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11-15-2017, 07:05 PM   #61
irishgal
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How do people who are using (or considering to use) the anti-map therapy find clofazimine?

This is an important issue.
If you are in the US, you can get a script from your doctor and fill it at an online pharmacy in Canada using Pharmacy Checker. That's the easiest way, though I know a couple of people who get it from India and Switzerland. Not sure about other countries. I know it's very difficult to get if you live in Canada.
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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.
11-22-2017, 05:54 AM   #62
OleJ
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To Conner:
How are you doing? Good I hope!. If you would consider giving us a heads up I'd be greatful. Cheers
11-27-2017, 09:22 AM   #63
Crohn2357
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Do some patients use flagyl as part of the anti-map drug protocol?
11-27-2017, 10:55 AM   #64
Crohn2357
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I am adding two links to this support group:

Anti-MAP treatment for Crohn's Disease

An Interview with Dr. T.J. Borody

Note that these are undated articles, and are most probably not new.
11-29-2017, 10:36 AM   #65
Crohn2357
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If you are in the US, you can get a script from your doctor and fill it at an online pharmacy in Canada using Pharmacy Checker. That's the easiest way, though I know a couple of people who get it from India and Switzerland. Not sure about other countries. I know it's very difficult to get if you live in Canada.
This video shows the adress of a pharmacy in Switzerland which is said to have clofazimine. It can be seen at 14.25.
11-29-2017, 11:17 AM   #66
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Crohn’s Disease & MAP Frequently Asked Questions

Mycobacterium Avium subspecies Paratuberculosis (MAP)

Last edited by Crohn2357; 11-29-2017 at 12:16 PM.
11-30-2017, 05:23 PM   #67
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To Conner:
How are you doing? Good I hope!. If you would consider giving us a heads up I'd be greatful. Cheers
I'm 1 month in and all bleeding has stopped. Stools became formed so quickly that they are actually causing bleeding, but the bleeding is not related to UC. CRP is in normal range now. I can finally start to get off prednisone.

Because I stopped taking clofazimine, I am looking into a 3rd drug to replace it. I may use tinidazole, but I'm not sure yet. Even at low doses, I don't see how I could tolerate an azole drug for months. They're really hard on the body.

There was a time a couple weeks back when I felt like my body was on toxic overload and I didn't know how to deal with it. My liver and kidneys felt sluggish. Then one day I was at the grocery store and I saw beet sauerkraut, unpasteurized, and I found myself craving it. I went home and literally ate half the jar, which is insanely fibrous for someone with UC.

Within a couple days my body aches and pains, skin issues, sluggishness and fatigue all died down. So now I have a bit every day. I think it's the glutathione in beets that must be helping. Glutathione scavenges the body for reactive oxygen species, which is what AMAT releases to kill organisms.

Over all I am happy that I started AMAT and I seem to be tolerating it much better now. But man, the first couple of weeks were hell!
12-01-2017, 11:08 AM   #68
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Conner, I'm so glad to hear you are past the first rough week. Wish you smooth sailin' from now on

To recap my story: was in remission this spring, on medication (calprotectin <100, no symptoms). Got a MAP culture test done that came back positive, but with very low numbers of live bacteria. Got off dairy and cow's meat and tried to taper and stop medication. Got sick in september (calprotectin close to 300, diarrhea).

Latest news:
Sent of another blood sample for culturing a month ago while I was sick, before restarting medication - and it just came back positive, with significantly higher numbers of live bacterias present than the first test.
Food for thought...

Last edited by OleJ; 12-01-2017 at 11:24 AM.
12-01-2017, 03:08 PM   #69
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The numbers are always higher during a flare because that's when they're active and reproducing. They create biofilms and peptidoglycans which induce inflammatory responses in the body.

During periods when you're healthy and strong they will be dormant and in smaller numbers.
12-01-2017, 06:34 PM   #70
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here's the results of the two tests compared. It would be very interesting to hear what other's results are / was (staining bacteria, pct. at 7 and 30 days).

