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.


Cusp said...

Oh frightening. Mould is frightful stuff. When we lived in our other house (about 150 years old) I had awful issues with mould.

You do need to get out of there and tbh, if possible, I'd just leave clothes etc behind. Don't bother with getting them cleaned: I wouldn't trust that they'd be OK again and dry-cleaning is FULL of frightful chemicals you want to avoid.

This IS the last thing you need right now. I do hope you can find somewhere else asap. and I wish the Universe would give you a break :(


leelaplay said...

OMG - what a nightmare. I can't imagine trying to move. And of top of that to have to dispose of most things + disinfect/wash everything you bring with you.

I hope you can get help with this.

Anonymous said...

You might want to check out these sites for ME/CFS who recovered from mold and chemicals.

Sore throats -chills off and on
-sore throat (at night)
-swollen painful lymph nodes

Sounds like glandular fever. Prednisone works for me on the above conditions

For muscle spams bacfolen, Zanoflex, Methcarbomal.

For pain I take 1200mg of Generic Neurotin. It has to be from Greenstone manufacturer or otherwise it does not work with other generic drug mfg because of the binders and fillers in generics.

I would also check out neurologist as well.

Hope this helps.


Anonymous said...

Gosh this ME is terrible. Good Luck, my thoughts are with you

Anonymous said...

So, so sorry for you. It is difficult to move when you are feeling so lousy. I hope you have gotten out of that place and somewhere much more peaceful and healthy.

Congratulations on finding out the cause, you have already made great progress towards feeling better.

Pris said...

This is terrible news!!!