Friday, August 7, 2015

Take Care

Hi everybody! I am kinda stunned that I haven't written anything on here since January of 2014 and it is now August 2015. BUT, I'm happy to report why - I've been doing actually really so much better. I can rely on having energy every day - like 3-4 'normal people' hours, I'm back at like 60-70% health. I started a business with my husband and have been doing some truly amazing things with it. Sometimes it blows my mind at how much I'm accomplishing, actually. I feel like I'm doing things that fully, robustly healthy people would be lucky to get done. And when I do have a bad, unproductive, day (usually only 2-3 of these per month, thank you, full moon), I have these flashbacks of how bad things were and my brain explodes. I've got a new normal, still filled with challenges, but overall I think I'm past the worst of it, for now anyway. 

You know, it's really crazy how perfect everything goes. I suffered. Wow, did I suffer, but working through that process of climbing back up inch by inch wouldn't have been possible if I didn't start at the bottom, you know what I mean? How can you climb up if you don't start at the bottom? How do you know how bright the light is if you've never seen the darkness? How can you possibly have joy without sorrow? Pain is just part of it. Physical pain, emotional pain, it's all a part of how it goes. 

I started getting a little bit more involved in online Lyme stuff again, which has always been a total balancing act for me. When you're sick, you spend all your time online, it's the only social interaction you have, you're busy trying to research more ways to get better since even the doctors seem to still be just figuring this whole thing out, you're online A LOT. When I truly regained some health points, it became imperative for me to put some distance between my little health bubble and constantly reading about and absorbing the struggle. I had to free some head space and physical space to ease back into the real world, basically. So I did, I basically quit interacting with Lyme stuff online, because what I realized is the more I thought about the struggle, interacted with the struggle, the worse I would feel. I would actually feel the struggle more. I was reading about how people are hurting, being shunned, filling my brain with it for hours and hours a day. It's no wonder it started encroaching on my little bubble of health. 

I've come back a little bit to the online Lyme community to help a few specific people in a few specific ways, but I have to be careful, ever so careful, I get so affected by things. Just goes to show that this whole thing (life, illness, wellness) is always a balancing act. That's the real work. Protecting who you are, protecting your thoughts, your feelings, even more than you protect your body, taking care of all those things. Because at the end of the day, you are responsible for what you think, how you feel, and how you behave. You have to act, you have to take care of all of yourself. You can get lazy and just give in to feeling lousy (physically, or about the world, or about your life, or whatever), and sometimes it's the right thing to do, just rest and let it go, let it happen, just please not for too too long. I have to remember to act and to work on it, every day. It's become easier of course since the struggle has diminished, and my years of practice. :0)  So I guess if there's one thing I'm trying to say, it's Take Care. It's ok to take care of yourself, in fact it's the right thing to do, even if means you don't take care of other things. 

Monday, January 6, 2014

How am I, you ask?

It's been a while since I posted a status quo update, so I thought I'd get you up to date.  I'm doing ok.  Actually, I'm a helluvalot better than I was a year ago, and certainly then I was two years ago.  It's still just mind boggling to me to think that I'm still dealing with this, going on 3 years now. I'm doing well enough that I started a company with my husband - he's a composer, so he does most of the work!  I just do the paperwork and deadline-keeping, although not so much the last two months.  I've become more tired, had more headaches and neck pain, but most significantly, much more brain fog, I mean we're talking almost straight up confusion.  

The confusion no doubt is caused by the fact that I'm chelating out lead.  I did a heavy metals urine test, which came back medium for lead, not too shabby!  The doctor said that it may be mercury as well, because they share receptors (or something?  Like I said, brain fog...).  I've already had one small amalgam filling out and will have my medium/large one out next week.  (When doing this, it's important to have it done very carefully, by a biological dentist.  If your doctor still puts amalgams in, that's a big red flag not to have them remove the amalgams, they surely won't do it according to safe guidelines.  More on this HERE.)

Here is the naturopathic protocol I'm currently following:
With this protocol, I'm treating: Lyme, adrenals, toxic black mold overgrowth, chronic Epstein Barr Virus, parasites, lead toxicity, Babesiosis, Bartonella, and several MTHFR mutations (I'm not sure which ones!  Plus, I discovered more that we aren't addressing).

Nattokinase:  This is an enzyme that I take away from food, to break the biofilms.

Adren-all: It's got adaptogenic herbs as well as actual adrenal gland in it.  I tested pretty low across the board. 

