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10-29-2017, 09:44 AM   #31
OleJ
 
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Six years ago, while on Humira, my creatinine levels suddently started to rise. A biopsy revealed chronic changes to both kidneys (interstitial nephritis). Could be an extraintestinal manifestation of CD, but most likely a side effect of the biologic, according to my specialist.
Better get off it, the GI said. So I did and got quite sick very quickly. OK, the GI said. Lets try Remicade. OK I said.
A year later, I was sitting the chair reading while the Remi was dripping through the IV i heard a "Thump" and the person next to me fell over in spasms. The nurses picked her up, tilted the chair backwards, stopped the IV and gave her an injection. Slowly she came to. She was taken to another room, the rest of us continued.
One year after that, creatinine started to rise again. Estimated kidney function now 40%. Then I stopped biologics for good. I have managed to do without, but that's another story.

My point is this: Bring ignorant about side effects is one thing, making a judgement call between risk of side effects and therapeutic benefit is another. I believe Conner is doing the latter.

Sure, the antibiotics could result in some unwanted cytotoxic reaction, but hey, we are already in a place where there are certain risks no matter what route we go, whether it be biologics, sterorids, AMAT, cancer drugs or nothing at all.
10-29-2017, 09:45 AM   #32
irishgal
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Crohn2357 - I assume your vitriol is directed at me? And now that I'm reacting (for the benefit of all on this thread) I guess I'm "stupid?"

I never mentioned that I believed microbiome shifts were the only negative effect of long term antibiotics. I don't know where you got that. My above comment was specifically questioning the effect of antibiotics on gut bacteria as related to the interplay of MAP. I know long term antibiotics can have significant side effects as you mentioned. But so can all other CD treatments, and when the patient is out of traditional options, most are willing to assume more risk since untreated CD presents a serious risk as well.

Not really sure why you started this thread if you are stressing the risks of antibiotics and not looking at the benefits as well. And no need to get nasty. This is an open dialogue between patients who are suffering and want to learn. I've been lucky that AMAT has healed me and I haven't had serious permanent side effects. To get a prescription, presumably every patient would have to discuss the risks and benefits of AMAT with their doc, and also be continuously monitored for side effects. Don't really see what your problem is, but seems as if you have an ax to grind against AMAT.
__________________
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.
10-29-2017, 11:04 AM   #33
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May I suggest that we have a look at the topic at hand from a slightly different approach: What do the experts say about the side effect profile of AMAT, and what are the popular descriptions of the side effects profile of the AMAT drugs?
One statement from William Chamberlain, commenting the Selby et. al. study:

[...] The data support another interpretation: AMAT provides a more effective treatment regimen with a more favorable side effect profile than current conventional therapy. [...]

Granted, Chamberlain treats patients with AMAT himself, so he may be biased, but it does seem like the Selby study at least did not report any severe side effects.

AMAT drug side effects, as written on www.medicinenet.com:
(Note: any cocktail effect is not taken into consideration)

Side effects for clofazimine
More common side effects include: loss of appetite, diarrhea, nausea, vomiting, dry skin and discoloration (from pink to brownish-black) of the skin, stools, urine, saliva, sweat, tears or lining of the eyelids. Other side effects reported are changes in taste, dry or irritated eyes, headache, fever, increased blood sugar and an increased sensitivity to sunlight.

Clarithromycin is generally is well tolerated, and side effects usually are mild and transient. Common side effects of clarithromycin are: nausea, diarrhea, abnormal taste, dyspepsia, abdominal pain and headache.
Other important side effects which are rare, but serious include:
liver failure, hearing loss, and seizures.
Clarithromycin should be avoided by patients known to be allergic to clarithromycin or other chemically-related macrolide antibiotics, such as erythromycin. Treatment with clarithromycin and other antibiotics can alter the normal bacteria flora of the colon and permit overgrowth of C. difficile, a bacterium responsible for pseudomembranous colitis. Patients who develop pseudomembranous colitis as a result of antibiotics treatment may experience diarrhea, abdominal pain, fever, and sometimes even shock.

