Crohn's Disease Forum » Treatment » Another "I started Anti-MAP" thread


09-09-2018, 05:11 PM   #1
KarlB
 
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Another "I started Anti-MAP" thread

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?
09-11-2018, 03:30 AM   #2
KarlB
 
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Day 6: The D appears to be subsiding. It has moved one point towards the more solid end of the bristol stool scale. Still very loose but not as bad as it has been the past two days.

I had the same reaction when I was put on metronidazole + ceftriaxone + penicillin around two months ago when I had a flare along with tonsilitis. I seem to be quite sensitive to antibiotics giving me D.

I've lost about 1kg over the last week but I'm hoping I'll put that back on when the D subsides. I'm on the borderline of being underweight due to malabsorption over the last 9 months. I'll bring it up with my doctor if it doesn't resolve itself.

I slept for 9.5 hours last night and still felt tired when I got up.

I was prepared for it to be rough to begin with based on the other stories I've read.

I'll be having a blood test tomorrow to check my liver, kidneys, inflammation markers and full blood count.

IrishGal: did you lose any weight when you first started?
09-11-2018, 06:48 PM   #3
OleJ
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Hi Karl B
Thank you for updating us here on your progress. Did you take any MAP infection tests prior to starting? Something to then do after s period of time to see if infection numbers are down.
It will be interesting to follow how you respond. I hope for the best.
Cheers
09-11-2018, 07:06 PM   #4
irishgal
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Yes - I lost weight initially. I could barely eat anything, but didn't vomit. Ginger helped. It took abiut 2 weeks before I started to feel “good” then I ate everything I could get my hands on and gained 10 pounds in 4 weeks. I was severely underweight to start with.

I also see you are on Levo. Be very careful with that one. The Levo made me “spacey” like I was out of it. Also, I think it contributed a lot to the nausea, though for me I think the main culprit was the clarithro. Worse, it gave me what I called “80 year old knees” where I could barely bend down to the floor, and then couldn't get up once I got there! I thought it was CD joint pain, but I went off the levo and it went away within a couple of days. Damage can be permanent, and it took 6 months for it to get bad enough for me to quit, but just be really careful of any joint pain stuff. You can always sub levo out for clofaz.
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Currently on: Anti-MAP therapy and loving life! Full remission since Jan 2015. Clarithromycin, rifampin and low dose naltrexone. (Levofloxicin had too many side effects so discontinued after 5 months.) Resources on human MAP and Crohn's here: HumanPara.org.

Past (failed) Treatments: Remicade, Humira, Prednisone, Pentasa, Azulfadine, Lialda, No gluten/dairy/sugar/coffee or processed food in general. Flagyl worked but not long term.
09-12-2018, 03:23 AM   #5
KarlB
 
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I didn't have any MAP test before I started as it's very likely I'm already infected. From what I've heard the MAP tests are expensive and take a while to come back, and only give a positive or negative rather than a quantitative result, which is not that interesting for me. If I could get a quantitative result and track it going down over time then I'd be more interested. Some of the more recent work (unpublished) from Professor Herman-Taylor with his new diagnostic test has shown 100% of Crohn's patients have MAP in their gut biopsies.

I am on Levo for now as it is apparently quite hard to get hold of Clofaz, due to it being an "Orphan drug".

Day 7: My bowel movements are firmer than yesterday but still loose. I had a short phone conversation with my Doctor who suggested we cut the Levo in half for now. Even though it seems to be getting better, he was still concerned about the D, of which Levo is the most likely culprit. I've also been having some palpitations which could be dehydration but could also be the Levo. Both Levo and Clarithromycin prolong the Q-T interval and should be taken at least 4 hours apart to minimise risk of compounding effects on the Q-T interval.

I was also scheduled to go up to the full dose of rifampin today but due to the concerns above we are keeping that at half for now.

Resting heart rate appears to be on it's way back down. We may have had a minor Jarisch–Herxheimer reaction here Die MAP die.
09-14-2018, 06:26 AM   #6
KarlB
 
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Day 9: The D has lasted 5 days now. It is definitely the antibiotics as my stools were not like this before I started. I am feeling quite run down.
I am not sure if I can reasonably go to a lower dose of the antibiotics without risking resistance. I'm only on a half dose of all of them.
I did read that someone pulsed a week on and week off of the antibiotics (I think that was irishgal), I think I will try a few days off for now.
I am not sure if my doctor will want me to start Aza soon if things continue this way.
Any advice anyone?
Anything I can do for the D?

