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10-08-2017, 07:54 AM   #1
Crohn2357
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Anti-MAP Therapy Support Group

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The Anti-MAP Therapy Support Group.


Some papers on the immunodeficiency hypothesis

Crohn's as an immune deficiency: from apparent paradox to evolving paradigm.
https://www.ncbi.nlm.nih.gov/pubmed/23256761

Disordered macrophage cytokine secretion underlies impaired acute inflammation and bacterial clearance in Crohn's disease
http://jem.rupress.org/content/206/9/1883.full

Revisiting Crohn's disease as a primary immunodeficiency of macrophages
http://jem.rupress.org/content/206/9/1839.full

Is Crohn’s disease due to defective immunity?
http://gut.bmj.com/content/56/1/2?ij...e2=tf_ipsecsha

Defective acute inflammation in Crohn's disease: a clinical investigation
http://www.thelancet.com/journals/la...265-2/fulltext

Neutrophil Dysfunction In Crohn's Disease
http://www.thelancet.com/journals/la...024-2/abstract

Vitamin D, NOD2, autophagy and Crohn’s disease
http://www.tandfonline.com/doi/full/10.1586/eci.10.31

Abnormalities in the handling of intracellular bacteria in Crohn's disease: a link between infectious etiology and host genetic susceptibility.
https://link.springer.com/article/10...005-008-0026-1

Crohn’s disease as an immunodeficiency
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4618314/

Defective innate immunity in inflammatory bowel disease: a Crohn's disease exclusivity?
https://insights.ovid.com/pubmed?pmid=21483259

Is Crohn's disease an immunodeficiency? A hypothesis suggesting possible early events in the pathogenesis of Crohn's disease.
https://www.ncbi.nlm.nih.gov/pubmed/10877227

Crohn's disease: an immune deficiency state.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4568313/

Integrating theories of the etiology of Crohn's disease. On the etiology of Crohn's disease: questioning the hypotheses.
https://www.medscimonit.com/download/index/idArt/445257

The immunopathogenesis of Crohn’s disease: a three-stage model
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4529487/

Mycobacteria in Crohn's disease: A persistent hypothesis
https://insights.ovid.com/pubmed?pmid=17012971

Mycobacteria in Crohn’s disease: how innate immune deficiency may result in chronic inflammation
http://www.tandfonline.com/doi/abs/1...nalCode=ierm20

...

Compiled literature and resources on the MAP hypothesis

http://www.crohnsmapvaccine.com/downloads/

http://www.crohnsmapvaccine.com/map-papers/

https://humanpara.org/crohns-resources-page/

https://humanpara.org/core-research-pack/

https://docs.google.com/viewerng/vie...6.pdf&hl=en_US

http://humanpara.org/news/


RHB-104

http://www.redhillbio.com/rhb-104

Efficacy and Safety of Anti-MAP Therapy in Adult Crohn’s Disease (MAPUS).

Open Label Efficacy and Safety of Anti-MAP (Mycobacterium avium spp. paratuberculosis) Therapy in Adult Crohn’s Disease (MAPUS2).

RedHill Biopharma Accelerates RHB-104 Phase III Study in Crohn’s Disease with Top-Line Results Expected Mid-2018


Crohn's Map Vaccine

http://www.crohnsmapvaccine.com

https://www.facebook.com/crohnsmapvaccine

https://www.youtube.com/channel/UCUJ...tlfYBcw/videos

A Study to Determine the Safety and Immunogenicity of a Candidate MAP Vaccine ChAdOx2 HAV in Healthy Adult Volunteers

---------- / ----------

2017 MAP Conference Presentations

The Consensus from the Mycobacterium avium ssp. paratuberculosis (MAP) Conference 2017

Anti MAP Forums and Groups

Human Paratuberculosis Foundation Facebook Group

Testimonials

Patient Stories

Patient Information Leaflet: Anti-MAP antibiotic therapy for the treatment of Crohn’s Disease

Treatment of Crohn’s Disease using Anti-MAP (AMAT) Therapy

AMAT questions answered by Dr. William M. Chamberlin

MAP Specialists

MAP Doctors and Research Centers Around the Globe

MAP diagnostic test by Otakaro Pathways

https://www.anti-map.org


Videos on Youtube

Crohn's: autoimmune or infectious disease? Public presentation by Marcel Behr.

