Ranting & Whining :grouphug:

[Lui]

Hello, everyone-
I do hope everyone is safe and taking precautions against Covid-19.

I could really use some advice. Diagnosed February 2020. Blessed to live in an area where I can find organic food and freshly butchered meat & poultry. For the past 2 months, I've only been eating bone broth, chicken, pork, white potatoes, sweet potatoes, white rice, banana, avocado, occasional potato chips made w/ avocado oil and the pretty tasty butter substitute I found on here.
I continue to take 9 mg/day of Budesonide. I've tapered my Prozac to 10 mg/day and will soon discontinue that. No more Prevacid (using Pepcid for heartburn).
BUT, I'm not getting better! I have good days, with minimal D, feel well enough to be up and working on projects, then will start in with several WD a day, and now am in a flare-getting up at night 2-3 times, about 6 times during the day, especially after I eat. Cramping(!), really fatigued, etc. Not quite as bad as at the beginning, but shi*!
I hate to put you all through this, but I really need to list everything I'm taking, because this doesn't seem to fit a pattern, nor can I associate it with a particular food

Jarrow Methyl B-12 5000 mg, 4/day
Jigsaw MagSRT (Magnesium 500 mg/Malic Acid 1436 mg, both as Dimagnesium Malate). Also contains B6 5 mg, Folate 200 mcg, B-12 5 mcg. 4/day.
Solaray Calcium Citrate 1000 mg. 4/day
Thorne D-5000 D3 125 mcg. 1-2/day
Basic Care (Pepcid) Famotidine 10 mg, Calcium Carbonate 800 mg, Magnesium Hydroxide 165 mg. 2-4 *This is new since diagnosis, as I had to taper the prevacid.

My husband and I are both nurses, but certainly not dieticians-I'm sure some of you learned folks here could teach a dietician a thing or two! He's lovingly cooking my foods, and very focused on doing whatever will help me. His current guess is possibly overdoing the pork. I've been eating a bit 2-3 times a day. We're both trying to get our head around the histamine concept.

My GI doc has suggested taking a course of the antibiotic Xifaxan (Rifaximin). His explanation: "Sometimes diarrhea is also related to a dysregulation of bacteria. This can happen after an illness as your bacteria repopulate and you are left with more diarrhea producing bacteria. Xifaxan seems to help 50-60% of people which is not bad. It is also not absorbed so it does not seem to cause side effects or interact with other medications." Now, I like the guy, but am pretty hesitant to add this med, especially considering the side effects.

Am I doing all the right things? What else should I be taking as a supplement, or changing? I feel like I'm
Thank you all for being here

Best,
Lui

[brandy]

Hi Lui,

Welcome to the board. I think you already know this but prevacid and prozac are heavily linked to causing and continuing microscopic colitis. Understand MC healing can take a long time. Even if you discontinued prevacid 6 weeks ago it could be awhile to see the healing results (we're talking months here.)

I would focus on continue the taper off of prozac. If anxiety is problematic during your taper suggest get out in sunshine as much as you can, work on outside exercise and also use epsom salt baths (magnesium) and transdermal magnesium.

So, the biggest thing that stands out is continue with your prozac taper under Doctor direction.

I tried Xifaxan (one pill). Within about 2 hours and I was in the car lucky me I had violent cramping and extreme D.

I'd take your supplements down to the minimum while you are having D. There are some transdermal vitamin patches that are sold online. I've never tried them but I think they are sold at PatchMD. If you look at my log in date you can see I joined the club about 10 years ago. I am in a solid remission now but the last time I had a flare up I had to eliminate oral supplements in order to get into remission. I take some oral supplements now. When we are having D the oral supplements are not really doing much of anything. We are not absorbing the supplements if that makes sense.

Your diet looks pretty safe. I do better with coconut oil than with the Earth Balance. Most folks on here can tolerate the diet you are eating.

To recap, keep working on the Prozac taper under doctor direction. Take a hard look at eliminating oral supplements and possible switch to transdermal.

