MediTest
Submitted by van buren on Thu, 2008-07-03 16:11

Here's an update and a full account of my experience with CAP, which appears to have utterly cured my inflammatory bowel disease. My bowel symptoms completely disappeared as of November 2007. I'm continuing with CAP to ensure that all traces of Cpn have left me.

I first consulted a gastroenterologist in August 2005 when I developed rectal bleeding. I had had occasional indigestion and bowel symptoms for several years prior to that time, but never before had had rectal bleeding. A colonoscopy revealed "active chronic colitis", which my doctor interpreted as Crohn's disease. He prescribed a moderate dose of Asacol (600 mg), twice a day, warning me that I would have to continue to take it for the rest of my life. For a few weeks, my symptoms abated.

As bleeding recurred, my doctor first increased the dose of Asacol to 3000 mg twice a day, and finally by late 2006 added twice daily cortisol enemas (Rowasa). The high doses of Asacol gave me an almost constant mild headache. When these drugs were not completely successful, my doctor placed me on a 40 mg a day dose of prednisone in January 2007. The prednisone immediately relieved not only my bowel symptoms, but also my arthritis. For the first time in years, I felt in excellent health. As with all such prednisone treatments, however, doses must be gradually reduced and then eliminated entirely to avoid side effects. From February to mid-March, I ramped down and then stopped the prednisone.

In the meantime, my son Norman had been telling me about his experiences with CAP. Learning that Dr. Stratton had cured several cases of Crohn's disease, Norman's neurologist offered to prescribe CAP for me. I started in February 2007. I began with twice daily doses of 100 mg minocycline, along with most of the Wheldon supplements. While at first I couldn't tolerate azithromycin, I began to take it three days a week starting in early March. In April, I added 1200 mg of NAC twice a day.

As I decreased the prednisone, my arthritis gradually reappeared. By mid February, I was experiencing flu-like symptoms with a loss of energy and nasal congestion. My sleep, which for years had been often interrupted by restless leg symptoms, improved as the prednisone was decreased. On April 11, I started with just one 500 mg metronidazole pill. By the 13th, I had a strange rash on my lower right leg consisting of a dozen red itchy spots, and my arthritis was worse. This rash reappeared as I started a full pulse of metronidazole on the 18th. My energy level decreased, and I was irritable and not sleeping well. I experienced irregular heartbeats, and had a foul taste in my mouth most of the time.

It took a couple of weeks for the rash to disappear, and it recurred with the second full pulse I started on May 9th. Again, it took well over a week for the rash to go away.

Looking over the various ways that cpn can infect the body, I remembered that I had been diagnosed twenty years or so ago with rosacea. In my late teens, I had had "walking pneumonia", which had left me very weak. My arthritis had been appearing in my finger joints, I had had "degenerative arthritis" in my jaw and a resultant TMJ operation in the late 1980s. My soles of my feet always pained me for several minutes each morning as I got out of bed. I am guessing that cpn has invaded several organs of my body.

By mid May, the rectal bleeding recurred. I took more Asacol and Rowasa. By June, my rectal bleeding was more intense, and my energy levels dropped. The rash returned. Following a third pulse of metronidazole in mid-June, the bleeding stopped, only to reappear after several days. By early July, I saw a second gastroenerologist, who performed a biopsy and diagnosed my symptoms as ulcerative colitis. He agreed to work closely with the neurologist who was monitoring my CAP treatment. He prescribed a moderate dose of Asacol three times a day. I continued with CAP, taking another pulse in mid July, following which my bleeding recurred. My doctor's prescription of sulfasalazine left me nauseated. In early August he prescribed Colacort enemas, which worked for a time.

In early September, I started a fifth pulse of metronidazole. The following week, my bowel problems reappeared, accompanied by increasing gas pains. With a sixth pulse in early October, the bleeding started to abate, and my energy levels were very low while my arthritis appeared more troublesome. During the fall, my restless leg symptoms had increased. From July on, I had found that substituting Ensure for a meal was the only way to get through the day. I started a seventh pulse in late October, with no sign of improvement.

Typically, I reacted to a pulse only a few days after I had completed it. Stopping the minocyclin and azithromycin for several days had no effect on my symptoms.

Suddenly, in early November, my bowel improved radically. I had taken Colocort enemas occasionally, and my arthritis was improving. In late November and again in mid December I took my eighth and ninth pulses. By the end of 2007, I was feeling in good health, with no bowel troubles at all. I began to lose weight slightly. At that point, my neurologist reported that my liver function tested as high. I stopped the pulses but continued the minocycline and the three-times-a-week azithromycin.

At the same time, I decided to start reducing the amount of Asacol I was taking. I was able gradually to cut back from 3000 mg to zero by the beginning of March, without experiencing a moment of bowel trouble. By April, once my liver function tests returned to normal, I started my tenth pulse, with the return of the rash over much of my body a week later.

