Monday 4 June 2012

Two Week Progress Report

We have been in Dallas for a couple of weeks now, but time is passing by rather quickly.  I spend 9:00 a.m.-4:30/5:00 p.m. M-F at the clinic for testing and doctor’s apts.  Sometimes I test on Sat. mornings as well. (Did I mention cell phones and all electronic devices are strictly prohibited in the office? It’s actually kind of peaceful, but it does cut down on my “social” time with friends back home.) Dr. Rea had a speaking engagement in Spain this past week, so I was primarily testing and met once with Dr. Sprague, the doctor who filled in during his absence.  We still have a lot of questions for Dr. Rea at my appointment this week, but this is what we know so far:

Molds, Mycotoxins & Candida – I continue to skin test high for every single mold and mycotoxin.  Mycotoxins are toxic chemical products produced by fungi. They can be found naturally in a variety of foods & products including cotton, mushroom, peanuts, other tree nuts, spices, corn, etc.  It’s extremely difficult to comprehend the vast reach of mycotoxins, as I am not a microbiologist, but I do know this much: One mold can produce many mycotoxins and they believe I have had a recent mold exposure.  Therefore, I will have issues with both.  We now realize that my newly developed mold allergy is potentially as big as my corn allergy.  I can’t really believe I just said that.  I also tested positive for candida allergy.  Candida is a type of yeast that occurs naturally in the human body. Normally it lives in harmony with a variety of other microorganisms and actually performs a couple important functions.  The problem occurs when something upsets the balance of bacteria in the body and this allows the yeast organism to proliferate and take over all the healthy microorganisms.

Immune System  – My immune system has likely been compromised due to a variety of issues, which include genetics, molds, chemical exposure, antibiotic usage and a host of things I will never fully realize.  My blood test results for my t-cells revealed low helper t-cells and low suppressor t-cells.  I’m not entirely sure what all of that equates to, but I do know low helper cells can be attributed to hypersentivity, allergies, inflammation, etc.  Low levels of both helper and suppressor cells are often related to autoimmune disorders.  I plan to ask my doctor more about what these numbers specifically mean for me.  A secondary delayed immune test revealed that my body produced absolutely no cell mediated immunity when skin tested with seven standardized recall antigens.

Other food allergies – It is very common for someone with an autoimmune disorder and extreme allergy to one food to also test positive to a whole host of other foods.  I will spare everyone the details, but I have a pretty long list of foods that I am unable to eat right now.  The reason my food testing takes so long is because each food is tested individually.  Due to my delicate immune system, they are hoping to find at least 25 completely non-reactive foods for me to eat.  We finally started making some good progress with this last Thur. after several days with many reactions.  The downside (for me), is that I only have one safe protein at this point and it’s chicken.  (Do you know how hard it is to find a non-corn fed chicken!?)  The goal is for me to eat my safe foods on a four day rotation to keep me from developing further food allergies.  Repeatedly eating the same food day after day can actually increase ANYONE’S odds of developing a new food allergy (cough, cough, healthy friends . . . just sayin’).  Some of my low level response foods might be able to be slowly added back into my diet in approximately six weeks. 

Pet allergy – Unfortunately, in addition to developing new food allergies, I have also developed an allergy to my two fur children.  Our two cats will need to be removed from our home until my body is strong enough to attempt to reintroduce them.  Dr. Rea didn’t exactly spare my feelings when he told me the cats needed to be evicted immediately.  He won’t even discuss re-entry at this point.  His goal is to get me healthy and I really have to comply. My two human children recently learned about my new allergy and they were quite upset.  It hurts.  On the upside, a very kind family member, who lives about 100 miles from us, has offered to take them so my children will be able to visit them about once a month. :o) (Oh ya, I’m also allergic to dogs, but not as bad. Booooo, hissssss! I like dogs too!)

Minerals and metals – As suspected, my iron levels came back low.  Quite low, actually.  I already knew I was deficient because I know my body really well.  The downside is that I have been unable to find a supplement that did not contain corn.  We’re still looking.  One option, to get things started, might be to try intravenous iron therapy.  Again, the search for safe supplements is daunting.  I’m hoping that within a few months on my corn antigen (allergy shot), I will be able to tolerate a few supplements that contain derivatives of corn. My hair elements analysis revealed high levels of mercury in my system, though the level reported was consistent with someone who has amalgam fillings, which I do.  My homeopath had already recommended removal of my fillings by a dentist who is qualified in safe amalgam removal.  Many have reported positive impact in their health as a result of removal.  Sadly, my body is not strong enough to endure the process at this point.  Dr. Rea will guide us in determining when he feels my body is ready.  The best estimate we have right now is three to six months, but realistically it could be a year or more. 

The good news – Yes, there is good news.  :o)  I’m not the sickest person who has walked through those doors.  Sure, I still have to wear a mask and even that isn’t enough on most days.  “Stinky” people walk in the doors of the EHC and send me reeling, but sometimes I’m able to recover and continue on with my test.  (Everyone who enters the center is supposed to be scent free, but this doesn’t always happen.) Other times, my testing has to be stopped and I go home (errr, back to the hotel).  Now for the really good news: There are things I can do to climb back to a place of health and social normalcy.  The process will take a long time, but where there is the healing hand of God, dogged determination and the support and prayers of many - THERE IS A WAY back. 

