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.)

Fibromyalgia: Every Body System is Affected

"We believe there is a genetically defective kidney enzyme, which causes phosphate retention to accumulate to critical levels within cells. This interferes with energy formation, a substance called ATP, and to a malfunction in susceptible tissues. Excess phosphate induces calcium retention, and together they cause all of the manifestations of fibromyalgia.  Fibromyalgia would be more appropriately named Dysenergism to better describe the overwhelming fatigue and the metabolic disturbances throughout body tissues."    
~ Dr. St. Amand, practicing medical doctor in Los Angeles, CA who stumbled upon the reversal treatment for Fibryomyalgia/Chronic Fatigue Syndrome

For years, I've had one issue pop up after another.  I thought... it was just because I worked in an office environment in a sedentary job, I didn't exercise enough, I have 2, 3, 4 kids, I "do too much", I attend births in the wee hours of the night, I should have eaten more protein in pregnancy or hydrated better, it's pregnancy's fault, no, it is breastfeeding's fault.  I'm here to say, it sometimes takes us many years of suffering various conditions and recurring issues with a symptom big enough and painful enough to grab our attention, SHAKE US, and proclaim, "there is something really wrong with you!"

 No one wants to have anything medically wrong with them that is serious.  No one wants a terrifying, depressing diagnosis.  No one wants to suffer with chronic illness.  But, sadly, I do.  :(

As I'm writing this, my cousin on my mother's side of the family writes to tell me there are a few suffering with this condition in our family.  I suspected but didn't know anyone was diagnosed.  I'll have to get more info so I can understand my family history of this illness more.

For now, I'm going to attempt to remember (see the letter B above for why I say "attempt") all of my symptoms and issues to-date:

• Chronic fatigue
• Insomnia
• Restless legs and arms
• Muscle and joint pain in legs, arms, toes, fingers, back
• Feeling that I'm elderly and near death's door
• Anxiety, history of panic attacks
• Getting really hot but when I'm cold feeling super cold
• Chronic infections (yeast, mastitis, pneumonia, bronchitis, colds, stomach flu, etc...)
• Chronic low back pain before children
• Short-term memory loss (getting worse)
• Inability to focus and concentrate to finish a project efficiently or even a sensible conversation
• Post Partum Depression twice, other low points in life some caused by traumatic events
• Stress of being a busy mother of many, wife, running a household and finances, involved in organizations, work, studies
• Skin problems - new places popping up out of no where
• Low energy - hard to exercise when it makes me feel worse or exacerbates my low back issue
• Flu-like body symptoms following too much exertion like painting a room, day at Disney that takes 2 days to recover from the immense pain especially in my feet and legs
• Muscle weakness making daily activities hard like washing hair, brushing teeth, lifting baby, holding baby to breastfeed, changing the channel - the weight of the remote, typing, handwriting, knitting, driving - holding the wheel for long periods
• Digestively: stomach upset after eating, gas, bloating, nausea between meals
• Diagnosed in my mid-20s with Irritable Bowel Syndrome
• Diagnosed last month with dairy/egg allergy resolving a lifetime of constipation and regularity issues.
• Easily irritated due to the frustration of the above symptoms and any minor amount of stress
• Apathy at times feeling like giving up then determined at times to find a solution

Every part of my body feels dragged into this symptom nightmare.  In pregnancy with my fourth, I even had high blood pressure (from 90/60 to 130/80 with some bad days in the 140/90 to 148/101 range but thankfully not that last week), diagnosed with proteinuria using 24-hour urine test, diagnosed with hyperuricemia, had pitting edema, gained the most weight ever (so much was retained fluid!), and the metabolic panel showed changes but thankfully the liver enzymes though elevated were not outside of the normal range.  This all came to a head a few days before she just plopped out in one hour of labor making induction talk moot.

I refuse to give up searching for ways to reverse, eliminate, or lessen all of the above symptoms.

I want my life back.