What follows is an interview with a physician who has significant expertise in treating Cpn who has closely followed the Vanderbilt research over the years. He has garnered a lot of clinical experience, and his insights provide a lot of information both for patients and physicians who are looking to treat for Cpn. He prefers to remain anonymous. We’ll call him Dr. A for this interview. Testing for Cpn JimK- So what about serological testing for Cpn? Dr. A-Testing for Cpn is only useful if you get a positive result. Because Cpn is an intracellular pathogen, PCR testing may be negative unless infected cells containing the DNA of the organism are directly tested. That is a problem for any PCR or antigen forms of testing. Serological testing has two problems. The first is that by middle age, most people have been exposed to Cpn and will have IgG titers against this organism. If you are exposed and have a positive titer, then you most likely have a persistent infection somewhere, but this infection may not be causing symptoms. Thus, a positive serological test cannot distinguish asymptomatic persons from symptomatic persons. The second problem is that even persons with culture-proven Cpn in their coronary arteries only had a 35% positive rate by serological testing in a study done in Germany. The most sensitive test appears to be reverse transcriptase PCR testing for messenger RNA produced by infected cells. This testing, for example, showed 18.5% of blood donors to have messenger RNA from Cpn in their peripheral blood mononuclear cells. JIMK- So there’s no easy way to test for the intracellular phase of Cpn? Dr. A- It’s very difficult to test for the intracellular phase because the organism isn’t readily available to be tested unless you have infected cells to be tested. Testing for messenger RNA from infected cells appears to be the most sensitive method. However, this method is not commercially available. JIMK- So PCR is just the most sensitive test for detecting DNA or RNA floating around in the serum or tissues. Dr. A- If you test for antibodies you are testing for the response of the patient. If you test with PCR you are testing for DNA or RNA from the actual organism. JIMK- You have said that they are useful if they are positive, but not particularly useful if they are negative. Dr. A- Right JIMK- That’s when you might decide to do an empirical course of treatment or something? Dr. A- Exactly. Empirical Diagnosis JIMK- When you make a medical judgment on that, is it based on the disease? Are there also sets of symptoms you might be looking at? In David Wheldon’s web site, he refers to history of respiratory illness. Are there other useful indicators? Dr. A- The problem is that there are no symptoms that will hone in specifically on chronic Cpn infection. So if you have a suspicion, based on symptoms or the disease process, you begin with serology. And if you have positive serology then you may feel you have something to treat. If you don’t have positive serology and you are still convinced that Cpn is causing infection, then my approach would be to try a combination antibiotic protocol empirically, and if the patient has the side effects seen with the so-called “die-off” effect, such as those David Wheldon has described in his WebSite (Ed: these reactions typical of endotoxaemia include fever, chills, sweating, and muscle pains, coryza, widespread arthralgia and myalgia, and temporary worsening of neurological symptoms) then they may well have a Cpn infection. Once you treat for Cpn infection, all these side effects eventually go away! JIMK- What about Borrellia that creates similar side affects when treated with metronidazole? Any way to distinguish based on symptoms? I suggested to one person that porphyria might be a distinguishing factor, any others?) Dr. A- Metronidazole shouldn’t cause these effects, as it has no activity against Borrellia. It is probably killing Cpn. (Ed. Actually, this is not accurate. Dr. A does not treat Borrellia and was at this time unfamiliar with the way Flagyl is active against the cystic form of Borrellia- see Brorson & Brorson 2004, 1999. In I have been told that some Lyme doctors are using Wheldon's protocol as a primary Lyme Disease treatment. It is true that co-infection of Lyme and Cpn may be an unsuspected complication). Length of Treatment JIMK- I’ll tell you, it seems it can take quite a while… Dr. A- It can take years, much as the initial treatment for tuberculosis did. It’s just like treating tuberculosis in that it takes many months to years of combination therapy. JIMK- It Seems like people respond faster or slower. Dr. A- People respond at different rates, which probably has to do with how much Cpn they have, what tissues are infected, and how good their immune system is. JIMK- Supposedly, you’re recovering your immune system function over time from disinfecting the monocytes and macrophages. It seems, just from being on it myself for 10-11 months that different tissues get reached at different times. Also, that different agents reach different tissues. When I added amoxicillin to the doxy/zith/tinadazole I got a big flare up in body areas I had not had pain in for a while. It surprised me how much additional effect I had, since I’d been on antibiotics so long. That’s one of the questions I had. The different protocols use different combinations of antibiotics. Do you find different effectiveness in different antibiotics, or is it more a practical matter of what’s available? Dr. A- I think there are differences in tissue penetration, as well as a lot of other factors that aren’t yet clear. Choice of antibiotics JIMK Do you just tend to have a preference starting with certain antibiotic with a patient? Dr. A- I’m pretty pragmatic and generally use the least expensive and safest antibiotics. I start them on: doxycyccline (Dr. A will attend to patient reaction and have them work up to 100mg twice a day over longer or shorter period, depending on tolerance with any