I have been on Anti-MAP for a few days now and finally managed to convince myself to make a post about it. I've been taking notes which I'll put in chronological order below. I want to say thanks to IrishGal for giving me some advice on this over the last few days through PMs.
14 days before starting Anti-Map:
I have eventually been able to find a doctor who has the opinion that the Anti-Map theory is "unproven but worth exploring". I've been offered combination therapy of Azathioprine and Adalimumab, but really wanted to try Anti-MAP first.
He strongly advised that Anti-MAP is still very unproven and off label for this purpose, and that it should not be a replacement for Aza + Ada. He is happy for me to start Anti-Map now, and then review as we go. I've agreed to have the Aza + Ada if things don't work out on the Anti-MAP. I wouldn't recommend anyone to decline a thoroughly tested medication in place of an unproven one, but this is more of a "see how we go" approach first.
Anti-MAP along with the conventional therapy is a possibility for me in the future. We spoke about something that Dr. Borody has mentioned in the past, which is that combining anti-MAP with anti-TNF could be particularly effective. Since the anti-TNF induces apoptosis of macrophages where the MAP is hiding, so the macrophages then break open and release the MAP, which gives the antibiotics the chance to kill the bacteria more effectively.
I'll be getting regular blood tests but have also ordered some urinalysis strips, which check plenty of indicators in your urine, including for kidney and liver damage. I know these are far less accurate than a blood test, but it will give me extra peace of mind, since I can check more often and at my own convenience.
Day 1:
I tried a small dose of each antibiotic spaced two hours apart, I want to be very careful in case of any allergic reaction, a few members of my family are strongly allergic to certain antibiotics, but I have no known allergies yet.
I had 500mg of clarithromycin, 150mg rifampin and 250mg of levofloxacin.
I didn't notice any side effects apart from slightly discoloured urine due to the rifampin, which I was expecting from what I have read, the drug itself is a very strong orange dye.
Day 2:
I am taking 1000mg clarithro, 300mg of rifampin and 250mg levo per day now, spaced throughout the day. After half an hour of taking the rifampin I felt quite nauseous and had no appetite. Luckily I didn't end up vomiting. The nausea was really helped by having a cup of lemon and ginger tea.
My urine is now quite a dark sunset orange, very similar looking to the fizzy drink Irn Bru. I'm worried I won't be able to get an accurate reading from the urinalysis strips as they rely on a colour reading.
The dark coloured urine lasted most of the day but began to return to normal by the evening. I did a test with a urinalysis strip which was completely normal.
In one week I will be going up to a higher dose of the rifampin and levo, so my total per day will be 600mg of rifampin and 500mg of levo.
Day 3:
The rifampin associated nausea is less severe today. No other noticeable side effects other than the orange urine.
Day 4: Today I am having very runny stools which I am assuming is antibiotic associated diarrhoea. I don't think it is Crohn's diarrhoea because I have no stomach pain and don't feel run down like I do when I'm flaring badly.
This makes me more confident that the antibiotics are having some effect on my body. It is not a positive effect but I know they are doing something at least. I am hoping the diarrhoea should subside after a few days and then I will begin to feel better.
There is absolutely no smell to the diarrhoea whatsoever which I assume is due to the antibiotics. I also have no flatulence anymore after starting Anti-MAP.
Urinalysis strips all coming back normal, so no detectable levels of kidney or liver damage in my urine at least. I will have a blood test in a few days.
No weight gain or loss measurable by my scales as of yet.
Slightly elevated resting heart rate but I'm guessing this is a mild herxheimer-type reaction.
Did any others having Anti-MAP experience antibiotic associated diarrhoea?
14 days before starting Anti-Map:
I have eventually been able to find a doctor who has the opinion that the Anti-Map theory is "unproven but worth exploring". I've been offered combination therapy of Azathioprine and Adalimumab, but really wanted to try Anti-MAP first.
He strongly advised that Anti-MAP is still very unproven and off label for this purpose, and that it should not be a replacement for Aza + Ada. He is happy for me to start Anti-Map now, and then review as we go. I've agreed to have the Aza + Ada if things don't work out on the Anti-MAP. I wouldn't recommend anyone to decline a thoroughly tested medication in place of an unproven one, but this is more of a "see how we go" approach first.
Anti-MAP along with the conventional therapy is a possibility for me in the future. We spoke about something that Dr. Borody has mentioned in the past, which is that combining anti-MAP with anti-TNF could be particularly effective. Since the anti-TNF induces apoptosis of macrophages where the MAP is hiding, so the macrophages then break open and release the MAP, which gives the antibiotics the chance to kill the bacteria more effectively.
I'll be getting regular blood tests but have also ordered some urinalysis strips, which check plenty of indicators in your urine, including for kidney and liver damage. I know these are far less accurate than a blood test, but it will give me extra peace of mind, since I can check more often and at my own convenience.
Day 1:
I tried a small dose of each antibiotic spaced two hours apart, I want to be very careful in case of any allergic reaction, a few members of my family are strongly allergic to certain antibiotics, but I have no known allergies yet.
I had 500mg of clarithromycin, 150mg rifampin and 250mg of levofloxacin.
I didn't notice any side effects apart from slightly discoloured urine due to the rifampin, which I was expecting from what I have read, the drug itself is a very strong orange dye.
Day 2:
I am taking 1000mg clarithro, 300mg of rifampin and 250mg levo per day now, spaced throughout the day. After half an hour of taking the rifampin I felt quite nauseous and had no appetite. Luckily I didn't end up vomiting. The nausea was really helped by having a cup of lemon and ginger tea.
My urine is now quite a dark sunset orange, very similar looking to the fizzy drink Irn Bru. I'm worried I won't be able to get an accurate reading from the urinalysis strips as they rely on a colour reading.
The dark coloured urine lasted most of the day but began to return to normal by the evening. I did a test with a urinalysis strip which was completely normal.
In one week I will be going up to a higher dose of the rifampin and levo, so my total per day will be 600mg of rifampin and 500mg of levo.
Day 3:
The rifampin associated nausea is less severe today. No other noticeable side effects other than the orange urine.
Day 4: Today I am having very runny stools which I am assuming is antibiotic associated diarrhoea. I don't think it is Crohn's diarrhoea because I have no stomach pain and don't feel run down like I do when I'm flaring badly.
This makes me more confident that the antibiotics are having some effect on my body. It is not a positive effect but I know they are doing something at least. I am hoping the diarrhoea should subside after a few days and then I will begin to feel better.
There is absolutely no smell to the diarrhoea whatsoever which I assume is due to the antibiotics. I also have no flatulence anymore after starting Anti-MAP.
Urinalysis strips all coming back normal, so no detectable levels of kidney or liver damage in my urine at least. I will have a blood test in a few days.
No weight gain or loss measurable by my scales as of yet.
Slightly elevated resting heart rate but I'm guessing this is a mild herxheimer-type reaction.
Did any others having Anti-MAP experience antibiotic associated diarrhoea?