Rifabutin:
side effects: Diarrhea, stomach upset, changes in taste, or nausea/vomiting may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.This medication may cause urine, sweat, saliva, or tears to turn brown-orange. This effect is harmless and will disappear when the medication is stopped. However, dentures and contact lenses may be permanently stained. Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects. Tell your doctor immediately if any of these rare but serious side effects occur: easy bleeding/bruising, signs of a new infection (such as fever, persistent sore throat/cough), muscle weakness/pain, joint pain/swelling, eye pain/redness, vision problems, chest pain/pressure, persistent nausea/vomiting, unusual weakness/tiredness, dark urine, yellowing eyes/skin.This medication may rarely cause a severe intestinal condition (Clostridium difficile-associated diarrhea) due to a type of resistant bacteria. This condition may occur during treatment or weeks to months after treatment has stopped. Do not use anti-diarrhea products or narcotic pain medications if you have any of the following symptoms because these products may make them worse. Tell your doctor immediately if you develop: persistent diarrhea, abdominal or stomach pain/cramping, blood/mucus in your stool.A very serious allergic reaction to this drug is rare. However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects.
10-29-2017, 01:37 PM   #34
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Love it Ole. Very informative. Knowing how they react together though is important. I know from the research done by Naser and crew in vitro that the triple combo in RHB104 has some synergistic type effect. Studies posted below. I've also been told to space the rifampin as far from the clarithromycin as possible since it can speed up the clarithro metabolism and lower the clinical level in the bloodstream. I believe the RedHill pill uses a buffering system with PEG or possibly a capsule inside a capsule (the patent was very hard to understand!) to combat this effect.

The AMAT docs have told me that the side effects of AMAT, while possible, are not as serious or common as those of biologics. I know they're probably biased, but they've also treated a lot of patients. Long term is an issue that concerns me, but I know some TB patients take them for years, so at least there is that data available, as well as the few reported of CD patients. As has been mentioned, it's a risk/benefit analysis to discuss with your docs.
10-29-2017, 06:59 PM   #35
Crohn2357
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http://www.medicaldaily.com/antibiot...nts-all-247367
https://www.ncbi.nlm.nih.gov/pubmed/...lian+cells%2C”
http://stm.sciencemag.org/content/6/238/238ec92
https://www.nature.com/nbt/journal/v.../nbt.2574.html

These articles suggest that bactericidal antibiotics[1] may increase oxidative stress. In addition to supplementing with probiotics, it might be a good idea to take antioxidants and eat an especially anti-oxidant rich diet if you are using the long term antibiotic therapy. This might help fighting with the ROS build up.


[1]: General info on this: https://courses.lumenlearning.com/bo...obial-therapy/

Antimycobacterial agents were evaluated with respect to their bacteriostatic activity (growth inhibition) versus the bactericidal activity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1140486/
10-29-2017, 09:51 PM   #36
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....

Last edited by Connor; 10-30-2017 at 01:36 AM. Reason: No point
11-01-2017, 10:21 PM   #37
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Short update to my MAP-levels-trend-experiment:
The MAP culturing process has now started. At the same time the blood was drawn, a week ago, I had a Calprotectin test done. Results just came back elevated: 285 ug/g. That is consistent with my symptoms. Tests earlier this year while on Methotrexate have been <100 ug/g, indicating remission.
After the tests I started Methotrexate 12.5mg/week orally. Diarrhea has already gone, and I feel better.
It will be very interesting for me to learn if the flare has led to an increased number of M. Paratuberculosis bacteria in my blood. I will post the results when they arrive.

In the meantime I found a very interesting study testing the action of Methotrexate and 6-MP on MAP in vitro (in the lab). The study found Methotrexate to inhibit MAP growth almost as effectively as Clarithomycin, 6-MP somewhat less.
Maybe Methotrexate should also be called Anti-MAP therapy?

https://www.ncbi.nlm.nih.gov/pmc/art...5/#!po=46.8750

The study propose that the primary action of Methotrexate and 6-MP in IBD to kill MAP bacteria:

