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An update on my LDN therapy: A Miracle? An unequivocal YES!
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Zizzle
King Penguin
King Penguin


Joined: 22 Jul 2010

Posts: 3484
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Wed Oct 28, 2015 10:47 am    Post subject: Reply with quote

Trazodone is an SSRI antidepressant. It can cause drowsiness for 50% of people who use it, but I see no indication anywhere of people using it as a sleeping pill. SSRIs are a known trigger of MC, so you may wish to lay off that one. It also has some impact on methadone use, so I imagine it would interact with the LDN in some way.

Quote:
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Mechanism of action as an antidepressant is presumed to be linked to potentiation of serotonergic activity in the CNS resulting from inhibition of reuptake of serotonin (5-HT) at the presynaptic neuronal membrane.
Does not influence reuptake of dopamine or norepinephrine; does not inhibit MAO; does not stimulate the CNS; exhibits little anticholinergic activity.
Produces varying degrees of sedation resulting from its central α1-adrenergic and/or histamine blocking activity.[code]


http://www.drugs.com/monograph/trazodone-hydrochloride.html

I know of people who take Ambien plus LDN without issue.

Keep in mind that the first 4 days of LDN feel terrible. You can have headaches, grogginess, brain fog, etc. It clears, but as your immune system starts to modulate, your symptoms can get worse before getting better. I had an increase in tremors, lower blood pressure, cramping, etc when I started. But after a few weeks I felt GREAT.
_________________
1987 Mononucleosis (EBV)
2004 UCTD post-partum
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2012 Dermatomyositis
2013 Modified Paleo Diet
2014 Low Dose Naltrexone
2015 Megaspore and Culturelle probiotics
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Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Wed Oct 28, 2015 10:56 am    Post subject: Reply with quote

Oh! I thought Traz was a "SARI" (serotonin antagonist and reuptake inhibitor), though they may both work the same way. It's used off label for insomnia (as its sedative properties are better than its antidepressant ones, lol). I was prescribed it when Ambien stopped working and it was like a miracle for me in terms of sleep. The last time I used Ambien, it wouldn't keep me out longer than a couple of hours. I will try again... Thanks for the encouragement re: LDN start up side effects! It sounds similar to how AD's work- symptoms always get worse before they get better. Plan at this point is to double to 2 mg. in a week's time, depending on how things go. Did you get SE's with each increase?

Thanks!

-L
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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Zizzle
King Penguin
King Penguin


Joined: 22 Jul 2010

Posts: 3484
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : gluten, dairy, soy, sesame seeds, buckwheat, amaranth, walnuts, peppers, CORN!

PostPosted: Wed Oct 28, 2015 11:06 am    Post subject: Reply with quote

Yes, I got the same side effects with each increase, but I only increased once. Started at 2.25, then doubled after 10 days.
_________________
1987 Mononucleosis (EBV)
2004 UCTD post-partum
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2012 Dermatomyositis
2013 Modified Paleo Diet
2014 Low Dose Naltrexone
2015 Megaspore and Culturelle probiotics
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Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Wed Oct 28, 2015 12:55 pm    Post subject: Reply with quote

Cool. I wonder if perhaps I should have done the same thing... but I tend to be pretty sensitive to meds, so I figured I'd start low. @Monique-- you started lower than 2.25, yes? Are you on 2.25 now, or did you eventually double to 4.5?
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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wmonique2
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1021
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : GF, SF, DF,Walnuts, cherries, caffeine and another 30+ foods
Location: Georgia, U.S

PostPosted: Wed Oct 28, 2015 3:25 pm    Post subject: an update on my LDN... Reply with quote

Lucy,

The worst symptom of LDN is sleeplessness at the beginning of the therapy. Most get over it after the first or second week. I gave it 2 weeks but I never fell asleep. I take it in the morning at about 10am. There is a window between 10-11am that works well on levels of serotonin according to Dr. Skip Lenz. I've been taking it in the morning for more than a year and half and it works beautifully. It keeps me alert during daytime which is when I need it. I took melatonin with it when I was trying night dosing but it didn't do anything. I could have danced all night.