Understand there is a huge time element to healing. I suspect getting off of the Prozac is key and some time to heal is key.

Suggest read the Success Story section if you have not already. There is good information in there too.
Do you have TEx's book? It is worth the money too.

Lui, there is a stress element to our disease too. Anything you can do to reduce stress (hard right now I know) is a plus.

Thank you and your husband for your service in health care.

[brandy]

https://perskyfarms.com/phpBB2/viewforum.php?f=71

This is the Success Story thread. Suggest read every success story. There are some pearls of wisdom to be found.

[brandy]

PS. Since you've had good days, with minimal D, I'd stick with the 9mg budesonide until you get solid stool. I suspect once you are off of the Prozac and some time has elapsed you will get consistently better days if that makes sense.

[tex]

Hello Lui,

Brandy offers good suggestions, so I can't add much. I concur with her suggestion about minimal supplements while trying to recover. I note that you appear to be taking relatively big doses. For example, are you taking 20,000 mg of methylcobalamin, daily? (Or is that 5,000 mg per serving size, and a serving is 4 capsules?) Is there a reason why you feel that you need to take that much? I have methylation issues due to MTHFR gene mutations, but I only take 1,000 mg daily (in Thorne Laboratories Methyl-Guard Plus), and I do fine with that. The serving size is 3 capsules (3,000 mg total methylcoblamin) for the Thorne product, but I only take 1 capsule per day. The excess B-12 probably won't cause you any problems, but the lab technicians may faint when they see the results, if your doctor happens to order a B-12 test for you. That's a lot of malic acid, also. I have no experience with it (other than eating apples after reaching remission), but I wonder if it sits well for someone in a flare. Most of us take magnesium glycinate — it's easily absorbed, with a low risk of causing diarrhea (compared with most other forms of magnesium). Having said that, I've never used the product you're taking, so I can't say that it might cause problems — I can only say that we (the membership here) have no experience with it.

That said, since you're a health care worker, you definitely don't want to be either vitamin D or magnesium deficient, since it appears to me that Covid-19 poses the greatest risk for people who have a chronic vitamin D and/or magnesium deficiency. Please make sure that your husband is also taking at least the RDA of magnesium and 5,000 IU (or more) of vitamin D during the Covid-19 crisis. Those two supplements will keep your (and his) immune system performing optimally.

I agree with Brandy that your diet should work, and you will begin to see results when the problematic medications are completely eliminated from your system. In our experience, no medication (not even budesonide) can overcome the negative effects of any drug that triggers MC.

Tex

[Kari]

Hello Lui,

You have gotten great advise from Brandy and Tex, but I thought I'd chime in based on my own experience. For almost 10 years after joining this forum I worked on managing my symptoms with diet alone. I was doing pretty well, but never well enough to stop having stress related to D, so I decided to have Enterolab testing done for the 11 antigenic foods. I was quite in shock when the test came back telling me that I was reacting to white potatoes and all grains. At that time, gluten free, rice or corn based bread, and white potato were a big part of my daily diet. When I stopped eating them, there was a noticeable improvement in how I felt.

If you haven't done the Enterolab testing, I (and most people here) highly recommend it. It will give you definitive answers about your food triggers, and will help alleviate the stress of trying to figure out what you can and cannot eat.

Unfortunately, it is usually a long process to recover and get symptoms under control, but perseverance and discipline will surely get you there. I wish you all the best on your journey back to radiant health!!!