of these medicines), and then I add azithromycin 250 mg working up to once per day Monday/Wednesday/Friday, I work up to 500 mg twice a day for metronidazole. I’ll finally add 300 mg twice a day of Rifamcin to that. But I may start out working up to 500 mg twice a day of amoxicillin rather than doxycycline. JIMK you start out with that because it’s the easiest on the patient? Dr. A- It’s cheap, safe, and tolerated the best. Then after a month or two add the azithromycin Monday/Wednesday/Friday for a month, then the doxycycline, see how they do on all three. I’ve generally added the metronidazole into this and see how they do. I wouldn’t mind pulsing it as David Wheldon does in his protocol (Ed. This is a reference to the Wheldon protocol’s method of pulsing the metronidazole for 5 days every 3 weeks). By pulsing, you can give them time to recover from the side effects. JIMK- But it sounds like you used to give the metronidazole as a constant, then? Dr. A- Yes, that’s generally how I proceed. JIMK- That’s one drug, the metronidazole, that I had the hardest time tolerating. Dr. A- You think that one’s tough, wait until you get to the Rifamcin! JIMK- That’s one my doctor isn’t real enthused about giving me (the Rifamcin). Not sure exactly why. Dr. A- Well, most physicians aren’t familiar with it unless they’ve treated TB. JIMK- Do you think the Rifamcin is a necessary one for this protocol? Dr. A- Let me tell you what Rifamcin specifically does. When chlamydial EB’s germinate and transform into the RB’s, which is the replicating form, the first enzyme out of the EB’s is DNA-dependent-RNA-polymerase that Rifamcin specifically blocks. EB’s are like spore-like infectious form of Cpn. The cryptic form is also different to treat; it is metabolizing but is not replicating (Ed. The cryptic form is what the metronidazole is directed at, since it is metabolizing but in an anaerobic mode. Our expert is noting here that the EB’s are not metabolizing nor replicating, therefore are not affected by antibiotics that interfere either with bacterial metabolism or with bacterial replication. They are effected only by disulphide reducing agents, like amoxicillin, which breaks the disulphide latice bonds of the EB cell membrane). If you have a large EB load you’re going to keep getting cells reinfected. If you stop them before they start, that’s much better than letting them get started and then trying to kill them. JIMK- So doxy/zith is inhibiting the replicating form? Dr. A- Yes. Remember, you are trying to formulate a combination therapy that attacks all of the potential forms of Cpn. And so, N-formyl-penicillamine, which amoxicillin is metabolized to in the body, destroys the EB. It is these spore-like, non-replicating, EB’s, which invade your body’s cells and once inside transform into RB’s capable of replicating. In this transformation the first enzyme employed is DNA-dependent-RNA-polymerase, which allow this transformation. If they are in the RB replicating form, then azithromycin and doxycycline will interfere with that. If they are in cryptic form then metronidazole goes after that. If they are EB’s the amoxicillin takes care of that. If they are transforming from EB’s to RB’s, where they are particularly vulnerable, Rifamcin takes care of that. It takes a lot of different antibiotics because there are lots of different life forms. Otherwise it just goes from one life form to the next. JIMK- So, adding the Rifamcin is to be as complete as possible? Dr. A- It is hard to say if you can get by without the amoxicillan, or the Rifamcin. I suspect that you can in younger healthy persons. I tend to think that they are especially important for those who have been sick for a long time, and likely have a lot of EB’s looking for homes. I want to destroy these EB’s (amoxicillin) or if they are finding homes I want to short-circuit them (Rifamcin). The transformation from EB to RB is where they are particularly vulnerable. JIMK- That is really important information to get out there. Especially for those of us who have, indeed, been sick with this for a long time. I knew when I added the amoxicillin to the Wheldon protocol that I was killing something additional. And it was so clearly, highly inflammatory too; by the amount of pain and inflammation I had in reaction to it. Dr. A- You probably have a high EB load. Those were probably Elementary Bodies that you were destroying. By the way, you can use penicilamine directly, but that’s a very scary drug. JIMK- And that tends to dump a big load of the endotoxin when they get popped? Dr. A- That and a lot of other antigens. The response to the antigens is somewhat dependent on your body’s immune system. JIMK- So you’re getting a cytokine reaction. Dr. A- Yes. JIMK- Do you find tinidazole as effective as metronidazole? Dr. A- I don’t see why it wouldn’t be. It’s just been recently approved in the US, so I have no experience with it, or what they are charging for it! JIMK- I find I tolerate it much better than metronidazole. I got so sick on that, which I believe is more a drug side effect than a kill effect. Dr. A- Well, I wouldn’t necessarily see it that way. My experience is that people who don’t have any Cpn organisms can tolerate metronidazole without any side effects. You’re talking to someone who has had patients taking metronidazole as a post treatment preventative for a number of years without side effects. JIMK- So your bet then would be that I got sick from the metronidazole because it was killing cryptic Cpn, not because of drug side effects (Ed. which would suggest that tinidazole is not as potent in this as metronidazole). Dr. A- There are two explanations as to why you are tolerating tinidazole better. One is that you just knocked down enough of your Cpn load with the earlier metronidazole pulses. And people have done that; they say they can’t tolerate the metronidazole and then after a time they can. The other is that you were getting better penetration with the metronidazole