Adrenal Health: This one is just more adaptogens, since I muscle tested for needing a little more than the Adren-all.  (Click HERE for an overview on adrenals.) 

Folate 1000: This a form of methylfolate, it helps treat one (or more?) of my MTHFR mutations.

Chlorella:  I take broken cell wall chlorella 3 times a day, this helps carry away mold, Lyme, and any other bugger I'm killing. 

MicroDefense:  I LOVE this supplement, it's a combination of antimicrobials including clove, black walnut, and olive leaf.  It also smells SO good!  My favorite doctor/teacher had this theory that if you have a healthy thing that smells really good to you, it's your body's way to telling you that you need it.  *Does not apply to french fries!

Essential Oil capsule:  I'd like to tell you this one with caution.  Essential oils can be quite powerful and should not be taken without supervision from your physician.  I take this capsule twice a day. I mix up 3 drops each of: clove (for - I can't remember what), frankincense (for oxygenating the brain), rosemary (I can't remember why), and lemongrass (because diffusing it into my eyes eliminated my floaters which we attribute to parasites).

Vitamin D: 5,000mg per day, I can't remember why, I think general immune support?  Wow, this post is becoming less and less useful, isn't it?  Ha!

LDM 100: Lomatium tincture, specifically for EBV.

NK Stim: This supplement is taken with LDM 100, to help increase efficacy.

Chelate-Mate:  Liquid minerals, I take this 1x/day, 2x/day on days I take EDTA.

EDTA rectal suppositories:  Ewie!  They're not that bad. I use 2-3 times per week, most people use EDTA IV's to chelate, but I'm too far from my doctors' office.  Ironically, I usually feel better the day after I use it, this treats the lead toxicity.

Greens First: A greens powder supplement, just because greens are always a good thing.

Nystatin: Prescription drug for mold.

Yucca stalk: I take this for one of my MTHFR mutations. 

Azithromycin: Yup.  Back on those dang antibiotics for Lyme.

Cholestyramine: For mold, as well as high cholesterol.

Lumbrokinase: A biofilm breaker upper.

Probiotics: 15 billion 2x/day, 4 hours away from antibiotics.

Quina: 16 drops per day, I can't remember what it's for - Lyme/Bart/Babs?

St. John's Wort: For seasonal affective disorder.  I.e. winter depression. 

Alinia: 2x/day pharmaceutical for parasites, but only 3x/week for one week on, then two weeks off.  

This protocol has been working out ok for me, I feel ok (better than a year ago, but worse than a month ago), I'm just starting this protocol out.  Prior to this one, my protocol was pretty similar, yet my C4a has gone up from 16,528 to 19,780.  (These numbers are quite high, the reference range is 0 - 2800, but they're better than 59,290 which is what it was before I had my moldy house remediated!)    

Wow, I'm totally forgetting why I posted that!  Hopefully it will help you.  That's my overall goal.  Remember, I'm not some Queen Bee with all the answers, and each of our bodies are different, but if this can help you one little bit, then that's just great. 

If you'd like to get a hold of me, get me on Facebook HERE.  I can't figure out how to reply to comments left here, it doesn't let me for some reason and I don't like to leave people hanging. 

Wednesday, October 16, 2013


You know, I am amazingly grateful to have been dealt this challenge of chronic illness. I know, I know, everyone who says that is just being naive.  So what, call me naive if you don't think this is a good way of looking at things.  Have fun focusing on all that's gone wrong instead.  

I always liked to think I was a strong person, the type of person who could bear anything, rise above it, fight, win.  But it was never put to the test like this before.  Having been there, having sunken, and having slowly, steadily risen up again with nothing but sheer will.  Being shown and having proof that I have this kind of resolve and resilience is an amazing gift that most people never, ever get.  They don't really know how they'll fare if something terrible happens to them.  But I do.  Now I know how bright the light is because I was shown the darkness.  Now I know how strong the strength within me is because I've had to use it to push back.  I was challenged and I met it. And won. I. am. strong. 

Tuesday, April 2, 2013

Lyme is what you HAVE, not who you ARE

The relationship between a host and its parasite isn't usually a complicated one.  Once the host becomes aware of its host status, it tries to eliminate the parasite, often with ease.  But having Lyme is waaay different, your 'parasite' doesn't just go away with a quick prescription and a few weeks.  If you have chronic Lyme, it's something that you have for a while....years usually. 

