Erica P-G journal

[Erica P-G]

Thanks Tex!
I hope you are doing well these days....I thought of you when we landed in Dallas/Fort Worth on a layover before heading to Portland It was mighty hot there too! Our intention was to visit McAllen Tx (my moms child hood school friend) but it didn't pan out as her grand daughter caught covid I'm sure it would have been even hotter down there!

Hugs
Erica

[tex]

Hi Erica,

Thanks, I'm staying out of circulation and doing well so far. I hope you're still continuing to do well.

Now is not a particularly great time to visit Texas. We seem to be stuck in a heat wave, and COVID-19 is rompin' and stompin' in many parts of the state, including the valley. We had 108 degrees for a high temp yesterday, and 109 today.

Hugs,
Tex

[Erica P-G]

My goodness Tex, that is mighty hot and the longer it continues is rough on everything! We've gotten waves of it, which isn't unusual for SE Washington during this time of year but I'm ready for the more routine 80-90's now

I think the heat still messes with my LC....or else it's a combo of eating something, the heat and possibly hormones (...I think those may be my biggest nemesis!) that has disrupted my great running streak on bathroom trips. Nothing like it used to be, but still annoying, and I deal with it. Nothing is routine around me anymore including the fact that I am not going to a job and going through all the motions that I used to. I don't know what to do with myself right now....I still have the potential that I will be returning to my bookkeeping position in January for the Spring 2021 school year but because that isn't guaranteed I think I'm a little nervous on the inside which doesn't help this LC thing either.

I honestly don't know what people are doing and how everyone is coping during this time, I'm a relatively calm person, but I'm so lost that I just do random things now, no time schedule, no urgency on when something gets done....if this is what retirement feels like I'm not going to be doing it any time soon without better planning, LOL.

Hugs
Erica

[Erica P-G]

There has been something about the year 2020, losing my job, regaining it back January 2021, and then catching a heck-of-a cold in April only to exacerbate it with major pollen in the PNorthwest so my gut has been on high alert and I can't get it to find a happy place no matter how hard I try

I re-read Tex's book....and have come to the conclusion that I am going to be one of those people that have fought the hard fight to try to do everything as natural as possible and become healed to the best of my ability without medicine, only to now be destined to have a little of it in my life probably for life or until I don't plan to socialize or have any stress in my life what so ever. (I'm thinking the later is unrealistic so budesonide in the most lowest amount will be in my future). I can't keep fighting the battle let alone win the war the way I am going. I've tried so hard to be a natural survivor in the MC conundrum. I almost feel like a failure, so this post is pretty hard to write

I appreciate Tex's research so much....there still isn't any new information on this disease and I'm starting to feel it has been genetic on my Maternal side since it has hit all the females for the last 3 generations in my life, including one with diverticulitis (my mom).

With this post I guess I'm just trying to let anyone reading it know that because this disease is so person specific, one should do all they can to find what works for them, for their moment in life, because life is short and wasting it on agonizing over its annoyances and inconveniences is time consuming to say the least. I gave it over 5 years of trial and error, with an Enterolab result to guide me as well. I still have had to make the choice to forgo with a mild medicine treatment, for how long I don't know at this point, I just know I have to do something different in order to gain function of life for myself. Thankfully the Alldaychemist is still active and able to send Budez CR to the US....because I am done wasting my time with Drs that still don't understand what I'm going through.

Hugs
Erica

[tex]

Hi Erica,

Before you settle on the budesonide selection, have you tried cholestyramine? When you've fought the good fight, and can't regain control, sometimes the right dose of the Sandoz brand of cholestyramine can work wonders. As Laine will attest, you have to experiment until you find the dose that works, but once you find it, you can control the disease without the long-term side effect risks of budesonide.

Treatments with cholestyramine early on don't fall under this rule, because they usually don't work anyway. But if you've already tried the Sandoz brand of cholestyramine lately, after years of dieting, and couldn't get it to work, I apologize for wasting your time reading this. If you haven't tried it recently, It's definitely worth a try.

Tex

[Erica P-G]

Thank you Tex,

I have a couple older exp containers of it left over from the last experiment with it, but I also remember seeing some yellow in the stool at that time so it made sense it could be BAM. Now I don't see that yellow, it's just angry WD and it's wearing me out. We've had the worst pollen season and tons of wind of blow it all around here in Washington. Winter wasn't too bad but I wasn't perfect during that time either, just on the cusp of one wrong move and get ready for a bad flare.

I've only taken 2 doses 9mg and my intestines are the quietest I've felt them in a long time. It's a welcome change because I couldn't get antihistamines to work for the last 2 months, slept the most sound I can remember last night. Perhaps if this works for a year or so and I do a major slow taper I can wean off this roller coaster of a ride I have been on....and life will be back to a better normal. I know budesonide isn't looked at as being something to use for life (but I have seen some people say they used it with a minimal dose per week for years), but I put so much focus on what I do on a daily basis it's exhausting me. I just want to live for a while without scrutinizing every move I make. I haven't found very many food options that I love or can tolerate eating every single day especially when my enterolab results show I react to G, D, S and Egg. When the gut is reacting, everything eaten is not tolerated so I revert back to the few items that are deemed to be safe and can only get to a semi-normal state, that I'm not happy with.

