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)

Sunday, September 23, 2012


Pilgrimage: noun; any long journey, especially one undertaken as a quest for a votive purpose. 

So this being sick all the time thing is definitely a pilgrimage.  It's long.  It's a journey.  It's undertaken as a challenge, albeit involuntarily.  The purpose is to survive and get better.  

And boy, am I feeling the challenge right now.  I had one month of near-well health - energy, hardly any headaches or pain.  It was such a sweet reminder of the goal I'm working towards.  So I started to set my life up again - working, resuming classes, even planning my husband's 30th birthday party.  Then, WHAMMO!  I got sick again.  I am resuming treatment, this time with super hardcore, high dose antibiotics (I was able to get away with relatively low dose before) and I'm doing all the things I'm supposed to be doing to get better.  Only now, I have work, school, and this party-planning to do.  Things were so much easier when I could just stay in bed and be sick.  I have no idea how people do 'being sick' AND work, classes, or any other obligation.  I commend you, true Lyme Warriors, I know you're out there, working hard and being sick and trying to hold it all together.  And in way more dire circumstances than I am right now.

I think at this point, I would rather have less functioning and more pain rather than where I am right now.  I have some pain and some functioning, but not enough to meet all the expectations I've committed to.  Even after already cutting those expectations in half.

I feel totally lost.  Totally inadequate.   I have no idea how I'm supposed to organize the mold remediation that has to be done (oh yeah - did I mention we discovered we have the most poisonous mold and the 2nd most poisonous mold in our house?  This is making me even sicker.)  I can barely get through a 5 hour day at work.  I can barely drive.  I've outlawed myself from driving on the highway because I had some close calls. Apparently I can't even keep my brain on long enough to pay attention to driving.  My dear sweet husband has had a bad year and it's his 30th birthday and I wish I could just keep the details straight and simply plan a freaking party for him.  But I find myself not remembering where we are going, what we are doing, or all these other details, let alone how they all are supposed to fit together.  This is something I normally would be all over and it would be awesome.  He really, really deserves just one fun night.  And I totally wish I could give it to him. 

I suppose it's just time to be honest with myself and everybody around me.  I just can't do this stuff right now.  Not that I won't be able to once I get better (whenever that's going to stick), and not because I am some sort of invalid person.  It's really simple.  I'm just too sick right now.  

On the bright side, once we figure out this mold situation and we get it all resolved, I'll probably feel a ton better, right?  

In the meantime, I'll just keep chugging along and doing what I can.  Counting the blessings that I do have, and trying not to think too much about the rest.  

There.  That felt good to get out.  Now, for the icing on the cake, I'm going to go emotionally eat.  Probably some popcorn. 

Thursday, September 6, 2012


What a tease.  Some of you out there may know that I was able to begin work a few weeks ago - antibiotic-free, relatively symptom-free (well - less symptoms, enough where I could get through an 18 hour a week job anyway).  By and large, it was going quite well.  Until.

Until I spent all last weekend (it's Thursday as I write this - I think) in bed.  It was all too familiar.  Tired.  Headaches.  Stiff neck so stiff it was just roaring, unabating pain.  I spent this whole year that way, if I had the presence of mind, I would have been more upset about it at the time.  

Not long ago, my dear sweet husband moved the couch and discovered mold on the floor.  Black mold.  (Ughhhh)  He then valiantly proceeded to eradicate it and I had the bright idea that we ought to refinish the floors (it had been a long time since that had been done.  We were getting slivers!). WE.  Hahahaha.  (For the record - I really did mean 'we,' and it did start as 'we' before it went to just 'he.'  That super awesome man did the whole thing - sanding, staining, polyurethaning).  

So we weren't sure if I was having an acute mold toxicity issue or maybe it was stress from work, but something put me DOWN and out.

I went to the doctor today and got a glutathione injection as well as a vitamin D injection.   We deduced that it is both - I've got a mold toxicity problem AND the Lyme is coming back.  Great.

I feel so done.  My trained brain (that is - the brain I've trained to be hopeful despite hopelessness, to see the bright side in spite of all the darkness, to seek things to be thankful for  rather than to seek things to complain about) is telling me that 1 year is a phenominally fast recovery.  And of course, naturally a set back is to be expected and even looky-here, we caught things nice and early before I had too much of a regression, so I'm still sittin' pretty and doing well.  True.

But my lazy, strictly reactive brain and feelings are so done.  I am so sad and mad and frustrated that more time, more resources, more energy have to be spent.  And here I was thinking I could host this grand 30th birthday for my husband at the end of the month (who so much deserves it).  Now I get to talk to my boss about taking breaks and working less.  And I get to drop a class again.  And I get to spend a bunch of money again.  

I really do feel like throwing a little hissy fit and just crying and stomping around.  I did some of that today and it did seem to help.  Plus, I guess I would rather be optimistic and happy than grumpy and upset.  We'll see.  Maybe I'll go back and forth for a few more hours today.  

What a tease.  4 weeks of relative freedom from sickness.  But, it ok.  I would rather have had them than not.  

Months of penicillin, here I come.  

Sunday, August 5, 2012

Here we go

A rather monumental date for me is coming up soon and it's leaving me feeling all kinds of stuff.  I'm a little bundle of emotions.  ;)

Last year, on August 13th, 2011, I laid down in my Wisconsin backyard to watch the Perseid Meteor Shower.  Being the impulsive person I am, when I got home from working late that night, I just went right out and plopped myself down in the grass, no bug spray, no blanket to lie on - who cares, I was just going to be in my own backyard doing some stargazing for a bit. It was cool, clear, and the grass was a little pokey, but mostly comfortable.  The air seemed fresh and refreshing, it was nice, save for the bug bites that started after a little bit. 

