When your eyes are opened and answers are given it’s amazing the things that become clear.
Coincidences are no longer a coincidence, but are seen as something much more, something that has had a guiding hand on us,through all this time.
Last Thursday I had a phone call from my specialist in Sydney for my CFS.
I had rang earlier to make a follow up appointment in April, but after looking at my test
results he wanted to see me a lot sooner than later.
So yesterday my husband and I went up to Sydney for my appointment and boy what an appointment it was!
I have walked out feeling incredibly blessed and I have felt like I have been offered the silver platter with a new lease on life-sitting right on top of it! (I’m sitting on top of the world!)
Not because of all these illnesses I have but because in spite of how sick I am I have my six children!
I’m going to explain everything as best I can; this is what I have learnt today that I have a genetic disorder.
I have a significant methylation defect with MTHFR C677T homozygous mutation and markedly low B12 for that type of mutation. One outcome is failure to bring infection and inflam- mation to a halt. This results in common microbes showing the high antibody responses, leading to the fatigue probably related to my cytokine release.
So basically each of my parents have one bad gene each and I just so happened to have them both, which is extremely rare and an unusual combination.
I carry the DQ2 phenotype that results in either coeliac disease (which I do not have) or non-gut immune hyper-reactivity, which I certainly do have. My HLA-DR (activated T and B) lymphocytes are 32%, way above the typi- cal 10-12% when immunology is settled. My Doctor think’s my gluten sets the stage for immune activation and worsens allergy and reactivity.
I need to reduce / cut out all gluten (really, gliadin, a proline sub-fraction of gluten) for 2 months to reduce immune activation.
So where as someone with CD* cannot tolerate ANY wheat with out the risk of causing permanent damage, I will eventually be able to have gluten a couple times a week depending how my body reacts.
Its also been picked up that I have Thyroiditis, Goitre. plus my body isn’t absorbing things like protein due to the problems I have and also partially due to having my gallbladder out.. he thinks I also have Endometriosis.
I also have Active EBV- Glandular fever, Streptococcal infections to name a few.
He can not believe with the genes disorder that I was able to have six out of nine successful pregnancies…it should have been a lot less. Some where around the 50/50. I have read this gene is needed to help the pregnancy become viable , so that the body does not reject it. BUT somehow my body has manage to bypass it all to have these babies…he did say I’m extremely fertile-looking at my hormonal levels! (Ha! think we knew that!)
I will be having B12 injections, steroids and a type of foliate and going onto a gluten free diet…he said I will start feeling better in a matter of weeks…that by 6 to 12 months I should feel a big improvement…big enough that if I wanted to I could have a baby and quiet possibly have a normal pregnancy!! 😉 Which for me would be AMAZING!!
He did say I will always have these infections…or I think he may have meant the EBV… that they will stay in my system …So I think it’s just a matter of knowing what to do to help my body not fight so hard when the infections are gone or not active. My allergies are also out of whack and due to other symptoms he thinks there may still be more going on.
So last night I came home and was just so overwhelmed and excited and speechless and just generally trying to take it all in and what it could mean for not just me, but my family for me to become a lot better than I have been.
All these possibilities were entering my mind, what I could actually do with my life-All the things I only have ever dared to dream.
The one thing I knew for sure with out any doubt, that my faith in God had helped me through all of this and in spite of medical testing and knowledge God had made it possible for me to have these beautiful children. With God all things are truly possible! Glory to be in His love and many blessings He has given me.
Hope is in the air!