Prof Borody; Crohn's Interview - Part 1 of 9

Part 1-CROHN M.A.P. by John Hermon Taylor

Patients' stories


Members

BasedJawline, Bufford, Connor, Crohn2357's Avatar Crohn2357, crohnsufferer, Guerrero, Idiom's Avatar Idiom, irishgal's Avatar irishgal, OleJ

Last edited by Crohn2357; 10-08-2017 at 08:21 PM.
10-08-2017, 09:33 AM   #2
OleJ
 
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great initiative
+1
10-08-2017, 07:15 PM   #3
irishgal
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Love it!
__________________
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.
10-09-2017, 11:00 AM   #4
Bufford
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Interesting, and perhaps a glimmer of hope.
10-20-2017, 10:07 AM   #5
Crohn2357
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Macrolides and other antibiotics may cause serious neurological and psychiatric side effects in some people.


The mechanisms involved in macrolide induced psychiatric reactions
are not well established. Several theories have been proposed:
1) drug interactions due to the inhibition of cytochrome
P450 by clarithromycin; 2) accumulation of the active metabolite
14-OH of clarithromycin in the central nervous system; 3)
increased levels of blood cortisol and prostaglandins, hormones
that are associated with mania (6,10,11).
Psychiatric adverse reaction induced by Clarithromycin
http://www.eurannallergyimm.com/cont...118allasp1.pdf

Pharmacovigilance data collected from several European countries show that macrolides can provoke neuropsychological adverse effects such as hallucinations, delirium, manic episodes and sometimes depression, in both adults and children. These effects seem to be rare and are reversible on macrolide withdrawal.
Neuropsychological effects of macrolides
http://english.prescrire.org/en/F87B.../Download.aspx

In the literature, different forms of clinical
symptoms have been described as consequences
of the effect of macrolide antibiotics on the CNS
(mania, psychotic reaction, delirium, nightmares,
psychomotor agitation)6-11. In 1981, Cohen and
Weitz first described two cases of psychiatric
complications in patients who received
erythromycin12. The exact mechanism of the
described side effects is not known. There are
numerous assumptions and explanations that the
active metabolite of erythromycin passes through
the blood-brain barrier and causes imbalance
between GABA-ergic and glutamatergic activities
in favor of the latter13. The literature also mentions
the possible antagonization of GABA A receptors,
protein and pyridoxine synthesis inhibition14, and
an increase in endogenous glucocorticoids in the
CNS15. Thus, in the face of various assumptions,
the mechanism remains unknown. We must bear
in mind that erythromycin is one of the important
inhibitors of cytochromal enzymes in the liver,
possibly also affecting the pharmacokinetics of
other drugs in the body.
Erythromycin-Induced Psychotic Decompensation in a
Patient Affected by Paranoid Schizophrenic Psychosis
http://www.tandfonline.com/doi/pdf/1...20140802124414

The principal side effects of clarithromycin are gastrointestinal; however, less commonly, CNS side effects have been reported, including dizziness, vertigo, anxiety, insomnia, tinnitus, confusion, disorientation, hallucinations, psychosis, and depersonalisation.1 At the time of writing the Committee on Safety of Medicines (CSM)/Medicines Control Agency (MCA) have received 219 reports of suspected clarithromycin induced psychiatric disorders including psychosis (n=5), depersonalisation (n=5), and suicidal ideation (n=4) (CSM, personal communication). It has been postulated that macrolide antibiotics may cause a psychosis-like syndrome via their inhibitory action on glutamatergic neurotransmission in the brain.2 Nevirapine has not been reported to cause serious CNS adverse effects.3
Neuropsychiatric reaction induced by clarithromycin in a patient on highly active antiretroviral therapy (HAART)
http://sti.bmj.com/content/77/4/297

We reported two cases of end-stage renal disease (ESRD) patients who developed hallucinations such as vivid images of worms after taking clarithromycin. Similar to previous case reports of clarithromycin neurotoxicity, the visual hallucination resolved upon cessation of clarithromycin.
Clinical manifestation of macrolide antibiotic toxicity in CKD and dialysis patients
https://academic.oup.com/ckj/article...ide-antibiotic

