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Posted 3/9/2009 10:34 AM (GMT -5)
I've been on LDn for 7 weeks now, but just 6 days on the recommended dose of 4.5mg, proir to this I was working up by 1.5mg and then 3.0mg. My mood and overall health has improved. The studies show those who took LDN at 4.5 mg saw a increased improvement or cease in their disease, so I'm hopeful a change is coming. I feel, however, bacteria is involved b/c I'm still having mushy stools with blood.

I had to be on antibiotics last week for bronchitis and I noticed (now twice in taking antibiotics) that my stools get formed and my inflammation is almost non existant. I'm still thinking there is a bacterial problem and I want to be tested for Lyme disease.

I live in Michigan, can anyone recommend a great doctor, that really does their home work and try to help find the cause. I think when I go to the doctor I'm not going to mention UC, b/c once i do they just lump me in that catagory and they say that can't help.

I've had chronic diarreah in the morning for 4 years, mushy, stinky stools which can indicate a bacteria problem.

If you can recommend a doctor in Michigan please email at lindac@westbranchair.com

Thank you and I will keep posting.

Blessings, Linda

Posted 3/10/2009 12:45 AM (GMT -5)
Ask your doctor, when you find one, about rifaximin. It's a HARDCORE antibiotic for traveler's diarrhea, and has preliminary studies that show it really works on UC. It's insanely expensive and very hard to get a prescription. Shameful, because the studies were overwhelming in efficacy.
Posted 3/10/2009 8:30 AM (GMT -5)

Thank you so  much, I will look into this. I have an appt with a Lyme disease doctor just to rule that out. I have a allergist appt as well to rule out yeast or enviromental issues. I have read, now that I'm at max doese for LDN, symptoms will get worse before getting better. I hope that is the case with me now.

Thank you again.  I have printed off the information and will share with my doctor.

Linda

Posted 3/10/2009 8:58 PM (GMT -5)
i didn't find rifaxamin hard to get, i think it depends on your drs knowledge of the drug and when to use it-my daughter always has it with her for backup.
and we believe it has helped her while waiting for other meds to kick in.
Posted 3/11/2009 6:39 AM (GMT -5)
Rifaximin has been known to only help about 50% of UC patients. It made things MUCH worse for me, but if you notice improvement w/ antibiotics, it might be worth a shot. I didn't have trouble getting it either (although I think I got the generic).
Posted 3/11/2009 8:22 AM (GMT -5)

my doc didn't have a problem giving it to me since i said I just came back from Mexico. I was on amoxicillian for bronchtis when I was down in Mexico two weeks ago, I'm afraid to start another round of antibiotics so soon. Do you know if amoxicillian and this Rifaximin are to totally different antibiotics? Once I was on Cipro do you know if that is for traverlers diarreah? I just don't want to repeat. I have never taking anything just for diarreah, but if Cipro or Amoxicillian is nearly the same as Rifaximin then I won't take it b/c I feel I've already been down that road.

Please advise if you know.

Thank You very much

Posted 3/11/2009 8:48 AM (GMT -5)
The three are completely different drugs. They are all antibiotics, but from three different families.
Posted 3/11/2009 9:11 AM (GMT -5)
would you try the Rifaximin since I have terrible diarreah since i just did amoxicillian two weeks ago for my bronchitis?

Posted 3/11/2009 12:42 PM (GMT -5)
I had a consult with my LDN doc he said don't do antibiotics right now, it can make it all worse. It said my digestive enzyme was missing betain to help digest my foods since I see food particules in my poop and I'm having "leaky gut" issues. He suggested I do the LDN cream since the LDN caps maybe too much for my gut right now while it's trying to heal. I'm getting more information as to where I put it on at and how much. I'm feeling very positive about all this. I will keep you posted.
Posted 3/12/2009 2:09 PM (GMT -5)

I'm getting a cream to use instead of the pills, I will rub it on the back of my knees, stomach or arms where ever it's a clean, hair free area. I've been reading a lot of the post of pain and overall feeling sick. I had that every day for so, so, so, long. Just recently and I do have to say I know the LDN has helped with my mood and over all feeling good. Seriously, I'm happy all the time and pain free except when I go to the bathroom which is in the morning (can be 1/2 to a hour running back and forth) and maybe once in a blue moon in the evening. My stools are not formed. I'm only at the max dose now for just a week, they said give it 4 weeks to see improvement.Also, my doc said the digestive enzyme that I was taking was missing beatine and he said I need this b/c it starts helping digestion right at the stomach. So I wanted to comment on this, the LDN increases your endorphines which makes you feel good. I notice now weather I'm having a bad day (a hour in the bathroom) when I get off the toilet, I'm not crying or I'm not depressed. I was having very dark thoughts that just weren't me, so I know this medication has helped me in that area. ALSO there's no side effects. When I was on asacol, canasa all the rectal and oral meds the side effects make me so sick, I couldn't function. I hope someone else will chime in who's on LDN can share their information too, so more and more UC'ers can look into it.

