A Month Later... Has Removing Mold from our Home Helped?

It only took 1 1/2 weeks after moving back into our home for the pain that I had shooting through my body in my muscles or nerve pain to nearly completely go away.  I suffered all day every day.  Amazingly, I rarely have this pain today.  It is a true testament that mold exposure illness does exist and it can wreak havoc on our bodies!

Over the last month (despite being in the first trimester of pregnancy), I have noticed my energy level has improved.  I've gotten so much done around my home, in my business, with my kids, running our family...  I've caught up with things I was greatly behind on.  The mental fog I had and debilitating pain and sluggish energy daily wore on me.  I couldn't get anything done.  Didn't want to.  Didn't even care after awhile.  Now I care again!  Now I'm motivated!!  I feel happier, more peaceful and hopeful. 

When you feel like what you imagine is like living an elderly life where you are days or weeks from death, you have a deep appreciation for wellness!!!

I've been able to not only focus on myself, my new pregnancy including lining up a new team for prenatal care this time (a wonderful perinatologist and midwife that work together at a local hospital), but I can now also focus more on my children's health and how this biotoxin and mold exposure has possibly affected them.

My oldest son is 7 and has been exposured since the age of 4 or 5 years old.  He has developed a focus/attention/concentration issue which is prevalent in children exposed to toxins.

My next son is now 6 and has been exposed since the age of 3 or 4 years old.  He has a bit of an obstinate streak (gets it honest) but has been emotionally more extreme in his reactions to things which we thought would improve with age but has yet to do so.

My daughter who is 3 years old seems fairly normal for her age as far as my parent analysis goes but does have persistent swollen glands in her neck which I'm not content with.  I want her to be evaluated to rule out anything concerning causing these or anything I haven't myself observed.

My baby girl is 9 months old now.  She is at least 3 months behind in developing teeth for our family.  All 3 of the others got teeth in at 6 months.  She has no sign of teeth.  She's also delayed in talking.  She doesn't making any syllabols at all but what makes me feel good is that she can mimic sounds we make (not syllabols) and she has very well developed and early gross motor skills - early to crawl, stand and walk holding onto things.

I've been looking for a doctor who specializes in mold exposure illness, who understand what we are going through, who does Dr. Shoemaker's extensive genetic and mold illness diagnosing tests, who takes our insurance or at least can help us file for insurance reimbursement (a biggie for us right now!), who will see the entire family in one day for initial evaluation and blood work, and is within 1ish hours of our home. 

I believe I found someone!  A doctor in Gaithersburg!  Dr. Alan R. Vinitsky is a medical doctor, an internist and pediatrician who specializes in environmental medicine.  Who treats autonomic nervous system dysfunction which comes from exposure to toxins like mold.  He's written books, articles, given lectures, workshops, severed on boards, etc...  He seems extremely experienced in this area in which we are in need of evaluation, diagnosis and treatment.  He "gets it".  So many doctors don't fully understand that people like me who are sick are very sensitive to light, sound, chemicals, perfumes, fragrances, and that their allergies like food/cat, etc... become worse with mold exposure illness.  He understands all of this and doesn't allow his staff or other patients to wear scented products.  :) 

Dr. V.

His testing includes: 

• Autonomic Nervous System Testing.

• Visual Contrast Sensitivity (screening for neurotoxicity).

• ELISA/ACT testing for non-IgE mechanisms of sensitivity to foods and substances.

• Skin testing to evaluate and treat food and other sensitivities (perfumes, fragrances, tobacco, cats, etc.)

• Comprehensive Digestive Stool analysis with Parasitology - evaluates digestive function, dysbiosis, inflammation, and parasites of the GI tract.

• Metal testing - heavy metals, nutritional minerals, and challenge for metal elimination.

• Organic Acids, Amino Acids, Essential Fatty Acids and minerals for nutritional and metabolic analysis.

• Porphyrins, Histamine, Zinc, Copper, Magnesium,Vitamin B6,  Folate, B12, to identify nutritional causes for depression.

