Like Watching A Dog Chase Its Tail...

Okay, okay... so in my last post, I may have been just a little bit harsh towards the doctors who prescribe synthetically made anti-inflammatory steroids to Lyme patients (and for good reason!)... BUT, in order to level out the playing field a bit, let's take a look at how your own body's natural hormonal steroid may be contributing to the exacerbation of your infection...

Cortisol is a hormonal steroid produced by your adrenal glands (Note: this is not its only function.) Although this hormone, produced at normal levels, is essential to the body to maintain homeostasis, if it starts to go into "over-drive" and secrete abnormally high amounts over lengthy periods of time, it will suppress the immune-system and thus allow your Lyme infection to spread. 

When do these levels go into over-drive? - Well, in a person who has no other health maladies regarding adrenal function...it happens when you are experiencing high amounts of stress or anxiety.

Now, everybody knows of the infamous "fight-or flight" response. It is literally a life-saving mechanism that been hard-wired into the brain, and managed by the hypothalamus since the very evolution of man. Let's take a look at what is actually happening to your body when this response triggers, so that we can understand its purpose, and also understand why this is a BAD thing for Lyme patients.  

If you go back to prehistoric times, humans often found themselves in situations where their survival was, quite often, in serious peril (aka: Holy Shit - I'm being chased by a HUGE, carnivorous, MONSTER of an animal, who would absolutely like nothing more than to DEVOUR and have me for dinner!!!).

Back then, when those situations occurred, your body was VERY good to you. It noticed your distress and immediately started initiating a sequence of nerve-cell firings that directly sent signals to the adrenal glands, shouting at them to secrete large amounts of chemical agents such as cortisol, adrenaline, and norepinephrine directly into the bloodstream. 

Lol - the minute those chemicals reach your blood...BAM!! - You now can congratulate yourself on suddenly having "Super-Human" qualities...How?? - here's the list: 

• Your heart starts pounding to allow circulation to increase and get more energy to your muscles, enabling you to run or fight faster and harder than ever before. 
• An anatomical part of your eyes will literally contract and suddenly you become far-sighted, allowing you to visually see further away so that you can plan your route of escape more efficiently. 
• Endorphins are released and your perception of pain diminishes, so that if you ARE attacked, you will not be phased by it and will be able to continue fighting.
• Your impulses and decision making skills become lightning quick.
• ALL of your five senses become heightened and amplified to help you become acutely aware of your surroundings. 
• And finally, the "adrenaline rush" will make you stronger than ever before, so that if you do intend on "fighting" instead of "flighting"... at least your body gave you one HELL of shot!

So...in other words, having this amazing response embedded into our system was rather awesome back then. But even though times have changed drastically since those days, the hard-wiring in our brains for this response have not, and because of this, we often experience what we now refer to as "anxiety" and "panic attacks".


Often, and quite logically, Lyme patients have SEVERE anxiety and/or panic attack issues. My god, why wouldn't they?? - their central nervous system is literally being attacked by foreign invaders!! It's really not that big of a stretch to imagine that the body would consider that to be a rather HUGE threat...and what do we already know about what happens to the body when it feels "threatened"?? You guessed it! It tries to protect you by getting that damn flight or fight response going. So we have ourselves being tag-teamed in way...our anxiety stems from both our inner panic and alarm caused by the Lyme itself, AND the outer stress of what it "means" to HAVE Lyme in such a controversial and obscenely expensive climate...(Lucky Us!).

Now, from where I'm standing...I can't help but find this to be both entirely ironic and VERY amusing...

In our case, the very thing that was originally hard-wired into our systems to help SAVE us, has now become (Gasp!) our worst enemy. Why? - because those natural steroids and other "superhuman" chemicals that are constantly being released into our bodies as our infection progresses, weakens our immune system, and is now actually causing the disease to PROGRESS more...which, in turn, causes MORE chemicals, and MORE immune suppression, and on, and on, and on...Sigh...and THIS is why I liken the whole thing to "watching a damn dog chase its own tail"...It gets nowhere, never accomplishes what it meant to do, and in the process - exhausts itself.

However, before you start getting all upset about this (Sob - HOW could my body betray me like that!!!), please, be happy in knowing that this is ONE aspect of Lyme you CAN do something about! Talk to your doctor and figure out what will work best for YOU on controlling your anxiety while you are sick. Lol - please, just DO it!!


Sarah

Additional Note: Here's something you might not know about anxiety that may be of interest: 

While the mind is capable of acknowledging time in a linear fashion - as either the past, present or future, the body is NOT. It ONLY knows and comprehends the present. This is so important to understand, because if you're worrying about something that may happen in the future, or stressing over something that happened in the past, your body will take that thought, and literally interpret it as something that is happening RIGHT NOW; thus you unknowing just triggered your flight-or-flight response (to varying degrees), and now are wondering why on earth you feel anxious... 

