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Posted: Sun Mar 16, 2008 9:22 am Post subject: Mamahawk March 2008
OK...
I'm trying to remain calm.
I've been slacking. I admit. And now I guess I'm paying for it and need to get back on track ASAP. Any help appreciated.
For the past 18 months, I've had no symptoms - occasional tingling in the feet and lower legs during a flagyl pulse - but felt great with no issues in between. Last summer - - because I was feeling SO good... and was so busy, I stopped doing flagyl pulses regularly (started in May 2006 and did them regularly until summer 2007).
Fall was still busy and I felt great with no symptoms - still have been taking Doxy and Azith, but only managed 2 pulses - and had slacked off on vitamins also.
Bad, I KNOW.
Add to that a recent death in the immediate family that shook us all up, resulting home stress, issues at work and a few late nights and sick kids in the house (I can tell I've been fighting something off).... and now this.
Past 3 days -
Tingling in lower legs, fairly strong (still happening right now).
Yesterday, a numb spot formed on my upper back and through the night has traveled down to my shoulder. No weakness, no decrease in function (I'm typing with both hands at normal speed)... maybe a little bit of stiffness upon waking.
The odd sensations woke me at 2am, and combined with the leg tingling of 3 days freaked me out sufficiently that I started a Flagyl pulse at 2am.
I read about pseudo-exacerbations from Anecdote and others.... and I'm trying not to panic.
These symptoms are a mix of old (tingling legs and affected left arm) and new (the numbness in the back is new.)
And I'm reading how some people go for 2 years (before ABX tx) with no symptoms.... so was I just asymptomatic and now am having my second flare??
Talk me down.
Remind me what vitamins are most important.
I need to get back on track.
Thanks for any help.
And Damnit it I just saw my neuro LAST WEEK and was proclaimed "BORING" by him because I had nothing new in the past 2 years. Damn Damn Damn. _________________ Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: Minimal occasional tingling, 10/07 MRI NO progression.
I know those with more experience will be along to tell you what to do. Just know that it will be okay. You just need to get back on track. I understand it is hard to know when you can stop abx but from what I have learned it is a longer time than when you start feeling better. That is when the temptation hits to stop. But I guess that is when you are supposed to keep going.
Good luck!
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Sun Mar 16, 2008 10:28 am Post subject:
Mamahawk, Please read my recent posts on the thirty day flagyl post. I, too, was slacking on flagyl and little things started nagging at me! I'm at sixteen days of flagyl right now and all those 'symptoms' have backed off.
I remember reading, some time back, that this could happen, without flagyl, and perhaps Sarah can enlighten us as to the science. I'm thinking I needed to kill off and rid my body of the cpn I'd driven into hiding with doxy and azith and so I'm OVERdoing on flagyl right now. And I'm right there with you as to stress. It sure doesn't help matters.
Important supps? I'd push C and CoQ10 hard right now. Basically any antioxidant, to help fight this. Inflammation is not your friend, no matter how it's caused (and killing cpn causes inflammation). You have to flagyl-kill and then get this toxic waste out of you. (I'm out of town, with limited internet time right now. More later) _________________ 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
Lori and Mac~
Thank you for the quick replies.
I'm 10 hours into the Flagyl pulse with 2 pills taken.
I'm starting to maybe feel fatigued... but not sure if it is the kids' cold I've been holding at bay or Flagyl. The left arm is definitely not right. I'm wondering if this pulse will be easy or hard... I've had both.
I'm kicking myself from slacking on the vitamins and pulses.
I was just feeling SO good.... better than I had in years and years....
all this stress, grief, and sickness hit at once and not taking care of my regimen has magnified it.
I'm going to go read your 30 day flagyl post, Mac... _________________ Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: Minimal occasional tingling, 10/07 MRI NO progression.
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Sun Mar 16, 2008 11:39 am Post subject:
Mamahawk, try not to worry - its true that one can go for a couple of years or more without a relapse, I did when I was in my twenties but after that they came increasingly thick and fast. Al this, though was without any treatment whatsoever. As soon as I started abx in my early forties, it all stopped.
However I posted this only yesterday:
Quote:
"In response to Ken's (Notasperfectasyou's) comment:
Quote:
What’s interesting to me is that much of the side effects of CPN die-off could easily be confused with an exacerbation. Weird crap can happen in an exacerbation and die-off isn’t to terribly different. It seems to me that both are grounded in inflammation brought about by one thing attacking another thing in the CNS. Along this line of reasoning, I think this is a problem for folks in the “learning” stage.
Robbie asked:
Quote:
In people with rr ms is there a difference in an mri that is taken during a relapse as opposed to one taken during a remission and if so could this be used in a case like this to determine weather it’s die off from abx or it’s ms causing these conditions.