[EDIT: WOW this was my post number 100 ]


Last edited by OleJ; 12-02-2017 at 02:02 AM.
12-02-2017, 01:41 AM   #71
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That's a handy bar graph. I don't have something so visually laid out, though I guess when I get my second round of blood work cultured I will be able to draw comparisons.

You have way more large forms than I did in my test, but I have UC and you have CD. The highest I had was 6%. If MAP is the reason for my UC, then it's crazy that my body is reacting to such small numbers. However, it would, given how sensitive my immune system has always been.

Can I ask where you got your culture done, Ole J?
12-02-2017, 02:23 AM   #72
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The test was done by Otakato Pathways in New Zealand. Where did you get yours done? If you do a second test I'd be really interested in knowing your MAP levels trend. Maybe initial value can be different based on your UC diagnosis and immune system, but I am guessing there should be a decline in numbers if MAP is a causative agent.

In the conclusion of the test from may, they wrote:
The overall appearance is similar to that seen in Crohn's disease, where the patient is in remission or on prolonged therapy.

In the conclusion of the test from october, they wrote:
The overall appearance is similar to that seen in Crohn's disease where the patient may be on a sub-optimal therapy. There is some indication of growth suppression and no appreciable increase in ruptured forms.

The graphs are easy do draw in Excel if you know that program. I did it manually, filling cells with color to represent the bars.

Last edited by OleJ; 12-02-2017 at 02:39 AM.
12-02-2017, 06:03 AM   #73
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For patients who want to try (or learn more about) Anti-MAP therapy, Dr. Chamberlin says they "are building a private database of practitioners and will assist if possible".

Full quote:
Help! My doctor won't prescribe AMAT. What do I do?
This is currently one of the most common practical questions I get. First try providing your GI or general practice doctor with the Core Research Pack on this site, and then requesting that they consider prescribing AMAT once they are fully informed. Better still, have them view the videos on the website. Of course, I would be happy to evaluate you in my office in New Mexico if you are able to travel to see me. If that is impossible, check the RedHill trial sites for a location near you. There are supervising doctors at each site, many of whom have their own GI practices. They would be familiar with AMAT and would be able to discuss it with you. Alternatively, integrative or functional health doctors are generally open minded practitioners and many patients have had success once they are provided the research. If you have exhausted all of these options, please contact TheCrohnsInfection.org as we are building a private database of practitioners and will assist if possible.
Taken from: https://humanpara.org/anti-map-qa/

The link he gave has changed. To contact them, you should go to this link: http://humanpara.org/contact/
12-02-2017, 09:38 AM   #74
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Crohn2357- In regard to the above info about finding an AMAT doc, that is one of the biggest challenges people who want AMAT face now. Understandably, since it's not fully approved and considered off label, and we live in a fairly litigious society. Hopefully this is just a stop gap measure until RedHill is approved.

And just as a little background, the website changed from The Crohns Infection to Human Para when it became an IRS nonprofit. Prior to that it was just some of us trying to put out good info to people who needed it, but we couldn't do much since we didn't have funding. Now, as a nonprofit we can do things like sponsor conferences and research, and give people tax credit for donations. We have the ability to actually move this forward as a legitimate organization. Also, we decided we wanted to focus more on MAP diseases and not just Crohn's, so that was another reason for the naming switch. 😀

We do in fact keep a private list of doctors around the world that patients contribute to since we get a LOT of inquiries from patients asking for a doctor in their area. The privacy is required because we certainly don't want anyone to get in trouble for prescribing off label. Also, prescribing AMAT is very situational, so a doc may not want to be known for prescribing AMAT and have patients demand that if it's not right for their case. The best we can offer is that these docs may have some familiarity with MAP science and may be open to reading the research. Integrative health docs also seem to be more open minded as well.
12-02-2017, 11:54 AM   #75
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irishgal - I agree with the necessity of the precautions you have taken.

