Gibbledygook's antibiotic log

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

Postby MacKintosh » Tue Jun 19, 2007 11:35 am

Okay, I certainly don't have the scientific expertise to speculate on why the protocol 'isn't working', but I do have a couple of thoughts to contribute.

First, it may well be working. There might have been a horrendous downhill slide that's been stopped by antibiotics. There's simply no way of knowing. Considering the various CRAB drugs have a less than stellar track record of stopping progression or precluding additional exacerbations, I'd call this a not inconsiderable abx benefit.

Second, MS symptoms manifest themselves due to inflammation. Not giving one's body and systems time to clear the detritus of dead cpn carcasses only contributes to the inflammation we are all fighting. The reason for cycling flagyl is to allow the body recovery time, during which healing and gains take place. There is no room for this recovery, repair and replacement in a continuous flagyl program.
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 wiggy » Tue Jun 19, 2007 4:18 pm

So sorry to hear Alex,
You couldn't pay me to do continuous flagyl as I can barely get down 15 pills at pulse time. I would give your body a break from flagyl for some time and see how you feel once you have recovered again.

You were doing great from what I recall not too long ago but I would have to go back and read through your blog.

Take Care
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Postby viper498 » Tue Jun 19, 2007 7:40 pm

I know that all everyone hears out of my mouth lately is "Minocycline" i am getting tired of saying/typing it. Alexis, have you tried taking Mino instead of Doxy?

Brock
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Postby Minai » Tue Jun 19, 2007 9:21 pm

Hi Alex,

Like you, my neurologist told me to carry on with the regime, too. As, after only several months on Doxycycline and Azithromycin/Roxithromycin, my MRI results of head/neck/spine showed no enhancement/no new disease activity, either. And, that, even without having started Tinizadole or Flagyl pulses.

Have you actually relapsed since starting the ABX?

Or, have all of your symptoms been from die-off and from the damage/lesions that had already existed before even beginning the ABX?

I know my own expectations are only to be able to prevent further damage caused by infection.

I’d say, “hang in there,” but that’s exactly what you have been doing for years, longer than I :!:

--Minai :)
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Postby gibbledygook » Wed Jun 20, 2007 3:31 am

I have only had one new symptom develop since starting the protocol and all my other symptoms are pretty much the same although my walking may be somewhat worse. Over the last 2 years I had thought some of my symptoms such as paresthesia had improved but this has proved illusory. I have all of the same symptoms as I had before plus a new one.
As I'm moderately disabled I am obviously going to try other meds such as plaquenil to see if they help improve my deficits. I will continue with the abx as I haven't become significantly worse on them.
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 Jun 20, 2007 3:47 am

Dear Alex, you wanted the world and are disappointed that it didn't just drop in your lap. I was aswell, when a year into treatment I didn't find that I was back clambering up long extinct volcanoes in the Auvergne, cycling ridiculous numbers of miles a day. Looking at it logically, though, I had managed to stop the inexorable progression that for me, this awful disease had become. I also had regained the use of my right hand and therefore my ability to paint. Now, even though I am only taking abx for two weeks every three months, I find that I am still slowly, step by step improving.

You had more spinal damage than I had, so it might take longer to work around, but you are determined, or else you wouldn't have stayed the course for so long. I know you want to try for a child next year, so do so. The antibiotics will still be there when you have done that, should you feel the need. But give the non stop metronidazole a small break to allow yourself time to recover. Rebuilding myelin and finding new pathways is not reliant on taking metronidazole continuously.

If you feel down, read back through the improvements you have posted and remember what your brilliant Queen's Square neurologist said last year:

My neurologist 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.
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 Jun 20, 2007 4:05 am

Well, that's the difference between you and I; you've been getting better and better and I'm just the same. I've been taking these pills for over 2 years and have felt no improvement. If the facts change then I'll change my opinion but the facts remain that I have not experienced improvements and so there is still a problem which my body cannot at present heal. Maybe plaquenil and/or statins and/or some other drug may help. The antibiotics alone ain't enough!
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 mormiles » Wed Jun 20, 2007 9:18 am

Hi AG, You said "Antibiotics alone ain't enough!" You also mentioned that you have the goal of getting pregnant in 11 months. If there were ever a time to pull out all the stops and go for it, this is it. Forgive me for not having read your whole log, but I have questions and comments. Have you tried doing the GF/CF diet lately now that you've been on the CAP this long while? What have you been doing for gut repair? Have you ever been tested for heavy metals or undergone chelation therapy? If you have had chelation, was it done as a stand-alone treatment? What are your anti-fungal and pro-biotic regimens? Do you sleep well? What anti-virals are you taking? Do you have any allergies? I won't ask about hormone testing, because I know enough about your history to guess that your hormones have been tested out the kazoo.

I'm a die-hard proponent of the CAP but an even stronger proponent of comprehensive treatment. By the time someone manifests MS, there are various factors at work. Since you are committed to improving, I hope you will consider addressing as many factors as possible. If you have elevated heavy metals, then abx or antivirals or antifungals won't get rid of that source of inflammation. Elevated heavy metals cause glutathione depletion and make you vulnerable to chronic infections in that way and in other ways too. Chelation therapy address the heavy metals problem, but it won't get rid of chronic infections or heal the gut. Treating for chronic microbial infections will not fix your gut problems in an acceptable length of time, especially if you are not on a GF/CF diet and if you are carrying a heavy metal burden. If you are not sleeping well, which is typical for people with elevated heavy metals, you are not producing enough growth hormone, and your body is not repairing and regenerating as it should. The CAP may indirectly help some with chronic viral infections by virtue of an improving immune system, but if you have significant viral infections, they need to be addressed directly. If you are beset by allergies, they will probably improve with the CAP, but that will take a good while; in the meantime, they do their own nasty number on your CNS.

