I just received a prescription for LDN from a naturopath today. I am also gaining access to high quality THC / CBD cannabis oil and will be doing both, starting in the coming week
So going to take this opportunity to document my experiences here on this thread.
I've never done a background profile on here or posted much to date, so here's the outline. I'll try and be brief and to the point but there's a certain amount of context that is important:
Diagnosed in Fall of '11 with Ulcerative Colitis after experiencing a strange constipation, blood in the stool and mucus in the toilet. This first GI was rude and gave me almost no information other than throwing some chemicals my way (Pentasa).
When I was already into a severe flare-up that ended up lasting 4 or 5 months, dropped almost 40 pounds, malnourished ... went to another GI that happened to notice that the perianal abscesses that I had been dealing with off and on over the past 15 years?
Yeah: that would be an indication of Crohns - an indication that the first guy completely failed to see (even though I told him about the abscesses, and he was staring right at my ass when he did the colonoscopy). So the diagnosis become Fistulizing Crohn's Colitis - the abscesses had always put me in the hospital for drainage and anti-biotics, but no-one had ever suggested the connection.
At diagnosis I immediately went on a pretty strict Paleo Diet and I've been on it since I've tried a number of supplements and dietary tweaks - including pro-biotics, fish oil (now coconut oil) and turmeric as regular part of my daily diet.
But I soon discovered that diet alone will not maintain or keep me in remission on it's own in my case. Going off the Pentasa temporarily, immediately put me in a flare-up at one point .... and not keeping away from my trigger foods while on Pentasa would not be enough either, because I tried it both ways. I need both (which this Medical Industrial Complex is in complete delusional denial about, causing suffering for countless thousands or millions .. but I digress)
I've had 4 major flare-ups (lasting 3 or more weeks minimum) that all ended up with hospital trips to operate on the fistulas in the past 2 years since I was diagnosed. Because of my dietary care of my body I have been able to keep myself in remission the rest of the time with just Pentasa until now, and that's most of the time.
Unless I accidentally have dairy, which is Kryptonite for me -- it hard slams me into a flareup within 24 hours. Massive lactose reaction which leads to swelling, blood, fistulas go active, constipation for weeks etc etc u know the drill.
So this last time this is what happened - about 8 weeks ago. The dairy triggered the flare-up, I went to the GI to get flagyl and cipro to get pro-active about the perianal absess and fistula tracking I knew would be coming.
They ordered an MRI and I had the test done. Then I did not hear from them about the results, and when I started calling every day to find out, they did not return my calls.
When they finally got back to me, the receptionist says ".. we're seeing some complex fistula tracking, so we want to get you to a new Jons Hopkins trained Dr. sometime in the next few months" --- not telling me what that meant.
I looked up complex fistula tracking online and - no, this is not good news. Meanwhile I can feel a new abscess forming on my other buttcheeck. And I still have no breakdown on what these results mean from my GI directly (is there no ethics or law about giving timely results in a potentially critical situation? Again I digress ..)
After practically begging to talk to my surgeon to do this operation before I get driven down to the emergency room with some random Dr that might cut me wrong - I finally contacted him and he ended up doing more work on both the first fistula, and the new one on the left buttcheek. They kept me in the hospital for 5 days after the op, on intravenous anti-biotics to keep these fistulas down.
When I finally got the MRI results - sure enough, this showed a few fistulas tracking down around my colon. My diagnosis is now "Complex Fistulizing Crohns Colitis". That's the bad news.
The good news is as of this week things have finally stabilized and I'm in going into remission, bowels almost back to normal, fistulas drying up and I can walk again and sit down to work behind the laptop and etc.
The corporate drug dispensers we now call 'doctors' have offered me Humira as the next logical step. I'm really not OK with that. I have a month to go before my appointment with the Jon Hopkins guru - who is most likely going to try to convince me that there's no other option than to go on a chemical concoction that might end up killing me through lymphoma and / or other infection, and has a 30% chance it will work at all, and less than 30% it will keep working more than a year if it does.
Also - I am pretty firmly convinced now that their paradigm of using emergency anti-biotics to stop the fistula progress is digging a deeper hole. One of the root causes of IBD is gut dysbiosis:
Something goes wrong with the microbiota in the gut. The population is compromised - it is out of balance and the proper functioning of that system is fundamental to the immune system. Antibiotics can kill of the immediate problem of bad pathogens growing out of control, but they also kill off much of the beneficial populations - the safeguards against these bad pathogens and this allows them get out of control more easily in the future.
I believe this is why many people that do not respond to medications after a while get dragged down and get to the point where they are cutting our intestines out - its because their paradigm of treatment is ultimately digging a deeper and deeper hole for the patient until they finally run out of options.
So I decided to contact a reputable integrative medicine center in my area. I told them over the phone that I was interested in LDN - as one of the final choice I have left before biologics - and made sure they had someone on staff that could prescribe it if they thought it was in my best interest.
Sure enough, they did. So I will be filling the prescription this week and reporting on my progress over the next month before I see Jons Hopkins guru Doctor
They will be helping me address the gut dysbiosis in ways that go beyond simply taking high quality, high potency probiotics. I was confident in talking to him today that he has a good game plan for doing so.
Additionally, I will be taking regular doses of quality THC/CBD RSO oil as supplies will permit. Unfortunately I will not doing an empirical study doing them one at a time, so it will not be easy to tell which of the treatments or both are working.
But I will definitely be able to give some insight going forward for anyone who is interested. I know there are a lot of sick people out there that are very excited and hopeful about both of these treatments so hopefully I will have some good new for you.
