Thursday, August 28, 2014

So You Have A Friend or Family Member With Chronic Lyme Disease.....

A Guide to understanding their struggle

It's never easy to understand what another person is going through no matter the cause.  The saying holds true that you'll never truly know unless you walk a mile in their shoes.  In the case of Chronic Lyme Disease, there is much to be understood by not only those who know someone with it, but the person battling it as well.  Let it be known that this article is by no means a sympathetic appeal, but to give an honest voice of reason to the person battling Chronic Lyme Disease who can't always find the words to explain the complexities of their circumstances.

1. They're not crazy, they're not lazy, and it's not all in their head (pun intended)
This gravy train needs to stop.  There has to come a point where reality takes hold and reality is that a highly evolved bacteria with lethal intent courses through the blood of a person with Chronic Lyme Disease; literally dismantling the human body in a malicious manner over an extended period of time until death becomes.  That's reality.  All other claims are a true reflection of a person's inability to reason effectively.

2. They're not stupid.  They're under the influence
So you have the distinct pleasure of having a conversation with a person with Chronic Lyme Disease.  Did you notice that they may not appear to be as smart or possess the ability to articulate words much like they used to?  Were they not able to recall an obvious time or memory that you both shared?  Did they come to a complete stop in the middle of conveying a thought?  Don't worry, it's not them.  Within their brain, there exists a bacteria releasing deadly toxins that are directly interfering with the nerve relapses of their central nervous system.

3. They're on a special diet
You may have the intent of asking a person with Chronic Lyme Disease to join you for a meal.  Maybe even one that you cooked but not without your love, passion, and hard work.  Here is the deal.  If your meal or a place you intend to visit for food contains either gluten, dairy, or sugar, they can't eat it.  They're on a diet designed to deprive their body of food that directly feeds the bacteria within their blood and provide the essential nutrients their body needs to allow their immune system to take hold.  In a nut shell, they're trying to avoid adding more fuel to the fire here.  Yes, this includes alcohol.
But no one is denying the food is just as delicious as the bacteria in their body is deadly.

4. They're not ignoring you.  They're reeling
It's been a while since your friend or relative with Chronic Lyme Disease reached out to you.  Let's be honest here, living in a constant state of mental and physical pain, accompanied by eccentric, uncontrollable, and unprecedented symptoms, with a life that came crashing down isn't really something to show for;  especially when these truths are in their face at all times and can't be ignored.  A person with Chronic Lyme Disease can't talk about a party they went to last night, or the degree they're majoring in at college, or the job they're working, or simply what they plan to do this weekend.  You want to know what they're doing this weekend?  Here's what they're doing.  They're most likely laying in bed or on the couch, in a both physically and mentally ailing state, wondering time and time again why they happened to be the lucky person to contract such a life altering disease.  Their aspirations have come to a complete stand still as their life now almost 100% of the time revolves around restoring it.  Can't you just see how eager they are to talk about their life with you?  They have nothing to impress you with.

Also consider that in addition to the reeling, a person with Chronic Lyme Disease more than likely may be experiencing what is know as floating, and more than likely is exhausted in attempting to explain what they're going through to members of their own species when they themselves don't have all the answers.

5. Yes, they had to leave their job or drop out of college; or both
If a person with Chronic Lyme Disease can't even carry on a simple conversation, how does one expect them to delve into the untouched matters of the universe in their college course or the physical demands of a job.  Such societal demands require either an incredible amount of critical thought or physical energy, both of which a person with Chronic Lyme Disease lacks greatly.  Chronic stress is usually a constant factor in college and work and it directly compromises the immune system.  It's the last thing a person with Chronic Lyme Disease needs when they're aiming from every angle to remove a deadly bacterial infection.  The ultimatum to leave college and/or work, even though it may be temporary, is never taken lightly by the heart.

6. Stop saying "Well you look healthy to me".
Unless you have both microscopic and magnetic resonance imaging (MRI) for eyes, all you can see is the delusional exterior perfectly concealing the destruction that is currently in effect under the skin of a person with Chronic Lyme Disease.  A person doesn't need a visible wound to identify a debilitating physical and mental state of existence.  You'll never find a person with Chronic Lyme Disease whose eyes constantly fall out of their socket because of their condition.  Almost 100% of all the visible  evidence needed to determine how severe or ill a person with Chronic Lyme Disease is resides within their interior.  The debilitation can only be felt and truly understood by them.