Love,
Kari

[Lui]

I had to reply to Tex first, as something he said really jumped out at me:

Hello Lui,
Are you taking 20,000 mg of methylcobalamin, daily? (Or is that 5,000 mg per serving size, and a serving is 4 capsules?) Is there a reason why you feel that you need to take that much? Tex

Tex-I actually had to create a spread sheet(!) to determine how much of each I was taking. It was an OMG moment. You're absolutely right, I'm taking way too much B-12! I don't think my mind is working well these days!
Here are the TOTAL servings per day:

Magnesium 1936 mg (I've been taking this brand for 2 years, hopefully not contributing to D)

Calcium 1000 mg

B-12 10,006 mcg

D-3 10,000 IU (250 mcg)

I have methylation issues due to MTHFR gene mutations

I did do an analysis using 23 & Me data and ran it through Genetic Genie. I don't completely understand it all, but the only MTHFR issue was MTHFR C677T rs1801133 AG +/-

That said, since you're a health care worker, you definitely don't want to be either vitamin D or magnesium deficient, since it appears to me that Covid-19 poses the greatest risk for people who have a chronic vitamin D and/or magnesium deficiency. Please make sure that your husband is also taking at least the RDA of magnesium and 5,000 IU (or more) of vitamin D during the Covid-19 crisis. Those two supplements will keep your (and his) immune system performing optimally.

That's very kind of you to think of him, also! Fortunately, my husband and I are not working right now. It would have been very tough to be out there...we both worked in hospice. He's semi-retired, a woodworker now, so of course was laid off. We had many, many talks about whether to go back to work. Much guilt! Both made the decision not to...too much to risk here at home, esp. with 80 y.o. mom w/ respiratory issues.

[Lui]

Hi, Brandy-Thank you so much for all the advice and the reminder that I need to be patient and it takes time to heal.

Hi Lui,
I think you already know this but prevacid and prozac are heavily linked to causing and continuing microscopic colitis. Understand MC healing can take a long time. Even if you discontinued prevacid 6 weeks ago it could be awhile to see the healing results (we're talking months here.)

Yep, first thing I learned during my research is what meds, food and supplements to discontinue. Funny, my GI said nothing about meds. I told him all the things I was doing, and he "approved". In Kaiser system, so made appt. w/ psychiatrist for her guidance...she increased my Wellbutrin. I certainly didn't want to add in anything at that point.

I would focus on continue the taper off of prozac. If anxiety is problematic during your taper suggest get out in sunshine as much as you can, work on outside exercise and also use epsom salt baths (magnesium) and transdermal magnesium.

All excellent ideas! You reminded me that I'd bought some magnesium oil. Will start using it.

I tried Xifaxan (one pill). Within about 2 hours and I was in the car lucky me I had violent cramping and extreme D.

Jeez, just what we need from a "treatment".
I will check out the transdermal patches. I'm sure you're right-not doing me much good by going right through me.

Thank you and your husband for your service in health care.

We're all doing the best thing that we can right now-shelter in place, act like you're "infected" (which keeps awareness of my actions at the forefront), reduce stress...
I'll read through the Success stories, and read them as many times as I need to feel motivated and comforted.
Y'all are pretty wonderful!

[Lui]

If you haven't done the Enterolab testing, I (and most people here) highly recommend it. It will give you definitive answers about your food triggers, and will help alleviate the stress of trying to figure out what you can and cannot eat.

Hi, Kari-
I really, really want to do the testing. I've read everything I can find about it. I can't really afford it right now. I do know that it will save time (and probably money, by not buying food I can't eat!), so am hoping to do it as soon as I can.

I love the idea of "radiant health"!
Lui

[tex]

A bit of background information on magnesium:

Magnesium powder is highly explosive (it's used in fireworks and an exothermic welding process known as thermite welding). Therefore, the only safe way to use it is in the form of a compound with another metal, or as an oxide. Unfortunately, humans can only absorb about 3 or 4 % of magnesium oxide, so it's no good as a supplement. But it makes a good laxative, and it's cheap, which is why hospitals use it.

I'm unfamiliar with the magnesium product that you're using, but with most stable compounds, elemental magnesium makes up roughly half the compounded material (or less). If the number you listed (1938 mg) is elemental magnesium, that's enough magnesium to clean out a horse. The RDA for women is 320 mg. If it's the amount of the compound, then you're only getting a fraction of that amount, but it still appears to be a heck of a lot of magnesium. About 500 mg of magnesium citrate, for example, would give me diarrhea.

