelligent, questing mind that has lead many of us to keep searching for some answer to diseases which standard medicine has little to offer in terms of cure. He is one of the true pioneers in Cpn treatment. Red's chronicle of his use of the Combination Antibiotic Protocol for treating the primary diagnosis of rosacea is a wonderful, detailed report. He presents a clear picture of his reactions and improvements along the way, and the story as a whole is tremendously useful not only for Rosaceans, but for anyone dealing with a Cpn related disease. As you will read, although rosacea is is primary symptom, Red reports many other symptoms and reactions which appear common in Cpn treatment for a variety of diagnoses. They confirm the disseminated nature of Cpn-- although we may have a presenting diagnosis where the debilitation from Cpn is more focal, the organism is effecting a much wider variety of tissues than we realize. Red describes his experiments with different pacing and dosages, as well as with other supplements that supported his treatment course. Rosacea exacerbations in his treatment acted for him like a barometer for Cpn kill, giving him ready feedback about the effect of treatment.  Red I thought I'd chronicle my treatment progress for rosacea, etc so others might have this information as reference in the future.   I probably should have started this blog at the beginning of treatment but as you all understand, I had my hands full with just getting through treatment in the early days.   At any rate, I've tried to piece together my early progress here from early posts and some recollection.   And I'll continue updating this blog until treatment is complete.  A full tracking of all my posts in chronological order can be found via tracking my Id here:  My primary symptoms include(d): rosacea, seb derm, thermoregulatory issues, folliculitis and/or keratosis pilaris, cluster headaches, ibs, allergies BTW, I hit the flagyl really hard in my first few months of treatment and then backed off to the standard Wheldon protocol of a 5 day pulse every month later in treatment.  I also "monkeyed around with several other OTCs in early treatment.    I found that I seemed to function and recover from symptoms much better with the standard abx and flagyl pulse therapy, although since this was in later months it is difficult to determine if this was due to decreased cpn loads, etc.   Still, if I were doing this over again, I would choose the slower, standard Wheldon protocol therapy, particularly initially.  I now realize that this treatment is as much about minimizing reactions as it is about killing the cpn...   I also seem(ed) to react negatively to many of the supplements on the Wheldon and Stratton protocols, but luckily I found early in treatment that GliSODin seemed to serve me well as an alternative.     I've used it as an alternative to the OTC supplements (other than NAC) since early treatment... Jan '06 - (Month 1)  Started Azithromycin @ first week of Jan with an initial loading dose of 500mg a day for 3 days, then switching to 250mg 3x per week (MWF).  I had herx reactions for @ days 2-7 of Azithro (flu-like symptoms of congestion, sinus troubles, headache, fever, muscle aches and exhaustion).   Also had stomach/intestinal problems.   I actually was pretty much in bed days 2-4.  I thought it actually might have been the flu, but it stopped just about as fast as it started.   Interestingly, even through the herx, my rosacea symptoms (flushing, burning and p&p's) were much better. Feb '06 - (Month 2) I started Doxy @ a first week of Feb, and my face started flushing and burning like crazy within a few hours of the first dose (not unusual for a rosacean).  I also noticed more pain behind my eyes (sinus pain), but this was about it.  I decided that this might be a new herx reaction and decided to add the NAC (2x 600mg a day) the next day to get over any new herx reaction with it and the Doxy at the same time.   Interestingly, my face stopped flushing and burning within @ 20 minutes of taking the NAC.   I worried for @ a day that the NAC might somehow be cancelling out the effectiveness of the Azithro/Doxy combo, but then was hit again with the flu-like symptoms I had experienced with the initial introduction of Azithro, probably with even more congestion.  I also had a horrible stiff neck which progressed into a really bad headache one day.   Also had stomach problems. I'm assuming all this "herxing" would suggest that Cpn might play a role in my case.  Now, @ 1 week after adding Doxy and NAC, I'm feeling much better.  I woke up with almost no congestion today, maybe still a little left in my ears (making me a little dizzy still), but much better.  