Marcia,
I was having a problem with our house.  We had mold hiding in the duct work.  It was being thrown everywhere everytime the furnace or air conditioning came on.  It was a mess...I was a mess. I would walk into the house and have to turn around and walk out because my throat would start swelling.  This was an ongoing thing for a couple of months, I lived in a tent for a week, stayed with my mother in law for a week(not sure which was worse) , we lived in a motel for three weeks, then I went to AZ and stayed 3 weeks with my parents. Came home and still had a problem even after we had removed the mold.  I think that the spores were just everywhere and very hard to get rid of.  So my husband fixed up the mini barn for me to stay in until we could figure out what to do next.  So, I stayed out there for a long 16 days.  Finally I couldn't stand it any longer, it was cold and damp, so we bought a huge, $1000 air cleaner and closed off the duct work to our bed room. I had a friend come over and we wiped down everything with bleach water to get rid of the spores.  Got rid of the carpeting and all furniture in our house that was cloth.  I stayed in my room for several months, then when I went on mast cell stablizers I got to where I could stay out of my room longer and longer.  Thankfully.  Now it might be combination of the meds and the spores being cleaned over past year but I can USUALLY go out of my room for most of the day.  On bad days I just linger in my room.  MY ADVICE WOULD BE TO MOVE! Even if it takes a few months!  It will not get better until you or the allergen is removed and sounds like the removal process will be harmful as well.  When you go to look for a new place don't medicate(if you can do that safely) so that you will react if there is something there that will be a problem.  We have considered moving but we would loose at least $20,000 on our home right now, plus we have removed every carpet and all the mold and we don't know what we would end up with.  So for now we are staying put... at least I have my clean room where we are.

Steroids can be helpful but they are not intended to be taken long term.  They can damage the body if taken long term and they do cause weight gain.  But they can be miracle workers for short term. I am sure there are others on the forum that have had more experiece with them than me.  I had to take several rounds  when I had an allergic reaction to Plaquinil.  Plaquinil is a quinine med and should never be taken by someone with a mast cell disorder.  I didn't know that I had a mast cell issue at the time, so I had a severe rash and anaphylaxic reaction that would happen everytime the steroid would run out.  Took a couple of rounds until the plaquinil was out of my system.  Also It must be tapered when you take it because I think it is hard on your heart...not sure but someone that has taken it often will know more than I do!

Thanks. I'm realizing that I really need to move. The closets here smell musty too so it would take too much to make this place safe for me. Bummer. It's so expensive and I'm so freaking tired from cfs that this is going to he a pita.

I'm going to ask for low dose steroids just to get me out of this rut.
I tried taking two tsp of children's benadryl (double my normal dose) last night and I've got a headache from dehydration. I always react to Benadryl this way.

Zyrtec makes me feel drowsy and uncoordinated. I think it can cross the bbb of those with damaged bbb. I've had numerous neuro problems over the years including ataxia for 16 years and seizures still.

From what I've read I may feel better on steroids. I have adrenal fatigue, pain, low bp, low blood sugar, etc.  I hope it doesn't put weight on me.

Tx .. I'll let you know how it goes..

I see that "quinine" is on the TMS list.  Although plaquenil is not the same thing as quinine, look at it this way...  For some mast cell patients, aspirin is a beneficial drug.  It reduces flushing by helping to flush prostaglandins out of the body.  For others (me included) aspirin is a no-no.  It's an NSAID and a blood thinner.  Same drug, different reactions... even in mast cell patients, regardless of the exact type of mast cell disorder.

The TMS list says "drugs to use with caution," not "absolutely never use."  I don't doubt that you had a negative reaction, but Plaquenil is commonly used to treat systemic autoimmune disorders... I've heard of other mast cell patients taking it.

Heather

Marcia,
What did the doc do for you?

Well, I'm having a totally unexpected reaction to this. For the first time in many many years, I'm urinating without any straining.  It feels like I'm actually emptying my whole bladder at one time too.  
I normally have to sit on the toilet for a few minutes for all of it to drain. And then it felt like some was left.

I noticed this immediately after taking the first pill yesterday.

One of my very first symptoms of me/cfs was bladder spasms. Not pleasant.

I seem to need these.

Kewl !

Joan wrote on 12/13/12 at 16:45:05:


The orapred eliminated my urinary symptoms.. Wal-zyr, benadryl, etc are helping my allergy and oi symptoms.. Eliminatng triggers via Diet, etc, esp gluten, eliminated most of my other cfs symptoms.

My body fell apart in 1990 and I  was dx with cfs in 1992. Turns out that my doctors were just too stupid to know what to look for so they decided to destroy my life. And countless others.

Btw, I just read that aspartame has been linked to seizures. Mylan montelukast 5 mg contains aspartame.   It's only 6 am here so I only read article titles. I'll read up on it later. Steroids are causing insomnia.  I've been sleeping ok since 2006.

Tc and avoid doctors ... marcia