7. Yes, they've been enduring it for many months or even years
Hopefully by now, you've made the rational decision to forget the ignorant notion that 3 weeks of antibiotics are all that is needed to remove Chronic Lyme Disease from the body.  If not, you're going to have trouble understanding this one.  From when the first symptom starts, until the day a person with Chronic Lyme Disease is in remission, many years may pass.  Why is this you ask?  Well it's very simple you see.  Between a combination of doctors who abide by outdated medical standards, ambiguous symptoms, inaccurate and deceptive testing, and when finally a diagnosis is clinically agreed upon because testing failed time and time again, treatment alone for Chronic Lyme Disease will take a minimum of a year because of the highly evolved complexities of the bacteria and possible coinfections.  The entire endeavor is no over night fix.  It is the ultimate test of patience.

8. Treatment makes them feel worse
The idea that treatment for Chronic Lyme Disease causes a person to feel worse is almost counter intuitive, but only to the unreasoned brain.  You see, every Lyme Disease treatment protocol must contain either a non bacteria-resisted antibiotic or a supplement of some kind that boosts the immune system in order to effectively eradicate the bacteria.  Got it?  Ok.  Now when the Lyme Disease bacteria is killed by either the immune system or an antibiotic, toxins are released from the outer member of the bacteria, causing a person with the infection to feel 100x worse than your worst hangover; or worst flu if you don't drink.  These endotoxins flood their internal organs and cause what is known as a herxheimer reaction within the body.  If a person with Chronic Lyme Disease kills off too many of the Lyme bacteria in their body at once, the herxheimer reaction can become so severe that it can actually kill them.

For the record, the severity of their herxheimer reaction is a direct cause and reflection of their mental and physical state that day.

9. They don't have all the answers
It's human nature to inquire about a friend or family member whom you know is not feeling well.  You yourself want to understand what is currently disrupting their health and if possible, help them along and expedite the healing process even if it's just by a few good words.  When confronting a person with Chronic Lyme Disease for answers, you will find yourself leaving the confrontation with less knowledge than you had expected to leave with.  The reason it that they don't have all the answers nor do they remember the few they have due to their faulty memory.  This also includes a timely explanation of why their life is not adhering to the exceptions you may have had for them.  They're currently struggling for truth and answers as they're not easy to find.  Try not to make them feel like they owe you more than the truth.

10. They're not bipolar
If you find yourself around a person with Chronic Lyme Disease often, you'll notice that their mood or condition changes quite frequently.  One day they're happy, feeling great or coming off quite intelligent, and the next day they're sad, depressed, irritable, or feeling physically horrible.  Though these continuous fluctuations in a person with Chronic Lyme Disease may lead you to believe there is something else wrong.  There isn't.  This is actually quite normal because their bodies have been biologically hijacked by a highly evolved bacteria with the intent to kill and cease their biological function.

This information pamphlet was taken from:

Tuesday, August 26, 2014

Lyme disease in Ontario

    .....Vanessa Farnsworth is a lyme disease survivor from Canada. Her story sounds very familiar. As a journalist, she was able to put her story into a readable book form. Check out her story - she speaks about it in the link below. It is very relevant for all of us living in Ontario....

    Friday, August 15, 2014

    Frets, Fears and Bloodwork Results

    I will attempt to outline our week:

    MONDAY: Visit with Dr P in Buffalo NY.  Bloodwork results revealed that my IgA antibody levels are low.  This is a condition a primary immune deficiency that occurs when individuals are unable to produce antibodies called immunoglobulin A.  Antibodies play an essential role in the body's immune system.  They detect and bind to foreign substances (like bacteria, viruses, fungi, or allergens) that enter the body.  This signals other immune cells to destroy the foreign substance.  The B-cells of patients with selective IgA deficiency are unable to switch from making IgM to IgA, so the amount of IgA produced is significantly reduced or absent.

