My lazy update for anyone whos interested

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

Postby Anecdote » Wed Oct 12, 2005 12:40 pm

Right, let's be all OT together! 8O But not just yet, dinner is beckoning. I wasn't offended :wink:

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: reply from someone who is certainly interested!

Postby CureOrBust » Mon Oct 17, 2005 6:21 am

Anecdote wrote:Damn right you'll wait three weeks!

Ok, I have decided to start my next flagyl pulse 3 days early. Whats 3 days between friends?

Actually, the real reason is because If I do suffer some reaction to it, i would prefer that it occurs on a weekend, instead of while i am at work. Honest, its not my impatience... well maybe a little :roll:
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Postby CureOrBust » Sun Oct 30, 2005 4:52 am

ok, i updated the My Regimes section, but not here.

I did a 6 day long pulse of flagyl last week.

I didnt appear to suffer any reaction to the pulse, the only reason i stopped was because the treatment recommendation is for 5 day pulses, so i didnt want to push it too much. However, on my next pulse, i am planning to go much longer.

I have noticed that on saturday (roughly 5 days after the pulse end) My balance was a little less sure.

Also, as a side note, i remember reading that some people find the doxi leaves a bad taste in their mouth. On my last script refil, i got some doxi tablets that appear to be coated. With these, i cant taste anything of them. I guess if it boithers you, maybe there is a brand in your country that also coats the tablets.
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Postby Anecdote » Sun Oct 30, 2005 5:27 am

Yes, I have wondered about this, because mine, under the brand name of "Vibramycin" are capsules which don't taste at all! I didn't realise that there were some which were just uncoated tablets. Knowing what they are made of, I'm not surprised they taste funny. Now, metranidizole does taste metallic, tinidizole less so.

Take a longer pulse if you feel up to it, but don't overdo it, despite your impatience. You might well end up feeling very depressed if nothing else! :x

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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Postby CureOrBust » Sun Oct 30, 2005 11:59 pm

Anecdote wrote:Take a longer pulse if you feel up to it, but don't overdo it, despite your impatience. You might well end up feeling very depressed if nothing else!


I have read people feel depressed after flagyl, but i cant say for certain that after 6 days I felt any worse for wear emotionally. I guess I am very lucky in that respect. Maybe a longer pulse would be different. It cant be anywhere near as bad as I felt while i was on rebif. That made me VERY depressed, and I suffered tendencies for road rage (all with the windows rolled up of course :twisted: )
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Postby CureOrBust » Tue Nov 08, 2005 4:38 am

I tried to go for a long pulse. However, I just finished my fith day, and I dont think i want to try a sixth. This is getting really hard to ignore...

My walking feels a lot more laboured, and the pins and needles in my feet feel more intense also.

I'll let you know if it all returns to normal, now that I have stopped the flagyl.

Almost forgot, I did feal a little nauseated in the mornings; but it could of been the LDN. Well see.
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Postby Anecdote » Tue Nov 08, 2005 5:35 am

I shall endeavour not to repeat what I did yesterday in the Lyme thread. :oops:

You are very wise not to make the pulse longer. In the early days, David would say to me "Carry on, take it for as long as you can" but I would always duck out, maybe half way through the fifth day, sometimes after the fourth. It will take you a few days before it all returns to normal(?) as well, so don't be perturbed. :wink:

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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Postby CureOrBust » Wed Nov 09, 2005 2:58 am

I have to admit, just the thought of what u did yesterdays brings a smile to my face :)

Anecdote wrote:so don't be perturbed

I am far from perturbed, if this is a reaction to the abx then i am excited. It means my "MS" is cureable. It was very tempting to do the sixth day to see how far the reaction went, but i know there will be a next time, and took what david writes seariously.

