Cpnhelp.org

I am totally confused about the protocols now.Is the doxy/azith/flagyl combo out-dated? 

Hello dear all, from the interview with Dr. A  one may conclude that rimfapin is really something special and penetrates deeper in tissue, at least I did.  I'm currently on Minocycline/Roxytromicin/Amoxicillin + Metronidazole combination  and doing very good, without any major reactions to any ( when started amoxicillin and may be metronidazole, it made a difference for a first couple of days or so - was very tired and slept the entire day). I was thinking maybe to add rimfapin to kill the beast. Does that make sense? And if it does will it be meaningful to add it on top of what I'm taking now or instead of something. I've been on ABX since February of 2005, and added Metronidazole in June. I'm on my own with this treatment and don't have a doctor to discuss with. Any your comments are greatly appreciated.

Hi dear all, Is it only me who can't access Thisisms.com ? In light of many things going on, I won't be surprised if CRAB producers have pulled some strings :) Not being a conspiracy theorist ... I think I may become one soon :)  

Baseline Reference:'83:  Severe bout of nystagmus,visual problems[depth perception], severe upper back muscle tension, stiff neck, extreme fatigue, pounding heartrate, dizziness, raw/red throat,nausea.  TX: 2 wks PenVK(Neg strep/Neg EB)'83-'92:  Occasional sore throats, chronic sinusitis, nasal allergies.  Mild/moderate fatigue/dizziness.  Was labeled "Agoraphobic", but felt ill and dizzy even in the "relative" safety of my own home.TX: EES, Amoxicillin, Augmentin, Keflex, numerous times/yr for sinus infections.  Unsuccessful attempts at therapy groups to deal with "anxiety".  '93:  Sudden episode of neck pain/stiffness, combined with mid-back tightness with resulting numbness/tingling in left hip/foot. This occurred with a lumbar disk problem, and lasted for months, making ambulation painful.

I have been having some health issues since about oct. 10 th / 04 . It started at work one day with waves of dizzy spells, which seemed to be triggered by movement of my neck. They continued non stop for two weeks , then were accompanied with periods of chest pain. At this point I was starting to get worried, thinking I was having heart problems. I also noticed that my vision was becoming worse, almost like the dizziness. It seemed to come in waves of blurriness. A visit to the first aid room found my heart rate to be very erratic. I was sent to the hospital by ambulance, thinking I was having a heart attack. A three day stay in the hospital, hooked up to a heart monitor, showed no problems with my heart. While I was there I had blood work done which came back normal? I also had a c.t scan that revealed a sinus infection, which I had no symptoms of. I was given a two week dose of anti - biotic and was told not to worry , the symptoms were most likely the sinus infection. I returned to work on the Friday, only to have the dizzy spells and the blurred vision return with in an hour. I continued with the anti -biotic and remained working. By mid November the symptoms started to worsen, the dizzy spells seemed to last longer and a feeling of total fatigue after doing the simplest of tasks. This I found to be odd because I had been working out with weights and riding bike, doing a very aggressive work out for over a year. As I look back now I see the symptoms had started earlier than I had noticed. While I was lifting weights I would have these quick flashes of dizziness. As time went on, my workouts became shorter and shorter. By the end of August  2004 my workouts came to a gradual halt. It was as if my motivation was stripped from me.  A trip back to the doctor for more tests still reveals no clues as to what is going on. Struggling to continue to work and finding myself in emergency rooms way to many times, my employer finally ask me to take a medical leave until the doctors could find out what was going on. Being that I work in a sawmill and operate moving equipment, I thought it was probably better for the safety of others and myself to take some time off. My last day worked was Dec. 10th/04 Since then after many visits to different doctors with diagnoses from possible heart problems, to maybe its depression, to a quote from my doctors secretary " have you been tested for M.S. " Until then I had no idea as to what M.S. was. Well since then the story starts to unfold. After hours of research and looking back in to my past, the pieces are fitting together. I believe this all started about twenty- three years ago. During my first marriage. , I began having problems with symptoms of which I thought to be a S.T.D. Problems with urinating, burning sensation. After having several attempts to get a doctor to run some tests, I finally had some tests done. To my surprise the tests came back negative. I continued on with my merry life. Soon I started having more problems, itchy skin, burning eyes and inflammation in my knee. My knee would become so inflamed I could hardly walk. It would fill with a yellowish green fluid. Tests of the fluid would always come back inconclusive. Finally I was sent to a specialist in Vancouver. A five minute visit by a doctor that I just drove five-hundred miles to see, diagnosed me from sitting behind a desk with a disease called " REITERS SYNDROME" He gave me a two week dose of Tetracycline. At the time doctors still were unfamiliar with reiters  and to what the cause was. I just recently found out that reiters is a symptom of chlamydia . This I found out after writing a letter to David Wheldon. If not for the reply from David W  I would still be in the dark as to what was going on.    Chuck, Thanks for your letter. There is quite a lot of evidence that Reiter's Disease is caused by chlamydia; it should be responsive to the same antibiotic combinations. The antibiotic webpages are made to allow simple treatment; you just have to follow them. The combination of doxycycline and rifampicin (with metronidazole later added) seems to be very effective against chlamydiae. best wishes, David   A trip back to my Doctor with some questions about Reiters and how could this be related to chlamydia because I had been tested for chlamydia when this all started over twenty years ago.  We went through my files and sure enough there it was , a chlamydia test but to my surprise showed that I tested positive for chlamydia. I don’t know what happened but some how this report got filed with out me ever being told that I had tested positive.  All these years I was  taking a low dosage of Erythromycin to keep this so called Reiters at bay .My doctor insists he must have told me but I know for a fact he didn’t because I always   mentioned to him that I thought my problems were related to sex. He wasn’t the only Doctor that was in the dark about Reiters , for years I had seen numerous Doctors and when I told them I was taking anti-biotics for Reiters  their reply was always “ what is reiters syndrome ?”   I ended up having two urethral dialations and developed chronic lower back problems. No one ever put the two together as being of the same source. I also developed chronic problems with my wrists and other joints. I always believed the problems were linked to the so called reiters but doctors always had some other reasons  for my problems. They would suggest that I go have surgery for carpal- tunnel but I always refused , knowing in the back of my mind what was causing my problems. Now they call it fiber myalgae   I now have been on Wheldons proto call with doxycycline , rifampin and metronidazole for just over seven months now . Wow ! what a difference. The chronic fatigue had gotten so bad that a trip down the basement stairs would lead to a fifteen- minute nap before I could get back up the stairs.  I was reading all the information about M.S as I thought I was heading down that path. I have since had a M.R.I and was found to have no lesions . I  was surprised because I had started the treatment before the  M.R.I and was having a worsening of all the symptoms.       (spastic legs and arms, blurred vision ,twitching in my left eye , problems swallowing , over heating, it was as if someone was turning a switch on and off , ringing ears, I even went through the same experience as Wheldons wife  with the distant sound of machinery. That was bizarre , I jumped out of bed looking out the window to see what was going on,  only to find there was nothing outside.   Treatment is quite confusing at times , just when you think things have settled down and you are getting back to normal , you hit another round of metronidazole and things seem to start all over again. I have had days where the metro dosent  seem to be to bad and then I have had days where three days feels like a life time. I think I have gone through symptoms of porphyria.( chest pain , muscle cramps ,depression,blisters on my feet, itching, abdominal pain and sensitivity to sun.) I have also noticed a itchy spot behind my right ear is healing up. This bothered me for years. My  right shoulder which has given me troubles for years,  kind of comes and goes with bouts of the metro. I continue to go through spurts of large joint pain . I went through a period of two weeks where I could hardly walk. When I first started the treatment I developed tingling in my forehead which lasted for months, this has just started to subside over the last few months. Over all I know I am getting better with every passing day. I was off work for about three months and have been back to work since February 04 . I am still struggling with doctors to treat the  rest of my family as I believe they are all suffering from this bug . Tests have come back showing high levels of  CPN but doctors seem to be lost as to what to do.