Both methotrexate and 6-MP interfere with DNA replication. Methotrexate acts by inhibiting dihydrofolate reductase, folate generation and the consequent production of adenine.[12] The mechanism of action of 6-MP is to substitute for guanine in DNA replication.[12] Because prokaryotes (simple cells, such as bacteria, OleJ's comment) must synthesize their own folic acid, they should be more susceptible to folate inhibition than eukaryotes. (More complex cells, such as human cells, OleJ's comment)
11-02-2017, 11:45 PM   #38
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Adverse events during two years of AMAT treatment of around 100 patients in the 2007 Selby study

Adverse Events
Overall, the treatment was well tolerated; only 16
subjects were withdrawn because of an adverse event: 8 in
each group, including 5 each in the induction phase.
Several adverse events were significantly more common
in the antibiotic group than the placebo group during
the induction phase: abnormal liver function (2.3% vs
0.3%, respectively), vaginal candidiasis (4.0% vs 0.8%, respectively),
abdominal distention (3.4% vs 0.8%, respectively),
myalgia (2.3% vs 0.3%, respectively), and urine
discoloration (2.8% vs 0.3%, respectively). Between weeks
17 and 52, arthralgia (3.5% vs 1.2%, respectively) and
tooth discolouration (2.3% vs 0.2%, respectively) were the
only adverse events significantly more common in those
on antibiotics than on placebo. The number needed to
harm during the induction phase was 77 and, for the
whole study, 40.
11-03-2017, 10:28 AM   #39
Guerrero
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Toot discolouration, outch not nice :S

Do you have an idea of the adverse events level with biologics?
11-04-2017, 11:31 AM   #40
OleJ
 
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Guerrero, I know there are reports of allergic reactions and serious infections but don't have the statistics. Also, I suspect not all adverse effects are registered, because there is no way of proving that Remicade caused them. I got a very serious infection in my kidneys, and it is unclear if that came from Anti-TNFa or Crohns. It has to be said I had been on Remicade and later Humira constantly since year 2000.
11-04-2017, 11:36 AM   #41
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Another note: Could the Redhill Anti-MAP therapy study be flawed??
Learning that Methotrexate (MTX) and 6-MP have Anti-Map effects in vitro made me think if they are allowed as a supplemental treatment in the Redhill Study. And--- YES THEY ARE!

The same researcher (Greenstein) who reported the Anti-MAP effect of MTX and 6-MP(I linked to the study above) has actually warned about this in this commentary.
This is bad news. It could mean the therapeutic effect of the Anti-MAP antibiotics do not stand out over the other drugs given to both arms in the study.
11-04-2017, 05:48 PM   #42
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Ole - that has been a common issue and came up at the Philly conference. There was some debate on Dr. Greenstein's methods as well, which hasn't been reproduced. Ultimately, I don't think you see a lot of patients jumping up and down saying their CD was healed by 6MP or MTX, though they both do seem to help some. If you add on Rhb-104 to those, and people do incredibly well, then you'd have to conclude it was the RHB that was doing the bulk of the healing. Keep in mind, a lot of the patients in the RedHill trial had already been on a therapy for a while and still had moderate to severe CD to qualify for the study. So it's not like their current therapy is doing all that much.
11-05-2017, 07:03 PM   #43
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Hello

I am a long term Crohn’s sufferer and I am looking for information about Dr Jeremy Sanderson ant the anti-MAP therapy. After trying and failing immunosuppression I read about this new therapy in the Human Para Foundation website where Dr Sanderson’s was mentioned. I understand he is one of the few doctors in the world who provide anti-MAP therapy. I would be grateful if anybody who is being treated or has been treated by him could share their experience so I can get some feedback before I decide whether to make an appointment. I am especially interested in hearing from people who see him in private and/or from outside the UK. I am not a UK resident so things would be more complicated for me.

Thank you

(I hope I posted in the right thread)
11-05-2017, 09:22 PM   #44
irishgal
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Are you in Europe Crohnsufferer? Have you looked for docs in your local area? I know Dr. Sanderson sees private patients at the Shard building location and I've heard good things.
11-06-2017, 02:53 AM   #45
Crohn2357
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http://www.medicaldaily.com/antibiot...nts-all-247367
https://www.ncbi.nlm.nih.gov/pubmed/...lian+cells%2C”
http://stm.sciencemag.org/content/6/238/238ec92
https://www.nature.com/nbt/journal/v.../nbt.2574.html

These articles suggest that bactericidal antibiotics[1] may increase oxidative stress. In addition to supplementing with probiotics, it might be a good idea to take antioxidants and eat an especially anti-oxidant rich diet if you are using the long term antibiotic therapy. This might help fighting with the ROS build up.


