Mast Cell Disorders Forum - A blast from the past

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A blast from the past - returning to board (Read 3822 times)

Aggiegirl

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A blast from the past - returning to board
02/01/12 at 11:37:05

My experience with MCAD began about 5 years ago. I had gotten a really bad chest cold – the doctor I went to put me on a “Z-Pack” antibiotic and had me taking 800mg of Motrin daily. I just kept getting sicker and sicker. Couldn’t eat, lost 30 pounds in 3 months. The doctors could not figure out what was happening. I was having all kinds of heart issues, stomach issues, and I shook all the time. To make a long story short – I found a GREAT internist who listened to me and based on my symptoms she thought I might have Mast Cell Disease. She referred me to a Gastroenterologist that specializes in Mast Cell issues. He ran numerous tests and diagnosed me with MACD. He put me on Zyrtec, Zantac and Vistaril.

I had suffered from “mysterious” stomach problems since I was 3 years old. I’ve been to numerous doctors throughout my life that have diagnosed me with ulcers, IBS, and the good ‘ole “it’s all in your head” diagnosis. Needless to say – you cannot imagine how thankful I was to find TWO doctors that understood completely what I was going through and to find out that I had an illness that was manageable and “not all in my head!”

The catalyst to the severe illness 5 years ago was the Z-Pack and Motrin. So fast forward 5 years – I have slowly gotten back to “normal” and was doing great. Over the Christmas holiday, I got another chest cold and the doctor gave me a Z-Pack and like an IDIOT I took the whole thing and now I’m in the middle of a huge flare. Shaky, weak, sick to my stomach, and all the other symptoms – my new personal favorite is now my ears ring all the time!!!! Oh – and I have a lot of bladder pain now….which is a delight! I can eat hardly anything. I’m still take Zyrtec and Zantac and Vistaril – which all help, but still feeling really bad. I just hope this time it doesn’t take 3 years to get back to feeling normal. I’m back to testing foods to try to figure out what I will react to.

I was wondering if anyone reacts to peanut butter? I seem to be craving that, but haven’t tried it because I don’t want it to make me sick.

I am so thankful for this website. Whenever I have problems, this is the first place I go. It’s so wonderful to have such a supportive group to learn from and communicate with. So a huge THANK YOU to everyone who contributes and keeps the board running!!!!

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Lisa

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Volta Redonda, RJ Brazil

Re: A blast from the past - returning to board
Reply #1 - 02/01/12 at 16:18:05

Hi Aggie! Welcome back, but I´m really sorry you had to come back!!!

I suggest that you try taking your meds and taking an extra dose in the middle of your normal schedule. If you take them at 7am and 6pm as your normal schedule, then slip the same amounts you have and add them at 1PM so that you don´t go more than 5 hours without a reinforcement. And you might want to add an additional H1 to right before you retire for the night so that you can cover the early morning hours.

You may not have to do this for long, for it may help you regain your stability quicker and then you pull back as you see need to. It will help calm down the flare.

Hugs!

Lisa

Don´t forget, there is so much more to life than being sick!

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Aggiegirl Rookie Offline I Love YaBB 2! Posts: 19	Re: A blast from the past - returning to board Reply #2 - 02/02/12 at 05:54:19 Excellent ideas - thank you Lisa! I'll keep you posted! Have you heard of anyone on the board reacting to peanut butter?
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Lisa

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Volta Redonda, RJ Brazil

Re: A blast from the past - returning to board
Reply #3 - 02/04/12 at 03:48:26

No, Aggie, I've not. But remember, just cause you have a MC disorder doesn't mean you don't have an IgE allergy. You should get tested for peanuts and have a full IgE panel run - blood tests - so that you can see what kind of IgE mediated allergies you have. Then, as according to those allergies, avoid all of those known foods.

You see, they did a study on masto patients trying to find out whether we are more allergic than most people, trying to pin down whether or reacting is purely due to MCs acting up or if they are true allergies. The study found out that within the masto community we have the same tendency to being allergic as anybody else out there. So, you can indeed have regular IgE allergies, but you've got to be avoiding those IgE mediated food allergies like you do with any of your other known triggers. If you don't have an IgE allergy to something, then it's your masto that's causing it and that means that although you react to something like chocolate, on good days you may be able to handle it whereas on bad days it will send you over the edge.

Does that make sense??

So, do the IgE blood panel and see what you test positive to and then avoid those things. It will help your masto calm down!

Lisa

Don´t forget, there is so much more to life than being sick!

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Riverwn

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Gainesville, Florida

Re: A blast from the past - returning to board
Reply #4 - 02/04/12 at 06:41:02

Hi Aggie!!
I just wanted to put my welcome in to you too

Im so sorry youre suffering (again and again right?).. but youre smart and Lisa gave you some great suggestions. I think you will be better soon.
PS I would also suggest seeing a urologist--you may have Intersticial Cystitis, it seems to be common among Mast Cell patients because of activity in the lower colon migrates to the bladder easily. Hope youre feeling great soon

Hugs
Ramona

~~~Count Your Blessings!~~~

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Aggiegirl

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Re: A blast from the past - returning to board
Reply #5 - 02/05/12 at 13:53:06

Thank you for your responses Ramona and Lisa. I have been reading about the effect of Mast Cells on the bladder - and I do think it's probably time to see a urologist. Also I will ask my doctor about testing for food alergies. This darn disease is so frustrating. I was doing so good for so long and I am so mad at myself for not remembering that the Zpack was what sent me into my first tail spin and I did it to myself again!!! Good grief!! This flare has presented several new symptoms - my ears ring all the time, and the bladders spasms have been a particular delight! LOL. Seriously, though - it's hard not to get depressed. And the one thing this illness has taught me is that no one really cares about your illness other maybe your immediate family. People will say, "You don't look well, are you feeling okay?" and then glaze over if you talk about how you really feel, so I've learned to smile and say I feel fine when I actually feel like I'm on fire inside. I certainly feel isolated - and am so thankful for this board!! Thank you for your input and for listening and understanding! Hugs to all!

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