Posted 3/12/2009 4:27 PM (GMT -5)

OK, I'll chime in. lol.  I've been on LDN for about 3 1/2 weeks so I'm not up to the full dose yet.  I'll go up to 4.5 mgs. on Tuesday.  Before I started LDN, I was feeling really lousy from my UC symptoms...flu like, tired, just feeling horrible.  I didn't think the LDN was going to be enough to get me feeling better so I started taking some Entocort just to try to get me feeling better.  In the meantime, I got a horrible cold last week so I felt like total crap.  Sooooo, I haven't felt that great since starting LDN but I know it's because of where my disease was at when I started AND getting a horrible cold last week.  My cold is finally almost gone but I'm just so tired.  LDN is supposed to cause insomnia but I've been able to sleep just fine on it.  I've been very tired but I don't know if it's from the LDN, the disease, or having this cold.  It's a struggle to even get out of bed in the mornings.

My stools seem to have decreased, almost feeling constipated but I'm still having bleeding every day.  I'm probably going to the bathroom 2 or 3 times a day just to pass blood and then I'm having actual BM's every 1 or 2 days.  I'm hopeful that I can get the bleeding to stop (not sure how-I may try steroid enemas since ASA products do not work for me) and then I'll feel like the disease is under control.  It all still feels so unpredictable and I don't know when I'll have to "go" so it's still challenging to leave the house.

I've been having really bad joint pain since starting LDN but it could be because I started Entocort at the same time.  I can't wait to get up to the 4.5 mgs. and see how things progress.  This has been a really rough few months for me and I really can't say that being on LDN has made me feel better, but like I mentioned above, I attribute it to where I was with the disease and getting that cold.

Posted 3/24/2009 11:38 PM (GMT -5)
How is the LDN going? I am thinking of trying it. I already mentioned it to my gastro, but as usual he is not interested. Any chance there are people in the Vancouver, BC area on LDN?
Posted 3/25/2009 8:46 AM (GMT -5)
Hi Robray,
Yes I would definetly give it a try. I'm 3 weeks in on the 4.5 dose that is recommended, I'm now seeing a improvement. My blood is less, I'm feeling more energy, less trips to the bathroom with no side effects. YES, I would try it for sure! I don't know of a doc in BC, but can't you use a american doctor? I did my phone consult over the phone. John Sullivan 717-697-5050 you can ask.
You must stay away from gluten, sugar and dairy if you really want to help yourself heal.
Posted 3/25/2009 1:56 PM (GMT -5)
Is staying away from gluten, sugar and dairy something that is recommended by your doctor? I have already eliminated all that stuff and most recently rice, but I am curious if it is something you have found.
I could probably get LDN through an american doctor, but it would be a little challenging. I might have to go to the states to get the prescription filled or order it online.
Posted 3/25/2009 2:07 PM (GMT -5)

Hi Robray,

Call John Sullivan's office and ask about phone consult over the phone. Yes, it has been recommended by docs to stay away from gluten, sugar, dairy, rice and corn b/c those break down to sugar in the body, but I noticed on my own I felt better being off it too. I really feel LDN has helped me turn another corner with my UC. I'm actually eating and eating a lot! I use to take a bite of food, fly to the toilet and not eat anything more. I look and feel better and not so sickly like I was. I also use to feel like I was sitting with a softball inside my butt, it hurt to sit from the inflammation and now I don't feel that hardly at all. My bathroom trips in the morning have gone down as well as the time I spend in there. I know I have allergy issues. "miss" from this forum (and I lost her email) has been on LDN and she's have normal BM's and it's worked out great for her. I'm entering into week 4 on 4.5mg of LDN, this is when they say the "change" should take place or they noticed this is when it happens.

Posted 3/25/2009 4:50 PM (GMT -5)
Aw man, I don't think I could cut out sugar! The only foods that have bothered me are dairy and spicy.

