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Who's tried LDN, and what are your results? PART II

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Ulcerative Colitis
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Posted 9/30/2011 11:40 PM (GMT 0)
Hopeful4uc,

Wow - that's great news!

So glad all is going well, you're able to eat all sorts of foods and feel great!

Posted 10/1/2011 1:33 AM (GMT 0)
Been on LDN since March 2009. Doing better now after adj Pred to 20mg. I read several posts in different forums about what does of Pred to take with LDN...also it does take some time for LDN to work. I like to think to LDN is helping but it's hard to tell when you're taking so much stuff.

Well see once I get into full remission and stop taking some of the other meds.
Posted 10/1/2011 1:53 AM (GMT 0)
Insofla- just wanted to check in. Feeling great. Eating what ever I want. I actually have my life back. I'm always out and doing things so I haven't been on here much. My GI couldn't believe it when he saw me two weeks ago. Because of my progress he is putting another patient on the LDN. Hope all is well with everybody else.
Posted 10/1/2011 2:11 PM (GMT 0)
Peace&Harmony,

Glad you are doing well.

Posted 10/1/2011 2:12 PM (GMT 0)
Boxermom2,

Box that is such great news!

Yes, I'm sure your doc was quite surprised.

So, he's really going to prescribe it for other patients? Wow...

Posted 10/2/2011 8:56 PM (GMT 0)

InSouthFla,

 

First, thank you so much for taking the time to send me all the information!

 

The reason I contacted you is because I am in South Florida too, Boca Raton to be exact. I don't want to have to go to NY to get an Rx for LDN if I dont have to. The doctor I am refering to in NY is Dr.Hoffman, have you heard of him? He sets a whole plan with nutritionist etc, at a very high price and no insurance :( So if you can tell which doctor prescribed to you i might go to him/her if its close by, otherwise i will call the pharmacy like you suggested.

 

Are you still on Scd or Ldn allowed you to introduce non Scd foods?

 

I totally agree with you on Jini Patel, I just bought the book and it has a lot of good info, but i buy the products at the local vitamin shoppe or Whole foods market. Also I cannot find anybody outside her website, or forum that followed her protocols with success, so I really don't know....

 

My daughter currently takes pentasa 3x day but no other meds., she takes probiotics, Natren Healthy Trinity, I will switch to VSL as soon as I only read good things about it. I give her L-glutamine on an empty stomach to stop diarreah and it works great, but I just recently started giving it to her as a supplement with her shakes, my problem is with the dosage, i just give 1/3 of the adult dosage for everything, also takes multivitamins from GI prohealth as they are SCD compliant. Omega 3, D3 (800 IU per day, probably not enough....), boswellia, DGL licorice, digestive enzymes. I cannot find a liquid B vitamin that has no sugar. I need a good naturopath I didn't find one either. I put all this together just from reading online, and thanks to great people like you!

 

Also I wanted to ask you what do you think about treating UC as an infeccion with natural antibiotics as Wild oil of oregano, olive leaf extract, colloidal silver etc....

 

Sorry again for all this questions. I think i am looking for a miracle sometimes, but I also know that something is working, she is almost pain free, ocasionally gets tummy ackes and joint pain but it doesnt last as long as it used to. But the future scares me....

 

Thank  you again for all your help, and I really hope that what you are doing keeps working for you!

Posted 10/2/2011 11:49 PM (GMT 0)
titusmom,

Hi there. I just sent you an email.


 

Posted 10/3/2011 2:41 PM (GMT 0)

Flu Shot or eating fresh pork!  Ugh!  confused I think either one messed me up.  Working at the hospital employees are strongly encouraged to get the flu shot.  I took it last year no problems, but I was on Humira.  I'm just experiencing looser stools...but now noticable blood, but bad smelling stools as well.  UGH!  rolleyes I will never eat pork chops or take the flu shot again.  So, the plan:  continue LDN, psyllium seek powder, VSL#3, get back on aloe vera juice.  And I will see how it goes...and I will be careful for awhile.

I guess I need to be very careful with messing with the immune system.

