English and Australian Mavericks

This was shown on ABC Australia on August 23rd:

http://www.abc.net.au/catalyst/stories/3572695.htm#comments

It has caused a deluge of interest in Australia about the treatment of MS with antibiotics. It was filmed in this country back in December 2010 and Australia in June 2012. I am the English patient: you might be interested.

wow. Very interesting thank you for the link.

How are you?

Gillian

Hi Sarah,

I watched Catalyst here in Australia last week and had very mixed views about this segment. Obviously I am glad that your husbandā€™s theories were of benefit to you but I do find it frustratrating when a couple of incidents such as yours are then touted as a ā€œcureā€ for MS as Catalyst did. As Australiaā€™s premier sceince show it is pretty poor science to take what is after all anecdotal evidence (however spectacular) and hold it out as a beacon of what may prove to be yet another avenue of false hope.

As always we need evidential based medicine to prove these theories, not a couple of self proclaimed mavericks tossing home spun, unproven ideas out there.

I sincerely hope you continue to enjoy improved health but I am not yet convinced by your husbandā€™s theories and will need to see a far larger trial group and a far more rigorous testing of the theories before I can give it any credence at all.

Cheers,

Belinda

Poor science?

Best not to tell that to the team at Vanderbilt University Medical Centre!

Here is a link to my husbandā€™s website:

http://www.davidwheldon.co.uk/ms-treatment.html

He is, by the way, an FRCPath, an expert in using antibiotics and someone who has also trained in neuropathology at Oxford under the late David Oppenheim. So hardly a self proclaimed maverick tossing home spun, unproven ideas!

I and the many other people who have benefitted from this treatment, did not have time to wait for clinical trials to be held. When I started I had become so bad that I could scarcely do anything but now, nine years later, I can work all day at my painting. Funnily enough, although it is now nearly five years since I finished taking the antibiotics, I am still experiencing subtle improvements.

I donā€™t want in any way to send people along avenues of false hope, but would have thought that there are enough of these avenues in the realm of ā€œevidence based medicine.ā€

Sarah

Hi Gillian,

I am very well, thank you for asking. You might also like to read the link to my husbandā€™s website: it is very interesting and full of evidenced links.

Best wishes,

Sarah

Isola, your husband is fortunate that you are so vociferous in your support of his theories.

Professor Zamboni would no doubt have appreciated such support from his wife.

The link to this site doesnā€™t work for some reason:

Multiple Sclerosis: a chronic infection If this new link doesnā€™t again, you can cut and paste it, or just type David Wheldon and multiple sclerosis into Google and it will appear near the top.

As Belinda says, Catalyst is Australiaā€™s premier science show, but it is on prime time television and so aimed at the general public so it is kept simple and understandable, with no room for indepth theorising. Far better to keep more peopleā€™s interest, then some people can investigate further.

When I first started treatment, I didnā€™t think that it would work, but I was quickly surprised. After 20 years of things not working and now a further nearly nine years of no new MS symptoms, it is not surprising that I am vociferous in support of my husband rather than my neurologist, who advised David that it was time to be looking for a nursing home for me.

Sarah

Thanks Sarah,

I am still in diagnosis, but I have to admit I have been so ill for the last few months that I would have done exactly as you and your husband did .

The whole episode for me started with the most horrendous upper respiratory infection that I picked up abroadā€¦so I dont think this is a massively difficult concept for me to grasp.

I always do like to look at other opinions, and I shall indeed look at your husbands website.

May your good health continue, and continue to enjoy it.

Gillian

All very interesting. I hope lots more will read this and find out more. R

There are lots of people world wide treating with the combined antibiotic protocol mentioned in this TV programme. Yes itā€™s unorthodox, but many of us were offered no alternative by mainstream medicine and like isola were destined for the nursing home. Maybe my improvements are not real but my GP has seen them too, perhaps he is also suffering from the placebo effect?

It is a shame that clinical trials look highly unlikely because there is no profit to be made from prescribing out of patent drugs for anyone - except MS sufferers.

If anyone is interested to find out more there is a hugely informative website at <a href=ā€œhttp://www.cpnhelp.orgā€

Surely, the real point here is that What Dr Wheldon in proposing is NOT another treatment for MS, BUT a cure.

As such, it should be considered as an intervention, rather than a medication to relieve the symptoms.

The rules for new interventions are different. That the combination of antibiotics patented by Mitchell and Stratton has been used to treat other diseases, should allow the same intervention to be used for MS without a lot of waffle about trials. After all, it did not take two years of clinical trials before a certain Dr Barnard was allowed to carry out the first heart transplant - and no drug company has an interest in that technique.

The only real problem would be obtaining a sample of early-MS patients to try the intervention on (and coming up with a protocol that would satisfy the Ethics Committee at whichever hospital it was to be carried out at).