I'm still having odd muscle / joint pains (mostly lower arms and legs), and haven't slept well the last week.  Still, it seems like the worst is over.   @ 3weeks later...  Well, 4 days into my first pulse of Flagyl, started @ 3 weeks after adding the doxy and NAC, I really hit the wall.  I know I probably should have done a shorter pulse (1 dose or 1 day treatment) on my first round, but I felt ok after the first couple of days and decided to carry on.  Although I experienced some fatigue (short bursts that usually occurred 2 hours after dosing and lasted for 2 hours or so) and muscle/joint pain on days 1 -2 of the pulse, on day 4, I woke up absolutely exhausted and in fact rolled back over for another 4 hours of sleep (total of 12).   When I finally did get up, I was dizzy, feverish and generally "toxic" feeling.   By mid afternoon, I started to feel nauseous and within an hour or so I felt like I could toss my cookies at any moment.  Only having Vitamin C with calcium in the house and afraid the calcium would interfere with the absorption of some of the abxii,  I decided to try some GliSODin after doing some quick additional research to make sure it wouldn't interfere with treatment... Within 20-30 minutes the nausea was completely gone, and within 2 hours the exhaustion was gone as well.   After about 3-4 hours I felt downright giddy/manic and this lasted another 4 hours or so.   Interesting as I had taken GliSODin before for my rosaceaii and noticed a much, much milder form of "giddiness".   The level of euphoria must be directly related to the amount of ROSi available to be catalyzed by te SOD.   I took GliSODin again this morning and have experienced only milder euphoria so far - more like the effects of a good strong cup of coffee. BTW, with the nausea and extreme fatigue on day 4 of the Flagyl pulse, I also experienced much more facial redness and burning (typical rosacea symptoms), and I also noticed a slight increase of the strange rashes I get during the entire Flagyl pulse (although not as bad as before starting the abx - but these were something the NACi/Doxyi/Azithro combo seemed to be clearing up nicely).   I'm assuming (and hoping?) that this is just one of my body's particular reactions to the endotoxinsi.   It's interesting that I'm also getting the muscle aches and joint pains that many of you have as more primary symptoms. although these are generally fairly mild for me.   I did experience a slight increase in congestion with the Flagyl pulse, but I would say that most of the congestion I experienced came from the inclusion of the Azithro and NAC and was mostly over by the time I started the Flagyl pulse. Mar '06 - (Month 3)  @ 1st week of March... I took another 1.2g dose of flagyli yesterday and was a little achey (joints and muscles) and had some odd muscle twitches last night (mostly in my neck, arms and legs), but woke up feeling well this morning.   Given the two weeks of flagyl (400mg 3xper day) and the three 1.2g doses of flagyl, I figure might be somewhere near what I might expect to be at 5 months or so of once a month flagyl pulse and still seem to making some progress. @ last week of March... After reading that aspirin and salicylates seem to help kill Cpn, I decided to add 2 regular aspirin a day (650mg total) to my regimine @ 3 weeks ago after I seemed to stop noticing any major new die-off reactions during therapy.   With the addition of the aspirin, I noticed a huge increase in die-off reactions which really kicked me in the backside, particularly around my flagyli doses (I'm currently taking two 1.2g doses per week) and particularly for the first 2 or 3 flagyl doses after starting the aspirin.   I've since noticed a decreased reaction to it.   But, interestingly, I have noticed the aspirin seems to have brought on the "metal" taste that many have reported after taking flagyl (I hadn't experienced this before), and the aspirin seems to have eliminated the buzzed feeling I used to get from the Glisodin.    Apr '06 - (Month 4) Continued NAC, GliSODin, doxy, azith, combo with flagyl (1.2mg taken twice a week)...  May '06 - (Month 5) @ 1st week of May... I did try aspirin for 1 month and found that although I experienced an increase in die-off reaction, I didn't feel that I made much progress with it (if at all) for the extra "pain".   So I dropped it, thinking that it was probably just causing more porphyria related symptoms for me than actual killing effect.   Since quercetin is also a cox inhibitor, I'm wondering if it would be similar for me... BTW, I did try artemisinin (200mg per day) for a week while on my regular NACi/Doxyi/Azithro/Flagyli/GliSODin regimine.   