For patients (or loved ones) who are reading this support group: If you have tried all the conventional medications without achieving remission, you have a greater chance of using off label treatments. At that point, I think it would be wise to send your blood samples to Otakaro Pathways and get tested for MAP. If the test result comes back positive, at least you and your doctor will have another justification (the other being having a treatment-reftactory disease) for using an off-label treatment (like anti-MAP therapy).

According to Dr. Chamberlin, "there is a 20 year body of peer reviewed research which indicates that AMAT is as effective as other Crohn’s therapies in inducing remission"[1]. In addition to your blood culture report, show your doctor the compiled literature and resources on the MAP hypothesis[2] .

That's my two cents.

[1]: Source: https://humanpara.org/anti-map-qa/

[2]: You can find these on the first post of this support group.

Last edited by Crohn2357; 12-02-2017 at 12:13 PM.
12-02-2017, 12:54 PM   #76
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You have way more large forms than I did in my test,
Conner - after your comment I rechecked my graph and realised I made a mistake in representing the numbers. The graphs show the AVERAGE percentage of growth in each petri dish (four and five dishes cultured respectively in May and in October.
When I wrote the percentage as numbers below the graph, I forgot to divide the sum with the number of dishes. That means, the average number of different forms is way lower than the numbers written (eg. average large forms after 30 days, October = six percent, not 30). I corrected the graph. (This mistake does not change the trend)

Last edited by OleJ; 12-02-2017 at 01:21 PM.
12-03-2017, 06:23 PM   #77
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irishgal - There is no "send" button for sending a message to Human Paratuberculosis Foundation on the contact page.

Edit: I see the "submit" button near the spam check feature (calculation question) now; but it is not visible if you don't put your mouse on it.

Last edited by Crohn2357; 12-03-2017 at 06:53 PM.
12-03-2017, 09:19 PM   #78
irishgal
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irishgal - There is no "send" button for sending a message to Human Paratuberculosis Foundation on the contact page.

Edit: I see the "submit" button near the spam check feature (calculation question) now; but it is not visible if you don't put your mouse on it.
Weird - I bet this is due to the latest WP update they just did that was huge. I see whta you mean. Looks ilke they switched the color on us for that form. I'll check into it and hopefully get it back to normal!
12-04-2017, 02:36 PM   #79
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I will probably start the Anti-MAP therapy in a month's time.

Questions:

