English and Australian Mavericks

Everyday living
21

Fanny, no offense taken! People who live in Great Britain with a firm diagnosis of MS have to write to my husband and ask to see him. If they live in Australia or New Zealand they can contact Paul Thibault who does now treat people just with antibiotics, not just ccsvi.

You can tell that David is not a charlatan because he won’t charge: you jut have to pay for the antibiotics unless your GP will write a prescrption. Some will.

Now, my diagnosis was aggressive secondary progressive MS and the neurologist actually said, with a pass of the hands, that my life as a professional artist was at an end. He didat least, look aggrieved. Ten years earlier I was at the stage where I would eventually just “get better.” Now, though. I have had no MS symptoms since starting treatment. As a patient I do just have to believe that I have finished with the disease. As for the periods of time you ask about: best to ask me in another ten years or so, when people have been doing the treatment for longer. Along the way ask the people with relapsing remitting disease who have been taking campath or tysabri as well. David won’t use the word “cured” because there will always be some deficits in progressive disease. How many deficits depends on the individuals disease: I very much doubt that I will ever be able to go on tough hill walks of over 25 miles again or cycle a hundred miles a day. I wish that I could, but one has to be realistic. I’m happy because I can work again: nine years ago I believed my neurologist.

Sarah x

22

Right, Rizzo, I’m sure that my Queens Square trained neurologist wll be delightedto be told that he was wrong.

23

Dear Sarah,

I wasn’t making assumptions about you. It was your dismissive tone in reply to Geoff’s answer. In the last few years this site has been fortunate - there are a few people here with MS who are either PhDs or have Msc’s in neurosciences and they help a lot.

Like any scientists they like to debate. Peer review can be very tough and contentious. If you post about your experience, then it’ll be read and maybe debated. It’s a free board, with all types of people posting, from just-diagnosed people who’ve only just discovered MS, to those who’ve lived with it a long time.

Most people are just looking for help and advice and sympathy. It’s not like TIMS which seems to have degenerated into one huge promotion for CCSVI, with no place for the poor average person, with RRMS who maybe has been on a DMD for a few years and just wants to read knowledgeable discussion.

I’m not sure what you mean exactly, when you ask how people on Campath or Tysabri are in ten years?

I do know of one person who had Campath treatment ten years ago and who is fine. Not ‘cured’, but no longer living with the threat of disability and with no more MS symptoms in all that time.

I’m afraid I confused your answer with that of your friend. Who wrote “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.”

We read that statement so often here - and it isn’t correct. The vitamin D3 information from new research is one such example.

There’s room for all views - just so long as they aren’t being touted as a ‘cure’, which is apparently what the tv programme called the Wheldon Protocol. I know you didn’t write that and that your husband isn’t claiming this. You can cure the CPN, but not the MS, I guess. Belinda is the only person here who saw the programme. When something is incorrectly hyped as a cure, then people are going to disagree.

There’s a better range of views here than on most boards. There are about 300 people on LDN. Some on LDN+a DMD and a few on LDN+Tysabri. There are people who follow a strict diet. Those who use hyperbaric oxygen, those who are on Tysabri, those on nothing at all, as nothing is being offered.

In that spirit, I’d like to ask a question. Would there be a possibility of a very good result from your husband’s treatment protocol along with one of the DMDs (beta-interferon or Copaxone)?

Is CPN treatment/intervention to treat an underlying infection that causes progression?

What is the position as regards relapses?

Thank you for reading this,

best wishes,

K

ps, I’m one of those who does try things. I follow a diet that helps to control my nerve pain, my relapses are much reduced with Rebif (without nasty side effects), I was taking it with LDN, but I have ceased to use this as I’m having tests for an unrelated condition. I came to live in a climate that helped me to live a normal life. I was housebound in the UK, but not here in Galicia and I benefit from a lot of D3. It’s reduced my arthritis inflammation and I believe it helps with the MS.

24

First of all, let me say that I am delighted that you are doing so well and continuing to work - it must be wonderful, especially after what you expected your future to be. However, I continue to believe that there are too many unanswered questions to buy into your belief that your improved health is a result of antibiotics transforming your MS.

Second, my reply to your Queen’s Square comment:

I’m sure he wouldn’t - no one likes their mistakes being pointed out to them. However, no one is infallible and even brilliant neurologists (no matter where they are trained!) make mistakes. It certainly wouldn’t be the only time that a neurologist from Queen Square has made a mistake.

Which leads me to ask if you are therefore saying that you have no corroboration that your new symptoms were to do with MS and not something else?

