Anti-MAP treatment works! Questions about Rife machine and fecal transplant

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Crohn's girl

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Hi everyone. My name is Jenny and I'm a crohn's patient living in Minneapolis MN. I'm 34 years old and was diagnosed at age 18. After failing all conventional treatments I opted to get treated for Mycobacterium Avium Paratuburculosis in 2008 after a bad flare which left me hospitalized.

This decision followed a lot of research. I even attended the International Colloquium on MAP which took place at the U of M veternary school just a couple months after I was released from the hospital. I was able to talk with lead researchers and ask a lot of questions. I had also compared MAP research to the research on the biologics and decided I'd rather keep biologics at bay as long as possible.

Once I started MAP I was able to wean off two steroids (Entocort and Prednisilone) over the period of a year. I had tried to wean off steroids twice before but never got below 2/3rds of the dose I was trying to wean from.
I had horrible adverse reactions to the steroids including severe joint pain (athralgias) and really bad adrenal fatigue from withdrawl. It was simply put, a nightmare.

The triple antibiotic regimen has held me in remission since 2008. I have also been able to take breaks from the meds for up to 6 months and took it every other month for awhile too. I end up returning to the meds b/c at some point without them, symptoms start to return. I believe this is because MAP is about the hardest kind of bactera to treat (it can shed it's own cell wall). There is also some speculation that eating grains/sugar while on the antibiotics is counterproductive b/c while you are killing the bacteria with the meds they are also using sugars to multiply.

I cont. to be off and on the antibiotics with no sx. I am however, interested in finding a new treatment at this point b/c I feel the antibiotics are starting to become difficult to tolerate. I'm specifically interested in finding out if anyone on the forum has used Rife technology or fecal transplants with success?

Thanks,
Jenny
 
Hello Jenny welcome to the forum!
I have not heard of this form of treatment, and I am very interested to learn more about it, thanks for sharing your story. Its one of the many benefits of this site, learning from others.
I am very pleased to hear that for the most part you have been able to keep your disease at bay, it really is a huge feat, congratulations!! I know there is some members on here that talk about fecal transplant, I just can't think of anyone specific at the moment, but I will keep an eye out.
Thanks again for sharing and welcome, I look forward to learning more of your journey!
 
Hi Jenny,

I'm very interested in the anti-MAP treatment and it's great to hear from someone who has had success with it. What combination of antibiotics have you been using?

I'm afraid I have no experience with fecal transplant and haven't heard of Rife technology but would like to wish you continued success!

Sarah
 
I know there's a massive phase 3 trial ATM regarding anti MAP meds, glad to hear your story, have you had any silent side effects from the anti biotic use? Also if I may ask, did you do any tests to find out that you had MAP?
 
Joshua,

I did not test for it b/c at the time I needed it in 2008, no tests were available outside of the studies. A test has now been developed that is much easier and quicker to detect MAP. There might be 2 diff. tests available b/c I've seen 2 different names linked to it. If you google "crohn's and PARA" there is a link to an article on the test at the top of the page.

I went into it thinking it was a long shot but after seeing how my body reacted to the medication (getting off all steroids, clean colonoscopies after never having a clean one, and lastly each time I go back on the meds all my symptoms disappear). After 2 years of continued treatement I did an every other month regimen for a year and I have also recently taken a 6 month break from them...to give my body a break. I heard the every other month regimen was effective for some by a GI doc. William Chambrlin in TX who often treats with anti-map therapy.

continual side effects include: 1. funny taste in mouth at times during the day from Clarithromycin 2. A really really awesome tan from the Clofozamine (goes away after stopping the med) 3. yeast infections off and on from unbalanced flora (I avoid dairy so haven't been doing yogurt but am going to start making my own probiotic coconut milk yogurt now)

This year I had some mild nause and burping start and I am suspicious about the abx interacting with another supplement I'm on or just taking their toll on my stomach.

Some people can have transient joint pains or flu like sx when they start the meds (per the research) The flu sx are from the bacteria dying off, like the Herx reaction with Lyme's. I never had this.

