A gift for a neurologist

                                                                                                                    4th November 2015

Dr ---- -------

Consultant Neurologist

Bedford Hospital

 

Dear ----,

You saw Sarah Longlands, my wife, who had very aggressive secondary progressive multiple sclerosisi, in 2002. You gave a dire prognosis, saying that her days as an artist were over. You advised me to find a nursing home for her.

I didn’t follow your advice, but instead treated her for a chronic infection with Chlamydia pneumoniae. She has since recovered. The therapy has worked. I enclose a print of a water-colour which was painted by Sarah about a month ago. It is called Tryst. Please enjoy it.

With best wishes,

 

David Wheldoni<

Consultant Medical Microbiologist (retd)

 

[Here is a link to the image http://www.davidwheldon.co.uk/tryst.jpg< It is very dimensional, the original even more so.]

Comments

I'm sure you do, DW. 

I'm sure you do, DW.  Cool

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

Oh

what a beautiful picture!

Four months on, and not a

Three months on, and not a response.

I grieve.

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

I've been looking through the

I've been looking through the CPNi archives for a while now, and this post reminded me of a Bob Dylan song that has been on my mind recently with regard to the medical profession. Thought I'd share it even though I missed the boat somewhat on this thread...

Disease of Conceit - Bob Dylan

There’s a whole lot of people suffering tonight
From the disease of conceit
Whole lot of people struggling tonight
From the disease of conceit...

Conceit is a disease
That the doctors got no cure
They’ve done a lot of research on it
But what it is, they’re still not sure...

Thought it rather fitted this topic. God knows I've seen enough of it in the last 20 years...

Anyway - here is the full text (and a clip from the song) is here:

http://www.bobdylan.com/us/songs/disease-conceit

A brilliant post: d'accord

A brilliant post: d'accord

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

No Answer was the Stern Reply

Exactly a month ago I sent a letter (paper) to the neurologist consulted by Sarah thirteen years ago. I sent it by the hospital internal post, which is very reliable. To recap, here is the text of the letter:

 

4th November 2015

Dr ---- -------
Consultant Neurologist
Bedford Hospital

Dear ----,

You saw Sarah Longlands, my wife, who had very aggressive secondary progressive multiple sclerosisi<, in 2002. You gave a dire prognosis, saying that her days as an artist were over. You advised me to find a nursing home for her.

I didn’t follow your advice, but instead treated her for a chronic infection with Chlamydia pneumoniae. She has since recovered. The therapy has worked. I enclose a print of a water-colour which was painted by Sarah about a month ago. It is called Tryst. Please enjoy it.

With best wishes,

David Wheldoni<i<

Consultant Medical Microbiologist (retd)

 

[Here is a link to the image http://www.davidwheldon.co.uk/tryst.jpg< It is very dimensional, the original even more so.]

Well, I have had no reply in a month. I don’t know what I find more worrying:


1. He has no interest in the recovery of a patient who was under his care and who he expected to fare very badly. Were I, as a doctor, in his position, I would be overjoyed to be shown to be wrong. I think Sarah, by her recovery, damaged his ego and wounded his sense of professional gravitas.

2. He is presumably seeing other patients with SPMSi and is presumably condemning them to the same perdition he prophesied for Sarah.

 

Well, that’s the situation. It was a terrible consultation. He kept Sarah waiting months for an MRI, and was angry when it was brought forward at the request of a colleague. When he showed us an MRI it wasn’t hers. It was an unnamed, scratched film that he clearly carried about as a theatrical property. When he saw me looking closely at the thing he snatched it from my hand. He offered Sarah nothing, not even B12 injections. He refused to look at the improvements on the follow-up MRIs.

 

That’s how things stand. I can only say, thank goodness, Sarah, you married me and not that accountant —

 

 

 

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

Oh Yes, thank goodness You

Oh Yes, thank goodness You were able to rescue Sarah.

I am sure his poor ego was damaged Wink. I wonder if he has secretly taken your good medical advice and is treating patients properly, on the sly......at least I hope he is smart enough to do that....

