Some Blood Tests are IN!! Good and Bad...

My test results are incomplete.  :(  One, they take weeks to come in, and two, the doctor I'm no longer with actually canceled my tests before they were finished so only partial results came in.  What does this mean?  Well, when my chronic illness brain fog self gets it in gear and gets an appointment with the new doctor, he'll have to redo most of these tests and I'll have to pay out the nose for them I'm sure as he uses a specific lab.  This could be more weeks of waiting, waiting, waiting...

Good news:  Lymes Tests - Dr. Burrascano (the Mold Doctor Exper) who recommends testing for Chronic Lymes using a bunch of IgG B.Burgdorferi test were all NEGATIVE!  This finally lays to rest that it is not Lymes or even Chronic Lymes which can go undetected with regular Lymes testing.  Woot!!

Bad news:  My VEGF result is low outside of the normal range.  

What is VEGF?  

Vascular Endothelial Growth Factor - Wiki it here.

Definition:  VEGF is a signal protein produced by cells that stimulates vasculogenesis and angiogenesis. It is part of the system that restores the oxygen supply to tissues when blood circulation is inadequate.  It's normal function creates new blood vessels during embryonic development, after injury, in muscles following exercise, and to create new vessels to bypass blocked vessels.  

Low VEGF causes muscle pain, fatigue and shortness of breath.  (I suffer from all of these off and on.)

Dr. Shoemaker, the expert in mold illness, states that a low VEGF inidicates inadequate oxygen delivery in the capillary beds.  In other words, there is a reduction of blood flow in the small blood vessels (called capillaries) throughout my body.  Having low VEGF like I do is one of the most common abnormalities he sees in chronic inflammatory response syndrome (CIRS) caused by exposure to water-damaged buildings.

This capillary hypoperfusion means that there is reduced blood flow in the smallest, most abundant blood vessels (and the tissues in the body they serve), which means a lack of normal oxygen delivery.  Restore normal perfusion and then watch as the devestating fatigue and all of its associated symptoms fade away. 

Normal blood flow in the tiniest of blood vessels is essential.  It is important to understand how our cells burn sugar.  The abnormal, inadequate delivery of oxygen leads to wasteful burning of limited cellular resources, including make-up energy sources like fat and protein - especially protein.  If there isn't enough oxygen in the cell, it only gets about 5% of the total available energy from sugar that it should while the other 95% is wasted with rising lactic acid which is a good measure of how little oxygen is being delivered.

My good days and bad days...remember those?

Well, I'll have a good day and get stuff done and then I'll have to rest for about 2 days to make up for the "good" day that I had energy and overdid it.  What constitute overdoing it?  Normal activities you do every day - showering, taking care of kids, cleaning around house, driving to places, working on a project, shopping, running errands, little things or big things with the big things draining me more for sure.  Well, when I burn up the small supply of glycogen I have, that's why I need two days to rest - my body is replenishing the glycogen used up.

Bad advice:  "Exercise more, Eat less"

For chronically ill patients like me, this is bad advice.  The more physical activity I do the more I hurt and the harder my body has to work to deliver oxygen to my starved tissues.  Eating less - well, I'm on a Gluten-free, Dairy-free, Egg-free, low-sugar diet as it is.  But my body needs more protein in order to have more back up for the sugar I deplete with just a few hours of an activity.

There's so much more to learn and so much more testing to be done.  I hope we have a treatment protocol soon.  I'm growing impatient, admittedly, but more than ever I really need these answers.

(Parts of this post are adapted from Dr. Shoemaker's book, Surviving Mold downloaded to my iPhone on iBooks.)

Carpal Tunnel Syndrome and Meralgia Paresthetica

Recently in July, my neurologist tenatively diagnosed me with Carpal Tunnel Syndrome (CTS) and Meralgia Paresthetica.

CTS causes numbness, pain and tingling in the fingers, hands, arms.  This began about 25 weeks of pregnancy and got progressively worst at the time of birth and continued for 6 weeks postpartum.  Today, I still feel weakness in my arms and pain in my arm muscles but not much tingling or numbness.  Losing 54 pounds in 7.5 months postpartum has greatly reduced the swelling that existed in my arms putting pressure on the median nerve in my wrist.  But another cause of CTS is relaxed muscle tissue.  As long as my body is filled with biotoxins, this muscle tissue will continue to be relaxed to the point of not being able to prevent pressure on that nerve.  Biotoxins must go!

