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Crohn's Disease Forum » Treatment » I started Anti-Map therapy, have any questions?


 
06-07-2015, 09:59 AM   #1
HannahR
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I started Anti-Map therapy, have any questions?

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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Diagnosed
2006-Crohn's
Medication
Waiting to be put on Remicade
Update
Tested positive for MAP!
Failed first try of Anti-Map going to try again with Remicade/Anti-map cocktail
06-07-2015, 11:24 PM   #2
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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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Dx: Crohns Disease 2006

Current Medications
Clarithromycin
Rifampin
Clofazimine
Humira
06-07-2015, 11:39 PM   #3
HannahR
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How are you feeling on the therapy? I have looked at the other forum you made and it provided some great information.
06-08-2015, 05:21 AM   #4
rollinstone
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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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-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
06-08-2015, 07:08 AM   #5
HannahR
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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.
06-14-2015, 09:15 AM   #6
HannahR
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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.
06-14-2015, 01:18 PM   #7
D Bergy
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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.
06-14-2015, 01:52 PM   #8
HannahR
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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.

Last edited by Jennifer; 06-15-2015 at 07:16 PM. Reason: Link removed as it requests donations
06-14-2015, 03:14 PM   #9
D Bergy
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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
06-21-2015, 09:55 PM   #10
irishgal
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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.
06-21-2015, 10:27 PM   #11
HannahR
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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!
06-21-2015, 10:29 PM   #12
HannahR
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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.
06-25-2015, 07:28 PM   #13
D Bergy
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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
06-25-2015, 08:41 PM   #14
irishgal
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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!
07-28-2015, 02:01 PM   #15
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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
07-28-2015, 04:09 PM   #16
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Hi Gardiniagirl! Nice to see you on here too. :-) Hope he starts feeling better soon!
07-30-2015, 02:20 PM   #17
HannahR
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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.
07-30-2015, 08:15 PM   #18
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So glad you are feeling well HannahR!!!!!
08-01-2015, 08:40 PM   #19
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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.
08-01-2015, 08:47 PM   #20
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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?
08-02-2015, 07:35 AM   #21
irishgal
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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!
08-02-2015, 11:27 AM   #22
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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
08-02-2015, 12:53 PM   #23
HannahR
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So glad he is feeling better again. It seems that it is killing the awful bacteria!
08-02-2015, 08:00 PM   #24
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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.
08-03-2015, 12:12 AM   #25
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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
09-24-2015, 12:08 PM   #26
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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!!
09-24-2015, 12:15 PM   #27
HannahR
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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.
09-24-2015, 12:20 PM   #28
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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.
09-24-2015, 12:36 PM   #29
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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!!
09-24-2015, 06:44 PM   #30
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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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