If you don't have Lyme and are experiencing anxiety or panic attacks, but are a little leery about taking SSRI's for it, or anti-anxiety drugs, I would highly recommend (only because it helped me so much at one time in my life) purchasing the "anxiety and depression" program from The Midwest Center For Attacking Anxiety. If you're interested in checking it out, go to: www.midwestcenter.com and see for yourself. Hint: Buy the program on e-bay if you can...so much cheaper! All my best : )

Not Your Typical "Roid Rage"...

If you were to gather 100 Lymie Veterans and ask them, "What is the Number One rule regarding Lyme Disease and anti-inflammation medications?", here's what would happen:


At first you might hear some regretful sighs, angered mumblings, and painful groans, but then, once those memories have passed, they would all say aloud - in complete unison and perfect harmony (tap, tap, tap),


"Never, ever, ever (EVER!) allow your doctor to prescribe anti-inflammatory steroids!!"     



Unfortunately, I had to learn this very important fact the hard way...
You see, back in 2002, when I was initially searching for an answer as to why the joints along my spine had suddenly become the source of an extremely painful and debilitating experience, I had first thought to go see an orthopedic physician about it; logically assuming that something had "structurally" gone wrong in that area after having fallen in volleyball practice.


Although, all the MRI's, X-Rays, and tests showed no abnormal results, the doctor I saw knew that "for some reason" , I was in agony, and referred me to the office's Pain Management Specialist. 


So, for the next several days, I would visit him about three times a week and receive cortisone injections along the areas of my back and neck that were inflamed. 
That, however, only seemed to make my pain worsen and my symptoms progress to other areas of my body, so I rather quickly decided to stop with the injections. 


Because of this sudden progression, I then decided to see another doctor for a "second opinion", but ended up with the same answer...nothing "looked" wrong. The only difference with this guy was that he had the courtesy to ask me about my past medical history in detail.
As he was asking me questions about various medical conditions I had in the past, checking off no, no, no, one at a time, I'll never forget how he literally seemed to freeze for a split second and raise his head up at me with a VERY concerned look on his face when I happened to answer "Yes" to Lyme Disease. He then cocked his head to one side, asked if I had been treated, and when I said yes to that too, he relaxed a bit and kept on going down the list. So...no luck there.


I then went back to the original Orthopedic I had seen, and practically holding back tears, told him that I was getting worse and didn't have a CLUE what do to about it. The only response he had to say to that was, "Don't let a back problem (Wait - WHAT back problem?? You haven't even given me a diagnosis yet!!) become a head problem", and proceeded to prescribe me a weeks' worth of prednisone tablets. (Sure, let's go systemic...why not??)


I remember the first day I took those pills VERY clearly...I had decided to visit my sister for the night at Fairfield University, and although I had driven that same route to her school about twenty times prior to that day, I began to slowly feel an odd infectious-type pain start to creep down my spine, around my head, and suddenly, I had absolutely NO IDEA where I was...I become so disorientated while driving, that I actually had to call my sister to verbally get directions to her school.


As you can imagine, when I finally got there, she was very alarmed about the whole situation and forcefully took me to the ER the moment I arrived. We waited over two hours for some doctor to come in for two seconds and tell me that the prednisone pill I had taken had caused a "psychotic episode", and that I'd be fine as long as I stopped taking them. I tried desperately to tell him that this felt like an INFECTION, but he just waved the notion aside, and left to see his next patient.


Now, I know you're probably thinking, "Yes, but how does this story relate to Lyme Disease??" Well, I'd be happy to explain:


Inflammation is actually a result of your body's natural immune-response attempting to help "clean-up" or repair an injury you may have sustained, or to help fight off foreign substances such as bacteria and viruses that may have "infected" certain areas of the body. This is normally, although uncomfortable, a GOOD thing. Sometimes, however, doctors seem to think (and this may very well be true) that your immune-response is "overly doing it" and creating much more inflammation and pain then necessary. This is one reason why they would prescribe you an inflammation reducing steroid. (Another reason would be because of an auto-immune illness, which I'll get to in another post...)


Now, when you're prescribed a corticosteroid, its sole purpose and action is to prohibit your immune-response from activating and thus you experience less inflammation and...less pain. However, if the reason you are experiencing this is because you have an active foreign bacterial infection, what you really just did is completely remove the only line of defense within you that could help fight it (imagine that...). Thus, people who unknowingly have Lyme Disease and are taking steroids to reduce inflammation and pain in their joints are really just allowing the bacteria to spread more quickly, and also enabling the infection, along with your symptoms, to get WORSE.