Luckypenny, he saved many other

Luckypenny, he saved many other people as well, one who lives not far from us, but who has the same opinion of the man and also of the main MSi expert at Cambridge, our neuroi's boss.  I hate to think of the other people who might have been rescued but were content to go along with a neuro's prognosis.

I'm afraid the man is not smart enough to treat people on the sly: as a neurologist he will know little about antibioticsi, seemed interested for a while then turned away, presumably having been warned by the big boss, editor of a very famous book about neurology.  The big boss is hoping for fame and glory in his near retirement, having found THE big new treatment for rrmsi (which could well go terribly wrong) so progressive people are just unfortunate in his eyes...................Sarah

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.

Isn't that just awful to let

Isn't that just awful to let your ego and fear guide you - may I be brave enough and safe from that....and how very unfortunate for those patients who do not advocate for themselves for whatever reason - probably "respect" for the elders lol. My neurologist and rheumatologist are very nice, but will not delve deeper and I have been the victim of a "reaming out" many times for haveing taken a different route.Shame. Glad you are safe, Sarah! XO Linda

There is no gaurantee that a

There is no gaurantee that a good education will result in an open mind!!  I have several appellations that apply, among them "idiot!" 

Sometimes, and very clearly in this case, quite the opposite.

You and Sarah are both very lucky to have found each other.

My Very Best & Highes Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

A gift indeed

“I am afraid that the experiments you quote, M. Pasteur, will turn against you. The world into which you wish to take us is really too fantastic.” La Presse, 1860

How much has changed in 155 years? Monsieur Wheldon I salute you....

Thanks!

The establishment really had it in for Louis Pasteur. Here's another quotation: 'La théorie des germes de Louis Pasteur est une fiction ridicule.' Pierre Pachet, professor of physiology, Toulouse (1872)

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

Shows what a total nonsense

Shows what a total nonsense the APRAH idea of persecuting doctors who are practising differently to their peers is...

The idea that you can practise medicine acording to "guidelines" ONLY... do they not understand what the word "guideline" means?

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

Please help me to get ABX

hi,

i suffer from SPMsi. I was diagnosed in 2008. I am now in a wheelchair, I can't do very much. I started reading Dr Wheldon's work and spoke to my GP about the CAPi protocol. My GP advised me that she can only prescribe 2 weeks of ABXi. i felt an overall sense of improvement which I attribute to the ABXi. I have not been able to get any ABX so could you please help me. 

Thank you

Yonas

Yes, what country are you in?

Hi!

It is easier to get antibioticsi much more easily in some countries as compared to others. I too would be interested to know what country you're in.

 Smile

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

SG, has Yonas written to you

SG, has Yonas written to you yet? He is in the UK...........................Sarah

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.

I will compose and send it via a private message later on.

Hi Sarah!

 

As yet, I have not heard anything from Yonas. It could of course be that this new person is not familiar with how to send a private message via this site. Perhaps I will just compose something and send it via a private message later on. Obviously that will be sent to her via a private message.

 

I guessed that this was a UK person when I read about the "No more than 2 weeks antibioticsi" (I know that there are other countries even worse than ours). Dame Sally has got them all doing as they're told; all singing the right hymn in the right key.

Smile

G

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Thankyou SG! He might just be

Thankyou SG! He might just be stocking up on the supplments I suggested first: hopefully he hasn't had second thoughts. Cry Sarah

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.

Yonas, I have only just seen your request.

Yonas, I have only just seen your request. We will try to help you by sending you information by private message.  It would help to know what country you are in.....................Sarah

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.

I don't even need a

I don't even need a translation of the French to understand how condescending that comment is.

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

hahaha I was gonna say something like that previously!

I thought the same. He might not even be there to see - and he will probably die  without admiting that he was wrong on what he did for life. What a bad end of life course. 

He won't even be ashamed of himself

Sarah, if would be good fun if you made a painting of you and David very old, hugging each other, each of you holding a walking-stick (?), and date it say: year 2050 or so. 

I will in 2050 but I don't

I will in 2050 but I don't think the neuroi will live anything like that long, although he is four years younger than me: he started at UCL the year I finished. He looks like he is full of Cpni according to David............Sarah 

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.

