at a serious low point

Zizzle · Post by **Zizzle** » Fri Oct 14, 2011 7:56 am

I agree with Mary Beth. You can request a stain for mast cells for several weeks after your pathology has been completed (They hold on to the tissue samples for a while). I would call my doctor and beg that they add the stain.

Polly · Post by **Polly** » Fri Oct 14, 2011 8:06 am

Hi Lisa,

What a rough time you are having. Here are some big hugs for you:
:bigbighug:

Mary Beth made some excellent points about the mast cells and IGA deficiency.

The emotional aspects are indeed difficult. When I have been in a flare, I find I have to increase my exercise in both intensity and duration, meditate regularly, and turn off the media. All of that yelling/sensational hype really wears on me after a while. In fact, I now listen much more to music than the radio or TV.

Hang in there and please stick around!

Love,

Polly

quesada · Post by **quesada** » Fri Oct 14, 2011 8:16 am

I just emailed my doctor about the mast cells. Let's see if she tested for it. If not I hope it's not too late.
I am a pretty regular exerciser but sometimes I am so tired it's hard - I just feel bone tired (I had mono this spring and I think it still lingers).
Thanks for all of your positiveness. I will try to pull myself together. It's hard when you feel sick all the time - if anything, you all understand that!
Lisa

mbeezie · Post by **mbeezie** » Fri Oct 14, 2011 8:32 am

Lisa,

Doctors do not routinely check for mast cells so I doubt she will check unless you demand it. If she doesn't and all else comes back negative then she could try a serum tryptase, which is also an indicator of mast cells.

You're right, you don't seem to be IGA deficient. MRT will give you a better idea. You might talk with your dietitian about seeing if a low histamine diet (on top of MRT) might be of benefit. Again, those of is with mast cell problems find some relief with that diet.

Please don't leave the board. I didn't match the typical MC profile but hung around until I figured out what helped me, and that in turn helped others in the same situation. This is the best forum for support and accurate information.

Polly,

100% agree on exercise and meditating . . . can't say enough about how powerful these tools are.

Mary Beth

Zizzle · Post by **Zizzle** » Fri Oct 14, 2011 8:32 am

You had mono this spring? For the first time? Or was this reactivation of a prior bout in adolescence? How old are you?
Your symptoms *could possibly* be related to the mono (Epstein Barr Virus), which has the potential to cause all sorts of autoimmune-like symptoms. The most widely recognized one is chronic fatigue syndrome.

quesada · Post by **quesada** » Fri Oct 14, 2011 8:39 am

I did have mono this spring - I also had it when I was in high school. Weird to get it again. My internist checked me in maybe May and I think she tested for Epstein-Barr too -- all was negative. I can ask her about the EB.
Do I have to tell my age? :) Let's just say I am not in my 30s anymore.....
I will also say that my symptoms have been going on since about 2005, so I don't think it's from the mono/ CFS/ or EB.

Zizzle · Post by **Zizzle** » Fri Oct 14, 2011 9:17 am

If you had mono as a teen, it was probably a EBV reactivation, which can happen due to stress and weakened immune function. Strange that you would not test positive for EBV, the virus that causes mono. How did they know it was mono?

quesada · Post by **quesada** » Fri Oct 14, 2011 9:30 am

I don't remember - I think I tested pos for the EBV in Feb/ March but not in May.
My liver was enlarged and I was so exhausted I couldn't go to work.

MBombardier · Post by **MBombardier** » Sat Oct 15, 2011 11:26 am

Lisa, I wonder about the IgA results. I know that our IgA levels go up and down. I also had all negative tests at Enterolab and when my IgA was tested, it was normal. I have been finding out my intolerances through the process of elimination.

Hang in there...

bhm2wfd · Post by **bhm2wfd** » Tue Oct 18, 2011 7:47 am

Sounds like we all have had the same frustration at some point. I have had LC for 6 years and like you nothing has helped! It is difficult to find the good in most days.

MaggieRedwings · Post by **MaggieRedwings** » Tue Oct 18, 2011 10:30 am

Last thing you need to worry about is giving our age. I am 63 and proud of it. Still very young at heart.

Maggie

Sharaine · Post by **Sharaine** » Sat Oct 22, 2011 6:43 pm

Lisa,

So sorry that you have had such a bad run of luck lately. I do hope you tried to get FedEx to cover the expense of the blood draw and the shipping since they blew it last time.

I second others' comments here; we'd like you to stay on while you get this figured out. We're here for you!

Sharaine :bigbighug:

Gabes-Apg · Post by **Gabes-Apg** » Sat Oct 22, 2011 11:36 pm

Lisa
i hope today has been better than yesterday.

the occurance of MC symptoms (and other medical issues) is tiring, it can really test our tenancity to gain control.
and knowing there is no quick fix or guaranteed solution can be overwhelming

times like this, it is important to take it one meal at a time, and one day at a time. forget what happened yesterday and put our energies into making today better.

The liver issues can be connected to the inflammation of the MC and leaky gut. if our digestion is not working properly it affects all the other digestion organs. when i was first diagnosed my eating plan was focusssed on low inflammation, easy to digest gut healing meals, these ingredients were not expensive and readily available.
Most people have minimised symptoms and even gone into remission by sticking to this type of eating plan.

you are not alone on the journey, everyone here has had their bad days/weeks/months.

i have my fingers crossed that things improve soon