My Big Fat Overdue Update

This is a LOOOOOOONG overdue update, but I’ve been completely overwhelmed with finding a replacement car, administering/understanding new treatments, rotation diet planning, and home improvement. In the interest of attempting to over simplify an overwhelming quantity of information, I’ve decided to break everything down in sections.  Bless you all for reading & trying to keep up w/ me!  Thank you SO much for checking in.  My apologies to those I haven’t directly responded to.  I have just had my hands in so many different pots that I have really let the blog slide.  All for a good purpose, of course. :o)

Car Replacement: After my “safe,” well aged (off gassed), non-perfumy car was totaled in the storm while we were in Dallas, we had to rent a car to drive home.  A sweet friend was kind enough to ship me her high powered ozone machine to minimize the damage.  It helped . . . some.  However, a ten hour drive in a new, off gassing vehicle, is going to take its toll.  I made it about six hours before I started to pray for death. (LOL!)  After much research, I’m pleased to report that we’ve found a lovely replacement vehicle.  It’s a beautiful six year old Lincoln and it stinks to high hell.  This car was detailed so meticulously that it actually now has a very good recreation of the “new car” smell.  Lovely.  So why did we buy it?  Because we gave up the search for a scent free car & the price was right.  Scent free or mostly scent free cars just don’t exist.  If it’s not cleaning agents, it’s perfume; if it’s not perfume, it’s cigarettes.  So we will keep working on this car w/ our ozone machine and eventually it will be tolerable for me.  There IS an upside to all of this . . . My husband has been working very hard on my minivan to make it acceptable to me and he has made great progress.  I can now be in it for approximately 40-45 minutes w/out horrible reactions.  I’m THRILLED!!! 

Pets: Our furry feline friends are gone.  A dear family member has given them a home.  My children have very mixed emotions about this and frankly, I do too.  Mostly seeing their tears of longing for their pets keeps the wound still there.  But on a regular basis, we all seem to do pretty well. Honestly though, I’ve noticed a slight improvement by not having them in the home.  Their hair and dander is still everywhere, but we are very gradually reducing it.  Any tips on residual pet hair removal? I’m all ears.

Treatments: Upon completion of all my testing at the Environmental Health Center in Dallas, I am now armed with several treatments.  Currently I have about twenty vials of various antigens for foods, molds, mycotoxins, chemical, hormones and candida. Though in total, I’m actually being treated with 50+ different antigens because most vials contain more than one food, mold, etc.  Additionally, I am now also armed with an immune boosting vial created specifically for me.  This vial is actually considered a vaccine and it is called Autogenous Lymphocytic Factor (ALF).  This vaccine is created from my own blood.  It is designed to establish my own personal immunological blueprint.  This blueprint will contain specific antigens that are only found in my cells.  When these cells, called lymphocytes, are placed in a cell culture, the weak die and the healthy grow robust.  In 2-4 weeks, many extremely healthy cells exist.  Upon completion of this process, the ALF vaccine is made.  The hope is that ALF may assist my immune system to lessen hypersensitivity and allergic reactions.  It can boost my immunological response to pathogens.  It doesn’t work for everyone, but many patients with hypersensitivities to foods, chemicals, molds, etc. have been helped by ALF.  Some find relief right away, but often times it can take months. All of the above vials (injections) are rotated every four days, so I only have to poke myself about five times/day.  Typically most patients need to be treated consistently with these antigens, and immune booster, for 18 months before full results are achieved.  Everyone is different.  Some of them may need to be a part of my daily life for years.

Furthermore, I am also being treated with IgG therapy with a product called Gammagard.  Gammagard is a subcutaneous infusion that I receive once/week in my home.  Initially a home health nurse administered this medication to me, but after some training my “quick study” husband is now able to administer it.  This medication can be given intravenously, but the form I receive is a subcutaneous infusion that takes about an hour.  (May I just pause here and say: “Thank GOD my husband doesn’t have to poke my tiny veins!”  Needles don’t bother me all that much, but the one exception is an IV.  My veins just don’t cooperate with them.)  Back to Gammagard.  Gammagard is a treatment created to replace missing antibodies, also called immunoglobulins (Ig). Naturally occurring antibodies protect the body against infections by attaching themselves to invading germs (pathogens). This makes it easier for other immune system cells to locate and destroy the germs. Since there are different types of germs, there are different types of antibodies that bind to specific germs. One type is immunoglobulin G (IgG) antibodies. IgG antibodies are formed in large amounts and work in the blood and body tissues to fight germs. (Totally stole that off their website – so there ya go, credit where credit is due).  This treatment is, in my words, pretty “hard core.”  Those recovering from long battles with cancer have received this treatment.   The rate for allergic reaction and side effects is relatively high, so I met my first infusion with great excitement as well as trepidation.  The first two treatments didn’t go so well, but I’m pleased to report that I’m doing much better w/ subsequent instillations.  My fifth treatment was yesterday, 7/30/12,  and I did really well with it.  My treatments are scheduled to continue for a full twelve weeks. At the end of twelve weeks, my t-cell counts will be re-checked to see if my immune system is responding favorably.  As a side note, this is a blood product, so a very kind thank you to all of you who donate blood. 