• HLA DR genetic markers for Mold Toxins, ANA, immunologic markers,    TNF- a, lymphocyte distributions, natural killer cells, titers for toxoplasmosis, EBV, CMV, HHV-6, Lyme, Babesia, Ehrlichia, Anaplasma.

• Carbon monoxide, venous and arterial blood gases.

• Identification of pesticides, Volatile organic chemicals (aromatic and aliphatic), herbicides.

• Hormonal Evaluation - including Adrenal, Thyroid, Ovary (or Testis), Pituitary, by blood, saliva, urine, or all 3.

• Pulmonary Function Testing.

• EKG

• Other testing as indicated based on above results

Note many of these tests are those Dr. Shoemaker uses to diagnose mold exposure illness!  

I'm really hopeful this is the doctor for me and for my family!  He seems on paper perfect!  I'll update after I set up a consultation and get to check him and his staff out!  Maybe this will help our family to change everything!

Mold exposure illness is serious.  If you live or work in a water damaged home/building, please consider removing yourself or getting your toxic home/building remediated asap!  You don't want to go through what our family is still going through.

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.)

Questions, Questions, Questions...Answers Cannot Come Fast Enough!

OK let's start by laying out what we already know...

1) I'm not well.  My litany of symptoms makes this all very frustrating and confusing.
2) Inflammation is very much present in my body in multiple systems
3) I was found to be Vitamin D deficient in March 2012
4) I've been diagnosed with food allergies in late May 2012 - dairy/egg
5) I was recently diagnosed with two neurological conditions (both caused by inflammation in the body irritating nerves) although I am confident this neurologist is missing the mark - neither of the conditions he believes are my issue lead to either pain in the lower extremities past the thigh or memory/focus issues, so although he may be correct those nerves he diagnosed are affected, they are not the only problems. 

Now where to go from here...

1) I'm very well read on Fibromyalgia.  To-date it is the one condition I've extensively researched that seems to match all of my symptoms I suffer with daily.  But what is next if FM is my true diagnosis?

• I need to find a practitioner to do the body mapping to confirm FM and have a starting point.
• I would go on Dr. St. Amand's guafenisen protocol to reverse the symptoms of FM

 2) My naturopath is testing for candida at my next appointment end of July to see if this is a major factor.  I do have regular issues with yeast.

3) I'm going to make an appointment with an LLDM (Lymes Literate Medical Doctor) who can definitively rule this out.  So far, I've tested negative for Lymes in the April 2012 including the Western Blot test.  When I got an email from someone who was in my Guai Support Group that had undetected Lymes not FM, I decided to follow-up on my negative tests because they could have been wrong.  Dr. Burrascano's list of Lymes symptoms is extensive and also match my litany of symptoms. 

Visit www.LymeNet.org  and  www.ChronicLymeDisease.com for more info.

4) Neurological:  I will do the nerve conduction studies with my neurologist.  I'll also find a neurologist at Hopkins or surgeon if needed at Union Memorial for further evaluation, testing and possible surgical fixes if time will not heal these issues.  I still believe if I find the underlying cause of my inflammation taking over multiple systems, then the inflammation causing these nerve pains will disappear, hopefully.

My goals...

I hope to get better within the next 12 months.  No matter the ending diagnoses, I want to find the best, healthiest and most long-term healing and treatment plans possible.  I'm in pain every single day.  All day long.  I live with it.  I type now through the pain radiating in my hands.  I try to make sense in these blog posts despite my sharp mind fading in focus, concentration and memory.  My house is suffering because I have a hard time doing any physical work.  I want to exercise but I hurt my back severely whenever I attempt it.  I want to have energy not fatigue.  I have four kids to raise and want to have more.  I have a life to live.  I can't live it like this.  This is taking over my life.  It's slowing down my success as a mother, wife, household manager, childbirth educator, doula, midwifery student, etc...  I will not allow this to go on.
I will find MY cure.