Although the psychotropic effects of antibiotics are not commonly utilized therapeutically, the commonly associated side effects confirm their potential to influence CNS function. Several antibiotic medications have been known to cause confusion, anxiety and depression and in some instances, psychosis [13]. Although unfavorable in a therapeutic context, these effects are often influenced by age, dosage, blood–brain barrier (BBB) permeability and drug interactions. Research into the mechanisms behind these effects may help to elucidate a therapeutic application. Penicillin for example was known to act on GABA receptors, a mechanism thought to be responsible for many of the side effects [14]. Other classes of antimicrobial compounds, particularly the antimalaria treatment methylene blue and several antituberculosis drugs, have been shown to have monoamine oxidase (MAO) inhibitor (MAOI) properties.
Psychotropic effects of antimicrobials and immune modulation by psychotropics: implications for neuroimmune disorders
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/

Nervous System Effects of Antituberculosis Therapy
https://link.springer.com/article/10...00000000-00000

Adverse effects of macrolide antibacterials.
https://www.ncbi.nlm.nih.gov/pubmed/8280403

Penetration of Drugs through the Blood-Cerebrospinal Fluid/Blood-Brain Barrier for Treatment of Central Nervous System Infections†
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2952976/

Nervous system effects of antituberculosis therapy.
https://www.ncbi.nlm.nih.gov/pubmed/20658798/

Neurological manifestations and toxicities of the antituberculosis drugs. A review.
https://www.ncbi.nlm.nih.gov/pubmed/20658798/

[Adverse effects of antitubercular drugs: epidemiology, mechanisms, and patient management].
https://www.ncbi.nlm.nih.gov/pubmed/17336011

Adverse Effects of Macrolide Antibacterials
https://link.springer.com/article/10...no-access=true
10-20-2017, 10:28 AM   #6
Crohn2357
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Other possible side effects that I remember:

Fatigue, nausea, headaches, bad taste in mouth, dizziness, brain fog, reduced apetite, diarrhea, joint pain, oral candidiasis, c. diff. infection, cardiac arrythmia and hepatoxicity, tendon rupture (Cipro), bacterial resistance to antibiotics.

Last edited by Crohn2357; 10-20-2017 at 06:21 PM.
10-22-2017, 02:55 PM   #7
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Another anecdotal case report of long-term remission induced by anti-MAP treatment.

Summary:
Dr. Lipton struggled with IBD from 1986 until 2004. She had multiple flares, sometimes called Ulcerative Colitis, but finally Crohn’s. One day, as she was resting in bed recovering from a flare that landed her in the hospital, she read a medical magazine and came across an article about a microbial agent, Mycobacterium Avium Paratuberculosis (MAP), and its potential connection to Crohn’s disease in humans.
On 12/10/04 Dr. Lipton began a special antibiotics regimen guided by Dr. Borody. She responded to the treatment well, all her Crohn’s symptoms vanished. She spent 5 years on the antibiotics, ensuring that all the harmful MAP bacteria were eradicated. She decided to stop the antibiotics treatment in 2010, feeling that this allowed plenty of time to assure her sustained wellness. These days, Dr. Lipton continues to be in complete and total remission, without any special diet and without any maintenance medications.
10-22-2017, 04:28 PM   #8
Crohn2357
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Another anecdotal case report of long-term remission induced by anti-MAP treatment.

Summary:
Dr. Lipton struggled with IBD from 1986 until 2004. She had multiple flares, sometimes called Ulcerative Colitis, but finally Crohn’s. One day, as she was resting in bed recovering from a flare that landed her in the hospital, she read a medical magazine and came across an article about a microbial agent, Mycobacterium Avium Paratuberculosis (MAP), and its potential connection to Crohn’s disease in humans.
On 12/10/04 Dr. Lipton began a special antibiotics regimen guided by Dr. Borody. She responded to the treatment well, all her Crohn’s symptoms vanished. She spent 5 years on the antibiotics, ensuring that all the harmful MAP bacteria were eradicated. She decided to stop the antibiotics treatment in 2010, feeling that this allowed plenty of time to assure her sustained wellness. These days, Dr. Lipton continues to be in complete and total remission, without any special diet and without any maintenance medications.
An earlier post from Dr. Lipton:

https://www.psychologytoday.com/blog...crohns-disease

The comments section has some information too.
10-22-2017, 05:14 PM   #9
OleJ
 
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Recently uploaded to YouTube:
a five minutes long profile of Dr. Thomas Borody, who is one of the practitioners administering Anti-MAP therapy from his clinic in Sydney, Australia.
He is one of the few doctors to openly state that he firmly believes CD to be an infectious disease.
Dr. Borody was also behind the development of the triple antibiotics therapy for gastric ulcers, which target the underlying infection by the H. Pylori bacteria.
The treatment is now considered the gold standard for gastric ulcers.