You can go to youtube and watch Dr. Thomas Borody being interviewed on this. I think there are 9 or 10 parts on there. There's also a patient on there for part of the time who has been on the meds 10 years.

I never regret doing this treatment as I feel I have been convinced beyond a shadow of a doubt this is a bug!!!

If you decide you want to try it, your regular GI doc will probably think you are crazy. I lost my GI doc b/c I wouldn't go on Remicade. I was treated by an internist/functional medicine doctor and found a new GI doc with a more open mind who has been supportive but not managed the antibiotics directly.

The recent start in low grade nause is my reason for looking into other treatments now. I know a woman who did the treatment for 5 yerars and now her disease is completely gone, but this is rare. Her name is Judith Lipton and she has a blog. I think she may live in Costa Rica now...a psychiatrist I think. She's very easy to write to and hear back from.

Good Luck!
 
That's amazing news! I also feel a little vindicated for having suspicions that my course of antibiotics was what triggered my IBD in the first place -- killing all the friendly local organisms, of course that'll make it a more hospitable environment for the organisms the drugs don't kill!

I've actually gone a month without the mesalazine myself, and I'm still okay. The sugar theory's interesting to me; I wasn't aware of that, but I've made my diet a lot more protein focussed than sugar focussed and I haven't had so much as a blip on my radar since going drug free -- bear in mind that just a couple of months ago I was experiencing tonnes of variation even on the meds.

(Disclaimer -- stopping my meds wasn't a decision I made so much as accidental non-compliance. I never would've taken this into my own hands like this on purpose.)

I really hope you carry on having success with your treatment! Touch wood.
 
The question the on/off method of treatment raises for me is... wouldn't this increase the chance of an anti-biotic resistant strain of MAP developing? Anyone out there with any expertise in this area? Would welcome some input on this, is this a genuine concern?
 
Actually Kev I think the on/off method is used to reduce the rates of resistance compared to continuous treatment with antibiotics. I was treated for SIBO using an on/off antibiotic regime and I was told that they do it this way as continuous treatment is more likely to lead to resistance. I may be wrong, but that's what my doctor told me.
 
It is often referred to as pulsing antibiotics. This method is sometimes used on treating Lyme Disease as the spirochete can go into a dormant form with continuous antibiotic use. Probably used in this case to prevent resistance as pathogens often have the ability to mutate to a resistant form to a specific treatment.

Sometimes antibiotics are also rotated to prevent the problem.

Dan
 
I think the use of multiple antibiotics is to counter resistance. So if one in a million bacteria mutate to evade one antibiotic it should be mopped up by the others. The chance of a mutation allowing evasion of three antibiotics, for example, would be 1/1000000 cubed. Very small indeed.
 
And who said you can't teach an old dawg new tricks? Very interesting stuff. It makes a certain ... pathetic... sense that your typical doctor/GI doesn't try this route to 'cure' a patient of IBD. But I'm surprised that some... doctors.. out there haven't heralded it as a 'cure' for IBD... if you come to their private clinics and pay thru the nose for it. You know what I mean? For instance, if I went with a certain biologic treatment, I would pay $40 - 60 k a year... after year, after year.. Whereas, if an enterprising physician or group offered me varying courses of pulsing anti-biotics for a .. 2 year period.. it may kill off any MAP within me.. and cure my IBD once and for all... for a paltry $100k. Just a hypothetical scenario... and it would only appeal to those with deep pockets or resources... but it does present a viable business case for the doctors. The biologic method makes big pharma rich... not them. With anti biotic treatment, aside from the cost of the a/b's, the doctors would pocket the rest. Some success stories, some smart advertising, and it would be like a world wide license to print money. Am I right?

I mean, if money were no object, and someone offered you a 'cure' for your IBD, just how much would you be willing to pay?
 
I guess that's true Kev, but it could also put doctors out of a job. With no IBD patients to treat the would need far fewer GI's...they'd be shooting themselves in the foot to offer us a cure.
 