Have you considered how (un)common it is that someone who has had very mild RRMS for more than 10 years experiences a sudden increase in activity to the extent that they are told that they are in a “rapidly progressive stage of the illness” and to start looking into nursing homes? In other words, how many people’s MS switches from benign MS / very mild RRMS to very highly aggressive SPMS?

I wonder how this compares to the chances of someone with MS getting ADEM after a respiratory infection?

"Acute Disseminated Encephalomyelitis (ADEM)

Acute disseminated encephalomyelitis (ADEM), also called noninfectious encephalitis, constitutes one-third of all known cases of encephalitis. It is not caused by a virus, although it most often develops in patients 2 - 3 weeks after recovery from a viral illness. (It does not affect children under 2 years old.) Damage to nerve cells in such cases is caused not by the viral infection, however, but most likely by an autoimmune reaction, in which the body’s immune system attacks its own brain tissue.

Acute disseminated encephalomyelitis has been reported as a rare complication of childhood illness, including chickenpox, mumps, or measles. Vaccination reduces these risks to nearly insignificant levels. It is a complication of the rabies vaccine in one out of 30,000 cases. Nonspecific respiratory infections are now the most common causes of ADEM, but such cases are also extremely rare.

The inflammation occurs predominantly in the white matter of the brain rather than the gray matter (the usual target of infectious encephalitis). The nerve cells do not die as they do in a viral infection. Rather, the nerve cell coating (called a myelin sheath) is partially destroyed in much the same way as it is in multiple sclerosis. Indeed, the two conditions may at first be difficult to distinguish. Recurrences may occur several months to years after the initial episode." (http://www.umm.edu/patiented/articles/what_causes_encephalitis_000096_2.htm) [This was found with a very quick google; there are bound to be better sources.]

My points illustrate the reason that proper trials are needed: case studies are just not good enough; there are too many questions.

I’ll happily pop antibiotics till I burst if proper trials indicate that it would help me. Until then? Nope.

25

Would it not be a good idea for the MS Society to fund trials? Or am I, in my naivety, being too simplistic? R

26

Yup; sorry randrews too simplistic. The total income of the society per year is around £25 million. If they stopped paying wages; research into Stem Cells in fact all the MSS do you might just have enough for a double blind; controlled trial.

As was said earlier; just like LDN; these antibiotics are out of Patent so no drug company will spend money on research. Please don’t think I’m having a dig a drug companies; this is just plain business sense.

So just like LDN (which I think is the best drug for MS) will have to run the gamut of not having the medical professions approval.

My personal opinion is I would sooner the antibiotic answer than CCSVI; but that is purely my opinion.

George

27

As usual, it is interesting to read the different views on this topic. MS, as we all know, is such a varied illness. Of 100,000 people estimated to have it in the UK I would suggest that probably no 2 are the same in terms of disease outcome (although we have many symptoms in common). I had mild symptoms of what turned out to be MS 35 years ago. I was then very healthy for the following 15 years. Then had a big attack, got diagnosis, was put back on my feet by IV steroids and felt great. But that seems to have been the start of SPMS as I’ve been gradually deteriorating since. Now I can still walk very short distances with a walker and have many unpleasant symptoms. I follow Jelinek’s OMS program. His message boards are filled with different ideas about MS apart from diet, vit D, exercise, meditation, candida overgrowth, psychological barriers, CCSVI and different people swear by different approaches. It makes me think that MS really isn’t just 1 illness but many which have been grouped under 1 umbrella because of similarity of symptoms and evidence of CNS damage via MRIs. My reason for posting this is that I don’t feel I have anything to lose by trying an antibiotic approach to the illness. I have no other hope of improving (I’m hoping that following the OMS approach is at least stabilising me??). It may not work but seems pretty harmless (obviously taking lots of antibiotics is not ideal but nor is taking DMDs). I have recently moved to Spain where I’ve met a sympathetic GP who may be willing to explore this option. If I start on this treatment I will keep you posted. I’m realistic enough to be aware that this treatment may not work. Let’s see. Best wishes, Karen

28

Karen (wilx),

I agree - the more you read, the more you realise that MS is very complicated and from a myriad of causes and triggers. I asked Sarah some specific questions about RRMS and relapses and she hasn’t answered yet…I’m hopeful and I’m fairly sure that my lovely GP would be sympathetic as well - or at the very least, interested.

best wishes,

K

29

http://perfecthealthdiet.com/2010/07/multiple-sclerosis-a-curable-infectious-disease/

Interesting.

30

I took a quick look at the list of references at the bottom of the link provided by stevie, the bottom two were reported studies on an antibiotic combined with a DMD:

Metz et al (2009) was Minocycline+Copaxone

Minagar et al (2008) was doxycycline and a beta-interferon

Both look promising. No question about it.

