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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Hey Klutzo! :)

Lisa

Senior Member
Messages
453
Location
Western Washington
Hi Lisa,
I also have to take massive amts. of expensive pancreatic enzymes to be able to digest food now. I would be interested in what you take and the progress you have with them. You have an expert doctor, which I do not, so maybe I can pick your brain once in awhile. I am back to square one after two yrs. of treatment, and am having an MRI of my pancreas this week.

Cort set up a separate thread for the many people who were conversing with me about liver, pancreas and gallbladder issues. I am not sure which section it is in, but that is where any future discussion should go.

I read several entries in your blog and really enjoyed them. My best friend since age 12 lives on Lummi Island in Puget Sound, and if your climate is anything like where she lives, I can't imagine living in a tent there. I have MCS too, but not that badly. You are really making lemondade out of your lemons and I admire that.

klutzo

I've not a clue where that other thread might be either so I'll reply to you here so I don't hijack Tree's thread. :)

I've been taking pacreatin 8x by Source Naturals. I haven't tried any others, was recommended them by someone here on the forums. If I had thought to ask my doc what type to take when he said we should take them, it might be a bit more helpful. lol

I have noticed they do tend to help with my main meals, I can tell a difference if I don't use them. And today I just found out that they are very helpful with a rice intolerance I have had all my life.

Seems I don't produce enzymes to digest rice bran or protein from brown rice. But this detox supplement my doc said I should take has both in a large quantity. :rolleyes: I've been working on how to help my digestive system tolerate it and today found that if I open a capsule of enzymes and take it at the same time I drink the powder, I have ZERO problems with it. :D

I'm absolutely thrilled! :D

So yeah, they do help. hehe :)

Thanks for reading some of my blog. :D

I do have very similar weather as Lummi Island except they probably get a bit more wind where as I get a bit more cold.

Have a beautiful day! :D

Lisa :)
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Lisa, digestive meds

I have issues with my digestion also, IBS I guess?:eek:

I believe I was taking a supplement by the name of Pan Plex 2 phase?:confused:

I was having some legal issues at work, still do! Don't like to accommodate us sickies!!:mad:

I digress, so I mentioned to my lawyer how supplements end up costing a lot and she suggested asking my Dr about a prescription alternative. So I did and he put me on 10mg of Creon with every meal. :rolleyes:

It cost my insurance 200 dollars a month but my copay was 10 and I think now 25 dollars. I built up a reserve, some days only 2 meals,;) but I will eventually go through my prescription company, Express Scripts and get 3 months with a 1 month copay!:)

FYI:D
 

Lisa

Senior Member
Messages
453
Location
Western Washington
Thanks for the info ggingues:D

Looks like I'll have to keep buying these from the store. The added ingredients in Creon are a little scary for my MCS. :eek:

"CREON contains the following inactive ingredients: cetyl alcohol, dimethicone, hypromellose phthalate, polyethylene glycol, and triethyl citrate. The imprinting ink on the capsule contains dimethicone, 2-ethoxyethanol, shellac, soya lecithin, and titanium dioxide."

and then depending on what dosage per cap is the type of dye they use, but otherwise it also has:
"The shells contain FD&C Blue No. 2, gelatin, red iron oxide, sodium lauryl sulfate, titanium dioxide, and yellow iron oxide."

The pancreatin I buy has:
"Other Ingredients: Gelatin (capsule) and magnesium stearate."

But it likely may help someone else reading this who doesn't have to worry about seriously sluggish detox pathways like I do and can handle the added ingredients without any trouble. :D

Thanks for posting!

Lisa :)
 

klutzo

Senior Member
Messages
564
Location
Florida
Enzymes

Hi Lisa,
The thread for this subject is directly below this thread! ;) Cort moved it here. It says gallbladder and pancreas or something like that.

Pancreatin is the strongest OTC enzyme you can get, but is light years weaker than Creon. My doc wanted me on max dose Creon but my ins. would not pay for it at all and it was $500 a month. I take the generic, pancrelipase, which is $300 am month and I am now in the Medicare doughnut hole so I must pay the entire cost. Normally it costs me less. Next year, I will reach the doughnut hole by June and have to pay for all my drugs the rest of the year.

I am very glad pancreatin works for you. It worked for me ten yrs. ago, but the problem has progressed. Even Creon is not strong enough now and I am really sick (and poor!).

Happy Halloween,
klutzo