The game plan – I’ll try to keep this brief, as it is quite exhaustive and obviously still a work in progress.  We obviously need to desensitize me to my nemesis, thus I’ve already started my daily injection of corn antigen.  A couple of night’s ago, I had a pretty bad reaction to the injection, but my husband believes it is because I accidently injected a vein and/or muscle, as opposed to fatty tissue.  (What can I say, there isn’t a lot of fat to work with right now. LOL!)  I was very concerned after my night of hell because end points for antigen levels can change over time.  Changing end points are not uncommon. We may retest my corn allergy again just before we go home to be absolutely sure it is at the right level. In addition to corn, I am in the process of determining which 10 allergenic foods I would like to add to a separate antigen, so I can eventually start to build more things into my diet.  A customized antigen for the molds and mycotoxins I am allergic to is also being created.  I can start on that before we leave and take it home with me.  Additionally, a customized vaccine called Autogenous Lymphcytic Factor (ALF) is also being created with my own t-lymphocytes.  It takes approximately six weeks to grow, so I won’t start on it until after we leave.  This vaccine is helpful in treating severe sensitivities and immune dysregulation.  It has about 85% efficacy rate, though results can take up to six months to even a year to be fully realized.  Later this week, I will also give the sauna a try.  After being poked in the arm 20 times/day (LITERALLY!), I think this sounds like a nice change of pace.  Sauna detox can be a very beneficial part of the process, but it’s something I can’t overdue because essential vitamins, minerals and electrolytes will also be “dumped” from my body along with the chemicals in my fatty tissue.  If it goes well, then we may invest in a home sauna.  Many patients have reported great success and have also purchased their own home sauna. 

In addition to the aforementioned remedies, my husband and I (okay, mostly my husband), will need to do some major renovation and removal work in our own home.  All of our carpet must be removed & replaced with tile, mold testing must occur, and heavy duty water filters or a whole home system must also be installed.  Creating a less toxic environment doesn’t come cheap, but we will do whatever it takes.  Some people have had to leave their homes altogether and unfortunately couldn’t return.  The little apartment we’re staying in is owned by the EHC and is designed to elicit minimal toxic impact.  Some people are actually living in the complex because they have no place else to go.  Environmental illness has a HUGE impact on an individual’s life.  At the end of the day, I feel very blessed to have the support of friends and family members who are helping to keep me alive.  Not everyone has such support. 

So that’s about it for now!  Thank you for reading & thank you for your prayers & kind words.

9 comments:

  1. Things are sounding positive. Maybe it's a twisted sort of positive ;-), but I still see it as a positive. Things are happening that will hopefully allow you to have a more full life! One of the most important lessons I've learned on my own journey is how powerful of a force Hope is. It sounds like, from your blog post, that you are feeling more hopeful than you have in quite a while. Thank you for posting an update -- I'd been thinking about you over the weekend =).

    Glenda

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    1. Thanks, girl! My updates will be pretty sparce, but I'm trying to get them in when I'm able. How are things w/ you?

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  2. I'm glad to hear that they're making progress toward identifying the problem and are giving you so many answers! I was interested to know that eating the same foods day after day can increase the chance for an allergy. Definately something I'll be avoiding with our family ~ thanks! Ann

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    1. Thanks, Ann. Is this the Ann I know in real life w/ two kiddos, who is a FB friend? Just curious. LOL! Ya, when I start to get better, I'm going to try to do a better job of sharing educational info. w/ friends, fam & blog followers. :o)

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  3. I'm really glad you are posting this. I've been wondering about trying to see Dr. Rea, but had no idea how it would work. Your post is very helpful. You talk as if they don't have any doubts that you can't tolerate corn derivatives and are working to fix the problem. Are they really that matter-of-fact about the whole controversial corn protein issue that all other doctors don't get?

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  4. I'll be praying this works and works quickly for you! I just read Erica's post today (7/27) which lead me here. I'm allergic to corn, but mostly ingested and contact, and less so to airborne. My 6.5yo is very corn light and has a longer list of things he has varying reactions to, gluten being the worst, which makes him throw up. I put him on a GF diet before he could get tested, but I suspect Celiacs since there's a history of other autoimmune disorders in my family. But I digress. I'm glad you're posting about this. :-)

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    1. Thank you so much! I just posted an update a couple of days ago. It outlines all of the treatments I'm currently doing, except sauna. We don't have a sauna for detox, so I've been going outside or using our vehicle.

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  5. Dear Miz
    thanks so much for sharing your experiences at the EHCD. My husband is due at the centre in early December 2012 for a six week stay. We will travel from Perth in Australia. I would love to chat with you more about your time at the centre if you would be happy to. I hope your protocol is helping you.
    best wishes, Jo

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    1. Hi Jo,
      Australia!? WOW!!! I'm so glad you found me. :o) I would be happy to communicate w/ you regarding my experience at EHC-Dallas. We'll just barely miss each other as I plan to return for a 1-2 week follow-up in early/mid November. Let me think of a way to share my e-mail address w/ you w/out doing it publicly. I'll have to ask some of my more tech. savvy friends & get back to you via my blog. Sound good?
      Miz

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