Cpnhelp.org - Chlamydia Pneumoniae Treatment

They all have there heads in the sand. Dr. Thomas Mcpherson Brown told them in 1939 that these disease's where bacterial in nature.He also said 1 to 5 years of treatment. They did not listen then and blackballed him. How can they explain everyone flocking to lyme drs. If it did not work people would not continue to go. What a shame that people have to suffer because of arrogance.

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zero negative sjogren's diagnosed 2/03, 200mg minocin daily, biaxin,plaquinel mwf, flagyli every 3 weeks.

Joyce, a fascinating article; thanks for linking to it. I'm sure that so many of these diseasesi are polymicrobial infectionsi; one species breaches the defences, making opportunities for others. We accept this reasoning in HIV disease; as the immunei system becomes critical any of twenty or more co-pathogens can emerge. In another example it seems pretty definite that many bacterial and viral species are involved in lipid arteriopathy in its different stages. It's been mooted that a new microbe might be implicated - see this interesting study from Brazil: [Higuchi ML, Santos MH, Roggerio A, et al., A role for archaeal organisms in development of atherosclerotic vulnerable plaques and myxoid matrices. Clinics. 2006 Oct;61(5):473-478. Link-pdf available.] The archaea are single-celled prokaryotes which are not bacteria but a completely different domain of life. Until recently they have been thought of as free-living, often in extreme environments. These workers comment: 'The archaeal elements were frequently seen in close contact with chlamydial elementary bodies, which have a typical form, i.e., round dark structures enclosed by a double membrane with an small expansion that gives the characteristic pear shape to C. pneumoniae; alternatively, they were frequently seen with mycoplasmal forms characterized by rounded elements with granulous cytoplasmic material enclosed by a unique membrane.'

Thinking about the Lyme issue, might a silent and chronic C pneumoniae infection (present in a substantial proportion of the population) be able to prevent the immune system from resolving an acute borrelial infection? Occam's Razor doesn't always do what you'd expect, and it's wise to have a box of plasters handy.

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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]

Heads in the sand, Lee is being extra nice.....I was thinking more like heads up their own BUTTS or up the BUTTS of big pharma.

David, you must be correct, we are dealing with a plethora of invaders. I can see it in my own family. Husband with MSi probably infected with CPni, Lyme, babesia, others? Now, a 9 year old with Kawasaki Syndrome (might be caused by CPn) with strange transient symptoms ( electric shock down spine, neck stiffness, light sensitivity...etc) with a tick bite in 2001 and now with a Lyme test with strange postive bands, too......

Thanks Joyce, this was a great article for me today. I admit to feeling slightly overwhelmed, especially with my child. We need HELP from a medical community who can make these connections so we do not have to be made to feel CRAZY........I know in my gut there must be something to all of this and unlike before, I'm going to follow my gut on this one.

Lexy

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--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi

Lee,  Sixty-seven years since Dr. Brown planted that signpost and the medical community still can't believe in the feasibility of the direction it points.

David,  What a surprising man you are.  I expected you to comment, but the response I expected was of a completely different nature from the one you gave.  Thanks for that link---it's very timely fodder for me to use in presenting information on the complexities and variabilities of any given CPNer's inflammationi profile.

Lexy,  Glad you liked the article...someone very close to you is responsible for setting me on the path where I stumbled over it.

Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi):  started CAPi 8/21/06

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Thanks Cypriane for sharing the article.  It’s now personal for me as well.  I have been reading and learning about Cpni for many months.  I can’t begin to thank all of you for offering a place to learn.

It is the Wheldon protocol that kept me diligent in finding what was wrong with me. It was this protocol that finally made sense!  Then to read what is going on in the medical community in regards to bacteria is nothing more than Shameful!

Due to my knowledge from this site did I have the ammunition to speak to my current doctor and ask to be tested for Cpn…

How then was I surprised to find my    IgGi Chlyamida Pneumoniae test was 1:256 when normal range is <1:16.

And my CD8-CD57 is 21           normal ranges are    60-360

People including children are sick out there and not in their heads……thank you again to Dr. Stratton and Dr. Wheldon.

Jones said that of all the children he has treated, "about 75 percent are [now] well, and without symptoms."

Honestly, I just don't believe that. I think Dr. Jones is a truly great humanitarian, but 75% is an astronomical percentage of asymptomatic outcomes. 

Occam's Razor doesn't always do what you'd expect, and it's wise to have a box of plasters handy.

LOL

Eric,  Thanks for highlighting David's very wry and dry and excellent humor.  I was so distracted by the unexpected nature of his comment that his last line went right past me.  Coincidentally, just this morning, Steve and I were discussing a variety of critical life issues and how too many people try to crystallize them into very simple ones.  Their desire to simplify those issues doesn't change the truth when the truth is that they are very complex.  Contrary to currently popular trends in thinking, I believe truth is not relative and that it does not change.  It's our discovery and evolution in the understanding of the truth that reflects change.

Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi):  started CAPi 8/21/06

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce, I'm an inquisitive person - if I were feline I'd be dead - what did you think I was going to say?

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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]

Ha.

