Gibbledygook's antibiotic log

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

Postby gibbledygook » Wed Oct 17, 2007 5:22 am

I eventually, some 7 days after the blood was drawn, got my liver function tests back. Thankfully they were all fine so I immediately resumed doxicycline and roxithromycin and then managed 5 days on metronidazole and 400mg of plaquenil daily. I've added the plaquenil to my metronidazole pulse as this may also be effective in killing off spirochetes/chlamydia/mycoplasma. This is slightly clutching at straws since I've done a good, long 2.75 years on the combination of doxicycline, roxithromycin and metronidazole and have seen no sustained improvements and recently have developed new deficits affecting my left leg and right hand. These have improved somewhat but the disease has definitely spread since starting the antibiotics.
I've also started taking a fibrinolytic, lumbrokinase, which is essentially a blood-thinning enzyme. Excessive fibrin is to be found in MS lesions so I thought I might try an experiment with this stuff for a month or so.
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 robbie » Wed Oct 17, 2007 6:48 am

why don't you post this in the antibiotics forum also, after as long as you've done the abx you must really wonder if it's doing anything.
Had ms for over 19 years now.
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Postby SarahLonglands » Wed Oct 17, 2007 7:28 am

Robbie, things are not as they seem, since Alex was told by her neuro, after an MRI last year, to keep on with whatever she was doing because whatever it was, it was working:

http://www.thisisms.com/ftopicp-27957-alex.html+reported+neurologist+saying#27957

Wanting more, she then decided to try continuous metronidazole and to over heat her 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 » Thu Oct 18, 2007 3:21 am

It is correct to say that in February 2007 after 2 years on antibiotics my scans had shown a reduction in lesion size which is encouraging, however this hadn't translated clinically and I had not experienced sustained improvements in any deficits. I therefore tried continuous metronidazole. After only 15 days on this stuff my walking was abysmal. Concurrently with the continuous treatment I used an infrared sauna on my back, especially the lower back area and on my head. After 73 days on metronidazole and approximately 21hours of infrared sauna usage I suffered a relapse where new deficits appeared in my hitherto unaffected left leg and my walking came to a standstill. These brand new deficits have improved and this is quite unlike my natural MS relapse throughout 2004 where all my deficits gradually and insidiously got worse and worse. However these deficits have not gone entirely and so I cannot at present determine whether I have suffered a typical MS relapse or something associated with metronidazole/infrared sauna use. The only clear thing is that I am now worse than I was when I started the antibiotics 2.75 years ago so I'm obviously going to be rooting around for other things which might help. Fibrinolytics seems a good place to start.

I would move my regimen to the antibiotics section but I started the log 2.75 years ago and think it would be best to continue in the same area.
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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Serrapeptase and lumbrokinase

Postby gibbledygook » Fri Oct 26, 2007 3:07 am

I have over the last few days added serrapeptase to my regimen. This is a proteolytic enzyme which Pubmed states in one report "It is concluded that Serratia peptidase has anti-inflammatory, anti-oedemic and fibrinolytic activity and acts rapidly on localized inflammation" <shortened url>.

There's quite a lot of good stuff on this enzyme in PubMed although little to substantiate the claims made by the manufacturer that it is effective in atherosclerosis and at reducing clotting. Nevertheless I think that given that this enzyme is derived from the silk worm's process of dissolving its chrysalis that it may well be effective at healing scarring. Hopefully multiple scarring! The first day I tried the full dose I was also on my 38th pulse which now includes 400mg plaquenil. That night I had dreadful spasms. The following day I took none and had no spasms. The day after I took 2/3 the daily dose but only in the early part of the day and had no spasms. Last night I took 1/3 dose in the evening and had spasms. There seems to be a link. In fact when I have taken this enzyme during this pulse the deficits everywhere feel worse but improve when I take a break. I'm therefore going continually to pulse this enzyme and see if anything good comes of it. I continue to take lumbrokinase as well which has a much milder or not noticeable effect. All my deficits remain much as they have been except one which for the last 2 weeks has virtually disappeared. However whenever I mention an improvement in this deficit on this log it immediately reappears so I won't specify it today but only note a clear improvement in one deficit.
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 » Wed Oct 31, 2007 5:11 am

Hi Alex, just out of interest, your profile mentions that you are a "home chef." Is this your sense of irony or do you organise dinner parties for the culinarily disadvantaged?

I hope you are feeling a bit stronger now, anyway and that the inflammation is dying down. :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 gibbledygook » Wed Oct 31, 2007 9:41 am

Hi Sarah!

Yes, I am home chef! I am responsible for providing my somewhat overweight partner with healthy nutritious meals at 7pm exactly. However as I'm hardly Gordon Ramsay in the kitchen calling myself a chef is a bit ambitious.