Virtually no one needs to supplement calcium. With an adequate vitamin D level, we absorb more calcium than we need from our food, even when we're eating a limited diet. As long as we're not magnesium deficient, magnesium will enable/activate insulin to transport the calcium out of our blood, into the cells where it's needed. Doctors who prescribe calcium supplements don't understand how calcium gets into our bones and other cells where it's needed. They simplistically believe that anyone can just take calcium and have strong bones, but that's not the way it works. Without adequate vitamin D and magnesium, you can take all the calcium you want, and it won't provide any benefits for your body (but such large doses have been shown to increase the risk of adverse cardiovascular events).

Tex

[brandy]

Hi Lui,

As reference I'm taking 200 - 400 mg magnesium glycinate and I am a 140 pound woman. If my stools get looser I step down to 200 mg.

[dottydog1959]

Hi Lui
I've just read your list of foods and it struck me that there's little in it that I could eat. I've had CC for decades and only properly restricted my diet about a year ago after 2 courses of budesonide failed. I'm now doing well on 3mg a day, improving all the time but still a limited diet.
Of your listed foods, I can't eat chicken or pork. I stuck to turkey and fish, only recently adding lamb. Sweet potatoes are a no no. White rice has to be Arborio risotto. Avocados are out - I've tried. Bone broth also, until I found a powdered version to stir in to drinks. No veg or fruit except unripe bananas. And everything must be cooked fresh, leftovers go straight in the freezer, anything in the fridge for over 12 hours is no good, I assume due to histamine issues. I can eat whole nuts and drink decaffeinated coffee now, good news!

Hope this helps. It seems to me that getting it 95% right isn't good enough - just one "wrong" food item can scupper you. I've found them hard to identify, and I'm not yet 100% successful otherwise I'd be off budesonide.
Working on it.

[Lui]

Hi Lui

It seems to me that getting it 95% right isn't good enough - just one "wrong" food item can scupper you. I've found them hard to identify, and I'm not yet 100% successful otherwise I'd be off budesonide.
Working on it.

Hi, dottydog 1959-
Thank you for sharing what's working/not working for you. I think you've pinpointed the hardest part for me (and possibly all of us)-We need to examine EVERYTHING we put into our bodies!
Lui

[Lui]

Hi, all-
An update. This past week I went about 48 hours with NO D! (Well, no BM whatsoever, but I wasn't too worried). I felt more energetic, less crampy...

Here's what I've done differently: discontinued the magnesium and calcium, ended the Prozac taper, and tried white fish (sole), sweet potato & regular potato chips (screened for bad guys, of course ). Started using magnesium oil topically, but not routinely, because I forget to use it.

D returned, but not as violently or frequent as before.
I'm hesitant to get excited, as this has happened before, so we'll see!

Still eating same: sweet & white potato, jasmine rice, avo, Earth balance spread, banana, pork, and the few things I've added above. Cooking most everything in the bone broth we've made. Love the ice cube idea! Just pop 1-2 "broth cubes" into whatever we're cooking.

Tex-thank you for the complex answer about magnesium. Wow! You are such a font of knowledge! I'm still trying to digest (pun intended) all the science you've written behind mag and calcium. Sometimes, these days, with all that is going on in the world (and regular life doesn't stop just because of a pandemic), I feel like my head may explode!

Brandi-that amount of magnesium sounds very reasonable. Thank you. We'll see how it goes as I add a bit back into my diet.

NOW-I want to eat something else! Yes, I've looked at the food lists and suggestions, and I certainly wouldn't say I'm ready for Stage II...but NO green on my plate is getting pretty old. I'm used to large salads for dinner most nights. I think I'm going to try to completely overcook some broccoli and see how that goes tonight.
What else?

Lui

[brandy]

things in the squash family are generally safe, acorn, butternut, canned pumpkin, green beans, with everything overcooked
also beets, rutabags, turnips, again everything overcooked

Just try one thing at a time.

Lui, I'd also suggest you do a food log. If you get D look at what you ate the day before.