I am taking probiotics but I'm not sure if they will be useless, since shouldn't the antibiotics just kill them all anyway?
09-14-2018, 03:48 PM   #7
irishgal
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I pulse one week on, one off, but only now - after establishing 3 years of great remission and healing. I don't think I'd do that on day 9. The D was the last thing to go away for me. It took months. Like 9 months! But it gradually became less and less over time. At day 9, that's really not enough time for much to happen. I'd suggest you talk to your doc and work with him/her, but I don't know if I'd give up so soon unless you really can't tolerate the meds or you have some other dangerous condition like CDiff. But i'm not a doc! so I'd talk to your doc before deciding what to do with the meds on your own. Wish you were feeling better!
09-15-2018, 02:10 AM   #8
Crohn2357
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Anything I can do for the D?
Drink more water, and consume more salt and sugar. Go for a stool culture.
09-15-2018, 06:04 AM   #9
KarlB
 
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I don't think I'd do that on day 9. The D was the last thing to go away for me. It took months. Like 9 months! But it gradually became less and less over time.
Ok, thanks for the advice. It is reassuring that you experienced the same thing. I was expecting the D to only last a few days.
I am going back on now. I must have only spent 24 hours off the antibiotics, probably less than that, but the D did noticeably improve in that time, which is also reassuring.
There has also been no blood in the D for about the last 5 days in a row, which is very good for me, I've had issues with spotting blood on and off for several months.
09-15-2018, 06:23 AM   #10
KarlB
 
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The following thought has been bugging me for several weeks now considering the long duration of Anti-MAP therapy.
Read this link for a background: https://academic.oup.com/femsle/arti...7/2/133/501025

Consider the following points:
  • Butyrate is produced by friendly bacteria in the colon
  • Butyrate is essential for a healthy colon, due to it's anti-inflammatory properties and other benefits
  • Antibiotics probably kill most of the beneficial bacteria in the gut
  • This is probably what causes antibiotic associated diarrhoea
  • Friendly gut bacteria are needed not only for butyrate production but also a whole range of other benefits to the body

So it really confuses me how people even survive on extended courses of antibiotics, because of the totally disastrous effect it likely has on their friendly gut bacteria.

So that leads me to think that one or more of the following points must be true:
  1. Antibiotics don't actually kill ALL friendly gut bacteria (due to their targeted nature)
  2. The friendly gut bacteria are decimated by the antibiotics to begin with, but develop a resistance over time
  3. Friendly gut bacteria aren't actually that important

Personally I think a combination of 1 and 2 is probably true.
It would be interesting to hear the opinions of other members on this.
09-15-2018, 06:58 AM   #11
irishgal
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Totally agree with #1. And also, CD patients many times have dysbiosis, and their gut bacteria is so messed up it's doing more harm than good. I think ultimately, we are just scratching the surface of the gut biome research, and we really don't know exactly what's in there, how it interrelates, and what it does during disease states or the effect of antibiotics on it.

In the future, we may look back with this knowledge and wish we had done something differently, or have a better understanding of why something worked. But for now, I wasn't even going to live that long to see that research if I didn't do something about my CD, so I took the risk - with the full knowledge that AMAT was a bit of an unknown quantity. I minimize my risk as best I can by working closely with my doctor and getting regular blood work like liver function tests. Everyone needs to do this risk/reward assessment for themselves, and I'm hoping I will live long enough to see a cure, and that it will still be available for me after years of AMAT.
09-15-2018, 11:36 AM   #12
KarlB
 
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My resting heart rate over the last 4 months. The brown line is raw values, green is moving average.
Notice the spike when starting Anti-MAP. What happen here guys?
Attached Images
File Type: png RHR.PNG (87.2 KB, 52 views)
09-20-2018, 03:04 PM   #13
KarlB
 
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Day 15: Blood results have come back from a test I had last week.
Liver function is completely fine. So my doc has said I'm safe to go up to the full doses of the antibiotics. LETS KILL MAP

CRP was 14.9 which is slightly lower than usual for me, it has been 20-30 for many many months.

Vitamin B12 and D levels were both very good (well yeah but that is only because I supplement them massively. I supplement vitamin D right up to the tolerable upper intake level of 10,000 IU per day.)

Stools are the consistency of yoghurt, which is better than last week when they were basically water. The little pentasa granules like to show themselves as well

There is occasional blood in the stools of about half a teaspoon once every few days, but it has been that way for months.

My weight is staying stable but not really very healthy at a BMI of 18.3 and body fat of 11%.

Stomach pain is about 1/10 so basically hardly noticeable.

Well at least I am not deteriorating.
09-30-2018, 02:07 PM   #14
OleJ
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Karl, thanks for keeping us posted. Please keep us informed about how it goes!
09-30-2018, 02:41 PM   #15
KarlB
 
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Well I am nearly at four weeks now and starting to see an improvement.
My stools are about one point on the bristol stool scale away from being normal, and no blood in them for around a week.
Beginning to put on weight but only slowly.
My stomach pain has also gone.