Meralgia Paresthetica is a syndrome that comes from damage to the LCNT (Lateral Cutaneous Nerve of the Thigh).  The LCNT arises from the lumbar area specifically the L2 and L3 spinal nerves emerging from the border of the psoas muscle and the iliacus muscle deep to the iliacus fascia passing to the anterior superior iliac spine.  This condition can be cause by involvement in a motor vehicle accident like the one I was in 2 years ago as the seat belt is across this nerve over the hips.  Other causes or worsening conditions can also be caused by muscle weakness from Biotoxins!

My chiropractic history has revealed some definite low back pain!  More recently, after my accident I had pubic bone pain and hip pain for the first time in pregnancy.  I also had this pain only after the exposure to mold during mid-pregnancy.

My neurologist would love to do nerve conduction studies or electric shock tests but I'm gonna forego that for now.  I know I have pain in both areas of my body.  I accept his diagnosis.  The question is, would there be complete healing once Biotoxins are removed from my body?  Only time will tell us the answer once a final determination of which Biotoxins I'm suffering from is revealed and treatment is rendered.  But for now, I'll deal with the symptoms knowing that already both conditions have gotten better in the last week or so living out of my home, back in my remediated home and taking supplements like anti-inflammatories and probiotics, diet changes like gluten-free, low-sugar and being in a mold-free environment for the first time in years.

Treatment from a neurological stand-point would be with medication like steroids including shots or surgery neither of which I'm hoping for in the end.

My CTS and Meralgia Paresthetica will either disappear or need further treatment because too much damage has been done.  Stay tuned on these neurological conditions.

Dr Mary Short-Ray, Toxic Black Mold Syndrome Expert

Today I had a phone consultation with a wonderful D.O. who specializes in treating patients exposed to black mold and a combination of other issues.  She herself suffered from toxic black mold syndrome and shares her story.  If you read it, you'll find many of her symptoms are similar to mine. 

Dr Mary Short-Ray

She is trained in how to interpret my blood test results (she is also trained in Dr. Shoemaker's testing analysis) and asked me to send them to her when they get in.  Today I went online to Quest Labs and downloaded their Gazelle iPhone app that allows me to get my test results right to my phone!  So much for needing the rude, unprofessional doc I saw a few weeks ago to do it!  Dr. Mary said to just email her the results!  Cool!!

After reviewing my emailed timeline of symptoms including my history of IV antibiotics with the boys years ago and subsequent antibiotic usage, illnesses, infections, etc... She believes I also have Candida or Fungal Overgrowth in the Intestines.  She suggested I get my PCP to test for Candida - IgA, IgG and IgM.  I wonder if my PCP's test would be more reliable than the candida test my naturopath wants me to do.  Both are blood tests but one is a finger prick test and one is a blood draw.  I'll have to look into that.

Dr. Short-Ray said my newly found food allergies can be a direct result of Candida and leaky gut syndrome.  Wow.

She was thrilled we had already removed the mold from the house rather quickly upon its discovery by an expert and had some suggestions for treatment some of which she sells on her web site:

• Modifilan (a pure and natural nutritional supplement made from the brown seaweed, Laminaria Japonica. Extract of this seaweed contains the life essential properties of organic iodine, alginates, fucoidan and laminarin.  Detoxifies the body from toxins.)
• Zeolite (removes heavy metals and toxins)
• Limu Drink (a drink of brown seawood - sounds yummy) :)
• Grape Fruit Seed Extract (antifungal)
• Renew Life Fiber supplement
• Flax Seed Oil
• Drinking green veggie juices (more yumminess!!)

I have to look into the ingredients and make sure they are safe as I'm still breastfeeding.  I will follow up with my naturopath too and see what her thoughts are on all of these suggestions.

She also recommended more cleaning of curtains and bed linens with borax and replacing carpets if possible and having an air purifier.  