I think the inflammation which caused new deficits in the left leg has died down quite a bit and the burning/tingling in the calf and knee area has become quite a bit better but not entirely gone. The twitchiness in my right little finger is being very stubborn and vigorous especially in the morning and in sympathy with walking. Patience patience. I think the enzymes may be helping. I can imagine them breaking down all the scarring in my spine which is a positive image for me and I daresay having a positive vibe will help as much as anything. 8)
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 Nov 06, 2007 6:00 am

I continue to experience tingling and pain in the new deficits in my left leg. They seemed to diminish a little a few weeks ago but have returned to a more severe state. My walking also remains very poor with a maximum range of 400meters. My right little finger is also twitching violently especially in the morning. All my other deficits remain the same. I continue to take the maximum dose of serrapeptase and lumbrokinase, 2 enzymes which are both fibrinolytics and proteolytics. They may be contributing to the renewed flare which I am experiencing. I suspect that these enzymes are irritating the lesion area. Or I could be just having another mini-relapse. I also remain on 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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Postby SarahLonglands » Thu Nov 15, 2007 11:50 am

Hi Alex, I don't know what good the two might do but I do know of a few people who have taken serrapeptase for MS. Only for a short while, though.

This is to cheer you up, though: remembering your tale of over indulgence before carrying in the food at a dinner party and the upside down results, one completely fit and healthy person of my acquaintance was getting dinner out of a low oven last weekend, after a few too many aperitifs. She felt herself falling forward and ended up on the kitchen floor, on top of the food. Stress at work maybe?

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 » Fri Nov 16, 2007 8:11 am

Hi Sarah, I'm glad I'm not the only one to try serrapeptase. I know Marie on cpn is on lumbrokinase. Unfortunately I can't say that they've made any difference. Still it's only been a short while. I must say I'm glad it's the season of indulgence as a glass or two of wine really helps with the stiffness in my leg although I'm not sure I want to end up face down in a pile of food!
I've found pulses on the enzymes to be particularly trying and have so far only managed 3 days in a row on the metronidazole and the fibrinolytics, lumbrokinase and serrapeptase. I wonder if they enhance the antibacterial effects. They certainly seem to enhance the tingling when on a pulse. Mmm.
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 » Mon Nov 19, 2007 10:41 am

The good news is my right hand little finger has almost entirely stopped twitching. Hooray! The bad news is the tingling and stiffness around the left knee has reappeared as has the tingling on the sole of my foot which had disappeared for a brief encouraging few weeks. As for my walking, well I've given up even attempting more than 400 meters as I'm too likely to trip over at the moment. 8O
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 Nov 20, 2007 4:41 am

Alex, I know how you feel with regards the walking: its so embarrassing if someone sees you trip up then wants to be the good Samaritan and drag you to your feet, even offer to carry you, for goodness sake. I wouldn't attempt further than that without, say, my bike to push or my two trekking poles. The trouble is, old nerve damage: scars which will take years to improve and new pathways to find. I could have carried on taking doxycycline forever and they would still be in evidence. I have come to realise that I will first of all have t be happy that I have halted the MS, then see what I can reclaim further to that, knowing that my mind is as bright as it was when I had just finished school and I have regained the use of my painting arm.

Sarah :wink:
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 Nov 21, 2007 4:08 am

Yes, the walking is especially depressing as I've clearly got worse since this summer's relapse. I think I had been averaging about 700 meters since 2004 but now I'm scarcely managing 400 meters. This has been for about the last 6 months so I expect it is yet more permanent damage.

Still maybe the enzymes will break up the scar tissue. Hope/delusion springs eternal.
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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enzymes and antibiotics

Postby gibbledygook » Wed Dec 05, 2007 9:23 am

I have been taking fibrinolytic enzymes for nearly two months now. I started with just lumbrokinase and have cautiously added various other fibrinolytic and proteolytic enzymes such as serrapeptase and nattokinase. I have continued with the doxicycline and roxithromycin and the occasional pulse of metronidazole. I have now managed 40 pulses of this very strong antibiotic. When I take metronidazole with the enzymes my symptoms all tingle and hurt a very great deal. Whenever I have added an enzyme I have experienced a great deal more tingling and sometimes spasms at night. When I started the serrapeptase I experienced a great deal of pain and stiffness in my left knee area and left sole as well as tingling in the right foot. This became more bearable as the weeks passed. Then when I added nattokinase I again experienced a flare of spasms and pain and tingling and this is gradually improving. I definitely think the enzymes are doing something although I'm not sure what!
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 robbie » Tue Dec 11, 2007 2:43 pm

Hi Gibbleygook what keeps you taking the antibiotic for 2 and 1/2 years? it must be helping.
Had ms for over 19 years now.
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