Treatment Advice

[Bill Vasiliadis]

First post, be gentle aha.

I recently decided, after much internal deliberation, to stop the medication I was taking for my crohn’s and to instead seek alternatives. The medication I was on was none other than remicade and it has been a few months now since I had my last infusion. I had been taking remicade, along with 6mp, for a number of years and it did improve my symptoms from what was moderate to severe crohns to what was mild to moderate illness. For as long as I had been on the medication my symptoms were, for the most part, fairly stable and easy to manage, to the point where I would hardly think about my condition for long stretches of time. The symptom which proved most difficult was fatigue (and still is), although I attribute that to other things and not just the crohn's.

There were talks earlier in the year with my gastroenterologist about stopping the medication, which saw me have an ultrasound to get a better idea of the appropriateness of such a course of action. The ultrasound showed active, but fairly mild, disease (especially where the small and large intestine meet, not sure if this is common in crohn’s). I saw this as a chance for me to try other avenues of treatment as being on such heavy immunosuppressant medication (potential long term side effects anyone?), while it has proved effective, never really sat well with me. Needless to say that I was told that doing so would see my symptoms return in 3-6 months, but I decided to take my chances.

It has been a little over one month since I last saw my gastro (who is a good guy btw), and during that time I have been experiencing what I believe to be a flare up or a return in symptoms, although I leave the door open to it being something else. I don’t really understand how my symptoms could have returned so quickly as it has only been a short period of time and even if I did continue with the remicade I would have only recently (in the last 1 -2 weeks) had the first of three infusions.

I have yet to see any alternative practitioners and try other medicines as I didn’t expect my symptoms to return so quickly (yes, I’ve dropped the ball).

Does anyone have any wisdom or advice to offer? I am planning to see an alternative practitioner (i.e. naturopath) sometime in the next week and for those who have gone this route, how effective were the treatments? A part of me honestly believed that with a healthy diet, supplements and other alternative approaches, I could manage without orthodox medication, but now I am not so sure. I am stuck in that I want to at least try a different approach, but if what I am experiencing is a return of symptoms, things may get worse if alternative treatments prove ineffective.

It's particularly hard when you read about people supposedly getting better through means which have little to no side effects. If they can do it, why can't I?

If I am being silly and irrational, feel free to point it out

Peace:soledance:

 

[D Bergy]

Welcome to the forum.

I use exclusively alternative treatments for my Crohns at this time. I say at this time because if it fails to keep me well over the long term, I certainly will look again at all options. Conventional or otherwise.

I have never seen a naturopath. I know very little about them. Diet and certain supplements can take the edge of Crohns, but for myself it simply was not enough to reverse the disease or even hold it at bay.

I do think they can help to some degree but when the disease is entrenched as it was for me you need to be more aggressive.

I tried LDN which would was my first choice due to its lack of side effects. It didn't work. Then I tried Azathioprine along with Lialda and steroids and I progressively went down hill due to fistulas.

I was also treating myself for MAP and E-Coli using Rife frequency treatment all along. This is the alternative method I had used for years treating my wife's Lyme disease and coinfections.

Through trial and error, lots of error, I finally came to the conclusion that my particular brand of Crohns symptoms were caused by four main pathogens.

MAP, E-Coli, Mycoplasma pneumonia, and H-Pylori. Lots of mycoplasma and H-Pylori. I would say by my reaction to treatment I was loaded with the last two.

I don't generally suggest anyone use this method unless you are already taking some conventional treatment method because it might fail. Not everyone's crohns is going to have identical pathogens involved. There could be more involved for others, or less.

You also can temporarily flare yourself killing some of these pathogens, particularly the H-Pylori. Its not for everyone, and I know of no one else that has took it to the level I have in treating Crohns.

I also take several supplements that I would take even without crohns. Many are anti-inflammatory in nature, but none of them stopped the disease progress.

If I was in your position, I guess I would start back up on the treatment you were on as a temporary solution until you feel you have a more permanent alternative solution.

It buys you time. I had no time left and just by the grace of God I put the last pieces of my puzzle together just in time to keep me from another downward spiral.

Just my opinion.

Dan

 

[Bill Vasiliadis]

Welcome to the forum.
Through trial and error, lots of error, I finally came to the conclusion that my particular brand of Crohns symptoms were caused by four main pathogens.

MAP, E-Coli, Mycoplasma pneumonia, and H-Pylori. Lots of mycoplasma and H-Pylori. I would say by my reaction to treatment I was loaded with the last two.
Dan

It has only been through reading some posts on this forum that I have become aware of the idea that crohns may be pathogenic in nature, which I had never considered as my GP and gastro never once mentioned it. May I ask how it is that you were diagnosed as having the pathogens you listed and what medications are you taking for them? Are diagnostic tests for these pathogens readily available or are they hard to find? I live in Melbourne if that it is at all helpful.