That was the night I got the bite that gave me Lyme Disease.  And I didn't see even one meteor, either.

As if set on a timer, 2 weeks exactly after that night, I developed quite substantial joint pain and headaches, and there started my journey with chronic illness.  

I can't believe it's been about a whole year.  I count myself oh so very fortunate (blessed?) that I am honestly about all better.  It mystifies me that I had the right group of healers, right family, right husband, right everything to guide me through this whole mess in only one year.  It's like everything was set up just for me to have what I needed.

It's hard to believe that I had months of late assignments and dropping classes before withdrawing completely from school last fall.  And now, in less than a month, I will be picking up where I left off (just 2 classes though - the easiest ones).   

It's hard to believe that about a year ago, I became completely unreliable at work (a grieving process unique to those who get sick or injured, I think).  And soon, I'll be starting work again with a very understanding boss who knows my whole medical history.

I'm enormously glad to pick up my life again, slowly, with caution, but with an overwhelming amount of gratitude that I even get to try.

What a year it has been.  And I really do think that this episode of Lyme is just about at its close, that is, until I have some kind of trauma like a car accident or a surgery.   Hahaha.

I do have plans to watch that meteor shower this year, perhaps from the seat of my car, or slathered in insect repellent sitting on a lawn chair.  Maybe I'll get to see a meteor this time.

It ain't about how hard you hit.
It's about how hard you can GET hit,
and keep moving forward.
It's about how much you can take,
and keep moving forward.
That's how winning is done.
                   ~  Rocky Balboa

Sunday, June 24, 2012

Pink angels, huh?

Lyme Disease, grief, fibromyalgia, depression, and plenty of other illnesses are invisible, you can't plainly see that a person is suffering because there is no visible proof.  As people who suffer from invisible illness, we are pretty aware of how powerful and real something you cannot see can really be.  

I'd like to tell you about something profoundly personal that happened to me.  Probably the most personal thing I will ever share with one simple click.  You don't need to believe it to have happened at all, let alone to be as significant as I believe it to be, but please be respectful to me after you read it.

Just shy of 12 months ago, my mother-in-law died of pancreatic cancer (you may have been wondering why I keep mentioning grief as an invisible thing that makes you suffer, this is why).  She was wise, fun, artistic, and deeply spiritual.  She left behind many pieces of art - poetry, children's stories, but mostly paintings.  When we got all the stuff printed up for the funeral (the memorial cards, thank you cards, etc.) we had one of her paintings printed on the cover - an angel with the handwritten verse: 'See, I am sending an angel before you to guard you along the way. Ex 23:20'  We thought that would be especially significant and nice, since she had painted an angels series and given one each to her 5 children. 

As I've been healing and getting better, I've been trying to make up for the last 10 months of little attention paid to my spiritual well-being, what with pretty much all my energy put into my physical well-being.  It probably has a lot to do with the 1 year anniversary of my mother-in-law's death just around the corner, but I've been doing a lot of reflecting on the spiritual nature of things, outside myself.  You know, all that invisible, yet powerful stuff.  But there was an event that started this new focus.

I was talking with an open-minded someone (who has a medical background) about my health and we were talking about my fever and my joints, it was kinda like a doctor's appointment.  We were both thrilled and excited that I seem to be getting much better. When we were almost done talking, she said, 'and why are you pink?'  I looked at my arm, it didn't look pink to me, I did feel a little flushed so I replied, 'I don't know, I'm kinda hot right now.'  Then she said, 'no, I mean an aura, there's pink all around you.'  (Now I know what you must be thinking - it's kinda weird when people say they see colors around people.  Maybe they do, maybe they don't.  Who knows why or why not, but remember I'm speaking with someone who has a medical background and is also open-minded, not a grass-skirt-wearing, patchouli-scented moon maiden).  I didn't know if she really saw the pink or not, either way, it was fine with me if she wanted to think she saw it.  Wanting to be respectful, but not quite knowing how to respond, I kinda looked at her, and as nonchalantly as I could, I said, 'I don't know.'  She kinda shrugged and said, 'Oh well, must be angels.  You do have lots of angels around you.'  I thought to myself, 'pink angels, huh?  Sure, I'll take 'em, I'll take all the help I can get!' I think I mostly forgot that happened, because I didn't think about it again for a while.

A few weeks later, I was standing in my husband's office and was admiring this stained glass piece that one of my sister's-in-law had custom made for us.  It's a beautiful piece of the angel my mother-in-law had painted, the same one we worked with a lot in putting the funeral together; a nice likeness.  I don't know how I never noticed before, but it's pink. 

My pink angel(s).

'May you be aware of His angels near you to bring strength and hope and peace.'
   ~  Handwritten by my mother-in-law on the back of the original angel painting  

(*Can I also just say how resilient and full of strength my husband is?  Within a 2 month period, we watched his mother get sick and die, the dog he's had since he was 13 get sick and die, and me get sick.  I don't know where I would be without him and his ever-caring, compassionate, healing self.  I am so lucky, I can't even stand it.)

Monday, June 4, 2012


I think that when some big things happen in life, like the death of a loved one, a chronic illness (like Lyme Disease), or an injury, or something else that makes your life change drastically, you, most times unwillingly, are entered into a club. A club of people separate from the normal life and daily 'worries' that most people live in.  Your biggest concern is no longer what to wear, what to eat for dinner, vacation or business decisions. Your biggest concern is how to get through one day.  Today.

You have entered a world of challenges and changes coming so fast and from everywhere that it's hard to keep up.  Nobody teaches you how to give up your job, your social life, your school, or other things that make your life your life.   It's easy to feel alone, desolate.  After all, everyone else is still concerned with the latest hairstyle or where they'll go next for vacation and they don't really understand what you're going through.  (Keep in mind, through no fault of their own - I mean, face it - you didn't consider that life could be so hard until 'it' happened to you.)