PS. Thank you! Crohn2357 for posting the link to Dr. Lipton's blog page. You are right, both the blog and the comments are an interesting read!

Last edited by OleJ; 10-22-2017 at 05:32 PM.
10-23-2017, 05:39 AM   #10
Guerrero
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Hi guys, have you been donating for the anti-map vaccine?

have you been on some anti map therapy?

Last edited by Lisa; 10-30-2017 at 05:07 AM. Reason: Removed fund raising link
10-23-2017, 11:54 AM   #11
OleJ
 
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Hi Guerrero.
No, to be honest I have not yet donated to the vaccine development. I know I ought to. I did support John Aitken's lab by ordering a MAP blood culture test.
Did you donate?
Also, I have not tried anti-MAP therapy. I am monitoring the news from Redhill about their phase III study, and I am in an almost daily debate with myself whether I should try to find a GI that will prescribe the drugs or not. It's just that no doctor I have ever spoke to seems to think MAP could be causing CD. Also, none have shown real interest in the research. So I would probably have to look abroad (to the UK) and that is just a bit of a mouthful to do.

It would be very interesting to hear from someone currently on the antibiotics!
10-23-2017, 10:27 PM   #12
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Ole - I'm on AMAT and it has changed my life. The antibiotics do work for some people. I have inflammatory markers and colonoscopy results from before and after AMAT. Horrible before, felt like I was pretty close to being hospitalized and barely able to leave my house, to no trace of Crohn's even three years later. The docs call me a miracle responder. After 25 years of this horrible disease, it's like I never had it. My mucosa is healed, and I feel great. Never thought it would happen. So at least for some people, it works. Sometimes it's not as dramatic, but a fair amount reach remission. At least as good as other therapies in my opinion.
10-23-2017, 10:30 PM   #13
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Also Ole - have you seen HumanPara.org? There are other patient stories on there and since I talked to the people and put their stories on the site myself, I know for sure these are real people who have had their life changed by AMAT. It's interesting to see the variety of response to AMAT. Some were quick like me, others took a longer time. I know for some, it doesn't work or they cna't tolerate the meds. Look under the Crohn's tab. I also think RedHill will be very successful. Just waiting for the final data. We're getting close!
10-24-2017, 04:14 PM   #14
OleJ
 
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Thanks, Irisgal for the useful and relevant info. Congratulations with being in complete remission without any of the usual heavy immunosuppresant drugs. That is truly amazing.

I have been in remission on Methotrexate, and five month ago I sent blood to John Aitken's lab and they found viable MAP in my blood. Very low numbers, though, consistent with a patient in remission (which I was at the time). As an experiment, I have tried to quit dairy/beef and taper the MTX.. could it be that avoiding re-exposure to MAP alone would keep me in remission?
Sadly the answer seems to be no. Six weeks without MTX now and the CD symptoms have returned over the last two weeks.
I will now send another blood sample to Aitken, to see if more viable MAP can be found. I hope that can assist the decition whether to try to get on AMAP or not.

Although I have been visiting humanpara.org alot, I had not noticed the patient stories. I am going to read through them with interest.
Cheers.
10-24-2017, 07:57 PM   #15
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Sorry you are flaring Ole. I think it's a lot more than MAP ingestion once the disease triggers. It's trying to control the whole immune cascade. Will be interesting wha your current sample will show as compared to the last one. And I definitely tried all of the conventoinal therapies first (minues 6MP and MTX) but nothing worked. AMAT wasn't so much of a choice as it was the only viable thing left! But I'm glad I did it. Trying to figure out an end game as I've been on for 3 years now. Let me know how you do!
10-25-2017, 05:49 AM   #16
OleJ
 
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Thanks, will do .
Trying to figure out an end game as I've been on for 3 years now.
I take it you already studied Dr. Lipton's case? An article about her reads:
She spent 5 years on the antibiotics, ensuring that all the harmful MAP bacteria were eradicated (this kind of bacteria is a very slow propagator, so the working assumption is that it takes a long time to ensure all traces are eliminated). She decided to stop the antibiotics treatment in 2010, feeling that this allowed plenty of time to assure her sustained wellness.