Posted 3/26/2009 2:16 PM (GMT -5)

I've been on LDN for a little over amonth now, just started the 4.5 dosage last night.  Since I started it my UC type symptoms have been reduced, and I am really happy about this.  Hopefully I'll be able to start tapering off the Lialda soon.  I'm waiting for the go ahead from my alternative doc that is prescribing the LDN.

When I first saw this doc, he put me on a regimen of supplements and vitamins, some dietary changes along with the LDN.  One of the supplements I said no to outright, extra stomache acid (I already get heart burn!), but I did start taking the vitamins D & E, plus zinc and some digestive enzymes.  I also made the dietary changes to a degree, limiting intake of sugars, fats, and wheat products, and cutting out dairy totally.  All in all my GI tract feels better than it has since my UC dx, but I'm still getting the fatique, which to me means I've still got some issues.  I'm not real happy about the extra supplements because one of my goals is to reduce the number of pills I take daily, but I'm not going to argue with the results so far.

I'll update more on the LDN when I've been on it longer, but I wanted to throw my two cents into the discussion now. 

Posted 3/26/2009 2:25 PM (GMT -5)
beartooth-your fatigue could be a result of the LDN. It's made me pretty tired since I started taking it. Every time I've increased my dose, I've had several days of fatigue. I'm suffering from really bad joint pain (something I've never had before). I posted about it on the LDN Yahoo board and someone suggested that it could be from increasing to 4.5 mgs. Maybe my body can't tolerate that high of a dose. I wondered the same thing. How can a 120 lb. female be on the same dose as a 250 lb. male? I'm going to go back down to 3 mgs. and see if the joint pain eases up.
Posted 3/26/2009 2:29 PM (GMT -5)

Good job Beartooth,

I'm switch from the pill to the cream tonight b/c I'm having GI issues with food and allergies of some sort. I want to see if this helps me more. I have chronic diarreah that is so foul smelling I can't stand it, I don't know where it's coming from. I meet with a allergist next month.  I'm cutting out eggs b/c I think that's a problem for me. I'm starting back with the chicken soup to get in line.

I will keep you posted about the cream.

Posted 3/27/2009 4:00 PM (GMT -5)
Glamourgirl,

I think the exhaustion is tied to the UC and not the LDN. I've been dealing with tiredness ever since diagnosis. There is some thought that the tiredness is related to the 5ASA I take, but until i get the okay from my doc, I'm not stopping the Lialda. When I stopped taking Asacol I experienced my first full blown flare that lasted 6 months. I'm not willing to that until my doc and I agree that I'm stable on the LDN. Thanks for the tip though. Hopefully the LDN will work out for you and the tiredness you're experiencing will go away with time.
Posted 3/30/2009 1:01 AM (GMT -5)
Thanks for the contact info for John Sullivan.

I spent a bunch of time reading the LDN yahoo group. It reminds me of the SCD group when I was following SCD. I am still following SCD right now because of the flare I am in, but I find the yahoo group format so tough to read. Anyway, I got a contact for a doc in my area that may be able to prescribe LDN for me. I am going to give them a call on Monday.

One thing I noticed when reading the LDN group was that I don't see lots of UC'ers on there saying they are 100% on LDN. It could be the format, but I am not deterred.
Posted 3/30/2009 8:33 AM (GMT -5)

I'm stopping LDN for a week and reintroducing the cream at a lower dose. My symptoms were not any better as I thought they were. I'm contact Dr. Sullivan today to see if he'll call my allergist and see if he can get me in earlier. This is ridiculous, I'm 4 days gluten free, no real improvement on that either, what the heck is wrong with me. I'm thinking it's bacteria as I suspected years back, even my natural path says I have Bad bugs in my gut and take olive leaf but I'm not getting any better. Saturday I was doing great and then driving home at 10pm at night wtih a friend, cramps and I couldn't hold back poop and I pulled and went on the side of the road, all over me, got back in the car and smelled to heck and it was so embarrassing. This is not normal I don't think for UC. I will keep you posted as to what Dr. Sullivan says, however, I did talk to other ucers that say they are in complete remission, so don't give up hope on LDN, some people it works for and some it doesnt.

Linda

Posted 4/8/2012 2:59 AM (GMT -5)
Hi Robray, I am wondering if you are able to provide me with the contact information for the practitioner in Vancouver, BC, that prescribes LND. I am in the greater Vancouver area and have an old school specialist that would most likely not consider this treatment option.

Thank you.
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