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Zizzle wrote:I'm still twitcher than usual and my tremor is no better. My in- laws think I'm getting Parkinson's.
Has your vitamin B-12 level been checked lately? I had tremors a few years ago (that I attribute to years of gluten damage), but they haven't reappeared since then. The Metanx may have helped to resolve my tremors.
Tex
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.
I am SO GLAD that it stopped your sea sickness because my biggest issue with MC is nausea, the debilitating kind that you can't function and that's why I take elavil (amitriptyline).
I am going to wait like 4 weeks before I start titrating from mesalamine. The reduction in inflammation during the clinical trials happened after 4 weeks.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I haven't had B-12 levels checked in a few years, but they were on the low end of normal then. It occurs to me I didn't take a single supplement during my trip, so I may have been deficient in calcium/magnesium and B-Vitamins. I need to get better at taking pills!!
Monique, I almost never get nausea unless I'm in a car, bus or train not looking out the window or on a floating vessel of any kind. I literally would rather feed myself to sharks than endure most boat trips.
I'm seeing an uptick in rash healing after 2 weeks at 4.5 mgs.
I am not good at taking supplements when I travel either...
Like you I only got nausea when I travelled by boat. However, since dx'd with MC, it's been my constant companion. I believe it's the mast cell issue and elavil quiets down the gut with all the serotonin in there.
I am hoping that since LDN works on endorphins that I would eventually get rid of the nausea.
Another thing I noticed. It's lowering my blood sugars at night. I have to adjust my night time insulin.
Wonderful that you're seeing an improvement on your rash. I've been now 9 days with LDN and I feel great. Cheers!
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hi Monique,
How are the MC symptoms doing? I'm seeing my prescribing doc today for my first follow up. My only concern is the apparent aggravation of my "benign" tremor and some mild small muscle twitches throughout the day. I hadn't taken my cal/mag supplements in a couple weeks, and very little B complex, so maybe adhering to those regimens will do the trick. I applied magnesium oil before bed last night too. But I will ask whether dropping down to maybe 3.5 mgs might help.
I forgot to take my LDN Saturday night and boy did I sleep in!! Felt fine and less twitchy Sunday, took my 4.5 mgs last night, and feel equally fine today (waking up earlier of course).
I've reintroduced several nuts (cashews, pecans and almonds), small servings of pork (bacon, sausage, and chicken sausage in pork casings), and small amounts of nightshades with no trouble at all. I even had accidental milk ingestion (a "coconut creme" filled chocolate that was made with milk powder and heavy cream) and had no reaction at all. The next big reintroduction will be whole eggs, although I've been getting small amounts of baked egg in Udi's bread.
I'm down to 7 mgs prednisone now, my 3rd drop in one month, with no symptoms after each drop. Amazing.
Did you post on the other boards to see if others are experiencing tremors? I don't remember reading about tremors from anybody. I remember though reading about some MS folks saying that it increased their "spasticity". I hope you can solve this with your doc when you see him today.
I am exactly 2 weeks into it and I too am seeing changes. After the first week I started having a bit of C which I never have so I figured that the mesalamine (which is what stops my D) must be reduced. So I reduced it by 1/3 for a week now and I can't believe that I was able to do that. I was never able to reduce it for more than one day. So, that's very promising. I don't want to cut back too fast, I have to be patient and do it incrementally.
The other unexpected thing on the second week is that it's kicking my insulin in the butt. I have needed less insulin during nighttime and daytime. It means that my metabolism is faster. Also as a result of taking less insulin, I have less appetite. I wouldn't mind losing the 5 lbs I put on when I went on Elavil. (YAY!)
I continue to feel good. Have energy. A sense of well-being I didn't have before. Last night I didn't sleep too well. I am taking it at 10pm, an hour before I go to sleep. I think that I need to push that back to just before going to sleep because it wakes me up when I take it at 10. It's like drinking a cup of coffee before bedtime.
It's great news that you are able to drop your pred. Awesome! And you have added foods. Great news. I am not concerned about adding foods at this time. Later. I want to see healing first then I'll worry about the food. I am able to eat eggs because they don't show as reactive in any of the tests I took.
I'll go and see my doc after week 3.
So happy for you!
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
I never tested + for eggs on Enterolab or MRT either, but I cut them out because they are forbidden on AIP, and I was noticing bouts of D after large breakfasts of eggs and bacon (hence cutting out pork too). I've also read that something in the egg whites is particularly bad for leaky gut, etc. I might reintroduce yolks first, but something tells me I'll be OK with this reintroduction too.
Monique,
Great news!! I was asking the nurse in my doctor's office about less expensive mail order pharmacies to get my LDN, since my insurance isn't covering it. Well she called another local compounding pharmacy and my insurance (Blue Cross), and somehow they are covering it with a $5 copay!! YAY!!!
good news! I am calling my drug plan to see if it'll cover it. I paid cash for the first batch at Skip's. I am calling your pharmacy tomorrow to see if they accept my plan. Thanks!
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Hmmmmmmm. It appears that I was right, after all — 4.5 mg is correct for individuals who weigh about 150 lbs, and all others should calculate their dosage based on their weight. It sort of appears that all those trials and studies that are listed as references, that use 4.5 mg as the selected dosage, were managed by individuals who are simply mathematically-challenged and/or too lazy to calculate correct dosages based on weight. But that's typical of mainstream medicine and the pharmaceutical industry — most prefer to think that one-size-fits-all, when it comes to treatments, so it's not surprising that alternative medicine would succumb to the same bad habit.
Tex
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.
I wanted to update everybody on my situation now that I have been on LDN for one month.
If I were to summarize it in one sentence, I'd say that I wish I had done it 3 years ago.
It's been amazing. Immediately I noticed that I had energy, a sense of well-being and no body aches. Within one week I reduced my mesalamine, which is the drug that keeps the D at bay. Within 3 weeks I completely eliminated mesalamine. I have NEVER been able to reduce it at all. I was symptomatic within a couple of days. Bear in mind that mesalamine is dangerous. It raised my liver enzymes. LDN can do that as well but you have to take 300mg! I take 4.5mg. So I feel safe.
I was taking elavil. I am eliminating that too tonight because LDN works on mast cells and I won't need it anymore. Here's a link that you should read. There is a great diagram Zizzle found that explains exactly how and where LDN works.
The difference between all the other drugs and LDN is that the other drugs left me like a zombie. I was unproductive and feeling sickly all the time. LDN reduces inflammation and you feel wonderful. Also, it reinforces your immune system which we could all use.
Love to all,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Cheers!
But that's typical of mainstream medicine and the pharmaceutical industry — most prefer to think that one-size-fits-all, when it comes to treatments, so it's not surprising that alternative medicine would succumb to the same bad habit.