1)According to this page:
From patients who have provided this information publicly, the most commonly used daily AMAT protocol is: 1000 mg. of clarithromycin, 300 mg. of Rifabutin, 2 mg. per kg. of clofazimine. These doses are split in half and taken throughout the day. Some doctors prefer to ramp up this therapy to minimize initial side effects, starting with lower doses and gradually increasing the strength to the full dose over time.
Does Dr. Borody use this protocol?
2)I've read that Dr. Chamberlin uses different antibiotics, does anyone know why? Anyone know his protocol exactly?
3)Dr. Chamberlin states:
I've heard some doctors start all of the medication at full strength on the first day, and some start with lower doses and gradually increase over time to the full dose. What are the benefits and drawbacks to each method?
I start my patients on the full dose on Day 1 to minimize the risk of bacterial resistance. This produces more common side effects, including nausea and feeling like you have the flu for a few weeks, but I believe this approach works well for the majority of patients. The doctors who choose to slowly increase the dosage over a period of weeks do so to minimize side effects for the patient. There may be some cases of patients who have recurrent obstructions or more severe side effects initially where I would consider a ramp up method, but no studies have been done to compare these methods side by side. Therefore, which method is superior is up to each practitioner’s opinion.
Which one is better, do you think? What do others (patients and physicians) think about this? Which method is more commonly used? Which method does Dr. Borody use these days?
4) Can I use 6-mp and the triple antibiotics (Clarithromycin, rifabutin, clofazimine) together? Do you know any patients who are using these together?
5)Which side effects are common?
6)Does the altered taste perception and metallic taste in mouth (associated with clarithromycin) get better in time?
7)I am prone to migraines and headaches in general, do you know if any of these antibiotics causes headaches (I know some antibiotics do), based on your or others' experiences?
8)I have read some patients use flagyl as the 4th antibiotic; how common and necessary is this? Do you know any other antibiotics that can be used as the 4th agent (ethambutol?, for example)?
9)Do you think prebiotic and probiotic supplementation is necessary? Do you have any specific recommendations with these?
10)Which antibiotics should be taken on empty stomach, which ones should be taken with food?
11)What is the generally accepted time-period to assess the efficacy of the treatment?
12-05-2017, 08:35 PM   #80
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Conner - after your comment I rechecked my graph and realised I made a mistake in representing the numbers. The graphs show the AVERAGE percentage of growth in each petri dish (four and five dishes cultured respectively in May and in October.
When I wrote the percentage as numbers below the graph, I forgot to divide the sum with the number of dishes. That means, the average number of different forms is way lower than the numbers written (eg. average large forms after 30 days, October = six percent, not 30). I corrected the graph. (This mistake does not change the trend)
I also got my blood done Otakaro. The conclusion that was drawn was that I was in active flare status or sub-optimal control. The presentation was identical to that of Crohn's patients, except I have received a dx of UC.

Your numbers also match mine then, and you have CD. So this is all very fascinating.

According to one theory I've read, adults who are infected with MAP tend to develop UC, not CD. Children exposed to MAP tend to develop CD.

My UC is severe. Every flare becomes fulminant, even with prednisone and hospitalization. I've refused surgery every time because I've known in my heart that an infection is somehow involved and I was only able to prove it with Otakaro two months ago!
12-05-2017, 09:48 PM   #81
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Crohn2357 - these are all great questions to ask on the Human Para Facebook private group or to discuss with your prescribing doc. AMAT is very situational, and a lot of the general info is given on Human Para, but each doc really needs to decide what's best for their own patient. I know Dr. Chamberlin will consult with other docs when requested, and I think Dr. Borody does too. The patient stories on Human Para may also give you some idea of what to expect in the way of side effects. Good luck!
12-06-2017, 02:16 PM   #82
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I will probably start the Anti-MAP therapy in a month's time.

Questions:

1)[...]
Very relevan questions! I hope that over time, as more of us manage to try AMAT, we will be able to have some of the answers in here.
Also thanks for sharing you plans. I am curious to hear if (and how) you managed to get your GP / GI on board?
I tried to get my GI to read up on the core research pack at human para, but he never did and now he has quit. I am waiting for another one to start in January, and then I will ask if I too can try AMAT.
12-06-2017, 06:07 PM   #83
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Also thanks for sharing you plans. I am curious to hear if (and how) you managed to get your GP / GI on board?
I have inflammation and narrowing in my rectum and I am considered non-responsive to conventional treatments. I am facing another resection surgery, which would leave me with a permanent stoma.

At this point, I did what I suggested in this post.

You can send a private message to irishgal or humanpara.org asking for a doctor who is open-minded about this treatment and is near you.

irishgal - In regards to the dosing of Rifabutin, I have found conflicting statements on Dr. Borody's treatment protocol from different sources. Here are some examples:

1)
PARA: Can you describe your treatment protocol?
Dr. Borody:
Our treatment consists of a combination of Clarithromycin, Rifabutin and Clofazimine. We commence treatment at a lower dose and raise to a higher dose after four weeks to try to avoid any profound side effects that can occur if we go to a high dose immediately. Following baseline studies of patients including blood workup, cross sectional ultrasound of small bowel (if small bowel is involved), inflammatory leucocyte bowel scan, colonoscopy with biopsies and photography, and small bowel X-ray if relevant - we then go on to commence the patient on the anti-MAP antibiotics. They are started with a dose of Rifabutin 150mg twice daily with food, combined with Clarithromycin 250mg twice daily and Clofazimine 50mg twice daily. Second weekly the patients undergo full blood count and liver function tests to monitor changes, especially in white cell count, neutrophil levels and liver function test elevations.

