These past few week have been a bit of an unexpected landslide, as admittedly the new birth control has been angering my cysts, intestines, and neuropathic pain. The pain it's caused, has lit me up like a christmas tree with varying levels of pain switching as though it were on a timer. The most bothersome symptom is that I keep getting electric jolts of pain in my hand and end up dropping whatever I was holding, i.e. cell phone, fork full of food, mug I liked...etc. I called the Dr.'s office and they told me it's too vital to the surgery to go off of it would be jeopardizing the surgery that's already been moved up to December 20th. So I am stalemated by drugs that cause wicked side-effects without other options. The Cysts seem to be trying very hard to fight off the BC pill as it tries to shrink them, throughout my intestines a war is being battled, and I am in turn, in the bathroom enough times to be Clark Kent transformed into superman three times over. The exhaustion I feel is almost unbearable but, I continue, if I nap in a feeble attempt to rest I just lose time, as I will wake from the nap feeling unrested and groggy. When I sleep at night, I am told I can't reach deep levels needed as my pain levels are too high thus, chronic fatigue sets in.
However, looking into the IUD that my Dr. recommended I allow them to insert, I did my own research and found some shocking law suits to the IUD company Mirena, which is her recommendation. As well as the fact that they cause min-abortions monthly as they do not stop fertilization, it seems they just cause a whole ton of bad thing, abortions, birth defects, cysts, blood clots, etc. It's sad they don't give you all these facts when suggesting you get it implanted inside you.
Just one of the many things I've been going over in preparation for surgery. If left alone with my own thoughts all I can think of is one looming thing...surgery got bumped up to a week after final exam's and 4 days before christmas....Dec. 20th I go into Women's Hospital and they will take out cysts that have grown, or have formed, and they will be taking out the scar tissue that has attached to organs, or intestines after some cysts have burst and they will cauterize the area's that need that too...I push hard to keep going everyday, I attend classes, I am working on two 12 page papers and I am trying so hard but most of all I just want to sleep....eat some cream of broccoli soup...and sleep...I just want to numb this but how..this pain might not kill me but its starting to feel like a work in progress on top of papers at least...
So after midterms in my exhaustion I summoned the energy to bake as baking is oh so comforting. My Dr. has called and on Dec. 20th I will go in for a very necessary surgery that to be frank scares me. I have been slice and diced before and now I'm short a gallbladder, which is so not cool. The recovery time for this one is 6 weeks as it's quite invasive. So as my nerves jitter I wanted something productive and comforting to do and so I put two n two together and arrived on the conclusion that:
I like pumpkin bread
and it is fall
which equals it is time to eat pumpkin bread :)
The leaves change as I sort through recipes and my pumpkin stares at me, making me feel guilty for not giving it a greater purpose. But in my searching I have come across a that looks wonderful, upon further research into it I have found the original recipe from which it came. Looking over comments of others who have tried it out I tweaked it a tad here and tweaked it another bit there and so finally below is my altered recipe for delicious pumpkin bread as best I could make. Although being me, I really like to do everything the hard way...just kidding I LOVE learning how to do things from scratch so I scoured the internet and stumbled upon this recipe for making pumpkin bread from scratch. So I followed instructions:
Part One: Make pumpkin puree from my pumpkin
1.) I cut my pumpkin up into 4 quarters
2.) I gutted the gross gooop out of my pumping
3.) I put the quarters on to baking sheets, preheated the oven for 350 and let it cook for an hour.
4.)When it comes out scrap off the flesh, which is now musshy and slips off in places where it's bubbled.
5.) take the chunks of soft mushy pumpkin and put it into a bowl, and start mushing it with a potato masher or fork, then use a hand held mixer to mush the rest up into puree and there you have it pumpkin puree.
Part Two: Make pumpkin bread
Since I had soooo much pumpkin I came to a cross roads of problem number 1: half of my pumpkin.... = 6 1/2 cups blue bowl ...recipe calls for 2 cups pumpkin..sooo I doubled the recipe:
Ingredients:
2 cups butter
6 cups sugar
8 eggs
6 2/3 cups flour
4 tsp baking soda
1 tsp baking powder
3 tsp salt
4 tsp cinnamon
4 tsp nutmeg
5 tbsp ginger (worth it!)
2 tsp cloves
1 1/3 cups water
4 cups pumpkin
Directions:
1. Cream together margarine, sugar, and eggs.
2. Combine all dry ingredients and add to creamed mixture alternately with water and pumpkin.
3. Beat well.
4. Pour into well greased loaf pans or muffin pans
5. Bake at 350 degrees for 60+ minute for muffins, (for loaves maybe more) or until toothpick comes out clean.
This recipe was wonderful, however my suggestion is that it is baked a bit longer for a oaf as they turned out a tad doughy inside.