Yes, I used the cream since the beginning because I was afraid of gut issues. I never had any.

You have to find your sweet spot with LDN and it takes a little adjusting but be patient and you'll get there. It works on your immune system and that will take longer than just popping another kind of pill. I am totally asymptomatic now. Just LDN. Nothing else.

Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Wed Oct 28, 2015 4:01 pm    Post subject: Reply with quote

That's fantastic, Monique! Good to know that morning is an option. I'm a chronic poor sleeper as it is. ;) Just out of curiosity, do you have any other autoimmune issues? Also, how bad were your food sensitivities before starting LDN? My Enterolab results were sky high and I'm really hoping LDN will help lower the antibody levels. Oh, and much LDN do you use? I feel like I saw 2.25 mg somewhere... Thx!!
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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wmonique2
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1021
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : GF, SF, DF,Walnuts, cherries, caffeine and another 30+ foods
Location: Georgia, U.S

PostPosted: Wed Oct 28, 2015 6:50 pm    Post subject: an update on my LDN... Reply with quote

Lucy,


The first year I ate like 5 foods. Dropped 20lbs. I was sensitive to everything. I did enterolab and the other test (forgot the name). I couldn't eat any food with any histamine (and all foods have histamine). I was GF, SF, DF, EF, low fiber and low histamine. Some nuts. All legumes. I was miserable and had no life for nearly 3 years. I couldn't tolerate most meds. Had brain fog from them. Until I went on LDN. And yes I have Type 1 diabetes (juvenile) which is an auto-immune one.

I take 2.5mg LDN. Don't give up too early. Switch to day.

Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Wed Oct 28, 2015 7:45 pm    Post subject: Reply with quote

Thank you!! This gives me so much hope. Very Happy I've been feeling really stressed and low about what feels like a stark lack of options in my diet- sounds like you were in a very similar boat (but even worse). I'm incredibly glad you're well now! I definitely plan to stick with LDN for awhile, unless something crazy happens. So do you think I should go ahead and switch to daytime right away, or give it a few more tries at night? I was just planning on taking a sleep med for the next few nights until my body adjusts. Guess it will probably require some experimentation...

Thanks again!
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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mjbonsais
Adélie Penguin
Adélie Penguin


Joined: 28 May 2005

Posts: 118
User's local time:
2017 Dec 14 - 11:18 AM


Food Intolerances : gluten, milk, egg, yeast

PostPosted: Thu Nov 05, 2015 4:52 am    Post subject: Reply with quote

This is awesome for you. I feel so uneducated at times with the many advances in medicinal helps. The lab you mentioned is not too far from where I live here in Florida. I believe you mentioned Boca Raton. I would like to know who else has taken this very same "jump" with LDN with success. All of you have taken on the challenges dealing with MC and it's many forms with such fervor. I am dealing with osteo-penia and am aiming for feeling good again. Keep up the great efforts! I truly appreciate one and all here on this board. Have a great Thursday!
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I Am Someone Special
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Sheila
Rockhopper Penguin
Rockhopper Penguin


Joined: 18 May 2011

Posts: 1129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : gluten, eggs, cow's milk, soy, guar gum, whey, goat's milk, cocoa, crab, carrot, amaranth, kamut,
Location: Palm Beach Gardens, Fl

PostPosted: Thu Nov 05, 2015 7:36 am    Post subject: Reply with quote

I started LDN 2 1/2 months ago because of other autoimmune diseases, OA and post surgical pain. I started at 1.5, went to 3 and will next try 4.5. I've seen definite improvement in Sjogrens symptoms but it's hard to tell if it is helping pain because of a piriformis injury that just won't heal.

Go to the LDN homepage to find more information. If you live near Boca Raton, Skippys Pharmacy is a well known and reliable source of compounded LDN. I'm having difficulty getting my PCP to prescribe and have been buying it from www.buyldn.com in Israel. I live in Palm Beach Gardens and may make the trip to Skippys one of these days.

