# I started Anti-Map therapy, have any questions?



## HannahR

I want to mention that I have tested positive for MAP

Before going on the antibiotics I was completing treatments of uvbi waiting form my gastro to perscribe the antibiotics, but he refused. So we found another doctor that is willing to work with us with uvbi and the antibiotics. It seems that getting gastros to listen to this protocol can be kind of difficult at times. I will also continue the uvbi while on the antibiotics. 

I am on 
rifampin
clarithromycin
and Levofloxacin

Other meds
Prednisone 2.5mg
Pentasa

So far I have noticed, my pee is pretty colors from the Rifampin, lol and I am headed to the bathroom more with watery stools. I feel though that this is also my body getting rid of the MAP Bacteria.

If you have any questions I would love to answer them and also provide updates with how my condition improves!


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## Rblock06

good luck with the treatment, I completed 12 UVBI treatments while taking the antibiotics.  I never tested positive for MAP, but I have a strong antibody to MAP.


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## HannahR

How are you feeling on the therapy? I have looked at the other forum you made and it provided some great information.


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## rollinstone

Hi hannah, thx for posting, please keep this thread updated if you can, would love to follow it, I've been thinking of starting Map or adding it to my remicade.


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## HannahR

rollinstone said:


> Hi hannah, thx for posting, please keep this thread updated if you can, would love to follow it, I've been thinking of starting Map or adding it to my remicade.


I definatly will! One thing I have to mention is that the doctors that formulated this therapy recommended that I get off all medication once starting the antibiotics. I don't know if that would be the same with remicade or not.


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## HannahR

Update:
Its been about 9 days since I started the antibiotics and I notice the joint pain that is a side effect.
On Friday I completed another UVBI treatment which left me with a hot flash.
I have also been getting rough patches of dry skin and rashes on my face which I have been told is a reaction of the map dying off. 
I have gotten off of Imuran and prednisone and it seems like my health is holding. Usually I flare off of prednisone recently.
I have diarrhea from the antibiotics and a combination of inflammation in my intestines. 
At the moment I am feeling pretty good and don't feel like I am in a flare or anything.


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## D Bergy

I am curious about the rough patches of dry skin on the face.  My question is who told you it is from MAP dying off? 

I had these around my nose for a few months, but are gone now.  It seems to me that the rough dry skin, if caused by MAP directly, should have been gone in a couple weeks, but it persisted longer for myself. 

I am using an alternative treatment that seems to kill MAP of but never understood why the dry rough skin that occured around my nose.  My psoriasis went away immediately so I gathered that MAP caused that directly. 

Thank you, and good luck.


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## HannahR

It is part of the Herxheimer reaction from the bacteria dying off. If you scroll down on this page ___ it shows the symptoms as it includes skin rashes and such.
What alternative therapy are you using for Map? if it is not antibiotics.


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## D Bergy

I am familiar wit the herx herx response, but only as it pertains to Lyme disease.  My wife has Lyme disease and had two other coinfections that also caused pretty severe reactions when killed.  Treating her is how I came to treating Crohns in a similar manner.

I am happy to report that MAP is way easier to kill than Lyme. All the Lyme related pathogens are quite durable.

I treated MAP using a frequency device that is tuned to transmit specific frequencies that will disable, destroy or otherwise weaken a specific pathogen. The output is transmitted through a plasma tube which acts as short range antenna.

It is the same method used in the 30's by Royal Rife for common pathogens at that time.

The MAP frequencies I used were calculated mathematically based off of the genetic sequencing of the MAP bacteria. The site that has these frequencies available can be found in the link below. 

www.dnafrequencies.com

I have since found other frequencies in the public domain that should work as well. 

I use the same method to treat mycoplasma, which produces some degree of a herx reaction such as a slight fever, but I am pretty sure I was loaded with mycoplasma to a greater degree than MAP. It is also intercellular, so I am sure it's harder on the body to kill it off.

Thanks for the link.  I still am not sure why the dry skin thing took so long to go away when the psoriasis was gone in a few days after MAP treatment.  It might be caused by killing mycoplasma instead.  Mycoplasma is harder to kill and it takes longer.  I am glad its gone now.

Best regards. 

Dan


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## irishgal

Hi Hannah - I have also been on the antiMAP protocol for about 7 months now and have had fantastic success. You can see my other posts, but I'm still amazed it all just went away. I hope you also have success. I was pretty sick for about 2 weeks with debilitating nausea and had a weird metallic taste in my mouth, but it eventually went away. I also had some joint pain, but not sure if that was just Crohn's related arthritis. It's gone now.  I tested positive for MAPish through the New Zealand lab - is that where you went too? Nice guys there. Haven't tried uvbi but I did add tons of supplements, probiotics and LDN just to give my body the best chance at recovery. I've been sick for 25 years and been through the conventional therapy, but my Crohn's keeps coming back no matter what I do. This is the longest I've felt good.

D Bergy - I just heard about the frequency treatment this week! Very curious to see how it's working for you. What a great alternative to medication! Does it just target the MAPish infected macrophages or does it kill more? Did you experience any side effects? Will check out your other posts too.


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## HannahR

Thank you for this post. I have been feeling pretty run down as well with the metallic taste reminding me that the MAP is dying off haha. I believe I have seen some of your posts about anti-map and they all give me hope. I am so excited that this is the greatest you have felt. Apparently the Uvbi combo with the antibiotics makes a kind of vaccine against MAP as well, pretty cool stuff!


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## HannahR

D Bergy said:


> I am familiar wit the herx herx response, but only as it pertains to Lyme disease.  My wife has Lyme disease and had two other coinfections that also caused pretty severe reactions when killed.  Treating her is how I came to treating Crohns in a similar manner.
> 
> I am happy to report that MAP is way easier to kill than Lyme. All the Lyme related pathogens are quite durable.
> 
> I treated MAP using a frequency device that is tuned to transmit specific frequencies that will disable, destroy or otherwise weaken a specific pathogen. The output is transmitted through a plasma tube which acts as short range antenna.
> 
> It is the same method used in the 30's by Royal Rife for common pathogens at that time.
> 
> The MAP frequencies I used were calculated mathematically based off of the genetic sequencing of the MAP bacteria. The site that has these frequencies available can be found in the link below.
> 
> www.dnafrequencies.com
> 
> I have since found other frequencies in the public domain that should work as well.
> 
> I use the same method to treat mycoplasma, which produces some degree of a herx reaction such as a slight fever, but I am pretty sure I was loaded with mycoplasma to a greater degree than MAP. It is also intercellular, so I am sure it's harder on the body to kill it off.
> 
> Thanks for the link.  I still am not sure why the dry skin thing took so long to go away when the psoriasis was gone in a few days after MAP treatment.  It might be caused by killing mycoplasma instead.  Mycoplasma is harder to kill and it takes longer.  I am glad its gone now.
> 
> Best regards.
> 
> Dan


so glad that you found the mirror of Crohn's and Lyme treatment and decided to treat it differently. Still getting dry skin and now rashes which weren't there before the antibiotics so I believe it is a side-effect, at least one I am experiencing.


