Gibbledygook's antibiotic log

Tell us what you are using to treat your MS-- and how you are doing.

Postby SarahLonglands » Tue May 22, 2007 7:22 am

Gracious, Alex, 8O I think its time to give yourself a little break from metronidazole. Marie is trying to do it continuously but opted for three weeks on, one week off in the end. I would get the fog, the tingling and moveable headaches after just five days!

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 gibbledygook » Wed May 23, 2007 5:34 am

I must say I am shattered from this 16 day pulse. I feel pretty nauseous too. I think I might take this weekend off. It's just too much. Feel like the flagyl is reaching parts not reached before.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Soldiering on

Postby gibbledygook » Tue May 29, 2007 1:14 am

...however I am soldiering on. This is mainly because I am fed up with not seeing any improvement in the motor function on my right side. Continuous treatment is my last resort. I am hoping to get pregnant next year so I only have these next 11 months to keep taking the antibiotic protocol of whose efficacity I remain to be entirely convinced. What would convince me is if I regain the ability to walk without excessive limping for at least 2km non-stop. I have ranged these last 2 years since starting the protocol from 5m to 1.5km but probably averaged around 700m. I think that improvement could only be possible by continuous metronidazole, however unpleasant this may be. It's a bit of a gamble but then the whole protocol has been a gamble and so far I'm basically evens with a few extra low value chips (no l'hermittes since May 05 and much less painful paresthesia). On the whole however it's been a low-yielding strategy even though gains are very rare across the board and many simply struggle to stay in the game at all. The house usually always wins. I certainly lost a large number of chips early on in the game so that it is quite unusual for me to be still playing and I may have the protocol to thank for this. The trick with most trading strategies is sticking to the rules and I have most certainly stuck to the rules but the gains have been meagre so far so it is now time to leverage up. Double or quits.
Last edited by gibbledygook on Tue May 29, 2007 2:07 am, edited 1 time in total.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SarahLonglands » Tue May 29, 2007 1:59 am

Alex, do bear in mind that the improvement you are hoping for on you right side is probably going to involve finding new pathways or remyelination, something that once you have got rid of the infection, which you probably have by and large, carries on by itself. It might take a very long time, especially if the initial damage was in your spinal chord rather than your brain.

Guner is a good example of the first: he stopped progression and is still feeling things happening in his spinal chord, yet despite improved strength is still in a wheelchair. I am an example of the second: vast damage in my head but only just creeping down into my spine. I was able to give up full-time treatment after a year but still am finding slow improvements even between pulses and have not had a bad MS event since starting treatment. I still can't walk miles and miles, but I can walk, sometimes without a limp, but best of all, I have regained full use of my painting arm and my clear head.

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 gibbledygook » Tue May 29, 2007 2:18 am

Yes, it is correct that I had or have a large lesion on my spinal cord and that is always bad news for chances of recovery. The odds are very much stacked against me. Yet if I double up now then I may be able to exit in 11 months with something better to show for the time/cost investments than the existing pulsed strategy. It's very boring not being able to drink in this casino! :x
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby gibbledygook » Tue May 29, 2007 4:04 am

One final comment I have with the antibiotic protocol is that it is hard for those of us without significant rewards really to praise the strategy. Yet if this is THE strategy for beating the house then it is encumbent on old hands to refine the tactics. Time, as you mentioned, and continuous metronidazole are the last 2 tactics which I have. If one of these works and I beat the house, then I will most certainly be encouraging more to join the game. Many of those in the casino do not have time and mine is looking increasingly limited. I must first try continuous metronidazole.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby SarahLonglands » Tue May 29, 2007 5:16 am

You've lost me there, I'm afraid, must be the casino speak: time is what I didn't have, but my one year full-time regime seems to have worked, because I not only stopped progression but regained a lot of what I had lost. I still am grasping back little bits as time goes on. I would love to still be able to do thirty mile treks or do cross country runs, but I doubt is I ever will, even though I am fit enough. My feet just refuse to cooperate and sometimes I just sit down and cry: I am at the moment, typing this when I have so many other things I should be doing and eating my lunch at the same time.

I never feel anything happening when doing a flagyl pulse apart from feeling depressed and tired and I never have improvements afterwards which can be attributed to a pulse, yet I can go for three months without taking any antibiotics and suddenly realise I am doing something I found difficult a short time before. I doubt if things would have been different any other way.

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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Continuous metronidazole

Postby gibbledygook » Tue Jun 19, 2007 7:54 am

I've been on 1200mg metronidazole daily for 43 days now. I recently also added 400mg plaquenil to the antibiotic mix as plaquenil is meant to be effective against lyme disease which I may also have. Anyway the antibiotics have so far not helped at all even though I've been taking them for 2.5 years so I may as well try some other drugs! I've also started smoking the weed again which helps with the appetite but makes my MS pain and walking much worse! Ha, nothing helps this disease. :twisted:
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby viper498 » Tue Jun 19, 2007 8:15 am

Sarah, and the other CPN'ers... How do you explain why Gibbledygook is having so many problems with no benefit from ABX, or any other drug?