[1]: General info on this: https://courses.lumenlearning.com/bo...obial-therapy/

Antimycobacterial agents were evaluated with respect to their bacteriostatic activity (growth inhibition) versus the bactericidal activity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1140486/
"How do antibiotics affect human mitochondrial function, especially on the long term?" I've been wondering about this for some time.

First, read this: Cooper GM. The Cell: A Molecular Approach. 2nd edition. Sunderland (MA): Sinauer Associates; 2000. The Origin and Evolution of Cells.

Endosymbiosis: https://en.wikipedia.org/wiki/Symbiogenesis
http://biology-pages.info/E/Endosymbiosis.html
https://evolution.berkeley.edu/evoli...dosymbiosis_04


Indeed, mitochondria, the organelles responsible for energy production in the cell, have bacteria-like DNA and other molecules, suggesting that mitochondria are the product of an ancient endosymbiotic event, in which a bacterium was engulfed by another cell. The important implication of this, said Ronald DePinho, president of the MD Anderson Cancer Centre in Houston, Texas, who also did not participate in the research, is that “drugs targeted to [bacterial] physiology might also impinge on mitochondrial biology.”
and a comment on this report:
In additon to the disruption of normal ROS signalling pathways mentioned in this paper many antibiotics have two other deleterious effects in human cells. They decrease respiratory competence and shift cell populations to aerobic glycolysis (the Warburg effect) resulting in localized lactic acidosis and a microenviroment favorable to tumor formation, tissue invasion and metastasis. In addition increased poduction of ROS is mutagenic to both nDNA and mtDNA destabilizing both genomes, decreasing mitochondrial survellance and clearing of tumorigenic karyotypes in the nucleus by the intrinsic apoptotic pathway, both hallmark features of cancer. I suggest (in agreement with many other investigators) that such antibiotics are carcinogenic and thus the findings reported here are very clinically relevant especially when administered for chronic infection. We need to find alternative antimicrobial therapies for non life threatening infections that do not harm these patients.
http://www.the-scientist.com/?articl...-Antibiotics-/

From:http://www.the-scientist.com/?articl...-Mitochondria/
https://medicalxpress.com/news/2015-...ochondria.html (the same story)

https://biology.stackexchange.com/qu...t-mitochondria
https://biology.stackexchange.com/qu...ia/48004#48004

These are discussed in the context of healthy populations; but when you think about the findings on Crohn's and mitochondrial dysfunction, this becomes even more important.

Mitochondrial dysfunction in inflammatory bowel disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4589667/

Mitochondrial dysfunction, persistent oxidative damage, and catalase inhibition in immune cells of naïve and treated Crohn's disease.
https://www.ncbi.nlm.nih.gov/pubmed/19637347

Next two articles (below) sort of explain why anti-tnf's work in Crohn's, and why they do better than the traditional immunosuppressants on tissue healing:

Role of oxidative stress and antioxidant enzymes in Crohn’s disease
http://www.biochemsoctrans.org/conte.../1102.full.pdf

Mitochondrial Dysfunction in a Patient with Crohn Disease: Possible Role in Pathogenesis
http://journals.lww.com/jpgn/Fulltex..._Crohn.14.aspx

"Gene that affects cell power supply may hold key to bowel disease"
https://www.sciencedaily.com/release...0517101159.htm

"Studying the role of damaged mitochondria in causing Inflammatory Bowel Disease."
https://www.crohnsandcolitis.org.uk/...s-inside-cells
11-06-2017, 09:02 AM   #46
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Hi irishgal,
yes I am in Europe and unfortunately there are no doctors in my area who prescribe anti-MAP therapy. It won't be too difficult for me to go to London but it is expensive so I wanted to make sure I found the right doctor and that he is good at what he does.
11-06-2017, 02:09 PM   #47
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I suggest everyone ignore Crohn2357. He's just here to troll with scary research and not really have a genuine discussion about the clinical experiences with AMAT. I wish the mods would do something about it. What matters more is what IBD patients on AMAT are saying. Random research about the dangers of antibiotics is not very helpful. We need to look at the clinical data.