I just located your site.  None of the traditional MS treatments has helped my husband, and now they want him to go on stronger Rebif.We thought he may have lyme which has new info showing a relationship between MS and lyme-found in the same geographic locations.  Now I have found your site with a new bacteria.Please tell me how some of you with MS are doing on this protocl? We see his doctor tomorrow.  None of the Neulogolists we have seen have considered looking at the Cause of MS.Thanks for your immediate help!

Moved to Patient Stories page.

Some users of cpnhelp.org have reported difficulty creating a new forum topic or posting a blog. The site seems to like some browsers better than others. I'm a Mac user, and sometimes Safari doesn't work so well, but Netscape does fine. 

Another posting problem solution

Another thing to try if you are having difficulty posting things is go to your account settings "My Account" and "Edit" and turn off the "tinymce" setting. You won't have the buttons or smileys to use, but see if that works more reliably for you.  If you have difficulty, try this, and let me know what works and what doesn't: specify PC/Mac, your browser, and whether it was a forum, comment or blog.

Jim is on the right track here.  Ten years ago, my asthma was so severe that I actually went into full respiratory and cardiac arrest.  Paramedics did CPR on me on my front porch in front of my family.  Asthma completely destroyed my life.  But even though I was diagnosed with asthma by no less than 10 doctors, it was chlamydia pneumoniae that was the real culprit.  After finding research of Dr. David Hahn who treated asthma with antibiotics, I took zithromax for 14 weeks (1000 mg a week) and my asthma is now 100% completely cured.  I went from being extremely ill for 10 years to a strong person again who actually hiked hundreds of miles of the appalachian trail.  Completely rid of asthma.This bacteria is nasty !  Don't let people talk you out of researching this.  The hardest part is finding open minded physicians who will prescribe the medications.  Perseverence could change your life.

Since a CFS doc found high titers of Cpn and started treating me for it I've spent a lot of web-time trying to learn about this nasty little bug and the newly emerging research and treatment methods. So much has been scattered in different sites and focused on one specific disease.

I really thought we were missing something by not having a centralized source of information: a place where we can collect and compare stories, research we've found, progress (or it's lack) in treatment, and begin to find the commonalities and differences in the treatment process across and between different disease diagnoses.

As this site develops, it will do so by whatever community of folks form with interest in it: patients, researchers, physicians, friends and fellow travelors with other occult infections and inflammatory conditions.