Nine Eventful Years

I've just put an update on my website. If I may I'll copy it here

Nine years ago this month the Consultant Neurologist to whom Sarah was referred, after a history and a thorough examination, took me to one side and told me to prepare for the worst. The disease, multiple sclerosis, was in a progressive mode and behaving very aggressively. He advised me to look round for a nursing home. Her career as a fine artist was over. He was very frank, and I respect this.

Nine years on, Sarah is walking, painting, drawing - in fact she is doing some of her best art. From time to time she sends the above Neurologist a print of her latest work. She has never received any communication in return. Now, were I a clinician with a duty of care to a person given a disastrous diagnosis who learned that the disaster had been turned around, I should be curious to know why. It seems that not all doctors have this approach. Some evidently put their professional gravitas above their interest in patients as persons. It is painful to say this, but it is true.

Comments

Many thanks!

It was my lucky day when I found your website David. Thank you for sharing your success in helping Sarah. It was a life line to me when no one had any answers for why I was so ill.

I try and share the CpnHelp site with all my new Lyme friends. They are so focused on Lyme and are not aware of Cpn. The antibioticsi they take for Lyme won't take care of a Cpn infection, while the antibiotics combo for Cpn will probably knock out Lyme. I think it did in my case.

As for all the ignorant doctors out there, they must be so insecure. I feel sorry for them.

Raven

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

"may your tribe increase"

Hi, David,

I think I can speak for all of us here, when we express our gratitude for your intelligent insightful interest in the people who do this protocol.

I like to think that pompous eventually implodes. All of us have seen it happen more than once in our lifetimes.   Sheer numbers of CAPi successes are probably the best weapon. and we're getting there.

Meantime, like Timaca wished for you, your  increasing "tribe" gives your research and knowlege ever more power: both yours and Dr. Stratton's. One day, we will not be the struggling minority AND we will have our lives back with quality and purpose.

I think Cpni is the foe and the medical industry is its military force! Wonder when and how  we could  negotiate with its generals??  Or if.     Perhaps a coups would be in order!

Thank you, David and Sarah!

MSmom    Betsy

 

It's amasing. Sarah lives

It's amasing. Sarah lives full life as she needs. We are all grateful to you David and Sarah you not only were succsessful in abxi treatment of MSi but you don't leave this success for yourself and you share this success publicly. And what's a shame inspite of your enormous effort to introduce this treatment there is little general interest in this and MSers still have to undertake the only successful abxi treatment on their own or have to look for a doc which is not easy for them.  In those years a MS cure should be somewhere else. But it seems the treatment is moving to abx but very, very slowly. Much slowlier than MS recovery while on abx. 

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

DavidYou will always receive

David

You will always receive only praise for yourself and Sarah from me.  Without your experience I would be dead or in a wheelchair with a feeding tube.

So many of us on this site, including me,  have been rejected and subsequently ignored by (I have gone through a long conversation with myself and choose NOT to write about it) some people such as the one of which  (correctly - about whom)  you speak.   But we will fiercely protect any and all who are brave enough, like you, to face the reality of this dilemma.  Thank you.

Rica

 

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

I'll second that.  I am

I'll second that.  I am reminded of the young therapy doctor (yes, doctor) who assessed my level of disability when I was first diagnosed.  He had a sister in law with MSi and regaled me with 'coping mechanisms'and how she was still able to lead a relatively normal life.  I wrote him, at length, an email directing him to DW's site and the Vanderbilt info.  He was not interested.

I am amazed at the thought processes - or lack of them - that allow so-called caring people to lose their basic sense of human decency.  Thanks for not being one of those people, David. 

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

Coping Mechanisms?

“Coping mechanisms?”  I suppose that I would have had to resort to these but once I started treatment I was determined not to so I would haul myself up our front step then all the way up to the top floor, come downstairs on my bum if needed, wall walk rather than use a stick indoors, anything to avoid coping mechanisms.  Before that I was totally in denial and thought I would get better in a month or so,  so I didn’t worry: I left that to David and thought he was worrying without reason.

The antibioticsi didn’t just work by themselves, though: they stopped progression but I had to work at getting improvements: my painting was awful at first but gradually it got better and my newly cleared mind made me able to think of even better paintings and drawings to do................. Sarah

A Journey through Light and Shadow

 

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

How sad that the doctor was

How sad that the doctor was not curious enough to learn what helped Sarah.  And how wonderful that Sarah got her life back (and had a husband who was willing to help find answers to her health issues!)

I appreciate the two of you being willing to think and act outside the box and share your story and successes with others.

May your tribe increase.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<