But the other side to the usual 'odd man out' feeling is that you have become a member of this thing called the 'hard knock life.'  There are plenty of people who are also suffering invisibly, just like you are.  You probably don't see them at work, or at the library, or in your normal everyday life.  But they're there.  You just have to find them.  (Thank GOD for the internet, right?)

Some of you may be familiar with the political state of Wisconsin right now - there's a recall election coming up, tomorrow actually, to decide if we want to keep our present Governor, Scott Walker, or elect someone else, Mayor of Milwaukee Tom Barrett to take over.  I only mention it because one of the bigger catchphrases of the side who wants to elect Tom Barrett  is the pro-union side, who often uses the uniting battle cry 'Solidarity!' to stick together with the rights of the union interests.

Solidarity means sticking together, a group of people with a common interest or common responsibilities.  And that's us.  Even though you probably won't meet others struggling with chronic illness or grief or injury in your every day life, you are not alone.  There are others with your shared interest (getting through today) and your shared responsibilities.  You just need to find them.  And if you read this, you just did.

Friday, May 11, 2012

Judge not

An enormous lesson that I’ve taken from this whole chronic illness thing is do NOT judge.  It might seem like a strange connection, and I suppose it is.  But once you become one of the slow, inattentive bad drivers, wearing sweatpants in public, walking really slowly down the aisle at the grocery store with frustrated people trying to get by you, you realize that hey – all those people I would have normally judged as lazy, slobs, totally unaware of manners or of themselves – probably have some pain going on that forces them to be that way. 

I don’t know if I’m the only one, but I am getting well enough that I am starting to become aware of how I appear in public.  I used to be so sick that when it came down to it and I needed something from the store, I would muster up all the energy I had to get out the door and get it – unbrushed teeth, sweat pants, and hair a bird could nest in.  I was so sick that it never occurred to me how crazy I must have looked, especially thrown in that I am sure I was walking really slowly, trying to deal with the vertigo and dizziness that would normally cause me to walk right into a wall.  I was so sick that all I could think about was picking up the medication or whatever I needed to pick up. But the better I’ve gotten (HALLELUIAH!), the more I’m starting to return to a state of normalcy.  With the weight gain of lying around for 7 months essentially immobile, and with all the crazy things Lyme does to your body to get you to create more fat where it can thrive, I don’t really have any pants that fit anymore.  So I’m still out in sweatpants, but at least my teeth are brushed and hair is somewhat presentable.  I know I still look bad, compared with normal standards of people being out in public, and it’s pretty clear now that I am noticing the looks I get.  Looks like ‘Gross – this lazy girl can’t even put jeans on?’ or ‘Ew, what’s wrong with her.’  That moment when I am looked up and down, get eye rolls, and their lips curl up.  Ugh, it's like high school all over again!

The thing that makes me the most comfortable when I'm presenting my sick self to the world is to wear my lime green ‘Lyme Awareness’ bracelet, and kind flash it around a bit, so maybe the onlookers will see it and realize that I’m sick. And THAT'S why I look and act like I'm totally out of it.  It's not drugs.  Well, not the recreational kind.  

I do have to admit that I used to be one of those smirking onlookers!  Judging all those ‘People of Walmart’ and people seemingly unaware that I am TRYING to pass…why can’t they just move a little faster?

But I get it now, having been on the other side.   Plenty of people are suffering in visible ways AND invisible ways.  They're sick.  Or grieving.  Or injured.  So don’t be judgin.’  Don’t be hatin.’  Because you have no idea what people are going through.  

Thursday, April 26, 2012

My new status quo

It dawned on me today that you might be wondering how my naturopathic protocol to eradicate Lyme has been working out for me.  Well, here’s the scoop!  (Here’s the protocol I’m talking about:

I have been on this protocol for about 5 months, with only a few adjustments, everything remained largely the same.  The neat thing is I have had check-ins with my ND usually every 4-6 weeks (or more often if something came up) to make sure the plan is working well and all is running smoothly.  And for the most part, it has. 

I have definitely been improving, just slowly.  (Although 5 months might not seem so slow to most Lymies who are out there fighting the good fight for at least a few years now – you GO, Chronic Badasses!).

My foggy brain is not a normal way of living now, it remains on some days, but to a much lesser extent than it had been.  Headaches, the same status.  Fatigue is probably the biggest symptom currently, but nonetheless, much better.  Now, there aren’t any days spent in bed all day, and I have the energy to definitely do a couple things each day like dishes or pick up medication or even grocery-shop!  Ringing in the ears used to be constant, now only sometimes.  I still get some vertigo-type feeling where it seems like my brain can’t keep up with the information my eyes are taking in (ex: turning my head to look left then right causes some dizziness and disorientation – this is why driving is a nightmare and I don’t do it unless I absolutely have to).  Nothing weird with the senses anymore – no sensitivity to light, sounds, or strange smells.  Joint pain, muscle-twitching, and air hunger are doing really well – mostly dissipated or rare occurrences. 

I’m now in the phase where, knock on wood, my doc says I’m approaching the clearing and nearly out of the woods!  She said Lyme is no longer much of an issue, instead the Babesia and Bartonella coinfections and the biggy is the Epstein Barr Virus that took the opportunity of my sick body to invade. 

Here are the updated modifications on my naturopathic protocol, although it is largely the same as the original one (I’m just listing the adjustments, not the whole protocol.  There's a lot more I'm doing the same as the original one ~ link above ~):

Replaced the Viressence Tincture with a custom one.   I was taking a Klinghardt formula as an anti-viral, but switched to a custom herbal tincture from my ND, it has Cat’s Claw, Elderberry, and Hawthorne in it for the Babesia, to boost immune function, and to help my heart health.  Taking 90 drops, 2x/day.