So, one quick conclusion is that there is probably something in the notion of one or more antibiotics in combination with/without a DMD, as an MS treatment. The question is why, if there have been formal reported trials that suggest that such a treatment shows promise, has the notion not been taken forward?

It does not work for everyone (see Wheelchair Kamikaze.com for example) and researchers at UW-Madison Wisconsin) were looking at Minocycline in animals over 10 years ago. They referred to a proposed trial on humans in 2002, but Marshall (http://marshallprotocol.com) refers to the Canadian trial as a failure.

Perhaps, just perhaps, the real truth is that the “anti-biotic” approach does not work often enough to be taken up by the Medical community at large.

Geoff

31

Thanks for the link, Stevie and who knows, Geoff? I guess there are so many strands of research around that things often don’t get joined up. As for this approach not working for everyone, it seems that there are some treatments/approaches out there that work for some people and not for others which is why I made my speculative comment about MS not really just being one disease (or maybe it’s more about not having a single cause). Lapreguiciera - do keep us updated if you decide to go for the antibiotic route. All the best, Karen

32

Nice Informaton.

Thanks for share.

33

Geoff’s reply was pretty much what I was going to say. There have been some promising results with Minocycline but not enough to encourage any Pharma to take it up as a DMD although it has been trialled for exactly that purpose. Caution has been expressed because it has been seen to worsen ALS (a form of motor neuron disease) and it is not recommended that it be taken off label for MS out side of clinical trials until more is known about this impact.

But the main point about Minocycline is that its potential benefit in MS comes not from its antibiotic properties but from its anti-inflammatory and neuro-protective properties. Which sort of makes the whole Chlamydia Pneumoniae theory a bit odd.

http://www.medicalnewstoday.com/releases/87541.php

But then I find any “disease” that claims to be the answer to any number of other diseases a bit suspicious. We have seen it with Lyme Disease and Morgellan’s Disease and I am sure there are many others. But when a disease claims to have a cure that can fix many diseases simultaneously from the one treatment I am always a little bit suspicious.

For example the Combination Antibiotic Protocol espoused by David Wheldon can theoretically cure as many diverse illnesses as “Multiple sclerosis, Chronic fatigue, Cardiac disease, Interstitial cystitis, Prostatitis,Crohn’s disease, Inflammatory bowel diseasei, Alzheimer’s disease, Asthma,Arthritis, Fibromyalgia, Chronic refractory sinusitis, Macular Degeneration, and others.”

http://www.cpnhelp.org/

Now this is quite remarkable given these diseases all have quite different aetiologies’, effect different body systems and many of them have nothing in common with each other. To me this raises the red flag of “if it sounds to good to be true, it probably is….”

There is no such thing as a magic bullet for all diseases. Just ain’t gonna happen, no matter how much we are discouraged by the illness we have, no matter how angry we may get by the apparent lack of progress towards a cure by “Big Pharma” and no matter how much we want things to be different.

I fear that too often “as with so much of quackery, it’s hard to tell whether (some of these doctors are) just another “lone, independent investigator” who thinks (they’ve) discovered something new and marvellous while toiling away in his basement, or another online con artist looking to bilk a few dollars out of some gullible and desperate patient wannabes. I never know quite which one to hope for—the kook or the crook—“

http://relative-risk.blogspot.com.au/2012/04/real-quacks-imaginary-bugs.html

I don’t think Dr Wheldon is a crook; far from it, but I do wonder if he doesn’t fall into the second category.

The trials into minocycline are still under way in Canada although with the caveat of caution attached to them due to the adverse findings in Motor Neuron Disease and there are other trials also under way and that have been completed.

Minocycline certainly does have neuro-protective qualities but whether to the degree that warrants making it a standard DMD is still a question on the table. Thus the ongoing research. As I said in my earlier post, I will look at this whole issue with scepticism and not be swayed by anecdotal evidence until the evidential facts are in from the trials.

That is just me. I prefer my medicine to be served up in a nice dry, scientific, totally rational manner unswayed by “testimonials” and “personal stories”. Interesting as they are, at the end of the day they are meaningless because they apply only to one or two people. I need to see hard facts that can be duplicated over and over before I will put my faith in it.