Seemed to get an increase in die-off (mostly additional muscle soreness and some additional sinus pressure while taking it and then actually a full on NAC like flu the week after taking it - with symptoms increasing right after taking each dose of NAC/Doxy/Azithro/Flagyl, particularly the Flagyl), but may have made a good step up in recovery once the flu-like symptoms cleared.   The week while taking it was really pretty much of a breeze, but the week with NAC-like flu wasn't all that wonderful (I've not really had this type of reaction since starting NAC 3 @ months ago or so).   It's been a couple of weeks since I tried it though, and I'm thinking of giving it another shot to see if I get the same reaction and then, more importantly, another positive step up.  (Note:  as of Oct '06, I have not tried Artemisinin again...)   Moved to standard flagyl once per month pulse of 5 days of 400mg 3x per day.   Jun '06 - (Month 6) @ 1st week of June... I've been taking the luteolin in the form of Lutimax lozenges,  which contains 100 mg luteolin (along with 10 mg Vit C, 50 IU Vit D, 5 mg Vit E, 50 mg calcium and 100 mg rutin), twice a day for a week now and it seems to be helping quite a bit with symptoms.   The remaining rash on my stomach has cleared up nicely, I have even noticeably less edema in my face, neck and elsewhere, and it seems to have helped clear up the cough that reappeared immediately after stopping the flagyli dose I was taking twice a week (I've decided to go to the standard 5 days a month pulse).   It also has seemed to help give me energy (or rather decrease the fatigue), help with some remaining IBSi symptoms, and help eliminate most of the aches and pains I seemed to experience even while off the flagyl.   I did have a glass and a half of wine the other night and noticed that I ended up tossing and turning all night and woke up in a pool of sweat a couple of times, and woke up with a bit of a rash that cleared up quickly, so I don't think I'll be drinking while on it. All in all, it seems to help pretty well with symptoms and this kind of makes me a bit nervous based on my experience before with things (5-lox inhibitors) that masked symptoms well but seemed to allow these little buggers to multiply underneath the mask.   I think I'll tentatively continue using it as it seems to provide benefit while studies seem to suggest it kills Cpn, although I have no idea if it is actually killing any Cpn.    I will also report its interaction with flagyl on my next pulse (I'm due for one, but I'm kind of enjoying being pretty much symptom free right now.)  I'm also hoping it helps with the endotoxini die-off reaction based on some of the studies above, but we'll have to see... (Note:  Stopped taking Lutimax after a couple of weeks due to increased restlessness at night...)  Jul '06 - (Month 7)  @ 1st week of July...  As a little background for those who don't already know, while my primary symptoms were cutaneous (rosaceaii and other rashes, etc), I also had major thermoregulatory issues and a host of allergies (including IBSi and asthmai like symptoms), chemical sensitivities, etc.   I also recognize now that some aches and pains (including 30 years of cluster headaches) and lack of energy that I had (and assumed where "normal") were definitely related to Cpn (mostly because these same symptoms seem to ebb and flow with abxii treatment, yet they are now mostly gone except during flagyli pulses, as are my other symptoms).   Prior to abx treatment, I would experience one to two week long periods every couple of months where all these symptoms would flare in unison, leaving me wiped out with my own flavor of what many of you would probably recognize as NACi flu like symptoms (fatigue, fever, congestion and sinusitis, headache, brain fog, rosacea, rashes, etc).   The reason I mention these symptoms here is, exercise or anything more than minor physical exertion in temps above 65 degrees F, prior to abx treatment didn't just seem to leave me fatigued due to stealing ATP, it would initially leave me with asthma-like respiratory symptoms and heat exhaustion symptoms, and then leave me with as short as a few days to as long as a couple of weeks of NAC flu like symptoms (again fatigue, fever, congestion and sinusitis, headache, brain fog, rosacea, rashes, etc).    I'm wondering if, in my case, since these symptoms were so similar to the die-off symptoms from abx, that maybe exercise (and many of my other guaranteed "triggers" like salicylates, etc) might have been inducing a die-off of Cpn (or at least irritating the crap out of the little buggers) to cause a major dump of toxins into my system.   The other possibility of course is that exercise could have increased porhyrin levels, making symptoms worse, but it really seems like there was some increase cytokinei involvement (from what I understand of the difference) given the congestion and sinusitis I would also see as a result of some of my triggers.  