http://gutharmony.net/index.php/2017...rohns-disease/
10-25-2017, 06:39 AM   #17
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Yes - I've spoken with Dr. Lipton, but I think back then the thought was that you could erradicate it completely. In my long term case, I don't think that's going to be possible, and I'll still be genetically susceptible. My goal is to keep the little I have left in dormancy.
10-27-2017, 12:54 PM   #18
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Update on my getting-to-know-my-MAP-levels-trend quest:

I Fedex'ed two blood samples yesterday. Quite the logistic puzzle, but I'll spare you the details. I emailed the lab, briefly explaining my situation: That I had another test done five month back, positive but with low numbers of MAP (I was in remission at the time). Then, how I had tapered Methotrexate and stopped altogether two month ago, and was now in a (mild) flare.
John Aitken himself replied, and took the time to explain a few things (I am really impressed he did):

He said they see a gradual reduction of plasma levels of MAP in the first six month after AMAT treatment is started, but that it takes alot longer to clear the organisms inside the macrophages.
He also explained that it is the extracellular MAP that cause inflammation, by producing biofilm. Biofilm production is hindered inside the cells. Anti-MAP therapies, he said, reach the extracellular bacteria first because are an easy target. The drugs prevent them from forming biofilm, thus giving a theraptutic effect. The intercellular ones are harder to get.
It seems no matter how long MAP is targeted by antibiotics, some mycobacteria manage to survive. So basically for the last bit he echoes what you write, Irishgirl, that the goal (at the moment) must be to limit the infection to a point where the mycobacteria can not form biofilm (dormancy).

What a bummer that appearently AMAT is not able to clear the MAP infection completely.
Maybe then the Crohns MAP Vaccine is our best bet in the long run, and the antibiotics to be seen as a bridge therapy until JHT and his team hopefully completes stage III with success.

Irishgirl - if AMAT is no longer an option, what other options are you considering?
Could a low dose MTX maybe work? I seem to be in remission on 7.5 - 10 mg / week. Then again- the reason I investigate this is I really want to get off MTX, because of the side effects (nausea, anemia, cancer risk).
Or why not just stay on AMAT? Are you experiencing side effects?

By the way, your story, and the patient stories at HumanPara are really encouraging. I understand you have been a part of making human para, congratulations on a job well done.

Last edited by OleJ; 10-28-2017 at 02:03 AM.
10-27-2017, 02:51 PM   #19
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Traditional therapies, he said, reach the extracellular bacteria which are an easy target. The drugs prevent them from forming biofilm, thus giving a theraptutic effect.
What do you mean by "traditional therapies" and "the drugs"?

I've used mtx injections three years ago. It's a nasty drug; but if it keeps you in remission with a dosage of 7.5 - 10 mg/week, then I think it is not a bad deal. It can save you some time until the Redhill study publishes its results.
10-27-2017, 07:53 PM   #20
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Cytotoxicity of macrolide antibiotics


Influence on Mitochondria and Cytotoxicity of Different Antibiotics Administered in High Concentrations on Primary Human Osteoblasts and Cell Lines▿
http://aac.asm.org/content/51/1/54.full

Cytotoxicity of macrolide antibiotics in a cultured human liver cell line.
https://www.ncbi.nlm.nih.gov/pubmed/8889721

Macrolide Antibiotics Exhibit Cytotoxic Effect under Amino Acid-Depleted Culture Condition by Blocking Autophagy Flux in Head and Neck Squamous Cell Carcinoma Cell Lines
http://journals.plos.org/plosone/art...l.pone.0164529

Mechanisms of Action and Clinical Application of Macrolides as Immunomodulatory Medications
http://cmr.asm.org/content/23/3/590.full
10-28-2017, 02:13 AM   #21
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A) What do you mean by "traditional therapies" and "the drugs"?

B) I've used mtx injections three years ago. It's a nasty drug; but if it keeps you in remission with a dosage of 7.5 - 10 mg/week, then I think it is not a bad deal. It can save you some time until the Redhill study publishes its results.
ad A). both should have referred to anti-MAP therapy. I corrected it in the post.
ad B). my thinking too. I try to look to the next therapy, though, because I have learned the hard way immunosuppressants can fail. I had a really bad kidney infection, likely from anti-TNFa drugs. Those drugs being the only thing doctors suggest, AMAT is probably the only option left for med if MTX fails to work or if I get another opportunistic infection.
What drug(s) are you currently taking, if I may ask?

Re. your links to cytotoxicity of macrolides, can you explain a little more about what that means: what happens if one gets such a reaction, what are the symptoms, and will it reverse if you quit the drugs?

