Friday, October 10, 2008

Leaving tomorrow!!

Tomorrow is the big day!  I am so excited!

My goofy kids are not looking forward to my being gone for three whole weeks .... neither is Mr. Sixgoofy!  It's not that I'm looking forward to going or am excited to leave, it's that I'm excited to be well ... okay, I'll be honest, I'm excited to spend three weeks in another country, too.  

I have most likely had Lyme for 35 years.  I have a great immune system so was healthy most of the time though I had random symptoms for as long as I can remember.  I was disabled by the illness in 1982, 1986, and 1991.

Through my healthy years I would have weird issues .... like in the fall my shoulders would ache.  I thought I was just in bad shape and the heavy sweaters caused pain.  I would have terrible fatigue and wondered why everyone else wasn't as tired as me.  They were all problems that could be considered somewhat normal.

Then in 1982 when I was in college, I was so tired all the time that I just got up for class.  My roommate was very worried and took me to the emergency room where the doctor told me not to drink so much alcohol.  This lasted several months, then self-resolved with a lot of rest, exercise and sunshine.  Ironically, I had terrible insomnia despite the debilitating fatigue.

A repeat happened in 1986.  

In 1991, all of a sudden one day I had severe abdominal pain.  My sister and her husband were visiting during spring break (they were college students) and we were at the Children's Museum.  I had to go sit down for a while ... then I told them I needed to go home.  The pains were so severe I couldn't even drive.  By that night I was at the emergency room, but the doctors could find no problem with me.  They gave me IV fluids to help my low blood pressure, then released me.  

Six months later I was still experiencing extreme fatigue, but my doctor could find nothing wrong.  I was seeing a mercury free dentist ( and he told me about the possibility of mercury being at the root of my health problems.  I had my amalgam fillings removed and replaced with white fillings.  I had flu-like symptoms after the removal and took many supplements to help remove the metals from my system.  After this my symptoms resolved for 12 years.

I would have flare ups during pregnancy but other than that was very healthy and energetic.  People would ask how I did all that I did.  I ate a good diet, exercised, and took supplements.

About five years ago, I became very ill with what we suspect may have been psittacosis (I had all the symptoms, and the bird that died did, too).  I took 21 days worth of doxycycline at 300 mg. per day.  I had severe breathing issues, pain across my back, extreme fatigue, extreme weakness, fever, etc.   After the 21 days, I still felt bad, though the respiratory part of the illness had gone except for shortness of breath.  The shortness of breath would get so bad I would hyperventilate.

I slowly started working out again, got a lot of rest, ate right, and tried to get better.  We moved, and when we were moving our bed, we discovered it was full of mold.  We got a new bed, and I started getting better.  A short time later my knee started hurting so badly I had trouble bending it.  Stairs were difficult, and when I sat I had to keep it out straight.

I eventually went to the doctor for the air hunger and tested negative for asthma.  The doctor said I was just hyperventilating like it was no big deal.

More symptoms started coming up, symptoms that all seemed unrelated.  One of the more severe were GI problems.  I all of a sudden dropped 15 pounds in three months.  I had constant, severe diarrhea ... also stomach pains when I ate.  I eventually became weak and fatigued.

I had testing done for celiac disease.  The tests were negative, but I found that I felt better on the gluten-free diet so ate 100% gluten free for two years.  I continued to have symptoms and continued to get worse .... I eventually cut out other foods, but it didn't help.

My doctor diagnosed me with Somatization Disorder, so I started researching on my own to figure out what I really had.  I can't really blame her entirely for the psych diagnosis .... the symptoms are even incredible to me!  

Here's the list -  fatigue, night sweats, air hunger, heart palpitations, diarrhea, lack of appetite, weight loss, disorientation, mental confusion, getting lost driving, trouble reading, trouble writing, trouble talking, word recall problems, trouble falling asleep, trouble staying asleep, rashes, hair loss, bruising, TMJ disorder, weakness, joint pain, muscle aches, ringing in the ears, food intolerances, floaters in eyes, light sensitivity, sound sensitivity, touch sensitivity, mood swings, rage, rib pain, allergies, alcohol intolerance, etc.

Eventually through my research I discovered Lyme Disease.  I sent away for a test kit from IGeneX labs ( and took the kit to my doctor so she could run the test.  The test came back with 8 positive IgG bands.  She told me that I previously had Lyme but that now it was Somatization Disorder.

I went to an LLMD (lyme-literate MD) in NY for treatment.  He's a wonderful doctor and has gotten me on my feet again.  I have good days and bad days, but many of my symptoms have resolved.  What remains is fatigue, air hunger, insomnia, fibromyalgia pain, and GI distress.

Recently, I heard about a treatment by a doctor in Germany with an instrument called the Bionic 880.  Its a new technology using infrared light.  There have been promising studies done on it's use with cancer and Parkinson's patients.  The doctor who treats Lyme claims higher than a 90% success rate, so I thought that I'd rather spend the money to give it a try and find out that it does not work rather than wait and find out it does.

ILADS treatment ( is the best we have right now, but it's not a cure, the most we can hope for is remission.  I am hoping for better and am willing to give something new a try. 

Recently I discovered our new (now five year old) bed also has mold.  It seems that the mold exposure has been a big trigger for my Lyme symptoms and I have had trouble with the mold detoxification since we got rid of the bed.  I am hoping that the Bionic 880 treatment will help with the mold detox as well as with the Lyme.

Thanks for reading, I can't wait to tell you about my experience in Germany! 


shandym said...

you know what is co cool about this message.. It was posted at 11:11 and I think that is a good omen!! Good Luck Carla!! :)

april said...

Hi Carla! I didn't know you had 2 experiences with beds having mold! That is such bad luck.

I can't wait to hear more about the trip. I am wondering if this machine is useful with alzheimers?


An Educated Patient said...

good luck carla!

i hope you come back all better!!!!!!

11:11, that is wierd- that is when i have my appt, 11/11.

best wishes,
aka nyjohn

mojojojo said...

nyjohn...that's definitely a good sign. 11:11 kills bugs and brings patients back to life!

six--I am following you like a sick e-puppy... that will soon be a real puppy. Look forward to your soap box adventures! said...

glad to see you are ok over there. hope this ends up helping you a lot. if it does for you and scott and others, ill be in the next group. cheers! derek

Ann said...

Sixgoofy and Paul. Did Dr. W say anything about either of you having bartonella? I have bart as well as lyme and I am wondering if I can finally get rid of my myoclonic seizures with Dr. W. Also, would you please ask him when they will take new appointments for summer. When is the earliest I can call? Thanks. Hiker53

charlotte said...

how did you know your bed had mold? It's odd this happened twice. Is yr climate humid, damp?
Just curious. Wondering how I would figure out if I had mold in my home.