Generally speaking most patients have a minimal drop in white cell count, but many of these patients, being so ill, have highly elevated white cell count, so that this never reaches a leucopenia level. In three of twelve patients, when initially treated, we did reach leucopenia which was just below the level of normality, but we did not have to stop the medication in any of these because of our stepwise elevation of drugs. If this did occur, we planned to reduce the Rifabutin and Clarithromycin dosage down to 50% until the white cells recover. At four weeks the dose then goes up to 300mg of Rifabutin in the morning and 150mg at night and 250mg of Clarithromycin in the morning and 500mg at night. We use a high dose of Clarithromycin at night, to reduce the metallic taste which Clarithromycin can cause. For the next 24 months the patients are maintained on this treatment, progressively reducing and ceasing steroids and other Crohn's treatments.
http://www.crohns.org/treatment/borody.htm

2)
Borody's current protocol dosing is 1000mg clarithromycin, 600mg rifabutin (slowly ramped up from an initial 300mg over 3-4 months), and 150mg clofazimine (2mg/kg as Doug said).
https://anti-map.org/index.php/forum...well?start=162

3) This is from Humanpara.org. I understand that this does not specifically point out to Dr. Borody's protocol, but nevertheless, this suggests another different protocol.

From patients who have provided this information publicly, the most commonly used daily AMAT protocol is: 1000 mg. of clarithromycin, 300 mg. of Rifabutin, 2 mg. per kg. of clofazimine. These doses are split in half and taken throughout the day. Some doctors prefer to ramp up this therapy to minimize initial side effects, starting with lower doses and gradually increasing the strength to the full dose over time.
https://humanpara.org/treatment-of-c...i-map-therapy/

4) Again, from the same source above. This is the RHB-104 dosage, which was suggested by Dr. Borody If I am not mistaken.
RedHill gradually increases the dosage, with each capsule containing 95 mg clarithromycin, 45 mg Rifabutin, and 10 mg clofazimine. Eventually, the patient will take 5 capsules, twice a day for a total dosage of 950 mg. of clarithromycin, 450 mg. of Rifabutin, and 100 mg. of clofazimine.
Do you know what is his current protocol now? Dr. Borody is off on sick leave until the 1st of March, so I can't reach him.

I would appreciate your (and others', if anyone knows) input on this.

Last edited by Crohn2357; 12-06-2017 at 06:27 PM.
12-06-2017, 11:48 PM   #84
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Regarding rifabutin, there may have been some confusion early on about rifabutin vs. rifampin dosage. I clarified with Dr. Chamberlin recently, and he said it was generally 300 mg daily rifabutin, 600 mg daily of rifampin. Patients take one or the other. However, he also mentioned RedHill would sometimes use 450mg rifabutin, and they have done a lot of research on dosages. So definitely not 600mg rifabutin!
12-13-2017, 02:52 PM   #85
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Some thoughts on short-chain fatty acids (SCFA, such as acetate, propionate, and butyrate) and MAP.

I realise this might seem a bit off the main topic of this thread, but on the other hand: What if SCFA's in some way inhibit MAP growth?

Science is currently focusing on the production of SCFA in the colon as a mechnism that may reduce inflammation. Interestingly
one study by R Arrazuria et. al found the butyrate-producing bacteria species Anaerostipes to be negatively associated with MAP infection.

