Mamahawk,
I am sorry you feel so awful but I am sure you will pull through, get back on track - I have done the same. Felt great and over did it and I am not so well and have had to delay my pulse.
I wouldn't worry about the MRI - I have not had a new lesion since LDN, over 2 years ago per my MRI and now you are on abx so I am pretty sure you are protected.
Many of times in that 2 year period, 3-4, I had felt that I am having a flare but my MRI remained stable - I hope you have same results.
Keep us posted!
Mamahawk's Regimen
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SarahLonglands
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Hi Mamahawk, Your feet tingling will only be either an endotoxin clearout reaction, or simply a result of having been so busy. You won't screw up your MRI. They will be looking for active or new lesions and whilst you are on the bacteristatics you should be fine. Those are the only really important things not to take on a hit or miss basis. Apart from the odd day when you get a stomach upset and can't keep anything down.
After this pulse, don't rush the next one just to get it done before your MRI. If anything, it would be better to leave it until afterwards. You just need to calm down and get back on track. Have a restful weekend, if you can.
Sarah
After this pulse, don't rush the next one just to get it done before your MRI. If anything, it would be better to leave it until afterwards. You just need to calm down and get back on track. Have a restful weekend, if you can.
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.
Pulse #5
First pill 2:30pm Sept.16
Last pill 6:30am Sept 21
For the FIRST TIME - I had NO ill feelings the first 46 hours. Nothing - nada. Felt completely normal.
Compared to the first pulse where I was fluish and in bed within an hour of taking the pill. I was so unexpectedly surprised!!
The third day I felt yucky - but not terrible, and felt kind of yucky for 3-4 days, but not debilitating. I rested and this was the easiest pulse yet.
The tingling did hit hard (had been going on for a little bit before the pulse due to a lot of stress, activity, crazy schedule) - but I noticed something interesting - - - When I was having a moment of emotional drama/stress - the tingling slammed me.... Obviously stress effects me physically pretty intensely. It was a very noticeable - the difference in me before and during the argument.
SO - I made a strong committment to eliminating drama and stress and the past week the tingling disappeared again completely!
I felt fabulous the past few days - walked with a friend for 45 min two days - just as fast as we used to a few years ago. I was worried because I have not exercised at all since diagnosis ( I know...bad, but depression really limited me) - but it was like I never stopped!
I was so worried a few weeks ago because I really did feel awful - but I think I just let myself get run down.
Next Pulse: To start October 13
MRI supposed to happen this month~ + recheck bloodwork (CBC,MMA, Vit.D level)
Sarah - I am very strict about the abx - I never, ever miss taking them at lunch... I even carry a supply in my purse in case I am out for lunch.
Now I'm not so worried about the MRI. It's good to feel good again - just in time for another pulse
LOL
First pill 2:30pm Sept.16
Last pill 6:30am Sept 21
For the FIRST TIME - I had NO ill feelings the first 46 hours. Nothing - nada. Felt completely normal.
Compared to the first pulse where I was fluish and in bed within an hour of taking the pill. I was so unexpectedly surprised!!
The third day I felt yucky - but not terrible, and felt kind of yucky for 3-4 days, but not debilitating. I rested and this was the easiest pulse yet.
The tingling did hit hard (had been going on for a little bit before the pulse due to a lot of stress, activity, crazy schedule) - but I noticed something interesting - - - When I was having a moment of emotional drama/stress - the tingling slammed me.... Obviously stress effects me physically pretty intensely. It was a very noticeable - the difference in me before and during the argument.
SO - I made a strong committment to eliminating drama and stress and the past week the tingling disappeared again completely!
I felt fabulous the past few days - walked with a friend for 45 min two days - just as fast as we used to a few years ago. I was worried because I have not exercised at all since diagnosis ( I know...bad, but depression really limited me) - but it was like I never stopped!
I was so worried a few weeks ago because I really did feel awful - but I think I just let myself get run down.
Next Pulse: To start October 13
MRI supposed to happen this month~ + recheck bloodwork (CBC,MMA, Vit.D level)
Sarah - I am very strict about the abx - I never, ever miss taking them at lunch... I even carry a supply in my purse in case I am out for lunch.
Now I'm not so worried about the MRI. It's good to feel good again - just in time for another pulse
LOL-
SarahLonglands
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Mamahawk, I think you misunderstood me when I talked about the bacteristatics:, I wasn't implying that you might be someone who forgets to take them, just not to worry if you ever feel, so nauseous that you can't keep anything down.