I look forward to having my results in a few days and more blood results in a few weeks.  Waiting truly is torture!

I really liked Dr. Short-Ray a lot and could tell she understood patients like me who suffer from conditions mainstream medical doctors really don't know what to do with but label and suggest drugs and surgery but are perplexed as to what the cause of "conditions" might be.  She found healing after her exposure and illness.  I hope I will, too.

Let's see if the blood tests confirm either mold exposure, candida or something else entirely.  Waiting...

Mold... What??!!

Where do I begin?  In the last few weeks, everything has changed, evolved and is making more sense than ever!  One night lying awake in the bed, I got an email from a doctor of osteopathy that I subscribe to, Dr. Mercola.  He spotlighted Dr. Shoemaker, the expert on Mold Exposure as a Biotoxin and Treatment.  He's written books like "Suriving Mold" and "Mold Warriors".  I've downloaded the former on my iBooks app and read through some here and there.  As I laid there, a thought came to my mind.  A memory.  A realization.  Could this be my underlying cause of all my health issues and what appears to be fibromyalgia and neurological conditions like Carpal Tunnel and Meralgia Paresthetica.  People don't just suddenly have a litany of diagnoses come up.  What is causing these health issues??  MOLD?

The memory was of last summer over Labor Day weekend 2011.  Austin and I cleaned out our basement and organized it and donated items, etc...  We threw out a lot of stuff too.  When done, I remember he was making trips to the landfill and Good Will as I swept up what I thought was only brown construction dirt left by the builders 8 years ago.  I remember seeing spots on items and cleaning them off with just a damp cloth and water.  I remember sweeping the blackish color on the floor from towels that were used to dry up a leak we've had issues with off and on for the last few years but could never find the source despite calling out a basement expert to try to figure it out.  I remember my nose dripping profusely while down there sweeping that last day.  I was 25 weeks pregnant at the time with Sara Beth.  I definitely remember feeling this water in my lungs feeling that night and for the next 12 hours.  I felt like I was drowning when I laid down flat in bed and had to sleep sitting up.  Eventually, it subsided.

Whoa!!  What if the spots, the leak for years, the respiratory difficulty was from mold?  When did my weird symptoms begin?  In my prenatal history at my 28 week midwife appointment on September 27th, I reported to my hospital midwife that I felt pain in my arms when typing or using the remote, I felt old and elderly like I was near death, I felt pressure in my eyes a lot, I felt general malaise, weakness and fatigue.  I had been having these symptoms for about 3 weeks.  Wait, 3 weeks?  The day I swept in the basement and had difficulty breathing was Sept 5th.  Oh, my Goodness!!!!!

I immediately contacted a local mold specialist (The Mold Doctor) and met the wonderful Tony who came and did an immediate mold test of our basement and upstairs where we sleep and our bathroom which about 2 years ago we knew had mold and when we had it painted had the mold removed and painted with mold resistant paint.  Tony took me around the basement.  He was wearing a respirator.  I was just breathing it all in.  He showed me mold on the duct tape on the duct system, mold around the A/C unit, mold in the carpet at the base of the stairs, mold on the drywall at the base of the stairs, mold growing on the basement ceiling underneath our Dining Room that is upstairs above the basement, mold on the insulation lining our walls which he refered to as "mold food", mold in our master bath on the door frame that wasn't painted with the mold-resistent paint, mold on our bathroom blinds, and I showed him the toys the kids used to play with that had black growing inside and he said throw them out!

What we thought were just water stains turned out to be mold from a leaky basement.

He also walked around the house and found mold growing on the side.  He did a mold test that Friday and the results came back on Monday. 

Types of mold found in the Basement:  Basidiospores, Cladosporium, Penicillium/Aspergillus, Smuts/Periconia/Myxomy, Pithomyces, Stachybotrys (the Black Toxic Mold!!)

Types of mold found in the Master Bedroom:  Alternaria, Ascospores, Basidiospores, Bipolaris/Drechslera, Cladosporium, Epicoccum, Penicillium/Aspergillus, Smuts/Periconia/Myxomy, Pithomyces

Elevated mold condition exists:  Yes.

