Cpnhelp.org

I wasn't going to post for a few days whilst I got on with some real work, but I thought I had to make a brief comment here.  This page of Marie's is excellent and should be read by everyone............Sarah

An Itinerary in Light and Shadow

I agree, it definitely applies to the potential link between Cpnⁱ and Rosaceaⁱ too.    

Excellent work Marie.    Thanks so much (as always!)...

On Combined Antibiotic Protocol for Cpn in Rosaceaⁱ since 01/06

Rica PPMSⁱ  EDSSⁱ 6.7 at beginning - now 2.  Began CAPⁱ Sept, 2004 with Rifampin 150 mg 2xd, Doxyⁱ 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagylⁱ  total 43 pulses NC USA

I always look forward to Marie's posts; this one is an analysis of the limitations in the viewpoint that C. pneumoniae has a role in Multiple Sclerosis. It is impartial and thorough. I read it carefully and with great interest, and recommend others to read it also.

As I read it I found myself pondering the manner in which medicine is practised. It is often not very rational. I recall, as a medical student, standing in a women's ward in a big mental hospital which had been built in the 30's in beautiful countryside. It was a consultant ward round; we had almost finished. We came to one very perplexing woman who was behaving very bizarrely. Her symptoms fitted no psychiatric stereotype. The consultant clearly didn't know what to do. Two psychiatric social workers were having a private but rather loud discussion about tatting in the background. The sister was keeping her thoughts to herself. The registrar was quietly doing isometric exercises. 'Tell you what,' said the registrar, suddenly, and rather impertinently. The consultant looked at him. 'Have you a suggestion?' he asked. 'Yes,' said the registrar, smilingly. 'Let's give ECT^[1] a whirl.'

I've never forgotten that phrase: 'let's give ECT a whirl.' Give it a whirl! What an odd way to recommend a much-argued treatment, and yet how refreshingly honest! There is a deadly comicality about it. The main thing about recommending something on a hunch is never to forget that it is on a hunch. When Sarah was falling through the EDSSⁱ numbers, the diagnosis made, the Internet searched, the original Vanderbilt paper discovered, the objections by Hammerschlag discovered also, I must confess that I didn't weigh all the evidence scientifically. I did a brief risk analysis (aggressive SPMSⁱ: deadly - doxycycline: one of the most harmless antibioticsⁱ available) and started. It was a hunch that maybe the Vanderbilt workers were right and that the entire neurological Home Fleet was wrong. (This was in 2003.) I remember reading an interview with Hammerschlag in which she said ". . . this study shows that it's much too soon to put MS patients on antibiotics for Chlamydia pneumoniae." And as I read these uninspired words that risk analysis went through my head. Other people's risk analyses came to mind, too: the risk that if MS has an infective input (as seems likely from the epidemiological data, even if one does not stipulate a pathogen) the administration of a T-cell immobilizing antibody may be clinically rather unwise. Hippocrates was surely right when he said: 'first, do no harm.' Many times, as a doctor, I have to make recommendations on poor or inadequate information. One has to admit to making assumptions. Often one can only say, 'If I were in your place I would take this road.'

So Marie is quite right: there is a weight of evidence on either side of the equation, and it's wise that we admit this, even if positive evidence carries more weight than negative evidence. We are still in the opening pages of the story. But I have a hunch that in 20 years' time the idea that C. pneumoniae infection is a key factor in the multifactorial illness MS will be mainstream.

^[1]ECT - Electro-convulsive Therapy.

Rica PPMSⁱ  EDSSⁱ 6.7 at beginning - now 2.  Began CAPⁱ Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagylⁱ  total 43 pulses NC USA

Marie, Joyce (cypriane) here.  This is an upright, forthright website.  If it were possible for cpnhelp.org to become any more upright and forthright, your public examination of what we are doing accomplished that.  Actually, I think you did an admirable job of being as objective as someone in your shoes could be.  Those of us who are committed to the CAPⁱ need to stay abreast of what is going on outside our own microcosms and strive to remember what it was like when we were on the outside looking in.  While we are always mindful to be honest and not cover-up the warts of the CAP experience, it's also important to honestly assess how the CAP stacks up against other treatments in terms of public verifiability and within the framework of the established system of treatment standardization and transition.  Your piece was excellent for this...and just plain excellent. 

Now, about the established system of approving and controlling treatments...it's good for what it's good for, and we benefit by its workings.  But, the system effects transitions at an oozing pace when compared to the much swifter transitions effected by our illnesses.  When we submit to the confines of a system that cannot serve us effectively as we are faced with grave challenges, we allow the tail to wag the dog.  When we step outide those confines to be bombarded with a plethora of non-mainstream treatments, we owe it to ourselves and our loved ones to ratchet up a few notches in our critical thinking skills.  Examination, analysis, and comparison must replace the comfort of trust.  When considering alternatives, anyone in such a precarious position could use your page as a model for evaluating any treatment. Your critical thinking skills serve you well on a personal level, as a teacher, and as a vital element of cpnhelp.org's conscience.  Yes, I mean "conscience," for beyond every dry summary of possibilities lies the question of whether or not a thing should or should not be done.  Surely, critical thinking is an ingredient in the formation of the best consciences.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSⁱ).  CAP since August 06, antivirals, heavy metals chelation, LDNⁱ, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgGⁱ/lactoferrin/IGF-1 booster, gamma oryzanol, astaxanthin.

