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INSOFL are you still in remission from LDN?

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Posted 3/26/2012 4:31 PM (GMT 0)
HI I was jsut wondering in you were in remission still from the LDN? You said lobster was giving you formed bm's but weren't you already in remission? JW how you were doing on the LDN? Are you finding it's not a cure all? I'm still on the LDN cream, along with FLora balance (for yeast) vit D3 astaxathin, kind of got away from the L-glutamin, but will start again soon.

Hope all is well!

Posted 3/26/2012 4:42 PM (GMT 0)
i am curious too! i got my LDN in the mail but haven't started it yet. i am planning to start fecal transplant and am hoping that will do the trick. LDN is my back-up plan.
Posted 3/26/2012 11:44 PM (GMT 0)
therearemiracles,

Hi, long time....thanks for reaching out.

Yes, I am still in remission from LDN. Although I have no blood, no urgency, no cramping, no pain, and normalish BM (going once a day), they are NOT the perfect BMs I used to have pre-UC.

I am still on LDN and happy that I am on it.

How are you doing on the LDN?

Posted 3/26/2012 11:56 PM (GMT 0)
Joanna, glad you finally got the LDN.

How did you manage that?

How much arm-twisting did it involve?

BTW, which LDN did you get finally? Oral (which filler) or transdermal?

When will you be starting with the FT?

 

Posted 3/27/2012 12:26 AM (GMT 0)
INSoFla

When was your last scope? Have you had one since LDN? What did it show as far as inflammation?
Posted 3/27/2012 12:42 AM (GMT 0)
Seasons,

How are you doing? Any progress at all?

I have not had a scope since my UC diagnosis, and 6 months later I started LDN.

Per my GI, I am due for another scope approx. Sept. 2013. I haven't been back to him in 1 year now, and I'm sure he's not happy about that, but I see no reason to spend $$ for him to tell me everything's ok.

Since I have such lousy insurance and everything is out of pocket, I am not rushing to get it done before as I'll have to pay close to $5000! shakehead

 

Posted 3/27/2012 1:11 PM (GMT 0)
HI INSOFL, I'm doing ok. I seemed to be doing better with saccaromyces boulardi MOS probiotics, like they were making me just go to the bathroom once in the morning, cleaning myself out, never formed always urgent, then I switched to Flora Balance which is suppose to be for yeast issues, which I know I have, and that isn't helping much either right now. Los of bm's.  I think I'm detoxing! Very tired, felt achy the other day, felt drunk one day, and so one. I'm still on LDN I just like knowing I'm boosting my immune system, I never want a cold or phenmonia again! I'm glad you're doing great!

 

Posted 3/27/2012 1:57 PM (GMT 0)
If there is any improvement it's really hard to tell. I get something different in the toilet every time I go. Positives blood is a little less than it was, getting more formed stool in the am. Negatives, still too much blood, pain and at night passing liquidy b and m. Also still getting up at least 1x in the night to pass the same.

I see new gi today.

This is new for me. I was good for years even off meds. Some slight blips and only a couple minor flares that responded well to Prednisone.

Glad you are doing well InSoFla. I will keep you posted. There is another post with an update about 40mg if you want to read more....
Posted 3/27/2012 2:33 PM (GMT 0)
insofla, i found someone online who cured himself with FT and he had a lot of leftover LDN. he sent me what he had haha it's kind of shady but i was desperate. my doctor wouldn't give me a prescription for it. the tabs are 50 mg.

well, my mom wants to do my first fecal transplant in the hospital so we are going to harrisburg. the clinic there does it once with a colonoscopy and then i'll repeat it at home. personally, i think it's a waste to drive all the way there but it's her poop so i won't get it if we don't.
Posted 3/27/2012 3:20 PM (GMT 0)
HOly cow bananagirl, 50mg is way too much to start on LDN. I was taking 4.5 mg not 50mg, I don't recommend that. Be careful
Posted 3/27/2012 3:47 PM (GMT 0)
therearemiracles, haha i know! i am dissolving the 50 mg tab in 50 ml of water and then using a dropper. i am starting at 1.5 mg and working up. the guy i got them from said his doctor would only prescribe 50 mg tabs so that's what i gotta work with.
Posted 3/27/2012 4:20 PM (GMT 0)
Yeah, you can buy Naltrexone online without a prescription from India, and in that case you are getting the 50mg pills. My LDN is costing me $34 per month, but if you buy the 50mg tabs online and dissolve them, it comes out to less than $10 per month. I may do that at some point.
Posted 3/27/2012 4:45 PM (GMT 0)
ok good! Thanks for letting me know. I hope your FT works for you! I'm trying LDN and now flora balance for yeast. I'm on DHEA too, that was low for me.
Posted 3/27/2012 4:50 PM (GMT 0)
I started LDN on Friday and have not gone to the bathroom more than once a day since.. I am sure it is placebo as I don't think LDN acts that quickly and I was getting well quickly but I was still having mild urgancy and going to the bathroom 3-4 times a day.