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## D Bergy

irishgal said:


> Hi Hannah - I have also been on the antiMAP protocol for about 7 months now and have had fantastic success. You can see my other posts, but I'm still amazed it all just went away. I hope you also have success. I was pretty sick for about 2 weeks with debilitating nausea and had a weird metallic taste in my mouth, but it eventually went away. I also had some joint pain, but not sure if that was just Crohn's related arthritis. It's gone now.  I tested positive for MAPish through the New Zealand lab - is that where you went too? Nice guys there. Haven't tried uvbi but I did add tons of supplements, probiotics and LDN just to give my body the best chance at recovery. I've been sick for 25 years and been through the conventional therapy, but my Crohn's keeps coming back no matter what I do. This is the longest I've felt good.
> 
> D Bergy - I just heard about the frequency treatment this week! Very curious to see how it's working for you. What a great alternative to medication! Does it just target the MAPish infected macrophages or does it kill more? Did you experience any side effects? Will check out your other posts too.


I don't know if they responses I have had would be described as side effects, but they are effects of some kind.  Treating MAP only had the effect of ridding me of the psoriasis, and I assume the MAP in my intestines also, but i do not have any way of proving that part.

I used the same method to rid myself of H-Pylori in the stomach.  The only effect was the burning pain went away as I ran the frequency.  It came back about 18 hours later.  I had to treat for six days in a row to be rid of it for good.  No other effects that i could detect.

When I treated Mycoplasma Pnuemonia the first time I was extremely ill. The treatment gave me a high fever that I was not able to tolerate at the time due to my various infections and fistulas.  I could not treat that way again until I was in better shape.  I got some Zithromax instead.  That knocked it back enough so I could return to work for a few weeks, but it came back and other infections with it.

had surgury to remove the fistulas, long story, but that severe fatique came back again, but this time I knew the cause so i treated myself for two hours straight for mycoplasma.  my normal treatment time is 20 minutes, so i really overdid this one, but I wanted it gone and quickly.  I was running to the bathroom all that night as my body flushed out the dead material.

I have to treat mycoplasma a lot more than anything else.  It is a tougher customer than the others.  Lately, I do not have to go after it as much, so I believe I am gaining on it.  If my guts are irritated now, it is always caused by the mycoplasma.  I treat it and the irritation goes away for quite a long time now.  

Another interesting effect of the mycoplasma treatment was that it appears to have also killed some kind of toenail fungus.  I had a distinct line on my toenails where the old part was yellowed and the new growth was pink.  It was real noticeable.

I don't know if frequency treatments will work for each and every pathogen, but there are frequencies available for many of them. I only know what has worked and failed from my own experience.   I could not kill E-Coli using the frequencies available at the time.  Since then Rife's original frequencies were discovered.  Given his anal amount of testing he did for over and over again for each pathogen he worked with, I am confident his frequencies would work for that.

A few months ago I ran Rife's original cancer frequencies just for the heck of it.  He named the viruses BX and BY that caused cancer back then.  Today, it is thought that at least one of these viruses was HPV.  Anyway, a week later after running these my back itched horribly.  I am trying to scratch it and these moles on my back start peeling off.  I can't reach them all so I have my wife look at my back and she peels off some more moles.  They all had new skin underneath and had detached from my body.  That is an effect that I have not ever heard of.  Some have had moles change color doing the same frequency treatment, but mine literally came off my body.  Not all of them but several.  Some were completely unaffected.

I hope you all get rid of MAP.  I am quite sure it is involved with most cases of Crohn's.  I am also fairly sure there are other pathogens that make it worse.  Possibly the antibiotics will take care of those also.

I wish UVBI was a little more commonly used.  I would use that treatment for any blood borne pathogen. It is a shame they do not use it more often.  It is a really useful treatment from what I have read about it.

Dan


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## irishgal

Hi Dan - thanks for all the great info! I may use this is my AMAT fails. Nice to know there are alternatives like this out there. So strange about the moles. Glad you're getting a handle on the mycoplasma. I've heard that one's tough to kill. I'm going to run this by some docs I know who may be interested. Again - glad it's working well for you!


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## gardeniagirl

Hi Hannah R….just a note to say hello and see how you are doing on your Anti Map Therapy. Hope you are doing well.

My son started this weekend and now is on Day 3…. and not feeling too well…nausea, stomach upset, cramping, some diarrhea and back pain is worse. He is also on prednisone and tramadol but going to start weaning next week. Also on probiotics and Vit D and Cal. 

Very hopeful this therapy works for both of you and all the others suffering from this horrible disease<3


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## irishgal

Hi Gardiniagirl! Nice to see you on here too.  Hope he starts feeling better soon!


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## HannahR

gardeniagirl said:


> Hi Hannah R….just a note to say hello and see how you are doing on your Anti Map Therapy. Hope you are doing well.
> 
> My son started this weekend and now is on Day 3…. and not feeling too well…nausea, stomach upset, cramping, some diarrhea and back pain is worse. He is also on prednisone and tramadol but going to start weaning next week. Also on probiotics and Vit D and Cal.
> 
> Very hopeful this therapy works for both of you and all the others suffering from this horrible disease<3


Great to hear that he is on the therapy. I am doing well, I have noticed that taking Clarithromycin and Levofloxacin causes me to be very nauseous in the afternoon. It seems better to take it after you have eaten lunch. I have also noticed that taking bromelain helps, it heals scar tissue. It took me a little while to feel better but I am off everything except for the antibiotics. If you have anymore questions please don't hesitate to ask. Your son will be in my prayers.


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## irishgal

So glad you are feeling well HannahR!!!!!