    There are two possible explanations for the lack of IgA antibodies in my blood:

    1. This condition appears most often to be hereditary and makes the patient more susceptible to infection in the gastro-intestinal tract.  It occurs most frequently among people of European ancestry.  Researchers estimate that one out of 500-700 people from this group (ie. Ductch) develop the disorder.  It is often linked to autoimmune diseases such as Celiac (my sister Heidi was just diagnosed with Celiac this year), Lupus, Rheumatoid Arthritis (Lyme....) 
    2. The other explanation for a low IgA result in a person who has contracted Lyme is that Lyme Disease causes immune suppression.  The Lyme bacteria masks itself so that it is not recognized as a foreign invader and takes over the body.  Therefore bloodwork to test for antibodies and used to diagnose Lyme disease will often show that there are no antibodies present in the blood.  This produces a false negative result in people who actually HAVE Lyme Disease! When used as the ONLY diagnostic tool in patients suspected of having Lyme Disease many cases of infected people are missed. My Elisa antibody test was negative 2 years ago when I was tested in Canada using the currently accepted antibody test.

    According to the research I have done, people with IgA deficiencies that are accompanied by deficiencies in the IgG subclasses (I am also deficient in subclass 1 & 2) may be more susceptible to infection than others.  A lack in the IgA antibodies makes it very difficult to overcome infection in the gastrointestional/mouth areas, as indeed I have found out with my continuing struggle to control the Candida infection and my recurring battles with bladder infections over the past few years.

    IVIG Treatment:

    Doctor P told us that because of this deficiency in my immune system I will require Immunoglobulin (IVIG) treatment in order to be able to recover from Lyme Disease fully.  I would like to study IVIG to treat IgA deficiencies more fully before committing to this costly treatment as I have found conflicting information on the subject.  If indeed it is necessary for me to receive IVIG, I would have to find a doctor in Canada willing to treat me with IVIG for it to be covered by OHIP.  Otherwise the cost will be $15,000-$25,000 per treatment.....(requiring approximately 6-12 treatments).
    I had IVIG treatment done in 2012.  I had a severe reaction to the treatment and needed to stop it after the first round.  According to research I have done this would be expected in someone who has low IgA antibodies as IgA antibodies are seen as foreign when introduced through IVIG treatment.  According to Dr P, the reaction could also be explained as a severe Herx. reaction.  The adverse reaction could possibly be controlled through adequate allergy medication and anti-inflammatory medication before treatment. 

    THURSDAY: The Problem: Doctors in Canada do not generally support the treatment that I am currently receiving for Lyme Disease.  We experienced this on Thursday.... We were quite positive and encouraged with what we took as God's hand directing the fact that we had an appointment with the very person who had ordered the IVIG for me in 2012!  This appointment had been set a few months earlier already for this very Thursday! The problem is not that we saw God's hand in this - we see it in every detail of our lives, both good and bad.  The problem was that we thought this to mean that we would be able to have immediate access to IVIG treatment..... How we were let down! The neurologist told us in no uncertain terms that she is on the other side of the 'Lyme Debate' and does not support a diagnosis of Lyme disease or the treatment protocol we are following.  She also added severe warnings against all of the Lyme doctor 'hacks' out there.... She is more comfortable to contribute the huge improvements that I have made while being treated for Lyme Disease to a psychological manifestation of the power of positive thinking!  We agreed to disagree and parted ways - disappointed and discouraged.

    At this time I also developed a rash over my body which indicated an allergic reaction to one of the prescription medications that I am currently taking.  I was very bloated and experiencing diarrhea again.  An appointment was set for the afternoon to see the Doctor in Buffalo.  We hopped in our car.  It stubbornly refused to work.... It is almost humorous at this point (removed from that day) how frustrated we were becoming.  We loaded everything into Eric's work pickup and set off for a very uncomfortable 2 hr drive to the States....

    It was decided that I was 'toxic' and needed to flush my body.  I was sent home with IV bags to flush out my system and told to take a two day break from almost all medications before re-introducing them one by one until the rash and itchiness increased again.  I am enjoying the break from medication actually.  I look forward to a time when not taking medication every hour will be normal again....

    It was a very frustrating and discouraging day.  We struggled with our sinful natures bubbling to the surface in the form of arguments and anger.  For me this meant I needed to spend extra time with the Lord.  I was no longer feeling positive about treatment and was discouraged and overwhelmed with what potentially lies ahead before the disease is eradicated from my body.  I was also discouraged because my timetable included getting things in order here at home so that the children could be home when school starts.  I was urged by the doctor not to overdo things because it will set me back and prolong the healing process.  I will not be able to have all of the children home in two weeks.  We will need to adjust our 'plans'.