Do you know if rifabutin and clofazimine are also considered macrolides, or it it only clarithomyzin?

Also, do you know if such reactions have been reported with AMAT therapy (such as in the Selby study)?
10-28-2017, 07:23 AM   #22
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OleJ - I've been on AMAT full strength for nearly 3 years, and started getting a slight bit of joint pain which I couldn't determine if it was from the antibiotics or if it was the CD breaking through. My version of CD seems to break through therapies quickly (Remi only made it 6 months) and I ran out of anything approved, so went to AMAT. I was lucky thta stopped it cold, but I'm under no illusion that eventually the disease will figure a way around even AMAT. The only way to puzzle out the joint pain was to stop AMAT - a scary prospect after 3 years of being better!

I talked to my docs, and they all thought it was safe to pulse one week on, one off. Last week I stopped the antibiotics completely, promptly caught my husband's upper respiratory infection, and was miserable all week, but no GI pain, no CD symptoms, and the joint pain almost entirely went away. So it looks to be the meds giving me joint issues, and I wonder if that will continue with the every other week system. I had both CD caused joint pain prior to AMAT, and also bad joint issues when I was on levofloxicin as part of AMAT. I dropped the levo, and am only on clarithro and rifampin now, plus low dose naltrexone. I also daded some supplements, including a spore forming probiotic called MegaSporeBiotic and have started 8 hour intermittant fasting. I'm back on AMAT full strength as of today for a week. We'll see how it goes,but I'm hoping this could be a nice compromise to keep my dormant MAP in check while also minimizing AMAT side effects. Other than the joint pain now and the initial flu-like symptoms, I have had no other side effects on AMAT.

It's all about balance, and buying time for me. I think some cool therapies will be coming. RedHill is a great option, plus Qu with their SSI looks interesting. If we could get the Dietzia and EpiBro research going, they may pan out as well. Plus, there's a lot of dietary and natural options being looked into that could support immune health. I doubt I'd ever try MTX. It would feel like going backwards to me. I don't think the immunosuppressants are very effective, and am nervous about the side effects of that one in particular. A course of prednisone is what I may fall back to if needed.

Glad you like Human Para. I try. I just wnat to provide the resources for people that I had to hunt so hard for initially, and it's ballooned into a platform for all sorts of different research groups around the world. Many positive things coming out of that effort, and it's a great team. Hoping to start funding research VERY soon. Lots of legal junk to wade through in running a non-profit, but the MAP and other pathogenic research is the most promising stuff I see out there for CD, along with therapies that will rehab the broken immune system. We'll kick CD eventually! I'd rather it be sooner than later.

Let me know how you do with your testing. :-)
10-28-2017, 08:08 AM   #23
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OleJ, I am on 6mp.

Keep in mind that I have no medical training; I am researching this stuff because I may use the anti-MAP antibiotics in the near future. I wouldn't mind the short term effects of the antibiotics because in that case the benefits generally outweigh the risks; but I am not sure how the antibiotics would affect me in the long term.

Different cytotoxic agents may exert cytotoxicity through different mechanisms.

The side effects depend on the dosage and the individual. They don't have to be acute reactions, just taking a drug that has cytotoxic effects is problematic on its own. Again, I wouldn't mind it on a short period of time, like we use them to treat common infections; but how these affect you in the long term is what I wonder. Because, AFAIK, there aren't a great knowledge on the long term effects of these.

Clarithromycin is a macrolide antibiotic. The other two are part of the drugs called antimycobacterials.

I haven't read the full text of the Selby study, so I do not know the details of it.
10-28-2017, 08:57 AM   #24
OleJ
 
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Crohn2357: Thanks for clearing that up. I have no medical training either, and ultimately I would leave decisions such as therapeautic effects vs. side effects to the GI, should I go forward and try to get on AMAT. At least you tolerate 6MP, that's a good thing. (I didn't).

Irishgirl: Thanks for the honest update. I really hope the weekly on/off cycle will give you both pain relief and remission. Let us know how you do. Yeah, it seems something in CD research is about to pay off. Now it's on to reading about the Dietzia and EpiBro research you mention, both are new words to me
10-28-2017, 02:59 PM   #25
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Hi everyone, I'm new here, but not new to this subject. I was asked to join this forum so I could post my MAP story here.

