Wednesday, October 17, 2012

Treatment Update..Scary Episode...and.....Mold

Friday I had an appointment with my ME/CFS doctor. Because I'd had a significant increase in symptoms along with a couple new symptoms I emailed my doctor the following list for him to review prior to our appointment:

Symptoms for the past few weeks:

-low grade fevers early afternoon/evening
-at times it hurts to take a deep breath (lungs?) (started last Thursday evening)
-major increase in fatigue
-chills off and on
-sore throat (at night)
-swollen painful lymph nodes
-muscle aches
-major increase in cognitive problems (major)
-lack of appetite with weight loss
-about 4 weeks ago was having bleeding under the skin/easy bruising forearms and legs (it seems to have resolved)
-about 6 weeks ago had ‘red scratch-like marks appear in various places on my skin
-swollen sinuses especially at night (new)
-headaches mostly on right side 
-bad insomnia (the worst its ever been over the course of my illness)
-swollen painful knee and elbow joints and shoulder joints off and on (and finger joints)
-heart palpitations off and on
-significant increase in muscle weakness especially my left leg and below the shin bone

Is this die off from treating cpn? (I’ve been on antibiotics for it since March)
Or, a new infection?  a cfs relapse?
all of the above?
is it related to the igg subclass definciency? (low 1 and 3 subclass)

I’m living in an apartment with high humidity-concerned about mold/water damaged building


My doctor appreciated the list. We talked about what might be happening. I've been having these symptoms for the past 4-6 weeks but they weren't letting up not matter how much time I stayed in bed. The things that have changed that might have contributed to the onset are: 1) I ran out of Colostrum and coudn't afford more 2) same with Tranfer Factors 3) with Chelsea gone it has meant I'm inside the apartment a lot more.

As we continued talking about what was happening, my doctor wondered if Bartonella needed more treatment because of my history as well as the symptom picture. He said the symptoms fit the profile of many things but at that point it wasn't clear.. He was puzzled. I was surprised he was puzzled because he is usually quick with ideas and treatments.

Because of the fevers I tried to dismiss any thoughts that mold might be a factor. My doctor said mold illness can cause all these symptoms but he wasn't sure it was mold illness. He did say to start back on the Colostrum as soon as I could because that was more important for my immune system than the Transfer Factors. He also wanted me to start back on A-Bart which I've used in the past (with improvement).

So I started back on the Colostrum that night (I'd ordered some the day before) and I had some A-Bart leftover so I started that also on Friday night.

Today I woke up feeling a little bit of improvement. I overheard someone talking quite loud and went outside to investigate. It turns out that a new neighbor was preparing to move in. She had some workmen with her and she was talking on the phone to our landlord about some problems in her apartment. I introduced myself and so she told me what was going on.

I'd noticed that within a minute of being in her apartment I started to not feel well-almost like I could feel my blood pressure falling. It was strange. They were cleaning so I thought maybe it was the chemicals even though I haven't had any MCS type symptoms for quite some time.

As we were talking one of the repairman came over to her and said 'we found a bunch of mold in the closet' so we both followed him.

For some reason I went into the closet and just stood there staring at a sort of slimy greenish-black type of mold. That's Stachybotrys I thought to myself. And I just stood there. Someone had tried to clean it. The repairman said "I've taken pictures".

I wasn't feeling well so I walked the short distance to my apartment. I got some water and took a sip.

And I felt my throat close up. I could not breathe.

I thought maybe it was because I had choked on the water. I stood there trying to relax so my throat would open up. It did enough to be able to start gasping loudly for air.

I headed towards the front door thinking "I have to get some air". I was gasping so loudly for air that my cat got scared. it was this high pitched wheezing and other weird sound. I got my phone to call for help but I couldn't use my voice. So I went outside hoping to catch someone walking by to call 911. By this time I was feeling dizzy with not being able to get a full breath.

Once outside my airway opened up a little bit more so I could get more air into my lungs but it still wasn't enough. So I sat there for a long time. Then I laid down.

Eventually I came back inside and emailed my ME/CFS doctor. I told him what had happened. Here is his response:
Yes, this and what you described in your other e mail is mold related. You need to get out of your house. You are having a neurotoxic reaction to mold. Getting on a binder would help these symtoms, do you know if you tolerate Cholesyramine? Or you could use Zeolite or Chlorella
and then later after I asked if I should leave immediately or wait until I find a new place:
Try the Cholestyramine again, try mixing it with Pineapple juice. It would be best to leave your place as soon as possible. Ok to take your cloths as long as you either get them dry cleaned or washed in high head. It would be best to leave books and papers behind but you could get the place fogged for mold after you move out and then take your books after that is done.
Then I cried. This is the last thing I want to have to deal with right now.

I've only had two other episodes where my throat closed up like that. One was within the first year of getting sick and come to think of it I was living in that bad moldy apartment. The other occurred while visiting my next door neighbor to see their ceiling that she said was sagging. They were all perplexed as I rushed towards the door to get some air.

But it was never as bad as it was today. Today was a whole different ball game.

Saturday, October 13, 2012


I'm feeling piss poor physically so I'm not sure how this post will turn out. It's been good for me to be offline (for the most part)  this past week if for nothing else than to start to get a little more centered again. I  reflected on why my birthday was so difficult. As I reflected in the back of my mind I could hear the lyrics to the theme song from the movie Mahogany:

Do you know where you're going to?
Do you like the things that life is showing you
Where are you going to?
Do you know...?

Do you get
What you're hoping for
When you look behind you
There's no open door
What are you hoping for?
Do you know...?