I struggle with the idea of mentally accepting the Lyme diagnosis, like I'm sure every single Lyme patient does.  On one hand, accepting it is good because then you have a target to shoot at (but then again that target is inside you, so...).  On the other hand, do you really want to create the mental space for the Lyme bug? After all, you're already giving it physical space.  Maybe you don't necessarily want to let it shack up in your mental energy either, most of that is already sucked out in coping with the loss of your work, school, social, even essential day-to-day tasks life. 

Making an energetically accepting attitude toward that Lyme bug might make it easier to stick around, maybe it will pick up on your 'it's ok that you're here' attitude and prolong its stay.  Yet, you can't always mentally be at war with your body's invaders....can you?

So.  How do you accept your infection while not accepting your infection?  Think of it like jail.  You don't want to be stuck in there with bad guys.  But you are.  You can tolerate them, but you don't wanna get too chummy.  Accepting the current situation is a good reality check, but just because you're locked up together doesn't mean you have to get too comfortable.  And remember that it's only a matter of time before you make bail and are free again.  All things are temporary. Plus, there's plenty you can do to ensure you get free, and that's the best part.  

Friday, March 22, 2013

How do your genes fit?

I'm a mutant!  Run for your life!  I have genetic mutations, that is. 

I've found a complete game changer in my healing: genetics!  Genetics is very complicated and complex and your genetic information is PURE GOLD when it comes to healing.  You ever wonder why so many people can handle their Lyme Disease (and don't even know they have it!), or why every single treatment plan is different, why some people respond to certain medications and some don''s all in the genes, man.  Knowing your genetic make up is an absolute game-changer when healing. 

At the behest of my favorite LLND, I did a gene test through a company called 23andme.  Initially, I was interested in finding out if I have a couple broken genes (specifically ones for detoxifying and mold accumulating).  It took me awhile to do the saliva sample and send it off, I guess because knowledge about your genes isn't knowledge you can UN-KNOW.  And, your genes are something you can't change, either.  But I finally decided, ok, I'd get this done and focus on the few genes that can really complicate healing from Lyme and toxic black mold.

When the results did come back, a whopping 6 weeks later, I was more lost than I was before.  Because of the type of lab that 23andme is, they do not interpret your data for you and you receive 40 pages of what looks like serial numbers  (but hey - that's because it only cost $99 instead of $800!).  MTRR A66G, CBS A360A, and COMT V158M are examples.  So you can imagine, I was left scratching my head.  I did some sleuthing and found a site that you can run your results through and it kind-of turns it into useful information.  The key with this is to have your data interpreted by a nurse or doctor or someone who's familiar with reading raw genetic data.  

Anyway, the genes that affect my immunity and healing and were found to be mutated and causing problems are VDS, CBS, and MTRR.  

So basically, my body lacks the ability to make a crucial enzyme that's needed to process stuff through the body.  And, the previous step to the broken enzyme-maker is also busted.  And the one that has something to do with vitamin D absorption, and I think maybe there was another mutation.  Great news is that we can work on all of it with specific supplementation in a specific order and time frame to get back on track.

Without knowing this, we would have been shooting arrows in the dark.  In my experience, knowing my genetic make up has been positively instrumental in getting this healing done.  

Note: I just cannot figure out why I'm unable to reply to comments here on the blog.  Oh, computers.  I'm stumped and don't like leaving people hanging.  So if you do have a comment or question, please get a hold of me on my Facebook page  

Sunday, March 17, 2013

Like sand through an hourglass

No, I've never been a Days of Our Lives watcher (if that's even the right soap opera that phrase comes from).

Yes, I have been getting better - most of the time, overall I think.  I'm still dead tired, having temperature regulations problems, tinnitis, dizziness, headaches, neck pain, and my right knee really hurts, but none of that is nearly as bad as it was a year ago.  A. year. a. go.

We're working on refinancing our mortgage and the woman at the bank was asking me about my work history - ha.  Since I've been too sick to work (except for these great couple of months before I got too worn out again in the fall), we have to do some extra leg work to do this refinancing business.  So naturally, this dear woman was very curious why a perfectly normal-looking person is sitting in front of her telling her she's too sick to work.  She vaguely recalled something about Lyme Disease and this STILL Lyme Disease?  And the answer was, Yup.  Since August 2011.  That's when I got all weird in my head.  It's 2013.  