Everyone should seek LDN if they have UC or Chrons, there are no side effects (except for the wild dreams for the first few weeks, but I don't count having vivid dreams in the same category as say moon face) and it has been wildly successful for some. My insurance doesn't cover it and I went to the most convenient compounding pharmacy (around my block) and it comes to $48 a month. If you seek out a better deal you could easily get it without insurance for $35-$40 a month, I spend in excess of $150 on acne creams a month because of the prednisone! LDN is a bargain - everyone needs to try it.

FTR; I am also on 6MP.
Posted 3/27/2012 5:06 PM (GMT 0)
therearemiracles, I am on DHEA now too. My LDN doc urged me to have that tested and it was too low.

Brian, I agree, everyone should try LDN. Did you start at the full dose of 4.5mg? My doc had me take 1.5mg for two weeks, 3.0mg for two weeks and now I am at the 4.5mg. He did that to avoid the sides, which it did, although I don't see what the big deal with those sides was anyway.
Posted 3/27/2012 5:21 PM (GMT 0)

Gonk said...
therearemiracles, I am on DHEA now too. My LDN doc urged me to have that tested and it was too low.

Brian, I agree, everyone should try LDN. Did you start at the full dose of 4.5mg? My doc had me take 1.5mg for two weeks, 3.0mg for two weeks and now I am at the 4.5mg. He did that to avoid the sides, which it did, although I don't see what the big deal with those sides was anyway.

My doctor gave the choice to me and I choose to start at the full 4.5mg. Vivid dreams is a non issue in my opinion and a lower appetite was a desirable effect considering the ravenous hunger I was having because of the prednisone.
Posted 3/28/2012 12:26 AM (GMT 0)
therearemiracles,

Sounds like you are detoxing. Don't forget to drink plenty of water while detoxing.

I'm glad you're still on LDN. I don't see any down  side to being on it, only good things - as your immune system gets geared up.


bananagirl,

Ok, so that's how you got your LDN. I think that's great.

And I hope the FT goes well for you and puts you in remission.

 i think it's a waste to drive all the way there but it's her poop so i won't get it if we don't.

So, she's putting strings on her poop, haha - too funny!

When are you going for the FT?

Let us know how it goes?

 

Posted 3/28/2012 12:30 AM (GMT 0)
Brian Legacy,

You're absolutely right: everyone should give LDN a try, especially before going to the biologics or surgery.

Don't sell LDN short, it may not be placebo effect. I got results after day 3 of transdermal LDN.

Personally, I love the vivid dreams, but apparently that only happens in 25% of people taking LDN, so it really isn't a good assessor of whether it's working or not.

Gonk,

BTW, which type of doc gave you LDN? Integrative, Holistic, Gastro or GP?

Posted 3/28/2012 12:43 AM (GMT 0)

InSoFla said...
Brian Legacy,


You're absolutely right: everyone should give LDN a try, especially before going to the biologics or surgery.


Don't sell LDN short, it may not be placebo effect. I got results after day 3 of transdermal LDN.



Personally, I love the vivid dreams, but apparently that only happens in 25% of people taking LDN, so it really isn't a good assessor of whether it's working or not.





Gonk,

BTW, which type of doc gave you LDN? Integrative, Holistic, Gastro or GP?

My Gastro is the prescribing doctor.
Posted 3/28/2012 12:28 PM (GMT 0)
My LDN prescribing doctor I suppose is what you would call a naturopath, although he does not call himself by that name I don't think. He is big in the anti-aging field as well.
Posted 3/29/2012 1:34 PM (GMT 0)
Hi - LDN is still working for me...gave me my life back. My stools are pretty good; but not necessarily like pre-UC. We need to remember that our cells in the colon are different; altered, but I have no urgency, they are formed, no blood. Only go about 1 or 2 times a day...morning maybe; but more afternoon and then maybe one in the evening. Milk is my big problem so I switched to Soy milk and all have been much better. Soy has the calcium, vit D, etc. just like milk. I can eat wheat; love my Special K fruit in the morning! I would try LDN; probiotics (one that works for you) and give it time. Know your body of what to eat and what not to eat; trial and error. Give LDN time; for me it took about 6 weeks and wow; what a blessing!!
Many thanks to this Forum for LDN information!! so glad I tried it!
Posted 3/29/2012 1:37 PM (GMT 0)
Hopeful4uc,

Great news.

Posted 3/29/2012 1:40 PM (GMT 0)
To all those of you who've tried LDN, Gonk, Hopeful, Brian, and any others I've failed to mention,

would you please be so kind as to post your progress on this thread:

https://www.healingwell.com/community/default.aspx?f=38&m=2338980&p=2

I would  greatly appreciate it.

Thank you.

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