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## gardeniagirl

Thank so very much Hannah and so very glad that you are finally feeling better. I will pass on your suggestions to my son. Take care…and don't forget to post when you have time…would love to see how well you do on your journey with Anti Map.


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## gardeniagirl

Hi Irishgal….yes…between this forum and the Anti Map.org….everyone is so helpful…especially people like you! Today my son is one week in and thought he felt a little better this morning…now tonight tells me he is running a fever of about 100 and other symptoms like naseau, stomach cramping, and back pain have increased even more. I know Dr C said that he hoped he ran a fever and had flu symptoms…that it would mean things were working…. but I am concerned what if he has some sort of infection…as my son felt he was in a flare when he started. I know I could take him to the ER….but confused about what to do in this situation….any ideas from you or anyone else that might have experienced this too?


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## irishgal

GardiniaGirl - I know a fever is good since it shows the bacteria are dying off. I had low level fever too, but not for long. After a week I started to feel a bit better, but I know for other people it took longer. If he stops passing stool or gas and feels like he has an obstruction, that's definitely the time to go to the ER. There may be some anti-nausea medicine, or ginger helps. Keep in touch with Dr C and see what his advice is. I also thought I was in a Crohn's flare when i started AMAT, so it was hard to know whether I was sick from the Crohn's or the meds. In hindsight, I know it was the meds, but the symptoms felt the same. Will keep praying you know one way or the other really soon and that he recovers!


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## gardeniagirl

Irishgal…thanks as always for your support…it helps so much to compare notes. Thankfully, this morning he said he feels a little better again…so hopefully the process of the therapy is working… and not something else…..or I think he would have been worse this morning. Will keep you posted….thanks again for all your support<3


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## HannahR

So glad he is feeling better again. It seems that it is killing the awful bacteria!


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## irishgal

GardiniaGirl - Huge sigh of relief that he's feeling a little better. I've been thinking about him a lot these last few days since I don't envy him those first couple of weeks. It's so hard to know if it's working since you feel so awful, and think, This can't be making me better! I must have CDiff. PANIC!! For me, I think I was too nauseous and exhausted to do anything other than lay on the couch and try to keep the kids from jumping on me! I didn't even want to get in the car to go to the ER since driving made me dizzy and feel worse. Hoping he continues to improve little by little. It's truly amazing when it works. I still have to pinch myself sometimes when I realize I have no pain and can do everything normal people do without worrying where the nearest bathroom is!

Hannah - so glad you are also feeling better! I know it's a rough die off and some have it worse than others. Glad you are continuing to feel well and I hope it gives you many, happy, healthy years.


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## gardeniagirl

Thank you so very much Hannah…I hope it is working too…for both of you!


Irishgal, your so sweet…thank you so much for thinking of him. Yes…it is so hard to figure out….but trying to stay positive. Just feel terrible for him feeling so bad and then having to go to work. Wish he could stay home for a few days…but since we don't know how long its going to last…he doesn't want to miss work. What Crohn's patients have to go through is so difficult..it effects every part of their life…so unfair


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## BLittle

Only word that comes to mind is "wow" to all of you.  I admire each of you in your effort and strength.   I hope that you continue to post as to your progress.  

I am newly diagnosed and , of course, looking for answers.  

Thank you for your time for posting.  Thinking about each of you.. HannahR, Irishgal, and gardeniagirl & son!!


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## HannahR

BLittle said:


> Only word that comes to mind is "wow" to all of you.  I admire each of you in your effort and strength.   I hope that you continue to post as to your progress.
> 
> I am newly diagnosed and , of course, looking for answers.
> 
> Thank you for your time for posting.  Thinking about each of you.. HannahR, Irishgal, and gardeniagirl & son!!


I hope you are doing well with this new diagnosis, if you have any questions we would be glad to help.


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## irishgal

BLittle - and am sorry you have this. It's not an easy road, but it seems we all get by with a little help from our friends. I didn't have actual people I could ask who had tried this when I started AMAT, so it was a bit scary. Especially since my GI didn't support me, though she's coming around now after 10 months of drastic improvement. Check out the research, talk to your doc, and make the decision you are comfortable with. I never felt right about the conventional pathways, and thought my body would respond well to AMAT due to my history. And it did! Wishing you good health and strength to begin your Crohn's fight.


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## BLittle

Thanks so much.  Just reading each of your experiences is providing  "hope" which has been hard to imagine.  I know that I am still in the emotional stage but it is  hard to confide in others who do not know what you are going through and I pray that they never will.

You ladies ROCK and I will continually have thoughts and prayers for you!!


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## rollinstone

HannahR said:


> I hope you are doing well with this new diagnosis, if you have any questions we would be glad to help.


How are you feeling hannah?


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## HannahR

rollinstone said:


> How are you feeling hannah?


The joint pain has to be my biggest complaint. I am also finding that I am able to eat more foods without consequence, but alas not too much or my stomach starts to let me know, there is a much faster recovery time between feeling a little down though. I'm thinking my intestines are still healing and this newfound food freedom they don't like haha.


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## irishgal

HannahR said:


> The joint pain has to be my biggest complaint.


Hi Hannah - this was a big issue for me as well. I had suffered from roving Crohn's related joint pain for about two years prior to AMAT, and it was the only symptom that lingered after a couple of months when the others had disappeared. The docs told me that it should still get better, but may take longer, and eventually it subsided a bit, but never went away fully. 

Then, at about 5 months in it started getting worse again, and in different joints like my knees and wrists. I figured carpal tunnel had finally caught up to me since I had some numbness in my fingers as well. I felt like I had 80 year old knees and couldn't bend down or get back up without holding onto something. After a couple months it got very bad, and I realized it may be a side effect of the levo. The only way to nw was to go off, so I did.

Wow - within a week all my joint pain was gone!! As a test, I went back on the levo and within three days all the joint pain was back, so I stopped taking it and it went away just as quickly as it started. So clearly, the levo was giving me issues. I don't know if your situation is similar, but I thought I'd at least share my experience so you could consider it. I'm in the process of trying to switch to clofazamine, but it's harder to get.

Glad you're improving and hope your joint pain resolves!


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## BLittle

I hope everyone is doing well today?   Let me ask a question about the coping aspect.  Recently diagnosed so my coping skills right now are in the dumpster.  I lost 30lbs in less than 3 months and now starting to get the comments about the weightloss from work friends.  I have not mentioned to them about the Crohns but just go along with the "gut" problems statement.  I am on Entocort right now and have about 3 weeks left on it.  