than with the tinidazole. JIMK- So it may be that the tinidazole is not quite as strong, so it may be a good way to gear up over time to the metronidazole. Dr. A- Yes, but if you were to try metronidazole for a couple weeks and you didn’t get any side effects, then you probably don’t have much Cpn. Brain Fog JIMK- You see brain fog a lot in Cpn patients; do you see this as CNS involvement or more as an effect of endotoxin? Dr. A- It is most likely a combination of endotoxins, porphyrins, and cytokines. It may largely be porphyrins for the simple reason that reactions from porphyrins last longer than those from cytokines and there’s no fever. And you know you are better when…? JIMK- So that’s the kind of “gold standard” test: that you can take metronidazole and not get hammered? Dr. A- And Rifamcin. Rifamcin has deep tissue penetration too. So if you can tolerate the metronidazole and then I challenge you with Rifamcin and you tolerate that as well, you have very few Cpn left. I periodically challenge patients with a short course containing metronidazole and Rifamcin to see if they continue to be cleared of Cpn. JIMK- The complete challenge. The more I understand, the more I appreciate how tough a bug this is, and long it takes to get it, how complex it is, and all the tissues you need to penetrate to get there. Dr. A- Not only the tissue penetration, but also both the organism and your cells have active efflux pumping mechanisms to pump out the antibiotic. You have to work against these natural mechanisms to keep adequate concentrations in the cells. Rifamcin tends to inhibit these efflux pumps. I also use another drug, Quercetin, a bioflavonoid that also acts as a cell efflux inhibiter. It works on a different efflux pump than Rifamcin. It’s, also active against Chlamydia on it’s own. JIMK- Plus Quercetin is also an anti-inflammatory and free radical quencher. Dr. A- But the antichlamydial effect may be more important than it’s anti-inflammatory effect. JIMK- How much Quercetin do you use a day—I tend to take three caps with the bromelain. Dr. A- I tend to use 2 caps a day containing 500 mg of Quercetin along with vitamin C. Differences in treating different diseases? JIMK- Do you see differences in treatment based on disease entity, or more on the person. Dr. A- That’s hard to say. My generalization is that: the longer the person’s been sick and the sicker the person has been, the more problematic the therapy is going to be. In addition, the older the person is, the more likely that they’ve had a Cpn load building for a long time without knowing it. Their ability to tolerate treatment can be low, both from the high Cpn load, and from an aging immune system. On the other hand, I know of a young patient who had a very strong family history of cardiac disease. For this reason, his doctor placed him on the regimen. He had very few reactions. He was in his early 30’s. JIMK- He had some reactions, which let you know that he had some Cpn building. Dr. A- Yes. JIMK- I know in my family there’s both cardiac disease and Alzheimer’s, and another sibling has fibromyalgia. So there may be a common link genetically that is more about the susceptibility to Cpn. Dr. A- AOE4 probably has a place in Cardiac disease, Alzheimer’s and MS. I’ve observed that the recent memory problems that come with brain fog for patients can really lift once the Chlamydia is gone, even in those 50 or more. Porphyria JIMK- On the porphyrin stuff- do you think the porphyrin testing is worthwhile, or do you just assume it and treat for it anyway when you are treating for Cpn? Dr. A- The trouble is that you really have to test for the fat soluble porphyrins to get the best data, and that involves a 24-hour stool test, and you have to freeze that sample and so on. You need a 24-hour urine to look for water-soluble porphyrins. There is a poor man’s way to check for porphyrins. It seems that if you have porphyrins, you will have an increased hemoglobin level, on the high end of normal on most CBC’s. JIMK- when I was first treated I was very low on iron, which I understand is heavily used by chlamydial metabolism. Would that make a problem for using hemoglobin’s as an indicator of porphyrins? Dr. A- Initially, low iron would mask the increased hemoglobin you would expect with porphyrins. Once your iron levels are normal, it would no longer mask the elevated hemoglobin. But in general, a high-normal hemoglobin and high-normal hematocrit are both good indicators of porphyrins. JIMK- I can’t tell you how unusual it is to speak to a physician who sees it his or her job to actually investigate and reason out what’s going on in a patient, rather than look to see which already-known-box to put them in. I spoke to David Wheldon about that and he said, “Yes, I know, if I’d listened to those doctors I would be a widower now.” Kind of put home the point.
Quantity of bacteria built up in body tissues.
Although focused on respiratory disease, this slide show provides and excellent summary of Cpn in general, and why combination antibiotic therapy is so important. Click This Link for a powerpoint presentation by Charles Stratton on Cpn. It includes great pictures of the organism at different life phases, and links Cpn various diseases.Download a .pdf file of the slide show, thanks to Red (!) CLICK HERE
I am very excited to present the following article that summarizes Dr. Stratton's recent observations on Chlamydia pneumoniae infection. Putting it together has contributed greatly to my own understanding of Cpn as well as to my appreciation of Dr. Stratton's generosity with his time, and his great depth of knowledge of this area. Thanks to him for his contribution. Jim K Recent observations by Dr Recent observations by Dr. Charles Stratton on Chlamydia Pneumoniae (Cpn) Infection
This has to be the most thorough story written yet. There's a lot to learn from Raven's detailed journey. Her story will see you through the whole range of symptoms and struggle and success.