Artemisinin is now 2 days on, 5 days off (instead of 4 days on, 3 days off).

The spleen glandular was a temporary one, took for awhile to help my spleen handle everything better and it worked, so I discontinue that one per my doc’s instruction.

Bentonite Green Clay was switched back to the chlorella as the binder/detoxifier, simply because the chlorella was a pill form and easier to take.  Now, I take 2-10 tablets, 2x/day, depending on if I feel like I really need it.

Lyme & Coinfection Nosode was discontinued for now, since it appears I am nearly out of the woods! 

Minocycline and Ceftin are discontinued!  Yipee!  That’s my favorite one – no more daily antibiotics!

The new additions to my naturopathic protocol include:

Tindamax, this is an antibiotic I’m taking 500mg, 2x/day for 2 consecutive days per week, not on artemisinin days and not on Lightning Pearl days( so 2 days on, 5 days off).  This is the poke that’s going to make sure the Lyme is really gone.  Doing this one for 2 months.

Lightning Pearls, these are Chinese Herbs in capsule form with such herbs as wuaipi, baihe, and baizhi.  I take 2 capsules, 2x/day.  10 days on, 10 days off.  At this stage of the game, Chinese Medicine is really helpful in removing the ‘Gu,’ what Chinese Medicine considers Lyme to be.  It is very fascinating.  Here is an article that talks about translating what the Western world of medicine knows as Lyme to what the Eastern world of medicine knows as Gu.

Acupuncture sessions have really helped in conjunction with the Lightning Pearls.  I try to go weekly or at least every other week. 

EBV Drops, I take this homeopathic preparation 2x/day, 10 minutes away from anything mouth.  This is to help me kick out the Epstein Barr Virus that’s being a pain in the butt right now and may be the main culprit behind my fatigue and sore throat.    

Balance D, 2 capsules, 2x/day until gone.  This is a vitamin D with some other stuff to help boost dopamine.  When you are lying around for months being sick, you get used to the idea that all you can do is lie around.  The increased dopamine will help me feel like I can try and do stuff!

Vitamin D Mulsion, 8 drops on tongue per day.  My doctor had this great explanation about why vitamin D needs to be delivered in an emulsified form, but I can’t remember why.  My vitamin D test came back super low, like 25.4 when ideal for a Lymie is 60-70!  I also had a vitamin D injection in my butt.  J

So overall, I definitely would say that naturopathic medicine has been working for me to eradicate Lyme.  Went from lying in bed all day not remembering where I was to reasonable energy to do things! 

If you want to see an LLND and live in Wisconsin, I can give you a couple of referrals - send me an email at  Otherwise, check out  Use the ‘Find a Doctor’ tab to find one in your area, then give the office a ring and ask they specialize in Lyme, if no one in the office does, they should know who in the area does. 

**Big, important thing to mention: not everyone who uses the title 'Naturopathic Doctor' has medical training!  All doctors at the website above are licensed (which means that they have been to years of real medical school and passed a board exam and the whole thing), but there are many, many more people who complete an online course and then use the title 'Naturopathic Doctor,' even without any medical training whatsoever - be careful of these posers.  These are the 'quacks' that some people associate with naturopathy.  The reason for this disparity is lack of legislation - in most of the states in the US, there is no regulation for Naturopathic Doctors, so anybody can say they are a doctor.  It's crazy and of course hurts the real Naturopathic Medical community because you have a bunch of delusional 'doctors' quite possibly causing harm in the name of Naturopathic Medicine.  (Did you know there are approximately 233 unlicensed, untrained people who are 'practicing naturopathic medicine' using that title 'Naturopathic Doctor' (ND) in the state of Wisconsin?  And only about 20 licensed naturopathic physicians!  Just crazy.)  Each state has a small group of real ND's who are trying to get this regulation in place for their state.  Wisconsin's is

Sunday, April 22, 2012

Faking it

As we learned from the Dr. Phil Show on Lyme Disease (aired on April 13, 2012), many people are under the impression that Lyme patients aren’t really sick.  That they’re faking it.  (After all, that’s what all the doctors are saying, so why not?)  That’s terrible, not only to leave sick patients untreated, but actually to accuse them of faking their symptoms.  It’s hard to think of a more tragic scenario in medicine than that. 

But let’s talk about another kind of faking it.  Not faking that you are sick, but faking that you aren’t.  What I mean is faking that you’re ok.  Faking that all is well when it’s not.  This also goes for anybody who’s not actually into something and have to appear to be.   That would be most Americans at work. That would be depressed people.  That would be grieving people.  That would be most of us, at probably more moments of our lives than we would care to admit.

As sick or injured people, probably the main reason we fake it is that we don’t want our loved ones to bear any more of the burden than necessary.  They are already forced into flexibility simply by living with us sickies.  We don’t want our loved ones to see us in pain and the last thing we need is to have them worry about us.  So what do we do?  We fake that we’re fine.  “Oh no, I’m ok, how are you?”  “I’m fine, no really.”  I hope it’s safe to say that we make it known when we really need care, like oh-my-gosh-I’m-gonna-die-if-I-don’t-eat-something-right-now, or if we have a serious episode where we need medical attention. 

If you are sick with Lyme and are faking feeling well for the sake of the people who love you, then good.  That means you’re getting better!  You’re no longer so sick that you don’t even care and it doesn’t even occur to you to put on a brave face.  You are no longer so sick that you can’t remember what day it is, even where you are, and you’re not so foggy-brained that you are simply in a daze in any given moment.