1.  How do you mentally cope and move away from the anxiety/depression state?
2.  Is it possible to gain some weight back?
3.  My current eating is limited to chicken, rice, and bread to the most part.  should I be eating different foods while on the med?

Sorry that I am full of questions but I cannot get a call back from my GI office and my internet searches keep adding to my anxiety.

Thank you again for your advice and support.


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## irishgal

Hi BLittle - Yes, I understand. The emotional part of Crohn's for me was sometimes much harder to cope with than the physical pain, though that was pret bad too! I read an article not too long ago that said Crohn's patients had higher rates of depression and anxiety. I thiugh, "well duh, of course we do. It's a depressing and anxious long term illness! Anyone would be anxious if they knew they only had about 30-60 seconds to find a bathroom, sometimes towing kids! It keeps you house bound. It steals essential parts of your life and affects relationships. I'm sure most people would be depressed knowing they had an embarrassing illness for which they would probably need surgery and which they would find hard to share with any friends or family!" And then I read that the depression and anxiety were actually due to changes in gut microbes which affected the moods in the brain in a PHYSICAL way! I noticed that when I got fully better due to AMAT, the crazy mood swings and hopelessness went away. Now, that may be because I was better, but it also may have something to do with my physical brain chemistry being affected by my healed gut. I'm usually very even keeled emotionally, so the mood swings were new to me. So that's something for you to consider when looking at the emotional component.

I can only speak for what I've gone through, but I felt that this robbed me of the best part of my life in my late teens and 20s. I so wanted to be like other people, so I pretended I wasn't sick, didn't eat much and neglected my health and doctor visits. Boy am I paying for that now in my 40s! I think I probably could have done a lot of prevention which may have kept me from so many surgeries. I've been angry, resigned, hopeless, sad, regretful, stubborn and in denial for most of my experience but I fought against those things and still tried to go about life as normally as possible. I look back on all that I've accomplished, and how my family loves me no matter what, and I realized that I've been given an amazing gift. The silver lining in long term Crohns for me, is that I never take my good days and my life for granted. I don't know how many good days I'll have left, and I've made peace with whatever my life will bring. I don't put off doing good and loving those around me. 

Also, it's shown me clearly what is important to me in life and what is not. I see people worrying over frivolous things, and since stress is a trigger, I've learned to calm down and let a lot of things go that I'd normally worry about. It's put the precious gift of life into perspective, and shown me how lucky I am to remain here with my kids for longer.

A suggestion that helped me early on, which I pass on to others who ask: Say No. Don't let others tell you what you should be doing or rope you into jobs and projects that you don't want to do. Don't feel obligated! You can only handle what you can handle, especially when you're sick. Let the guilt go and take care of yourself the best way you can.

As for your specific questions - I never give up hope that someday, someone will figure this whole thing out and give us a cure. I don't pine for it, but I don't lose hope. This new research about MAP and FMT I've been seeing and is very promising. The best I've seen in years. I also depend on the people that care about me and ask for help when I need it. I let them baby me sometimes and get me special food that I can tolerate. When they get your flare under control, you should start gaining weight back. I always thank my lucky stars that weiht loss is seen as an advantage in our society for women! They ask me what I do for exercise, and I tell them (jokingly) to get a raging digestive disease.  I know I'm really sick when the older women at church ask me if I've been eating! I try to focus on healty foods and supplements that help inflammation, but sometimes I just eat fries because it's been a rough day!

I don't know specifically about Entocort, but as long as you can tolerate other foods, eat them! I do a lot of hummus, guacamole, tuna, quesadillas, fruit and any other food I find really yummy. Larabars are tasty, healthy, pretty cheap and a lot of calories. Think about your favorite healthy foods and start with those. Anyone know anything else about dietary restrictions on Entocort??

Sorry this is so long and preachy. It hurts me to see any Crohn's patient suffering. This is a great, supportive forum. I hope you find some healing and solace. Maybe talking to someone professionally will help you learn how to cope with this new landscape. While Crohn's is difficult, I've had so many great days that I'd never trade it. If I can conquer this, what else can I accomplish! You can do it too. Will be thinking of you often and sending good vibes your way.


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## BLittle

A HUGE hug and thanks for the inspiration!!


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## irishgal

A huge virtual hug BLittle. Just remember, you're never alone. You have all of us!!


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## HannahR

Extremely well put irishgal, and thank you for your shared experience with levo. The emotional aspect of Crohn's is such a huge aspect. I find that bathroom anxiety is the worst, even if I feel perfectly fine. Right now i'm coping with that with diapers and learning my limits.
Hope everyone is well!


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## irishgal

Hannah - yes, I agree that the emotional component is so huge, but rarely acknowledged. I think pretty much every Crohn's patient would put bathroom anxiety at the top of their list. I just heard about a Crohn's patient in the news who was refused access to two store bathrooms even though she said she had Crohn's, and then didn't make it. My heart went out to her and I wanted to give here a hug and tell her I'm so sorry that happened to her. I've been lucky that businesses have allowed me quick access, but all it takes is one "no" to have an extremely bad day. 

I hope you're doing well on AMAT. It's just been recently (even though I've been fine for months!) that I've stopped unconsiously making sure a bathroom is near, so I know what you mean. I've enjoyed getting back into biking and nature walks, which were impossible for years. I hope you get there soon and until then, we can all thank our lucky stars that they make such trim fitting adult diapers! Haha.


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## HannahR

irishgirl that is so wonderful the progress you have made with the bathroom anxiety! It is so freeing to be able to do what you want again. This really motivates me!

As for the bathroom access that company should feel ashamed, I wonder if she had one of those cards just for that purpose.


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## perfectjelly

How are you doing Hannah?


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## HannahR

perfectjelly said:


> How are you doing Hannah?


I am doing pretty good. I just recently got an EKG due to the side effects of Clarithromycin and Levofloxacin which can be palpitations. If it comes back concerning I will be switching those two antibiotics. 

Crohn's wise it is going well, I realize that sugar is the worst thing you can eat with MAP and it is definitely observable. I try to stay clear of things that are high in sugar. I have noticed that I am not as sensitive as I was to harder to digest grains like corn. I have been able to eat more with it and experiment. 
If my stomach ever doesn't agree with something It usually resolves itself within the week. It is awesome!