I have had an eleventh pulse in May and a twelfth in June, now not followed by any rash, and with steady improvements in many of my arthritis symptoms. My sleep has improved radically. There has been no upset bowel or rectal bleeding since November. This week I have started taking niacin, and am experiencing flushing. Despite this, I now feel very healthy.

I would encourage anyone experiencing ulcerative colitis or Crohn's disease to try CAP. It is an extraordinary relief to me to feel in good health.

Sue

Wonderful news. I can truly relate . My two children, ages 26 and 24 have both in the past been treated for ulcerative colitis with the profound help ot an immunologist(my miracle doctor) - still unrecognized in the field of gastrology, etc. They were seemingly cured. I still worry - prob. always will even though we  all know worry is a waste of time.Refloristation was name of the game back then - antibiotics and strain of good bacteria cultured in Germany, etc. etc. were involved.

Wheldon protocol  is prob. in background for me and why I chose it for myself with the hopes of arresting diagnosis of ms-lyme disease and thereby stopping progression. Refloristation worked for my kids so Dr. Wheldon's protocol for me??? I do wish I would have known about it before. Disease progressed all along with loads of stress as well as numerous injections a few years worth didn't help but it seemed hindered. Who knows?

Still praying and your fabulous news of IBD arrest help me to keep that hope.

Loulou

 

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

doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

Well done Sue. It's always encouraging for us to hear of such success on here and your report clearly documents your journey to health. I think this deserves gold stars all around.

speedbird

Great news Sue. I'm going to link this to the Patient Stories as it's the first specific IBD report, and I think it will aid people looking for help in this condition see that a CAP might be a useful approach to try. I'm so glad you have found such (relatively) quick relief.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Sue- Congratulations!  This is wonderful news! 

How long do you are you considering continuing on with CAP to make sure the infection is fully eradicated?  Just curious!

I have several friends with IBD and am excited to email them your post!

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Sue, this is wonderful! If you can , please let us know the state of your arthritis. As I wrote in my blog, mine disappeared the way your primary complaint did. Your story and mine are very, very similar that way. My arthritis is still gone - it was becoming terrible, and, like your IBS, would come back during flagyl. I had no idea it was going to go away. I am really happy for you and the others who have not yet come, but will.

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Another success story.   Well done Sue.   I'm hoping to follow in your footsteps one day.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I want to get tested for cp, but i live  they dont have the test available.  They keep giving me test for chlaymaia as a STD.  and another doctor wants me to see a psycalogiest.  Any body know what should i do.  Thanks.

 

Welcome, afshin

Explain (again) that there are MANY chlamydias and that this is NOT the STD.  I don't know if you have done some basic reading yet, but I will point out to you that 70% of people carry this bug.  That is amazing.  You are not alone in the doubt - most of us have stories like that.   Those who have not been where we are simply cannot understand.

If possible, begin the supplements, which will help prepare your body for this.  Then keep working on acquiring the antibiotics.  Have you done the NAC test?  I have been at this for almost six years and wasn't tested, but it has paid enormously for me.

If you begin your own blog, it will be your own storybook and we will be able to reply more directly.

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

As a followup to this, not too long after posting the lead post in this thread, my mother had another relapse, and decided she'd go back to conventional medicine on this one, and also try probiotics (stopping antibiotics in order to do so). I didn't object. For one thing, at the start of antibiotic treatment, she'd been having the typical sort of reactions which indicate killing of Cpn -- in the lungs, for instance -- but those had long since abated and become insignificant. This is consistent with having a mild Cpn load, which wasn't causing her main problems, and which got eradicated.

Another reason for not objecting was that there are two classifications of inflammatory bowel disease: Crohn's disease and ulcerative colitis. Of the two, Crohn's seems more clearly an infection: there are foci of disease (granulomas) in the intestinal wall; the disease sometimes spreads out of the intestine; and there is even a strain of chlamydiae which, if it infects the rectum, can cause lesions similar enough to Crohn's disease that the two can be confused. It's also the one which is correlated with having brain white matter abnormalities similar to those seen in multiple sclerosis. But that's not the sort of inflammatory bowel disease that she was diagnosed with; instead it's the other, ulcerative colitis. The various things I've read about ulcerative colitis make it seem more like a dysbiosis: intestinal flora getting out of whack. In any case, although she doesn't regret trying antibiotics, it wasn't the cure that it initially seemed to be, at least not for the bowel disease.

Norman, I fully agree with you on this: DW, apart from his heart and circulatory problems was very plagued by intestinal lesions, which were operated on but reoccurred.  They completely vanished with CAP, and have never reoccurred, but his Cpn load was higher than that of your mother, who I hope is now doing well.........................SarahAvenues of Sight
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.