But still, why fake it?  What do we gain from pretending to be ok when we aren’t?  I suppose we gain some privacy.  If you don’t appear to have a problem, no one will ask you about it.  I suppose we gain a little respite from whatever we’re dealing with.  We get to be distracted by pretending we’re ok and working on other things instead of what’s really wrong.

I say faking it can be a really useful tool.   And after faking being ok for awhile, it becomes easier to actually feel ok. (Assuming you know that you are faking being ok and that you really aren’t ok.  And are dealing with it instead of just using the façade as a way to avoid dealing with it).  So go ahead.  Fake it ‘til you make it.  

For us sickies or grieving people or others who have big life events happen to them, we have a great reason to fake okayness.   But you ‘healthy’ people, be self-aware enough to ask yourself the tough question ‘Am I faking it day-to-day?  Why?  Am I getting what I truly want?  Do I even know what I truly want?’  I bet you will be at least a little surprised at your inner dialogue.  So give yourself a few minutes.  A little self-analysis can be a far more valuable experience than you might expect.  

All men should strive
to learn before they die
what they are running from, and to, and why.
~James Thurber

Friday, April 13, 2012

Heartbroken and angry

Some of you may have seen the Dr. Phil Show that aired where the second half was dealing with Lyme Disease.  While I am so happy that a mainstream outlet picked up at least some of the Lyme story, in the end, I just felt more heartbroken.  And angry.  Watch out, I get way more uppity in this post than in any of my other posts.  There's a time and place for anger I think.  And I guess it's here and now.

It breaks my heart that many sick people are dismissed, chastised, and ultimately left to suffer and die by their own doctors simply because a handful of doctors created this powerful rule that simply says these sick people are insane.

Sounds absolutely crazy, doesn’t it?  Deny care, say the patient is nuts.  That’s really it.  Any standard medical office you walk into will not be able to recognize Lyme Disease.  Furthermore, if you have received a 2-4 week course of antibiotics, you absolutely will be denied further care, even if you still suffer from symptoms.  All because there’s this all-powerful rule that almost all doctors follow when it comes to treating Lyme.  And it’s denying that chronic Lyme exists and it’s all in our heads.  How can it be denied that lengthy treatment works?  Look at all the people who have been in the battle for a long time and eventually get better vs. treating people for a really short amount of time, watching them still suffer, and then throw your hands up and proclaim ‘They’re cured!’….even when they are still dealing with all their symptoms!

There is a special place in hell for the IDSA guideline doctors who created these guidelines that hurt so many people, by denying them care.  These doctors have direct conflicts of interest with Lyme vaccine manufacturers, testing companies, and insurance companies and based their guidelines off of research conducted by themselves, while ignoring a huge body of research that completely contradicts their findings.  And surprise, surprise, the main result is that insurance companies can deny payment for care for chronic Lyme Disease.

How can this happen in America?  We all like to think that America is the best at everything – science, medicine, fairness, democracy.  How can we allow the rule-makers on medicine to get paid by companies who have a stake in the outcome of those rules?  It’s absolutely ridiculous.  Sure, it happens in Congress and with lots of public policy.  But how can we really allow this in medicine, medicine – where people suffer and die as a direct result?

How can you have positive lab test results for a disease and have a doctor tell you that you still don’t have that disease, or that the disease itself does not exist?!  How can it be that people are dying from a disease that ‘does not exist?’  Many people are dying, are wheelchair-bound, are blind, as a result of this completely preventable disease.  That’s the worst part.   If doctors knew how to recognize Lyme and knew how to treat it in its most early stages, people would not have to suffer.

How can we allow this?  How can we allow all this suffering?  So much suffering that doesn’t need to happen.  Wouldn’t need to happen if doctors acknowledged chronic Lyme exists and if they knew how to treat it.  How can we have doctors who swore an oath to do no harm not only leaving patients untreated, but blaming their sickness on them by saying it is the patient who has a psychological disorder?  How can we call it good medicine – to ignore your patients’ symptoms and tell them that they are psychotic?

I look forward to the dark day when enough people are sick and dying and disabled from Lyme that we say enough is enough.  Because clearly, it’s not enough people yet.  We haven’t waited until enough of us have amassed a loud enough voice. 

Disgusting.  Sad.  What a waste of human life, time, and suffering. 

That’s what gets me – you would never in a million years think you would have to quit school, work, and life as you know it all because you got a bug bite.  A stinkin’ bug bite.  I certainly never, ever thought this would happen to me, or that recovery would ever take this long (5 months and counting...and I'm a LUCKY one!  Most people get treatment for years!).

If you suspect you have Lyme Disease (or you do have Lyme Disease), it is absolutely imperative to be seen by a Lyme Literate Doctor, a doctor who acknowledges that chronic Lyme exists.  Otherwise, you will have the door slammed in your face and the book closed – on you.  Your doctor will not recognize the symptoms of Lyme and will not recognize that it even exists.  You’ll just be hitting yourself in the head with a hammer.  To find a Lyme Literate physician, go here:

To do something productive with your anger (hahaha), volunteer!  There are always Lyme Awareness events happening all around the country – walks (like Lace Up For Lyme in Milwaukee, Wisconsin on May 19, 2012!), talks, or write-in/call-in campaigns.  There's always a need for your energy to help in some way.  (And, there's probably a need in you to do something with that energy - might as well use it to help!)

“Victims of Lyme Disease are victimized twice by this illness.  First by the unending suffering attached with this illness and second by a healthcare system that ignores them, and sometimes doesn’t just ignore them, it mocks them, it ridicules them.”  
~ Dr. Jemsek, LLMD

I encourage you to watch this ‘Speak The Truth’ speech by Dr. Jemsek on youtube here:

Monday, April 9, 2012

Strong Like Bull

Hi!  It has been a while since I’ve done a post and I hope you’re all doing okay.  :0)  My doctor had grounded me from the computer and it’s taken me a while to figure out how to rejoin computerland.  I do have to say that my 2 weeks away from the internet with that nagging itch to check email or Facebook was truly invigorating.  I highly recommend it.  You’ll be amazed at how much more relaxed you are, after even a couple days.  I had no idea how out of balance things were getting.  Well, it was so easy to be so invested in ‘my new life’ on the internet – that’s how it is when you’re too sick to interact with people in real life.