Wobbling through Purgatory
Three long years of suffering and it is time to look back. I had always treated my body as if it was immortal. It was a foolish attitude but probably born of a harsh childhood and my will to survive. So the sudden embrace of disease and disability was quite a shock to me.It was late spring 2002 and I had just returned from hiking in the desert canyons. Despite the heat, I enjoyed clambering through the palms and almost dried up streams while taking photos. I returned home to an intense work schedule.I had been working many hours and not eating properly. I was entering menopause and had problems with night sweats and insomnia. Although I was constantly sleep deprived, I was terrified of taking hormone replacement because of all the bad press. Instead, I turned to soy supplements that seemed to help a little.I had constant problems with sinus infections and every spring would come down with bronchitis that would take months to resolve.I was at the end of a long stretch of work that was finally completed. That weekend, I felt a type of fatigue that I had never experienced before. I remember being at an engagement party and having to lean on a kitchen counter. The next day I was sitting in bed watching television when a small brown spider crawled on my arm and bit me. I killed it instantly and didn’t think much about it.The next morning as I was running water in the bath, the sound of the water hurt my ears. Crumpling a paper bag was excruciatingly painful to hear. The top of my hand felt numb.Later in the week, I had a series of short, sweaty fevers and the numbness crept up my arm into my head and neck.A few days later, I developed double vision.The first doctor I saw thought it was a pinched nerve in my neck but later sent me to a neurologist. I was set adrift on a long journey through a confusing maze of medical practitioners who seemed to know almost nothing about what ailed me. I had entered the realm of an earthly purgatory and suffering became my daily mantra.My first neurologist was an elderly man who seemed serenely out of touch with the times. Although his office staff used computers, there was not one to be seen in his office. He gave me the routine exam and didn’t have any answers for me. After my first MRI showed a small spot on the pons area all he could say was that it was some kind of inflammation. He had a visual evoked potential test done that came out slightly abnormal. At this time I was still seeing double.He told me about spinal taps and said I could wait and see if things resolved. I became impatient and went to a university MS center for another opinion. I had a spinal tap done and they could find nothing in the CSF that indicated MS. So I went home and began researching on the Net.The first thing I changed was my diet. Regular healthy meals became a requirement as well as many supplements I had read about. I ate the things I had cravings for and slept as much as possible. Sleep seemed to be the only escape from the pain and sensory distortions. I began to do Yoga and my attitude to work went through a paradigm shift. I let go of having to do so many things just right and adopted a “So what” attitude. My stress levels dropped.I would have good weeks and some not so good ones. My subsequent MRI revealed that the spot was healing. In the early spring of 2004, I again felt very fatigued. I disregarded this and did some gardening in the sun—it was a hot day and it felt good to sweat and do some physical labor.The next day, I thought I had an intestinal flu. After the gastric disturbance I came down with bronchitis. After three days, I felt burning pain in my head with intense buzzing. Then a massive wall of fatigue descended that lasted for months. I went back to the old neurologist for another MRI. This time, it was a spot on the cerebellum—very close to the original area on the pons.Back I went to the university MS doctor. His shocking pronouncement was that I didn’t have MS because my MRI did not look like someone’s with MS. He took me to an adjoining room and showed me the films of other patients. They had lots of white spots all over the brain. He thought I had a stroke and sent me for a scan of the carotid artery. It was unremarkable with some mild to moderate narrowing.In my attempt to minimize the whole situation, I wanted to believe him. Wasn’t a stroke better than a serious degenerative disease?But my mind would not rest. I could not reconcile my symptoms with stroke symptoms. I went over it all time and again. Something else was going on.I made an appointment at another university MS center. I had to wait many months for an appointment. After looking at my case, the doctor told me she thought it was MS. She suggested I go on Copaxone and gave me a flashy promotional kit for the drug. I went home to consider it. I spent the rest of the day in a fog of despair.I never called the toll-free number on the package. Something was nagging me.I read everything I could about the drug on the Net and it didn’t sound like it did anything. There had to be something I was overlooking. I sat down at my computer and Googled “MS and Infection” and found David Wheldon’s site.Reading his clear and direct account of his wife Sarah’s illness was like having a big game fish on my line. I had made a big hit on information that sounded so familiar and true. I sent him an email and asked if he knew a doctor in the U.S. who was knowledgeable about the Vanderbilt protocol for chlamydia pneumoniae.He put me in touch with a Dr. Powell in Sacramento. It was a long trip of hundreds of miles but I could take a plane. For the first time, I had some hope that I could be well and healthy again. But I soon found out that the road out of the inferno is long and hard.In between the two university MS specialists, I had many tests for endocrine functions and one for Lyme disease. The only finds were an elevated cortisol level and a raised level of Anti Nuclear Antibodies (ANA). I was tested for Lupus but those tests came back negative.After developing pain in my legs that kept me awake at night, I was given a prescription for Neurontin. I soon became severely hypoglycemic, depressed and suicidal. I did not want to get out of bed. Strangely, the endocrinologist I saw didn’t think I had low blood sugar from looking at my fasting blood sugar test, but I had to eat something every hour and a half to keep from shaking like a leaf.I saw a rheumatologist who thought I had Fibromyalgia. He spent hours with me talking about how to relax and de-stress and then sold me a relaxation CD. He told me to go home and exercise. I tried to work out on my treadmill and do Yoga. The hill I used to walk near my house was too much for me. After I would exercise, I would collapse with exhaustion for a day. After 5 or 6 months without the Neurontin, my blood sugar returned to normal.There was something vascular going on as well. Sometimes