Trepidation, antibiotics and - progress(?)

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

Trepidation, antibiotics and - progress(?)

Postby Northcircular » Tue Apr 17, 2012 3:19 am

Trepidation. That's what I feel at the moment. My wife (L) just started ABX's last night, on the kind advice of Dr Wheldon and we don't know what's in store. So many questions - mainly rhetorical - why didn't I find this treatment earlier? Will it work? Where are the stories from people who didn't benefit from this treatment, just for the sake of balance? Did I source the best supplements? Have I organised timings and doses correctly throughout the day? Why are neurologists prepared to let people die rather than suggest 'fringe' treaments?

Things can get so bad for the gorgeous L that I'm a bit worried about coping if she gets bad reactions. I know I can feed and water her if she gets 'out of it' and I can crush pills to go through her PEG tube - the only problem is the probiotics. I can't crush these as mine are 'gooey'.
Does anyone out there know of any effective liquid (or capsule) forms of probiotics? I'm assuming that the little bottles in the supermarket don't cut the mustard.

I intend to keep updating L's progress in these columns, for better or worse.

Fingers crossed...
Last edited by Northcircular on Fri Apr 20, 2012 2:04 am, edited 1 time in total.
Wife (spms) pre abx;
Balance probs 8 Slurred speech 5 Tremors 5 Swallowing probs 5 Walking probs 8 'cogfog' 3-8 Fatigue 6
Currently only on 200mg Doxy and a bucketful of supplements.
LDN 3mg 3 years, PEG tube 2 years.
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Re: Trepidation - and antibiotics

Postby DougL » Tue Apr 17, 2012 4:02 am

best of luck.
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Re: Trepidation - and antibiotics

Postby tzootsi » Tue Apr 17, 2012 6:17 am

Hope this helps your wife, keep us posted. From what I can gather, ABX seems to help some. There are other treatments that also help some, like Neiper's calcium EAP (see Brewer Science Library), CCSVI, diet, upper cervical chiropractic, stem cells, etc.
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Re: Trepidation - and antibiotics

Postby Loriyas » Tue Apr 17, 2012 10:12 am

Go to the site www.CPn Help.org for more in-depth help and education on the subject of antibiotics.
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Re: Trepidation - and antibiotics

Postby Northcircular » Wed Apr 18, 2012 12:40 am

Thanks everyone, for your support and advice.
Wife (spms) pre abx;
Balance probs 8 Slurred speech 5 Tremors 5 Swallowing probs 5 Walking probs 8 'cogfog' 3-8 Fatigue 6
Currently only on 200mg Doxy and a bucketful of supplements.
LDN 3mg 3 years, PEG tube 2 years.
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Northcircular
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Re: Trepidation - and antibiotics

Postby SarahLonglands » Wed Apr 18, 2012 9:25 am

Hello Northcircular, if you have seen Jen's post on CPn Help, I have just looked up water kefir grains and you can get them through Amazon reasonably quickly. I guess you will have to use just live yoghurt to start with. By "those little bottles in the supermarket" I presume you mean DANONE and that German sounding name which makes a delicious raspberry probiotic drink. They aren't rubbish but kefir and unadulterated lie yoghurt are probably better.

As for supplements, the best are obtainable from either Iherb or Vitacost in the US. The best way to do it is to do a big order to start off and be willing to pay import duty, which is just the same as paying VAT for stuff bought locally. Then, if you are wiling to wait a few weeks, buy things from the to be sent surface mail and keep the cot below £50, then you won't have to pay duty.

You say "Why are neurologists prepared to let people die rather than suggest 'fringe' treatments?" I wonder that myself: my neurologist worked just across the courtyard from David, but did he ever send people to him? Did he ever! Plus he charged me a lot of money for telling me that there was nothing that could be done and that my professional life was over. So now, every year he gets a Christmas card with one of my latest pictures on the front.

As for people who have not been helped by this treatment, there are some and by and large they just stop posting, just like some people who have got completely better or the people very early in their disease who were helped by campath or the people who have gained some sort of vague or temporary relief from ccsvi treatment.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Trepidation - and antibiotics

Postby Northcircular » Wed Apr 18, 2012 11:02 am

Wow, Sarah! You're as big a gem as your husband! Thanks for all this information.

WRT the supplements - I have enough for about three months of most stuff, so I can put an order in soon with one of the companies for surface mail. Great tip.
I had assumed that generally available yoghurts (including those in 'little bottles') wouldn't be able to cope with stomach acids. At the moment, L can swallow OK but there are times when this is not the case and I need to be prepared, so it's good to know the yoghurts etc will suffice.

I love your paintings and what a fabulously subtle way to make a point - but are you sure your neuro is worth it? I actually think ours would be too thick-skinned to recognise the irony...
All our medical profesionals seem to think that people like us act out of 'desperation' - clinging to anything that looks vaguely hopeful. They don't let such frivolities get in the way of the status quo. I think that simply shows how 'out of touch' with their patients they can be.
Anyway, this is probably not the platform...

No major reactions from L yet - apart perhaps from being unusually sleepy this afternoon - oops, and now!
Thanks.
Wife (spms) pre abx;
Balance probs 8 Slurred speech 5 Tremors 5 Swallowing probs 5 Walking probs 8 'cogfog' 3-8 Fatigue 6
Currently only on 200mg Doxy and a bucketful of supplements.
LDN 3mg 3 years, PEG tube 2 years.
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Re: Trepidation, antibiotics and - progress(?)

Postby Northcircular » Fri Apr 20, 2012 2:13 am

Day four of treatment for L. First dose of NAC yesterday.

This morning, the sun is shining, swallows have returned to our cottage - L is brighter than usual and has described very unusual mild aches in her forearms and tingling in her palms and fingers. She says it feels like grit between her hands. These were probably the most recent areas to be affected by her MS.

All these things are just coincidences. Aren't they.
Wife (spms) pre abx;
Balance probs 8 Slurred speech 5 Tremors 5 Swallowing probs 5 Walking probs 8 'cogfog' 3-8 Fatigue 6
Currently only on 200mg Doxy and a bucketful of supplements.
LDN 3mg 3 years, PEG tube 2 years.
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Northcircular
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Joined: Tue Apr 17, 2012 1:40 am

Re: Trepidation, antibiotics and - progress(?)

Postby SarahLonglands » Fri Apr 20, 2012 6:19 am

Well, sun was shining for a while this morning, our swifts have not yet returned to our townhouse but I did see our bats come out of hibernation last week.

With me, the latest MS events were the first to clear themselves. However, these might be just coincidences but time will tell.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Re: Trepidation, antibiotics and - progress(?)

Postby Northcircular » Sun Apr 29, 2012 7:59 am

Our progress with CAP will be continued at;
http://www.CPn Help.org/spms_cap_just_started_and
Wife (spms) pre abx;
Balance probs 8 Slurred speech 5 Tremors 5 Swallowing probs 5 Walking probs 8 'cogfog' 3-8 Fatigue 6
Currently only on 200mg Doxy and a bucketful of supplements.
LDN 3mg 3 years, PEG tube 2 years.
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Northcircular
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Posts: 5
Joined: Tue Apr 17, 2012 1:40 am


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