I've been sick for approximately 1 year and 7 months.  1 year and 7 months of feeling lousy isn't that bad, but 1 year and 7 months of wasted productivity is.  And don't get me wrong, I count myself lucky - there are plenty of people who are far sicker than I am, have no access to healthcare (thanks a lot, for-profit healthcare system), and have been sick for 15+ years.  I count my blessings.  

I just wish I could work on all these projects I used to work on.  Or could have the energy to make my husband dinner every night.  

This is when I have to remember the key to all of this - thankfulness!  No, I couldn't spend 5 hours today working on my projects, but yes, I was able to eek out one blog post!  No, I didn't have the energy to stand for 45 minutes to wash dishes, but yes, I was able to bring all of them to the kitchen.  Don't spend your energy or your time focusing on all the can't's in your life.  That won't be worth your time.  But feeling better about what you can do is well worth your time. 

Thursday, October 25, 2012

This mold house

Mold, mold, mold.  Ahhh, that terrible, invisible, frightening thing.

Mold is a big problem, even if you don't have Lyme.  And when you do, it's a double whammy of neurotoxins.  But take heart, there are plenty of things you can do to make your house safer and healthier that are pretty cheap.  (And of course, there are things you can do that are not very cheap)

My LLND told me that I should get my house checked out since many of my symptoms appear to be more mold than Lyme.  !  We started out with a vision test for $15 that you can do entirely online, she said this would give us a good indicator as far as how moldy my body has become, and based on those tests we would consider how to treat or further testing that costs more than $15.  And here it is:  The premise is that certain biotoxins affect your vision in a very specific way and this vision test can be an indicator about the biotoxin level harbored by your body.  I failed it miserably, and so she ordered a C4a lab test - this is an indicator for the mycotoxin load my body's carrying.  (Mold spores themselves whether dead or alive are an allergen, but the living spores also spray out what's called a mycotoxin - this is the big, bad thing that sticks in your body and tries to decompose you).  We're still waiting on the C4a results, but based on the mold testing we did on the house (which came back positive for the most poisonous and the second most poisonous mold), my doctor put me on Difflucan, an anti-fungal to get started on some sort of mold-clearing.

So the issue with mold is that it's a neurotoxin - like Lyme.  And my doctor put it really plainly as far as the importance and urgency of clearing the mold - both from my house and my body.  She said that Lyme wants you alive, it wants to disable you a little bit so that it can thrive - but Lyme needs you alive; mold doesn't.  Mold wants to kill you and decompose your body into nothing.  

We were able to get our house professionally remediated and we found the source of the problem - leaky basement and leaky pipes.  Getting those fixed is the big picture, but there are lots of other little things we're doing to ensure we have a healthy house.  (This two-pronged approach is best - eliminate the source that's causing the mold and eliminate the mold stuffs already sprayed into the air.)  

Dehumidifiers are essential for damp areas like basements, as well as real HEPA filters in air purifiers (careful with this, lots of air purifiers have really sneaky wording so you have to be sure that you're getting one that truly captures mold spores, as small at .2 microns in size).

Aside from those, a new thing I discovered is Thieves essential oil, the air inspector said that she's seen it work wonders - she's seen spaces go from 25,000 particles of mold per square meter down to the normal 400 particles per square meter, after only spraying Thieves Household Cleaner on mold 2x/day for 2 months!  I found the recipe and made my own and have it running in an essential oil diffuser 24/7 (bonus - it smells kind of like cinnamon and spice, perfect for autumn!).  I also learned that getting a German made vacuum with a closed system and HEPA filter will be an item to save up for.  Normal vacuums, even ones with 'HEPA' filters recycles the air, but the German made vacuums are actually better at cleaning the air than air purifiers - the air that comes out is cleaner than the air that goes in!  

Cleaning is also essential - we are now spending much more of our time sweeping, vacuuming, and dusting because dust is the perfect little thing for mold to attach itself to, it's great at riding the dust.  At this point, we're still cleaning out the hyphal parts (dead mold spore pieces that are still an allergen).

But now, I can breathe again!  I'm still sicker and it will probably take a while for the mycotoxins already present in my body to get cleared out, but we'll get there.  One day at a time.  Just imagine how much healthier I'm going to be when my body is free of mold and can focus more on executing that Lyme!  (Also I feel extra scatter-brained today, so sorry if this post didn't make very much sense, you know how that goes)