Anyway, just a thought.   I know most of the members on this site are undergoing treatment for CFS/FMSi or MSi, but Cpn infection seems to have many different manifestations other than those involved with these diseasesi, causing many different symptoms and reactions to treatment and other triggers.   It's interesting how many of the symptoms are or can be shared, but if you consider the fact that in a nutshell Cpn causes an upregulated and continuous systemic inflammatory reaction and combine this with some genetic predispositions and / or some some additional co-pathogens, and you can have some major problems in just about any of the body's organs or systems. The interesting thing related to exercise is that given my particular manifestation(s), after 6 months of abx treatment, I'm now able to exercise daily, and it actually seems to be helping to speed recovery for me.  I do stop exercising shortly into flagyl pulses for a few of days though as the flagyl still makes many of my old symptoms return on its own, and exercise only seems to make this worse.    Hopefully, soon, this won't be the case... @ last week of July... Just wanted to post a quick note about a bad reaction to Acetyl L-Carnitine in case my experience might help someone else identify a possible bad reaction to it... After reading several posts about how Acetyl L-Carnitine might help promote added energy and reduced brain-fog, and after experiencing a period with mild but annoying amounts of both of these, I decided to give it a try.   The supplementsii did seem to increase mental focus, but unfortunately, after two 500mg doses (@ 12 hours apart), I started noticing a worsening of my rosaceaii symptoms (much increased flushing and burning and some increase in rashes) along with a dull headache, sleep disturbances, heart palps and asthmai like lung congestion.   It lasted for the three days I continued to take the supplements and cleared up about a day after I stopped taking them (and tossed them in the trash to avoid any temptation to take them again!).   Aug '06 - (Month 8) @ 1st week of Aug... I agree that it's really hard to find rhyme or reason in the reaction levels Lee, at least where I'm at in treatment now (btw, I just realized I moved into month 7, yahoo!).   The pulse I took before this last one was a total breeze, with no reactions whatsoever, and I was starting to think I was over the hump and not going to see any new reactions during pulses.  Just to humble me though, my last pulse (M-F of last week) included reactions that started @ day 4 in the pulse, got better during day 5 and then worse again @  days 2 - 6 post pulse (mostly morning fatigue, IBSi symptoms and nagging cough for me this time).  Why I felt better on day 5 of the pulse and the first day after, I'll never know.   I didn't change my diet or supplement routine at all during this period. FYI, I also find that I personally get kind of moody and a whiney for lack of a better description when I get these type of reactions, and they make me personally start doubting my progress.  And even though I'm a firm believer that the cytokinei reactions resulting from Cpn infection and abxii treatment can cause changes in serotonin levels and cause these types of feelings (see cytokines and depression),  it's often hard to keep them in mind when I'm feeling, well kind of crappy and down.  My reactions seemed to get better by yesterday afternoon though, and I'm really feeling fine (actually great) again today (and am hoping to stay this way until my next pulse).  I am also happy to say using Jim's stock analogy, my overall progress is like a stock in a steady uptrend.   This includes a strong trend of higher highs and higher lows in the form of either actual pullbacks or plateaus, with the highs occuring between and just before flagyli pulses for me and the lows or plateaus occuring during and right after flagyl pulses.  If I look at it  from a longterm perspective (easier done when I'm feeling really good), I can see this trend strongly.   If I look at it from every little uptick or downtick (as I tend to do when I'm not feeling all that great) it's harder to see the trend... I think I'll go for a run this afternon to celebrate what I'm hoping is a victory in my last little battle with these little buggers, and get some endorphins to help mentally prepare for the next one.   