    A very helpful quote from the book "Running Scared" by Edward Welch:
    "All we can see with the naked eye is our own particular frets and fears, but there is something much bigger taking place.  Worries are a way that we doubt the King's presence and power.  Our doubts could come from our own stubborn commitment to the myth of personal autonomy, or they may come from satanic accusations that question God's generosity and our unworthiness.  Either way, anxiety and worry are spiritual wake-up calls that must be handled by spiritual means." 

    When we arrived home, tired, sore and cranky we were greeted by two friends who were busy installing a new dishwasher that they had purchased for us to make my life easier.  Now I was ashamed of myself.... We are so blessed. Thank-you! 

    Blessings seemed to come one after the other today.

    • Help from our church Family with setting me up in the hyperbaric chamber, amusing Damon etc.
    • A clean and tidy house, kitchen, bathrooms, clean laundry & bedsheets by the time I crawled out 2.5 hrs later - with the added bonus of baking in my freezer! (thank-you!)
    • A willing chauffeur (thank-you!) when I discovered last minute that our car wasn't in the driveway (I forgot it is currently under repair) when heading out for a doc appointment.
    • A positive visit with my new family doctor - she is willing to support me during treatment and will help however she can to take care of my body and do her part in advocating for me.  She is looking into setting up a visit with an immunologist so that we can explore any possible options in seeking to improve it my immune system. 
    • A delicious home-cooked prepared meal dropped off with heating instructions ready for my supper - according to my diet restrictions. (thank-you!)
    • The kids are home for the weekend!
    • I have improved physically - less bloating, more energy & my rash is almost gone...
    One of our lessons this week: 
    It is not possible to force God's Will to fit with our will.... 

    We remain confident that God has a hand in the blessing of this treatment and will continue the work that He has began, if it is His will, by whatever means He chooses.  We need to rest and trust in His care!

    "....your Father knows that you need these things.  But seek His kingdom, and these things will be added to you. Do not be afraid, little flock, for your Father has chosen gladly to give you the kingdom.…" Luke 12:30b-32

    ....Sharing stories of goblins, fairies , magical kingdoms and the Saucepan Man...Enid Blyton - one of the delights of our childhood....

    Monday, August 11, 2014

    Herxes and Hugs - Week 7

    I figured when I went to Buffalo on Thursday that the doc would probably want to do UV light therapy on my blood.  Indeed she did, and yes I could expect my toxin levels to rise as it boosts my immune system and kills bacteria in the blood.  Two syringes of blood are stolen from my body, added to a saline bag and run through a UV light machine and put back into my vein.  FYI according to the doctor my blood looks good (whatever that means..).  
    Since treatment on Thursday afternoon I have been weaker and sicker.  The doctor sent me home after light therapy and trialed me on a couple of bags of saline and some other concoction to flush my system should I experience a Herx reaction.  They did indeed pick me up after running them through on Saturday.  Unfortunately, although not as bad as Friday/Sat, I am still fatigued/nauseous/headache/pain/blocked ears etc. again today.  The good news: So far after the Herximer reaction has passed I have come out the other side of the few rough days feeling better than I did before it began! Something to look forward to - for sure! 
     I will talk to the doctor and try to convince her to allow me to reschedule my appointments for Tuesdays instead of Thursdays as we like to have the children home and I like to be well enough to attend church and enjoy time with my family/friends on the weekend.
     Damon slipped in the shower last week Friday night - requiring stitches in his chin.  So I suited up (my immune system is not functioning properly so I need to be very careful not to catch a virus) and we settled in Grimsby ER for the night.  Why do these things always happen on weekends?

    Because my immune system is not as it should be - I have to be very careful with the food I eat (see my rotation diet page for more info on what I can eat..) We introduced tomatoes and corn this week and I developed blisters in my throat.  I am assuming they are from the tomatoes as they can be quite acidic so we will take them off the list for now and carry on with the basic ingredients that my body can tolerate at this point...
    Our gorgeous children. So happy to have them home for the weekends, and so thankful for the care they are receiving with the Deboer & Bos families. THANK-YOU!! As I am noticing so much improvement in my physical function I am itching to have them home again. When I experience a herx and am overwhelmed with keeping my medication/feeding schedule/appointments under control I realize we are not ready yet for our energetic little ones to return home full-time.  I cannot give them the care they need at this point yet but I am trying to make things as streamlined and organized here as possible so that we can work towards managing that goal!
    In the meantime, they are well fed, happy, and content so we praise the Lord for that, and for the families who have given them a stable and loving short-term home....xox

    p.s. ...another FYI - when I went for a purposeful walk with my muscle stimulators on the other day I noticed that my gleut muscles are engaging when I walk - they have not done that voluntarily yet in the past three years.  It was amazing! I am so thankful for this progress - I am sure I was grinning the whole walk and kept my hands in my pockets so that I could feel them working...hehe...too much info?