Lovely painting Sarah - wish

Lovely painting Sarah - wish i could view the original!

Nice neurologist note. Want to word one to the GP who told me I was healthy and just depressed when I caught whooping cough and CFSi/ME relapsed?

Started NACi Sept'14... 100mg Doxyi Dec'14...  Roxi 13Dec '14 Supplementsi...

PERFECT - WELL DONE DAVID!

PERFECT - WELL DONE DAVID!Wink

I had a fairly "deep"

I had a fairly "deep" conversation with Rick the other day, about where his MSi may have taken him if we had not found out about CPNi and the CAPi Protocol (an early demise).  Rick and I both understand that even now, with signs of stabilization, that there are no gaurantees.  Rick quoted this poem by Dylan Thomas - to explain why he is putting up such an exceptional fight:

Dylan Thomas, 1914 - 1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

____

Sarah - that is an awesome painting!! 

For all of the folks battling this nasty disease - MS and whatever else CPN might cause - "Don't go softly into the night" - battle and fight on!  At the same time - enjoy the beauty and wonder that life brings.  To have the opportunity to beat this disease is freakin' awesome!  Rage and joy entertwine.  Rage at the disease, joy that we may have found a way back to health!

My very best & highest regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

David, thank you.  You and

David, thank you.  You and Sarah are a wonderful pair of people - we who are here on this site applaud you both for your generosity, fairness, manners, and persistencei.  Sarah, this is another ray of warm sunshine in our lives.

I was going to stop there but I will say what my own wonderful, brave doctor (much like my own father) said:  "I have never met a "normal" neurologist.".  They have a problem.  In another post I repeated what my neurologist said when I was better after beginning abxi and went for my appointment.  "I expected you to be much worse.  Go away and don't come back - I don't want to see you any more".  Sad.

I am sure you did not intend to have a neurologist-bashing segment, so if you want me to take this out, let me know.

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

Katman:I can only say I

Katman:

I can only say I admire you. We have been through this together. If only you could lend us goats to crop our grass!

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

I'll bet you don't get a

I'll bet you don't get a reply, like I never do: the amount of expensive archival printing ink I have wasted on the man...........................Sarah

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.

Very tempting Norman!! 

Very tempting Norman!! (I don't know why this has come out in the wrong place!)  Sarah

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.

I don't suppose you've tried

I don't suppose you've tried doing a painting of this for him?

http://uncyclopedia.wikia.com/wiki/File:Head_up_ass.jpg<

It's called cranio-rectal

It's called cranio-rectal impaction. It's difficult to treat.

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

ROTFLMAO - "Rolling on the

ROTFLMAO - "Rolling on the floor laughing my anatomy off!!"

That guy has his head so far up his a** that when he whistles, he f*rts!

OR

He's got optical rectalitis - his optic nerves and rectal nerves are crosses so he can't see for sh**!!

His pose looks similar to the pose that the Neurologist that Rick "fired" to go with the Neuro at Stanford.  That guy held prescribing amyprya over Rick's head and refused to prescribe it unless Rick stopped his ABXi treatment.

Hard to breath, hear or see much that way.  I suppose it's an effective way to close your mind!  Or to get a LOT of privacy!

This just begs a few questions:

What the heck is that guy looking for?  If he pulls it out - will his head make a sound like a cork?

Will he be needing hair cream to slick his hair back?  I could go on.

Mackintosh - if the language in my post is too graphic - please feel free to delete it.

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

It is a beautiful picture.

Pictures can be painted using a variety different media – words, acrylic, oil, watercolour and so on – there is no such thing as “Best”. That said, watercolour seems to radiate a reality that comes from behind the picture. I really like that picture. The fat-faced neurologist that had the good fortune to acquire that very lovely picture would probably have stamped upon it in utter rage.

It is a beautiful picture. A beautiful picture of daffodils lit by moonlight. It beautifully illustrates just how wrong your fat-faced friend was. I’d have loved to have owned a picture like that … not as much as I bet you’d love to own a picture of Fat-face when he looked at his gift!

Laughing

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<