Its good that your pulse seemed to go easier this time, but it is certainly true that stress can make it infinitely worse so is best avoided if at all possible, certainly during a pulse, at other times as well, if possible, but who can do that? Not me, for certain.
Also with the exercise, there are some times when you just can't bring yourself to do it. I never did any during the first few months after diagnosis: I might have made some feeble effort, but rapidly gave up. Improvements kind of started despite myself, though and certainly after my first follow up scan, about six or seven months later, I set to exercising to make the most of these improvements. You are lucky, though, never to have been anything like as bad as I had rapidly become. I am still working on the day when I will be able to set off and do a 45 minute walk just like I used to!
Now, your next MRI: I got a message today from someone else on antibiotics, who doesn't mind me broadcasting this, he is RRMS and has an MRI annually. He got the results from his latest one today, after thinking he had been having an exacerbation. Result: no new or active lesions, just a few old scars from previously. He said that the waxing and waning on the antibiotic protocol is tough but not having lesions was a relief. That should hopefully make you feel even less worried.
Sarah
Its good that your pulse seemed to go easier this time, but it is certainly true that stress can make it infinitely worse so is best avoided if at all possible, certainly during a pulse, at other times as well, if possible, but who can do that? Not me, for certain.
Also with the exercise, there are some times when you just can't bring yourself to do it. I never did any during the first few months after diagnosis: I might have made some feeble effort, but rapidly gave up. Improvements kind of started despite myself, though and certainly after my first follow up scan, about six or seven months later, I set to exercising to make the most of these improvements. You are lucky, though, never to have been anything like as bad as I had rapidly become. I am still working on the day when I will be able to set off and do a 45 minute walk just like I used to!
Now, your next MRI: I got a message today from someone else on antibiotics, who doesn't mind me broadcasting this, he is RRMS and has an MRI annually. He got the results from his latest one today, after thinking he had been having an exacerbation. Result: no new or active lesions, just a few old scars from previously. He said that the waxing and waning on the antibiotic protocol is tough but not having lesions was a relief. That should hopefully make you feel even less worried.
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.
No Sarah! I didn't take it as a chastisement - I just wanted to make it clear that I understood the importance of the Doxy+Azith.
THANK you for sharing the story of the other person. I am feeling so much better that I am not afraid of the MRI anymore, and the story helped. In fact, I am calling my neuro Monday to have them schedule it.
I consider myself lucky.... I never became "disabled" physically, just the debilitating brain fog, fatigue and then my eyes went. All of that has disappeared. The tingling is distracting and causes worry, but it has never been accompanied by weakness, pain or loss of function. If abx is the cure - imagine treating every brand new MS patient and the disability would be a thing of the past. I'm sure you and David have both imagined that...
Years ago, before MRI - I probably would not have received any treatment. Just a wait and see thing. But because I had a great Dr. who diagnosed me early, and then was compelled to research it to death - I found the abx protocol online.
Like everyone, I am truly hoping this is THE cure. I certainly am not following the predictions on the the standard MS sites - I've only gotten stronger, clearer, healthier. So I will continue to post my story in hopes that it helps someone else.... and after a few good years I may just need to shout it from the rooftops.
Will keep you posted.
THANK you for sharing the story of the other person. I am feeling so much better that I am not afraid of the MRI anymore, and the story helped. In fact, I am calling my neuro Monday to have them schedule it.
I consider myself lucky.... I never became "disabled" physically, just the debilitating brain fog, fatigue and then my eyes went. All of that has disappeared. The tingling is distracting and causes worry, but it has never been accompanied by weakness, pain or loss of function. If abx is the cure - imagine treating every brand new MS patient and the disability would be a thing of the past. I'm sure you and David have both imagined that...
Years ago, before MRI - I probably would not have received any treatment. Just a wait and see thing. But because I had a great Dr. who diagnosed me early, and then was compelled to research it to death - I found the abx protocol online.
Like everyone, I am truly hoping this is THE cure. I certainly am not following the predictions on the the standard MS sites - I've only gotten stronger, clearer, healthier. So I will continue to post my story in hopes that it helps someone else.... and after a few good years I may just need to shout it from the rooftops.
Will keep you posted.
I am the other person that Sarah mentioned above (thanks for sharing). I started ABX treatment 4 months ago and had two pseudoexcacerbations causing me to miss a week of work each time. My treatment did not follow the protocol as outlined. I started Doxy and a month later got on Flagyl and started Azith a month after that. The pseudoexcacerbations happened when I started Flagyl and again when starting Azith.
