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Transdermal LDN put me in remission!! PART III

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Transdermal LDN put me in remission!! PART III  
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Posted 6/7/2011 5:43 AM (GMT -7)
Here is a link to Part II:

Transdermal LDN put me in remission!! PART II

www.healingwell.com/community/default.aspx?f=38&m=2105367
Co-Moderator, UC Forum
Age 55. Diagnosed UP 1983, UC 1986
Asacol - 16 pills/day,
Metamucil - 2 doses/day
VSL#3DS 2/3 x daily, Multivitamin, Calcium and D
homemade yogurt each day
rowasa, Canasa
coming off mini-flare...
Son, 17, dx pancolitis 2007, in remission

Post Edited (songlady) : 6/7/2011 7:49:10 AM (GMT-6)

Posted 6/7/2011 7:01 AM (GMT -7)

I feel like such a fool!

I was doing so well, and then I couldn't resist the temptation and had half a dozen chocolate caramels - they were so yummy, but not worth paying the price for it now :(

I guess sugar, and probably HCF too?

And I woke up in agony from joint and bone pains (much more severe than usual) at 3am - felt like my legs, and joints were on a slow fire. And then when I went to the bathroom the bleeding was back at a 4!

Well, to be fair, I'm having some big stress issues currently again.

I feel so stupid. 1 step forward and 4 giant steps backwards....

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/7/2011 7:02 AM (GMT -7)
songlady,

thank you for doing a Part III

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/7/2011 8:13 AM (GMT -7)
I have no input regarding Transdermal LDN, just wanted to say not to beat yourself up too much. You are human, after all. Just get back on that horse again and you'll regain those four steps you went back.
Female, 44, Vancouver BC
Currently in remission
Posted 6/7/2011 9:25 AM (GMT -7)
 

thanks Serenity Now.

 

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/7/2011 12:18 PM (GMT -7)
InSoFla, I am sorry you've had a set back. Let's hope it is temporary and things are back on track in a few days. I have had some discouraging symptoms that lasted a couple of days and managed to turn around without a flare up occuring.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp
Posted 6/7/2011 1:21 PM (GMT -7)
InsoFl don't give discouraged you're doing so well. Just cut off the sugar again for a few days and see if that gets you back on track and let us know. It didn't work for me, but I'm doing combo antibiotic therapy and I'm liking it alot! I have my energy back and happiness too. Hang in there.
UC since '05, now sulfasaladine (4 pills a day),I've been on Rocephin shot weekly, for Lyme's disease, that's worked amazing for my gut issues of gas, bloating and pain. I highly recommend it!
Posted 6/7/2011 3:36 PM (GMT -7)
Well that about proves it. LDN needs help, and that means sticking to your diet! Same thing happened to me after i ate that godawful sugar-laden cornbread.

Sigh...

No worries. If you got into remission once, you'll get there again. We await your progress updates :-)
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.
Posted 6/7/2011 5:03 PM (GMT -7)
badslinke, therearemiracles, & notsosicklygirl,

Thank you for your encouragement and support - it really means alot.

Yes, I hope it's just a temporary set back.

Went back to straight protein only, and doubled up on my L-Glutamine - from 15 grams to 30 grams.

I guess I better do a Canasa suppository tonight too.

Hopefully, I'll have better news tomorrow.

Thanks so much for all your support.


Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/7/2011 5:32 PM (GMT -7)
I get those set backs too. You just can't help yourself sometimes. My downfall is chicken fajitas loaded with spicy fried onions and salsa. It just about kills me. Feel better InSoFla. Your our go-to person on this.
Sally (40yrs old)
UC since 2002
Humira and Remicade (discontinued), Asacol, Immodium, Rowasa, Canasa,Proctofoam,Transdermal LDN, Calcium, Vit D, Folgard, VSL#3, 6 Metamucil capsules daily.
Posted 6/7/2011 7:09 PM (GMT -7)
Thanks Boxermom.
Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/8/2011 6:38 AM (GMT -7)
Hope you recover quickly, InSoFla!
:]
21 male, NY
-Dx Pancolitis in 2008 Jan
Recent hos. discharge on 5/23/11
-LDN 2.25mg
-90min cardio exercise everyday
- On Pentasa, 40mg Prednisone(tapering from 60), Canasa(every two days)
-No HFSC, sugar/preservatives/additives, red meat, chicken(bloating), shrimps(antibiotics), non cooked veges
-On white rice+meat/mackerel+avocado+blueberries+homemade yogurt
-stopped all supplement/vitamin
Posted 6/8/2011 6:44 AM (GMT -7)
CollegeStudent,

