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12-16-2017, 02:35 PM   #91
Crohn2357
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You're welcome.
12-16-2017, 11:07 PM   #92
Crohn2357
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Finding clofazimine:

From what I have read, some patients are finding and obtaining the clofazimine by using this website.


Clofazimine 50 mg Prices — Generic Version

Clofazimine 100 mg Prices — Generic Version
12-17-2017, 04:48 PM   #93
Connor
 
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An update. I'm past the 6 week mark since starting AMAT.

I have been having difficulties with the protocol. I've had an eye twitch for the past 3 weeks that won't go away no matter what I do, including magnesium. I've also been severely depressed and anxious, with bouts of fear and paranoia for no apparent reason. I thought it was maybe just the time of year but when I googled eye twitch and antibiotics, I was lead to many sites talking about the neurotoxicity of high dose clarithromycin that can cause these symptoms.

The improvements I mentioned earlier about my bowels were short lived. I'm back to bleeding and 5-6x daily BMs. They vary from 5-7 on the bristol scale. I've also started having upper GI pain that I've never had before in my life, including small intestine pain. I suspect that perhaps my bowel is being corroded by these drugs. Clarithro in particularly is *extremely* bitter. You have to take it with a full meal and even then it's hard on the body.

I fear that the abx are causing damage to my body. Some of the reports I read said that people had these symptoms even a year after stopping. I'm beginning to doubt this course of action. Even if it does kill MAP, what's the point if it also causes brain damage?

I'm taking 1000mg clarithro daily. I'm wondering if I should half that, even though AMAT research shows it to be ineffective at lower doses. The other problem is that sometimes the negative effects of clarithro don't kick in until weeks or months after you stop. While you're on them the body is in survival mode, putting everything it has into detoxing the abx... but once you stop it takes a rest and the true state of things is revealed.

Most MAP treatment protocols I've read say that improvements can start to be noticed as early as 1 month. For some people it's two months. It's weird how I had that brief period of 1 week with perfectly formed stool and no blood, to the point of constipation. Then it started to reverse again. Maybe that 1 week was the time of perfect equilibrium and now I am getting into imbalanced territory.

I am SO TIRED of playing guessing games with this disease. The only thing I can think to try is sending another blood sample to Otakaro to see if these 6 weeks have wiped out the majority of MAP. Though I don't see how that could be the case.

I also feel like whatever dysbiosis is being caused by the abx is a whole other level of body damage that's going to take me forever to heal. Last year I did a triple therapy for 10 days and it took about 2 months to start feeling normal.

I'm scared right now.
12-18-2017, 12:09 PM   #94
OleJ
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Conner, that's not what I had hoped for you at all. I am very sorry to hear you are getting no improvement and nasty side effects. Also, I am a bit puzzled as to why the MAP resources have no testimonies that resemble yours. Some ideas as to why:

A) - you are the only one having these exact reactions, or maybe some concurrent infection just happened to hit you, like C difficile or something (that would be unlikely, would it not?).

B) - other patients who got side effects like you describe pressed on, found relief, and never been bothered to mention the hardships in their reports.

C) - those who get the serious side effects just quit to never look back and take the time to report what they experienced.

D) - ?? some other reason ?? (any thoughts?)

From memory, the side effects that are reported are different, typically transient problems with eye inflammation (not eye twitching though), skin tone change. Anyone heard other reports of the symptoms Conner lists? (Irishgal?)

The neural symptoms sounds like something to take very seriously, and I totally get your considerations about quitting the abx. It seems like your situation calls for some expert guidence...
I hope you will get better soon!
12-18-2017, 02:22 PM   #95
irishgal
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Yeah Ole - These don't seem like the normal AMAT side effects that I've heard of in talking to patients. (Huge disclaimer - I'm not a doc!!) The hard part is MAP may not really be implicated in UC, though I know of one patient who did amazingly on AMAT and had true UC. For the majority of true UC cases (which aren't misdiagnosed as Crohn's colitis) AMAT seems to work less or not at all.

Also, Connor seems to be extremely sensitive to antibiotics and meds. There are 10-15% of people per Dr. Chamberlin's anecdotal experience who just can't tolerate the meds. Some are allergic, and others just have a really hard time with them and have to stop. This is what's hard about not having a doc who is a MAP specialist to work with. There are so few docs who can adequately prescribe and adjust AMAT, and a lot of patients and docs are learning together.

There are other stories on forums and social media about AMAT not working for patients. None on HPF, but I've offered the option to a few patients who have interesting stories with this treatment, which ultimately failed. None have taken me up on my offer yet! I think Connor's story is either an anomaly specific to him, or maybe he has UC and the cause of his disease is not bacterial, or these meds aren't hitting at the specific bacteria. The fusobacterium varium research on UC is of interest to me, and it's a different regimen.