As for me, an update... I started AMAT 4 days ago. The herx reaction is very intense. Mind you, I have ulcerative colitis and not CD so my experience may be different. I started at full dose - 500mg clarithromycin 2x daily, clofazimine 100mg 1x daily, rifampin 300mg 2x daily.

The reason why I chose to start at full dose is because the most experienced doctors with AMAT recommend it in order to avoid bacterial resistance.

I'm also taking LDN 3mg.

So far the harshest effects are on my bowels. I was already at the tail end of a flare but now my bleeding and pain have increased. However, I'm not flaring. I think the drugs are just really irritating to the GI. The other effect I'm noticing is that my face is extremely dry and inflamed, which I have heard is a side effect of clofaz, but it may also be a herx reaction. Either way it's too soon to tell. I've been moisturizing 3-4 times a day and it doesn't seem to be helping. I am also a lot more dry in general.

I am getting blood work done this afternoon to see where my body is at. My biggest concern right now is that my hemoglobin was already on the lower side before this, and if it's getting too low from the increased bleeding I may have to consider stopping. However, if the bleeding is a result of a herx, it should get better after these first two weeks. The general suggestion I've been given is that if I can tolerate the meds for 1 month, but if after that 1 month I'm not improving, then I should probably stop.

I've upped my probiotics a lot. There are mixed opinions on this. Some say to wait for the initial die off to stop before adding pros, others say you need to be doing pros between antibiotic doses to avoid c. diff. The clinical literature on AMAT and c. diff seems to indicate that it's actually rather rare, unless you were already prone to it.

Two days ago I received a glutathione IV from a naturopath, and I have started taking milk thistle twice daily. I'm trying to give my body as much liver protection and detoxing capacity as I can.

I considered starting with levofloxacin instead of clofazimine but the black box warning about tendon ruptures from the fluoroquinolone family of drugs made me opt against it. It does tendon damage to 100% of people who take it, it's just that in some the damage manifests as actual symptoms. I've read many horror stories. I would not take a fluoroquinolone unless it's literally a life and death situation. Clofazimine on the other hand is also a very harsh drug. The clinical data shows 50% of people who take it end up stopping it. My intuitive sense is that, of the three I'm taking, clofaz is causing the most problems.

On the whole though, my symptoms are not as bad as they could be. No nausea, thank god. For me nausea is a deal breaker. So far it's lower GI symptoms + face dryness, and if these get better as time goes on then I think I can live with this protocol.

Down the road I'm also looking into fecal transplant. UC'ers tend to do well with those, and I'll need to replenish my bowel flora after all these antibiotics.
11-06-2017, 02:21 PM   #48
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My mycobacterial infection was diagnosed by Otakaro Lab in New Zealand. Right now it's the most accurate method available. The Crohn's Vaccine development program is also creating an accompanying rapid MAP test that will be available in the future, but for now Otakaro is the best we've got. There are other labs in the world that test for MAP using blood PCR assays, but they aren't as accurate. You really need to culture blood to find the MAP, and MAP has very specific requirements to be seen in a culture.

It's difficult in general to run a PCR assay on MAP because researchers are still figuring out the best RNA sequences for identifying it. Otarko has identified active mycobacteria in my blood, but whether or not they are MAP is not certain. However, because the infection is active and my IBD is refractory, I decided to give AMAT a try anyway. The difficulty with UC and MAP is that UC patients tend to have the same numbers of mycobacteria as the healthy control group, so MAP may not be the causative factor of UC, but rather a complicating factor. Most healthy people have some mycobacteria in their bodies. They are ubiquitous in the environment. However, people with IBD have some kind of immune deficiency which can't prevent the mycos from causing harm, especially in CD patients. However, some UC patients go into remission with AMAT. I think if you're a CD patient you have a much higher chance of this successfully working.

