A gift for a neurologist

D W
Submitted by D W on Thu, 2015-11-05 11:32

                                                                                                                    4th November 2015

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

Consultant Neurologist

Bedford Hospital

 

Dear ----,

You saw Sarah Longlands, my wife, who had very aggressive secondary progressive multiple sclerosis, 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 Wheldon

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.]

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 MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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!

Image removed.

G.

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

―    Abraham Lincoln

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 ABX 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 CAP 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

D W

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

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]

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 MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 persistence.  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 abx 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 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

D W

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

I had a fairly "deep" conversation with Rick the other day, about where his MS may have taken him if we had not found out about CPN and the CAP 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 CAP 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

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 CFS/ME relapsed?

Started NAC Sept'14... 100mg Doxy Dec'14...  Roxi 13Dec '14 Supplements...

 

I will in 2050 but I don't think the neuro 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 Cpn according to David............Sarah 

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.

“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....

D W

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

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

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 NAC Sept'14... 100mg Doxy Dec'14...  Roxi 13Dec '14 Supplements...

 

hi,

i suffer from SPMs. 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 CAP protocol. My GP advised me that she can only prescribe 2 weeks of ABX. i felt an overall sense of improvement which I attribute to the ABX. I have not been able to get any ABX so could you please help me. 

Thank you

Yonas

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 MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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

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.

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 antibiotics" (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.

Image removed.

G

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

―    Abraham Lincoln

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

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.
D W

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

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 SPMS 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 (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

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 CAP 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

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

I am sure his poor ego was damaged Image removed.. 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 people as well, one who lives not far from us, but who has the same opinion of the man and also of the main MS expert at Cambridge, our neuro'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 antibiotics, 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 rrms (which could well go terribly wrong) so progressive people are just unfortunate in his eyes...................Sarah

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.

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

J R

I've been looking through the CPN 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

D W

Three months on, and not a response.

I grieve.

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]

I'm sure you do, DW.  Image removed.

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