On to new progress heights! Also was thrilled to find patient on early anti-chlamydial treatment (an older Vanderbilt protocol) who reported that treatment cleared up their rosacea: Sep'06 - (Month 8) @ 1st week of Sept... After noticing a continuous hacking cough, increased skin rashes, heartburn, a slight increase in stomach troubles and fatigue after my last couple of flagyli pulses (actually increasing with each of the last couple of pulses), I decided this might be due to some effects of yeasts brought on by the antibioticsi (although I've been taking a good probiotic regularly throughout treatment).    So, I decided to try taking Garden of Life Fungal Defense as I believe Astrodiana recommended. Itt contains mostly Oregano, something I was never able to take prior to starting NACi and abxii as it would cause me to flush like crazy.   Thankfully, as with many or really most of the other things that used to make me flush, it no longer seems to cause this problem.  Anyway, I took the Fungal Defense according to the directions on the bottle (1/2 dose for 2 days and then full dose for 13 days - while not taking my normal probiotics), and noticed it seemed to help with symptoms almost immediately (within the first day or two), but then I'm thinking it was about a week into taking the Fungal Defense, I got hit with a bout of really horrible stomach troubles (of the kind John has described and then some).   It lasted for several hours one evening and I felt weak the next day, but then recovered to finish out the 15 days on the product uneventfully. The hacking cough, increased skin rashes, heartburn, and a slight increase in stomach troubles and fatigue all seemed to have gone away nicely when I noticed a couple of days after completing the Fungal Defense that my rashes came back again, probably worse than they had been for several months, and I noticed some nasal congestion after my NAC doses which meant to me that it was now killing something again.  This continued for a week or so, and I kind of felt like I had taken a couple of steps back in treatment, so I decided after reading DW's page on NAC again to double my dose to the full 1200mg twice a day.   Although I've had transient congestion (for a couple hours after each NAC dose) for a week now after doubling the dose,  this seems to be subsiding now, and the extra NAC seemed to clear up my extra rashes almost overnight (definitely within the first couple of days).   I now seem to be doing better than ever.  Yahoo!!!! Although I will take the Fungal Defense again if I notice a return of symptoms, I'm hoping the extra NAC might help prevent this from happening again.   Based on my experience with the Fungal Defense seeming to cause a bit of a step back in progress, I don't want to take something like it regularly in case it really is hindering progress (it's hard to tell, but I hadn't experienced stuffiness after taking the lower dosage of NAC since early treatment).   For now, I'll stick with the probiotic and extra NAC. @ 2nd week of Sept... About a week ago I after completing a two week course of an antifungal and then feeling like I slipped backwards a bit in Cpn load (mostly because I noticed I was reacting to a twice a day 600mg dose of NACi again like I had earlier in treatment - when initially starting to take NAC and interestingly, now that I  think of it, right after some of my experimenting with things like artemisin, aspirin, etc), I decided to bump up my dose of NAC to 1200mg twice a day.    After a week of congestion from this increased dose, this seems to have mostly subsided now, and I'm having some of the same great, almost giddy/euphoric feelings of energy I had early on in treatment that I associated with starting to take GliSODin. I'm now wondering if this might be due to some combination of the NAC and GliSODin.   This morning, after a short (for me) but restful 7 hour sleep, I got up and had my verison of the breakfast of champions - you know, 1200mg NAC, 1000mg GliSODin, a probiotic capsule, two and a half mugs of coffee, and toasted whole wheat bagel with a strawberry jelly schmear.     As has been happening over the last several days on this dose, within a half hour, I transformed from the Couch Potatoe Wonder to CAPTAIN ANTIOXIDANTi.   I honestly had so much energy that I went for a run, did some house and yard work, paid some bills, and then called up some friends and nearly chatted their ears off, all before 11am!    I don't know about you, but this is unheard of for me.  As a child, I put the capital "H" in ADHD, but since I was a teenager, I've been much more likely to be associated with the 's' in sloth.    One of my friends who I obviously annoyed on the phone this morning even remarked that he'd like two of whatever I was on.   Hmmmm... It's weird, but I sure feel GOOD!   And my skin, stomach, and ache and pain problems seem to all be doing well too.    Let's hope this lasts.    