My experience here is relevant: I had progressive disease with relapses and became an open-ended add-hoc trial of one, performed by the radiologist and my husband, the microbiologist. To this end I was given four MRIs over a two year period, charting improvements or otherwise. The second MRI in this sequence was done somewhat after six months, and at very short notice. This was because they wanted to use the same machine and the same radiographers each time and this had to be fitted in around all the other hospital business. The result was that I was nearly at the end of a flagyl pulse when told I could have the MRI the next day, so I stopped the pulse immediately and was incredibly worried because I was experiencing the only real reaction to the drug that I had gone through. I was experiencing pains in my still coming back to life right arm of bone breaking intensity. It was reflex sympathetic dystrophy, a neuropathic pain with its roots in the central nervous system, not the peripheral nervous system. Of course I was worried what of this might show up on the new MRI.
I needn't have worried because nothing new showed up at all, only the fading of intensity of the newer lesions which had still been active at the time of the previous scan. This was repeated six months later, with even more improvements. The same six months on again, although this time I had more reason to worry because I had been kneeling on the floor of my studio and discovered that my left knee was complete numb. I was due for the scan two days hence and having become somewhat blasé by this time, I was halfway through a flagyl pulse, despite being on intermittent therapy by that time. The numbness in the knee had stopped by the time of the scan but it was reappearing in various parts of that leg and this continued for another week. All that was found new this time though was that some of the most recent lesions had actually vanished.
So twice I had what many people might have taken to be a relapse, both times I was taking flagyl, but it didn't show up at all on the scan.
So from this all I can say that what I thought was a relapse wasn't, so when you suddenly deterioate during a flagyl pulse and only then, you can be pretty sure that its the flagyl, not the MS."
I can't say whether what appeared to be a relapse both times was due to flagyl or not because they were the only two times they occurred. All I can say for certain is that they weren't relapses and nothing showed up in the MRI. It didn't stop me from being worried, though. The strangest thing in both cases was the way the pain the first time then numbness the second, moved around. Also, the left leg incident was really in a new place: my first reported symptom was in my left though, not my knee and below. David thinks that this one, especially, happening so long after starting abx was nothing to do with a live pathogen at all, but endotoxins in the form of dead cell fragments which can linger for years after the pathogen has been killed.
For this reason I don't think you need worry bout having been slack with the pulses. In any case, you are holding the pathogen in stasis with the other two abx: they can't do anything other than eventually die off when their time has come. Of course, you will worry and you will do some more pulses, which is no bad thing because you will get rid of any remaining non-active pathogen that much quicker.
Mac has already addressed to supplements but I would just add that B12, B complex and of course D3 are very necessary for someone with MS, especially someone with the number of lesions you had on diagnosis. B12 especially aids nerve regrowth. Fish oil will probably also aid remyelination.
I'm sure that if your neuro were to see you next month he would still declare you BORING. That's the way to be!
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Thank you for responding Sarah - and the posts you quoted were the ones I read this morning and put my mind a little at ease.
I ordered more Vit D and B12 sublingual as I was out of the D and low on B12... and dutifully took my vitamins this morning. I also rested in bed for a bit and the tingling is gone for the time being and the back and shoulder skin feels a bit less numb, but it is still noticeably different.
I'll post more as the pulse continues.... but while I am in awe of Mac staying on Flagyl so long - I honestly don't think I could make it past a week. I did 6 days once and it was just short of unbearable. I'll complete my 5 days, stick to the vitamins, rest up and see what happens.
The next flagyl pulse will unfortunately need to be postponed as we will be on vacation for 10 days in the middle of April.... will definitely make plans to stay on track after that though! _________________ Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: Minimal occasional tingling, 10/07 MRI NO progression.
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Sun Mar 16, 2008 2:08 pm Post subject:
Mamahawk, I am totally in awe of anyone making a pulse that long. I never have done more than five days, but quite honestly, the best thing is just to do it for as long as you feel able and still continue to function.
Also, I think the 10 day vacation will be as good for you as anything, so no worries there!
Stress and worry are two of the worst things for anyone, so as you say, rest up and see what happens. Better let us know though because we have worry levels as well.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Posted: Wed Mar 19, 2008 10:05 am Post subject: Wednesday
The odd "numbness" is still there - it's almost like a stripe across the top of my shoulder - neck to arm, about 3 inches wide. Very weird and not pleasant. I started to panic this morning as my arm felt very weak while I was typing... and the feet and leg tingling are coming and going.
Yesterday was a very bad nausea day, as was Monday. The past hour or so, I strangely feel no nausea (Flagyl 5 hrs ago), and feel fine except the shoulder and feet are tingling. ???
Every pulse is so different for me.
The nausea last night was probably the worst it has ever been and I just generally felt truly awful.
I still am fearful that this is an exacerbation - but as I have only had the one bout with weird partial blindness and then the excessive stocking-glove tingling and left hand difficulties - I don't know what to think
Last night I was ready to quit the pulse and try again at a later date, but today I will forge on until Day 5 - Thursday 2pm or so.