I'll post more updates later in my treatment.
11-06-2017, 06:18 PM   #49
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Good luck with your treatment Connor. Let us now how you do. I know the beginning is pretty rough, especially if you start full strength. I did as well, mostly because that's what my doc told me, and I didn't know any better. But with my case, it got all of the horrible effects out of the way in the beginning during the die off and I think it killed any MAP that was active at the time, which I think was a bunch per my culture (also from Otakaro.) Crossing my fingers it works spectacularly for you!
11-07-2017, 05:24 AM   #50
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Good luck Conner, and thank you for updating us here.
Crohnssufferer: I also considered contacting Dr. Jeremy Sanderson, I even got my GI to write up a referral document (which is required to get an appointment) but I am also afraid of the cost, and I want to get the results of a blood culture test first. I will update you if I go ahead.
Irishgal - Good to hear is topic was covered in Philly. In an optimal study design though it seems a solid MAP culture test of subjects prior to AMAT, and more research on the effect of MTX and 6MP would have been nice gauges for the efficacy.
11-09-2017, 01:08 PM   #51
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Just a little update. I'm one week in and having a hard time. My bowels are extremely irritated by the antibiotics. I had to cut out clofazimine for a little while and just stick to clarithro and rifa. Even so, I am bleeding a lot and my CRP went from less than 1 to 35. I'm getting an iron IV today.

As a result I've had to start prednisone again. I'm doing a low dose of 10mg, and I'm taking DHEA with it. Last year I had to do a different triple therapy to get rid of b. hominis and aeromonas, and within two days of taking abx for it my bowels became so healthy. But this time... I'm not so sure.

I'm giving it the standard 2 weeks to see if it's just die off or I really can't tolerate this therapy. So far I am leaning to the latter. My symptoms are a throw-back to 2 months ago, although I don't seem to be flaring for real. It just seems like major irritation of the mucosa that has barely had a chance to heal.

I'd recommend that anyone starting this therapy who knows they are sensitive to abx should do the ramping up method rather than starting at full dose. Other than my bowels, I have no other intolerance symptoms. No nausea, nothing.
11-09-2017, 01:42 PM   #52
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Conner, thank you so much for your honest update. Information like this is really valuable to me, and I presume, to others following this thread. I am sorry to hear you are having such a hard time. I cross my fingers it is the herx reaction and/or your system adjusting to the antibiotics, and the symptoms will fade. Keep us posted if able, and good luck.
11-09-2017, 08:18 PM   #53
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Irishgal, I wonder if you know why the Greenstein study on 6MP/MTX as MAP inhibitors was not reproduced?
Was it because no one ever tried?
Or was it that others tried but were unable to get the same results?

EDITED/ADDED:
I came across this intersting study about anaerobic adaptation of MAP (from 2017)

The conclusion says:

[...] a number of investigators have demonstrated dose-dependent inhibition of MAP in culture by a number of anti-inflammatory drugs including methotrexate and 6-mercaptopurine [37, 38, 39, 40, 41, 42, 43, 44]. As a result, Greenstein et al. postulated that treatment of patients with inflammatory bowel disease with methotrexate and 6-mercaptopurine may result in inhibition of MAP and secondarily a decrease in pro-inflammatory cytokines [42]. In the current study, testing of anti-inflammatory drugs was beyond the scope of this project. However, future studies are planned which will determine the activity of anti-inflammatory drugs against MAP under both aerobic and anaerobic conditions

I will read up on the refs. 37-44 to see what they say about this matter.

Apart from this observation re. MAP and 6MP/MTS, the article is a very interesting read. The researchers suggest the reason AMAT is unable to clear the MAP infection completely may be that the MAP bacteria can take on an anaerobic state, where the drugs cannot reach the bacteria.

Last edited by OleJ; 11-09-2017 at 09:12 PM.
11-09-2017, 09:34 PM   #54
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Ole - this is a bit of heresay, but I believe it was tried and was not able to be reproduced. Something about the lab equipment used??
11-09-2017, 09:39 PM   #55
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And if you want to watch Dr. Parrish's presentation on her work you mentioned above, about anaerobic adaptation of MAP, it's on the site. She was supposed to present in Philly, but had to cancel at the last minute. However, she kindly recorded her talk with a colleague and provided it to us to post! And they are out of Johns Hopkins.
https://humanpara.org/2017-parrish-video/

MAP is a pretty great mutator. Very hard to kill. This is the type of stuff you see with TB.
11-11-2017, 03:03 AM   #56
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I watched to video with Dr. Perrish, thank you for pointing to that. Very exiting stuff, and I am encouraged to learn experienced microbiologists and TB specialists like her (and Marcel Behr) are doing research on the MAP-CD connection.

