Cpnhelp.org - Chlamydia Pneumoniae Treatment

This is interesting and very true, but in the UK it is much more difficult to find a new doctor because of our health care system.   So we are in a no win situation, unless we are lucky enough to have a doctor in our area that is willing and interested enough to do the research.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Jeanneroz -

Thanks for posting this ! 

I know many who come here are very frustrated by this same issue. 

Also, many who first visit may think,  if this CPNi treatment is so great, why doesn't my doctor know about it ? 

And/or why does my doctor so easily dismiss antibiotic therapy for XYZ disease? 

Shouldn't I trust my doctor to know what's best to treat my disease?

My answer - if your doctor is doing such a great job of treating your disease and you are satisfied, whatcha doing looking around the internet for answers/solutions?  I know that's a little sarcastic but I mean it in the nicest way.  There's a reason your doctor doesn't know.

Most doctors in America get most of their information about new therapies/trends in drug treatment as follows:

1) They take time to skim the contents of 1 to 2 peer reviewed medical journals every month or so and then if something really catches their eye they might read the article - or at least skip to and read the discussion/conclusion.

2) They rely on the hundreds of pharmaceutical reps who darken their office doors every month for updates on the latest drugs and treatments

3) They attend local, regional or national educational conferences (which are heavily funded by the pharmaceutical companies) to receive their updates on new treatments, ideas in medicine

4) They attend local journal clubs in which disease specific topics and treatments are discussed (heavily funded by the pharmaceutical industry)

5) They attend Grand Rounds at the local hospital to which they are affiliated (also heavily funded by the pharmaceutical companies)

6) They learn from peer to peer learning (word of mouth from other doctors)

7) They are trained in medical school to practice by facts. By something called  Evidenced Based medicine.  Where is the body of Evidenced Based Medicine regarding antibioticsi in XYZ disease, Etc...

Doctors actually do spend a lot of time learning every year.  A good deal of it heavily influenced by the pharmaceutical industry though. 

Very few antibiotics have US patent protection, therefore, zero interest in researching or selling generic antibiotics for autoimmune disease by pharmaceutical companies.  They are spending their coin going after the high ticket items - Copaxone, Avonex, Tysarbi, Enbrel, Rituxan to the tune of $20 grand per year per patient.

Problem with learning about treatment with antibiotics for so called autoimmune diseasesi :

Where are the good quality clinical trials published in their routine medical journals? 

Where are the trained physician educators presenting information on the treatment ideas and experiences at their medical conferences, journal clubs, grand rounds, etc...?

Where are the droves of pharmaceutical representatives chasing them up and down their offices with information that they can improve or cure their patients with "autoimmune" diseases by using antibiotics?

I don't blame doctors at all for not knowing this information.  The only ones likely to learn it  are through searching for a solution to their own or close family members disease as happened with Dr. Wheldon and Dr. Barbara (life on the ice).  Or maybe through persistent patients coming in and logically presenting the data and educating them.

In the case of my husband's physician, he gets asked several times a day from his patients about all sorts of "quack" therapies to treat MS.  Some may really be quack and others may have some validity.   He seems to me to be very patient and kind in answering that there isn't any good research on the "quack" therapy but if he doesn't believe it hurts, he will go along.

On the other hand, while my husband's doctor initially discounted antibiotics in my husband's case and clearly cited flaws with the Vandy and Marshall protocolsi ( he had actually tried to learn about these for patients), his mind is now much more open to the use of antibiotics for MS as he has observed the rather dramatic results in my husband. 

May take doctors having patients take antibiotics and demonstrate dramatic improvement before they begin to really take notice.  This is another way they can learn.  Really admire Karl who posts here going back to each of the doctors he saw when he was in crisis to educate them on what antibiotics have done for him.  Sure will make a neuroi think twice about saying no to someone in Karl's similar situation when they ask about antibiotics...

Also, the longer you have seen your doctor and developed a good relationship with your doctor, while being compliant with their treatment suggestions, yet still worsening with disease, the more likely they are to have an open mind and write an experimental CAP type therapy for you. 

Going into a doctor you rarely see or havent seen for very long and right off the bat requesting something experimental is mostly likely going to be shot down no matter what it is.

Thank goodness for the internet and websites like CPNHelp !

^{Daisy - Husband on CAP 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan}

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

> time to find another doctor

As Michele says this is the key statement. In a market system (like the US) the patient has a fair amount of power. Certainly the power to hire & fire. In a socialized system the patient has almost no power. You can't hire & fire. You just have to accept whats on offer.

Whilst its true we do have some privatised medicine, its absolutely tiny compared to the US. The US has hundereds of docs who will treat CFSi. The UK has a handful. If you don't like whats on offer you are stuck unless you fly out to the US, but if you are seriously ill chances are you can't fly.

Its a lose-lose situation. 

CFS. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg . Tinii pulses 1000mg. Sauna QOD. D 8000IU. Niacini 3 x 500mg. Mel 3mg.

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Hunter: Don't think - experiment

Thanks Jeanne and Daisy for your well written and objective presentations of this problem.  I would like to see this post or the most objective comments from it to find it's way to the Getting Started Page.

It would address that FAQ about physicians lack of knowledge about CPni.  And it is done in a somewhat supportive way.  I agree with the points made thus far.

Great thread. 

 Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi. 

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Compare What Causes Chronic Fatigue Syndrome?

Causes

and

LATENT CHLAMYDIAL INFECTIONS: THE PROBABLE CAUSE OF A WIDE SPECTRUM OF HUMAN DISEASES

 Nobody want to belive.

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

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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

Compare What Causes Chronic Fatigue Syndrome?

Causes

and

LATENT CHLAMYDIAL INFECTIONS: THE PROBABLE CAUSE OF A WIDE SPECTRUM OF HUMAN DISEASES

Nobody want to believe.

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

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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

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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

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Jan it is easy to double click accidentally really think nothing more about it , it happens. Nice to have your post!

Blessing , Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi. 

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support