Keep you posted!

Posted 10/4/2011 12:17 AM (GMT 0)
titusmom,

I would recommend you call Skip's Pharmacy ( You can reach them at: 800-553-7429) and ask them for a local LDN prescriber, no?

Posted 10/4/2011 12:20 AM (GMT 0)
Hopeful4uc,

Sorry to hear about your setback.

I think it's the pork chops.

Hang in there - go back to the basics - SCD + supplements + IMO I would double up on the probiotics right now for at least a week, be careful with food combining.

I think if you do all that, you should be better within a few days.

Let us know.

Posted 10/4/2011 12:21 AM (GMT 0)

Hopeful4uc said...
Flu Shot or eating fresh pork! Ugh! [img]/community/emoticons/confused.gif[/img] I think either one messed me up. Working at the hospital employees are strongly encouraged to get the flu shot. I took it last year no problems, but I was on Humira. I'm just experiencing looser stools...but now noticable blood, but bad smelling stools as well. UGH! [img]/community/emoticons/rolleyes.gif[/img] I will never eat pork chops or take the flu shot again. So, the plan: continue LDN, psyllium seek powder, VSL#3, get back on aloe vera juice. And I will see how it goes...and I will be careful for awhile.

I guess I need to be very careful with messing with the immune system.

Keep you posted!


Wow that's interesting. I'd bet all my money on the flu shot being more at cause here than the pork chops. As long as the meat wasn't poisoned (or extra fatty, which chops usually aren't, unlike bacon) there's really no reason pork chops should cause that kind of reaction. Lean meats are classically one of the few things that almost all UCers can handle without issue.

Fascinating to think that challenging the immune system with a flu shot would screw up your colitis! Do keep us posted.
Posted 10/4/2011 1:53 AM (GMT 0)
I get the flu shot every year with no problems. Maybe it was the pork.
Posted 10/4/2011 2:13 AM (GMT 0)
She's right to stay away from both if either are suspect.

I still keep my money on the flu shot :-)
Posted 10/4/2011 8:46 PM (GMT 0)
Hello all...Good news first..been on LDN since August 12, 2011...at the same time got rid of bad case of candida and have been sympotom free ever since!! Loving life these days..I have had 2 nights 7 days or so apart with a bad night but clears up the next day..confusing, one I blame on eating figs..love em but those little seeds probably irritated me a bit. Not sure on teh other incidience. It is such a relief not to have to run for the wee room every hour and bleed every time. If not for this forum I would still not know of LDN. I go see my GI doc next week and have to tell him I quit taking Asacol in May and that I am using an alternative cure..hope he is happy I am doing so well! I am going to bring him the Dr. Jill Smith article of LDN if he is interested.

Anyway..good luck to all, I hope this lasts for a long time to come!
Posted 10/5/2011 12:07 AM (GMT 0)
jray1971,

That's great news.

Are you following any specific diet?

Please let us know your doctor's reaction and comments on the LDN, I am very curious as to how he will handle it.

Posted 10/5/2011 2:01 PM (GMT 0)
Are you following any specific diet?

Not really....I have pretty much laid off veggies as it seems like they go through me like roto-rooter, I am taking a fiber supplement. If I do eat them they are cooked. Otherwise I am eating what I want...Gluten free was really hard for me to stick with. I stay away from any seeded foods but other then that and veggies my diet is pretty normal.

I will post after my appointment, I am nervous to tell him I stopped the Asacol in May, but I needed to see if it made a difference not taking it and nothing changed with or without it.
Posted 10/6/2011 5:46 AM (GMT 0)
Hi i plan on starting on the oral LDN again but do not know which filler to get.

Jray1971, could you tell me which filler you're using?
Posted 10/6/2011 12:38 PM (GMT 0)
JaneC,

Welcome to the forum!

So glad you'll be starting LDN soon.

Here are my suggestions: stay away from the avicel, slow release fillers, and if you are lactose intolerant, then you shouldn't get the lactose filler either. The best filler to get is the sucrose which is the hypo-allergenic one.