Not a whole lot of data I admit, but in order not to cherry pick, I did search for studies reporting no association between SCFA's and MAP, and found none. I thought I'd bring this up because there is so much focus on short-chain fatty acids and GI health in general:
Isolation of lactate-utilizing butyrate-producing bacteria from human feces [...]
Short-chain fatty acids [...] are formed by microbial fermentation, and influence the health and function of the host colon (Cummings, 1981; Mortensen & Clausen, 1996). In particular, butyrate is the preferred energy source for epithelial cells of colonic mucosa (Mortensen & Clausen, 1996; Hagueet al., 1997), stimulates cell proliferation (Sakata, 1987), and promotes mucus release from colonic mucosa (Shimotoyodomeet al., 2000). In addition, butyrate has been implicated in providing protection against colonic cancer and colitis (Whiteheadet al., 1986; Scheppachet al., 1992, 1998; Segainet al., 2000; Perrinet al., 2001; Ruemmeleet al., 2003).

And this: Bowel Wars: Hydrogen Sulfide vs. Butyrate

The fuel for the bacteria producing SCFA's comes from Resistant Starches. This is interesting, as many of us try to avoid starch altogether (SCD, paleo, GAPS). Maybe that strategy should be altered, so that we limit the amount of regular starch in the diet, but include Resistant Starches (along with fiber)...

Last edited by OleJ; 12-14-2017 at 12:50 AM.
12-13-2017, 05:02 PM   #86
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In Germany, some doctors have been using butyrate enemas (can't remember its clinical trial/trademark? name right now) to treat ulcerative colitis.

The probiotic yeast S. Boulardii increases the amount of butyrate in the gut[1].

SCD restricts eating polysaccharides; but paleo has a wide spectrum ranging from very low carb (even ketogenic paleo) to high carb paleo... Paleo diet do not restrict eating polysaccharides, and most of the paleo websites I have seen endorse taking RS[2].
I think consuming RS is much more popular within the UC population than CD patients.

[1]:http://www.crohnsforum.com/showthrea...745#post884745
[2]:Sarah Ballantyne's warning is worth reading though: Resistant Starch: It’s Not All Sunshine and Roses

Last edited by Crohn2357; 12-13-2017 at 07:03 PM.
12-14-2017, 04:02 PM   #87
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2]:Sarah Ballantyne's warning is worth reading though: Resistant Starch: It’s Not All Sunshine and Roses
The main conclusion made by Sarah is that RS found in whole foods is beneficial, while the reducing RS foods may be why low-carbohydrate diets tend to alter the gut microbiome in unfavorable ways. It is only in one study where isolated supplemenation of RS (which cannot be generalized into other types of RS) resulted in a slightly higher DNA adduct, which can reflect oxidative stress. My point being: I think the title RS Not All Sunshine and Roses is too negative, and does not cover the topic very well.
12-14-2017, 09:04 PM   #88
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I guess the title reflects the writer's cautioning on the current "potato starch hype".
Yesterday, 01:51 AM   #89
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Combining infliximab, anti-MAP and hyperbaric oxygen therapy for resistant fistulizing Crohn's disease

Lay abstract

Nine consecutive patients with Crohn's disease and fistulae were treated with a special combination of infliximab, numerous hyperbaric oxygen sessions and combined antibiotics including rifabutin, clofazimine and clarithromycin as the base antibiotic combination – called anti-Mycobacterium avium ss paratuberculosis (MAP) therapy. At between 6 weeks and 6 months all fistulae healed – included rectovaginal – so that the skin was dry and there was no discharge and no need to wear a pad. Their Crohn's symptoms of diarrhea, urgency and bleeding also resolved. Continuation with anti-MAP therapy alone maintained healing although one patient who ceased the anti-MAP therapy had a relapse.

This study was published in 2015 and it was posted in the Research subforum back then. I am posting it here so that more people can see it, especially for people who are dealing with fistulas. I think the study is remarkable.

Last edited by Crohn2357; Yesterday at 11:39 AM.
Yesterday, 01:49 PM   #90
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amazing results, thanks for posting this.
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