I think it is crucial that we warn others on starting this treatment right. I don't blame my neuro b/c he has no experience with this treatment. I will see him in two days and will discuss my treatment. I can't wait to get his reaction to me having a clean MRI after going through what I thought was a major excacerbation. For the short term, I have decided to wait a couple of months before resuming Flagyl pulses.
I think it is crucial that we warn others on starting this treatment right. I don't blame my neuro b/c he has no experience with this treatment. I will see him in two days and will discuss my treatment. I can't wait to get his reaction to me having a clean MRI after going through what I thought was a major excacerbation. For the short term, I have decided to wait a couple of months before resuming Flagyl pulses.
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SarahLonglands
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Xenova, I thought I was going mad for a few minutes, until I realised you had a name change! You are coming in very useful, thank you.
Sarah
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.
MRI results + new pulse
Well, the 1 year MRI was Friday Oct. 27.
They just called me with the results... 18 lesions.
One new *possibly* enhancing - they cannot tell me when it could have occurred, and it is not showing glaring enhancement. New lesion is a few millimeters in diameter.
The largest lesion has shrunk considerably.
No axonal loss present, where first MRI in 10/05 showed axonal loss.
My questions - which she is relaying to the radiologist and Neuro -
Is it possible the new lesion was present 8 months ago prior to my beginning the abx?
Was the axonal loss truly present in 2005 and it resolved?
Different radiologists read the 2 scans - so she is trying to have the Dr. who read this one, read the first one as he is the "Guru" of radiology.
The tingling comes and goes, I am walking with a friend 2-3 times a week for 30-45 minutes at a very fast pace with no problems at all. No other symptoms or difficulties. Very clear mind.
Pulse #6
Start: 2:30pm 10-29-06
So far felt fine until lunchtime today (22 hrs after first pill), then felt ill, but feel better now.
It seems if I don't eat on time the sick feeling is compounded - but food tastes like cardboard for the most part (makes me believe in medicinal marijuana) so eating is a chore.
Flagyl makes me VERY irritable and short tempered (Wiggy I was reading your thread that you were more irritable than usual)- especially when the ill feelings start, it is almost a panic feeling, and it makes me very tired.
Will update as this pulse goes on.
They just called me with the results... 18 lesions.
One new *possibly* enhancing - they cannot tell me when it could have occurred, and it is not showing glaring enhancement. New lesion is a few millimeters in diameter.
The largest lesion has shrunk considerably.
No axonal loss present, where first MRI in 10/05 showed axonal loss.
My questions - which she is relaying to the radiologist and Neuro -
Is it possible the new lesion was present 8 months ago prior to my beginning the abx?
Was the axonal loss truly present in 2005 and it resolved?
Different radiologists read the 2 scans - so she is trying to have the Dr. who read this one, read the first one as he is the "Guru" of radiology.
The tingling comes and goes, I am walking with a friend 2-3 times a week for 30-45 minutes at a very fast pace with no problems at all. No other symptoms or difficulties. Very clear mind.
Pulse #6
Start: 2:30pm 10-29-06
So far felt fine until lunchtime today (22 hrs after first pill), then felt ill, but feel better now.
It seems if I don't eat on time the sick feeling is compounded - but food tastes like cardboard for the most part (makes me believe in medicinal marijuana) so eating is a chore.
Flagyl makes me VERY irritable and short tempered (Wiggy I was reading your thread that you were more irritable than usual)- especially when the ill feelings start, it is almost a panic feeling, and it makes me very tired.
Will update as this pulse goes on.
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SarahLonglands
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How infuriating that you had two different radiologists read the two scans. You certainly could do with the "guru" reading them both. I managed to avoid this because our radiological "guru" read all of mine. In fact, he ordered all but the first because he was so intrigued. Now, it is very good news that the biggest lesion has shrunk considerably and the one new lesion could easily have happened in the period between the last scan and starting antibiotics, especially if it is not glaringly bright. It sounds a bit like one that was cut short in its tracks. Hmm, I can just see the thoughts going through some people's heads when they read me saying this! For this reason, I won't even mention axonal loss.
I think flagyl makes everyone irritable and short tempered. Also a bit more fatigued than usual. I suppose that may be because of not eating enough, because you are right about food tasting like cardboard. Much more garlic and spices than usual helps: hot chillies help no end. I eventually swapped to tinidazole because it is slightly more tolerable in this way, though I suppose that since I am now swapping my intermittent doses to every three months, I shouldn't complain about five days once every three months. I do, though.
Sarah
I think flagyl makes everyone irritable and short tempered. Also a bit more fatigued than usual. I suppose that may be because of not eating enough, because you are right about food tasting like cardboard. Much more garlic and spices than usual helps: hot chillies help no end. I eventually swapped to tinidazole because it is slightly more tolerable in this way, though I suppose that since I am now swapping my intermittent doses to every three months, I shouldn't complain about five days once every three months. I do, though.