So going to take this opportunity to document my experiences here on this thread.
I've never done a background profile on here or posted much to date, so here's the outline. I'll try and be brief and to the point but there's a certain amount of context that is important:
Diagnosed in Fall of '11 with Ulcerative Colitis after experiencing a strange constipation, blood in the stool and mucus in the toilet. This first GI was rude and gave me almost no information other than throwing some chemicals my way (Pentasa).
When I was already into a severe flare-up that ended up lasting 4 or 5 months, dropped almost 40 pounds, malnourished ... went to another GI that happened to notice that the perianal abscesses that I had been dealing with off and on over the past 15 years?
Yeah: that would be an indication of Crohns - an indication that the first guy completely failed to see (even though I told him about the abscesses, and he was staring right at my ass when he did the colonoscopy). So the diagnosis become Fistulizing Crohn's Colitis - the abscesses had always put me in the hospital for drainage and anti-biotics, but no-one had ever suggested the connection.
At diagnosis I immediately went on a pretty strict Paleo Diet and I've been on it since I've tried a number of supplements and dietary tweaks - including pro-biotics, fish oil (now coconut oil) and turmeric as regular part of my daily diet.
But I soon discovered that diet alone will not maintain or keep me in remission on it's own in my case. Going off the Pentasa temporarily, immediately put me in a flare-up at one point .... and not keeping away from my trigger foods while on Pentasa would not be enough either, because I tried it both ways. I need both (which this Medical Industrial Complex is in complete delusional denial about, causing suffering for countless thousands or millions .. but I digress)
I've had 4 major flare-ups (lasting 3 or more weeks minimum) that all ended up with hospital trips to operate on the fistulas in the past 2 years since I was diagnosed. Because of my dietary care of my body I have been able to keep myself in remission the rest of the time with just Pentasa until now, and that's most of the time.
Unless I accidentally have dairy, which is Kryptonite for me -- it hard slams me into a flareup within 24 hours. Massive lactose reaction which leads to swelling, blood, fistulas go active, constipation for weeks etc etc u know the drill.
So this last time this is what happened - about 8 weeks ago. The dairy triggered the flare-up, I went to the GI to get flagyl and cipro to get pro-active about the perianal absess and fistula tracking I knew would be coming.
They ordered an MRI and I had the test done. Then I did not hear from them about the results, and when I started calling every day to find out, they did not return my calls.
When they finally got back to me, the receptionist says ".. we're seeing some complex fistula tracking, so we want to get you to a new Jons Hopkins trained Dr. sometime in the next few months" --- not telling me what that meant.
I looked up complex fistula tracking online and - no, this is not good news. Meanwhile I can feel a new abscess forming on my other buttcheeck. And I still have no breakdown on what these results mean from my GI directly (is there no ethics or law about giving timely results in a potentially critical situation? Again I digress ..)
After practically begging to talk to my surgeon to do this operation before I get driven down to the emergency room with some random Dr that might cut me wrong - I finally contacted him and he ended up doing more work on both the first fistula, and the new one on the left buttcheek. They kept me in the hospital for 5 days after the op, on intravenous anti-biotics to keep these fistulas down.
When I finally got the MRI results - sure enough, this showed a few fistulas tracking down around my colon. My diagnosis is now "Complex Fistulizing Crohns Colitis". That's the bad news.
The good news is as of this week things have finally stabilized and I'm in going into remission, bowels almost back to normal, fistulas drying up and I can walk again and sit down to work behind the laptop and etc.
The corporate drug dispensers we now call 'doctors' have offered me Humira as the next logical step. I'm really not OK with that. I have a month to go before my appointment with the Jon Hopkins guru - who is most likely going to try to convince me that there's no other option than to go on a chemical concoction that might end up killing me through lymphoma and / or other infection, and has a 30% chance it will work at all, and less than 30% it will keep working more than a year if it does.
Also - I am pretty firmly convinced now that their paradigm of using emergency anti-biotics to stop the fistula progress is digging a deeper hole. One of the root causes of IBD is gut dysbiosis:
Something goes wrong with the microbiota in the gut. The population is compromised - it is out of balance and the proper functioning of that system is fundamental to the immune system. Antibiotics can kill of the immediate problem of bad pathogens growing out of control, but they also kill off much of the beneficial populations - the safeguards against these bad pathogens and this allows them get out of control more easily in the future.
I believe this is why many people that do not respond to medications after a while get dragged down and get to the point where they are cutting our intestines out - its because their paradigm of treatment is ultimately digging a deeper and deeper hole for the patient until they finally run out of options.
So I decided to contact a reputable integrative medicine center in my area. I told them over the phone that I was interested in LDN - as one of the final choice I have left before biologics - and made sure they had someone on staff that could prescribe it if they thought it was in my best interest.
Sure enough, they did. So I will be filling the prescription this week and reporting on my progress over the next month before I see Jons Hopkins guru Doctor
They will be helping me address the gut dysbiosis in ways that go beyond simply taking high quality, high potency probiotics. I was confident in talking to him today that he has a good game plan for doing so.
Additionally, I will be taking regular doses of quality THC/CBD RSO oil as supplies will permit. Unfortunately I will not doing an empirical study doing them one at a time, so it will not be easy to tell which of the treatments or both are working.
But I will definitely be able to give some insight going forward for anyone who is interested. I know there are a lot of sick people out there that are very excited and hopeful about both of these treatments so hopefully I will have some good new for you.
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