Regardless, I hope and pray Connor finds something which will work for him! ❤️
__________________
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.
12-18-2017, 03:16 PM   #96
Connor
 
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There are 3 major variables here, actually 4.

1) Diet has been off lately, eating too much sugar (Christmas time)
2) Stopped prednisone just over a week ago.
3) Had an iron infusion 4 days ago.
4) My Entyvio dose is late by one week.

The anxiety/depression, I feel, is definitely abx related. I have not felt this way in a long time.
12-23-2017, 10:56 PM   #97
OleJ
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I wish everyone reading and writing here a merry Christmas and a happy New Year.
One of the better christmas presents is good news from the MAP vaccine development. They report the phase I trial was a success (test for safety on healthy individuals). The development now moves to phase IIa which is testing on Crohn's patients.

Keep it up, folks!

‘The phase I trial was completed with no concerns over safety. As it was the first trial of this vaccine in people, a standard ‘3+3 dose escalation design’ was used to allow us to start with a very low dose for the first few volunteers and then gradually increase the dose once we were sure that there were no safety concerns.

All doses were well tolerated, immunogenicity looks very promising, and the study is now being written up for publication.

We would like to thank the healthy volunteers who took part in this phase I study without whom it is wouldn’t be possible to develop important new therapies.’

Phase IIa, a further safety trial, this time in Crohn’s patients, remains likely to start in the first quarter of 2018, and we will provide further details about this once they become available. The set up period in clinical trials is often unpredictable and as such we are unable to give an exact start date for the phase IIa trial at the present time. Please note that recruitment has not yet started, so we therefore ask our supporters not to contact us or St Thomas’ Hospital about this. ...
12-25-2017, 07:19 AM   #98
OleJ
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There is an interesting comment by Dr. Greenstein and a colleague up on gastroendonews.com. The topic of the comment has been brought up previously in this thread but this new comment is well written and the argumentation rigorous, so I thought it was relevant to link to it:

To the Editor: More to the MAP Story

They reiterate the importance of acknowleding the anti-MAP effect of some of the usual CD drugs, in order to get valid results from past and on-going AMAT studies. Their primary concern is that the true effect of AMAT is hidden in studies, because the placebo-arm is inadvertently also recieving MAP-suppressing medicine:

[...multiple medications used in the therapy of inflammatory bowel disease cause dose-dependent inhibition of MAP in culture. These include 5-aminosalicylic acid (5-ASA),10 methotrexate,8 6-mercaptopurine (6-MP),8,11,12 azathioprine,11 cyclosporine A,9 rapamycin,9 tacrolimus,9 the 1-hydroxypiperidine-2,6-dione component of thalidomide (Thalomid, Celgene)5 and the thioamides (methimazole and thiourea).6

These medications are called “anti-inflammatories” and “immune-suppressants.” These appellations may be wrong. We suggest that they are describing a secondary physiologic response. We posit that their primary mechanism of action is as anti-MAP antibiotics...]

Last edited by OleJ; 12-25-2017 at 09:47 AM.
12-25-2017, 10:42 PM   #99
Connor
 
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I came down an enterovirus this week that landed me in the hospital. They ran a CT scan as a precaution and it showed that I have extensive small bowel inflammation. My stool tests are negative for c. diff and other obvious pathogens. Based on my recent history, it's likely that the antibiotics have been ravaging my gut. I have been taking probiotics this whole time but they obviously aren't helping.

On the advice of doctors and more importantly my own intuition, I've had to stop AMAT. My small bowel is in a lot of pain and my food absorption status is questionable. I've had to revert to taking morphine again.

The preliminary assumption is that the antibiotics have been corrosive to my bowel and productive of new inflammation. Once the enterovirus hit, everything exploded. My CRP in the hospital was 120 despite no signs in my colon. For the first 4 weeks of AMAT I was also on prednisone. In the last 2 weeks all the pain and discomfort I was experiencing were probably the previously masked side effects of the abx coming to light once my pred taper was complete.

It's interesting that at the beginning of December I had perfect stools and it seemed like everything was normal, but it then turned to constipation and renewed inflammation. I still cannot explain this anomaly.

The one thing I really need to say to the IBD / AMAT community at large that really is driving me crazy is that people need to STOP always calling symptoms "die off" when somebody complains about a set of symptoms. It's highly unlikely that you're having massive die off symptoms after a month of being on full dose AMAT. The majority of die off is going to happen in the initial stages as the active MAP + your gut flora are all dying. After that, "die off" events are more than likely something else, like your own native body tissue becoming inflamed, detox reactions from the antibiotics themselves, etc. When I told the ER doctors that I had been on Clarithromycin for 6 weeks they just shook their heads and said that it's a powerful antibiotic that is very harsh on the guts of most healthy people, let alone someone with IBD. I knew this going on, it's not news to me... but seeing the results in technicolour is another story!

