CHOLESTYRAMINE & OTHER BAM MEDS

[jcml12]

I have been struggling to get back to somewhat of a normal for two months now after 6 years of normal. I am currently taking 9mg of Budesonide (it worked so well for me before but not so much now. It has at least slowed things down). As I have mentioned before in recent posts I was extremely careful in those 6 years with the occasional treat or GF product but for the majority very strict. Covid came & I believe the stress of that and owning a business etc is what set it off again. I went ahead and did another Entrolab test to see if anything had changed and it did show a few more reactions than the one 6 years ago but what it did show was higher Fecal Fat score 391 Units (Normal Range is less than 300 Units) and it showed Rice 2+ (when this was not even showing on previous test) and Walnut 3+ (which this appeared a 1+ on previous) and I cant even count on one hand over 6 years that I ate anything with walnut? I have been eating plain Turkey, a little Chicken (as that is a 2+), Lamb & a little Pork (again 2+), Duck Eggs, and potatoe's every now & then (I tend to get Kidney Stones so I have to watch this. I usually eat Paleo with have green veggies like Asparagus & Green Beans but after reading that people stick to protein only I have cut that out. I am 5'4" and down to 116 lbs. This is just some back ground again.
My main question is I have a doctor appt coming up on May 3rd and was considering asking the doctor to try BAM meds. I was wondering from all of you that currently take it, is it something you just take once a day or several times a day? I know you cant take it around the time of other RX's. Also I have high cholesterol and have not been able to take any statins due to a reaction (achy muscles in legs etc). Are the BAM products a statin? I know they say they are also used for cholesterol?

[HockeyMom]

I take 4 packets of cholestyramine twice a day. Take my fat soluble vitamins and magnesium with breakfast and take first dose of cholestyramine an hour after that. Take 4 more packets before bed...

[tex]

I'll add a few comments that come to mind as I read your post. Apparently your diet was compromised too often during those six years of "normal", because the inflammation level of your small intestine is much higher now than it was six years ago, according to your fecal fat score. You've accumulated a lot of damage, and that's a big part of the reason why it's taking you so long to get back on track. Damage to the small intestine is usually caused by gluten. That said, since you own a business, it's certainly possible that the pandemic has been the primary cause of all your information. we've found that high chronic stress levels are notorious for causing flares among MC patients who were in long-term remission. And unfortunately, there's no easy solution for regaining remission in those situations. The stress has to be brought down to a reasonable level before remission is likely to be regained. What was your gluten result on that last test?

Look at your overall score on those 11 additional allergenic foods. If it's above 12 or 13, you may need to be avoiding those 2+ foods, at least while you're trying to recover from this flare. Why take a chance on eating them when there are plenty of other foods that don't carry that risk? Turkey, lamb, duck, goose, venison, rabbit, etc., are all safer choices than chicken or pork if your test result on them was 2+. But again, if stress is the engine that's driving year flare, then making these changes may help, but they probably won't bring remission until the stress is brought under control.

Walnut has been shown by published research to be a powerful inflammation suppressant, so I doubt that walnut is a problem for you, but since your test results showed a 3+, it probably wouldn't hurt to avoid walnut, at least while you're trying to recover.

I hope this helps.

Tex

[SJH]

Cholestyramine has been a miracle for me. My dosage is three packets in the morning an hour after morning meds and supplements and three packets at night an hour after evening meds and supplements.

I came upon this miracle thanks to the good people on this board. I tried everything and finally this worked. I am a bamer!

I really had to talk my doctor into prescribing it for me since he is of the opinion that only GIs should be consulted on the subject of MC. After my last go of Budesonide this “moon faced”, discouraged individual figured there must be a stone left unturned for me to try, it was time.

I researched and re-read this board until I decided to give Cholestyramine a chance. It took five weeks of dedicated fine tuning and commitment to reach success.

I suggest you do a search on Hockey Mom and Polly and they will teach you everything you need to know about Cholestyramine.

I thank God daily for this board and the insight and sharing offered by it’s members. Thank you Tex for making all this help and assistance available to us.

[HockeyMom]

SJH-
I’m glad all my suffering and experimentation with cholestyramine has helped you out! That is why I still post here

Laine

[jcml12]

Tex,
My Mean Value was 23 (normal is 10) and Pork, Beef, Chicken & Tuna were 1+. I guess there could have been a cross contamination in the last 6 years but I eat Paleo so no grains what so ever. I do eat Lamb but I cant do rabbit or venison as they just have a wild taste to me and they just make me sick. There are not a lot of choices for me to get protein. It was extremely stressful after Covid hit as I have a essential business but most of my employees were working from home and I was the only one coming into the office and that means all the phone calls ets. It is much better now (stress wise). It is so weird that Walnut would show up on the test a 3+ since I rarely ate them? Things have slowed down but not normal by any means.
I just didnt know if I should try the Cholestyramine or not? What are BAM symptoms?

[tex]

23 is A relatively high score on that test. In the previous post you listed chicken and pork as 2+ foods. That makes trying to make menu suggestions somewhat confusing, to say the least. If you don't like rabbit or venison, there are many other choices. How about Cornish hens, duck, goose, pheasant, etc.?

Since your symptoms have improved, your main problem may be stress. The symptoms of BAM are primarily persistent diarrhea that doesn't respond to conventional treatments.

Tex

[jcml12]

Tex,

Sorry I was writing details too quick and trying to work at the same time. Pork, Beef, Chicken & Tuna = 1+, Rice, Corn, Almond & Cashew = 2+ and Oat & Walnut = 3+. I am not sure what "Mean Value 11 Antigenic Foods" even means? I was 50 on Soy and am very careful with that, 34 on Chicken Eggs and stopped those but over the 6 years of remission I did eat chicken eggs almost daily, 16 on Casein & I stay away and have for 10 plus years as Lactose Intolerant & 69 on Anti Gliadin.
I am improving but really really slow. In other words I have gone from water with some specks in it to really wet soft serve and normal color now. It is only on this site that a person can discuss their potty with others and I am so thankful for that.
If you could explain the Mean Value thing that would be awesome. I thank all of you for all your support and help. I don't know where I would be without all of you!

[tex]

The "11 other antigenic foods" test involves relative results, rather than absolute results. Consequently, you have to interpret their importance based on the overall score and their Individual rankings, Which makes the results a bit trickier to work with. 23 is a relatively high score, so you should eat 1+ foods with caution. You may or may not be able to tolerate them if you eat them very often. With a score of 23, you probably should avoid not only all the 3+ foods, but the 2+ foods as well. Certainly you should do that while you're still trying to recover. There's no logical reason why you would want to take chances that might ruin your recovery.

I hope this helps.

Tex

[Pebbledash]

I experimented with BAM tablets a few months back as a potentially more convenient treatment than cholestyramine powder. It didn't work, so I went straight back to cholestyramine. Can't say why it didn't work as it presumably acts in the same way.

Cholestyramine has really helped me, but only after I read posts on here by Laine. That is: instead of taking it at random times, take it straight after eating, and consider raising the official dose for a while. For me, now I take the prescribed dose (2 scoops) once a day after my main evening meal only--and it has really helped turned things around. I was taking 3-5 scoops for a while, but now 2 scoops seems to be fine, as long as I take it after eating.

Laine's advice--to take after meals and to be prepared to increase the dose--was a game-changer for me. I should add that Budesonide worked for me first time around, very dramatic impact, but even before I completed the course of treatment, a very stressful event caused another flare up, and budesonide has never worked the same since--this is where cholestyramine stepped in and really helped.

Cheers,
Paul