I want to talk about mental strength.  Plenty of things happen in life (like Lyme Disease!) that rob you of your physical strength, but there’s a whole lot more that tries to rob you of your mental strength.  What I mean by mental strength really is will.  Will to live, drive to ‘succeed,’ that can-do, won’t-quit attitude; that intangible, invisible ‘moxy’ that separates the fighters from the quitters. 

Things like the death of a loved one, a debilitating diagnosis, some kind of survival situation are all things that test you just a bit.  They poke you a little bit, all the time, just to see how you’ll respond.  To see if you’ll quit.  Or see if you won’t.

I’ve been watching a lot of survival shows lately (Man, Woman, Wild; Out of the Wild; Dual Survival) and one common theme that all the survivors talk about is mental strength to get through it.  And the difference between living and dying is not giving up.  And not giving in to frustration when things don’t work out.  And really enjoying (and recognizing) all the little victories along the way – like finding food, water, or shelter.  Or, in our case, having a few pain-free hours, or being able to get through a social situation without saying anything too stupid, or being able to run an errand.  These are all little victories and so they should be treated as such.  (Yay, mini mental parties!)

I’ve learned about conditioning my mind, as cliché as it may sound, to accentuate the positive and eliminate the negative.  And it’s hard, no doubt, but does get easier, the more you do it. 

So the next time you get those yucky thoughts telling you that you can’t do it, or it’s impossible, or that things will never get better, do what you can to squash it.  It’s a little test to see how you’ll respond.  Be sure to choose to respond with a little attitude.  ‘Oh no you didn’t…’  J  And it takes time to remember that you don’t have to respond with despair or loathing (although it’s ok to respond that way sometimes, just not all the time).  And the reverse is true too, when things do go your way, exaggerate how important it is.  Beef it up.  Say to yourself, ‘way to go, champ!’ 

You’ll be flexing your mental biceps before you know it.  

Saturday, March 10, 2012

Do The Hustle

When the going gets tough, the tough get going - as in 'moving!'  I know that exercising is out of the question for my many Lymies – I mean, everything already hurts just sitting there, so of course it’s going to hurt to get moving.  And it does – but in my experience, only the first few minutes. 

I’ve had more sick days (my chronic Epstein Barr Virus is flaring up, so I’m feeling sick with a side of sick) lately, so I must admit I have not exercised in a few days.  But I did have a good stretch there when I exercised pretty frequently – and let me tell you what I mean by 'exercise': watching The Biggest Loser on Netflix, marching in place, with a can of soup in each hand in lieu of weights – just kind of waving my arms around.  Lifting the knees up when I could for a few steps, stepping side to side, doing maybe one real exercise – bicep curls maybe?  And just doing that (of course with the curtains closed so no one sees me flailing around) for 20 minutes until the egg timer dinged.  The first 5 minutes were pretty headachey and I had to slow down because of dizziness, but after that, it wasn’t bad at all.  I broke a bit of a sweat and got the blood moving around.  And I felt better for the whole rest of the day!  Maybe there’s something to this exercising thing.

For those who aren’t as sick, swimming is a great option – the water takes the weight off your joints, so you can move with less pain.  But at this point, any movement is good.  Even just standing up every hour.  I found this great article – written for non-Lymies – about why it’s bad to sit all day.  I shared it on my Water With Lyme Facebook page a while back and I’ll link to it here, because it is just so good!

And I know it’s part of Dr. Burrascano’s guidelines to exercise – in fact, he says that exercise is crucial to the Lyme eradication plan.  Dr. Burrascano says:  “Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.”

To read more about Dr. Burrascano and his ILADS-based guidelines, go here:

Plus, it's nearly spring!  So do the hustle everybody!  Get up!  It’s fun!  It’s free! ;)

Monday, March 5, 2012

March Madness Campaign

'Unless someone like you cares a whole awful lot,
nothing's going to get better.  It's not.'  ~ Dr. Seuss, The Lorax

Are you someone who cares a whole awful lot about the lack of proper treatment for Lyme sufferers?

Many, many Lyme sufferers are made bed-bound, wheelchair-bound, blind, or worse by this debilitating disease.  Perhaps the worst part is that many are ignored, mocked, and left to suffer and die by their own doctors who tell them chronic Lyme does not exist and that what they need is psychiatric help.  

Help us storm the gates of Congress at this outrage!  Help us demand the current IDSA guidelines on Lyme be overturned.  

Thank you to Lucretia Perilli, Alan Burdge, Lisa Hilton, Tammy Hildebrand, Timothy Grey and all involved in getting our messages much needed Congressional attention.  

Please 'Join' the Facebook Event page 'Lyme Disease: MARCH MADNESS CAMPAIGN' here:  

For those of you without Facebook, here is what it says:

MARCH MADNESS CAMPAIGN – It’s now March 2012 and we are angry and appalled (NOT crazy)!


PHASE 1: On January 4, 2012, the Infectious Diseases Society of America (IDSA) posted this question on their Facebook wall: What would you like to see from your society in the coming year?

Though the question was intended for the IDSA’s professional membership, people stricken with Lyme disease and their loved ones here in the US and abroad took notice, seeing it as one of the few opportunities that we’ve ever had to make our voices heard directly to the IDSA (and the world) regarding the outdated, inaccurate and corrupt IDSA Lyme disease Diagnostic & Treatment Guidelines.