Rotation Diet: Part of healing also includes dietary modifications.  I wasn’t really eating anything but fresh, home cooked, bland food anyway, and my options were quite limited due to my corn allergy.  Technically, I could say things have gotten worse because I’ve since discovered many more food allergies through testing, but knowledge really is power.  At least I now know that some of my reactions were actually to that specific food or food family and not solely due to corn cross-contamination.  So some foods have been closed to me, while a few others have been opened due to the corn antigen.  Every food I eat is a whole food.  I cannot eat any recipes and here is why: Because I tested positive to a very large number of foods including all nuts, grains (except white rice), various vegetables, a few fruits and several animals (meat), this limited the number of foods I could rotate.  I currently have about 24 foods I safely do not react to.  Unfortunately a few of those are oils and things like lettuce, which aren’t very filling.  (My options WILL expand as I continue to heal.) The rotation diet is done on a four day basis and it’s HARD.  Obviously it means I can only eat a particular food once every four days, but it goes beyond that.  I also have to rotate foods by trying not to eat foods from the same family in one day, as well as only eat from that food family every other day,  rotate oils AND I can only eat one food once/ day (no snacking on it – when I’m done, I’m done).  Example of how this works: Mon. – black beans, Wed. – cannellini beans (no legumes allowed on Tues.)  Another example: Tues. – chicken (can’t eat chicken again until Sun. Thurs. – eggs (can’t eat eggs on Wed. b/c they’re in the same food family as chicken)  It’s insane.  I spent 90% of my time in the kitchen.  Honestly, I’m not perfect w/ this diet, but when you only weigh about 100lbs and have 24 foods to rotate through, perfection may not be the ultimate goal.  So, what exactly is the reason behind this insanity?  The objective is to keep the non-reactive  foods safe.  Food antibodies take four days to clear your body and by rotating on a four day cycle my body doesn’t have the opportunity to develop allergies to these precious safe foods.  This is also the basis of treating with the allergy shots on a four day rotation as this ensures that the body is remains neutralized to the allergies being treated.  When I’m able to reintroduce foods for which I have been treated, they will be reintroduced using this strategy.  

Home detox: Wha-wha-what!?  She’s detoxing her house?  Is it on drugs!?  HA!  Wellll, in a way it kind of is.  When I was initially diagnosed with a corn allergy, we started going on a rampage to “de-corn” the house.  Corn is in everything, so my feelings were that we should just throw everything away and start over.  My mentality on this is slightly altered from before.  My new goal is to have a less toxic home overall.  Currently I am on an antigen for corn and I do believe it’s helping.  Am I going to dive into a bowl of popcorn or even allow it to be popped in my kitchen – hardly, but the minute amounts of it (like vegetable washes, trace cross-contamination, etc.) are becoming less of an issue.  As a part of my treatment, Dr. Rea explained that I need to reduce my overall toxic load.  The most logical place to start is the bedroom I sleep in.  From there, we tackle cleaning and eliminating the many offenders in the rest of the home.  As I am typing this, we are having new tile installed in our master bath/bedroom.  If this goes well, not only will I have a lovely new floor in my bedroom, but I might actually be able to go in my bathroom & closet again!  I did say “if” because this is a gamble.  We’re gambling that I will be able to tolerate the smell of the thinset, fresh grout and tiny amounts of formaldehyde & other chemicals that will be released from it.  Formaldehyde, as you know, is in practically everything.  It is a huge concern for the environmentally ill (chemically sensitive). The chemical smells coming from there are pretty intense for me.  While I’m very excited about this new possibility, my husband and I are concerned that I may be sleeping on the couch for a while.  Sometime this weekend, I should know if I will be able to go back into my own room.  (fingers crossed)

At the end of the day, I still remain optimistic that much improved health is in my future.  Our family is already starting to see little glimmers of hope and improvement.  I continue to work very hard & my husband  remains continually devoted and works his tail to the bone for me.  Our family and friends are doing anything they can and many who don’t even personally know me are keeping me in their prayers.  My faith in God to see me through this has turned into an awesome, unwavering faith that even surprises me, but it’s there.  God is ALWAYS with me.  I will be okay.