I'd love to think that maybe I'm just regaining some energy and this is the way "normal people" might react to a couple of strong mugs of coffee - you know, getting a buzz from it instead of needing it just to get moving... Meanwhile,  I'll enjoy feeling like I can leap tall buildings in a single bound for as long as it lasts... Oct '06 - (Month 10) @ last week of Oct...  Continuing treatment with NAC (1200mg 2x a day), Doxy (200mg a day in single dose), Azith (250mg MWF), and GliSODin (1000mg a day in a single dose), and flagyl pulse (one 5 day course each month of 400mg 3x per day) and doing very well.    Most of my symptoms are now only evident on occasion at this point in treatment, and usually only after an additional die-off reaction due to abx, not being careful with diet (anti-porphyria), etc...   I'm very pleased.   One thing I've noticed since doubling the NAC is much decreased swelling, particularly in my face and neck, but really from head to toe.   My watch now slides easily up and down my wrist and my ankles appear to be much smaller than they were a few weeks ago.   Really, my all over body "puffiness" has been dramatically reduced, not that I realized I had all over body puffiness until it seemed to go away... After reading some posts about food decreasing effectiveness of antibiotics, I decided to try taking my evening dose of abx and NAC at least one hour before food.  I noticed a fairly good sized die-off reaction that seemed to culminate @ 3-4 days in with additional rash, some rosacea flushing and burning, nausea, dizzyness, and fatigue.   Now @ 1 week into this, the effects have subsided and I'm feeling great.   Extra rashes, etc have now gone away as well... I tried taking doxy and azith without food in early treatment, but I could not due to much more violent of the many of the ill effects mentioned above.    It seems that many of these ill effects from taking these abx on an empty stomach may be related to cpn load at least for me... Additional comment by Red: Submitted by Red on Thu, 2006-10-26 13:05. Thanks for the nice compliments and all your efforts Jim.   Thanks also to everyone in the cpnhelp community for all your help and support.   I'm very thankful for and proud of this community as well...At this point, although I still have a ways to go in treatment, I just can't explain how glad I am that I stumbled across the study linking Cpn and rosaceaii and then this site, where I have found such positive, supportive people who, even while treating their own illnesses, have always taken the time to cheer me along and answer my questions along the way.  If I were still feeling like I did last year or even worse, I'm not sure how I would have handled it.I put the rosacea chronicles together hoping to help other rosaceans in treatment in the future, particularly to help them (and those with other illnesses) get through the initial worsening of symptoms. As you can see in my chronicles (although sometimes you have to read between the lines or follow the tone), I often felt like total crap in early treatment, and even @ 5 months in I was still talking about worsening symptoms, depression and doubts during flagy pulses. CAP treatment is tough, and it's certainly not like traditional anti-inflammatory therapies where you often just start feeling better due to the anti-inflammatory effects, even while possibly allowing the infection to get worse by suppressing the immunei reaction with these anti-inflammatories. With CAP treatment, you are killing off the Cpn, not just suppressing your immune reaction to it, and you will feel at your worst if not actually worse before you feel better.  You may even recognize a few odd symptoms during treatment that you had not even associated with Cpn infection initially. Obviously the faster you go in treatment, the more Cpn you kill, the more endotoxinsi you release into your system, and the worse you will feel.   The answer to why during treatment you feel worse, then better, then worse, then better in a sometimes not all that apparent uphill climb to eventual good health, to use the popular phrase, is simply, "it's the endotoxins, stupid".    So IMHO, you really want to take your time and manage your reactions during slow and steady treatment.     When you start feeling a little better in early treatment, the natural tendency is to rush.   Hear me now and believe me later, resist this urge at all costs, and give yourself time to heal during  slow and steady treatment.   And when times are tough, reach out to the cpnhelp community for some support and reassurance and continue on in treatment, knowing that you will get better with time as others have done before you...Thanks again all.   Now as Jim says, let's get 'er done! On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06