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: http://www.waterwithlyme.blogspot.com/2012/02/nitty-gritty-my-lyme-protocol.html)

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.  http://www.pacificcollege.edu/acupuncture-massage-news/acupuncture-massage-publications/om-newspaper/116-summer-2011/1011-treating-chronic-inflammatory-diseases-with-chinese-herbs-gu-syndrome-in-modern-clinical-practice-.html

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 waterwithlyme@gmail.com.  Otherwise, check out www.naturopathic.org.  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 www.wisconsin-nd.org.

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

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:  http://www.lymedisease.org/resources/referrals.html

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:  http://www.youtube.com/watch?v=V-lHDA863TM

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.