my heart would race for no reason. I broke out in tiny red spots that were broken blood vessels. My skin looked grey and lackluster. Sleep problems left me with grey circles under my eyes.I found myself holding my breath and not breathing properly. And my fingernails began to look strange. Where the nail meets the nail bed used to be clear and straight, now it was crooked with valleys and peaks. There was a red tinge to the nail bed nearest the fingertip and the moons had all disappeared except for the thumbs. When my symptoms would flare, the redness became more pronounced.I later read on a site created by a woman who suffered from pernicious anemia that her moons in the nails would disappear about the time she needed a B12 shot. Now that I am taking B12, the moons are beginning to show in a few of the fingers. Why is this so significant to me? I had always had very nice strong nails. I never bothered to polish them because they looked so good. I found a picture of me showing my hands from '93 and they were perfect then with prominent moons. The nails are an excellent indicator on the health of the body.Fast Forward to the Present....Now I am on the Vanderbilt therapy for Cpn. I began taking antibiotics in August '05 but the full treatment cycle really began in September. I have had many of the symptoms we all talk about. The first pulse of Flagyl was not too bad; the second one was so bad I could only stand 2 days. The third was fine until the very end and then I fell off the edge of the world---stumbling around in pain for a couple of days.I'm always afraid that I am having a relapse when this occurs. It is so hard to calm the mind. What helps is to read and re-read all the information I have printed. This gives me courage to keep going.I am going to begin seriously studying meditation. I recently read about a group of researchers at Massachusetts General Hospital who did a study on 20 people who did meditation for an average of 9 years. They did MRI studies that showed an increased thickness of the insula, a region responsible for integrating thoughts and emotions. Most of the thickening was in an area of the right prefrontal cortex that is dedicated to attention and memory. Those in the study who did Yoga in addition to meditation had even greater brain thickness.Wobbling Thorough Purgatory: Meeting With DemonsNot too far down the difficult path comes a meeting with the twin demons Pain and Fear. Pain is the first to attack. It wraps spiny fingers around my body and clamps down. Fear envelopes like a frigid toxic fog making it impossible to see the road ahead. It is easy to stumble and fall and not want to go on. But these are wraiths that can be beaten off with time and the spirit of Hope. When they depart, I am again sure that I have a steady foothold on the right path.The world we are all so sure of is crumbling around us. Many long held scientific views are now being challenged. We are in for a paradigm shift in the way we treat chronic illnesses. I see the signs all around. I keep a mental notebook of others who are aware of this shift. There are clues everywhere. This is what keeps me on this road. And I am grateful for the support of my fellow travelers on this site.As for my progress, I finished a 4th Flagyl pulse around Nov 26th and had severe reactions such as muscle pain and twitching, fever,lack of coordination and brain fog. My feet and legs seem to be more affected than before with soreness in the large muscles. My energy has been good except for those days when I am really suffering. Just finished 5 days of Flagyl--the 5th pulse. I only encountered one day a few days after I was finished that was painful.What has improved? I can walk on the treadmill for a mile with a slight incline without collapsing the next day and staying in bed. I am sleeping very well and dreaming again.A spot of eczema on my elbow is gone. My brain seems to be sharper with spelling and typing. I have had longer periods of time with more energy and less pain in December. And everyone around me was sick and I did not catch whatever was being passed around. To battle the twin demons, I began meditating and journaling. This is a stressful journey that needs to be supported in any way possible. Pain may come out of our bodies but Fear comes out of our minds. And we can change our thoughts.Wobbling Through Purgatory: A Window of SunshineJust when the trip down the road to recovery seems arduous and the mind is resigned to perseverance, there is an opening in the dark clouds and a window of sun beams down on the path. After a cold stormy weekend, the warm weather blew in with the Santa Ana winds.I began to feel a lightness and wellness that I haven't felt in a very long time. A few days ago, I walked the two hills down to the beach and back---about 2 miles. I haven't been able to do this for a year and a half. The hills are very steep and long. I didn't have to stop to catch my breath. My muscles didn't ache and burn nor were my joints sore. After that, I cleaned up the garden debris from the storm and went out to dinner with friends. I didn't get home until after midnight. The next day I felt tired and noticed ringing in my head. This is a signal that I am about to be visited by a toxin release. Took charcoal and about 6 grams of C over the course of the afternoon. I also tried deep Yoga breathing--this is very cleansing. There are many kinds of Yoga breathing but just deep belly breathing seems to clear out toxins and calm anxiety. This morning I feel good and did my usual meditation and Yoga practice. I felt stronger as I went through the poses.Been Down This Road BeforeTreatment time is like travel time---it seems like you will travel on forever and then you arrive at a new destination that is much like the last place you visited. It's only different in many ways. Just finished my 6th round of Flagyl and did not escape the misery it brings. Charcoal, my Sooty Friend, is the thing to take mid-morning, mid-afternoon and evening. But fitting it in between food and supplements is sometimes hard. I have to keep reminding myself of what it does and how valuable it is. Talked to my tour director Dr. Powell by phone and he told me to get some Niacin as well as B5 and B6. (And the hilariously named Horny Goat Weed as well.) I had a hard time remembering what that does. I wrote it down but brain fog is buzzing in my head lately. I took some time to read the web site that Ines Neihaus put up about her encounter with Salmonella endotoxin. http://www.endotoxin.gmxhome.de/artikel3.html Although I don't understand a lot of the science, her tale of suffering was woefully familiar to me. At this point, I wonder if I will always have residual damage even after the infection is gone. It seems like it is almost impossible to kill it all. And what about re-infection? I guess I should just be grateful that I have had some bright days in the month of