I have just found out that my local hospital has approved me for infliximab and azathioprine (funded).
I am paying for the anti-MAP from a private doctor, so free to carry that on if I wish.
Dr. Borody has stated that in his opinion the ideal treatment is infliximab + anti-MAP at the same time.
Based on this, and several studies I have read I am inclined to have both, at least for some amount of time anyway. The treatments combined will hit the MAP harder than just anti-MAP alone.
Does anyone have any thoughts on this?
09-30-2018, 04:15 PM   #16
OleJ
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Thanks for the update Karl. I am glad to hear you are getting better and do not experience adverse side effects.

These days I am reading up on the calprotectin (FC) marker - since it so well established as a precise indication of IBD. The reason I say this is that a very recent study I just read concludes that AZA-type drugs have been found to lower FC levels in patients.
Add to that a study by Michael Collins et. al. that found AZA inhibits MAP growth in-vitro, and the case for opening another front in the MAP war seems to be made, at least based on these sources.
FC has bacteriostatic and fungistatic properties, that arise from its ability to sequester manganese and zinc (this knowledge stems from in vitro studies). So all in all we can speculate that MAP causes FC levels to rise as the body tries to get rid of the infection. When MAP is attacked with effective drugs like AMAT, AZA, and MTX, FC levels go down.
When I presented these studies to my GI though, he shrugged and said it is not something they consider and that in vitro studies (outside the body) are not useful as a basis for practice. So see this as some interesting observations i'd like to share rather than treatment advice.
10-01-2018, 10:49 AM   #17
Scipio
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.

These days I am reading up on the calprotectin (FC) marker - since it so well established as a precise indication of IBD.
FCP is not a precise indication of IBD so much as it is a good (but not perfect) indicator of inflammation in the gut. And there are other causes of inflammation in the gut beyond IBD - celiac disease and colon cancer for examples. FCP can also be elevated for these and other inflammatory conditions.
10-03-2018, 08:23 AM   #18
KarlB
 
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Well I have decided to go ahead with the infliximab and am having my first infusion tomorrow.

When I started this journey, I really wanted to have anti-MAP antibiotics by themselves, and no other treatment. Partly because I wanted to show to the world what my response would be, and do my part in giving some more evidence to the MAP theory. I wanted to be able to say "Hey look, I only had anti-MAP, and I got better".

I know that if I have anti-MAP antibiotics + infliximab then a lot of people could say "well you got better because of the infliximab" and just dismiss the MAP theory. I know this will be what a lot of doctors I see will say.

But I do believe based on my research that anti-MAP antibiotics + infliximab should be more effective than either treatment alone, and I have to do whatever I believe is best for my health, so I've chosen to have both.

My consultant wanted a baseline calprotectin test, before starting the infliximab, which I've sent off today, so at least I will know from that the effect of anti-MAP after a month and a half.
10-03-2018, 10:47 AM   #19
OleJ
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KarlB,
Once again thank you for the update. I know of the urge to be rigorous and do one thing at a time, but with our disease sometimes you just gotta throw all you got at it to arrest it. I hope your health will improve on remicade+amat - thats what is most important.

FCP is not a precise indication of IBD so much as it is a good (but not perfect) indicator of inflammation in the gut. And there are other causes of inflammation in the gut beyond IBD - celiac disease and colon cancer for examples. FCP can also be elevated for these and other inflammatory conditions.
Scipio- I am aware that consensus is FC "just means inflammation", but I think it is worth noting that in practice high values over 500 to 600 μg/mg are extremely predictive of IBD - or food infections. On the contrary, one study from 2012 states (by refs) that "in several important gastrointestinal disorders, such as small bowel bacterial overgrowth, celiac disease, or food lactose intolerance, fecal calprotectin levels will be normal"

Hence the interesting correlation to the fact that FC exhibits bacteriostatic and fungistatic effects.
10-10-2018, 10:34 AM   #20
KarlB
 
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Well I had my first infliximab infusion 6 days ago now but before I speak about that I'll go back a bit before it.

I had a calprotectin test the day before the first infusion which I've just got the result of today: 1056 mg/kg. So still pretty high even after 6 weeks on anti-map antibiotics, but I don't know if that is due to antibiotic induced colitis inflammation or just general crohn's inflammation.

After having the infliximab infusion it took a few days to notice any difference but my bowel movements are now becoming more solid without a doubt. My energy levels are also improving and there is a nice big dip forming in the graph of my resting heart rate.

I had some bloods sent off today which includes CRP, very interested to know what the result of that will be.

I'd also be very interested to know what my calprotectin level is now, I am guessing it would be much lower. Unfortunately I don't think I could convince my doctor to give me another calprotectin test after only a week - I would love to measure it every week just from a research perspective. I've looked into getting it tested privately but the cheapest I've found is £99 per test.
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