I am glad I gave this a try. I'm upset that I probably still have MAP but have no real way to deal with it now. I wasn't able to stay on AMAT long enough to look for evidence that my IBD was improving with it. What I should have originally done was waited 6+ months for my flare damage to heal before trying AMAT. It may also just be that I can't handle long-term antibiotics like this.

The radiologist who examined my CT scan wrote in his report that I show Crohn's signs, but this should be re-assessed by a GI doctor. There are signs in the terminal ileum. The problem is that enteroviruses can also cause these signs so it's hard to distinguish. I will need follow up endoscopes. It's also possible that the antibiotics have been severely irritating to my gut but it was not possible to know due to simultaneously prednisone use.

I will come back to give an update once I have more information. I am super depressed that this treatment avenue has turned out this way. I feel like the answers are all still unclear. If I do indeed have Crohn's then it means my original diagnosis was wrong or my UC has progressed to Crohn's, which would fit with the MAP picture. Unfortunately now that I have stopped AMAT, future resistance to AMAT antibiotics is likely. FMT is really my last treatment avenue... after that, I have nothing left to throw at my UC. I've done it all.
12-26-2017, 01:45 PM   #100
OleJ
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I am truly sorry to hear that you got so ill. IBD is just such a F..&%"¤% piece of ..¤%"&&# disease.
I probably mentioned this before, but Methotrexate (MTX) in a low dose (10-15mg/week) works well for me (with CD). It takes a month or maybe more for the full effect. Greenstein et al. found MTX to inhibit MAP in vitro.
I hope you will stick around and share your thoughts with us. Your observations regarding the "die off" term are relevant.
12-27-2017, 07:20 AM   #101
SauceySciencey
 
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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!
I was reading Dr Chamberlains Q&A, and he mentions the herxheimer reaction.

Typically, it's low level sepsis.

That's fever, tachycardia, etc. It's the same "side effect" you get from vaccines (some people). Even non-vaccines will do it (obviously, since AMAT does it).

Crohn was trying to vaccinate people with anti-dysentery serum, and he found it only reduced symptoms, induced remission in people who had a reaction, much like the herxheimer. Other GIs of the time (Hurst, for example) then tried the same thing using silver/mercury/even horse serum. Same results. Only a response following the "serum shock"...

There is also the possibility that the antibiotic is efficiently killing alot of microbes, thus rendering the resulting broken up bacteria to be exposed and taken up through the intestinal wall and into the blood stream, and inducing "serum shock/herxheimer etc", which "resets" the immune system much in the same way Dr Chamberlain says.

It is more than possible that, in addition to hypothesising AMAT therapy works by targeting MAP, it also is equally possible, I suppose, that it is the mass wave of antibiotics killing any and all microbes and thus exposing the body to such a wave of antigenic diversity induces the herxheimer reaction which itself is the "culprit" for the clinical response. Whilst at this point all cards are on the table and each horse has a shot at winning, I lean towards this idea simply because it ties in across a spectrum of diseases (even cancer). But in the end, it's only the scientist in me that cares about that, the patient in me just wants something to work!
12-27-2017, 07:33 AM   #102
SauceySciencey
 
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I came down an enterovirus this week that landed me in the hospital. They ran a CT scan as a precaution and it showed that I have extensive small bowel inflammation. My stool tests are negative for c. diff and other obvious pathogens. Based on my recent history, it's likely that the antibiotics have been ravaging my gut. I have been taking probiotics this whole time but they obviously aren't helping.

On the advice of doctors and more importantly my own intuition, I've had to stop AMAT. My small bowel is in a lot of pain and my food absorption status is questionable. I've had to revert to taking morphine again.

The preliminary assumption is that the antibiotics have been corrosive to my bowel and productive of new inflammation. Once the enterovirus hit, everything exploded. My CRP in the hospital was 120 despite no signs in my colon. For the first 4 weeks of AMAT I was also on prednisone. In the last 2 weeks all the pain and discomfort I was experiencing were probably the previously masked side effects of the abx coming to light once my pred taper was complete.

It's interesting that at the beginning of December I had perfect stools and it seemed like everything was normal, but it then turned to constipation and renewed inflammation. I still cannot explain this anomaly.

The one thing I really need to say to the IBD / AMAT community at large that really is driving me crazy is that people need to STOP always calling symptoms "die off" when somebody complains about a set of symptoms. It's highly unlikely that you're having massive die off symptoms after a month of being on full dose AMAT. The majority of die off is going to happen in the initial stages as the active MAP + your gut flora are all dying. After that, "die off" events are more than likely something else, like your own native body tissue becoming inflamed, detox reactions from the antibiotics themselves, etc. When I told the ER doctors that I had been on Clarithromycin for 6 weeks they just shook their heads and said that it's a powerful antibiotic that is very harsh on the guts of most healthy people, let alone someone with IBD. I knew this going on, it's not news to me... but seeing the results in technicolour is another story!