The reason why seasoned lyme patients become SO enraged over this is actually very simple - they feel that their doctors unknowingly prescribed medications to them that not only made their condition worse, but also (if the steroids were taken over a long period of time) further damaged their already weakened immune systems and now, because of that, their overall prognosis sharply declines and THEY (not those doctors who were only following their specific protocols, and thus take no blame in the matter) are the only ones who suffer the retributions from it... Now, isn't that something to be just a little "ticked-off" about??


Well, I can't help but think so, and from my experience with doctors and the effects the drugs they've prescribed had on me in the past, the only thing for me to feel about the whole matter is perfectly summed up in a favorite quote of mine by Voltaire:

"Doctors prescribe medications of which they know little, to cure diseases of which they know less, in human being of whom they know nothing."

Sarah

The Fire, The Bitch, and That DAMN School's Code!

*Note: If you haven't read "Chapter 1: The Manhattan(ville) Project", on the "My Story" Page, please do so before reading the following. It directly relates to this particular post...

In the account, I expressed how enthusiastic I was about attending Manhattanville College in 2002, and for me, what changed all that was essentially due to an unfortunate jolt after falling on my sacral-iliac joint during volleyball practice. This may seem hard to believe, but fortunately it enables me to explain a bit more about the nature of the Lyme bacteria (spirochetes), and just how smart these sneaky little suckers can be...

You see, up until this moment in 2002, my immune system was strong enough to keep the bacteria in an "inactive" state. There's actually a "TED" video that I will put up below which scientifically proves that bacteria of the same species can chemically communicate with each other in a simultaneous way once in the body, and thus decide as a "whole" whether it is an opportunistic time to "attack and spread" and when it just isn't. 

They can do this by basically weighing and measuring how strong or weak your immune system and your overall health is at any given moment. If they decide that it is't in their best interest to become active, Lyme in particular will often go hide and become dormant deep with the joints until they decide otherwise... Here is the video:

From this perspective, I believe that the "jolt" I experienced when I fell actually woke up some of those sleeping little monsters that were hiding in that particular joint. But honestly, it's hard to believe that the following nightmare and progression of the infection  that occurred was just too quick for it to be labeled as the "sole factor".... and this is the part where I bring in another important aspect to consider when "considering" the factors of Lyme. It's the underlying current that was flowing all around me, at me, and in every direction while I was trying desperately to figure out what was happening to me. And that "current" was, unfortunately: STRESS!

You know, I absolutely love that part in the Disney movie "Anastasia" where that little bat says to Rasputin, "Stress, it's a keeler, you know". Lol - So true!! Stress has an amazing affect on the body and seriously wreaks havoc on the immune system. 

What, you may ask, was I so stressed about?? Well, besides trying to figure out what this seriously painful joint issue I was having (and getting NO answers), my roomate, Karina, was, I seriously believe, HAPPY to cause as much of it as possible.

We actually got along pretty well, that is, up until the day I accidentally caught our room on fire...Yes - FIRE! But before you judge, let me explain:

You see, after my "fall", I was still doing a bunch of different things: going to different doctors, trying to keep up with school, AND working part time on the weekends at Memorial Sloan Kettering (I was given a key so that I could go in when the office was closed and work on the Quality Assurance Reports I created on their computer). 

Well, one day while at work, my joint pain started to spread to different areas of my lower back and spine. I immediately started to feel anxious, utterly exhausted (usually this is an oxymoron...not so with Lyme), and completely disorientated. ALL I could think about was getting back to school so I could take a VERY hot shower (the hotter, the better - it briefly helped that damn pain) and then rest. 

I remember it being extremely hard for me to drive back to school in the state I was in, but once I got there, I lit a L'Occitane lavender scented candle that sat on the large windowsill next to my bed, and headed off to the shower. 

Afterwards, all I could think about was going to sleep, and practically collapsed onto my bed (towel still on and everything). In the process of this "collapse", I unfortunately managed to push back the feather comforter I had on it (amazingly enough) DIRECTLY over that wonderful candle I had just lit. 

Lol - even then, I was SO out of it, that it literally took me a few minutes to realize that I had just started a FIRE behind me. In fact, I only noticed it because I looked up and happened to see the terrified look on my roommate's face. I followed her gaze, saw that my comforter was, indeed, on fire, and immediately threw myself over it, trying desperately to put it out with my body and hands. 

This, by the way, actually worked, and in seconds it was over. In fact, the only remnants left behind that proved it even happened was my now crispy comforter, and the blisters I had accumulated on my body and hands. 

Luckily, the fire alarm never went off in my room, and because of that, no one would've ever found out - that is, unless of course, your roommate decides to tell the floor resident all about it, and also decides to tell them that her roommate has been acting VERY strangely lately and is convinced she's on drugs...