 

[D Bergy]

Hello Bill.

I do not use any medications at this time. As I mentioned none of them worked for me. I was going back into a downward spiral after I had fistulas removed while on Imuran, but while I was very ill I had discovered that I was infected with mycoplasma pneumonia. Not just in my lungs, where it became obvious due to pneumonia, but throughout my body and heavy in my intestinal tract.

How I discovered I had it was by running specific frequencies that are supposed to destroy mycoplasma. I say "supposed to" because I do not know if these frequencies actually work until I have used them long enough to see if I get any result from them. Some of them do not work, but these ones did work.

When I was extremely ill, I read about an integrative doctor that had a patient with Crohns like symptoms who was tested for various pathogens, and mycoplasma was found. She treated the person with the appropriate antibiotics and the patient recovered. Since there are listed frequencies for mycoplasma I have nothing to lose by testing with the frequencies. I did a short treatment as I was very ill and did not want to experience a bad die off effect in case I did have mycoplasma.

I did have a reaction and that was a fever shortly after. I was already very ill and for the first time in my life I thought that I might not live through the night. Even that bit of a fever which normally would be no big deal, made me feel that much worse. I did not know it at the time, but I was septic from the fistulas which had joined my bowel with my bladder and the soaz muscle in my back. I had lots of infection which was in my blood stream. I did not dare treat any longer with the mycoplasma frequencies. The die off was more than I could take at that time. It was after that I got the Zithromax as antibiotics stop the reproduction of pathogens which is much gentler than destroying them on the spot.

I had already had pneumonia so the doctor had no qualms about giving me Zithromax, and actually improved substantially after taking Zithromax to treat the pneumonia. I improved enough to return to work as I was totally disabled prior to that. However, that only lasted for 3 weeks. The other infections I had due to the fistulas continued to increase, and i went down hill back to disabilty, and eventually surgery.

After my surgery, I was at home and somewhat recovered from the surgery, enough that I could theoretically do anything I could before. I cut down a dead tree in my yard and was cutting it up for firewood. I was extremely fatigued. Not just tired, I was physically exhausted to the point I could not finish cutting up that one little tree. I normally could cut up several without any problems. I thought to myself, "whats going on here?". It struck me at that moment that the mycoplasma was back. Severe fatigue was the symptom that I had when mycoplasma was at a high level and the next step was pneumonia. I already had been coughing up a little phlegm.

Mycoplasma is parasitic. It takes its energy directly from your cells. that is why when it reaches a certain level, you are mentally and physically fatigued. it is simply cause and effect.

I suspected that the mycoplasma was the cause of my fistulas to begin with, as I had no indication of them before in any test I had done years before.
I treated the mycoplasma on the spot for two hours using the frequencies for mycoplasma pneumonia. The reaction I had was diarrhea all that night. I had to get up several times to go to the bathroom. Normally, I rarely get up even once.

At this time, given more recent results, I feel that fistulas could be either caused by Mycoplasma or H-Pylori or both. I have no way to know for certain

I continued treating very often, usually for an hour at a time. My fatique symptoms went away, the phlegm I had in my lungs went away, even a toenail fungus went away. Never figured that one out. The mycoplasma would come back quite quickly if I did not treat it often enough. Now, I still treat it on occasion, but I cannot detect any that is left. There is likely some there, but it is at lower levels that do not cause symptoms or reactions to treatment.

Mycoplasma was the last pathogen I found that contributed to my disease. After my surgery to remove the fistulas, I asked specifically for a mycoplasma test from the gastro doctor, as I had previously had pneumonia, and actually improved substantially after taking Zithromax to treat the pneumonia, I thought it would be nice to have confirmation of my discovery. The doctor said "we don't do that test" which astounded me. No wonder they never figure out any cause for disease. I would end up paying for the test, which was fine by me, so I don't understand hospital logic.

In general, all these tests can only prove you have an infection. They cannot prove you do not. I have been led astray twice by negative tests. The best test for me is still using the frequency device. If nothing is there to hit, nothing happens. If you do hit something that is in large enough amounts to cause symptoms, you will usually get some reaction to it.

How I discovered that MAP was involved with Crohns, was more straight forward. I had a patch of psoriasis on my shin that would not go away no matter what I tried. It appeared right before my Crohns diagnosis so I knew it had something to do with Crohn's but no idea what caused it. I ran the frequencies that are supposed to destroy MAP and the psoriasis flared up and puffed up on my shin, then over the next few days it flattened out and just faded away in a couple weeks. Never came back. I could feel this treatment hitting the pathogen as I ran it. It produced a tingling sensation in the area that was very distinct. I ran it for longer times to clear it from my intestines, and still do run it occasionally. MAP is a slow reproducing pathogen, so it is pretty easily reduced using this method, in my opinion.