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## perfectjelly

Hannah and Irishgal,

Isn't antibiotic-related diarhea an issue with AMAT? Isn't it necessary to use a good probiotic in combination with the antibiotics? These questions really bother me.


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## HannahR

perfectjelly said:


> Hannah and Irishgal,
> 
> Isn't antibiotic-related diarhea an issue with AMAT? Isn't it necessary to use a good probiotic in combination with the antibiotics? These questions really bother me.


It can be an issue and that is why I am taking Therbiotic at 1/4 a teaspoon a day as well as Florastor.


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## perfectjelly

Thank you for the quick responses :ysmile:

Another question, is red coloration of bodily fluids(sweat, tears) a real issue with rifampin or is it a rare occurrence?


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## HannahR

perfectjelly said:


> Thank you for the quick responses :ysmile:
> 
> Another question, is red coloration of bodily fluids(sweat, tears) a real issue with rifampin or is it a rare occurrence?


Happy to answer your questions 

The only thing that I have noticed become red is my urine. Other than that it is unnoticeable to me.


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## perfectjelly

Also, what are your current dosages?


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## HannahR

perfectjelly said:


> Also, what are your current dosages?


Rifampin 600mg
Clarithromycin 1000mg
Levofloxacin 500mg


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## irishgal

Dr. Chamberlin has a Q&A going about AMAT here: http://thecrohnsinfection.org/anti-map-qa/

More will be posted as he gets to them. If you have questions about AntiMAP therapy that you want answered, feel free to post here/PM me and I'll do my best to get them answered by the docs.


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## HannahR

Update:

Since Halloween and a little before I have noticed my health declining. I am now receiving full uvbi therapy every week(as my health allows). What I am also doing is hydrogen peroxide baths everyday, which has been said is almost as good as a uvbi treatment. These seem to help me with my symptoms on that day. I am very hopeful that the pairing of the full uvbi treatment and the addition of a 4th antibiotic, clofazimine, will really start to amp things up again. The doctors I am talking to tell me it could be an array of things and that my body could simply be detoxing or the MAP bacteria isn't responding to solely the antibiotics, which is common. Paired with the uvbi treatments this protocol seems unstoppable and I should be gaining health back every time I have one. After having the first full treatment I instantly felt better after a day of lugging myself through New York on an empty stomach on the fear that I would have to use the bathroom.

I just want to be as real as possible and not sugar coat my progress with this treatment method.


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## irishgal

Hi Hannah,

Thanks for the update! I'm sorry you aren't feeling 100%. Had you improved from June to Halloween? What symptoms are making you feel worse? Is it general Crohn's symptoms like increased bowel movements and abdominal pain, or more like joint pain? I'm always interested in how people respond to AMAT. For me, around 5 months in I noticed worsening joint pain. It had been an issue with my Crohn's for a couple of years prior to AMAT, so I just figured some symptoms took longer to disappear than others. However, it got worse and worse until I could barely use my hands by the end of each day and could not crouch to the ground. Turns out it was a side effect of the levofloxicin, and a few days after I went off, all the pain was gone. Just to make sure, I went back on and sure enough, within a day the joint pain was back in full force. I'm considering adding clofaz but since I was doing so well with the two plus LDN, figured I'd wait to see how the histology looks on my upcoming colonoscopy. 

I know some other patients who did well on uvbi, and glad it seems to be working for you. I think the theory on it is that it stimulates the immune system to clear the bacteria, which is what's broken in the first place. I went the LDN route, which is supposed to do the same basic thing. I've heard that some people are resistant to AMAT due to past therapies. I actually thought this would be me since I've been on everything, but I got lucky. I'm at a year now with no sign of Crohn's. Just got my results back from John Aitken and it showed very little mycobacteria in my sample, compared to large amounts prior to AMAT. Thanks again for the update, and I hope you start feeling better!


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## irishgal

Perfectjelly - did you decide to go the AMAT route, and if so, how are you doing?


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## HannahR

irishgal said:


> Hi Hannah,
> 
> Thanks for the update! I'm sorry you aren't feeling 100%. Had you improved from June to Halloween? What symptoms are making you feel worse? Is it general Crohn's symptoms like increased bowel movements and abdominal pain, or more like joint pain? I'm always interested in how people respond to AMAT. For me, around 5 months in I noticed worsening joint pain. It had been an issue with my Crohn's for a couple of years prior to AMAT, so I just figured some symptoms took longer to disappear than others. However, it got worse and worse until I could barely use my hands by the end of each day and could not crouch to the ground. Turns out it was a side effect of the levofloxicin, and a few days after I went off, all the pain was gone. Just to make sure, I went back on and sure enough, within a day the joint pain was back in full force. I'm considering adding clofaz but since I was doing so well with the two plus LDN, figured I'd wait to see how the histology looks on my upcoming colonoscopy.
> 
> I know some other patients who did well on uvbi, and glad it seems to be working for you. I think the theory on it is that it stimulates the immune system to clear the bacteria, which is what's broken in the first place. I went the LDN route, which is supposed to do the same basic thing. I've heard that some people are resistant to AMAT due to past therapies. I actually thought this would be me since I've been on everything, but I got lucky. I'm at a year now with no sign of Crohn's. Just got my results back from John Aitken and it showed very little mycobacteria in my sample, compared to large amounts prior to AMAT. Thanks again for the update, and I hope you start feeling better!


I had improved before then but during that time I was not receiving the full uvbi therapy which was a mistake. The symptoms I am experiences are Crohn's like but not very much bleeding thank goodness. I am so glad to hear that it is working for you. Are you considering uvbi to clear out the final bacteria?


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## irishgal

Hi Hannah - how are you doing? I just realized I never got back to you. Probably won't do UVBI unless I relapse. It's expensive and I have no idea of where to go in my area. Has it helped you or is it too early to tell? Have you ever thought of combining LDN with AMAT? I think that has helped a lot. It was hard to adjust in the beginning. I woke up a lot at night, but now I really do feel that it's working. I added it when I failed levofloxicin. Will add clofaz if symptoms return. Crossing my fingers that I can last a couple of years until they have this all sorted out. We're getting closer!