Sheila W
_________________
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
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1021
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : GF, SF, DF,Walnuts, cherries, caffeine and another 30+ foods
Location: Georgia, U.S

PostPosted: Thu Nov 05, 2015 9:44 am    Post subject: an update on my LDN... Reply with quote

It's Skip's Pharmacy --- 800-553-7429. They'll compound it to whatever you need. Have it compounded at 4.5mg and take as little or as much as you need, starting slow like .5mg.

I listed 2 FB pages above where you can find others like us who have tried it and still on it.



Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Sheila
Rockhopper Penguin
Rockhopper Penguin


Joined: 18 May 2011

Posts: 1129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : gluten, eggs, cow's milk, soy, guar gum, whey, goat's milk, cocoa, crab, carrot, amaranth, kamut,
Location: Palm Beach Gardens, Fl

PostPosted: Thu Nov 05, 2015 10:49 am    Post subject: Reply with quote

Thanks Monique. Skippy is a dog and my brain is taking a vacation. 😜
_________________
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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Lucy_B
Adélie Penguin
Adélie Penguin


Joined: 04 Sep 2015

Posts: 129
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : Gluten, casein, soy/legumes, eggs, nightshades (potatoes, tomatoes, etc.), nuts/seeds, grains, pork, tuna, beef, chicken, salicylates...pretty much everything under the sun. :)

PostPosted: Fri Nov 06, 2015 11:53 am    Post subject: Reply with quote

Quick question for you LDN veterans- did anyone ever experience heart palpitations with dose increases? I've recently gone from 1 mg. to 2 and woke up around 4:00 a.m. this morning with a racing heart (and lots of energy :) I'm assuming this is part of the endorphin rush but just wanted to make sure...
_________________
2005- Crohn's dx (later changed to "IBS")
2010 to present- Recurrent miscarriages (9)
2012 to present- Elevated thyroid antibodies and TNF-a
2012- tested compound heterozygous for MTHFR mutation
2015- LC dx
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wmonique2
Rockhopper Penguin
Rockhopper Penguin


Joined: 03 Aug 2012

Posts: 1021
User's local time:
2017 Dec 14 - 10:18 AM


Food Intolerances : GF, SF, DF,Walnuts, cherries, caffeine and another 30+ foods
Location: Georgia, U.S

PostPosted: Fri Nov 06, 2015 12:12 pm    Post subject: an update on my LDN... Reply with quote

No, never had that. I would have gone .5mg up, not 1mg. It's too fast and may have been too much for you.

Heart palpitations can come from adrenaline rush which could have happened with a low blood sugar and a rebound of adrenaline. With LDN slow increase is better than a quick one. And more is not always better.

Go back and take less. Wait a week then go up.

Monique
_________________
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30837
User's local time:
2017 Dec 14 - 9:18 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Nov 06, 2015 1:21 pm    Post subject: Reply with quote

Lucy,

Those symptoms (especially during the early hours of the morning) can also be caused by magnesium deficiency, because if our body is going to run out of magnesium, it's going to happen when a lot of time has elapsed since our last meal. During the day, we usually get enough magnesium from our meals to supply our essential electrolyte needs. But if we have no magnesium reserves to draw from, then the magnesium level in our blood can become dangerously low before breakfast.

The symptoms I experienced under those conditions were somewhat like the symptoms of a panic attack (there is no sense of panic, just the cardiac, respiratory, adrenaline-like symptoms caused by an electrolyte deficiency).

Hyperthyroidism will also cause those symptoms (or an overdose of thyroid supplement can cause those symptoms).

That said, it's also certainly possible that the LDN's effects might be amplified or otherwise modified by a magnesium deficiency or some other issue. Those are uncharted waters.

And of course it's possible that the LDN could have caused those symptoms and nothing else had anything to do with it. shrug If that's the case, you should proceed with caution, because heart palpitations can sometimes lead to sudden unpleasant consequences.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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