Source:  Southeast Environmental Microbiology Laboratories, Inc.
506-A Laurens Rd
Greenville, SC 29607
Phone: (864) 233-3770 

We spent the next week working out the logistics of getting contractors in to do mold remediation and living somewhere else for 4 days.  The entire basement had all insulation removed, all drywall and carpet at the base of the stairs (other parts of basement were unfinished) removed, all pieces of any wood that was effected removed.  Then, they painted the entire basement with a mold resistant paint so now it is all white, all ceilings, walls, and even most of the floor.  They also discovered the source of the leak!  Perhaps, we never would have if the mold didn't exist.  When the removed parts of the plywood from the basement ceiling under our front door, they could literally put their fingers through a large crack that went outside underneath the brick front of our home.  It was never sealed.  We also had a leak in the front foyer window that was never sealed properly.  We sealed it some years ago but it too caused damage and the entire foyer window area had to be remediated and painted, too.  Mold, mold, mold and lots of damage done but now it is all fixed.

You can see where the contractor had to pull back the plywood once covering this surface completely.  The sunlight is under the brick front leading out to the front of the house under our front door.  This is where the leak came from.  :(

This process was mentally exhausting and hard to digest.  How did we not know?  Well, for starters the basement isn't used but for storage so we didn't go down there much throughout the year and then there is our very busy life with the kids and work that kept us from focusing on it more seriously when we should have believing what we did see were just water stains from the leak.

Tony also said our humidity in the basement was 57%.  This is high because that was on a dry day.  All it would take is rain falling to cause it to go above 60% and that's when mold starts to grow.  So when the big rainfalls caused the basement to leak, it was well above 60% and mold grew rampantly.

We had to remove all of our belongings from the basement and check them for mold.  Any mold growth on fabric was discarded in plastic bags, any mold growth on a cleanable surface was cleaned with a mold surface cleaner we picked up from Home Depot.  We bought the respirators, suits, gloves, goggles.  Austin looked like a typical contractor suited up to remove a serious toxin.  It took us all weekend to do it.  We have what is safe to still use in our garage now.  We'll have to bring it back to the basement now and reorganize everything.

We also hired duct cleaners to clean out all of the ducts in the house.  This gives us more peace of mind and is recommended when doing mold remediation. 

We had the outside siding powerwashed to remove the mold growing on the siding and the contractor sealed the crack under the brick front.  We just had a nasty storm a few days ago and no leak.  We hope that will continue to be the case.  Until we know for sure it is the source, we aren't going to finish the basement anytime soon. 

We still can't believe this.  I think of few times I exercised down in the basement (and while pregnant!! and worse took the baby down there to sit in her bouncy chair!!!!).  We never really let the kids go down in the basement so that is good and no visitors to our home were in the basement for long periods of time because it wasn't finished except the carpeted stairs going down to the basement, so that made me feel a lot better, too.  But the fact it was in parts of the house, too, is very disturbing.  I started doing research on children exposed to mold and what the side effects could be and had to stop.  First, I've got to take care of me and figure out if that is indeed what my "biotoxin" is.

I saw a doctor who specializes in this area and trained with Dr. Shoemaker above but I won't be returning to their practice.  They are not professional or nice.  But when I did see her, she did the VCS Aptitude Test which tests for neurotoxins doing a visual test.  I failed it.  She ordered the 14 vials of bloodwork and some might be back now but I'm in the process of finding a better fit doctor for me who is like all of my other doctors - caring, sensitive, professional and wonderful to work with.  I have a consultation with a doctor today who also specializes in this area and who has been a victim of mold exposure and its effects herself.

A well depicted summary of my last year only leaving out the pain/fatigue/brain fog, etc...

I will update when I have blood test results back.  But please know this, everyone....  mold is toxic and harmful.  Especially, black toxic mold - stachybotrys.  Take leaks seriously.  You can have a beautiful new home like we do and be a victim to it.  You can have it hiding for years behind your walls.  If you sense a water problem or see stains, please have them checked out sooner rather than later.


Introducing Dr. Shoemaker...

YouTube video - Biotoxin 101:  Part 1 (Mold, CFIDS, and Fibro Treatments)
http://www.youtube.com/watch?v=ULJLAExjEDk