Just to clarify ambiguity, the two quotations in my above post were from different sources. The second was taken from David's post, but the first was taken from the news article.

Article David posted here is really interesting, though they ID'd the stuff in the micrographs by morphology alone. The archean PCRi bands look well defined, but negative controls from healthy patients are really needed there. This is indeed though (as the authors do say so themselves) pioneering stuff.

Incidentally, I first heard archeans were indifferent to all clinical antibacterials; later I heard that they were sometimes indifferent and sometimes sensitive. Both were one-sentence assertions and I haven't seen any data, nor do I think there was even a reference given, nor could I ever find anything on pubmed. Google scholar is far better than pubmed for de novo searches (I now know) in case anyone wants to go dredging.

David,  I thought you would comment on the sorry state of affairs related in the article concerning the discord, antagonism, change resistance, etc. in the Lyme's treatment arena and its parallel in our arena.  In fact, I expected you to "wax philosphical," but I suppose "waxing" is highly dependent on the momentary pre-existent streams of thought.  Plus the temptation might not be as strong since you've already "been there and done that."

Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi):  started CAPi 8/21/06

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

It's surprising to me that so many professional people talk about the "dangers of prolonged antibiotic use" without attribution. There are some dangers, of course, but they're manageable. It reminds me of some educators' way of blandly assuming that "acceleration" is in some way harmful to gifted students. There are a great many studies showing nothing but benefit, and a very few showing some harm, but they talk as though there were no doubt at all.

What's it called when you just talk as though something is true? (other than "politics"?)

It's very powerful, I know; often outweighs plainly-visible evidence to the contrary. For instance, why does Dr. Jones' actual record count for so little? Even if it's not "chronic Lyme", he's curing SOMETHING; why isn't that the emphasis? "Hey, this guy's curing something, let's find out what it is!" It shouldn't matter whether he calls it "demonic possession" or "Bob" or "chronic Lyme", or at least that should matter less than the results, which are easily measurable. Very odd.

 I do know this: the beneficiaries of an unfair system will inevitably view it as the natural order of the universe. Is this one of those, somehow?

I was an inventor for the first 25 years of my professional life, so I've seen a lot of attempts to change people's way of thinking, but I don't believe I learned anything about it in all that time. I do know this: logic and evidence are way, way down the list of effective tools. 

 

Ron 

On Stratton protocol for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continous; metronidazolei -- 4days on, 7 days off.

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Ron

On CAPi for CFSi starting 01/06 (NE Ohio, USA)

Currently: doxyi & zithi -- continuous; metronidazolei -- 5 days on, 9 days off.

Get the research results you paid for: support Open Access

Joyce, I'm not Lyme-literate and the reason I can't comment is that I don't know the weight of evidence. I don't think we see that much borrelliosis here in the UK. That may be because its not there or because we're not looking. When Sarah's illness worsened we sent some serum to Southampton, and I was able to speak with one of the borrelliosis consultants there; she was very generous with her time. The reason I was concerned was that not long previously we had moved into a three storey house. Swifts, those beautiful and agile migrant birds nest every year in a hole in the soffit just above the bedroom window. Now, these birds have a big tick burden; the window faces west gets the prevailing wind. I kept thinking of the tiny tick nymphs being blown into the room. Swift ticks are not known to carry Borrelia, but who really knows? We frequently picked the birds up with ungloved hands when they got trapped between the window-sashes. They are amazingly trusting and seem to know that you mean them no harm. Sarah's serologyi (both Elisa and Western blot) was negative. But shortly after that her previously benign MSi became aggressive. She actually began to look like someone with an infection.

When people are pushed into a corner they tend to emphasize their claim. Some Lyme-literate doctors do begin to think that Borrelia sp is the be-all and end-all of chronic CNSi infection. It has been mooted that you only get 'Herxheimer' reactions when you treat spirochaete infectionsi. The logic used is that you treat a person with antibioticsi and you get a 'Herxheimer' reaction: ergo, you are treating a spirochaetal disease. This logic is flawed: it suggests we have identified every creature in the jungle. Additionally, you can get very similar die-off reactions with infections due to Haemophilus influenzae and, apparently, Pasteurella sp. The fault here is the use of that word 'Herxheimer', which was indeed first used of spirochaetal infections. 'Bacterial die-off reaction' is a better phrase.

I think that in the UK we are allowed quite a lot of clinical freedom: a medical practitioner can do unorthodox things provided he can substantiate his practice with evidence and show that the balance of treatment is appropriate to the risk. Whether this generosity of spirit will continue is another matter. That institution with the acronym N.I.C.E. at present makes recommendations (drawn up by the great and good of medicine) if it is allied to the GMC, a regulatory body, recommendations would become mandatory.

And, too, I still have the 'Plague of Athens Survivor' mentality. Sarah's recovery (against all establishment thought) from a disease terrifying to witness has changed my entire perspective of the world.

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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]

David- Your Occam's Razor comment made me laugh and wince at the same time. A choice phrase, and wryly describes the dilemmas of so-called logic in a complex world.

