Question from the Netherlands

A forum for the discussion of antibiotics as a potential therapy for MS

Question from the Netherlands

Postby snackhand » Sun Feb 27, 2005 4:18 pm

Hello,

This is the first time i am writing on this forum.
I'm a dutch woman,46 years old and MS since 1997(RRMS)
Last year i read for the first time about treatment with antibiotics.
It immediatly had my interest,because i keep getting the evidence for myself that my MS is caused by an organism like C Pn.

I told my neurlogist about the theory,he was interested,read about it,asked several bacteriologists about it,but finally he wold not treat me with antibiotics.

I don't know how to go on now,maybe someone has a good advice for me.

Sorry for the bad English,i hope you know what i want to say.
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Re: Question from the Netherlands

Postby Daunted » Sun Feb 27, 2005 5:26 pm

What evidence do you have that your MS is linked with CPn?

I'm curious.

Also perhaps you might consider coming to the UK and seeing Dr. Wheldon? I went almost 3,000 miles to see my doc! Just a thought.
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Postby SarahLonglands » Mon Feb 28, 2005 3:54 am

Hello Snackhand,

You speak very good English as do most people from Nederland, in my experience.

It might be a very good idea to come over to see Dr. Wheldon, my husband, who initially started me on antibiotics in August 2003. Having developed a very rapidly progressive form of the disease, I started to improve immediately and have had no bad events since. You presumably have seen this:

http://www.davidwheldon.co.uk/ms_treatment.html

At the bottom of the first page you will find his hospital email address. We are in Bedford, which is fairly easy to get to either from Harwich harbour or Luton airport. Or any of the London airports come to that.

Rogier Hintzen, a neurologist at Erasmus MC has done some work with CPn infection, but I don't know whether he treats people on a general basis.

Have you shown all the information to your own General Practitioner? He/she might be willing to prescribe without going through a neurologist. Mine does, whereas my neurologist just discarded me. Well, she probably felt she couldn't refuse, my husband being at the time the sole consultant microbiologist at Bedford, but many other GPs will prescribe after the patient initially seeing David, or even some after correspondence with him. He doesn't charge for a private consultation: he does it simply because he is so glad he got me better.

Take care,

Sarah
Last edited by SarahLonglands on Fri Jan 05, 2007 10:31 am, edited 1 time in total.
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Postby snackhand » Mon Feb 28, 2005 1:22 pm

Hello Daunted and Sarah,

First of all:Thank you for answering.

About the evidence I've mentioned;
My ms started months after an infection of the trachea airways(I hope this is good English)
In the beginning I had two small relapses within two years.

For about seven years nothing really happened, untill last december I had the same airway-infection, and two months later a bigger relapse, I was almost paralysed on the right side of the body and steerless at the same time, I am still recovering.

Last year I heard about C pn. and that this organism is suspected to
cause several chronic diseases.

I printed everything I found about it on the internet and handed it to my neurologist.
He didn't decline the theorie,but the problem is that Rogier Hintzen, his colleague, dissuaded from treatment,based on his own investigation,he had no evidence that C pn. causes a relapse in ms.

Nevertheless the treatment still has my attention,especcially after my last relapse, I don't want to wait untill the ms grows worse and do nothing in the meantime.

Besides that I have my doubts about the farmaceutical industrie,they do a lot of good things,but above all they go for the profits.

Interferon,gamma-globulin,tysabri and many more are for the first time in ms-history valueble,but above all expensive.

On april 10 I have the next appointment at my neurologist,I will ask him one more time about the antibiotics,also I will ask my GP about everything and eventually,if necessary,i will use the option to come to England.

I shall leave it at this for now,the questions I still have,are for another time.

Thank you again for your answers,and I wish you a good health,

Regards,Annemarie.

Thank you so far,
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Postby snackhand » Mon Feb 28, 2005 1:32 pm

I forgot to mention that a bloodtest showed that C pn (acute and chronic) is in my system.

I do not know how reliable a bloodtest is.

Annemarie.
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Postby Daunted » Mon Feb 28, 2005 4:27 pm

Quite interesting that the Hintzen paper is used by Dr. Wheldon and others to support the idea of anti-chlamydial therapy, yet the good doctor himself won't prescribe it?

Of course, neither will the guys at Vanderbilt in routine practice, so perhaps that's the issue.
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Postby SarahLonglands » Tue Mar 01, 2005 5:44 am

Yes, its very strange and infuriating. I can only put it down to pressures from people who do the funding who don't want trials compromised by anecdotal evidence.

Here is a link to the Hintzen abstract in case you haven't seen it: I have a better link somewhere but am too busy at the moment to look.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14681894&dopt=Abstract

Sarah

edit: um, sorry, the link I was thinking of is actually a hard copy of the paper sent from source, so I can't really copy and post it!
Last edited by SarahLonglands on Wed Mar 02, 2005 6:18 am, edited 1 time in total.
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Postby snackhand » Tue Mar 01, 2005 3:40 pm

Yes ,indeed,strange.......but there must be a reason and the one you mention,Sarah,could be an explication.

I'll try to find out more about it,I'll let you if I get any answers on this.

Greetings,Annemarie.
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Postby SarahLonglands » Wed Mar 02, 2005 6:51 am

Hello AnneMarie,

Basically, many people don't like scientific change: it seems that no matter how much evidence is produced about something, if something less well researched is put out upholding the status quo, they will prefer to believe that.