Thanks.

How are you doing with the LDN? You started taking the oral LDN first? At what dosage?

How has your diet been?

How are you feeling??

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/8/2011 6:45 AM (GMT -7)
badslinke,

Have you upped your L-Glutamine yet?

Notice any difference?

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/8/2011 7:04 AM (GMT -7)

InSoFla said...
CollegeStudent,


Thanks.

How are you doing with the LDN? You started taking the oral LDN first? At what dosage?

How has your diet been?

How are you feeling??

It's my second day on oral LDN! I'm on 2.25mg. I'm taking it around 10-11pm.
I've been eating the same food, sort of getting sick of it. But feeling better.
Nothing other than white rice, steamed meat(no beef yet), cooked mackerel, blueberries, avocados with olive oil, homemade yogurt, OJ juice, boiled eggs and boiled pork chops(yuck).

I'm down to 2-3BMs per day. Big chunk piled up loose stool but at the same time it's not 100% diarrhea. No blood for about a week now. Still some pain when gas passes through.
And I've been exercising a lot.

I hope I can keep this up. There may be times when I will have to eat out(probably starve).
I find that any sauce/dressing except olive oil is problematic.

Let's all get into remission! Must hang on ;]
21 male, NY
-Dx Pancolitis in 2008 Jan
Recent hos. discharge on 5/23/11
-LDN 2.25mg
-90min cardio exercise everyday
- On Pentasa, 40mg Prednisone(tapering from 60), Canasa(every two days)
-No HFSC, sugar/preservatives/additives, red meat, chicken(bloating), shrimps(antibiotics), non cooked veges
-On white rice+meat/mackerel+avocado+blueberries+homemade yogurt
-stopped all supplement/vitamin
Posted 6/8/2011 7:08 AM (GMT -7)
College Student,

Sounds like you're making progress. That's good.

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/8/2011 12:31 PM (GMT -7)

LDN is not fullproof!  Since I had my Colocscopy and MRI in May I didn't get my stools back :(.  On Pred 40mg with LDN now. Hopeing to be able to use LDN as a maintenance drug.

There are just too many variables out there that can flare us..foods, stress, and other environmental issues. I learning to take it one moment at a time and try to learn something from those moments.

You can also play with the dose a little bit too. If you're taking 4.5mg you may consider trying 3.0mg to see if you come back.  Yes...it does work backwards too!

Good luck!

Diagnosed July 2010
flaring as Jan 2010
As of 5/25/2011 procitis is now pancolitis!!
Pred 40mg, started 6/4/2011
Transdermal LDN 4.5 mg 4/23/2011
Energy Multi-Plex / Vital-Zymes Complete / Microgestin (birth control), Magnesium for leg cramps
Posted 6/8/2011 7:01 PM (GMT -7)
InSoFla-- so sorry to hear about your setback! :( hang in there- you have found something which helps you - so if you go back to basics on diet and use whatever other "rescue remedies" worked in the past, LDN should help you bounce back fast. I really owe you some thanks for helping, through your thread and regular inputs to the thread, to get me to try LDN (oral in my case but it seems to be well tolerated) just as I was about to give up and go for j-pouch surgery after failing pretty much everything- I mean, I am fairly sure that had I not discoved LDN, I would have scheduled it for this very month, whereas for now it is completely and indefinitely backburnered again and I am actually starting to think that maybe just maybe I can sustain some long , multi-year remissions again ... so I am pulling for you big time. One thing I have noticed on LDN is that when I do have a bit of a bad day (though thankfully no full fledged flare days yet per se while on LDN)it seems to be much easier to arrest the descent than was the case pre-LDN... there is definitely something going on with this stuff in terms of short-circuiting the auto-immune cascade, yet apparently with non of the toxicity of garbage like biologics.