January. The good traveler stays in the "now" and appreciates what each day brings and suffers the strain of the journey one day at time. I read Eckhart Tolle's book "The Power of Now" over the holidays and I am just starting his new book "A New Earth". He is a good traveling companion and his wisdom keeps me grounded on the path while lifting my spirit.Eight Months on the RoadLearning the ways of the road is hard. I realize there were things I neglected in my treatment that could have saved me from the suffering of the last few months. But I was facing a very demanding work schedule and I was in survival mode. In spite of how bad I felt, here I am at eight months of treatment feeling not too bad. My typing is fast with mistakes (as it has always been). I can read and comprehend well. I am sleeping very well. My body temp actually came up to 98.6 last week. Today I began another round of Flagyl. Will have to remember to take my charcoal 3 times a day. Still have pain in head and face muscles, shoulders and back. Nerve pain seems to have died down. Wobbling when walking is gone. I am posting a chart I made from my calendar notations. You will be able to see all the ups and downs. Even had a few stellar good days. Carry on! Better days ahead.The B12 ExperimentMy last pulse of Flagyl produced some bad episodes of secondary porphyria. I was a mess for at least ten days. I had not been keeping up with my B12 shots (only the sublinguals) so this time I made it a point (ouch! no pun intended) to inject 3cc's of B12 every other day during the pulse and for 3 days after. Also took lots of sublingual 5,000 mg Methylcobalamin in between. I came out with a few endotoxin attacks (mostly mild--took lots of C) and nothing much in the way of the porphyria I suffered last month. I had to learn from this. I don't have a good tolerance for injections--I sometimes get big bruises. So I was reluctant to do this but it was worth it.Rambling Through Purgatory: At The End of AprilStress and recovery are the important themes that run through the last few months.I was warned to take it easy but alas I have a demanding job that at times extracts all the energy I can give it. I am ready for a break and it's coming soon.March was full of suffering and cold. I think it was secondary porphyria that really got to me. April seemed to bring some relief. I actually marked more good days on my calendar than bad. I felt good enough to go on some hikes in the desert when the temps were in the high 90's. (In the early morning of course!)I stopped wobbling when I walked fast. I thought it would last. Silly me. The last Flagyl pulse brought back pain and fogginess. An old headache that only affects one side of my head reappeared briefly as well as some nerve pain.But I am still sleeping very well. My restless legs are history. My eyes don't hurt. The joint pain is gone. My feet don't hurt on the bottom (that was a symptom for a couple of months that I hated--it slowed me down). My typing speed has improved even if I do feel somewhat foggy at times.My upper respiratory symptoms are the same--lots of build up of mucus in my nose--I suspect it's the NAC. However, my chronic cough is gone along with the yellow phlegm I used to cough up every morning. I'm thinking of sending some Cpn information to the pulmonary doctor I saw who couldn't figure out why I had a constant cough, wheezing and sleep disturbances. (He also treats sleep disturbances).So here I am at eight months of the full treatment. I marvel at the amount of energy I have regained. I was accustomed to coming home from work and going to bed right away to rest up for the next day. I just have to be careful now that I don't push myself. I have a long vacation coming soon.For those who don't recall, I have had several conflicting opinions from various specialists that range from MS, Chronic Fatigue and Fibromyalgia or a combination of these. As far as I am concerned it's all Cpn (and also it's dark cousin Mycoplasma Pneumoniae) I tested positive for both. I began the CAP treatment in August 2005 and ramped up to the full Vanderbilt protocol in September. My worst month was November.I have been reading the posts about who suffers the most from this treatment and I have to say, it was a rough road for me at times. I don't care anymore what my diagnosis is because none of the doctors I saw were able to do anything to help me until I saw Dr. Powell. And my understanding of the Cpn disease process continues to grow. I just have to remember that I am in a battle for my body's energy and I have to use what I have carefully so that I am not short-circuiting the healing process.Minute by Minute, Hour by HourMy body has been like the weather lately. Stick around for an hour and things will change.I'm at the last day of a Flagyl pulse. I should feel wiped out but I'm not. Ramping up to 500 mgs of Niaspan twice a day brought out some die off symptoms the week before this pulse. But I picked up and began to feel better. I have a spot in the middle of my spine that has been feeling creepy crawly for weeks. Sometimes the muscles near it get sore and stiff. It comes and goes quickly. Still have stiffness in the muscles at the side of my head. Had some warmth sensation in one foot and heaviness in one leg. Sensations seem to shift around during the day from hour to hour. My right hand sometimes gets a little stiff and the arm muscles sore. It seems like I still have many areas of infection to clear. However the fact that these areas come and go is a difference from when they were persistent.Fatigue is normal---I work hard and get tired.Have been neglecting my exercise because I get busy--not good.I need to get moving and do some walking and Yoga. This is a small update at 8+ months of full treatment.A Lag in ReactionsIt seems lately there is a lag in post-Flagyl reactions for me. Wed. was the last day of a pulse. I had been sailing through it fairly well not feeling the effects but on Saturday, here I am---fatigued, woozy, legs ache and brain is foggy. I might as well just crawl into bed and wait it out. These are the times when it gets tough mentally. Distraction seems to work.Reading a book or watching a movie takes the mind off it and it doesn't seem so bad. Believe me, I am not anywhere near as miserable as I was in November. And the brain fog was so bad then that one day I spent 20 minutes trying to figure out how to fill in and mail a rebate form--that was scary. But those days are past and I noticed on my calendar that I haven't had to put any marks on any days in April and May that symbolize a very bad day. There are only marks for days with noticeable symptoms and good days. Let the good days keep coming. Hang in there girl.Back to the Pit Once MoreIt's been going on about a week now. I have been bounced back into the pit of suffering. It began with more aches in muscles, feelings of movement in the middle of my spine, side