You know about your two airways infections and what happened afterwards, I know about mine, but trying to convince someone is a completely different matter. I was deterorating so rapidly less than two years ago that I would probably be unable to do very much myself now at all if it wasn't for David who just went on ahead and treated me. The good news is, my neurologist listened intently to him over lunch in the Medical Institute yesterday (!!) and admitted that my recovery was totally unexpected. He also now knows that he is treating several other people who are mostly all making headway. Its a start! :?

Sarah
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Postby Daunted » Wed Mar 02, 2005 9:29 am

I am very curious as to the resistance of physicians to prescribe this treatment. Sarah I don't know that it has anything to do with funding sources in Europe as I don't know if there are any trials going on in Europe! (are there any planned?) I do suspect that is a consideration at Vanderbilt.

I have had sinusitis for years (my mom often jokes and says they sent me home from the hospital with Actifed, a cold medicine)..and since beginning the treatment I have had a couple things flare up that could plausibly be CPn-related....but I will post more in a few months when I have more data.

But I guess I find the sheer refusal to engage with the idea annoying, especially when AnneMarie here has positive bloodwork!

Good news that your neurologist actually took the time to listen to the specifics of your story. I'll be curious to see how that all plays out.
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Postby SarahLonglands » Thu Mar 03, 2005 3:50 am

Hmm, so will I: Yesterday the neuro actually came and sat with David, as opposed to the day before when David took him by surprise. He is forwarding him some papers, so we will wait and see.

There are certainly no appropriate trials planned in the UK at the moment. I'm not sure about the rest of Europe, because countries still work very independently despite most of them now being in the EU. I'll try to find out when I have the time.

I'm lucky not to have the time at the moment, because if things had panned out as per my neuro's expectations, I would have all the time in the world, not that I would have been able to do much with it.

Sarah
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Postby snackhand » Sat Mar 05, 2005 7:50 am

Hi Sarah and Daunted,

That might be a step forward again,the interest of your neurologist,Sarah.

That is my greatest fear also;that the MS is getting so bad,it makes it unable for me to do much with all the time i have.

At this time i can still walk,talk and think clear,so now is the time,my last relapse gave me a weak right arm and leg, so i know i must noit wait for too long.

Is it allright with you that i print our conversation here and take it with me to the clinic in Holland?

Regards,Annemarie.
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Postby SarahLonglands » Sat Mar 05, 2005 8:43 am

Yes, of course, take anything you like!

Sarah
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Postby snackhand » Tue Mar 15, 2005 2:36 pm

Hi all,

Today I went to see my GP today.I have a gastritis after the prednisolon last month. So again medication....... :cry:

I also asked him about the treatment with antibiotics and gave him several prints from this forum and more.
He promised me to read it all,but preferes to leave any kind of treatment to the specialist.

I will see my neurologist on april 7 and ask him everything about the treatment and his ideas about the whole matter.

Maybe someone can answer me on some of the following questions:

What can be the consequenses of long-term treatment with antibiotics?
I am very curious about side effects and negative experiences one might have from a long-term treatment with antibiotics.
For example: wat does it do with your body,what if you get an infection in the future,won't you have become resistant?
What does it do to your intestine? Can you eat normally during (and after) treatment?

Annemarie.
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Postby SarahLonglands » Tue Mar 15, 2005 3:42 pm

Hello Annemarie,

Here are some replies to your questions:

Long term treatment with these antibiotics essentially causes no problems, since they are carefully chosen to avoid any problems with resistance. Doxycycline can be taken long term without difficulty and often is for, say acne, and can then be used eventually intermittently with no problems whatsoever. Many people use this as a prophylactic against malaria.

Consequently if you need to take doxycycline for any reason in the future, no worry. The regime also does not affect any other antibiotic you might need to take at any time in the future. While you are taking them, there are many illnesses that you should not be bothered with in any case.

You can certainly both eat and drink normally during the treatment. The only thing you should be careful about is drinking during the five days you are on metronidizole. Also, it is advisable to take probiotics, such as acidophilus during the course, at least two hours separate from any of the antibiotics. This should avoid any intestinal problems.

Bear in mind that the person who started me on this treatment, my husband David, is a consultant microbiologist, and so knows exactly what one can and can't do with the various antibiotics and would not want to cause problems either to me or to anyone else in the future. A fellow microbiologist at the time said, 'but aren't you worried about thrush?' - an easily treatable condition compared to MS, for goodness sake, and one that has not bothered me at all, whether due to the acidophilus or the general rebalancing of the system, I don't know.

The trouble is that a neurologist is not a specialist in antibiotics and most don't like to stray outside the accepted treatment options. Some GPs, who maybe know a little more about antibiotics, will give the go ahead for treatment, others won't. A possibility is that you ask your GP to write to my husband, as many GPs do in this country. His email can be found at the bottom of this page:

http://www.davidwheldon.co.uk/ms_treatment.html

My neurologist would not have considered any of this treatment, but luckily I was married to the right specialist. He does now seem to be mellowing somewhat, in that he has admitted to David that my recovery was beyond all expectations.

It might be worth asking your neurologist also to get in touch with David, because there are now at least a couple in the London area who, although they leave the prescribing to David, do at least say that they can see no harm!

Take care,

Sarah :)

A few little edits due to the lateness of the hour when I wrote this originally.
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