Dr. Chamberlin also answered some more AntiMAP questions on TheCrohnsInfection.org. Things like: Rifabutin vs. rifampin, Tests to have done prior to AMAT and ramp up vs. full strength. I have another 8 or so to post as soon as I have a few minutes. These are commonly asked questions I see all over the forums, so it's nice to have Dr. Chamberlin address them as he is one of the few AMAT experts in the world.

Really hope you are feeling better Hannah!


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## HannahR

irishgal said:


> Hi Hannah - how are you doing? I just realized I never got back to you. Probably won't do UVBI unless I relapse. It's expensive and I have no idea of where to go in my area. Has it helped you or is it too early to tell? Have you ever thought of combining LDN with AMAT? I think that has helped a lot. It was hard to adjust in the beginning. I woke up a lot at night, but now I really do feel that it's working. I added it when I failed levofloxicin. Will add clofaz if symptoms return. Crossing my fingers that I can last a couple of years until they have this all sorted out. We're getting closer!
> 
> Dr. Chamberlin also answered some more AntiMAP questions on TheCrohnsInfection.org. Things like: Rifabutin vs. rifampin, Tests to have done prior to AMAT and ramp up vs. full strength. I have another 8 or so to post as soon as I have a few minutes. These are commonly asked questions I see all over the forums, so it's nice to have Dr. Chamberlin address them as he is one of the few AMAT experts in the world.
> 
> Really hope you are feeling better Hannah!


Hey, I currently got put on prednisone just so I could make it to New York for the treatment. I will be sure to update my health. It seems that UVBI is really helping people.


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## perfectjelly

Hi irishgal, i still didn't start anti-map , but i'm looking actively for an MD who can prescribe it to me here in Brazil.
I'm doing mostly fine on 10.000 UI vitamin D and 3,6 g Butyrate.

I'm sorry you are not well Hannah, hope UVBI is the game changer. I've read a paper where it say relapses are common midway through anti-map, followed by long term remission.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385555/

"The patient responded favorably to the antibiotics for about 8 mo, but by June 2005, he became symptomatic and relapsed (a finding similar to that of the Australian trial). The period of relapse lasted from June 2005 to March 2006 and during this time he remained on low dose antibiotics."

"Since May 2011, he has received no medications of any type and he has been without any signs or symptoms of CD and is now 5 feet 10.5 inches and 185 pounds (84.1 kg). A follow-up blood culture for MAP in July 2007 failed to recover MAP by culture or detect MAP DNA by PCR and he tested negative for anti- MAP antibody. Currently, he has a normal blood count and is negative for inflammatory markers including ESR and CRP. A colonoscopy and upper gastrointestinal endoscopy in August, 2014 were normal. There are many reports in the literature of patients with CD who have responded favorably to antibiotic therapy"


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## irishgal

Hope you find a doc soon perfectjelly, but glad you are modereately well controlled in the interim. Thanks for the reference.


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## HannahR

perfectjelly said:


> Hi irishgal, i still didn't start anti-map , but i'm looking actively for an MD who can prescribe it to me here in Brazil.
> I'm doing mostly fine on 10.000 UI vitamin D and 3,6 g Butyrate.
> 
> I'm sorry you are not well Hannah, hope UVBI is the game changer. I've read a paper where it say relapses are common midway through anti-map, followed by long term remission.
> 
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385555/
> 
> "The patient responded favorably to the antibiotics for about 8 mo, but by June 2005, he became symptomatic and relapsed (a finding similar to that of the Australian trial). The period of relapse lasted from June 2005 to March 2006 and during this time he remained on low dose antibiotics."
> 
> "Since May 2011, he has received no medications of any type and he has been without any signs or symptoms of CD and is now 5 feet 10.5 inches and 185 pounds (84.1 kg). A follow-up blood culture for MAP in July 2007 failed to recover MAP by culture or detect MAP DNA by PCR and he tested negative for anti- MAP antibody. Currently, he has a normal blood count and is negative for inflammatory markers including ESR and CRP. A colonoscopy and upper gastrointestinal endoscopy in August, 2014 were normal. There are many reports in the literature of patients with CD who have responded favorably to antibiotic therapy"


Yes it is a long road to recovering that I know will be totally worth it. Thank you so much! I really hope you can find a great doctor who will work along side you with this protocol!


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## HannahR

UPDATE: Currently on 20mg of prednisone to make it to New York to get some UVBI done. 

I have to say, I just got a treatment done this past Friday and boy, What a difference it made that day. As I was getting more and more of the treatment my body felt relaxed and my cramping was gone. I made it 8 hours without pooping huzzah! Especially since I didn't want to use the PennStation bathrooms..yuck.

These UVBI treatments work consecutively as you get treatments done. This means I should be feeling better and better with each treatment. I have another one This Monday and I hope to start feeling the consecutive effects. 

I will absolutely keep updating this UVBI journey because this seems to be what is really working.


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## irishgal

Hi Hannah - I was just thinking about you today and hoping you were doing a little better. Great news about the UVBI! I hope it continues to work for you. Take care, and I hope you are fully well soon.


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## matt82

I was just wondering if anyone knows any hospitals and doctors in ontario Canada that test for MAP and treat with anti-map antibiotics?    I have had crohns for 17 years and at the moment I'm in a flare and have an abdominal fistula that leaks out the skin next to my belly button. I have been put on linesolid, flucanozone, and another antibiotics for the bacteria they said was growing from the drainage. And 40mg of predonsone.   I'm really trying to stay away from surgery but I'm to the point after 4 months that it's not getting better and I can't start any biological drugs cause the infection won't go away.   So I'm really trying everything I can. And would really like to know of any hospitals or GI that do this in Ontario Canada.   Thanks


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## irishgal

Mount Sinai in Toronto is doing the RedHill study. I assume due to that their GI dept would be pretty well versed in AMAT. Maybe you could inquire about any docs there that would see you as a patient aside from the study and discuss AMAT with yiu.

If you want a MAP/mycobacteria test, send a blood sample to John Aitken in New Zealand. He's amazing and the only one in the world who can culture this in humans reliably. His company is Otakaro Pathways and you can contact him through the portal on that site. Really hope you get some relief soon! I can't imagine the horror of fistulas like that, having only a very small one a few times. Truly hope you find a therapy that works well for you!