Well, perhaps things are different there... but here, the number of people needing GI's is on the rise... but the number of GI's is declining... steadily, consistently, dramatically. It isn't a glamourous... medical career.. to begin with... subject to all the bad puns and off colour jokes you can think of... and... more often than not, they only have bad news for their patients. My GP is carrying over 2,000 patients... and that was a rough total a few years back... I hardly think 1st year med students are queueing up to become new GI's. Would all those interested in becoming GI's please raise your... nah, just forget it.

Apologies to all who think I'm being fascetious... but I picture some opportunistic docs out there (and their motives don't matter.. if the method works, who cares, right?) who could make money out of this... AND start decreasing the number of people with IBD. If the odds of having IBD are 1|200, or 1|300, and there are 6 billion people in the world..
and you could make $100,000.00 per patient... with a potential patient base in the hundreds of thousands, or even millions... Would you take out a 2nd mortgage for a cure? I figure there is a better chance of a 'for profit' group offering folks a shot at this treatment versus... say a not for profit charitable group offering it out of compassion.
 
Sorry to hijack your thread Crohn's girl!

Kev, I think I was being a bit unfair. I'm sure there would be a lot of GI's who would truly want to offer us a cure if one was discovered. My doctors are really passionate, they see the suffering and the frustration when you have to choose between the different poisons and then they don't work anyway. Like you say, if they could charge thousands per patient it wouldn't matter if they put themselves out of a job anyway, they'd have plenty to live a more than comfortable life. Plus they could put their skills to use in another area of medicine. I just hope that one day it becomes reality. I can't imagine life without Crohn's but I definitely wouldn't turn down the opportunity of a cure!
 
I don't know whether you are being unfair or not. I think maybe I'm being too callous, or jaundiced, in my viewpoint. But, I think there is a potential for this 'clinic for cash cure' which could bring this treatment from hypothesis/study into reality. If you have the cash. I 'read' that Demi Moore spent $250,000.00 for cosmetic surgery before she did the 'Charlies Angels' movie. A lady I dated briefly (very briefly) wondered whether I'd be inclined to help her raise $20,000.00 for implants... Dental implants, but still implants. Its all a matter of priorities... perspective.. AND whether you'd gamble that much on a 'cure' (with no guarrantees) or opt for spending that much or more over time on traditional meds (also with no guarrantees). Me? I would gamble on the cure.. if I had the bucks.
 
Can anyone share the name of a physician in the US that is willing to prescribe the anti-MAP therapy?

Miss Stitch

Crohns diagnosis 1993, currently taking predinisone, Remicade, Asacol. Looking for alternatives
 
Dr. William Chambrlin has treated his patients this way. I met him at an Anti-MAP conference at the U of M in 2009. He was practicing in TX then, but I'm not sure now. His e-mail is [email protected]

I am treated by Dr. Chris Foley at MN Nautural Medicine. He would prescribe it for you. He's an internist. I believe Chambrlin is a GI doc.

I am doing well. Am still on and off the triple abx therapy. I've had some gastritis most likely caused by the abx at this point so now I'm on Nexium. However, my GI specialist thinks this is the lesser of two evils with regard to staying away from the biologics. Every time I go back on the abx they work like a charm, all sx completely disappear. For anyone interested, the Mayo clinic is dong a phase III clinical trial on them right now. I think the drug is still called "Myoconda" and is now owned by RedHill Biopharma. We will see this come to market. Just watch. Let me know if you go ahead with the treatment how you respond.

Jenny
 
It is known that MAP is difficult to impossible to eliminate with antibiotics, although it can be controlled this way. There are four pathogens involved with my Crohn's from results of my own Rife frequency treatments.

H-Pylori.
A strain of E-Coli, not sure what strain.
MAP.
Mycoplasma Pneumonia.

From my experience, at least three of these appear to be easily either greatly reduced or eliminated using frequency treatments. I had difficulty with E-Coli but there is another way to reduce this.

I would speculate that there may be more pathogens involved, since it originally is an immune system problem. The above seem to be often involved based on mainstream research.