Well, I'm pretty sure you can imagine what happened next...later that evening all the residents in our dorm invaded my room, informed me that students were NOT allowed to have candles (who knew??), wrote me up for harboring one, and also informed me that the school's psychologist would like to have a word with me. At the time, I had no idea why the shrink wanted to talk to me, but later learned it was because "someone" had informed them about the possibility that I just might be a drug addict. This leads me to another tid-bit I'd like to share about Lyme Disease:

• It is completely understandable why someone watching the behavior of a person who has Lyme Disease would assume they were on drugs. Jeez...experiencing the illness is often like being on... "One big...ACID TRIP!!" (The excerpt said by Nicholas Cage in the movie "The Family Man" :) 

This however is usually not the case, and accusing someone experiencing the symptoms of Lyme does nothing but cause more harm and stress. *Remember, we DO have short-term memory issues, so if someone TELLS me I'm on drugs, the first thought that will enter my mind is: 

"My God! Maybe I AM on drugs, but honestly... I DON'T KNOW - This would all be SO much easier if I could just remember What the Fuck happened today!...WAIT - here's a thought...why don't you test me, that way, we can BOTH find out!"

Okay - back to my story... 
Unfortunately, the "raid squad" didn't confiscate my candle, so I logically did what any other normal person would do... I bought one of those ceramic rings that hold essential oils and are diffused by placing it over a lightbulb (I DID love lavender, and it was "firesafe".) I also decided that it would not be in my best interest to throw the candle out - L'Occitane IS a very expensive store!, and decidedly tossed it in the bottom drawer of my dresser for future use outside of school.


What I didn't know then, was that the fire I caused, however small, had made me rather infamous at the college, and because of this, my room was invaded AGAIN two weeks later to make sure that I was no longer a "threat to society". 


It doesn't really take a genius to figure out what happened next... The fire squad found my unlit, unused candle, figured I hadn't learned my lesson, and politely told me that I was no longer allowed to live on campus.


Immediately, I ran over to see a new friend of mine - the school psychologist, who, after speaking with me a week prior, decided that I was indeed NOT on drugs, and who became just as concerned as I was about my deteriorating health.

I planned on telling her everything, but the second I got there, a huge wave of nausea fell over me, and before I could get a word out, I promptly vomited all over her office floor. 

Afterwards, we talked for awhile, and she was somehow able to convince the college to let me stay, but unfortunately, by that time, the stress of EVERYTHING that was happening had caused me to get so sick that I was no longer able to stay. And, as they say, "that was that" with my college career at Manhattanville.


Sarah

Food matters...

I recently put up a new page on this site entitled "Healing Recipes for Lymies", and felt the need to expand on the topic of food, and how crucial it is to have a VERY specific diet while you are sick. 


That diet is widely known as the "pH Diet" or "Alkaline Diet" (I'm pretty sure most of you have already heard of this...) If you do not know what I'm talking about, I would highly recommend you buy and read the updated and revised edition of the book, "The pH Miracle, by Dr. Robert and Shelley Young". It not only explains why you need to follow this diet, but offers a step by step guide on how to make the transition, AND it also provides a section chock full of recipes to get you started.


If you would like to buy the book on Amazon, here is a quick link:





On the flip side, if you'd prefer the "cliff notes" version, here's the premise and basic idea:

• "pH" used in this context refers to how "acidic" or "alkaline" (another term for "base or basic" used in chemistry) your body is. The symbols "+" mean alkaline, and "-" mean acidic.
• Your body goes to GREAT lengths to maintain a steady and slightly alkaline blood pH level of 7.4. This is because ALL metabolic processes and functions of the body depend on it in order to stay healthy.
• The foods you ingest metabolize in the body and, depending on what you eat, can either create a more acidic or alkaline environment. The higher the acidity of the food you eat, the more energy your body has to spend to normalize your pH level again. If done on continuous basis, your body simply cannot keep up, becomes more acidic than it should be, and you slowly start to get sick.
• Harmful bacteria, parasites, fungi, etc THRIVE and depend on an acidic environment to survive and multiply. Um - Lyme IS considered to be a VERY harmful bacteria...do I really need to say anymore??

Like any and all life changing events, the first six weeks will be the hardest. I remember there being times where the cravings I had for the foods that were "off limits" where SO bad, that I actually had to grab onto something grounded to prevent me from going out and getting it! (*Note: This tactic has about a 50% success rate, but it's worth a try : ) 
Just keep at it - it will pass; the cravings you are experiencing are actually those "harmful bacterias" begging for food! Once they die from starvation, you will no longer experience these cravings - in fact, you will even wonder why you would ever want to eat those things in the first place.


*Note: I consider this diet to be a "Transition in Bodily Awareness". This means that you will find yourself going from, "I'm eating this because it tastes good, comforts and distracts me from my stressful day, but man, do I feel like shit and wish I could go to sleep afterwards" to, (eventually), "I'm eating this because it tastes good, is good for my body, makes makes me feel less stressful about my day and, my god!, I can't believe how much energy and mental clarity I have afterwards!"