Gibbledygook,

Have you been taking a consistent daily dose of ABX, if so what? and what dosing? Just curious. I am sure it is one of the 25 pages of your journal, but I am hoping you can just tell me.

Brock
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Postby SarahLonglands » Tue Jun 19, 2007 8:17 am

Alex, really! You reported your neurologist saying this last year and it is earlier in in this very blog:

Here is the radiologist's report which I got back from my neurologist today.

"MRI HEAD: SAG T1 FAST SPGR, AX T2 FAST SPIN ECHO, COR FAST FLAIR, COR T1 SPIN ECHO, MAGNEVIST, COR T1 SPIN ECHO, AX T1 FAST SPGR

Comparison is made with the previous MRI of 09/March/2004.

As before there are multiple T2 hyperintense lesions in the periventricular and juxta cortical white matter.

There has been no change in lesion load and there are no enhancing lesions.

MRI CERVICAL SPINE: SAG T1 FSE, SAG T2 FSE, AX T1 FAST SPIN ECHO

The T2 hyperintense lesion in the cervical spine is no better defined and smaller extending from C3 to C4 levels.

There is also a reduction in cord diameter at this level compared to the previous study. The residual T2 hyper/T1 hypointense area involves predominantly the posterior columns and does not enhance.

The lesion in the upper thoracic spine is also less extensive.

COMMENT
The appearances are consistent with chronic and not with acute demyelinating lesions."

I wasn't too happy about the "reduction in cord diameter" but my neurologist said that the cord from 04 was swollen. He also said that I should carry on with the antibiotics and "whatever else it is that I am doing" since the 04 MRI scan showed a very active disease state whereas I have now clearly and demonstrably stabilized. I suggested that this was because of the 3 days of prednisone I had in December 04 but he dismissed these as being of only temporary effectiveness. He seemed extremely pleased for me.


I think you are suffering from a metronidazole overload, and by the way, you don't need plaquenil because what you are already taking is effective against lyme disease.

Sarah
Last edited by SarahLonglands on Tue Jun 19, 2007 9:21 am, edited 1 time in total.
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 gibbledygook » Tue Jun 19, 2007 8:24 am

I have been taking all the antibiotics with great care and commitment: so doxicycline 200mg daily, roxithromycin 300mg daily and metronidazole in pulses and now continuously. Although the scan shows no new lesions and some lesions have become less extensive there has been no improvement in my experience of any of the symptoms. So I'm branching out into other avenues of medication. I'm on a 10 month timetable to find a new wonder drug! Hah. Fat chance.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby MacKintosh » Tue Jun 19, 2007 8:38 am

I, too, would like to know the abx protocol we're talking about here... continuous flagyl isn't the norm.
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 tory2457 » Tue Jun 19, 2007 9:26 am

Hi there gibbledygook:

Your frustration is well documented....and not without cause! Unfortunately there is so much we still don't know about all these pathogen's.

I do have lyme and cpn and researchers state that the parasites that go along with the pathogen's are itself a problem...Mycoplasma, Ehrlicia, Babesia, Bartonella, etc, etc.

I hope you continue with the abx protocol; we do get better ( but not overnight.) You don't have any more lesions -- I raise my hand for victory..small as it may seem.

Dr Eva Sapi a researcher speaks about co-infections that NEED research...parasites that need to be addressed!
http://www.ctn.state.ct.us/ondemand.asp?ID=2441
(around the 18 min mark)

While in treatment: did you detox regularly?

tory
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Postby SarahLonglands » Tue Jun 19, 2007 9:36 am

Sorry, Brock, I didn't notice you there, but I guess my post might have answered you.

Mac, continous flagyl is sometimes used at Vanderbilt, but I wouldn't fancy it myself. Plaquenil is not needed as an added extra.

Everyone, David did this blog about "Forgettory" -
http://www.CPn Help.org/a_good_forgettory I can suffer from it myself, but I have my physician on hand to remind me of what I was like four years ago. I suffer from it especially whilst doing a pulse of now tinidazole but formerly metronidazole.

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 gibbledygook » Tue Jun 19, 2007 9:39 am

I'm afraid I don't do any detoxing of the charcoal variety. I do take vitamins sporadically but have lost the zeal of the early years. I also long ago gave up on gluten/fat/free diets as effective agents of change as these made me lose weight and I continued to deteriorate.

Unfortunately I haven't forgotten anything as this very log reveals that I have not changed since starting the antibiotics.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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