This Is MS Multiple Sclerosis Community: Knowledge & Support

After much research and deliberating I have decided to proceed with the antibiotic protocol known as the Vanderbilt protocol. I started with the first antibiotic last Wednesday, January 9th 2008. I will post occasionally on my symptoms, side effects, etc. I started with rifampin twice a day, will add azithromycin next Wenesday and then will do a 10 day pulse of flagyl out of 30 days.

Currently my symptoms include some tingling in my left hand and foot, slight tremor in right hand, vision is okay during the day but need my glasses with prisms at night when my eyes are tired (not needed every night), some dizziness (a swimmy headed feeling), slight nystagmus in the right eye, balance is pretty good but waver on occasion, some stiffness in legs if sitting for an extended period, left foot hurts often. These are some of my current symptoms. Others come and go.

My first week on rifampin I had body aches, increased tingling and overall just didn't feel that great. Aches left after first day or two, tingling decreased to the amount it is now (I notice it is there when I think about it but it is not bad), and overall I feel better. That may very well change after I start the next antbiotic.

I have increased my vitamin D to 5000 IU/day, B12 injections currently every 2 weeks but will change to monthly soon, DHA 500 mg/day,
NAC 1800 mg/day, and will be stopping LDN soon.

That's all I can think of now. I will add more as I go along.

Lori

Lori,
This is exciting and wonderful!!!
WOW!!!
Kim and I are also writing down changes in symptoms. It's terrific that you write this stuff down. I can see that it's easy to forget what changed exactly when - hopefully a lot happens and it's too much to keep track of!

One idea I'm suggesting to Kim (It's her blog so I'm not imposing), is to have a rating for how something feels. Like:

Left Hand tingling - 5.0
Right Hand Tremor - 6.5
Dizziness - 4.0
etc....

Then when you have progress, reflect a new rating for that thing. It's just an idea. maybe a bad one. I still don't have Kim on it. I'm very excited that you've decided to start a thread about this. B-12 Injections sound ouchy - why not do the sublingual ones?
Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Lori, I agree with keeping a journal. Katman and I were discussing this last night and agreed how easy it is to forget or minimize our original symptoms. When I said, "Sometimes, I question whether it was as bad as I thought", she interrupted and said, "Yes, it was!" And she was right. (Awhile back, DW remarked on a 'good forgettery' and it was most appropriate.)

Congrats, of course, on getting started. May it go easily for you!

_________________
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

Excellent, Lori, and how I wish I had kept a log rather than getting annoyed and deleting the whole lot!

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.

Lori,
Good to see you here, jounals help you see what was going on before because you will forget. Best of luck!

Thanks everyone for your comments. Ken, I think the reason for the B12 injections as opposed to sublingual is that the delivery is better with the injections. I don't mind doing it and if it works better I am ok wth that. I do see a difference in my energy with it.

Nothing new to report teoday except that I had the WORST headache I have ever had yesterday. I've never had a migraine but that's what I think it may have been. The weather may have been a factor with gray skies and getting ready to rain. But it is the same today and my headache is gone. So it makes me think that it was actually the antbiotic. Or it could have been just a headache! Whatever, at least it is gone today.

Lori

I can't imagine any time that either one of us would opt for a needle, wow. You must be very tough. I can't respond to the headache. Kim get's them when she don't eat, but I think that's a normal sort of human thing. I get them if I go without caffine. Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Lori, I found that I definitely got an energy shot when I had injections, but it didn't last until the next one. That's why I opted for the oral route taken every day. I wouldn't have fancied an injection more than once a week.

As for headaches, I never get or got them except when a thunderstorm is imminent. The luck of the draw, I suppose: David gets then more than I do.

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.

I am starting flagyl on Thursday so thought I should update before then. Originally I was to take flagyl for 10 consecutive days in a month but the doctor at Vanderbilt told me to go for 7 days instead for a couple of months to see how I tolerate it and then we will see if we need to adjust it.

So.......

I am taking rifampin twice a day and azithromycin MWF. I will continue this once I start the flagyl also.

Since I started this the good days have definitely outweighed the bad.

I would say the dizzyness is somewhat improved. Balance is good and I think I am steadier than I was when I last posted. I know I have an increase in energy because I have been able to work out pretty much every day without difficulty and I am not wiped out after I am done. I think it helps in so many ways to work out. My balance is better, my mental health is better, my energy level is better. It is a domino effect.

I have had some body aches but can't say it is when I start new antbiotic. Just one day I feel achy and the next day I don't! Not bad like the flu, just overall achiness.

I have had 2 terrific headaches and I do attribute that to the antibiotics. I was never prone to bad headaches before and these ones were doozies! Also sinus pain accompanied both times. I believe the bacteria is being killed.

I also have had foot pain, which actually started this past summer. It improved over the next few months but returned last month for no apparent reason. Again, dying bugs I think! From what I understand it is not uncommon for pain to return to a more recent injury site and that is what I am experiencing.

My blood pressure has gone up and also heart rate. I have always had blood pressure on the low end of normal and slow heart rate so this is also new. Also not surprising to have this happen from what I have read. It is not so high as I need medication. It is just high for me. Hopefully working out will help with this.