Post Edited (Probiotic) : 6/8/2011 8:07:07 PM (GMT-6)

Posted 6/9/2011 4:55 AM (GMT -7)
Peace&Harmony,

thanks.

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/9/2011 5:01 AM (GMT -7)
Probiotic,

Thank you for the encouragement.

Regarding:  I really owe you some thanks for helping, through your thread and regular inputs to the thread, to get me to try LDN ... just as I was about to give up and go for j-pouch surgery after failing pretty much everything- I mean, I am fairly sure that had I not discoved LDN, I would have scheduled it for this very month, whereas for now it is completely and indefinitely backburnered again

Thank you. Now,  that means the world to me - to know that I have helped you prevent irreversible surgery :)

Please keep us posted on your progress.


 

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/9/2011 5:21 AM (GMT -7)

InSoFla said...
Probiotic,


Thank you for the encouragement.



Regarding: I really owe you some thanks for helping, through your thread and regular inputs to the thread, to get me to try LDN ... just as I was about to give up and go for j-pouch surgery after failing pretty much everything- I mean, I am fairly sure that had I not discoved LDN, I would have scheduled it for this very month, whereas for now it is completely and indefinitely backburnered again


Thank you. Now, that means the world to me - to know that I have helped you prevent irreversible surgery :)



Please keep us posted on your progress.

Glad to pay back any encouragement! By the way, you are not alone either (ditto badslinke etc) in setting oneself back via a little temptation... I allowed myself a very small indulgance the last couple days in adding some select dairy that has previously set me back- some greek yogurt (Fage) plus a bit of cheddar cheese with some burgers, plus a few tablespoons of almond butter- and today I am feeling some gut pain and some softer stool. It's natural to try and push the dietary envelope a little when we feel we have found our therapeutic holy grail- alas it seems we often have to keep relearning the hard way that we need to hold the line on not yielding to temptation just becuse of a few good weeks. I am using my own rescue remedies of peptobismol plus keeping up with tons of glutamine and probiotics (taken at least a few hours apart from the pepto).

peace and harmony- good point re. dosage- it seems that the whole
point of Low Dose Naltrexone is to be *low* dose- 4.5 mg is surely based on some generic average weight, so one would think that those of us significantly larger or smaller than a generic average 150 lb person would have to adjust accordingly, right? strangely, though, the literature always seems to refer to 4.5mg as a hard figure, which seems counter-intuitive. Perhaps for many of us, 4.5 mg is well past the therapeutic sweet spot? Traditionally, I always try the "more Is better" approach if something isnt as effective as I woukd like- but even with probiotics this sometimes backfires.

Post Edited (Probiotic) : 6/9/2011 6:28:49 AM (GMT-6)

Posted 6/9/2011 5:32 AM (GMT -7)
Probiotic,

Yes, temptation is part of the human condition, and perhaps more so for us, when we are concentrated on SCD diets or similar diets which exclude so many foods and so many traditional goodies. And for me, whenever I do these foolish things, temptations, then I ask myself "was it really worth it??", the answer always comes back as a NO.

Skip had told me that he's heard of many being able to expand their diets into normalcy after 6 months on LDN, as LDN seems to  take care of many food intolerances... so I'm going to have to remind myself of that whenever I get the urge to splurge with temptations I'm not allowed to have. Delayed gratification is so hard to do, but I'm going to try to practice that.


 

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/9/2011 3:57 PM (GMT -7)
badslinke,

How are you doing? Tell me about your progress.

What did you ever do about the L-Glutamine?