I have ulcerative colitis, not crohn's, so my experience may or may not be relevant to others. My UC has been refractory to all modern drugs. The only other drug I am taking that has good result is Low Dose Naltrexone. My GI doctor has me on Entyvio and it only sort of works. If AMAT helps me more, I will stop Entyvio because its long-term side effects are gnarly.

MAP was identified in my blood by blood culture in August 2017. I will be starting the AMAT protocol on November 1st 2017, consisting of: clarithromycin 250mg TID, rifampin 300mg BID, clofazimine 100mg QID

All of the scare research in this thread about the effects of the antibiotics are kind of inappropriate, in my opinion. If you look at the list of side effects of all the commonly accepted IBD drugs, the list is very large. Treating IBD in general carries some danger, but the disease is worse. I would rather risk side effects than have my bowel removed.

Most of the macrolide side effects are dependent on your individual metabolism. If you tend to do poorly on modern drugs in general, then you are more likely going to experience intolerance symptoms. The other issue is the modern research does not adequately differentiate between true intolerance and die off symptoms. A lot of people really suffer in the first 3 days - 1 month of AMAT therapy and it's because their body's flora are going through massive shifts in the presence of these antibiotics, not to mention the primary pathogen itself dying off. If you have no other maintenance protocols in your life like diet, probiotics, herbal medicines, etc... then you will probably suffer more. I would not do AMAT on its own with no other support.

You can titrate your dosages upwards, starting at a small dose, or you can start at full dose. The former is usually recommended. If titrating and giving it some time does not lead to improvement, then these medicines may not be for you.

The rare side effects stated in this thread almost never happen, and are usually accompanied by other effects first. If you have any body awareness whatsoever you're going to abandon ship before something crazy happens. You can do all the scary research you want and take it into account, but at some point you're going to have to accept the unknown and try the meds if you want to have a hope of getting better.

I refuse to let them to take my bowel just because they are too ignorant to really treat this disease. I won't do it. I respect other people's choices so don't take it personally. But I have witnessed so much terrible incompetence in the treatment of IBD that I can hardly endure another moment of it. Maybe I just live in a bad part of the world for treating IBD, but it is worth finding an alternative cure just to get away from these sociopaths.

My GI wants nothing to do with the AMAT protocol. Luckily I have an understanding GP who will do it for me. Even so, I am basically doing a self-directed treatment here because the medical system is totally oblivious to the work of Borody and Chamberlin. All my main supports come from the AMAT community online. There are a few doctors in the world who can give us some guiding advice, but we are really on our own. We don't need to see hundreds of scary research studies on macrolides, thank you. We are pioneers in IBD treatment -- we know that we're off the grid and that you don't support us. But nothing will stop me from trying this, nothing. I have a proven infectious disease in my body and the fact that modern doctors won't look at it is, to me, a cardinal sin. I want it out of me.

The more people who try this and get better, the more we can finally start helping people. Colostomies and resections can be a thing of the past. It seems like every major breakthrough in the way we approach disease comes from outsiders who were shunned but took the risk anyway.
10-28-2017, 04:40 PM   #26
OleJ
 
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Thank you for joining Conner, and for sharing your story, your thoughts, and your research.
It's a good point that the list of side effect alone should not necessarily disqualify trying AMAT, but at least for my part being followed by someone who knows what he/she is doing would definately be reassuring if I am to start. As you write, it is a matter of personal preference. To be fair, I don't think it is Crohn2357's agenda to do scare us all, my guess is he just wants as much as possible on the table.

I second your observation on GI's. For a year I have tried to get my GI to at least read the re-analysis of the Selby study, and see the informative lecture from Dr. Behr, but he never did it. He did agree to confer with GI colleagues at another hospital regarding my positive MAP test. Only I never heard from him, and when I went to the hospital to have blood drawn for another test, the GI nurse told me he has quit. So at the moment I am without a GI, with the prospect of getting a new one who most likely has not read any of the recent publications on the link between IBD and MAP.

For those of us who are seriously considering AMAT, updates on how you do going forward will be appriciated. Lastly, I could imagine there are UC patients out there who would also be interested to hear if this can have an effect given your diagnosis.
10-28-2017, 06:48 PM   #27
Connor
 
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I was going to post a link to a study about MAP and UC but I can't post it until I've made 10 posts or more. Weird policy, but OK.

I've heard from some AMAT doctors and Crohn's patients that UC is caused by something else and that MAP theory is not the focus. But then I have come across UC patients who have used AMAT to achieve remission, and I have read studies like the one I was about to post that link MAP to UC.