     "All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God." 2 Cor 4:15 

    Monday, August 4, 2014

    6 weeks of treatment!

    I have been in treatment for six weeks now.  We are noticing a huge improvement in my function, strength, pain levels and endurance.  Thank-you Lord!

     After battling against a reaction to the medication and the subsequent weight loss, I have gotten used to taking my Babesia medication (or 'paint' as we call it around here...)
      Mepron is bright yellow in colour and used to treat the co-infection Babesia, which is a parasite that often accompanies Lyme and can cause some of the worst symptoms of Lyme Disease.
    It has taken me quite awhile to sort out which medications to take when, as they need to be spaced apart for several different reasons, and taken a few times daily.  The doctor adds more medication/supplements/nutritional support weekly so I just think I have a handle on it when I get thrown a bunch more to add to the mix! There have been weeks when I could not concentrate properly because of cognitive problems from the lyme flare-ups and it was very hard to sort my medication if someone was talking or I was distracted in any way.

    I have attached my medication schedule for those of you who are interested, as you can see, taking medication takes up most of my day.... It is a weird concept to be taking care of yourself and not much else all day, every day - it is not my favourite but I am looking at it as my 'job' for now...
     This is now my second week doing my medications at home.  I no longer have to go to America every day for treatment as I am well set up at home and stabilized now.
    I am getting quite handy with my nursing duties - the doctor even gets me to mix my own antibiotic IV which personally I think is a little bit of a dodgy idea - but I do my best and I am here to tell the story so I mustn't be stuffing up too much!

    During a Herximer Reaction (when the toxin levels rise in my body and the symptoms get much worse due to the dying off of the bacteria) I experience severe worsening of symptoms, pain in my legs, trouble breathing, extreme fatigue, nausea, blocked ears, phlem in my throat, headache, sweats....etc... As I write this I have not had a herximer for a few days.  I have a feeling the doctor will try to induce one with UV light therapy or some more medication when I go on Thursday because it is a good sign that my body is fighting the bacteria.  Not saying it is pleasant - but it helps to know the herx has a purpose.
    The hyperbaric chamber is a high pressure oxygen chamber - it delivers concentrated oxygen directly to my cells.  This improves healing and helps with boosting my energy/endurance levels.  I can feel the effects of being in the chamber and because I get such improvement after being in the chamber it is one of my favourite parts of treatment!  We had some trouble at the beginning with humidity/heat in the chamber and I could only last 1.5hrs before getting extremely claustrophobic. The cooler (attached) runs the air through ice before it goes into the chamber so it keeps the heat down from the pump.  We have also figured out that leaving the air conditioner on in the room greatly helps my comfort levels.  The doctor now has me going in the chamber 2X a day for 2hrs each time.  More the merrier I guess!
    I now have a hyperbaric chamber at home.  This is one of the reasons I don't have to go to the States for daily treatment - it is much more pleasant in my own environment - the people are friendly, the place is cozy and I am able to enjoy some sunshine in between treatments - in my own gorgeous backyard!  I have help daily with getting in and out of the chamber - volunteers from our church have been unbelievably accommodating - even with my constant re-working of my schedule!

    Although we have been disappointed with the level and quality of communication between doctor and patient, we are learning how to communicate effectively and we are very confident in Dr P's ability as a Lyme Literate Doctor.  We love the fact that she treats the body as a whole - combining nutritional support and homeopathic remedies to compensate for the toll that the Lyme, co-infections and treatment take on the body.

    It still amazes us how God directed us to Dr P's office and a diagnosis of Lyme disease.  We are not sure why He chose this time to open up a way for treatment but we are so thankful that I now have a new opportunity to regain my health! It is unbelievable how quickly things fell into place once we began to follow the Lyme trail - God has had a hand in it all.  Praise the Lord!
    "Because of the Lord’s great love we are not consumed,    for his compassions never fail.They are new every morning;    great is your faithfulness." Lam 3:22-23