of the head hurting and ringing and aches in the legs. My appetite fell off and I feel queasy.Fatigue returned and a feeling of being out of breath. My pulse sometimes seems like it's pounding but it's not up that much. I have a sense of heat on the side of one foot that comes and goes. The restless legs at night haven't returned though. My intestines seem irritated. But I'm tired at night and sleep is not a problem.I take C, B12 and charcoal but nothing seems to help. I'm wondering if the Niaspan is affecting my body chemistry in some way. Maybe my potassium levels?I'm going to delay the next Flagyl pulse that I was supposed to have started this week.I see Dr. Powell next week so I will be re evaluating my treatment course with him.It's hard to remember when I felt so bad--probably in November. But thinking back, Nov. was worse--more pain and terrible brain fog. I don't feel too brain fogged this week. I'm still able to get through a day of complex work even though I feel bad. So strange how it comes and goes. I can feel awful one hour and the next I feel somewhat better. There's some weird mood swings, too.Last night, I filled up the tub with hot water and 3 cups of Epson salts, soaked and climbed into bed with a heating pad. I felt better in the morning but as the day progressed, began to feel poorly. Stopped at the health food store for some acidophilus and crushed some ginger into water when I got home. I guess I will just have to wait it out and get through this. On the way home I was driving by the beach and saw the teal blue surf pounding the shore. "How wonderful if I could wade into the sea and have it wash me clean of all that caused me pain", I thought. Tonight I can soak in the bath and think of the water pulling all the toxins from my body. And remember the waves.Back from a Long TrekLast week I made the long trek to Sacramento to see Dr. Powell and another doctor he suggested I see. It's a relatively easy trip for a healthy person but stressful for me (who is not.) I was grateful for the visits with both of them. Dr. Warner works with hormone replacement and put together a compounded mix for me that was heavy on the estriol. He knew all about the research at UCLA on MS and estriol.Dr. Powell was concerned about my platelet count as it was dipping below normal. We discussed treatment and the full antibiotic protocol. He seemed cautious about having me hit it so hard right now with all the antibiotics. He is advising more chlorella, niacinamide, indole3 carbinol, curcumin (lots of it) and perilla seed oil. I'm staying with NAC and the Flagyl pulses. He seems to think niacinamide in sufficient doses will interfere with Cpn replication. I asked him about low dose Naltraxone and he gave me a prescription for it. I began taking a low (1.5) dose a few days ago. Some waking up early noticed. Will add another 1.5 tonight to make the 3 mg dose. I did sleep hard and woke feeling better the first day after I took it.My last pulse of Flagyl was number 12 and it was grueling. Lots of large muscle burning fatigue and pain. Head pain and leg pain. Even some pain in my shinbone. Able to rest this weekend and do nothing. Began to eat fresh pineapple again daily. I had been neglecting this. I've read on some low platelet message boards that it raises platelet levels. My niece the nurse thinks that I may be producing a good amount but they are being beat up in the blood stream by toxins and such. Perhaps she's right. They have been fluctuating up and down through the months. I think pineapple may do the trick. I feel better when I eat it every day. The core is supposed to be full of bromelain--an anti inflammatory. Good to chew on even if it is tough. Bromelain taken with curcumin increases the absorption of curcumin (as does pepper).My Long Neglected Juice MachineMy long neglected juice machine was put into action last night. I juiced a whole turmeric root, apple, and bunch of carrots, pineapple, broccoli, lemon and watermelon together. I should have added ginger root too. I drank it down with my evening supplements. This morning I felt much better. I will be also adding watercress when I can get down to the farm stand. They have all organic fruits and vegetables. It is important to use organic when you are juicing because you are concentrating a large amount of fruits and vegetables.If you have a juicer, it seems like the thing to do to fill up on antioxidants. It takes time but it's well worth it!! Write in and tell me how it works for you.An Interesting Trip Through a TunnelI remember Jim talking about a "tunnel of pain" in one of his blogs. It's been like that for me since my last Flagyl pulse about two weeks ago. I may feel OK in the morning but after lunch, the ringing starts in my head, my neck and side of my head become stiff and throbbing. My arm and hand feel swollen and numbness creeps into my fingers. Lately my right leg has become sore and stiff. I make it home, eat something and get into an Epson salt bath as fast as I can. The heat helps the pain. My heating pad gets wrapped around whatever hurts the worst. I'm taking all the remedies for toxins and porphyria. B12, C, Chlorella, Curcumin. Rest seems to be helpful. At times, my mind spins dark scenarios of relapse and I feel a shadow of depression. But I get up the next day and I can still see normally and walk. I wonder just how long all this can go on. I was feeling much better in April and early May. I have two weeks before I have some vacation time and I'm just taking it one day at time. Maybe this won't be a very long tunnel and I will soon come out into the light.A Little time on a Good Stretch of RoadI had been enjoying a remarkable week of feeling good with high energy until the third day of my 15th Flagyl pulse. It was great to feel like a normal person again. Hot weather didn't bother me, I did whatever activity I planned and slept deeply every night. So now on the 3rd day of the pulse, head ringing, muscle burning and headache have returned. I still have a long way to go. Looking at Jim's Exercise and Affliction Chart, I would say that I have had all the Cpn afflictions except for heart problems--don't seem to have much heart disease (or high blood pressure) in the family.On a more positive note, I have had many people I haven't seen for a long time comment on how healthy I look. I'm no longer puffy under the skin---my muscles stand out. I've lost fluid and fat. I have a healthy rosy glow to my skin from better circulation and increased body temp. My typing is much better than a few months ago. I have been able to do a fast walk on the treadmill for a mile on an incline and then do Yoga afterward. I look like I did in pictures taken ten years ago.At times, I find it so hard to believe what is happening even though I am living it every day. I know it will take longer for me to clear this organism from my body because I have had such a long exposure to