Bottom line... there is MAP in my system and my UC is not responding to treatment, so I might as well try this. It's suspected that UC patients were infected later in life or with a smaller concentration, whereas Crohn's patients had a higher loading dose of mycobacteria or they were infected as children.

My blood culture shows my MAP concentration is small compared to the Crohn's patients I've talked to. My body is very clean, I live a very organic lifestyle and I am sensitive to contamination across the board. It may be that even a small number of these organisms were enough to make my body flip out. I ate whatever I wanted and lead a normal life until I was 29 and then all hell broke loose. I spent 2 years living in Asia and got very sick many times there, so for me the infectious connection is obvious.

In cattle, young calves are infected by their mother's milk, but they don't develop Johne's disease (the cow equivalent of Crohn's) until adulthood, so there is a delayed reaction. Same as in humans. The main distinguishing features between human and cattle versions is that in cattle, we can find MAP in bowel biopsies but in humans it's not observable in the bowel tissue itself. It may be in our lymph tissue and blood instead, things that the bowel is rich in.

Either way, with a remission rate of higher than 50%, AMAT therapy is still proving to be better than all the crappy immunosupressive drugs they have us on. I guess AMAT therapy is not as profitable compared to the tens of thousands (sometimes hundreds of thousands) of dollars people spend on immune suppression for IBD every year.

The key factor is that MAP is everywhere. It's in water, soil and air. Everyone alive on planet earth comes into contact with it, but not usually in significant numbers, nor do they develop any kinds of symptoms. So there may be an immune deficiency component that allows us to get infected. I know for myself I was immune compromised the entire time I lived in Asia, with constant GI distress. It's possible that allowed MAP to take hold.
10-28-2017, 06:52 PM   #28
Connor
 
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P.S. Sorry if I got a little short about the "danger" studies. I have been researching the ins and out of this topic for 6 months or so. I have a scientific background. Despite all this research, I still feel unprepared to start taking the medication. If more doctors were doing this, there would be more clinical experience to rely upon. Instead all I have to go on is research and the stories of other patients who have done AMAT.

At some point you have to take that leap of faith and dive into the unknown. All the research in the world can't tell you what your body is going to do, nor can it predict biological systems perfectly. Our knowledge of the body and disease is still very imperfect.

I take the plunge in just a few days. I will post my progress, though maybe not at first. The blow by blow might scare people. I expect at least the first week to not be very fun.
10-28-2017, 10:28 PM   #29
irishgal
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I agree Connor - it especially irks me when mpthe mainstream GI community dismisses the risks of biologics (like untreatable Tcell cancer!) but freaks out when I'm going to take antibiotics that have been used for decades in millions of patients. I think for normal people, with healthy gut flora, antibiotics can be VERY bad. I think we're only figuring out how bad thta is now, and even at low levels in food they are bad. But for CD (and maybe UC patients) our flora is junk. It's hurting us. So antibiotics give us relief and stop whatever is destroying us. It's hard to know exactly what role the microbiome plays alongside MAP. We just need more research to answer some of the critical questions, but as you mention, treating IBD is a risk analysis. Uncontrolled disease and inflammation is probably worse than the side effects of any treatment, and I wish the docs wouldn't get so comfortable with the biologics. It's like they've been brainwashed by BigPharma and it's been beaten into normalcy due to the pervasiveness of these treatments at seminars. Side effects have been minimized.

For me, I was sick with colds and viruses constantly while on biologics. The printed material on both Remi and Humira clearly state that's a big deal, and to tell your doc. I'd do that, and they'd just tell me I have a cold. It was no big deal. But I got multiple rounds of sinus infections and bronchitis. It didn't even phase them. I quit telling them. Plus, it did nothing for my CD. AMAT is absolutely a viable treatment, and I'm hoping RedHill will prove that once and for all. Good luck with your journey! I don't envy you those first few weeks.
10-29-2017, 08:32 AM   #30
Crohn2357
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If you think the only negative effect of antibiotics worth considering is their ability to manipulate your microbiome, then you need to read and think a lot.

“People almost invariably arrive at their beliefs not on the basis of proof but on the basis of what they find attractive.”
― Blaise Pascal

If you want to make a proper risk analysis, you need to study the risks.

Being reactive to questioning has always been a sign of stupidity. I have no motives to change yours, so I will not give any further replies to your comments.

Last edited by Crohn2357; 10-29-2017 at 08:55 AM.
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