By Friday afternoon, hopefully things will have turned around once the Flagyl is out of my system.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Wed Mar 19, 2008 10:21 am Post subject:
Mamahawk - Hey, read my running commentary on days one through nineteen of flagyl. I'm going through a few of the same things and I have been on abx since 06 October 2005!!! I don't, however, think this is an exacerbation! It's the flagyl doing what it's supposed to do. It's killing the bacteria. The bacteria is dying and causing inflammation when it releases its toxic self into my system and then it needs to be flushed out of me, never to return. Oh, and the nausea? Had that twice this week, which really never happens to me. Kept a wastebasket near the bed and tried like heck not to move or breathe til it passed without incident a few hours later. _________________ 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
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Wed Mar 19, 2008 10:33 am Post subject:
Mamahawk, when I got my reflex sympathetic dystrophy in my right arm, it started during a flagyl pulse, I has an MRI at the same time, much
to my horror. Nothing showed up, though, so I then spent six months worrying until the next one thinking that it was maybe too early for it to show up and I should wait until the next one. When that arrived, again nothing.
If you feel like you have had enough, though, stop and do another one after your April vacation.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Mac- I did read your thread and, well - sorry about the mutual nausea... mine also was a breathe-and-don't-move day yesterday. Not a good day.
And I have a sick little one home yesterday and today, so I can't just stay down.
The thing that is worrying me - os that this symptom didn't START with the Flagyl - I started the Flagyl after waking up Saturday night/Sunday morning and realizing that my arm was progressively getting numb.
If it had started after the Flagyl, I wouldn't be so worried.
At least it isn't progressing anymore.
My feet are back to tingling since I've been sitting here, so I am headed upstairs to lay down. No nausea today at least.
With this strong reaction to the Flagyl this time (and Mac's after so many months on it) how will we know when it is OK to stop??
After feeling so well and doing Flagyl for a continuous year and some months, I felt like I might be done - then this shoulder thing and the tingling hit again! _________________ Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: Minimal occasional tingling, 10/07 MRI NO progression.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Wed Mar 19, 2008 11:02 am Post subject:
Well, there's no way I'd consider stopping before two years, no matter how mild the case appeared. I just don't trust the one-year thing for myself - figuring I've had cpn since I was eight years old, though I know Sarah did it. She has the benefit of a microbiologist down the hall, though, and he would notice if she were slipping back into the abyss. I'm on my own in this, with the infrequent doctor visit as back-up.
Remember, I started this thirty-day flagyl journey because there were vague, nagging symptoms and I do have a sort of numb patch on my thigh, which started before the flagyl. I also have an occasional one just behind my right shoulder, which irks me and I think it should have gone by now.
Why is this happening? Because nineteen days of flagyl penetrates more tissue, longer, than five days. Because, once the bacteria has been killed in some easier to reach spots, then it does its work in the tougher or more heavily infected spots. I'm less worried about why it's happening, to be honest, as I'm just happy it's addressing more pockets of cpn and wiping them out. If I have to be uncomfortable, I do. And I haven't missed a day of work yet, due to this treatment, so I know what you mean about those days when you can't lie down, even though you really want to! Hang on; you know better days are coming. Just think how bad you could have been without the abx protocol and the perspective comes back. Hate being sick with the meds but I'd hate being in a ball in some convalescent home. _________________ 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
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Wed Mar 19, 2008 12:01 pm Post subject:
But I didn't stop after a year! Intermittent therapy is just way of continuing but with breaks from full time treatment. I could go for two then three months without feeling anything coming back and in this time I got improvements. If I hadn't experienced it like this, I would have been back on full time treatment like a shot!
I don't really know what to say about when anyone should finish , except that if you still respond tom treatment, you still have something there. By responding I don't mean just feeling depressed or tearful when doing a pulse, because that is just the way some people respond to nitroimidzoles.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
Joined: Sep 25, 2005 Posts: 359 Location: Chicago area
Posted: Wed Mar 19, 2008 12:07 pm Post subject:
True, true. And I meant going on intermittent. No way would I just quit cold.
Without hijacking the thread, I was set to go to intermittent by June of this year until the idea of rifampicin caught my attention. I decided to start rifampicin after this month. Now, with this reaction to flagyl, which isn't huge, but it's more than I've seen in many pulses, I think I'll wait on the rifampicin and do one more long, heavy pulse of flagyl April into May, when I'm on vacation from work. Then I'll do rifampicin for a few months before going to intermittent.
Sarah, I think the fear of the unknown is my deciding factor. If I had someone close by all the time, who would notice a change or a decline, I'd be more willing to go intermittent sooner. I'm not the most objective observer of my own situation, I'm sure, so I'm probably 'overdoing' killing the cpn to make sure it's gone forever before I back off. _________________ 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
Joined: Jun 18, 2004 Posts: 1472 Location: Bedfordshire UK
Posted: Wed Mar 19, 2008 12:49 pm Post subject:
Both of you, I would be exactly the same.
Sarah _________________ An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.
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Nothing showed up, though, so I then spent six months worrying until the next one thinking that it was maybe too early for it to show up and I should wait until the next one. When that arrived, again nothing.