Dan
 
The biggest problem with this treatment is that it is very specific. You need to know precisely which pathogen to target. I had treated for everything but except mycoplasma Pnuemonia and ended up with fistulas.

Never had fistulas in all the years I had Crohn's. Completely clean except granulomas in the ileum. I get a bout of Pneumonia and did not get rid of it completely. Don't think anything of it and quickly nose dive with fistulas.

Completly healthy prior to that episode.
Work 42 hours a week and at our own business on days off. Not many people with Crohns can do that. I am not a young man either.

Each pathogen, in itself, plays a role in my Crohns. When it is eliminated, symptoms leave with it and health improves.

Burning Stomach pain. Nothing relieves it. Try various acid blockers, try various frequencies for pathogens. Nothing helps. Finally run frequencies for H-pylori, immediate relief but only lasts about 16 hours. Run one H-Pylori frequency of 676 Hz for ten minutes a day for six days. No more stomach pain to this day. That was several years ago.

Had nagging pain on Illium area. Frequency treatment for E-Coli makes it worse for about a day. Try this several times with the same results. Use chemical treatment known to kill E-Coli. Pain goes away. Run same E-Coli frequency treatment. No reaction. Try it several more times, no reaction. Pain never returns.

No particular symptoms, or so I thought, concerning the MAP bacteria. It is thought to be a factor in Crohns so I try kill it using Tuberculosis frequencies and frequencies mathematically calculated to affect it based on its genetic sequencing. No noticeable affect on intestines but patch of Psoriasis disappears within a week. Never has came back since.

Last couple of weeks. Cutting firewood. Extremely tired and sleeping longer than I usually do. Also occasional blood in stool. Know something is wrong, but not sure what. Cough up some thick plhegm. Finally fingered out it is pneumonia again. In spite of IV and oral antibiotics and two rounds of Zithromax after last flare with fistulas the mycoplasma remains.

Have been slightly flared since surgery but don't know why. Have been using Cholestyramine to control over active bowel as I had illiocal valve removed and the slight flare. Cannot go a day without Cholestyramine. I try many times.

I am really scared of Myco Pneumonia because it did more damage in a few months than anything previous. I run frequencies for this for two and a half hours on the spot. I have just taken Cholestyramine so should be good all night. The stuff works good. I am up two or three times during the night running for the bathroom. This goes on for half the next day, then clears up.

Two days later I stop taking the Cholestryramine. I now can go all day without it and do not have the cramping that made it very risky to go without. I worked a twelve hour shift last night and never went to the bathroom for a BM. I now can get along without it. Tiredness went away, phlegm went away and I continue to treat this as it is so destructive.

So I have four coincidences concerning Crohns or this has worked four times.

You can add in my wife's total recovery from Lyme Disease and coinfections to the mix. I am an admin at a private Facebook site to help hopeless cases of people with Lyme Disease using this method. Many are recovering nicely.

I admit that I know a lot more about Lyme Disease than Crohns, but I knew little about either until I took them on directly.

I do not know of another method as effective as this. If I did, I would be using it. That's based on seven years of experience.

I am either the luckiest person on earth, or it works.

Dan
 
Hi Jenny,

It's fantastic to hear you have done well on anti-MAP Therapy. I too have done extremely well on it after everything else failed, it has been a life-saver. Prof Borody treated me here in Sydney. I am putting my story on YouTube in the hope people find out about it because the success rates are quite high. Can you do me a favour.....are you able to send me a photo of you looking well and I will include it in my video???

[email protected]

Phil
 
Philn said:
Hi Jenny,

It's fantastic to hear you have done well on anti-MAP Therapy. I too have done extremely well on it after everything else failed, it has been a life-saver. Prof Borody treated me here in Sydney. I am putting my story on YouTube in the hope people find out about it because the success rates are quite high. Can you do me a favour.....are you able to send me a photo of you looking well and I will include it in my video???

[email protected]

Phil
Click to expand...

Hi phil, I'm in qld, that's awesome the anti-map is working for you, may I ask if you have colonic crohns or in the ileum? And also have you gone into histological remission?
 