Below is a very helpful chart and can be used as a rough guideline to what you can and cannot eat. The diet says that 80% of what you eat should be alkaline (left side of chart), 20% can be slightly acidic (middle part of chart), and that you should try to avoid eating anything that is highly acidic (right side of chart). 

Now, of course, the pH level of the body is just one of many factors that determine overall health and vitality. For example, the diet calls for a vegetarian diet, and besides the moral issues surrounding eating meant and dairy, I cannot say that it is something that works for everyone.


 I'm aware that the book "Eat Right for your Blood Type" is only a theory, but my blood type is O+, and because of that, the book adamantly calls for meat. Why? Because "O" stands for "oldest", meaning that I have the oldest blood type, the blood type of the "hunters and gatherers", and therefore would thrive on a diet that is similar to what they would eat. 


Unfortunately, I have tried to be a vegetarian, but really do feel better when I'm not. The compromise: I only eat Grass fed, Free Range, Anti-biotic Free meats about four times a month. 


Let me give you another example. About 80% of the population has had a cold sore at some point in their life. If you have a strong immune system you usually don't have to worry about this. But Lymies immune systems are often very weak...why am I mentioning this? The above chart says that almonds are "awesome" for you, but what you may not know is that almonds contain a huge amount of the amino acid L-Arganine, and this particular amino acid triggers cold sores, shingles or any other type of virus in the herpes family in people who have weakened immune systems. You do not want to activate a latent virus while trying to heal from a bacterial infection! The Compromise: Either avoid almonds or counteract the L-Arganine effects by eating foods or taking supplements that have Lysine (another amino acid) in them.


Before I end this post, let me give you some other tips I've learned  that I hope you find helpful if you plan on making this transition:

1. Ezekiel Brand breads, wraps, pastas, and cereals are an amazing substitution for the carbs you are not allowed to eat, but make you feel more "grounded", and can usually be found in the freezer section of your local grocery store. If it's not there try Trader Joe's, Mrs. Green's, or Whole Foods - they will definitely carry it.
2. Unless the only reason you are eating vegetables is to increase bowel movements, do not cook them! Raw vegetables are the best, but if you can't tolerate it, learn the art of steaming. You'll know when to stop steaming when the vegetables turn bright green. This will insure that all of the many wonderful qualities and nutrients the vegetables contain (the very reason your eating them!) will be intact when you consume them. Also, juicing and creating smoothies with veggies are awesome! If you can't stand the taste of the smoothies you create, add Emergen-C packets to them. Bottom Line: Invest in a blender and juicer...
3. Water, Water, Water! Everyone knows to drink water, but I have two suggestions: at the very least, get a Britta filter - you can literally taste the difference...and, try adding fresh lemon juice and a dash of cayenne to your water. Lemon acts as an astringent for your cells and cayenne promotes increased circulation and lymphatic drainage.   
4. Although called for, please do not eat soy products (with the exception of organic edamame). Nowadays, all soy beans grown in mass production are genetically modified and harmful to your body. Don't believe me? Watch the documentary, "Food, Inc".
5. Still not convinced you should stop drinking coffee?? Well...besides being extremely acidic, coffee wears down the lining of your intestinal wall, overworks your nervous system by putting you into a constant "fight or flight" state, wears out your already "stressed out" adrenal glands, and after drinking one cup of coffee, it takes two cups of water just to get back to the level of hydration you were at before you had your cup of coffee in the first place!
6. Can't go without chocolate? Neither can I...go to your natural food store and buy the 100% sugar free Mayan Cocoa Powder "superfood". (It is not the same thing you will find in your grocery store's baking section!) It is organic, and is processed at a very low temperature which leaves all of it's amazing nutrient, mineral, and anti-oxidant properties intact. I usually warm it on the stove with unsweetened rice milk as my own version of "hot cocoa". Also, ever hear the saying that chocolate induces the same chemical affects in the brain as having sex? They're right! Did you know that chocolate and cocaine actually come from the same source...they BOTH have amazing dopamine-enhancing affects on the brain, only chocolate isn't as intense, and doesn't share the same extremely harmful consequences as using cocaine, nor does it share its pitfalls after you stop using it...and (of course) - it's legal! 
7. I'm sure you've all heard of the new fad of the decade...three meals a day is out, and five small meals per day is in. I totally support this idea and recommend you try it as well. However, while doing this, please remember the following two things. Try not to eat anything after 7:00pm...your body has a TON of things to do while you are asleep and adding digestion to that list is a BIG no no. The perk you'll get from doing this? - you will lose a lot of excess weight. The other thing...when you do eat fruits, eat them apart from anything else. Your body has its own agenda on which foods it attempts to digest first... The rule of thumb is this: Whichever food takes the longest for your body to break down, that will be the one it goes for first. Fruit is VERY simple to digest, and if you eat it after consuming carbs and some meat, it will literally sit there for hours and start to ferment until your body is able to get to it.