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## matt82

irishgal said:


> Mount Sinai in Toronto is doing the RedHill study. I assume due to that their GI dept would be pretty well versed in AMAT. Maybe you could inquire about any docs there that would see you as a patient aside from the study and discuss AMAT with yiu.
> 
> If you want a MAP/mycobacteria test, send a blood sample to John Aitken in New Zealand. He's amazing and the only one in the world who can culture this in humans reliably. His company is Otakaro Pathways and you can contact him through the portal on that site. Really hope you get some relief soon! I can't imagine the horror of fistulas like that, having only a very small one a few times. Truly hope you find a therapy that works well for you!


Thank you very much for the info. I have a GI at the London University Hospital. I may run this by her. She is new to me since my gi for 17 years repaired last month. Hopefully she has heard of this since London University Hospital is a learning and teaching hospital


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## irishgal

Matt - You could maybe suggest that she contact Mount Sinai or possibly Dr. Chamberlin in the US to consult about AMAT. Especially with fistula, Dr. Chamberlin may be helpful since I thought he said those point to mycobacterial infection in Crohn's. Also, point her to the Core Research Pack at TheCrohnsInfection.org, which was built to give docs the research they need in one packet. There is solid evidence pointing to AMAT working in a decent percentage of Crohn's patients, and RedHill is confirming that now. Luckily in Canada you'll have better access to clofazimine, which we in the US have to sub with levofloxicin, or order overseas. Really hope you find some relief! It's such an awful, life sucking disease.


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## matt82

irishgal said:


> Matt - You could maybe suggest that she contact Mount Sinai or possibly Dr. Chamberlin in the US to consult about AMAT. Especially with fistula, Dr. Chamberlin may be helpful since I thought he said those point to mycobacterial infection in Crohn's. Also, point her to the Core Research Pack at TheCrohnsInfection.org, which was built to give docs the research they need in one packet. There is solid evidence pointing to AMAT working in a decent percentage of Crohn's patients, and RedHill is confirming that now. Luckily in Canada you'll have better access to clofazimine, which we in the US have to sub with levofloxicin, or order overseas. Really hope you find some relief! It's such an awful, life sucking disease.


Thanks again. I'll tell my GI about this o. The 25 th of this month. Hopefully I'll get somewhere with it


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## HannahR

Thank you irishgirl for all the information you provided! matt82, I hope you have success in finding a doc that will help you with this protocol.

Update: 1/19/16- So far I have had 4 uvbi treatments and it is amazing how well I feel after them. I feel like I am getting a detox the days after though because of the amount of bowel movements I have. During my treatments I start to sweat or feel very cold. My doctor told me this is also a detox of the infection dying! Yes DIE DIE DIE! Haha.
I am currently tapering on prednisone to let my immune system start to kick back in and really work hand in hand with the uvbi. This is looking very promising!


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## matt82

HannahR said:


> Thank you irishgirl for all the information you provided! matt82, I hope you have success in finding a doc that will help you with this protocol.
> 
> Update: 1/19/16- So far I have had 4 uvbi treatments and it is amazing how well I feel after them. I feel like I am getting a detox the days after though because of the amount of bowel movements I have. During my treatments I start to sweat or feel very cold. My doctor told me this is also a detox of the infection dying! Yes DIE DIE DIE! Haha.
> I am currently tapering on prednisone to let my immune system start to kick back in and really work hand in hand with the uvbi. This is looking very promising!


 This may be a stupid question but what is uvbi treatment?


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## HannahR

matt82 said:


> This may be a stupid question but what is uvbi treatment?


UVBI treatment is ultra violet blood irradiation therapy. An amount of blood is taken out and run over a uv light and then run back in over the same uv light. This is a really old method of treatment that has recently resurfaced because of the increasing amount of bacteria that are becoming resistance to antibiotics. This treatment works hand in hand with the antibiotics in killing the MAP and also even giving you some form of resistance to it, like a shot. On this protocol the MAP can become resistant to the antibiotics and this UVBI therapy used in conjunction with the antibiotics has been having a great healing rate for those on it. I know of people who have had 10+ years of remission and who are still in remission using this treatment in conjunction with the antibiotics. If you can get in contact with Dr. Chamberlin or Dr. Kuenstner they can inform you more about it. I believe there is a link somewhere on this forum topic where irishgirl posted a link to their website.


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## Ricky_V

Where can someone get tested for MAP?


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## irishgal

Ricky V - John Aitken's lab in New Zealand is the gold standard for mycobacterial testing. He cultures it quickly and routinely, which no one else has been able to do. The culture has the advantage of telling nuances in strains, and will likely lead to individual info for the patient in the future when he publishes. You will need to send him two blue top tubes of blood via FedEx. The first read is in 7 days, then he reads it again after a month. I've gotten a before and after AMAT culture through his lab, and have been very pleased. Plus, he's an amazing, kind person in addition to being brilliant. You can send him a message through his company portal, and he will provide you more info.

http://www.otakaropathways.co.nz/contact


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## matt82

So had an appointment at my hospital with GI, ID,and I R. And see surgeon next week about this fistula that now is growing and other crazy little bug lol. But I asked about MAP and the AMAT treatment. And they had never heard of it. I was actually very shocked since this hospital in Ontario Canada is suppose to be a major research hospital. One of the best I was told for crohns. But has no idea about what I was talking about. But they were real quick to tell me about two new biologics that are now available.


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## irishgal

Matt82 - that is surprising that a research practice wouldn't know of it. It's been around for 20 years! If you want to discuss it with someone, you may need to head to Toronto to Mount Sinai, or you could always provide the current practice with the Core Research Pack from TheCrohnsInfection.org and have them review and discuss with you. My guess is that if they are pushing new biologics, they won't want to consider AMAT. GI's are notoriously closed minded about AMAT (or anything that's not big pharma). Maybe primary care docs or an integrative health doc would be more helpful. Sorry they couldn't help you!


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## HannahR

UPDATE:
Started Clofasamine with my previous antibiotics and have finally started the herxhiemer reaction. I don't think i've been this happy to feel crappy haha. Last few nights have been kind of hard but tonight I feel a lot better and my fever has gone down to 99.5.


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## irishgal

Hi Hannah! Wondering how you are doing. Was thinking about you the other day since I had a patient email TheCrohnsInfection.org asking for a doc in the NYC/NJ area. If you've got a prescribing doc that you don't mind sharing for my private list, send me a quick PM. Regardless, let us know how you're doing! Know it was rocky for a while but I'm hoping the UVBI helped and that you are on the road to recovery and healing.


