This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi there all

After doing as much research as I could I decided that the arguments for trying an antibiotic regime were persuasive enough for me to try.

Consequently I met Dr Wheldon (Incidentally he's a very nice chap!). Armed with a prescription I started 200 mg / day doxycycline on Saturday (02/10). I haven't started the roxy yet as that had to be ordered.

I can't report any results yet as it's too early to tell, however I will post regular bulletins on progress.

I will try and make those reports as honest as possible, reporting both good or bad without editorialisation.

A little personal info on my MS:

Diagnosed for 5 years with RRMS, recently upgraded(sic) to progressive.
Still able to walk unaided for approx 100 yds before needing support / rest
Severe spasticity / Ataxia
The usual bladder problems
Burning / tingling sensation, both legs from upper thigh downwards.

Those are my major symptoms, any changes either way and I'll report them.

Robin

Robin,

Just what all of us want to hear.......regular updates of an unbiased nature, from someone new to the antibiotic treatment-front.

We're all holding our breath.

Good Luck!

Treez

Robin, your posts will be VERY important to many in our community. Thank you for sharing, and please keep us updated as often as you feel comfortable.

Hi raven

You know me from a different place, I am the very sweetly named flower. I am here and ready to listen to anything you can tell me about your journey using antibiotics. I hope you'll agree that I am an aptly named bird. I want to pick up any of those sparkling jewels of information that you may have to offer.

magpie

I started this thread with the intention of reporting my experiences on the antibiotic treatment without interpretation or editorialisation. I didn't realise at the time how hard that would actually be. For example, if you have a headache, take an aspirin, headache goes. That's easy. If after an hour you were asked is your headache 5% better or worse? It becomes a much more difficult thing to assess. Without meaning to, it's easy to add your own personal bias into the judgement. I'm still going to report as honestly as I can but felt that the caveat was worth mentioning.

I've been on the doxycycline for 6 days now. I still have not started the roxythromycin. So far these are the results:

As reported by others I do have a feeling of lightheadedness, this is more apparent when showering. It isn't severe, and is easily ignored. I've also noticed a tightness around the chest. Again this is amplified whilst showering but is also minor and easily ignored.

I do feel a slight worsening of my MS symptoms, particularly legs feeling like lead. I can't say that this is a Herxheimer response. It may be a placebo style effect. When I started the treatment I expected my symptoms to worsen for a while, therefore it's entirely possible that this is happening because I expect it to.

To conclude my first report all I can say is something appears to be happening. Whether that something is good or bad? It's too early to say.

Robin

p.s. Hello magpie, I haven't forgotten the document I promised to send you....

A quick update on my treatment regime.

The initial lightheadedness and mild tightness around the chest have disappeared. There have been no other adverse reactions.

I saw my phsyiotherapist last Monday, apparently I have improved noticeably since the last time I saw her. I don't feel that my walking and gait have improved dramatically, but she said the difference was definitely there. In fact I see her once more this monday and then I'm being discharged.

I also saw the MS nurse on Wednesday, self catheterization being top of the list. The last 3 bladder scans that I've had showed a urinary retention of 200 - 250ml. On Wednesday the scan was 80ml. We decided that catheterization was not necessary at this time. Wahoo!

Also my mental clarity seems much improved, I'm much more able to concentrate and get things done.

I'm not gonna start shouting I'm on the way to a cure or anything even close to that. There could be many other reasons why I appear to be improving. I have another appointment with the MS nurse in November. If the bladder scan is still around 80ml or better then I'll be far more confident in the treatment.

Right now though I'm certainly not complaining.

Robin

2 Months in....

I am now able to say that I am improving. My walking ability has increased and urinary problems are reduced. These improvements are not dramatic but I have been monitoring myself closely and they are definitely there.

The big question is, can I say with confidence that these improvements are entirely due to the antibiotic treatment, the answer is no. Starting the treatment regimen has also been accompanied by other medication and lifestyle changes. I have started to take Gabapentin (Neurontin) for neuropathic pain. Gabapentin also has a calming effect upon spasticity and could be partly responsible for my improved walking. In addition I have also started an exercise program overseen by a personal trainer. This could well be having a beneficial effect on my MS. Finally the changes could just be the natural ebb and flow of this tricky little condition.