Okay!! That's about it...long post - hope it makes a difference : )

Sarah

How to Tell a Nine Year Story...

As I've already mentioned, one of the main goals of this blog is to raise awareness of just how devastatingly life-altering and downright bizarre this disease can become if not treated in its early stages. 


I've recently set up a new page entitled "My Story" where I intend to relay my personal experience with this disease. Due to the length of the story, this must be done in segments...lol - I fear that putting it all up at once may be quite overwhelming...there's just so much to ingest!


There are, however, many benefits for telling a story in parts - particularly if you're blogging about it. One of those benefits is to add addendum's in the posts following each segment of the story I'm telling. 


In fact, I think it's a perfect setup!! You see, I want readers to look at my story and be able to relate to it - I want to humanize it in a way that makes it understandable to both Lyme sufferers and non-suffers alike. BUT, I also want to be able to provide an area where the phenomena of a story like this can be described in medical terms, and the posts I intend to create after each segment will do just that.


For example: If you've seen the "prologue" to my story, you already know that it was extremely unfortunate that the doctor I saw when I first contracted this illness, mistakenly took my symptoms as a virus and NOT Lyme Disease. Of course you'll say - but your test for Lyme came back negative the first time...well, it's now a known fact that testing for Lyme is often unreliable, and when you initially contract the infection, it may take several weeks before a Western Blot test comes back positive. Oh...but how precious those several weeks could have been in stopping the progression of the disease!


I remember having a conversation with a cousin of mine in late 2008 and was surprised to hear that, after experiencing the same symptoms I had initially presented with, the doctor he went to see immediately put him on anti-biotics BEFORE taking any tests - just IN CASE it was Lyme.


 Things have come along way since 1998, and you can't imagine how much pain and suffering could have been spared, had my doctor had the foresight to do just that...


When it comes to this disease, "Stages" are critical in determining the ultimate prognosis. For those of you who don't know what I'm referring to here is a rough outline of the progression of this illness in its stages. There are SO many variations of this outline...please forgive me if I miss a symptom or two...


Note: The later the stage you catch it at, the worse the prognosis becomes. Also, you will find that the presentation of Late Stage lyme disease is SO unbelievably different than its earlier manifestations, that it will literally look like an altogether different disease...


Stage One: Early, Localized (the disease hasn't spread to other  areas of the body yet.) *This stage is often mistaken as a flu or virus and will most often resolve itself. This is NOT a good thing...you WILL develop the second stage if not treated at this time. Most common symptoms include:

• A Bulls-Eye Rash at location of tick bite. **Less than 40% of people develop any rash at all...if you are lucky enough to find either the tick, the rash (or both), do the following: Take a picture of the rash, CAREFULLY remove the tick with tweezers (make sure to pull gently and steadily in the opposite direction of where the head is pointing towards - You need to get the entire tick out...it is VERY important NOT to leave the head embedded in the skin) , save it and bring it with you to the Dr.'s office. 
• Flu-like symptoms: lethargy, headache, stiff neck, fever, chills, muscle and joint pain, swollen lymph nodes.

If you catch it at this point and are given 2-4 weeks of doxycycline (I would go with four...but make sure you take pro-biotics with it!), your prognosis should be great. This is probably the only time I will agree with Western Medicine and say that the 2-4 weeks of anti-biotics will CURE you!


Stage Two: Disseminated Infection (you didn't catch it at the first stage or receive treatment, and now the disease has spread throughout your body.) Presenting 1-4 months after initial infection. Most common symptoms may include:

• Bulls Eye Rashes throughout entire body
• Vomiting, Nausea
• Enlarged Spleen
• Severe, recurring headaches
• Pain, weakness, or numbness in arms and legs
• Dizziness
• Insomnia
• Extreme Fatigue/Lethargy
• Beginning of CNS involvement, early neurological and psychological manifestations may appear (Ex. Anxiety, peripheral neuralgia, OCD, extreme irritability, mood swings etc)
• Photosensitivity/Photophobia (When "daylight" becomes your worst enemy : )
• Muscle Aches
• Night Sweats
• Hellish Nightmares (seriously...)
• Migrating Joint Pain
• Rib/Chest Soreness
• Joint Swelling
• Heart Issues may develop (Ex. Palpitations)
• Bell's Palsy (Paralysis on either side of face, muscles on affected side will become flaccid and droop)
• Poor memory and reduced concentration
• Conjunctivitis (Pink Eye)

Western Medicine continues to imply that even at this stage, 2-4 weeks of doxycycline will cure you. I do not agree...and - that's pretty much all I have to say about the matter. I do, however, believe that even at this point, chances for a complete recovery are highly possible with the APPROPRIATE treatment.