I also seem to have a slightly raised body temp. I used to normally average in the low 36.2C-36.5C, but I had one reading yesterday at 37.2, and now I am 36.8. not a fever, but a little above average for me. could be the warmer weather maybe, well see if i return to my "normal".
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Postby CureOrBust » Fri Nov 11, 2005 5:59 am

the pins and needle in my feet have greatly reduced in the last two days. and my balance appears to have returned back to what it was before.

again this was rather quick for me. And before I started all my "whacky" treatments, the only way to comeback (or actually to even stop it) from worsening was to take prednisone (75mg/day).
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Postby MacKintosh » Fri Nov 11, 2005 6:19 am

Cure or Bust -


YAAAAAAAYYYYYYYYYYY!!!!!!
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby EricJohnson » Fri Nov 11, 2005 11:36 am

Just a note for anyone who doesnt have a rapid symptom response to abx consistent with microbe lysis. I never had these responses in a year of going on and off different abx combos for my severe Chronic Fatigue Syndrome. That is, not from any of the drugs which were my recovery workhorses. The one and only drug I ever had a rapid reaction to was fluconazole, which I used for just 20 days at the beginning of treatment.

The drugs I used extensively - doxy, mino, tinidazole, azithromycin, and cefuroxime axetil - all had zero short-term effect, nothing. But they (especially tinidazole) still got me 95% better (for now / so far).

Early in my treatment, I was worried about this, so I searched for several hours trying to find patients who were "herxless" like me, but still improved. There are few indeed, but they exist.
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Postby Jaded » Fri Nov 11, 2005 11:58 am

Hello EricJohnson

Nice to have you on this board - not met before!! :wink:

Please tell us a bit more about yourself - how long have you been on the abx? What type of MS do you have...???


If you already have elsewhere I apologise... :oops:


CureO,

Brilliant news. Fingers crossed it keeps up for you. I know how you feel on the burning foot...! :cry:

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Postby Anecdote » Fri Nov 11, 2005 12:13 pm

Hi Eric,

Early in my treatment, I was worried about this, so I searched for several hours trying to find patients who were "herxless" like me, but still improved. There are few indeed, but they exist.

Well, apart from the third go at metronidizole I was almost as well. Like you, it worried me a bit, until I saw the vast improvements in my follow up MRI.

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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Postby EricJohnson » Fri Nov 11, 2005 2:56 pm

Its nice to meet you Sarah, I think I first read your story almost a year ago.

Hi Jaded, I dont have MS, but slowly developed CFS in 2003-4. CFS has some common symptoms with MS (tho the mechanisms may not necessarily be the same) - fatigue, cognitive problems, allergies/sensitivities like Sarahs... alot more. But not motor problems.

One year of heavy abx down, and I am 95% improved (and still treating). And hoping to become a bacteriologist/pathologist someday... but theres alot of competition for resources in the biomedical field. Im interested in all infectious diseases, and all the idiopathic immune-activation-involving diseases like CFS, the arthritides, MS, Alzheimers, the oculitides, lupus, and others. Im most focused on why abx-based recoveries from the idiopathic diseases (and from a few accepted infectious diseases such as Whipples) are very lengthy and often incomplete, compared to eg treatment of a bladder infection - where the bacteria are certainly different, but the molecular targets are the same.

Damage and autoreactivity certainly might explain some residual symptoms in the idiopathic immune diseases. Yet the slowness of therapeutic response, and the fact that no few patients continue to improve on further abx after years of abx treatment, both support a model in which current treatments often fail to eradicate symptom-causing infections. One day, knowledge of why this (apparantly) occurs might help advance the speed and completeness of therapy. For now, we do the best we can with what we have, which turns out to be pretty sweet indeed for many idiopathic immune disease patients. Abx treatment requires alot of patience tho. It took me 11 months or treatment for me to resume any enjoyment of life at all, and it often didnt seem to be going as well as I now see it was.
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Postby MacKintosh » Fri Nov 11, 2005 4:40 pm

Eric - GREAT to hear of your continuing recovery and very comforting to me, in particular, with near-zero 'herx'-like reaction to abx after six weeks (six weeks today, I think). We'll see what the metronidazole brings day after Thanksgiving.....
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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