 

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!
Posted 6/10/2011 11:18 AM (GMT -7)
Hey InSoFla,

I've been MIA for a bit here. Looks like I'm still recovering from that freakin cornbread I had haha. Yesterday wasn't too bad actually, had under 10, with minimal form, but didn't have a lot of gut pain all day. I also had a lot of Mexican food yesterday (beef and chicken fajitas, no tortillas or anything, jut beans, rice meat and veggies) and I think I ate too many beans.

Diet is critical. Period. I've never been that strong on preventing myself from indulging, and I've paid for it more times than I care to count. As I've mentioned before, the only time I went into "remission" was when I was taking ultra massive doses of VSL under insurance, but I managed to break that a few times in a row by indulging like an idiot (my roommate had a lot of leftover french bread from Safeway, for example, and I took the whole d*mn thing and made garlic bread out of it and ate it all at once haha - the next day, FLARE).

I haven't made the leap into super massive doses of l-glutamine yet. I'm still just taking a few pills a day and doing more research on it.

Something interesting happened several days ago though: The first night I took Olive Leaf Extract, I had hardcore night sweats throughout the evening. I had to get up and stand in front of the fan just to dry off at one point. When the body heats up that much, it's because it's killing something off (body heat is a result of the immune system fighting off the flu, for example). I haven't had it since, but it sure makes me wonder what I was fighting off. Ideally, it would be the bug i believe I have that is largely responsible for my UC, but I haven't improved much yet, so there's no telling. What I have now may be a mild Herx reaction, but I really don't think that's the case. If I was going through a real Herx, I would be much worse off than I am now. Right now I'd call myself a 5-6/10, 1 being a hospital trip, 10 being remission.

How are you feeling now that it's been a few days??
DXed lower left UC July 2006, after a year of living abroad in Mexico and a month of extreme stress in June 2006. Food poisoning several months before while in Mx. Family history of gut/colon issues, though no one with UC. Now pancolitis.

Have tried:
Prednisone off/on, Asacol, 6MP, Canasa, Cortisone/Kefir/Lecithin Enemas, Serovera (aloe), VSL#3, SCD (1 year), Coconut oil, Boswellia, etc.
Posted 6/10/2011 3:23 PM (GMT -7)
badslinke,

Looks like I'm still recovering from that freakin cornbread I had

Yes, I guess it takes more than 2-3 days somehow to undue the damage we've done by indulging...

If I was going through a real Herx, I would be much worse off than I am now

Yes, you're right, but perhaps its a "healing crisis"? In homeopathy, you often get a healing crisis, in which you may experience in reverse order the symptoms you had.

Right now I'd call myself a 5-6/10, 1 being a hospital trip, 10 being remission

I hope you get to a near 10 soon. I would strongly urge you to try food combining. It does make a huge difference.  Your mexican meal of: beef and chicken fajitas, no tortillas or anything, jut beans, rice meat is a no-no in food combining because you have protein + carbs which wrecks havoc.

I have doubled up on my L-Glutamine - from 15 grams to 30 grams per day -in my mercola whey protein shakes. And have doubled up on the slippery elm bark powder with 2 packets of VSL#3 too. Still bleeding unfortunately. Before going on LDN I was bleeding at a 10 (on a scale of 0-10, 10 being the worst) every day. Since Monday I've been bleeding at a 5. Who would have thought that 6 stupid chocolate caramels could do so much harm? AND of course, lest I forget the huge stress I've had since Monday.....

Needless to say, this indulgence has cost me plenty, and I am not happy about it. Such a stupid thing for me to do...haha.

I'm toying with the idea of strictly avoiding food and ONLY doing my whey protein shakes for a few days until the bleeding goes down some. What do you think?

 

Diagnosed with UC in September 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several round without any help.Diet consists of only protein: protein shakes w/Maca powder,L-Glutamine 15 grams, D-Ribose 5grams, chia seeds, and meat & fish only.Liquid Minerals& Vitamins. Transdermal LDN is working!!!

Post Edited (InSoFla) : 6/11/2011 5:33:29 AM (GMT-6)

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