Having said that, one must also wonder at the approach taken to get publicity for the idea: signing up for this forum, and immediately plugging and Australian TV pop-science program is a trifle unusual.

Geoff

1 Like

ā€œHaving said that, one must also wonder at the approach taken to get publicity for the idea: signing up for this forum, and immediately plugging and Australian TV pop-science program is a trifle unusual.ā€

Geoff, really! For your information I first posted here about six years ago. I soon got irritated and stuck with ThisisMS and cpnhelp. I signed up again for the simple reason that certain people with active MS might be interested.

Talking about wondering, I might wonder that the second person to reply to my post was an Australian moderator who had seen the programme at home herself!

Sarah

Hello Speedbird: long time no see!!

Sarah, Belinda isnā€™t an ā€˜Australian moderatorā€™ . Sheā€™s just another person who has MS.

Belindaā€™s MS has been very severe she and has had quite an awful journey with it. Right now, sheā€™s in hospital having had a very close shave with 3 different types of pneumonia. As one of her e-pals, I and others were very worried about her last week.

Itā€™s so easy to come here and make assumptions - that we are all somehow in the pockets of ā€˜big pharmaā€™ or are against trials. You couldnā€™t be more wrong. Do not make assumptions about people who you donā€™t know and havenā€™t taken the trouble to find out about. Some of us here think Belinda is one of the very bravest and most courageous people in the world and kind and sympathetic along with it. We love our Belinda. A single mother who is very disabled and who takes part on this board because she works nights as a vetā€™s on-call nurse.

Ok, Iā€™m sorry for making assumptions about Belinda: I hope she gets over her pneumonias soon.

I might ask you not to make assumptions about me as well: Nowhere have I mentioned ā€œbig pharmaā€ and personally I a not against trials: I just couldnā€™t wait for one myself because at that time I was the one who was too ill.

Donā€™t worry about seeing too much of me though, because in a few days I will be too hard at work myself.

Sarah

Every cloudā€¦

I am painting some clouds at the moment which are all dark and stormy with a beautiful streak of lightning.

I donā€™t half get confused about ā€˜curesā€™, Iā€™m glad antibiotics worked for you Isola, have many other people also been cured by using your husbandā€™s antibiotic regime and how did they refer? Can webuy the antibiotocs used over the internet?

Iā€™ve been thinking about going for CCSVI (although the thought of knives cutting into veins terrifies me) or LDN, thereā€™s no ā€˜approvedā€™ drugs I could take as my MS has pushed me right over the hill, treatment wise (except for pain killers), thereā€™s always someone pushing their own ā€˜cureā€™ on here from snake venom to tapeworm patches.

My own daft theory is that there are many ā€˜causesā€™ of MS, and therefore there need to be many ā€˜curesā€™, each one tailored to the individual depending on what triggered their symptoms.

I donā€™t mean to cause offense but could it be that you just eventually recovered from a severe relapse over the course of time that you were given the antibiotics? That did happen to me in the early days of MS, I could be severely ill and in relapse for months and months but gradually my body would recover with rest and Iā€™d be back to a level of normality.

I often wonder if this has happened to some of the people who are magically 'curedā€™by some of the more outlandish remedies, time = equals recovery for some of them. The others have assumed that their alternative treatment hasnā€™t worked and the charlatans have pocketed the profits :(.

Those of us with no other hope are sitting ducks for nefarious individuals promoting ā€˜the cureā€™,at a cost.

Iā€™m certainly not suggesting your husband is a charlatan and would be interested to at the long term statistics from antibiotic therapy e.g. how many were cured, from and to what degree and how many ā€˜stayedā€™ cured for months, years afterwards etc.

Best wishes to you and Dr Whelan.

Fanny x

Mmmmmmmmmmmmmmmmmmmmmmmmm

ā€¦antibiotics, CCSVI, stem cell therapy, LDN, HBOT, snake venom, parasitesā€¦

How does one decide how to spend oneā€™s money?

I have just read your story on your husbandā€™s website.

I have a simple explanation for why his concoction worked for you: your neuro was wrong.

Benign MS / mild RRMS which suddenly becomes aggressively progressive after a ā€œprolonged upper respiratory infectionā€ and then miraculously improves with a load of antibiotics?

That isnā€™t MS! What it is is benign MS / mild RRMS with an infectious demyelinating disease on top. Take away the latter and, lo and behold!, (if we arenā€™t careful) we think we have a cure! Which of course we donā€™t - well, not for MS we donā€™t.

Did it ever occur to you that you werenā€™t actually treating your MS?? That perhaps it was plodding along quite happily when some opportunistic infection decided to muscle in on its territory?

Of course, weā€™re assuming it was MS in the first place. Can we be sure of that even?

Too many questions. Iā€™m with Belinda - until there are some proper data, Iā€™m not buying it.