Stage Three: Late, Persistent, Chronic Infection (The infection is basically EVERYWHERE at this point. Even with the most aggressive IV therapies and anti-biotic treatments, patients will often relapse once therapy is discontinued. The symptoms of this stage vary greatly from person to person - every "body" is different, each having their own genetic pre-dispositional weaknesses, and this, in turn will reflect in what areas of that particular body - whether it be musculoskeletal, neurological or psychiatrical will be affected the most. Some of the most severe symptoms may include:

• Seizures (Non-Epileptic)
• Dementia
• Psychosis
• Suicidal/Homocidal Ideation
• Damage to Nerves, Joints and Brain
• Encephalitis, Meningitis
• Sensory Overload
• Misproprioception 
• Impaired Speech
• Lyme induced ALS
• Convulsions
• Paralysis
• Tremors
• Stroke
• Heart Attack

Um...I think you get the idea (Bad! Bad! Bad!). Successful treatment at this stage is basically not very optimistic, and most people require ongoing therapy to be able to function even at minimum capacity. 

There is hope however, it will be literally the fight of your life, but if you put in the time, have the right resources and support (both financially and emotionally), find the treatment that works for YOU, and stick with it through "Hell or High Water"...one day, you might just find yourself feeling better, one day, you might just win.

Sarah

Ummm - Yeah...That's about right. ; ) Love this Cartoon!!!

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A Taste of the Lyme Controversy

I had mentioned that one of the intentions of this blog is to "help people who aren't affected by this disease understand what an extremely difficult climate it is to be in, and why so many people just aren't getting better", and tonight, the purpose of this post is to do just that. 

The "Under our Skin" documentary is a world-renowned, highly recognized and celebrated, award-winning, detailed account of the ongoing controversy regarding the treatment of Late-Stage Lyme Disease. 

If you have Lyme, stop reading - you already know about this documentary. If you don't, and want to understand why being a patient with this disease is such an extremely difficult, frustrating, and downright sickening environment to be caught in the middle of - watch the trailer and see for yourself...  

It took a LONG time for this documentary to become available to the public without having to go see it at theaters in remote areas. However, things have changed recently, and it is now readily available to watch (in its entirety) either online through several medias or by DVD rental. If you are interested in understanding more about the controversy, below is a list of places I know of where you can either rent, stream or purchase it:

•  Rent it on iTunes for $2.99.
• Netflix.com
• Blockbuster.com
• Amazon.com video on demand or for purchase.
• Stream it for free at http://www.1channel.ch/ (Just type in "Under Our Skin" in the movie search bar.)
•  www.underourskin.com (for purchasing DVD only)

Also, if you would prefer to read about it instead, I would highly recommend buying or borrowing a copy of "Cure Unknown" by Pamela Weintraub. 

Both are extremely informative and will tell you basically everything there is to know about living in the "World of Lyme". If after watching the documentary or reading the book, you find yourself feeling like a "Stranger in a Strange Land" then I can happily say that I did my job tonight : ) I do believe that the controversy that is literally embedded within this disease is a very important aspect to be aware of, but I would also like to forewarn you: you are about to enter treacherous waters... 

Try and tread carefully through it - maintain some kind of objectivity while watching or reading this material. Otherwise, I sadly fear it will induce nothing but anger and feelings of hopelessness for our community (which is NOT something I want to advocate or promote.) 

I only offer it to you as a reality you may not know exists, and as source of knowledge to create a foundation of understanding upon. 

Sarah

Sensory Overload and the Origins of The Gratitude Gallery

The Universe is full of surprises - it often takes you down roads you never imagined traveling, and for me, painting has been one of them. What I now call "The Gratitude Gallery" had a very unexpected and unintended beginning that I'd like to tell you about...

In early March of this year, I decided to attend a Reiki workshop in NYC for the weekend and needed a place to crash for the duration of it. Luckily, a dear friend of mine from high school lived only 5 blocks away from where the class was being held, and agreed to take me in.

Now, before I tell you about the origins of my Gratitude Gallery, I'd like mention that any Lymie who experiences "sensory overload" as an unfortunate neurological symptom of Late Stage Lyme Disease will tell you that staying in a city (especially New York!) is NOT exactly an ideal circumstance to be in. Here's why:

You see, most people are completely unaware and therefore cannot appreciate just how magnificent the brain is, particularly in its ability to filter out unimportant information about the environment you are in at any given second. 

It's all quite easy to understand if you imagine the brain as a very efficient, highly intelligent computer that is able to take all of the millions upon millions of GB's of data that is thrown its way every single moment of the day, and automatically (effortlessly even) determine what part of that information is important for you to be consciously aware of, and what part just isn't. It is only because of this ability that you are able to concentrate and focus on any task you ever attempt to perform - pretty cool, right?...