I guess I'm a little depressed....I've been so gung-ho trying to get into the right groove with this MC that it has officially driven me crazy. I need a break from it to get my bearings straight. I suppose I could try the Cholest but my (gut) feeling says I may need something a bit stronger to hit what's been going on to kick it down a notch or two. I've never seen it this hard to control in the last 2 years. Since I haven't been on the Budez but only a couple days I could give the Cholest a shot

I appreciate your suggestions Tex....so please feel free to send them my way as needed.
Hugs
Erica

[tex]

I hear you, and I agree that this disease well wear you down if you can't get it under control. And you're quite correct about budesonide — we have some members who've been using it for 10 years or more at reduced rates with no problems (at least, no significant problems).

I have one more suggestion, regarding allergy season. Try a DAO supplement once or twice a day during allergy season in order to prevent pollen allergies from affecting your digestive system. It's not sold for that purpose — it's sold to prevent reactions from high histamine foods. But it works so well for some people, that they don't need to take antihistamines during pollen season. I haven't tried it for that purpose, myself, but if you read the MCF Newsletter, you know that it works very well for me for limiting histamine reactions from foods. Anyway, after reading your last post, it occurred to me that a DAO supplement might be a good solution for MC patients who have pollen allergies. The cheapest and most effective product I've found is called HiistaResist.

https://www.amazon.com/HistaResistTM-Hi ... B07RQ56JQ5

Hugs,

Tex

[Erica P-G]

Thank you Tex,
I’ve got it on order, should get it by Friday. I’m happy to try this natural approach to alleviating the dang mucus that continually is being made by my sinus cavities
Gets tiring after a while swallowing or spitting into a tissue because quite frankly I really don’t like swallowing mucus yuck Pollen is high for trees right now, I suspect grass is next...maybe that one won’t be quite as bad, I can only hope.
Again, thanks for the suggestions
Hugs
Erica

[Harmony33]

Erica, I’m so sorry to hear of your frustrations!

I, too, have been miserable/frustrated for two weeks. At first, I blamed myself for eating/doing…. What?

In my case, I’m kinda close to normal for a year (carefully using all I’ve learned through this forum/elimination diet/no meals out) but then have had a relapse each May for the past three years. Each May… hmmm? I recently wondered if it could be due to allergies instead of me eating the wrong thing? I do get so weary of blaming myself for symptoms. Sigh.

So I’ve taken Claritin for the past three days—much better. Could it be that simple???? Probably not, but I’m hopeful.

I truly hope you feel better very, very soon!

Harmony

[Erica P-G]

Thank you Harmony,

Your kind words are uplifting

Yes histamine.....it can be that easy to just take an allergy med. I sure hope it is all you need on your journey, I was able to do it for a couple years. I'm not exactly sure if I've just put to many variations of food types in my mix while still reacting after a lengthy cold and for it to extend into continued allergy/sinus annoyance probably is just too much for my body to handle this year.

Most of the reactions have been too much histamine in the gut...but when one can't get back to a happy medium the whole show must be stopped and re-started all over again (which is where I believe I am).

I can tell you have a strong desire to maintain....so for the sake of staying sane I hope this year of symptoms lighten up for the both of us

[tex]

I believe I read somewhere, probably on one of the better-known Internet naturopathic websites, that there's evidence that long-term use of antihistamines depletes DAO, so that eventually they become self-defeating. In other words, instead of preventing histamine reactions, using them long-term will eventually lead to them actually causing histamine symptoms. My own experience tends to verify that. These days, I only use antihistamines on the worst pollen days, and I seem to get much better results than trying to use them as an everyday preventive.

I located that reference, it's in the article at the link below, where she says:

Although histamine blockers, a class of acid-reducing drugs, seem like they would help prevent histamine intolerance, these medications can actually deplete DAO enzyme levels in your body.

I assume that whe's referring to H2 antihistamines here, but why wouldn't that also apply to H1 antihistamines?

https://www.amymyersmd.com/article/hist ... tolerance/

Tex

[Harmony33]

Thanks as always, Tex. I’ll adjust my diet with an eye to histamines, try some DAO supplements and report back on another thread, so I don’t hijack Erica’s Journal.

I hope your current flare is already much diminished Erica, both in body and spirit. Hang in there!

[Erica P-G]

Thanks for the reminder Tex,

I knew I'd heard long term antihistamines weren't good for people (and it was probably here that I learned that). I need to pay closer attention to that too. I did start my Budez and paired it with 1 benedryl last night and I had a quiet gut this morning. I will get back on track

Thanks Harmony....a day at a time indeed