Hi Joshuaaa, I have colonic crohns, inflammation was right through large intestine. I've had to check exactly what the doc initially said about my small intestine: "inflammation extending from proximal jejunum to distal ileum, ulceration oedema and erythema distal ileum." My terminal ileum has never had any inflammation. I remember Prof Borody saying something about patients who have inflammation in T.ileum tend to do better on anti-MAP than those without inflammation in the T.ileum??? Not quite in remission but I was very sick and have improved enormously -> 90% there.
 
That's awesome to hear you've done well to get better, how long have you been on it? Iv been thinking about making the trip down to see Borody, he takes so long to get into though, I'd have to book in for a scope... Do you hav symptoms ATM, also how are you doing in regard to side effects?
 
I've been on it about 2 years....but most of the improvement came in the first 6 months and then I've slowly been improving but kind of hit a plateau now, but I was quite bad/housebound etc. Some symptoms still persisting. They've recently changed some stuff to try to get me over the line. Borody is booked out for over a year but you can see any of the GIs at the clinic...they all work under him and provide the treatment. I have never waited more than about 2-3 months for an appointment and they schedule harder to fix patients appropriately. Basically zero side effects - some arthralgia for the first 6 months but it was only just noticeable (like if I banged my elbow it would hurt more than it should, if you know what I mean), slight urine colour change and I'm supposed to get a tan but it's still on its way. The med is very well tolerated, there are some potentially bad side effects associated with them but they are very rare. If you're not happy with where you are atm I would recommend you try it.
 
Hello crohn's girl!!

I started this thread on fecal transplant's- http://www.crohnsforum.com/showthread.php?t=52400 , and there is a section titled testimonies, with 3 testimonies included. also, there are more testomonies in the first section titled general info at the very bottom in a link to an article written by another member on this site screen name KSS.


if you werent already aware of borodys study of FMT in UC, the six patients are considered to be cured from the fecal transplant.
just recently there was a report of a dramatic improvement using fecal transplant in severe crohns, in addition to the older studies which can also be found in the fecal transplant thread. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3819561/

also, there are 8 more studies to be completed in the next 2 years.
please refer to the thread for more info.
 
Hey everyone,

this certainly sounds promising. I understand the Dr. Borody is doing a lot of research on FMT. I have a couple of questoins...first, I see that it's "cured" people of UC, but what about people with Crohn's? I see peoples symptoms have improved but has he "cured" anyone with Crohn's?

Also, how do people find doctors who do FMT? As I live in the U.S. I clearly won't be able to go to Dr. Borody's clinic.....any idea who does this locally?
 
Michelle,

People that do this treatment usually do it from home, unless you find a way to get involved in a clinical trial. You can google for numerous methods of homemade FMT infusion, but I think the powerofpoop.com should provide a good starting place. I am contemplating it myself, but since I have crohn's in the terminal ileum, I am uncertain of the efficacy of this treatment for me. Nonetheless I would like to try it.
 
Miss Stitch said:
Can anyone share the name of a physician in the US that is willing to prescribe the anti-MAP therapy?

Miss Stitch

Crohns diagnosis 1993, currently taking predinisone, Remicade, Asacol. Looking for alternatives
Click to expand...

I just found this thread on the forum. I am not sure if you are still looking for a physician to prescribe anti-MAP therapy. My son is being treated with anti_MAP by Dr. William Chamberlin. Dr. Chamberlin is now in Billings, Montana at St Vincent's Healthcare. 406-238-6399.
 
Hi Joshuaaa. My son has been on the anti-map treatment for 13 months. He is doing much better than when he started treatment, but he is not in remission. His CRP has gone from 66 to 16. His bleeding has stopped. His pain and BM's have decreased. During the first couple weeks of treatment he had severe fatigue, joint pain, and overall malaise, but otherwise has tolerated the treatment very well. He will be on the antibiotics for another 1-2 years.
 
Thx for the response, I hope he finds remission soon, do you do any dietary limitations like paleo or scd for him?
 
