Comments | mastocytosis: might as well make another update

brigid in mastocytosis

might as well make another update

Jun 06, 2007 18:07

I saw Dr. Castells, who is apparently at the forefront of masto research and she has decided to put me on the pretty typical regimen of hi1 and h2 blockera and gastrocrom. then my husband and i are going to go to canada to get some ketofin, since that is supposed to be the best drug aside from the gastrocrom ( Read more... )

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stomach problems anonymous June 15 2007, 21:16:06 UTC

youve got stomach problems because your stomach is having an allergic reaction..changing diet doesnt help that much because its going to freak out on almost everything...youve got to give your stomach an antihistamine like zantac,pepcid or tagamet. I've started taking a pepcid in the morning and that helps alot
Tony

Re: stomach problems brigid June 15 2007, 21:47:02 UTC

i'm taking an h1 blocker right now, plus a mast cell stabilizer and those have helped alot.

Re: stomach problems anonymous June 15 2007, 22:04:53 UTC

DO you have any allergies? Like to cats,hayfever,perfumes....sensitive skin?
Tony

Re: stomach problems brigid June 15 2007, 22:31:30 UTC

i have mastocytosis.

i do have a mold allergy, but that is it.

Re: stomach problems anonymous June 15 2007, 22:52:03 UTC

I have masto also....
I'm no doctor yet I'm sure almost all doctors(99.99%) have no idea what its about.I,ve spent alot of time researching this and have come to the conclusion that masto comes about because some bad switches have been flipped in our bodies and there in a constant state of freaking out and releasing histamines......This manifests itself in two obvious forms -
1- stomach problems because our insides are producing histamines like crazy & reacting to what we eat
2- skin spots and rashes due to the excessive histamine release because of our screwed up insides or outside allergies, thus my question concerning your "outside" allergies.
Also if your're a stressed out person I would strongly reccomend meditation or yoga etc.
We are in a constant battle to calm down our system....
Tony

Re: stomach problems brigid June 15 2007, 23:29:05 UTC

i am seeing literally one of the top specialists in the country for this disease, so i feel pretty comfortable in the treatment i am receiving...right now i'm taking an h1 blocker and a mast cell stabilizer. i'm also getting a prescription for ketotifen which is another h1 blocker that also stabilizes mast cells.

i'm slowly ramping up one medication at a time...my dr has said if i go from 0 to 4 at once i might put myself ina position for more symptoms, and i'm apt to agree with her.

Re: stomach problems anonymous June 16 2007, 02:13:44 UTC

Thanks for starting the thread....I have to go for a couple days but I'd like to start up again next week. I have alot to rant and rave about..some of which you might find interesting......:)
Hang in there
Tony

Re: stomach problems brigid June 16 2007, 02:18:52 UTC

ah so you're going to leave me hanging!

Re: stomach problems anonymous June 16 2007, 02:51:57 UTC

realize a good doctor is an allie/good source for information...not the be all/end all..you might know as much as your doctor knows now.....H1,H2,gastrocrom etc are symptom relievers...we want to address the cause...
I'll elaborate next week
Talk soon
Tony

Re: stomach problems brigid June 16 2007, 03:03:29 UTC

why not elaborate now?
i'm really curious as to what you have to say.
do you take part in any of the masto lists?

Re: stomach problems brigid June 16 2007, 03:23:46 UTC

i don't mean to be bruque with my last comment, but it is almost as if you're implying you have a greater answer, which of course as someone suffering from this, i would love to know

Re: stomach problems brigid June 21 2007, 11:35:19 UTC

c'mon tony, you're leaving me hanging here...you seem to have knowledge about addressing the cause that i would love to hear.

Re: stomach problems anonymous June 23 2007, 01:55:00 UTC

Brigid, sorry for the late reply....I'll have to spread out my rants and raves for a few days...... I'm somewhat frazzeled this week because my father is going thru chemotherapy and some scum bag stole my business partner/girlfriend's card number and drained the business account. So, I dont want to ramble on like some crazy person because I'm pissed off ( ... )

Re: stomach problems brigid June 23 2007, 02:09:50 UTC

my doctor, you can google her if you want (mariana castells) is actually primarily a researcher who also sees patients and uses her patients as studies as well.

i have not even heard of PUVA, what is that?

have you done the Total Skin Electron Beam Radiation? where did you find that it was a cure? i looked it up but i didn't really find any relevant info on masto.

a masto list is a mailing list for people with masto, where they discuss new research, treatment options, etc.

Re: stomach problems brigid July 7 2007, 05:28:21 UTC

tony,

you've been silent, i hope all is well

Re: stomach problems anonymous July 3 2009, 04:37:35 UTC

Hi there. I have Indolent Systemic Mastocytosis and I have a question for you. My doctor does not want to treat me yet until my blood changes. At the moment it's very normal. Is this the case with you? When did your doctor decide to treat and why? Thanks for your valuable information. concerned - Mel

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