MediTest
Submitted by Jim K on Wed, 2007-06-13 08:24

Those of you who have read Marie Rhode's previous scientific review and discussion of the fault-lines in the existing autoimmune model in MS, and the arguments for infectious causes, especially Cpn, have appreciated the dedicated and rigorous analysis she has brought to the topic. Her discussion has made a real difference for people who have been given the standard medical schtick about MS as if it is fact, not theory.Now she has gone a step further and given us a lucid discussion of the limitations of our own model. As scientifically minded as Marie is, it urked her that our website did not offer a critique of our own approach here. She takes science and informed consent in patient care very seriously. The enthusiastic anecdotal reports for CAP treatment should not blinker intelligent adults to being able to take rational and considered treatment decisions. I laud her in taking this issue to task and providing us with such a high quality discussion.I would add that much of her discussion applies to CFS, RA, and any other CAP treatment, and should be read by all of us. It has been said before, but all of us here are engaged in an "N of one" empirical experiment. We are fortunate to be joined by others and have reports of real and significant progress. But we also need to keep our wits about us and understand that our approach is indeed an experiment. My thanks to Marie for exploring this in the true spirit of good science and healthy discussion.

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 ShadowStratton/Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Red

I agree, it definitely applies to the potential link between Cpn and Rosacea too.    Excellent work Marie.    Thanks so much (as always!)...On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

With almost all my time and energy being used in preparing for the Nationals, my postings have become very limited, but I need to add my little comment. Marie's essay clearly gives many facets of our pursuit of and preoccupation with saving ourselves from whatever disease has us in its clutches. It is one of the difficulties of life and those of us who are living it to be objective. Thank you, Marie: this should be required reading.

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

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Gee thanks guys! I appreciate the cyber pats on the back! It was difficult to get it right but I felt it was important. Unlike some other sites that actively remove anything that questions the approach, I wanted to be sure we respected people's ability to make an informed decision themselves without us paternally telling people which side is right just because we have come down on that side of the argument. I mean, in my mind CPn for MS is all but proven, but I do not need or want others to abdicate their thinking to me and have me tell them what is right, they must do that themselves!
thank you for the affirmation that it is worthwhile reading.
marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplements.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

D W

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 EDSS 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 SPMS: deadly - doxycycline: one of the most harmless antibiotics 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. D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment. No antihypertensives. BP this am 115/75]

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Doxy for MS = Karo syrup for constipation. At 5 am Dr R (pediatrician) got a phone call from a worried mother "My child is constipated - oh, what to do?" Answer:.......and if you are worried this minute, take the child to the ER, if not bring her to the office at 8. At 10 Dr R called and the mom said "Oh Grandma said to give her Karo syrup, so we did." Dr R. said "Maybe you should call Grandma first next time"!

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

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

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 CAP 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 (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, gamma oryzanol, astaxanthin.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/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 MS rxs "Whatever its ultimate role in my MS, my body will surely benefit from getting rid of Cpn." 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 CAP Oct.06 for SPMS. Currently on Doxy/Roxy. No pulses as yet.

Began CAP Oct.06 for SPMS. 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 antibiotics.   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 alopecia 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 CAP 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 Cpn 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) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

YEAH, Joyce & MarieWe must do what we have to do with the information we have now. Be BlessedRuthCFIDS/ME, FMS, IBS, EBV, Cpn (375 mg Metro, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, NAC 1 gm

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

 Annette- The Cpn 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 CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)

Marie, I'd rate this a ten, but we still can't do ratings! Thanks so much for recognizing this was necessary and then doing something about it. I fall into the 'prejudiced' group; it saved me. I know it works. Let the scientists go out and prove it at their 'leisure' but at least I have my life back while they're doing so.
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

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

Well, I tried to rate Marie' article a "10" but for some reason got an error message from the site. You won't find such lucid and balanced commentary on any other health site.Lots of work went into this piece and it lays out the facts and suppositions for anyone who is considering treatment.
Excellent work!

Raven
CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Gee thank you everyone. I added a link to this thread to the limitations page and also copied DW's thoughts at the bottom of it for added contemplation. The comments and ideas here are impressively deep and well considered. This community is really cool! Thank you!
marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5. Currently on: Doxy 200, Azith 3x week, Tini cont. since April '07, all supplements.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

D W

Thanks, Marie -You are right; this is a great community, and thanks to you and Jim and Bleu. I personally think the balance is excellent. I'm touched that you should think my post worth translocating; everything in that little description of the ward-round is true, if not all at the same time. Is the expression 'to give it a whirl' known in the US? It began life in England in the 19th century during the craze for the waltz. To 'give something a whirl' is to metaphorically take it round the dance-floor to see what it's capable of.  I find figures of speech like this hilarious; this one because you can only dance with another person and yet this expression is always used of techniques and ideas. Actually, one of the things I really appreciate about this site are the witticisms. To paraphrase Annette, I love 'em.D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment. Not on antihypertensives. BP this am 116/76.]

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

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

Tom~West USA. CFS/ME, Chem Sns., ADD. Adderall, Doxycyclin 2x100mg since 6/5/07, found CpnHelp site 6/6/07, add NAC 600mg AM & PM (already on most other supplements). Azith @ 250mg since 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. CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)