New to MC not new to AI - is this the new normal?

[Over Achiever]

Hi Everyone -

This forum is a godsend - as I'm sure you all already know.

I have a number of autoimmune diseases and implemented the autoimmune protocol of the paleo diet to manage them a few years ago. My name here is Over Achiever because after I was diagnosed with Collagenous Microscopic Colitis my friend laughed and said I was an autoimmune disease over achiever...

In February my husband had a terrible case of giardia from traveling overseas. We didn't know that's what it was until after I got it. When I came down with it I was remote for 3 weeks and could not get medical treatment until the week after I got back (4 weeks from onset). I was put on Flagyl and I also took Oil of Oregano. (I'm pretty sure the giardia has been erradicated.) I ended up in the ER a couple times because I couldn't stay hydrated and had lost 22 pounds. I had a colonoscopy which diagnosed the MC. They put me on Budesonide (i'm in my second month). I also take prescription probiotics.

I went from eating clean, organic autoimmune paleo to eating only a little organic rice and a little organic chicken or beef twice a day. Then down to once a day. Then I cut out the rice, then the meat. Nothing has gotten better except the cramping. D is 100% liquid. I'm down 32 pounds.

I have 2 functional medicine docs. One is an MD and can write scripts but very hard to see (I did see her though). The other is not an MD and I can see him as needed. I was put on a liquid diet (at my request as I simply got sick of eating and getting sick). I have RepairVite and collagen that I mix with coconut water. I try and drink some organic aloe juice too. Once in awhile, if I'm just starving and don't care if my stomach gets sicker I will have a little meat (it's not tolerated well but tolerated better than anything else except raw coconut chunks).

The (not functional medicine) doctors basically told me, this is a lifetime sentence. It sucks. It's never going away.

The FM docs feel it can be managed, like you all are doing. I'm guessing I need to be patient and wait for the steroids to help? Seems like they should have helped some by now, especially given I NEVER stray from my exceedingly limited diet... Some days I just don't want to wake up. As you know, every little thing in our days has to be planned around where the bathrooms are. Even WATER makes my stomach go nuts.

My FM docs have me getting an endoscopy and another colonoscopy in a couple weeks.

Do any of you have any advice on anything I might try or any additional tests that might help? I've read the forums extensively and appreciate you all for sharing and supporting! Thank thank you thank you.

Lisa

[brandy]

Lisa,

Welcome, I chuckled at your "over achiever" name. Most of us are "type A."

If you have not yet read Tex's book, link is in the upper right hand corner, I would highly recommend it.

Brandy

[Erica P-G]

Hi Lisa,

As you may guess I'm going to ask if you know your D levels, if you are supplementing with enough of it, and if you are getting adequate Magnesium in the form of glycinate external since you are having such a hard time getting the gut to calm down.

Something is triggering your insides something awful....I can remember when just water did it to me too

I hope the budesonide kicks in pretty soon for you too, are you taking the max 9mg?

Cheers
Erica

[Over Achiever]

Thank you Brandy and Erica. I ordered the book, Brandy, and am looking forward to reading it. Erica, my docs have boosted both my D3 and Magnesium levels. I'm now at 10,000IU for D3 and 360mg Magnesium glycinate.


I've felt like I've been fighting hard for my life for the last 20 years. This is a whole new level of fight these past few months. It's hard to even want to fight in some moments. So many of you have been fighting it for years and decades. Reminding myself that you all have been and are doing it gives me hope and strength...

Lisa

[Erica P-G]

Hi Lisa,

My opinion, but I'd up the Mag glycinate to 600-800mg a day for at least 6-8 weeks such as in if you were trying to heal a broken bone, and you may want to continue with 600 until you lower the amount of VitD3....with high VitD intake you want adequate Mag to help it absorb properly not let it excrete out the urine, which is what it will do and tax the kidneys.

I took 10,000 vitD for a good strong 7 months, I started out at 45 and now I am hoving around 83. I also made sure I took in around 600mg of Mag a day the whole while on that higher D supplementation. I applied Mag externally and took it internally in many different ways so as to avoid diarrhea.