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.
Update
I've been on the Doxy for almost a whole year - Azith almost a year, and Flagyl I am in the middle of pulse #9.
Feel OK this time, no lying in bed moaning yet haha
Seriously, what a difference though from the first ones... several of those I did spend laying in bed moaning - well maybe not actually moaning (although definitely for two of them)... but wanting to moan.
I went to work today, ran errands.
If the Flagyl itself was the thing causing my reaction - the reaction should be the same each time... not improving each time.
I'm tired when I am on a pulse, and grumpier - but I do not have that "poisoned" or panic feeling I was getting. Doxy and Azith do not bother me unless I don't eat enough when I take them. Flagyl doesn't seem to matter if I eat or not.
One thing - the tingling that started in Nov 2005 (a month after diagnosis) comes and goes... but for the last 2 months, it is 100% gone except for when I pulse. 24-48 hrs after I start the pulse, the tingling starts - more pronounced in my left foot, but at night will wake me with full body tingling.
In the past - the tingling was unbelievably strong, felt like I was filled with stardust or pop rocks! But this time, and last - it is very mild - barely noticeable. Within 3 days of the pulse ending, the tingling disappears again.
Coincidence? Or why would the Flagyl start the tingling?
Anyway - other than that I remain symptom free, fully physically normal.
I ordered new meds, so enough Doxy and Flagyl for the next year, Azith is the only thing I need to go to the pharmacy for each month.
I have been really terrible about taking my supplements - they were causing so much nausea (I was taking ALOT of things) I just needed a break, and that break has stretched into a couple of months
Need to start back up, maybe ease into it - and take the fish oil again.
Well, off to relax a bit - the pulse is much easier if I decrease my activity during it.
Feel OK this time, no lying in bed moaning yet haha
Seriously, what a difference though from the first ones... several of those I did spend laying in bed moaning - well maybe not actually moaning (although definitely for two of them)... but wanting to moan.
I went to work today, ran errands.
If the Flagyl itself was the thing causing my reaction - the reaction should be the same each time... not improving each time.
I'm tired when I am on a pulse, and grumpier - but I do not have that "poisoned" or panic feeling I was getting. Doxy and Azith do not bother me unless I don't eat enough when I take them. Flagyl doesn't seem to matter if I eat or not.
One thing - the tingling that started in Nov 2005 (a month after diagnosis) comes and goes... but for the last 2 months, it is 100% gone except for when I pulse. 24-48 hrs after I start the pulse, the tingling starts - more pronounced in my left foot, but at night will wake me with full body tingling.
In the past - the tingling was unbelievably strong, felt like I was filled with stardust or pop rocks! But this time, and last - it is very mild - barely noticeable. Within 3 days of the pulse ending, the tingling disappears again.
Coincidence? Or why would the Flagyl start the tingling?
Anyway - other than that I remain symptom free, fully physically normal.
I ordered new meds, so enough Doxy and Flagyl for the next year, Azith is the only thing I need to go to the pharmacy for each month.
I have been really terrible about taking my supplements - they were causing so much nausea (I was taking ALOT of things) I just needed a break, and that break has stretched into a couple of months
Need to start back up, maybe ease into it - and take the fish oil again.
Well, off to relax a bit - the pulse is much easier if I decrease my activity during it.
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Katman
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Mamahawk
It has been a very long time since I visited here, but when I received notification and read it, I had to stop and offer my congratulations. Your progress is thrilling and I am certain it will continue. I am now in my 29th month of antibiotics and in the middle of pulse #38. At the beginning it was sometimes very, very hard and I, like you, spent some days not contributing anything to life (understatement). However, there are hours now, especially in the recovery times, when I am almost normal both physically and mentally - I even went up on the metal barn roof to take care of some rust holes. Stay with it. It is all well worth it. And do something about your supplements - your body needs them to work with.
Rica
It has been a very long time since I visited here, but when I received notification and read it, I had to stop and offer my congratulations. Your progress is thrilling and I am certain it will continue. I am now in my 29th month of antibiotics and in the middle of pulse #38. At the beginning it was sometimes very, very hard and I, like you, spent some days not contributing anything to life (understatement). However, there are hours now, especially in the recovery times, when I am almost normal both physically and mentally - I even went up on the metal barn roof to take care of some rust holes. Stay with it. It is all well worth it. And do something about your supplements - your body needs them to work with.
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.