Update, and starting LDN soon

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Zizzle
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Post by Zizzle »

INTERESTING!! From The MC Update article Jon posted:
In addition to the inflammatory component in the pathophysiology of microscopic colitis, there may be an additional neuronal component to pathophysiology. A recent study identified increased chromogranin A, chromogranin B, and secretoneurin levels in feces of patients with collagenous colitis compared to relevant control groups. These observations may point to a neurogenic involvement in microscopic colitis and additionally these stool markers are suggested to be helpful in discriminating microscopic colitis from irritable bowel syndrome or classical inflammatory bowel disease [71].
http://www.hindawi.com/isrn/gastroenter ... 13/352718/

Peptides. 2000 Aug;21(8):1289-98.
Secretoneurin: a functional neuropeptide in health and disease.
Wiedermann CJ.

Abstract
Chromogranins belong to an evolutionarily conserved family of proteins that serve as neuropeptide pro-proteins, besides having other functions. The secretogranin-II-derived peptide secretoneurin is a 33-amino-acid polypeptide generated by proteolytic cleavage at paired dibasic sequences that exerts its effect by binding to specific receptors. Secretoneurin receptors have been kinetically and functionally characterized indicating that they are G-protein linked. Localization of secretoneurin and functional studies have helped to elucidate roles for secretoneurin, ranging from effects in the central nervous system to the modulation of the inflammatory response in the periphery. It has been shown that secretoneurin possesses biologic activities such as stimulation of dopamine release from striatal neurons and activation of monocyte migration, suggesting that the peptide may modulate both neurotransmission and inflammatory response. With an array of actions as diverse as that seen with other sensory neuropeptides, there is scope for numerous studies and therapeutic possibilities.
I think my doctor is really on to something with his theory that all inflammation initiates in the CNS...
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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wmonique2
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update and starting LDN soon

Post by wmonique2 »

Z., how come you haven't started yet since you already saw your doc?

On that youtube link that you posted, it said that it treats type 1 diabetes. I never read that on any other research I did originally. There is a mile long list of conditions it can help and the doc said that it helps about 80% of his patients. He admits that there are non-responders.

If it could help my diabetes (how I can't figure out since I make NO insulin whatsoever) and my MC, I'd jump on it. I am just scared of not sleeping at night. I guess one needs to start slow.

I think if I mention it to my GI doc, he probably would look at me with that cow-under-the-rain look that he sports when I mention anything he is clueless about. Bless his heart ;-)

When are you starting it?

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Zizzle
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Post by Zizzle »

I saw the doc right before our big snow storm (12 inches over 2 nights), so I haven't gotten to the compounding pharmacy yet. Maybe today, but it may take them a couple days to prepare it. Can't wait!!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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wmonique2
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Post by wmonique2 »

Z.,

yeah, I'll be chomping at the bit too! Let me know if you can sleep (my biggest fear!) My compounding pharmacist gave me the name of a doc who prescribes it. I didn't know where I could find a doc so I just called the compounding pharmacy and asked him who prescribes it. A shortcut.

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
barbiem
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Post by barbiem »

I have been on LDN since mid November but going very very slowly - only now up to 1.2 mg nightly - already my thyroid is not requiring as much medication - my hair has stopped falling out!!!

barb
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Gabes-Apg
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Post by Gabes-Apg »

Zizzle wrote:
I'm starting to believe there are 2 types of people...those on the SAD diet who can get miraculous success by switching to a GF/anti-inflammatory diet, and then those of us with more sinister food/environmental sensitivities (and perhaps pathogens) that impede progress even on the right type of diet.
.

Totally agree.
This seems to applies to multiple conditions.... Either people get good management of symptoms and attain wellness, or they have ongoing mixture of issues that they never really get total control.

I hope this is the answer to your ongoing issues, and you get improvement!!, it has been a long journey for you.
Gabes Ryan

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Pat
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Post by Pat »

Barb,
What level did you start? Has it helped MC?

Zizzle,
Good Luck and please keep up posted!

Pat
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Zizzle
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Post by Zizzle »

I'm on Day 2 of LDN. Thankfully I'm having little to no side effects. I had no dreams that I remember the past 2 nights (I think I never dream), and no middle of the night wakings. I did notice I woke up more alert that usual and felt jittery in the mornings. By evening I was a little cranky, but being pissed at my lazy husband didn't help matters. My rash is not flaring, and in fact is starting to turn purple on my most active new patch on my hip. Purple usually means it's dying down. Imagine progress that quickly? If I continue with no side effects this week, I'll double the dose to 4.5 next week. I'm so hopeful!!

BTW, there is a Facebook group called "IBD and LDN Chat Group" if anyone is interested.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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wmonique2
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update and starting LDN soon

Post by wmonique2 »

Z.

:thumbsup:

:cheerleader:

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Post by Sheila »

Great news, Zizzle. Hope it gets better and better.
To get something you never had, you have to do something you never did.

A person who never made a mistake never tried something new. Einstein
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wmonique2
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update and starting LDN soon

Post by wmonique2 »

Z.

Are you taking it in liquid form? I understand that you can have it that way since you have to go up almost weekly....(dispensed with a large dropper for measuring the ml.)

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Zizzle
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Post by Zizzle »

No, my doctor scoffed at the concept of .5 mg increments. He said he routinely starts people at the 4.5 dose and people rarely report any issues. I asked for 2.25 mg capsules so I could double the dose when I'm ready. So far, no issues at all, other than not being able to sleep in past 7:30. I may finally become a morning person!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Zizzle
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Post by Zizzle »

Here is an excellent overview of LDN (including studies and mechanism of action) that you can print and share with your doctors.

I note that maximum effect is observed at 28 days.


http://communitypharmacymd.com/low-dose ... -patients/
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Post by barbiem »

I started very slowly due to my sensitivities - .5 mg for almost a month then 1 mg for another month and now I am almost at 1.5 mg - I do have vivid dreams and do wake up early - which like the other poster isn't a bad thing as I am also now finally after 49 years a morning person!! my hubby loves it LOLOL!!

babs
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Zizzle
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Post by Zizzle »

I'm not very patient. I want results...yesterday. I feel really great. Even ate restaurant salads, ate bits of peppers in a sausage (nightshades not allowed in my current diet), reintroduced almond butter, dropped my prednisone dose by 1 mg, forgot a few evening doses of Plaquenil, and had a perfect, lumpy Norman tonight and zero digestive trouble. The rash is slowly calming too.

I'm getting excited!!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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