Who's prescribing it for you, i.e. your GP, GI, or alternative doc? Was it a big deal to get it prescribed?


 

Posted 10/7/2011 2:26 PM (GMT 0)
Just wanted to post a quick update.

I was diagnosed last Friday with C Diff and I have no idea how long I had it for. All this time that I thought I was flaring, I actually had that, so I'm a little frustrated that I ended up on Prednisone.

Anyway, from what I can remember, (I stopped journaling around the week before I started LDN) I started feeling truly better when I started the LDN. That's when I stopped having to use Lomotil at bedtime or throughout the day. I know it boosts our immune system and I sure needed that with having C Diff! At this point I was probably having 3, sometimes 4 BM's in the morning and then fine the rest of the day.

Now that I'm on the Vancocin, I am only having 1-2 formed BM's with minimal blood every morning and able to eat pretty much whatever. I stopped the SCD because it was really hard to keep up with daily with having 2 kids and a busy schedule.

I am now tapering down my Prednisone and will be on 25mg as of Monday. I am counting down the days to get off this drug! I have the moonface, started seeing some facial hair :(, bloating of my belly, appetite ridiculous, and my mood swings...ugh. Thankfully, my husband can take it lol.

Hope everyone is doing well! Mom2girls, how are you doing on the Remicade?? Hope you're seeing improvement!
Posted 10/7/2011 3:15 PM (GMT 0)

InSoFla said...
JaneC,


Welcome to the forum!

So glad you'll be starting LDN soon.



Here are my suggestions: stay away from the avicel, slow release fillers, and if you are lactose intolerant, then you shouldn't get the lactose filler either. The best filler to get is the sucrose which is the hypo-allergenic one.



Who's prescribing it for you, i.e. your GP, GI, or alternative doc? Was it a big deal to get it prescribed?

Thanks! My osteopathic PCP prescribed it.
I called Skip's today and he recommended the "Avicel" filler as my first choice over any other fillers.

And a lot ppl are using the Avicel filler with no issues according to him.
Posted 10/8/2011 10:29 AM (GMT 0)
mamabee,

Sorry it took so long for your doc to test you for the c-diff. BTW, which doc tested for it, your GI or alternative doc?

Especially now that you are on antibiotics, it's even more important for you to get some probiotics in you. IMO, you should double your usual VSL dosage.

What do you think?

Are you still on LDN?

I'm sure it will be of great relief to you once you get off the prednisone.

Posted 10/8/2011 10:31 AM (GMT 0)
JaneC,

That's great.

With the avicel, just be on the look out for: bad headaches, terrible stomach pains, and D - those are the side effects I experienced, and hopefully you won't have any of those.

Let us know how it goes with the LDN. Good luck.

Posted 10/11/2011 11:03 AM (GMT 0)
My GI doc tested for it. I am still on LDN and will continue that for the 6 months and after if I notice it's helping me still.

I am still only doing the VSL 2x's a day b/c if I do more, I run out faster and then my insurance won't cover it until the date I "should" have run out. Is there another probiotic you could recommend that I could add? I've heard of Floraster (sp?). Is that good? I also have my SCD yogurt.

I'm now on 20mg of Prednisone. I've only had 1-2 BM's this last week with NO blood! Formed stool. It's unreal!

Thanks for checking in...hope you're doing well!
Posted 10/11/2011 1:54 PM (GMT 0)
mamabee,

Glad you are doing better.
You should add this probiotic: Jarrow Formulas Saccharomyces Boulardii + MOS, I add it to my VSL #3. It's great for candida issues too, especially since you're on antibiotics.

Let me know how it goes.

Posted 10/11/2011 10:31 PM (GMT 0)
I subscribe to the LDNandIBD yahoo group http://health.groups.yahoo.com/group/LDNandIBD/.

A file was just posted stating that the TD LDN does not work according to a specific researcher. Apparently the cream doesn't penetrate far enough into the skin to be circulated by the blood. It more like a wound healer as it just sit in the area it was rubbed into.

I've switched back to the oral so hopefully I'll start seeing better results.
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