Irishgal: Out of curiosity - did your doctor (or yourself) ever consider adding an anaerobically effective antibiotics (metronidazole) to the regimen? I am in no way competent to suggest whether it would be a good idea...

A few thoughts on Methotrexate and the Jarisch-Herxheimer reaction
Then on to an anecdote about myself, which leads me to speculate whether MTX can result in a (small) Jerisch-Herxheimer reaction. So I took a break from MTX monotherapy over the last two month, to see if if my MAP levels would increase. I got CD symptoms, elevated calprotectin, shipped of blood for MAP culturing, and two weeks ago I started MTX again.

Yesterday morning I took my second dose of 12,5mg once a week. I felt weak towards evening time, went to bed early, and woke up at 2:30AM feeling like crap. Low grade fever, nausea, and stomach discomfort. Between 2:30 and 4:30AM I went to the toilet like six times and almost vomited.
That is so strange, I thought. Usually that dose would result in a lack of appetite for half a day or so, maybe some nausea, but definitely nothing like this, and never a sudden onset of diarrhea and urgency.
Interestingly I had a similar reaction, and an really awful night a week ago- the night following the first dose of MTX after restarting.
Last week I did not think much of it, and apart from a truly shitty appx. 24 hours, the following days I felt fine with normal BM's.

But last night, when the symptoms reoccurred, I started speculating about why I got so fierce symptoms from MTX, and I thought of Conner's description of what is possibly a Jerisch- Herxheimer reaction in this thread.

So last night I looked into the Herx reaction, and found the article: Jarisch–Herxheimer reaction: paradoxical worsening of tuberculosis chorioretinitis following initiation of antituberculous therapy

In the article they describe that Prednisolone dampens the symptoms, so at around 4:30 I took 12,5 mg prednisolone.
About an hour later I felt the stomach settle down, and I was able to go to sleep. This morning I feel fine, hungry, and my stomach is calm. It seems I have had quicker resolution of symptoms than last week, where I felt bad the following day too.

Although this is just an anecdote, I can't help but wonder if I am experiencing the Herx reaction because MTX is targeting more live MAP bacteria now that I have been off it for two month.

Last edited by OleJ; 11-11-2017 at 03:34 AM.
11-11-2017, 10:29 PM   #57
irishgal
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Ole - I have actually had great success with flagyl over my 25 years of dealing with CD. It was the only thing that worked really well and I was on and off of it many times. I'd get much better, but then would have to come off and the CD would return. When I started AMAT, I figured it was better than flagyl since none of this research was available at the time. Now, Dr. Borody uses flagyl as a 4th sometime, or it's cousin tinidazole which I think is a safer alternative. Since flagyl causes nerve damage and other side effects, it's not safe for long term use, so if I relapse, a course of that will certainly be in the cards - maybe with clofaz. But I was doing so well at the time, I never thought about adding another antibiotic since I didn't want to mess with success. Still doing well, so no need to add more meds if the current ones are keeping the MAP under control.
11-15-2017, 09:22 AM   #58
BasedJawline
 
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If rifaximin worked for me does that mean the anti map antis will also work?
11-15-2017, 05:26 PM   #59
irishgal
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If rifaximin worked for me does that mean the anti map antis will also work?
Not necessarily. Rifaximin I think is for people with SIBO and IBS. It's in the same family as rifabutin and rifampin, so it could be a clue that you may have a MAP infection, but the best way to know for sure is to send a sample to Otakaro Pathways and get tested. If you come up with MAP, maybe your doc would consider AMAT on the premise that rifaximin worked well. If you've run out of all other therapies, it's an easier sell too.
11-15-2017, 06:38 PM   #60
Crohn2357
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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.
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