PHASE 2: We continually gathered the comments and created a nearly 300 page document, took up a collection, and had 65 copies printed and bound to take directly to Washington, DC.

PHASE 3: On Tuesday February 21 and Wednesday February 22, Lyme patient activists hand-delivered these copies to US Congressional representatives on Capitol Hill in Washington, DC. Also, the document, in its original book format, is now being posted and shared throughout the internet.

PHASE 4 – MARCH MADNESS!: We need you to call the offices of the US Congressional members listed below. They all now have a copy of the document. The more members you call, the better. The more members you call, the more impact we will have.

Suggested talking points for your calls:

- Rescind the antiquated, inaccurate, and corrupt IDSA Lyme disease Guidelines.
- Push for the passing of Senate bill S 1381: Lyme and Tick‐Borne Disease Prevention,
Education, and Research Act of 2011
House bill HR 2557: To Provide For the Establishment of the Tick‐Borne Diseases Advisory Committee.
- Demand that doctors in every state are no longer threatened with license removal and other penalties for treating Lyme disease patients.
- Insist on better education of the entire medical community in every state regarding acute AND late-stage Lyme disease.
- Demand that a Congressional Briefing be held so that Lyme patients and our advocates get a fair chance to expose the decades-long corruption and special interests surrounding Lyme disease recognition, diagnosis and treatment.
- Be sure to tell your own personal Lyme story and the devastating impact that this illness has had on you and your loved ones.

Here is a link to the IDSA Comments document, which is entitled:

The Devastation of Lives and Lies:
Those with Lyme disease and related chronic infections respond to the
Infectious Diseases Society of America's (IDSA's)
request for comments.

January 4 through February 7, 2012:



If you would like to contact other US Congressional representatives who are not on the list below, please use these helpful links to quickly and easily find their contact info:



Harry Reid (D‐NV), Senate Majority Leader
(202) 224-3542

Mitch McConnell, (R‐ KY) Senate Minority Leader
(202) 224-2541

Eric Cantor (R‐VA), House Majority Leader
Virginia 7th District
(202) 225-2815

Nancy Pelosi (D‐CA), House Minority Leader
California 8th District
(202) 225-4965

John Boehner Speaker of the House
(202) 225-6205

Steny Hoyee Dem Whip
(202) 225-4131

John Larson Dem Caucus Chairman
(202) 225-2265

US Senate Committee on Health, Education, Labor & Pensions
Main Office:
(202) 224-5375

Tom Harkin (IA) *
(202) 224-3254

Barbara A. Mikulski (MD) *
(202) 224-4654

Patty Murray (WA) *
(202) 224-2621

Bernard Sanders (I) (VT)
(202) 224-5141

Robert P. Casey, Jr. (PA)
(202) 224-6324

Kay R. Hagan (NC)
(202) 224-6342

Al Franken (MN)
(202) 224-5641

Sheldon Whitehouse (RI)
(202) 224-2921

Richard Blumenthal (CT)
(202) 224-2823

Richard Burr (NC)
(202) 224-3154
Rand Paul (KY)
(202) 224-4343

Lisa Murkowski (AK)
(202) 224-6665

US Senate Committee on Appropriations
Democratic Subcommittee Members:

Tom Harkin (IA) *
(202) 224-3254

Senator Herb Kohl (WI)
(202) 224-5653

Senator Patty Murray (WA) *
(202) 224-2621

Senator Mary Landrieu (LA)
(202) 224-5824

Senator Jack Reed (RI)
(202) 224-4642

Senator Sherrod Brown (OH)
(202) 224-2315

Republican Subcommittee Members:
Senator Richard Shelby (Ranking) (AL)
(202) 224-5744

Senator Kay Bailey Hutchison (TX)
(202) 224-5922

Senator Ron Johnson (WI)
(202) 224-5323

Senator Lindsey Graham (SC)
(202) 224-5972

Additional Govt. Officials Concerned with Lyme Epidemic:
Scott Brown (R‐MA)
(202) 224-4543

Susan Collins (R‐ME)
(202) 224-2523

Tim Holden (D‐PA)
Pennsylvania 17th District
(202) 225-5546

Chris Gibson (R‐NY)
New York 20th District
(202) 225-5614

Kirsten Gillibrand (D‐NY)
(202) 224-4451

Frank Lautenberg (D‐NJ)
(202) 224-3224

Carl Levin (D-MI)
(202) 224-6221

Joseph Lieberman (I‐CT)
(202) 224-4041

Robert Menendez (D-NJ)
(202) 224-4744

Frank Pallone (D-NJ)
(202) 225-4671

Rand Paul (R-KY)
(202) 224-4343

Ron Paul (R-TX)
(202) 225-2831

Marco Rubio (R-FL)
(202) 224-3041

Charles E. Schumer (D‐NY)
(202) 224-6542

Christopher Smith (R‐NJ)
New Jersey 4th District
(202) 225-3765

Patrick Toomey (R-PA)
(202) 224-4254

Sheldon Whitehouse (D‐RI)
(202) 224-2921

Frank Wolf (R‐VA) - Virginia 10th District
(202) 225-5136

* Denotes members serving on multiple committees

Sunday, March 4, 2012

Here fishie, fishie, fishie

I talk a lot about eating fish for Lyme.  Here’s a little bit about why!  Fish is one of the highest quality proteins you can get – and it is pretty clean, not typically pumped so full of antibiotics, corn, and manure.   It is also a more alkaline option, helping reduce the acidity in your body’s environment.  The more acidic your insides, the more prone to pain it’s going to be. 