A place to ponder is Gabes Stage 1 eating plan http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22328 this can give ideas when you feel like there are none to be had

Yes lots to re-learn with MC but it is doable and we do get some semblance of life with good healing in the gut
Hugs
Erica

[Gabes-Apg]

hi there Lisa

It doesn't have to be the new normal... you can heal and improve big time from where you are now.

not sure how much reading you have done here so far, but for me I have multiple AI issues, and other health issues and MC is more so a symptom not main health issue.
albeit, they are all very much linked - nutritional deficiencies, too many toxins/heavy metals, excess inflammation.

Healing, by healing I mean reduction in symptoms and improvement in quality of life, is very possible but it takes multiple aspects, low inflammation eating and lifestyle plan, having the right nutrients, clearing toxins /healing leaky gut.

to expand on Erica's post (and based on what I read in your post on the main page)
for now, I would not do any further tests. I would embrace our suggested eating plan and stick with supplementing with Vit d3 and magnesium. to increase magnesium I would add in Epsom salt foot soaks or baths.
eat small servings through the day and ensure you are having good protein every meal.

I will check out the ingredients of the Repair Vite - my concern is that if it has small amount of major MC trigger, this may be impacting your ability to improve even with the steroids.

To give you faith in what I and others are saying, just over 3 years ago I had multiple chronic AI issues, could barely get out of bed. with the right eating plan, right supplements, reducing toxins in my lifestyle etc, I am working 20 hours per week, only have one AI issue that is mild to moderate. For the first time in my adult life (I am 47) I have a near normal menstruation cycle thanks to clearing toxins and fixing key nutrient deficiencies.
For the first time in 5 years I am getting back into activities like bush walking and going away for weekends etc.

hope this helps, keep reading, keep asking questions. I am away from home at the moment, when I get some more time I will check out the ingredients of the repairVite.

breathe, relax knowing you are on the right path to healing and getting your life back
take care

[Over Achiever]

Thank you Gabes and Erica!

I will modify my Magnesium and D3 levels, and have started the Epsom salt baths as well. Gabes, I look forward to your assessment of the RepairVite. I will continue to read posts here and learn as much as I can. We who are new to this are lucky to have the benefits of all the research and successes and failures of those who have gone before us.

Thanks again!

Lisa

[Gabes-Apg]

RepairVite Ingredients

Supplement Facts
Serving size 1 scoop (5.767 g)
Servings per container 30

Amount Per Serving %DV
L-Glutamine 2500 mg*
Deglycyrrhizinated Licorice Extract (root) 500 mg*
Aloe Vera Extract (leaf) 200 mg*

Proprietary blend: 1510 mg* of Lactase, Maltase, Invertase, Amylase, Marshmallow Extract (root), Slippery Elm Extract (bark), MSM (methylsulfonylmethane), Gamma Oryzanol, Spanish Moss (Tillandsia usneoides) (whole plant), German Chamomile Extract (flower), Marigold Extract (Calendula officinalis) (flower), Cellulase.
*Daily Value (DV) not established.
Other ingredients: Natural flavor, luo han guo fruit extract.

It is a good combo of herbs that have been known to help with IBS / some IBD's.
Prior to MC I used liquid herbs (dispensed by practitioners) for 9 years. with the type of inflammation that i experienced with MC,
I could not tolerate them. with fair amount of gut healing etc, I can tolerate small amounts of 1-2 herbs. Still can not do items with multiple herb ingredients.

it also has lots of elements to aid digestion. albeit if you follow a low carb, minimal sugar whole food based eating plan then you dont need these ingredients.

[dolson]

I went to Russia and everybody got sick with Giardia. Mine was mild but many people were ill. The water was green and when I showered or took a bath, I kept my mouth close. I still got the green water in my system. If you drink stagnate water, you can get Giradia. Another nasty dilemma. We had a doctor in the hotel and he gave us antibiotics. That cured our Giradia. Dorothy