Cheers,

Belinda

PS Isola, I have no idea what made you think I was a moderator or in any way have influence over these Boards. I am just another person with MS and actually took time from my hospital bed where I was ill with pneumonia to respond to your post. I was a bit surprised by the undertone of aggression implied by your answer which I really felt was quite unwarranted. Read through my other past posts and you will se that I haven’t treated you any differently to any one else. Where I see dubious anecdotal evidence being discussed as factual evidence I always tend to hop in and counter it with an evidential based arguments to the best of my ability so don’t take it personally J

34

Hello Sarah,

Would I be able to see your husband in the UK and is there a charge for that or can my GP refer me?

I’ve read a bit more about this and I don’t think I’ve had chlamidia although I do get cold sores when I’m run down.

Would the antibiotics still work? I’ve had lots of penicillin over the years for bronchitis, are the MS antibiotics different or higher doses than ‘usual’ ones prescribed for ordinary infections?

Could I just buy the antibiotics over the internet and treat myself or are they different for different people.

There was someone on here a while ago saying that you needed to treat underlying candida to get rid of MS - is this the same kind of therapy? I think that was more about diet than antibiotics though.

Many thanks,

Fanny x

35

Belinda, that just about takes the biscuit! I’m sorry that you were ill and I’m sorry that I thought you were a moderator: it was just that you were the only person who had a picture attached to her name at the time. However, I really dislike you saying that I appeared to have an underlying tone of aggression.

Don’t confuse my husband with a lyme-nut or a morgellanite: he is just as critical of them as anyone here. Also as a Fellow of the Royal College of Pathology he doesn’t fall into either of your categories.

Now it isthe fifth of September and I am running out of time, so I won’t post here any longer. I will though, send private messages to the two people here who are asking sensible questions: lapreguiceira and Fanny.

Best wishes ti everyone,

Sarah

36

Isola, my points are perfectly sensible too even if you disagree with them. And being a FRCP doesn’t mean that someone is automatically immune from bad science.

Why can’t you reply to Fanny and lapreguiceira on the Boards publically rather than by PM? They asked their questions publically so surely we are all entitled to hear your answers and be enlightened and learn.

And what is that happens on the 5 of September that prevents you from posting after that? Do you turn into a pumpkin? No seriously, why are you time limited? Why can’t you keep posting?

Belinda

37

In what way does being a FRCP make someone immune from error, especially in the absence of objectivity?

And why should we believe someone who runs away when they are asked basic questions like do you have evidence that the sudden increase in symptoms/lesions was actually due to MS? You are touting a cure for MS. It’s kind of important to know if it’s MS you actually treated! But you choose not to answer this question because it’s not “sensible”?! LMAO!

The only defence against the numerous “cures” touted on the internet is skepticism.
Consider the data, not the sales spiel.

And if they can’t answer questions or show that the data were acquired with reliable and valid methods?
Run a mile. (Just like they tend to do.)

38

Hah, no Belinda: nearly two months before I turn into a pumpkin but before that I have some time specific work to finish. Rizzo, you aren’t worth answering: I’ve finished my private messaging so I’m off…Sarah

39

Perhaps Dr Wheldon could come and answer the questions? That would be fairer on Sarah, who isn’t an academic. I’m not one either, but I have a very strong interest in all aspects to do with MS and treatments - even CCSVI. Well, not so much the CCSVI…been excited about that, hoped it would work for others, disappointed when their symptoms return. It’s not for me.

To be honest, I’m well and stable and fortunately still in the RRMS stage after 12 years since diagnosis. That’s luck and maybe the DMD. The diet keeps me sane - I can’t digest grains and pulses and feel very ill if I try. If I do try, I suffer dreadful neuropathic pain and can’t walk.
If I was to start progressing, the first thing I’d do is to try to get on a trial and get back on LDN as well as whatever I’m allowed to take. I hate relapses. I may well consult my GP or neuro. He’d be open-minded if I ran out of options. Right now though, I’m okay.

40

The whole debate is still just that, a debate. To claim that the antibiotic protocol is a viable treatment is premature at the very least. Until the data is in we should really be patient and see what the studies say. At present they are still very contradictory with some studies indicating some possible involvement of Chlamydia pneumoniae and others saying quite the opposite, “This argues against a specific role for C. pneumoniae in multiple sclerosis.”

Again, I repeat, until there is more evidence I will remain sceptical.

For those who are interested in this debate, don’t just read David Wheldon’s web site but got to GoogleScholar and enter “chlamydia pneumoniae multiple sclerosis” and start doing some independent reading. Get informed and make up your own minds. There is too much misinformation available nowadays via the internet and it really is important that each and every one of us learns to become healthily sceptical and scientifically objective about some of the “marvellous” treatments and “cures” we hear about.

Don’t take leaps of blind faith, educate yourselves… it is YOUR health at stake.

Belinda