Hi lkelley, I have had some success w the diet but not enough to put me in remission, more so just manage symptoms, just wondering how you know your sons not in remission yet, via scope? Or just symptom wise, good sign that he's not bleeding and eats what he likes :) I hope he finds remission soon.

Thx for your response
 
Hi Joshuaaa. Thanks for the input re diet. No, my son has not had a recent scope. The doctor who prescribed antiMAP treatment is out of state. My son's local GI is opposed to antiMAP treatment, so my son (age 23) has not seen him recently. His BM's are still liquid or semi formed and multiple times per day (much reduced from before treatment though). He is not having any more bleeding. His CRP was 66 before treatment. Lab work last week shows CRP at 4.5, the best it's been in 2 years!
 
Thanks again for the response, I'm
Glad his crp is better, I recommend getting a cal protectin test done, it's a stool test which accurately shows how much intestinal inflammation there is going on.. Might well be worth it if his stool is mainly liquid, another recommendation would be to try the scd diet for a 2-3 weeks, see if that firms things up.

Does he have any stomach pain?

Thx again
 
Any updates from the Anti-map treatment? I contacted Dr. Chamberlain and may try to get the Rx to start the treatment.

Was thinking about doing the Phase III CT from RedHill but didn't want the placebo.
 
Matt T said:
Any updates from the Anti-map treatment? I contacted Dr. Chamberlain and may try to get the Rx to start the treatment.

Was thinking about doing the Phase III CT from RedHill but didn't want the placebo.
Click to expand...

Hi Matt,

I don't have any update on the RedHill trial, just wanted to mention that I just met with Dr. C a few weeks ago and am on week three of clarithromycin, rifampin and ethambutol. I didn't have any start-up symptoms, although the past two days have been quite rough with cramping and an overall "weird" feeling. I also have SIBO and a lot of issues with food, so I'm not sure if I'm reacting to the abx or something I'm eating. I don't have any active disease at the moment, as I just had surgery in April. I also have an ileostomy.

I'm not at all thrilled with the idea of taking these abx, especially since my gut is already in bad shape with the SIBO. I blame lots of abx early in life on that, so it's a tough pill to swallow (pun intended ;) ). In any event, I'm sending you tons of light for your decision making and next steps in your journey! There are two good groups on FB regarding anti-MAP, if you're on there.
 
D Bergy said:
I have done MAP treatments using DNA based frequencies with a Rife type frequency device. I sent you a PM.

Dan
Click to expand...

Hi Dan - I would love to learn more about this. I read your comment below discussing the bacteria you target(ed) and you have so much knowledge and experience that I'd love to tap into. I'm familiar with rife machines, but only in name from my Lyme friends. Would you be so kind as to send me some info? Thank you!
 
Hello Tara

I answered the PM but posted the info here also.

I am doing well, just getting old too fast. I didn't have any luck with the medications I tried, but I guess they bought me enough time to figure out what caused a majority of my symptoms.

The Rife machine wasn't new to myself as I had been treating my wife's Lyme Disease and coinfections for a few years prior to my diagnosis. She is much better now also.

The machine can be real effective providing you know precisely what to target. That's the weakness and strength of the method. I can most likely reduce or eliminate most pathogens without killing off anything else. But, finding them is challenging.

I have found four that caused most of my symptoms. MAP is one of them, but I had a crap load of H-pylori and mycoplasma pneumonia also along with E-Coli of some strain.

Basically, the machine puts out a frequency that resonates with the particular pathogen and either weakens it or outright destroys it.

It works well enough to keep me out of trouble. I was badly flared and going down hill when I started my final protocol. That was after I found the mycoplasma pneumonia. I am stable now.

I don't advise going off of medication to try it because your pathogens may not be identical to mine. It might take some time to figure it out. It could fail as we don't know all the causes in each and every case. On the other hand, it is unlikely that none of them are the same either.

I am too familiar with this to remember the questions you might have. Feel free to ask.

Best regards.

Dan
 

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