Lab Results and learnings from today's RA appt (very long but full of info!)

Hi all,

Thought I would share my results so far.  I get the Candida and Thyroid next week though. (A lot of this may be review for you long-timers...)

Let's see...

1.     I have a double mutation of MTHFR.  This basically means that at birth (thanks parents!!) I could not use Folic Acid appropriately and now cannot detoxify my body.  For more simple-to-understand info: http://www.stopthethyroidmadness.com/mthfr/ This also means that unless I get my body to accept and correct the detoxifying process through folate, I could very well have children with physical symptoms of folate deficiency (down's, spina, etc). Children are still up in the air for now but it's good info to know!

2.     I am just under the Vitamn D 'normal' threshold, at 29 (normal* is 30-100).  I have increased this from 19 since last October, so progress is possible.  Now the interesting part: because Fibromytes have such low immune function, we rely on Vit D3 to open up the pathway so that our immune system will function like a normal person.  *The 30-100 'normal' guide for the western medical community is actually for NORMAL IMMUNE FUNCTIONING people.  Those who have immune deficiencies or illnesses (fibro, CFS, cancer, etc) should really try to get their D levels to 80 or above.  There is a risk of having too much Vitamin D but my RA said that it's only at 200+ and it only effects 10% of those over 200+.  So over the next few months I will be increasing from my current 3k/day to 10k/day. 

Something else that is very important that I have no clue about...  When vitamin D is properly functioning in your body, it will fight the immunity killers (toxins, viruses, etc), but then it will release them so that your body can rid itself of it (my RA said a lot of deep breathing helps get rid of toxins, not sweat - take that hot yoga!).  This means that all of those toxins are floating around in your body making you feel like crap.  So every time you increase your D3, if you notice that you feel like crap for a couple of days - its a good thing because it means that it's functioning properly.  I have felt like utter dog poo for the last few weeks and lo and behold, it's because I started taking my D3 again after realizing that I had stopped a month ago (bad girl!).  So I really really really need to get organized and proactive about my supplements, post haste.

3.   I have Epstein Barr.  While most adults carry this and don't have symptoms, a lot of fibromytes have such low immune function, so much that their viruses refuse to stay dormant.  My results are .9, and 1.0 is affirmed positive active EB. Anything over .2 or below means that you've had, but you've built antigens and it's dormant. So basically I have what appears like chronic mono/EBV - which makes a LOT of sense.  But I don't test positive for actual mono - which is peculiar.  I assumed that if you had symptoms, it had turned into mono. And apparently my immune system hasn't figured out how to fight it.  Lovely.

4.     The other POS, I mean super fun immunity challenge (that's a great name for a Fibro TV gameshow!) is that I also have Cytomegalovirus, another virus in the herpes family that produces flu/mono like symptoms. So its a double whammy. For easy to understand info on how this connects and affects Fibro, read: http://health.usnews.com/health-news/family-health/bones-joints-and-muscles/articles/2008/04/11/a-new-fibromyalgia-remedy-antiviral-drugs What is interesting about this particular strain is that it can induce food and air allergies for folks who normally don't have them.  This explains why I am suddenly allergic to wheat.  I wonder what else I am allergic to that I haven't even found a pattern to yet!

5.    While they didn't go over this in today's appointment, I show that I am also positive for Mycoplasma Pneumonia.  I have no idea if this is related to anything or is just a stand alone virus.  I have had walking pneumonia before - maybe this is just confirmation that I am still a carrier?  I should have more info next week.

6.  Also very high positive in HHV 6.

HUGE DISCLAIMER:  I am not a doctor and this is not medical advice.  I am just sharing info since a lot of this more modern treatment info isn't readily available in one location online.  :)

So basically I am just one big mess of herpes viruses.  AWESOME. I will be taking a ton of Valtrex for the next couple of months and while I will feel good afterwards, I am looking at worse symptoms while all of this happens.  I will also be taking "VSL #3" probiotics (a mix of different ones in one cap), to help clear gut flora and to help all of my medications and supplements help fight a little better.  I am also taking pitocin already for pain and muscle healing as well as starting nitroglycerin to help with blood flow and pain.

I briefly looked at my thyroid results and unless they are listed on some other paperwork which I don't have access to, then I think we're good for Thyroid as TSH was normal as well as reverse T3.  So that's one thing I don't have to worry about for now. 

Off to make my candida-free (ugh) shopping list!

Post Edited (AnnaBananna) : 8/20/2013 3:19:01 PM (GMT-6)

What blows my mind is the sheer number of things that are making me sick. I honestly thought I would walk in and he would say: you have a candida problem. And that would be it and I would make some dietary changes and voila! No more symptoms. I think I am in the mourning process. I haven't stopped crying since I got home from work. I was on the bus today and silently cried thinking that I might not ever feel normal again. It's such a scary thought.

Earlier today I was talking to an old colleague about how my personality has changed. I am normally very energetic and positive and I guess it's obvious that I am on the 'mute' bottom currently. It makes me sad. And no matter how much fight in me I have, I can only progress as fast enough as my body will allow. I feel powerless and its just a very new feeling.

Thanks, that means a lot. I try to be, and honestly I find myself pushing to be upbeat even when I am not and it takes a lot out of me.

Ya, herpes is weird. There are the two kinds that affect mucous membranes (mouth/genitals) and then a ton that do way worse to your body including shingles/chicken pox. Before today I had no idea about the other ones and frankly I wish I had just the simple genital and cold sore ones. And this is strange - I do get cold sores about once a year and I wonder if its all connected. I've been getting them since I was a kid. If they are connected then holy hell - who gave me all these different strains?? And what a lucky roll of the dice to get all of these and develop fibro later when they're all harder to deal with. I'm assuming it's like having chicken pox as an adult. And if that's the case, I mean....it truly is a wonder how I am going to work every day. Don't get me wrong, I feel like doodoo but maybe they cancel each other out. hahaha Or, worse, I'm just really starting to get used to feeling this bad.

Anna, all of those ailments can be successfully treated with the same prescription as Candida....strengthen your immune system. Whats the best way to do that?

1. Dietary changes and immune-regulating supplements
2. Stimulate your lymphatic system (any type of jumping exercise, like a trampoline or jump rope)

That's all there is to it. Don't be sad. The optimal treatment is still the same. And someday who knows, you might even get to say: " I strengthened my immune system and beat EB, Cyto, AND HHV!!!" I think that would be very impressive! You can do this!

Hi Anna,
Your post is very interesting to me. about ten years ago I had Epstein Barr, got over it with the help of a naturopath.

Then when my son was only 6 months old I got Mycoplasma Pneumonia. I was very ill for 3 months, they kept treating me for A typical pneumonia and I was not getting any better. I refused to go to hospital as my son was so young. It still re-accurs in winter even now 8 years later. My doctor, who is very good, said that is cellular pneumonia and actually becomes part of your cells which is why it can re-accur.

Two years ago I got yet another virus, Pavro (also known as slap face). This was when the fibre pain and other symptoms started. My initial flare knocked me off my feet for two weeks, I could barely function. Extreme pain in all my arms, legs, feet, shoulders, back, hips etc.

I saw an infectious disease specialist and he tested me for everything under the sun. Told me that I was prone to virus's and that I had fibro. Had not even heard of it before. Ironically my thyroid has also been fine but I also have very low vitamin D levels. Find that if I feel really bad an injection of VitD really helps.

Thanks for your post, it was helpful for me. All the best.