I am glad I gave this a try. I'm upset that I probably still have MAP but have no real way to deal with it now. I wasn't able to stay on AMAT long enough to look for evidence that my IBD was improving with it. What I should have originally done was waited 6+ months for my flare damage to heal before trying AMAT. It may also just be that I can't handle long-term antibiotics like this.

The radiologist who examined my CT scan wrote in his report that I show Crohn's signs, but this should be re-assessed by a GI doctor. There are signs in the terminal ileum. The problem is that enteroviruses can also cause these signs so it's hard to distinguish. I will need follow up endoscopes. It's also possible that the antibiotics have been severely irritating to my gut but it was not possible to know due to simultaneously prednisone use.

I will come back to give an update once I have more information. I am super depressed that this treatment avenue has turned out this way. I feel like the answers are all still unclear. If I do indeed have Crohn's then it means my original diagnosis was wrong or my UC has progressed to Crohn's, which would fit with the MAP picture. Unfortunately now that I have stopped AMAT, future resistance to AMAT antibiotics is likely. FMT is really my last treatment avenue... after that, I have nothing left to throw at my UC. I've done it all.
Hi Connor

We haven't met but I was reading essentially the entirety of this message trail so by the end with this bad news it's like I'm feeling sorry for someone I know already! I'm really sorry things didn't work out for you like with others. I really hope you get a diagnosis soon and get a treatment plan in place. I remember being in that space of not knowing one way or another and also having to deal with pain etc. I hope you find, if not a way out of CD/UC land (we should find some musicians on this board, make a heavy metal PAIN band, and call them CD/UC (like AC/DC?)), then a way to get comfortable which is what all of us had to do at some point. There are some good and great people here who'll listen to you with more care than anyone in your life since we all know what your going through, and when we say "I understand" we really mean it!

Hope you feel better soon!
12-29-2017, 10:57 PM   #103
Connor
 
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Now that I've stopped the antibiotics and have been doing intensive probiotics, my bowels have become a lot more regular. Solid stools, no blood, although I'm still going 4-5 times daily and there is pain from the recent rawness. I figure that will get better as time goes on. I was even able to start going back to the gym today.

I have been wondering if maybe the 6 weeks of antibiotics cleared other things out that I'm not aware of. I'm also concerned that if my UC is MAP related, that the abx temporarily scaled back the numbers which is why I'm feeling so good. My research into mycobacterial infections has shown that most patients feel better within 1-3 months which tempts them to the stop the treatment because they think they're cured. Then the mycos come back and they're antibiotic resistant.

It's such a shame because underneath the antibiotics, it seems like I have a fairly healthy bowel now. It's possible that if I didn't have such a harsh reaction to the abx, that my current condition is what it would've been like while I was on them.

I'm not really sure how to proceed going forward. Stopping the abx felt right, but my MAP treatment is incomplete. I flare with predictability once per year. I have confirmed mycos in my blood, but whether or not they are IBD related is hard to say. Otakaro does not identify them as MAP, just as mycos.

So I don't really know what to do... that's where I'm at.
01-01-2018, 01:39 PM   #104
Crohn2357
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About rifabutin dosage:
http://www.crohnsforum.com/showthrea...468#post997468
01-02-2018, 03:12 AM   #105
OleJ
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Connor once again thanks for taking time to share your findings with us, although the outcome was not what one would hope for.

Also, thanks for linking to that thread Crohns2357. I was not aware this topic was so well discussed/covered already back in 2015.
01-03-2018, 04:33 AM   #106
Crohn2357
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"AMA with Amy Hermon-Taylor, who fronts the Crohn's MAP Vaccine."


Addition: "IamA CEO of Qu Biologics developing a new investigational treatment for Crohn's disease. AMA!"

Last edited by Crohn2357; 01-03-2018 at 07:13 AM.
01-04-2018, 10:05 PM   #107
Connor
 
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You're welcome OleJ. My plan is to see if my bowels achieve remission going forward. As I mentioned before, my UC is highly cyclical and refractory. I get a flare once per year like clockwork, but in between my bowels are very normal, so is my diet. So something is very amiss.

What I'm going to do is wait a couple months until the flare is well behind me, then I will re-test for mycobacteria at the Otakaro Lab. I want to see what my numbers look like under healthy conditions.

I also have the option of re-starting AMAT down the road. I might need a lower dose or a different combo of abx. All I know is that I don't want another life and death flare to strike again... I am so over it.

For now I'm taking LDN 3.5 every night before bed, DHEA, and Entyvio once monthly.
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