Yes Marie. That was truly excellent. Thank you so much for taking the time and effort to put it together. What was even more excellent for me personally was that I actually understood it.

When I came here last Autumn, I printed off the handbook and, on attempting to read it, I needed a gibberish translator. It was like rocket science to me. I recently pulled it out and found it a most interesting bedside read!

And as you concluded, I do mention to friends and loved ones who worry about me after seeing me fail on so many previous MSⁱ rxs "Whatever its ultimate role in my MS, my body will surely benefit from getting rid of Cpnⁱ." That way I don't get anyone's hopes too high prematurely.

I am very grateful for your objective discussion. Thank you once again. Another cyber pat from me.

Began CAPⁱ Oct.06 for SPMSⁱ. Currently on Doxy/Roxy. No pulses as yet.

Like David, but at a less scientific level I have to admit, I read the for and against of treating MS with antibioticsⁱ.   I did not read the VU protocol until later, but I did get to read the opinions of M Hammerschlag and of course I was aware of the medical profession's views on MS.  

I had always wondered what were the triggers for the attacks, in the same way maybe as I always wondered why I had periods of baldness. Ella had been told that it was probably an accumulation of triggers that precipitated her relapses, and that no one could tell what they might be... At the time of my alopeciaⁱ diagnosis, antibiotics did not come into the picture, however they do now as doxycycline is one of the drugs used to treat it.

By chance Ella was with me at the beginning of her last relapse (Jan 2006) and I noticed a couple of things about the progress of this latest relapse, one it coincided with a bladder infection and two upon receiving two courses of antibiotics there was a plateauing of her symptoms.   As soon as the antibiotics were out of her body she went downhill again.   This is what led me to put the words multiple sclerosis and antibiotics into the Google box.

My decision to try to get her the antibiotic treatment was taken in the knowledge that there were no guarantees but also that we had very little else to choose from except maybe chemotherapy and interferon, in that light it was not a very difficult decision to make.

When we were encouraged to think outside the box a few weeks ago, I thought that a reliable test would be a great step forward, but all it would give us would be some certainty... We just have to wait a little longer for our certainty, but at least we have something to work with and maybe in time all the experience of the people being treated with a CAPⁱ will turn the tide.   It would be difficult to ignore improvement in 80 or more people doing the same kind of protocol, it would be difficult to think that wishful thinking could explain the improvements; whether MS is entirely caused by Cpnⁱ or a combination of pathogens, environmental and genetic factors, if a CAP makes the difference between life with or without disability then I would advocate it even if I did not know why it was working.   "Lets give the CAP a whirl."

Michele (UK) GFAⁱ: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagylⁱ at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSⁱ Wheldon CAP 16th March 2006

YEAH, Joyce & Marie

We must do what we have to do with the information we have now.

Be Blessed

Ruth

CFIDSⁱ/ME, FMSⁱ, IBSⁱ, EBVⁱ, Cpnⁱ (375 mg Metroⁱ, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatoninⁱ, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, NAC 1 gm

 Annette- The Cpnⁱ Handbook your bedside reading? A true Mad Capper now!

David- I think your risk analysis consideration might be usefully incorporated in the limitations discussion. After all it is the most critical issue for many in deciding between the unproven but low risk, and the higher risk (side effects) and uncertain return with most proven treatments. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSⁱ & FMSⁱ- Currently: 150mg INHⁱ, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tiniⁱ daily (Continuous protocol)

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

They <still> are giving ECT a whirl.  A close friend of mine's brother went through a 4 month episode of severe depression requiring 24-hour watch last fall.  As it dragged on the doctors suggested trying ECT.  They did.  Several.  Fortunately, they finally realized that he had the wrong mix of anti-depressants.  Getting the right drugs (and/or stopping the wrong drugs) brought him around.

Thanks for the wise comments.

Tom Vincent, Jr

CFSⁱ/ME, Chem Sns.  Colorado.  Start Doxycyclin 200mg (100 AM, 100 PM) on 6/5/07, found CpnHelp site 6/6/07, add NACⁱ 600mg AM & PM (already on most other supplementsⁱ).  Add Azith @ 250mg AM 6/17/07

As a mental health professional, there is a place, albeit a very specific one, for the modern version of ECT. Modern ECT is nothing like the old style shock-the-whole-brain. It targets more specific areas and utilizes much smaller current. For intractable depression it can be a God-send, and more rapidly effective. But it's a last resort, in my mind, to the many other solutions. Not one we should give a whirl to readily. 

CAPⁱ for Chlamydia pneumonia since 11/04. 25yrs CFSⁱ & FMSⁱ- Currently: 150mg INHⁱ, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tiniⁱ daily (Continuous protocol)