On my birthday my response to the questions posed by this song was a resounding "No! I don't like where I'm going to! I didn't get what I hoped for!" I didn't know that I wanted to continue living with the limitations and purgatory nature of this disease. So it was time for me to make a decision-either s**t or get off the pot.

I know that the rest of my journey here on earth will be a difficult one. There will be joy as well but one  question I stared down on my birthday was 'do I have what it takes to live like this?'.

By "this" I mean living with this disease and all it entails. It means looking at the fact that I will probably never be in a relationship again, that I will continue to struggle with issues of isolation, that on some days simply waking up will be the most courageous act I can do, that I won't get to live in the city I want, that I will be poor, and that most of the time, until we get better treatments, I'll spend 99% of my time in pain and not feeling good (pain is now part of my daily experience).

I thought of my family and my precious nephew and niece, my kitty, my relatives, and all the potential for joy, for developing wonderful friendships in the ME/CFS community, and for the opportunity to be able to give back. I realized that even though life will be difficult I can still make something of it. I can find a way to give back (I even have some ideas). I realized its time to step fully into my life and figure out how to make the best of it. It's' not the life I had dreamed of for myself but its the only one I have. It's time to accept it as it is in all of its difficulties.

I was listening to one of my favorite poets (David Whyte) and was reminded of this poem:

Revelation Must Be Terrible

Revelation must be
   terrible with no time left
to say goodbye.

Imagine that moment
   staring at the still waters
with only the brief tremor

of your body to say
   you are leaving everything
and everyone you know behind.
Being far from home is hard, but you know,
   at least we are exiled together.

When you open your eyes to the world
you are on your own for
   the first time. No one is
even interested in saving you now

and the world steps in
   to test the calm fluidity of your body
from moment to moment

as if it believed you could join
   its vibrant dance
of fire and calmness and final stillness.

As if you were meant to be exactly
   where you are, as if
like the dark branch of a desert river

you could flow on without a speck
   of guilt and everything
everywhere would still be just as it should be.

As if your place in the world mattered
   and the world could
neither speak nor hear the fullness of

its own bitter and beautiful cry
   without the deep well
of your body resonating in the echo.

Knowing that it takes only
   that one, terrible
word to make the circle complete,

revelation must be terrible
   knowing you can
never hide your voice again.

  -- David Whyte
      from Fire in the Earth
      ©1992 Many Rivers Press

"No matter how far you are from yourself, no matter how exiled you feel from your contribution to the rest of the world; as a human being all you have to do is enumerate exactly the way you don’t feel at home in the world, say exactly how you don’t belong, and the moment you’ve uttered the exact dimensionality of your exile, you’re already taking the path back to the way - back to the place - you should be. You’re already on your way home."

"All that you have to do, actually, is enunciate the exact nature of your exile.” And that will open up your door to your conversation because there is no one else in the world that feels exiled in the way that you do. There is no one else who can feel far away from things with exactly the same coloration and tonality that you do. And therefore you must have faith in whatever you are presented with and many times in life for us it has to do with the way we have forgotten."
     - David Whyte
My notes condensed from a podcast "Midlife and the Great Unknown" (Sounds True/itunes)

I had a phone consult with me ME/CFS doctor yesterday. I'll talk about that in my next post. My apologies for the uneven format-I'm too fatigued to fix it.   : )

Monday, October 8, 2012


Friday night I came out of denial about how poorly I'm doing physically. I realized that I'm not crashed but in a full blow relapse.

It's true what they say-it's tough to experience this after a long period (for me) of having significant improvement.

Saturday was my birthday. It was a surprisingly difficult and lonely day. I was able to have a short visit with both my sisters as well as my niece and nephew. That was the highlight of my day.

Yesterday I continued to go downhill. In addition to the flu like symptoms I'm having an increase in muscle weakness-particularly in the front area of my ankles right below the distal tibia (lower shin bone). I can't walk around the block. I can walk a short distance, then I have to stop because of the muscle weakness. I'm also having some pain in my lungs (?) when I take a deep breath but only at night and its not daily. I don't have a cough. I'm also having bad cognitive problems, those fun me/cfs headaches, etc...

Last night I was so discouraged and scared that I broke down and sobbed. I couldn't stop it. There is so much grief. It's also scary to have a relapse like this living alone. I didn't prepare for it. I didn't expect it this soon.

This morning my neighbor knocked on my door. When I opened it she said "are you okay? what can I do for you?" I was confused as to why she was so worried. It turned out she overheard me crying through the walls.

I'm going to be offline for awhile. I'm not on facebook or anything. I have a phone appt with my me/cfs doctor on Friday. I can't afford it but I can't afford a prolonged relapse right now either.

Here's a link to a good article on relapse by Dr. Lapp. A paragraph people might find helpful if anyone else is experiencing one:

When relapses are prolonged, they become particularly onerous and discouraging. Since most relapses will start to improve with rest and extra self-care, one should look for triggers and perpetuating factors that might be prolonging the relapse. Perhaps the most common perpetuator is a lack of sleep. It is not unusual for sleep to deteriorate during a relapse, and attempts must be made to insure a regular, scheduled sleep. Eight to nine hours of sleep nightly are generally recommended, but it may be necessary to sleep longer during &down times”. Also, anxiety and depression always flare up during a relapse, and if untreated they may perpetuate the relapse by interfering with sleep, motivation, pain tolerance, and energy. It may be helpful to temporarily increase an antidepressant dose during such periods.Infections such as recurrent bronchitis or cystitis can both trigger and perpetuate “down times”, and in endemic areas persisting infections such as Lyme Disease can be the cause. 

I'll post again after my doctor appointment if I can.