I have similar results concerning the H-Pylori. Since I have already posted that experiment, I will put a link in to that thread.

Here is the latest concerning H-Pylori:

http://www.crohnsforum.com/showthread.php?t=73402&highlight=H-Pylori

I learned from my wife's Lyme disease that symptoms and often disease is caused by pathogens. It is pretty simple in concept. Remove the pathogens, you remove the symptoms, and often the disease.

The problem with that is actually removing the pathogens, and identifying them. My wife had Borrelia Burgdoferi, Bartonella, and Babesia. That is what falls under the general heading of Lyme disease. Those are not even all the possible pathogens, they are just the ones she acquired, I treated, and she recovered from.

Sometimes it is just Borellia, but more often than not it is a complex of pathogens. I do not see any difference between Crohn's and Lyme disease in this respect. Crohn's may be just MAP, it may be just H-Pylori, it may be just Mycoplasma or any combination of the three or even more pathogens that are not yet associated with the disease. Not even mentioning E-Coli.

In some cases eliminating MAP may be enough. In other cases, such as mine, it will not be. It is not as simple as finding the one smoking gun pathogen, at least not for everyone with Crohns.

I am afraid that pinning hopes on MAP alone is going to disappoint some people and be a life saver for others.

Dr. Thomas Borady has done some of the best work with MAP and treating with antibiotics for the pathogen. Its the slow way to go about it, but at least he is addressing the disease directly, not just alleviating symptoms.

He is in Sydney, and maybe you should see him or at least read about his research. He is a very smart doctor.

I research any disease I am dealing with exhaustively. The only difference between myself and anyone else doing the same is I actually have a way of testing the research directly. Anyone can do the same, but 99% will not.

I have tested most all of the pathogens that have ever been mentioned that might be involved with Crohn's. Bubonic plague, measles, salmonella, actinobaccilus, Listeria, the list goes on. They might be involved with some cases of Crohn's, but I did not react to any of these. Of course it is possible that the frequencies did not work for these also, but I am symptom free at this time so I may not be 100% correct, but I am correct enough to live a normal life.

That's the condensed story. I have been treating disease in my family this way for close to a decade. There is a lot more than I cover here, but you get the idea.

Dan

 

[Bill Vasiliadis]

Thank you Dan, that sure is quite a story. Can you tell me what you mean by using frequency as a way of removing the pathogens?

You also mentioned integrative medicine, and I just so happen to be very close to a clinic whose whole philosophy is centred around the integrative approach. May give them a call and book an appointment, even though they are rather expensive.

 

[D Bergy]

There are several different devices that can accomplish the job, but the one I use is a GB-4000 frequency generator and a MOPA transmitter. You can also build your own if you are electronically inclined. Basically, you produce specific frequencies that will resonate with a given pathogen to damage, weaken or out right destroy that pathogen.

The opera singer shattering a crystal wine glass is often used as an example, although that is done using frequencies converted into sound. The frequencies used for this type of experimental treatment are not converted into sound, they are conveyed using a plasma tube or contacts as the original wave forms. You have to be quite accurate with the frequencies. If you are off by much, it does nothing.

Most of the real solid research took place in the 1930's by Royal Rife, the inventor. It is not new by any means. The history of the inventor, the device and such is available at this site.

www.rifevideos.com

It never was approved as a medical treatment for various reasons, none of them related to whether it worked or not.

There is new Cancer research being done currently by Dr. Anthony Holland using exactly the same method. He is not a medical doctor, but has his doctorate in music. Seems natural enough as he is dealing with frequencies. His site is:

www.novobiotronics.com

He also has several videos of various organisms being destroyed by frequencies prior to his Cancer research. Search his name and you will find all kinds of interesting information.

I was pretty skeptical about the whole thing when I originally found out about it, but I also noticed that the people that were using the method were not stupid people. They were doctors, engineers, biologists along with more ordinary people like myself. Doctors that dealt with Lyme disease would describe patients that used Rife machines as "the ones that don't come back anymore".

I bought my original machine used because I did not want to lose any more money if it failed, than I had to. I had to find a way to treat my wife that did not involve antibiotics or any oral treatment really. She could not tolerate any treatment that she had to swallow, for very long. Her stomach would give out. I really had no other options.

Luckily, this worked really well. Lyme and the coinfections are some of the most difficult pathogens to eliminate. Every one of the infections are exceptionally difficult to eliminate completely. Far more difficult than the pathogens involved with my Crohns.

I would prefer an integrative doctor if there was such a thing in my area. At least they would have a clue about how I am treating myself. I pretty much just see the doctor to get two tests. A vitamin D and B12 test to keep my levels up. I don't have any problems to address. Hope it stays that way.

Dan