Vision I feel is slightly improved. Have needed my prism glasses at night even less than a month ago. I had an opthamologist appointmentand my optic nerve is healthy. So that is one less thing I have to worry about right now.

Thus far I am very pleased with how this is going. There are enough reactions for me to feel that something is happening but the reactions aren't so severe as to limit me too much. I can only hope that it will continue like this (or at least close to) and is also doing what it is supposed to! I am very positive about my experience so far. Not that it is all fun and games, that's for sure!

Lori

Lori, This is so good to hear; everyone starts out with apprehension and the end result is usually far less grief than anticipated. Your assessment is perfect: enough reaction to know there IS a reaction, but not enough to debilitate you. Interesting how several people are reporting that same vision/prism improvement! Very cool.

_________________
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

I just finished my first flagyl pulse of 7 days last night (Thursday). So I have been through a complete loop of the antibiotics.

My observations thus far:

During the flagyl pulse I experience increased tiredness. Not as bad as it has once been but more than recently. I understand that this is common to experience.

Sometimes I have some slight dizzyness. This is definitely improved from before I started abx therapy.

Vision was "off" once night this past week. Not double vision, just focus. This is also an improvement because it was not enough that my prism glasses corrected it.

Foot pain is improving.

Body aches come and go.

Headache-this is the biggie! Finished last flagyl last night and during the night I could feel a headache coming on. By this morning it felt like an ice pick through my temple and sinus cavity. I had not been consistent with taking things to help with die-off (I know, I'm bad!) so this morning I took a glucose tablet and then later drank a glass of Emergen C. Headache is now 99% gone. I am sure this is a result of the antibiotics doing their thing because I never was prone to headaches before, and the above products helped alleviate the pain. I believe it is from the azithro, not the flagyl as it seems to come on the day after I take an azithromycin. Not every time but enough that I can see a pattern.

So that's it for this time. I continue with rifampin twice daily and azthro MWF until the next flagyl in 21 days.

Lori

I just finished my first flagyl pulse of 7 days last night (Thursday). So I have been through a complete loop of the antibiotics.

My observations thus far:

During the flagyl pulse I experience increased tiredness. Not as bad as it has once been but more than recently. I understand that this is common to experience.

Sometimes I have some slight dizzyness. This is definitely improved from before I started abx therapy.

Vision was "off" once night this past week. Not double vision, just focus. This is also an improvement because it was not enough that my prism glasses corrected it.

Foot pain is improving.

Body aches come and go.

Headache-this is the biggie! Finished last flagyl last night and during the night I could feel a headache coming on. By this morning it felt like an ice pick through my temple and sinus cavity. I had not been consistent with taking things to help with die-off (I know, I'm bad!) so this morning I took a glucose tablet and then later drank a glass of Emergen C. Headache is now 99% gone. I am sure this is a result of the antibiotics doing their thing because I never was prone to headaches before, and the above products helped alleviate the pain. I believe it is from the azithro, not the flagyl as it seems to come on the day after I take an azithromycin. Not every time but enough that I can see a pattern.

So that's it for this time. I continue with rifampin twice daily and azthro MWF until the next flagyl in 21 days.

Lori

I think that one's first Flagyl pulse ought to qualify as some form of hazing. Welcome to the Society!

Kim's noticing little improvements these few days following the pulse. There are a handful of improvements she's experiencing. Then again, she's getting frustrated with wanting immediate healing.

Sounds like you're on track and finding little improvements too! Awesome! The headache thing, wow, sound's annoying. Glad it's gone and you're moving forward.

Did you find Calcium Pyruvate yet? We found it at the Vitamin Shoppe. We had to special order it. Got it yesterday. Hooray!!!

HAPPY VALENTINE"S DAY!!!!
Ken

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />

Finished my second pulse of flagyl yesterday. Have to say I am glad it is over. Started out fine for the first 2 days, same energy etc. Then the 3rd day it hit me. Again, it is a twisted feeling to be glad to feel bad! My energy level plummeted. I had to get out the Provigil, which I had not needed, and even that didn't really cut it. I started each day out okay but by mid-morning I was really tired and couldn't shake it no matter what.

As I look back on my notes of the week, this is what I experienced:

#1 issue this time was fatigue. I think it was the last time also

Dizziness continued off and on.

Foot pain worsened. Had a massage yesterday and it is improved by about 80%. I even bought those detox foot pads to see if they do anything. May be that they do nothing but I wanted to try them.

Vision seemed worse in the beginning of the pulse but had less problems in the latter part of the week.

Overall just didn't feel well. Didn't really want to do much in the afternoons (not like me).

So again, the reaction is one that is not completely overwhelming but just enough to know that something is going on.

After I get some blood work done to check liver function I think I am going to restart LDN. I felt like it was doing something when I took it before but was told to stop so that I could see how antibiotics were doing and how I reacted to them. Also, will start pyruvate after blood work.

That's it for now!
Lori

Lori,
Sounds like you are managing quite well - all normal reactions. I have never heard of detox foot pads but I think I need these - let me know if they work. I think massage helps esp. after a lot of flagyl.
Good luck with blood work - as long as you're taking supplements I think you should be fine. I have had liver func. monthly for over 1 & 1/2 years and it has been ok to date -