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## HannahR

Hey irishgal, things have not been going my way. I believe I have a stricture so we just got a CT Scan yesterday so hopefully that will shed some light on the problem. I also think I either have heartburn or have developed ulcers in my esophagus because it is soooo painful to eat. Ugh I just need to have an easy day one of these days haha. Thanks for checking in with me. I do not know any prescribing doctors in the NYC/NJ area unfortunately.


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## irishgal

Hi Hannah - so sorry things have not been going well! It's such an awful disease. Wish I could wave a magic wand and make it all go away for you and everyone. Strictures are tough. I know sometimes they can use a balloon to fix them, but other times it's surgery. Keep your AMAT doc in the loop and hopefully they'll help find something that works for you. PM me if you need anything I can help with! Hugs, and hope you have a super easy day tomorrow.


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## Scared1

HannahR said:


> I want to mention that I have tested positive for MAP
> 
> Before going on the antibiotics I was completing treatments of uvbi waiting form my gastro to perscribe the antibiotics, but he refused. So we found another doctor that is willing to work with us with uvbi and the antibiotics. It seems that getting gastros to listen to this protocol can be kind of difficult at times. I will also continue the uvbi while on the antibiotics.
> 
> I am on
> rifampin
> clarithromycin
> and Levofloxacin
> 
> Other meds
> Prednisone 2.5mg
> Pentasa
> 
> So far I have noticed, my pee is pretty colors from the Rifampin, lol and I am headed to the bathroom more with watery stools. I feel though that this is also my body getting rid of the MAP Bacteria.
> 
> If you have any questions I would love to answer them and also provide updates with how my condition improves!


Hi Hannah,
Who did you test with if you don't mind me asking for the MAP? I have yet to do my husband's test - I am actually kind of worried that it will be negative but we will see....


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## HannahR

Scared1 said:


> Hi Hannah,
> Who did you test with if you don't mind me asking for the MAP? I have yet to do my husband's test - I am actually kind of worried that it will be negative but we will see....


It was with Dr. Aitken in New Zealand.


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## HannahR

irishgal said:


> Hi Hannah - so sorry things have not been going well! It's such an awful disease. Wish I could wave a magic wand and make it all go away for you and everyone. Strictures are tough. I know sometimes they can use a balloon to fix them, but other times it's surgery. Keep your AMAT doc in the loop and hopefully they'll help find something that works for you. PM me if you need anything I can help with! Hugs, and hope you have a super easy day tomorrow.


Thank you irishgirl, we are trying to get to the bottom of this!


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## StacyPoo

Hello, My name is Stacy and I am 44 years old and have had crohns disease since 2012 but wasnt diagnosed until december 2014.,...xmas eve in fact.
I also had a neuro endocrine carcinoma in my intestines which was removed along with 12 inches of my colon on Feb 14th 2015. Back in 2008 I had diverticulitis and had 8 inches of my colon removed from that. So in total ive had 1ft 8 inches of my colon removed. 
I finally found a dr to treat me for MAP, this is after having my time wasted by Dr Chamberlin who lied to me and acted like he would help me and then acted like he didnt know who I was a month later. 
But now I have a dr who is actually helping me. He proscribed Clarithromycin 250mg twice daily, and Rifabutin 150mg twice daily. There is another med that I am getting from Australia, clofazimine pretty soon. So so far I have been taking the Clarithromycin and rifabutin and on the 5th day of taking them, I woke up with a fever and felt sore and achy. Now despite having a low immune system, i havent been "sick" with a cold, flu or anything like that in over 4 years so Im not sure if this is from the meds I am on. I am tempted to quit taking the antibiotics to see if i feel better tomorrow.
Ive heard people say that this is normal to get fevers and body aches while talking Anti MAP therapy antibiotics.... can someone confirm that? Because in the side effects of the meds it says if you develop a fever it could be a side effect and i should contact my dr... so im not sure what to do. Any help would be amazing!
Thank you.
Stacy


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## HannahR

StacyPoo said:


> Hello, My name is Stacy and I am 44 years old and have had crohns disease since 2012 but wasnt diagnosed until december 2014.,...xmas eve in fact.
> I also had a neuro endocrine carcinoma in my intestines which was removed along with 12 inches of my colon on Feb 14th 2015. Back in 2008 I had diverticulitis and had 8 inches of my colon removed from that. So in total ive had 1ft 8 inches of my colon removed.
> I finally found a dr to treat me for MAP, this is after having my time wasted by Dr Chamberlin who lied to me and acted like he would help me and then acted like he didnt know who I was a month later.
> But now I have a dr who is actually helping me. He proscribed Clarithromycin 250mg twice daily, and Rifabutin 150mg twice daily. There is another med that I am getting from Australia, clofazimine pretty soon. So so far I have been taking the Clarithromycin and rifabutin and on the 5th day of taking them, I woke up with a fever and felt sore and achy. Now despite having a low immune system, i havent been "sick" with a cold, flu or anything like that in over 4 years so Im not sure if this is from the meds I am on. I am tempted to quit taking the antibiotics to see if i feel better tomorrow.
> Ive heard people say that this is normal to get fevers and body aches while talking Anti MAP therapy antibiotics.... can someone confirm that? Because in the side effects of the meds it says if you develop a fever it could be a side effect and i should contact my dr... so im not sure what to do. Any help would be amazing!
> Thank you.
> Stacy


The fever and being sore and achy may be the antibiotics working. There is something called a herxheimer reaction where your body starts killing off the bad bacteria fast and it can cause this reaction. When I started anti-map this is what I was told to look out for as it means it could be working. But do keep on top of the symptoms you notice and keep your doctor updated to make sure things go smoothly. I hope this works for you!


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## irishgal

Ditto what Hannah said. I felt exactly like you describe and horribly nauseous for a week or two. It went away slowly as my body adjusted and the MAP died. Also, that is about a half dose of AMAT. My starting dose on day one was 1000mg clarithro, 600mg rifampin and 500mg levo. It was rough. Ramping up alleviates some of the side effects, but unless your doc is adjusting for weight (I was 110lbs) and you are tiny, you may want to consider talking to him about increasing the dose. Good luck, I hope it works for you! Keep on top of the side effects. Watch for CDiff and obstruction signs.


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## sstorey83

Hubby just started AMAT. He is feeling really lousy and I was hoping to bounce his symptoms off someone else that may have experienced similar issues. Thank you so much!


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