Not every MSer will have all these problems to a great degree, but I believe that many do...and you may be one of them. If you are, I'm sure you can see why depending on any one treatment alone will always disappoint. If you're "going for broke," now's the time to launch a full frontal assault on the fullest complement of enemies that you can identify.

By the way, heavy metals cross the placenta---there is plenty of information about that from the Autism community. On the subject of heavy metals with regard to fertility and pregnancy, these links are definitely worth checking out:

http://www.informaworld.com/smpp/content~content=a713851573~db=all

http://humupd.oxfordjournals.org/cgi/reprint/4/3/301.pdf

Best wishes, Joyce
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Postby gibbledygook » Wed Jun 20, 2007 9:29 am

Hi Joyce, thanks for the info. I tested positive in 2004 for aluminium but for no other heavy metal. Since that time I haven't used deodorants/anti-perspirants with aluminium.
I think my gut is having a rum old time with the abx so I try to take acidophillus as much as possible but I don't do any diets since I tried the best bet diet for about 6 months, lost 2 much weight and suffered my worst deteriorations during that time!!! I guess I'm doomed. I mean even marijuana makes my symptoms worse!
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 mormiles » Wed Jun 20, 2007 10:21 am

GA, I may not have read all of your log, but I have read many of your posts. You don't seem to be your best self right now. I'm not one of your tight buddies, but I like you well enough to tell you the truth. You have a deep-seated desire to have a child, but your words don't reflect a deep-seated motivation to make the best of the coming 11 months. Lay off the weed and get your self back. All my best, Joyce
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Postby tory2457 » Thu Jun 21, 2007 5:22 am

I too haven't read your entire blog, but I have read your latest posts.

If you are having gut problems, would you consider a probiotic that tons of people swear by?

Theralac is very good. They explain how it works, why it could cause you some "herxing" when first taking it and then when your GI tract is balanced to continue keeping it healthy. So many of these bugs lie in our GI tracts causing us discomfort, and problems. Staying away from sugar and flour is always recommended when GI problems continue. Docs believe that with the right probiotics most GI issues resolve.

Do you also supplement with Saccharomyces boulardii ? This is the good yeast.

Here's 2 probiotics.
www.theralac.com
www.florastor.com

Personally, because of the very good success rate of Theralac, I take one a day, but I do supplement with S. boulardii.

I also make my own Kefir. It's a natural probiotic; here's a website filled with information about the wonders and benefits of Kefir. I found this very guy sells his Grains of Kefir on ebay (less expensive than on his website.) :)
http://users.chariot.net.au/~dna/kefirpage.html

hang in there,
tory
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52 days of metronidazole at 1200mg

Postby gibbledygook » Tue Jul 03, 2007 3:51 am

I managed 52 days of metronidazole at 1200mg a day and 11 days of plaquenil at 400mg a day in addition to the doxicycline and roxithromycin. I then had a 5 day break as the combination of plaquenil and metronidazole is fabulously depressing and I would not recommend it for the borderline suicidal.

I then resumed the metronidazole 1200mg daily after the tingling in both feet became unbearable and I felt I had to do something. I was considering steroids. Curiously even though the tingling in both feet is terrible I don't seem to be getting the night spasms which have bothered me since late 2004. In fact the spasms are possibly on a diminishing trend although they will doubltless reappear this evening. Whenever I think something is improving it reappears. I have now been on metronidazole for the 69th day out of the last 82. My feet feel more and more like hot sausages especially at night. This makes walking terribly difficult. This is either a relapse or something to do with the antibiotics/plaquenil. I think but I'm probably just hoping that this is the antibiotics/plaquenil because there are no spasms. Surely if it were a relapse my spasms would get worse? But no, nothing is known with this disease. I'm sure relapses sometimes involve improvements in one area and worsening in others.

I'm very grateful for this website which has enabled me to keep a log of my antibiotic journey. If I ever see physical improvements I will be able to precis the very lengthy ups and downs involved.
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 mrhodes40 » Thu Jul 05, 2007 7:36 am

Hi Alex,
wow what a journey this is eh?
I am writing on my thread but please read that as I am in the same place you are and really identifying with your issues. As I wrote it here I thought this is getting too long and too much about me...marie
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Postby gibbledygook » Thu Jul 05, 2007 8:45 am

Hi Marie,

Glad to see you're writing updates. I am still none the wiser on this treatment! My feet definitely feel odder and spongier of late which I optimistically think maybe the lengthy continuous metronidazole but haven't a clue really. Maddening!
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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Real difficulty eating

Postby gibbledygook » Wed Jul 18, 2007 7:45 am

I've managed another slog of continous metronidazole and have been on this revolting medicine for 82 out of the last 95 days. My appetite is now utterly pitiful and it's a real job swallowing stuff especially nasty protein. Yuk yuk yuk. Yuk. The only help for this is the weed which does a very efficient job at relieving lack of appetite but for me, makes my walking, bladder function and burning paresthesia worse.
I have also for the last 2 weeks used a portable infrared sauna which I aim mainly at the spinal cord but have also had a blast at the head. This is actually contra-indicated on the machine but as this disease is very much a disease of the head and spinal cord then that is where the infrared rays are going! I have had a bit of a throbbing head since then especially near the sinuses where it feels like there is a lot of pressure. I also noticed a lot of movement induced phosphenes. Otherwise my walking is much the same and the spasms have returned in force. I'm on at least 4mg of zanaflex at night to get to sleep. The tingling at night in both feet is extremely strong and there are all sorts of darting stabbing pains as well. At this time I quite frequently wonder whether I'm actually having a relapse or not but in the mornings I am much the same so haven't bothered to have a course of steroids yet.
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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