Now. Imagine that something gets into that computer and decides to turn that data-filtering mechanism OFF. You would now find yourself completely paralyzed and overwhelmed by your surroundings, being constantly bombarded by information that is simply too much for your brain-computer to process. This is Sensory Overload.

When this happens a couple of key self-preserving cautionary steps are taken by your loving brain in a vain attempt to prevent a total "system meltdown". First, you may start to feel a "tightening" pressure that pulls down from the inside of your head and spine. In medical terms it feels like your dura-mater and meninges start to constrict, tighten and twist inward...um - this is painful. 


Immediately following that, (or maybe even as a result of that) your brain will try to limit the amount of data being thrown at it by literally constricting your consciousness and therefore, your ability to be aware of (to "tune" into and process) anything that is beyond a ten-inch radius from where you stand. You simply WILL NOT be able to integrate anything else into your surroundings. I once heard someone describe this by saying, "I feel like the world literally ends 10 inches from my face". 

I used to try and describe it to people by saying that everything has become "theoretical" or "intangible". For example, let's take something that can only be theoretical in our minds and use it as a metaphor: The Milky Way Galaxy (What a marvelous creation!). 


Why can we perceive this very real thing only in theory? For a lot of reasons: because we don't need to integrate it into our surroundings to survive, because the enormity of it is simply not tangible; it's not something we can literally experience, touch and comprehend with our minds (lol - it's OUT THERE...). 

Now, what would you say if I told you I had that same feeling when looking at a chair that was five feet from me? - This is the best way I know how to relay to you what a constriction in consciousness from sensory overload does to my level of awareness.

Note: If this is happening to you please kindly turn around and go back home, you are not going to be able to come out and play today : ) 

Okay, so red alarms are going off in your head, something is definitely WRONG, but you don't heed my advice and go rest, you persevere and attempt battle through it. Unfortunately, I've made this incredibly stupid mistake on numerous occasions and therefore can tell you exactly what the next step in this grueling process will be: your computer-brain will start to short circuit. Ah...and this is where all the fun really begins...

When I imagine a real computer short-circuiting, images of sputtering sparks from melting electrical wires and circuits flying everywhere enter my mind, and ironically, this is not very far off to what actually happens to your body. 

You may start to stutter, become confused, disorientated, not understand where you are or where you need to go, your movements may become awkward, jolting, and stiff, your limbs may jerk or tremor, you might start convulsing or become paralyzed, your hands might curl inwards and become stuck like that, or - you might even start to seize... 

Since 2007 I have experienced this bewildering aspect of Neuro-Lyme (to varying degrees); needless to say - I've learned it's simply easier to not venture out too much.  

Okay! - back to my story. Because of this neurological condition of mine, during that weekend in NYC with my friend, Charles, I would go to class, practically run back to his apartment, sleep for a couple of hours and then have absolutely nothing to do for the next five hours. Charles is never in his apartment - he is always working, sometimes coming home way after midnight - so I had a LOT of alone time. 

When I first got there I remember him telling me three things: make yourself at home (thanks luv :), I work very late hours, and why don't you try and paint if you can? (he did have all the supplies)...

Having NEVER painted before, one night I decided to give it a try. Of course I was awkward and clumsy and wasted too much paint, but I LOVED it! How relaxing, how rewarding, how forgiving it was - if I didn't like what I just did, I could just paint over it! 
So I ended up with a small abstract blast of colors and swirls that I felt extremely satisfied with and overly proud of. So proud, in fact, that I simply had to put it up on facebook for display. I had accomplished something, CREATED something, and wanted to share. That - I thought would be the end of it.

A couple days later I received a message from a beloved Uncle of mine in Switzerland who asked me if I would be willing to try and paint a particular song for him that has haunted him for years. I totally understood what he meant - music evokes so much emotion, but emotions are blind and can only be felt... he wanted to actually see what he was feeling. I was totally game for it, downloaded the song, got my supplies and went to work. 

In the end, I think he felt deeply moved by what I had created, and thought that I should continue painting. As a "thank you" he sent me enough canvases, supplies, paints, and brushes that I was convinced could last a me lifetime.


At the same time I received these supplies, I was also selling a bunch of stuff on e-bay that some friends and family had sent me to help pay for my ongoing medical expenses. My disability was and still is in the processing phase, and I had been so desperate and in despair - not knowing how I could come up with the money I needed to continue my treatment, that I couldn't help but feel overcome with gratitude towards the people who cared enough to send me things to sell. I kept thinking to myself how can I repay such wonderful acts of kindness?? 


Turns out the answer was right in front of me, all around my room in fact. I ended up repaying them with paintings - paintings that were unique to them, that held their essence, and my gratitude. I wanted them to be able to look at it everyday and know that what they had done had saved me, I wanted them to look at it and remember that that kind of kindness could never be forgotten. 
   
Sarah