it. But I am seeing steady progress.Many of the things that have made a difference in my recovery were simple to implement. I began meditation in Nov '05 and have been keeping with it daily. It has made a huge difference in my stress levels. My diet is mostly organic vegetables, beans, a little fruit, chicken or white fish and complex carbs such as potato, brown rice, pasta and whole grains such as quinoa. I don't use butter but substitute olive oil. I drink a whey powder shake in the morning made with soy milk and a banana for energy. The whey powder has been burning fat and building muscle. Every now and then I eat plain yogurt or kefir mixed with pomegranate juice. I place a special emphasis on any fruit or vegetable that has antioxidant properties (such as blueberries) and try to eat 1 or 2 servings at every meal.I have been taking Low Dose Naltraxone now for about a month. I had morning headaches the first week I took it but not now. No weird dreams. I know it is supposed to stimulate the pituitary gland to make more endorphins that then raises Natural Killer cells. I sometimes wonder about my first MRI report that mentioned a very insignificant sized pituitary gland and how that might be related to Cpn and the cycle of the illness.I have much hope for the future. In August, it will be one year since beginning the CAP therapy. So much has improved. Who knew the road would be so hard? But I survived it. With a little help from my friends online! My thanks to all of you!Sailing Through a Great VacationI just returned from a trip to Hawaii to visit an old friend. It was a wonderful visit and I felt great the entire time except for a few little aches on the last two days. The weather was sometimes hot and humid and I was able to handle it like a normal person. The biting bugs still love me but I didn't have my usual excessive reaction to bites. I did some hiking, touring various sites and went snorkeling in the beautiful turquoise water. Saw monk seals, angelfish, sea turtles and rays underwater.I didn't experience any head ringing the entire trip. I bounced back from jet lag in a few days--seemed to sleep a bit more than usual.When I returned to S. Calif. it was if the tropic weather had followed us home. The hurricanes in Baja have made the humidity jump and the temperatures near the beach climbed into the 100s on Saturday. It's slightly cooler today but our house has no air conditioning--only fans. I am tolerating the heat well so far.I am continually amazed at my recovery process. I am a real skeptic but the evidence is so clear. Today I watched a video of myself from last August when I began the treatment. I looked so old and tired. My skin looked bloated and puffy. What a difference! What a change!Began another Flagyl pulse today (number 16) and feel a little head ringing coming on. My last pulse was not difficult so I must be dealing with a reduced bacterial load.Keep the faith and pass the antibiotics!One Year on the RoadAugust 1st was my one-year anniversary of beginning the Combined Antibiotic Protocol for Chlamydia Pneumoniae and Mycoplasma Pneumonia. It has been a year of tumultuous ups and downs, many new challenges and surprising physical transformation.Yesterday, I did a day of house cleaning in the hot humid weather that last year would have left me flattened and in bed the next day. I sweated for hours cleaning and then took a cool bath in Epson salts. Today I woke up with muscle stiffness in my arm and back from moving furniture and pushing the heavy vacuum around the house. But I ate breakfast, took my supplements and went at it again, cleaning the rest of the rooms I didn't get to.It seems my energy levels keep increasing but my muscles and nerves are still not up to the challenge. I realize this will take time. I am now 4 years older than I was when I first became ill. The best thing is to be active. I have been walking a fast strong mile on the treadmill, doing some Yoga and some exercises for my weak left knee. I still have some nerve symptoms such as a tightening on my scalp on the right side of the head, a little residual numbness in the right toes and a little stiffness in the right hand. My last two pulses (#15,16) were light on the reactions--some nerve pain, head ringing, a little chill and some fatigue. But my overall health is much improved. Last May (05) I was very sick with pneumonia. This last year, I didn't even have a cold. I have lost fat and fluid under the skin. My hair and eyelashes are growing in thicker. My circulation is better. I sleep very well--no more insomnia. The restless leg syndrome that was bothering me left in the first few months of treatment.I shudder to think where I would be if I had not discovered this treatment. It may take me years to regain my full measure of health, but through this process I have learned the meaning of patience and I am always grateful for the work of Dr. Stratton and his staff, Dr. Wheldon and Dr. Powell.I will continue on with the treatment another year and see where it takes me. For those who are just beginning the protocol, be patient and stick with it. It will take time. In the beginning I was so anxious to see some positive changes. I had to go through periods of feeling worse before I could feel better. This was emotionally difficult and this web site helped me get through the worst of the times. My thanks to everyone who responded with encouragement and support. The stories of others such as Rica and Sarah were an inspiration to me. The courage of Guner and Willow gave me strength. And thanks most of all to Jim who did the hard work to put this site on the web.Love and thanks to all, Raven
There is another issue with Chlamydia therapy that may be a factor. There is definitely a "Chlamydia load" that is a major problem. By load, I mean chlamydial elementary bodies (EBs) that have accumulated in blood and tissue as a part of the infection and life cycle of the organism. In blood, these EBs ride around on RBCs (photo taken with a Bradford microscope - which can magnify 18,000 fold). (see the attached file for this picture) Presumably, these EBs can infect cells. Interestingly, cells already infected by Chlamydia are protected from further infection. As infected cells are cleared or die during chlamydial therapy, there are new cells that are now susceptible to infection by these EBs. This is one reason we like to add rifampin to the regimen. If you break open chlamydial EBs using a reducing agent such as penicillamine, there is immediately present a preformed DNA-dependent RNA polymerase - which is the target of rifampin. Rifampin does not allow the EBs to transform to reticulate bodies - which then must be killed - or are killed and cause antigens to be released. these EBs have been documented by Bradford microscopy many times and the magnitude of these EBs clinging to RBCs correlates with the severity of illness and the reactions with therapy.