I know fish is more expensive, but any way you can, eat fish!  Sardines are a great, cheap option.  It really ought to be wild-caught (this means caught out in the wild, at sea).  The converse is farmed (this means raised off-shore in a huge netted cage and fed corn and antibiotics).  Many people are also concerned about mercury-levels in fish and for good reason.  Mercury is a heavy metal that accumulates in the body and can wreak havoc on your neurological system (sound familiar, Lymies?).   When it comes to mercury-free fish, there are two things to consider.  1) The smaller the fish, the better.  The rationale behind this is based on a process called biomagnification.  The higher you get up the food chain, the more concentrated the mercury becomes.  Example: sardines are eaten by the bigger halibut, who are eaten by the bigger tuna.  So that tuna has all the mercury in the sardine and in the halibut.  The other thing to consider, 2) the type of fish.  There are some fish species that are more likely to have higher levels of mercury in them.  Here is the list (it’s very pretty and short, even though the link to it isn’t):,r:0,s:0

So while it’s best to get fish that has the least amount of mercury, don’t forget that there are more sources of much higher exposure to mercury.  Consider that the World Health Organization says that the highest risk of mercury exposure to humans is dental amalgam (those silver-looking fillings for cavaties) "exposing the concerned population to mercury levels significantly exceeding those set for food and for air." Here's link to what the WHO has to say.

My take is that you should do your best to eat fish less contaminated by mercury, but not to fret too too much.  Especially if you have amalgam fillings (like me).  Those are exposing you to much more mercury on a much more consistent basis than fish.  To get your amalgam fillings removed, you need to find a dental office that specializes in this, as your regular dentist office probably doesn’t.  And they will probably tell you that dental amalgam is not a source of mercury exposure since that’s the American Dental Association’s stance.  (Hmmm, an American association telling you that you don’t have to worry, it’s not real?  Why, you don’t say…)

Now back to fish.  Aside from being an all around good protein, fish is also rich in fatty acids that your body needs for many functions – from immunity to good, healthy skin to brain function.  It’s just a high quality, nutrient-dense food, a much better option than beef or even chicken.  Plus, Jesus ate a lot of it.  So that’s gotta be a good thing – the food of the Gods then, right?  (Hehehe)

I’m not a huge fan of the taste of fish – and most people probably aren’t either.  The key is: lots of lemon juice, lots of pepper, and a new one I just discovered – lots of dill.  Or you can start with smoked fish – smoked fish is soooo yummy, probably because it doesn’t taste much like fish anymore.  Also, eat fish with a side dish you like – like steamed broccoli or something.   Having a solid side dish of veggies that you know you like is really good for the in-between bites of fish.  Sauteed onions is great, if you like onions – the taste is so strong, it will really help mask the fish taste. 

I wrote a haiku in honor of fish.

The scaly fish swims.
Cold, clear, crisp water flows fast.
Nature feeds me well.

(Hahhahaha…I’m just tickled with my haiku attempt.)

Monday, February 27, 2012

A rude awakening

I wasn’t sleeping well.  I woke up a few times in the night, but when I woke up with my hands raised up close to my neck and my neck taking over and thrashing my head back and forth, I was less than calm.    

Up until then, the only twitches I had were slight neck twitches – little ticks, really, just quick little ones brought on seemingly by stress.  And only a few a week.  But this was something right from Under Our Skin – the scenes where Mandy has some rather visually disturbing, intense neurological twitching. 

I have to say that it is the weirdest feeling to have your body move when you don’t want it to.  Kind of akin to a leg cramp when you’re swimming (less painful, but more movement - but that same kind of involuntary reaction), it’s that same feeling where you can’t help but watch as your body just moves on its own and sort of ‘takes over.’  Back and forth, back and forth, back and forth my head went, moving involuntarily and violently, without my consent.

Somehow, by some miracle, I fell right asleep again right after it stopped – luckily after only about 5 seconds.  When I awoke again, it was morning and I woke with a start, immediately remembering the involuntary thrashing that woke me in the night.  And I was pretty freaked out.  In fact, when I called my LLND to let her know, I was adamant that I was fa-reaked out.  Anxious thoughts started racing – am I going to have a seizure?  Am I going to have meningitis?  My lower back hurts, yea, what if I have meningitis?

It was a very trying time.  I just laid there and stared at my night stand while my mind just went on thinking and thinking.  But then I started to try hard to put more effort into reassuring thoughts.  I let my doctor know, if she’s concerned, she’ll call and tell me what to do.  I have been more stressed out lately, so that’s probably a big factor, yea, that was probably it.  And then I realized, I’m thinking up a storm.  Wait a minute – just breathe.  Don’t think.  Just lay here.  And b r e a t h e.  That helped quite a bit after just a few breaths.

I heard back from the doctor’s office and was able to get an appointment without much of a wait.  My doctor assured me that I was OK and it was caused by one of my coinfections (I can’t remember which one – either Bartonella or Babesia).  And we also discovered that I for sure have chronic Epstein Barr Virus, too – something about my tongue and throat indicated I’ve for sure got it.  I’m just a little package of diseases, aren’t I?  Ha ha ha.  We did a Meyer’s cocktail (a multivitamin injection!) and that was pretty cool.  I could taste it, smell it, and got a little flushed.  It was GREAT!  Also added some Cat’s Claw tincture to my arsenal as the anti-viral for the Epstein Barr. 

All in all, everything is great.  It was a wonderful lesson in keeping calm.  After all – the skill of keeping yourself calm must be used, like any other skill.  Use it or lose it!

It definitely was an eye-opener and a blatant reminder that something's temporarily got a hold of my body (as if I could forget).   

I am also profoundly lucky that I don’t encounter this neurological twitching stuff very often.  Many Lymies have seizures – many times a day.  I just can’t help but be completely amazed at just. How. Lucky. I. Am.