Archeans? Sounds like a bad Sci-Fi alien. Certainly is true as the Bard said, "There are more things in Heaven and Earth than are dreampt of in your philosophy..." or medicine. Which, I suppose, is the whole point.

Let us pray and send monetary support to the defense of Dr. Jones, as a negative judgement by the medical board there would send a massively chilling message to all doctors in the US. This would not only devastate the Lyme community, but also render our efforts to enlist physicians in Cpni treatment quite impossible. It would throw all of us in the US into a situation where we would be forced to self-treat. An irony here, the potential harm of prescribing long term antibioticsi which the orthodox medical community is so worried about is nothing against the potential harm of people having to treat a truly dangerous infection (see Dr. Stratton's latest comments page in the Handbook) unsupervised. 

Cpn, like Lyme, is not just a "quality of life" problem. People die from these diseasesi every day. They are just called other things: complications due to MSi, heart diseasei, hypertensioni, brain inflammationi, and so on. This is a serious disease.

Some one once said that, in the end, all forms of death can be ultimately classified as "heart failure." Perhaps we can paraphrase and say that, in the end, all forms of inadequate medical treatment can be classified as failure of heart.

Apologies for the morbid mood, it's been a tough week.  

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei &amp; Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim,  Exactly!  Thanks for laying it out so eloquently.  Joyce

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

After reading Jim's post I did a Google search on +Charles +Ray +Jones +Lyme and now have a little wider background. I honestly hadn't known that this was such a controversy in the US. The implications are huge.

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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]

David,  Yep.  That's what I had expected you to "wax philosophical" about.  It makes me very nervous for current CAPers and those who need it now or will need it in the future. 

Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi):  started CAP 8/21/06

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

 

Hi,

maybe the reason they don't see much borreliosis in the UK is that they are still only using the ELISA and western blot even though their own medical microbiologist Dr Ho Yen at the Raigmore Hospital in Inverness recently did an audit of tests performed at his lab over the past year and found that they had missed 33% of lyme disease cases. 

You are right,  the 'Lyme Wars' are not only in America but we have some doctors on our side,  Dr Wright is finding borrelia and other bacteria in the blood of about 90% of chronically ill patients by dark field microscope. This is what he wrote recently about the link between ME/CFSi and bacterial infectionsi 

               http://tinyurl.com/u2hkb

 

 

 

 

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Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

I hope fervently this community isn't going to become yet another Lyme Disease forum. There are many other places on the Internet where Borrelia sp can be discussed. As far as I know this is the only forum on chronic infectionsi with Chl pneumoniae.

 

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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]

David,  I agree; this website exists specifically to inform and support people who need treatment for chronic Chlamydia pneumoniae infection.  It's a blessing that we need not feel inhibited about mentioning co-infectionsi, but those discussions should certainly be self-limiting.  Besides, compared to other focused websites, their discussion here can only be puny.  My point in posting the article was that what is happening in the Lyme's arena mirrors what is happening in our arena, and perhaps their situation has progressed a little beyond ours. My concern is that the conflicts between  the two "camps" and the possible legal curtailment of the long term anti-biotic camp might foretell what our future holds.  It seems my point was largely lost, though, which I blame on my poor a.m. communication skills.  I'm a severely morning impaired person.

Joyce~caregiver and advocate in Dallas for SteveJ (SPMSi):  started CAPi 8/21/06

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

 

I don't think this will turn into a lyme forum at all, I thought the point Joyce was trying to make was that people with Cpni were finding that they have the same fight for recognition and treatment as lyme sufferers.

My own experience is this.........my GP accepted the diagnosis of lyme/borreliosis and gave me an NHS prescription for minocycline but when I failed to make progress and a test for Cpn was also positive she not only refused additional antibioticsi but withdrew the minocycline! It doesn't make any sense to me....it seems Cpn could be even more controversial than borrelia...... And God help anyone with both!

 

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Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

 

Jim, I can only agree. You are right. I am living on the other side of our EARTH but I can sign it.

Jan, Prague, The Czech Republic

Date Started CAPi's:
12/01/2005

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Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni. August 08 - still improving

I know you are right. I think I was only being gloomy. My nickname at one time was 'Eeyore'.

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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]

Lyme in UK - the easy answer to the UK/US difference in Lyme is that we Brits generally do not have any contact with wild animals or their environments. Going hunting is a US pastime, Brits don't have guns/go hunting.  Inverness is a remote town in Scotland and deer live in the area but it is totally atypical of most UK towns.

I hope this site will stick with info on CPNi where it may be causing disease.  The thought process should be: I have this identified disease (MSi/RA etc); could CPN be a factor ?; lets try an empirical abxi protocol starting with NACi; Is the disease resolving ?...................Mark

Mark Walker - Oxford, England.
RRMSi since 91, Dx 97. CFSi from Jan03.  Patient of David Wheldoni Feb06, started CAPi Mar06, with Copaxone. Pharma Consultant (worked til Jan 03).

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Mark Walker - Oxford, England.

RRMSi Nov 91, Dx 97. CFSi Jan03. Copaxone + continuous CAPi (NACi, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abxi from June 07 onwards.