Mamahawk's Regimen

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

Postby mamahawk » Fri Mar 31, 2006 9:44 am

I'm going on vacation with my family, then I will start the Flagyl when we return.... but I WILL enjoy the vacation!

I'll post after my First Flagyl post.... I'm quite nervous.

And YES - this is the BEST.
As I told my Dr. - maybe the antibiotics are not the cure - BUT WHAT IF THEY ARE?

I am his first patient on this regimen, and he is very interested. A Dr. friend has been looking into all of it also and he is very intrigued with the whole idea and the CPn Help website made alot of sense to him from a medical perspective.

I am not looking to be a poster-girl for ABX or anything, I just want to Feel this Good.... and lose the lesions.
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Advertisement

Postby MacKintosh » Fri Mar 31, 2006 9:52 am

Hey, NONE of us wanted to be the poster child for anything! (Besides, Sarah beat us all to the punch!) If this miserable disease hadn't interrupted our lives, none of us would be here, posting, commiserating, encouraging. But it DID, so we ARE, and I think the world will ultimately be far better for it. You know, wimps have never been the ones chosen to carry messages out into the world and I think this is no exception. Welcome to the rollercoaster ride that has become our life or mission or whatever this is! :-) And enjoy your family vacation! Flagyl will wait.
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
MacKintosh
Family Elder
 
Posts: 465
Joined: Sat Sep 24, 2005 3:00 pm
Location: Chicago area

Postby SarahLonglands » Sat Apr 01, 2006 5:59 am

I second that, do enjoy your family vacation because flagyl can certainly wait. Some people can get through a flagyl pulse absolutely painlessly, but it still tastes the same. Mackintosh coats hers in jam. I now use tinidazole which doesn't taste quite as bad.

I was absolutely horrified when I was given the diagnosis of SPMS at a time when I was afflicted with a paralysed right arm and so unable to do anything much at all. I was a write-off as far as my neurologist was concerned, so thank heavens that some of that profession are willing to at least try non conventional treatments. Yours is worth his weight in gold.

Sarah :D
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.
SarahLonglands
Family Elder
 
Posts: 2104
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Flagyl question

Postby mamahawk » Thu Apr 27, 2006 10:27 am

OK, back from the vacation and all should be calm once more next week, so plan to start the Flagyl Sunday or Monday.

I felt GREAT before vacation - great during vacation, I came home to the PILE of work and have been extremely grumpy, moody and the tingling came back the day after we returned.... grrrrrr..... I did not follow the diet closely on vacation, and I missed several vitamin doses - did take the abx correctly though.... but still very tired since returning, stressed and tingling, hands not quite right for a few days. Not liking that at all.

Hoping the flagyl pulse will force me to take some down time.

Questions:
1. Do I need to avoid Calcium for Flagyl also - ?
Reason I ask is I take my acidophilus+vitamins at breakfast and dinner, doxy (+MWF)zith with lunch, LDN at bedtime..... trying to figure out how to best fit in the 3 flagyl.
Any suggestions for pill times?

2. What range of reaction is to be expected for the first pulse? Should I make sure someone is on hand to care for my kids? Or is that melodramatic?

3. What about amoxicillin? Is this now being added to the doxy-azith-flagyl protocol? If so when to start and how much?

THANKS in advance for any help...
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby MacKintosh » Thu Apr 27, 2006 11:20 am

Oh, feathers! Hate to hear you had a little slide from your vacation experiences. Isn't it amazing how missing a few vitamins/adjuncts affects the way you feel? But, on the upside, you know you're headed in the right direction, so let me try to help a little.

I now take vitamins/adjuncts first thing, then abx sometime before lunch, then vitamins/adjuncts mid to late afternoon, then calcium/magnesium/Bcomplex after dinner, then melatonin before bed. I don't do charcoal, which I guess some people have trouble fitting into the routine.

When I do flagyl pulses, I try to time it for a weekend, so I'm not doing all three abx most days of the flagyl pulse. I take it morning, noon and night, pushing my vitamin/adjunct times around a bit to accommodate the flagyl. Basically, it's flagyl on waking, with a cracker or a bite of banana or something. I don't usually have breakfast, but my prescribing doctor says a little oatmeal or a small meal is okay to preclude stomach upset with abx. Then vitamins before I leave for work, or vitamins first thing at work with water or coffee.

Depending on what time lunch is, I take other abx before or after lunch by about an hour, and I add the flagyl in with doxy or take it about half an hour to an hour apart from doxy/azith on the days I have to do all three.