That said, I am not going to change or stop my regimen. For whatever reason I appear to be doing something right. 'If it aint broke don't fix it'.

I'll give another update in around another 2 months.

Robin

Thanks, Robin, for the update. I was only thinking yesterday evening that I didn't post anything anywhere until six months of treatment and a second improving MRI. Things don't happen all at once, after all and I was still in agony from my right arm until then, so typing with one hand - and painting with my left hand a lot of the time. I might have become totally ambidextrous if I'd had to keep that up!

Take care,

Sarah

Hi Robin
I started my antibiotics this morning- my G.P. was lovely and she prescribed the Doxycycline and Metronidizole on the NHS so I have only had to pay for the Roxythromicine which arrived in 3 days!

The pharmacist at my local Boots didn't bat an eyelid when I gave her David Wheldon's private prescription as she had had exactly the same one a few days earlier!!!!! she said she could put me in touch with the lady in question-but maybe I'll hold back on that one(privacy etc.)

I am a mix of being desperate to feel awful as it means that something is happening and dreading a worsening of my symtoms but WE HAVE NOTHING TO LOSE.

Thank you so much for posting your experiences-I don't feel quite so alone in all this and I trust David Wheldon much more than my neurologist who is apparently one of the best in the country at a top London hospital. I see him once a year to be told I'm not getting any better. Lovely.

Anyway I'll keep reporting anything ,good or bad.

Keep well,and take care

Debbie x

Hi Debbie,

Thank you so much for sharing and best wishes for success with the therapy.

I think it would be very helpful to the community if you also started a new thread tracking your specific own experiences... You may want to update it often early on, then more sporadically as your body adjusts. Just a suggestion, and in any case, thank you again for sharing.

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

Hi Debbie




I wouldn't worry too much about a Herxheimer response. I didn't have any bad reactions to speak of. It does not mean that the treatment is not working because you don't have a reaction. However, if you do start to feel unwell (particularly breathing difficulties) please discuss it with either David or your GP. It would be easy to assume that an adverse reaction to the antibiotics is a Herxheimer response and ignore a possibly harmful situation.

Other than that, I hope that the treatment goes well for you and you gain benefit from it.

My very best wishes

Robin

Another update, this time not so good.

Starting boxing day I was struck down with the flu. Whilst I recovered from that fairly quickly it has kicked me into a major relapse. I'm currently relying on crutches to walk even the shortest distances.

I saw my consultant on Friday who has offered to try and get me onto the Campath trials.

So I'm faced with the decision. Do I continue with the antibiotic regimen in spite of the relapse or do I accept that it hasn't worked for me and go for Campath?

I will probably continue with Minocycline for its neuroprotective properties regardless of any other treatment decisions.

Robin

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Do not go gentle into that good night. Rage, rage against the dying of the light.

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Robin, What dreadfully bad news! I showed the posting to David who will be having a good think about it and write to you tomorrow.

Apart from the couple of people who have showed no effect whatsoever, but at the same time no progression, nobody to my knowledge has had a relapse so far on this treatment.

Do you mind me asking, have you taken any metronidizole yet? If the answer is no it could be quite relevant. Working it out from when you started treatment, you would have been just on the verge of starting.

Take care,

Sarah
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Hi Anecdote and Robin,

I have been following the antibiotic theory and quite interested in finding out what David's thoughts are about Robin's relapse during treatment that is if none of the parties mind of course.

All the best for everyone!

.
Hello again Tomi,

As far as Robin's relapse goes, I think you had better wait for him to reply, however, speaking in general terms, people in the very early stages of treatment may still possibly suffer a relapse, especially after 'flu or a very stressful period. Just before and then after Christmas this year I myself succumbed to both a very bad cold and winter vomiting virus, but suffered no ill effects. I had been on the treatment for nearly 18 months, though and am now on only intermittent treatment for two weeks every two or three months. In that time I have had no relapses at all and there are no new lesions or in fact any active ones at all.

Sarah