Then, adjuncts around dinnertime, calcium, magnesium, Bcomplex mid-evening, then flagyl pretty late and melatonin just before bed. (I've been known to take that last flagyl pill when I wake at two or three in the morning, too. Sometimes I simply run out of time to take everything, so I leave the flagyl on the sink to remind myself to take it when I visit the bathroom. I've been experimenting with just snapping the flagyl in half, though and taking one and a half pills in the morning and one and a half in the evening, which gets me the same dosage and frees up the sheduling a bit.

Get the phone number of a friend who can cover you if you feel really awful, but most people are quite functional on flagyl, so don't get all apprehensive. I have virtually NO reaction to it at all. A big letdown, in a way, after all the apprehension over taking it the first time! :D P.S. Coat your flagyl with jam and you will avoid the awful taste. Don't lick your fingers after you coat it, though. The taste will be on your fingers and you'll undo the benefit. GOOD LUCK!!!!!!
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
MacKintosh
Family Elder
 
Posts: 465
Joined: Sat Sep 24, 2005 3:00 pm
Location: Chicago area

Postby SarahLonglands » Thu Apr 27, 2006 11:59 am

Oh feathers? That's a new one to me! That's a very well laid out regime, though, despite the fact that I can't imagine going without breakfast.

Mamahawk, you sound like some of my friends, who feel they need to go away on their own quiet vacation on returning just to recover fro the vacation. You don't need to avoid calcium with flagyl, only with doxycycline. You can also take all your doxycycline at once. I started doing this quite soon, to make it easier to fit everything in. Also I rarely took/take charcoal because I don't find it makes any difference to how I feel.

With regards to flagyl, Mackintosh's idea of splitting one in two and thus only taking two doses seems like a good one, alternatively, take tinidazole, more expensive since it is still under patent, but only two lots of 500mg are reqiured. It does tend to be more easily tolerated aswell, plus it doesn't taste so awful.

As far as reactions go, you might not get any, as some people, like Mac and me didn't. Well, I did once, but only once. It does tend to make you feel more fatigued than normal, though, and a bit tearful.

Amoxicillin used to be used at Vanderbilt, but they have now abandoned it in favour of N-acetyl cysteine, which you are probably already taking. Its advantage is that it cuts down the number of abx you need to take. This is a god page to read: http://www.davidwheldon.co.uk/supplement_rationale.html I have found that taking larger amounts of alpha lipoic acid helps reduce any peripheral tingling, for some reason: up to 1200mg a day.

If you feel too tired, leave the flagyl until you feel a bit more energetic, because there is no reason at all to rush into it.

But as MacKintosh says, "GOOD LUCK!"

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.
SarahLonglands
Family Elder
 
Posts: 2104
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby wiggy » Thu Apr 27, 2006 4:36 pm

Good Luck! I am going to ask my doctor if I can try the tinidazole instead of flagyl to start, but this will not be until the end of June, let us know how your first pulse goes.
User avatar
wiggy
Family Elder
 
Posts: 122
Joined: Fri Feb 03, 2006 4:00 pm

Postby mamahawk » Mon May 15, 2006 2:07 pm

Well, I started the Flagyl - Sunday at 9:30am.

After a particularly stressful, emotional week - I came down with a nasty cold last Thursday (I'm assuming a virus since I am taking Doxy and Azith), my first since leaving the hospital in October 2005. I decided to start the Flagyl even though I already was sick because
1. I had been procrastinating about starting.
2. I already felt crappy, so why not test the Flagyl.
3. My husband was home to watch the kiddos.

Well, I don't know if it was wise, but it is done - and I don't know if the cold is just really awful or the Flagyl could be causing the excessive cold symptoms. The fever started within an hour or two of taking the first pill and my nasal congestion is ridiculous...

I'm sticking it out for the 5 days, because this week is unusually quiet and unscheduled and I want to get the first pulse under my belt.

So, what are some reactions to Flagyl? Am I just really sick or is some of this Flagyl?
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby SarahLonglands » Mon May 15, 2006 3:18 pm

Well, in one way it was a good time to start because of your husband being at home to watch the children, but in another way it wasn't such a good time because you had a nasty cold to start with. I would guess that what you are experiencing is a mixture of the two. Nasal congestion and a fever are certainly possible results that flagyl is doing something, but then you also get them with a cold. However, it seems rather more than coincidence that the fever started so promptly after your first flagyl dose. This is reminiscent of when I first started doxycycline, not really thinking that anything would happen. Within a couple of hours I felt as though I was going down with something. I felt peculiarly vacant and just wanted to go to bed to sleep. I remember standing on our middle landing, after trying to creep upstairs to just go to bed, not easy at the time so David heard me and came out of his study. It seemed like he just wouldn't stop talking and I just wanted to go upstairs to sleep.

The first dose of flagyl affected me similarly, but not quite so much. I did get something of a fever and night sweats, though. Another thing which affected me was a kind of lupus butterfly rash over my nose and cheeks for a week or so. If you feel you can manage the full five days, do so. I did but I didn't at the time know that I needn't. The next time I think I cut it short at four and a half days. If your congestion gets too bad you might want to do this. Your husband might want you to! Other things you might experience are to do with the bowels, either hard or loose, headaches, more tiredness than usual and a certain amount of depression. Then of course, there are the dreaded herx reactions which some experience but I didn't except once, or a few days. If you don't get these, don't worry, it doesn't mean the treatment isn't working. Now have an early night!

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.
SarahLonglands
Family Elder
 
Posts: 2104
Joined: Thu Jun 17, 2004 3:00 pm
Location: Bedfordshire UK

Postby mamahawk » Fri May 19, 2006 9:19 am

Well, I had to cut it short at 3.5 days. I spent much of that sleeping, with terrible congestion, debilitating fatigue and feeling of disconnectedness. The last day, severely loose stools started and just about did me in and I cut it short.

Will try again next month when I don't have a cold to start with and see what my reaction is.

I vaguely remember itching during those sleeping days... but was pretty out of it so never looked.... but last night I noticed that I have a rash on my abdomen, not on my back or chest, but all across stomach and sides, with a 2-3 inch rash-free area down my midline. Very odd. It itches slightly and is very slightly raised, with a red lacey pattern.

Part of the cold virus I am battling? Or a reaction to the pulse?

Very odd...
Any thoughts or anyone ever have this?


OH - and I wait 3 weeks and then another pulse, right?
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby Katman » Fri May 19, 2006 9:54 am

Mamahawk

Does your rash hurt and is it like sandpaper? Have you ever had shingles?

Congratulations on making it so far through your first pulse! Speaking from the vantage point of the middle of my 24th I have only encouraging things to say, the first being that the first one or few - (say seven or eiight) are by far the worst, at least for me.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
User avatar
Katman
Family Elder
 
Posts: 264
Joined: Mon Jul 11, 2005 3:00 pm
Location: North Carolina USA

Postby mamahawk » Fri May 19, 2006 10:02 am

Rica -

No, the rash is not painful at all - just slightly itchy.

No, I've never had shingles but SURE hope this isn't how they start.... I have had chicken pox as a child.

I kind of figured that since I had flu symptoms with no progression to true illness after starting both doxy and azithro that I would react to the Flagyl.

I guess starting when I had a cold and had a particularly emotional week was not too bright, but what's done is done and I will try again in 3 weeks.

Off to search on shingles :?

Thank You ~~
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby mamahawk » Fri May 19, 2006 10:02 am

Rica -

No, the rash is not painful at all - just slightly itchy.

No, I've never had shingles but SURE hope this isn't how they start.... I have had chicken pox as a child.

I kind of figured that since I had flu symptoms with no progression to true illness after starting both doxy and azithro that I would react to the Flagyl.

I guess starting when I had a cold and had a particularly emotional week was not too bright, but what's done is done and I will try again in 3 weeks.

Off to search on shingles :?

Thank You ~~
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby mamahawk » Fri May 19, 2006 10:04 am

Nope, don't think this is shingles - no pain, no blisters.

Phew :lol:

This is a lacey, fine rash.... I'm thinking it must be part of the cold virus, or a reaction to the meds or combination because I sure haven't eaten anything unusual this week - hardly anything is more like it!
User avatar
mamahawk
Family Member
 
Posts: 67
Joined: Wed Dec 28, 2005 4:00 pm

Postby Katman » Fri May 19, 2006 10:12 am

To the contrary, I think that is a really GOOD time to do a pulse! If you are already miserable, flagyl is almost guaranteed to take the edge off and make you something of a zombie anyway. So you won't feel it as much! Only half kidding. But is has certainly been worth it for me.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
User avatar
Katman
Family Elder
 
Posts: 264
Joined: Mon Jul 11, 2005 3:00 pm
Location: North Carolina USA

PreviousNext

Return to Regimens

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users