Like a mosaic I feel broken into so many fragmented parts of who I am, dumbfounded by what this mess of pieces could possibly turn into. I feel as though I have neglected this blog as I have not wanted to share these hard feelings I am having, so I have not voiced them in entirety or made known their existence because sometimes I feel like if these thoughts are outside of my head then they become real. And that would make them a part of my reality. However, not saying anything about them will not make them disappear. A few weeks ago I finally went into Vancouver for the long awaited appointment at the BC Women's Centre for Pelvic Pain and Endometriosis, with their Surgeon. In preparation for it they have you watch rather graphic video's on why there is endometrial pain and how they can help with removal of tissue and cysts. I went in with an understanding of what we would be talking about and how it pertained to my situation. However, I was not expecting that the pain mapping would take place during that appointment or what it would entail. I was asked if we could do the mapping during the appointment, I agreed to it immediately part out of naivety, and part out of desperation. I soon realized just how unaware I was. As it included causing a lot of pain in order to find (map) where the most pain was through the use of an EV Ultrasound, which to be frank is similar to being beat with a stick from the inside out. I walked down hallway from her office in pain with tears streaming, and on the way out I was handed a packet of information on the surgery that I had also agreed to. With the promise of a surgery to take away a major part of my pain I realize just how desperate I've become. Surgery in January.... Merry christmas and Happy New Year to me....?
Flipping through the info packet I see that research has shown that people with endometriosis have a 40-50% chance of not being able to have kids. Reading further into the packet I learned that the chances of becoming pregnant go down with age and after reviewing this I researched further on the subject only to find that they were correct. Go figure a research facility being correct. This felt like an added bruising to an already low blow. The days that followed seemed full of deflected frustration. This is a curve ball thrown at my revised Plan what is it D? Now after much revisions were onto Plan E as in Exceptionally different, Exasperated by changes, Exhausted by revisions..... since my Plan A was destroyed by this whole getting sick matter and then Plan B was taken out by the realization that the pain was increasing and not going to go away anytime soon then Plan C was revised due to the naivety that there was a name and cure for what I had and that what I had was a singular disease. A lot has changed from the days when a plan seemed like a good idea. And I think that's just it, having a plan is a silly idea that I have some sort of control over what happens to me, these events are out of control and that is a hard thing to come to terms with.
Now that is a lot to think about and it has plagued my thoughts up until this week when I saw the Naturalpath doctor who had the results from his last lyme test. It seemed like a hail marry when he asked to do one last test after the rest had come back negative. And perhaps it was, but the result of this more specific test unveiled a less specific answer. For once in a couple years it was positive, yet is neither here nor there as it is a specific test called IgM 31 kDa Epitope and was positive, but for what? \
Well I tried breaking it down into english as lab's and doctor's seem to complicate things further than they need to be...
"IgM refers to those antibodies that are produced immediately after an exposure to a disease, while IgG refers to a later response. Given the cyclical nature of the infection and the slow lifecycle of Lyme bacteria, you can pop positive on either type of test both weeks or years into an active infection. Your body is essentially getting reinfected constantly."
The 31 kDa epitope test is to confirm (or not) that the reaction seen on band 31 on the western blot is due to borrelia rather than some type of virus. Band 31 has some cross-reactivity with viruses, meaning if I had one of the viruses that causes cross-reactivity at the time that I was tested, then the reaction at band 31 may be due to the virus and not borrelia.
So then in conclusion, I could be positive for lyme or I could be positive for a cross reactive virus. Thus the choices are still slim and ever so complicated. The Dr thinks that we should continue with discovering wether or not it is Lyme which would include 2 weeks of Herx antibiotics and then retest. Herx, apparently hurts similar to chemotherapy. This treatment is a debatable option as it's an undetermined option as politics surrounding wether or not the medical board will allow the use of IV antibiotics in the treatment of Lyme. Thus I may or may not have something that I may or may not be able to be treated for. The conundrum continues... And so now you know the things that are causing me to worry, this isn't even including the fact that I have three midterms in two weeks. I'm not sure where I am headed, I know I need support right now because these are hard circumstances but things will change as life is not a series of still photos it is a fast paced action movie and I'm not giving up I will press onward in faith that things will continue to change as they always do and this will pass as it has to. There are only 60 minutes in an hour and then that hour is gone, it can not rewind thus the scariest most uncertain times in life must go by as minutes in an hour it'll fade away. And once it has gone something new is born from it because we are ever changing. We learn something new, incorporate it into our being or discard it but either way we are changed by it's presence, as we have knowledge of it's existence, thus we are not the same people before who were unaware. Things change, circumstances fade away, and life is consistently being reborn.
Yesterday, I awoke in a groggy daze when my vision was still kinda blurred. And then as if remembering that it was time to get up, my body ached it's morning time ache, and I scrambled to get my legs beneath my body. The rest of the day, to be quite honest was a blur, there was stuff on my to do list so I raced here and there, all over the house... 'twas a cross between married-wifely duties, and oh-shooooot-we-have-fleas. So I whipped thru that list, then went out for coffee, came home and realized I have no idea where that cat the vet told me to watch went... looking high and low, in all her favourite hiding spots, the games box, on the sleeping bags, in the closet, on my chair, above the microwave, and everywhere in-between but alas no cat was found. Until I realized I went into the laundry room for a minute before getting called away...and upon a further search there behind the hot water tank is a little tiny cone surrounded face...poor snuffle-ufagous. Then suddenly it hit me, that growly angry tummy, I stopped everything and looked down at it like, oh dear, that was me...and in that moment I realized I hadn't eaten lunch.
As I stopped to think about it, this summer was harder than other summers past, it hurt more. As one DR. appointment after another dragged the summer away, waiting on test after test, and it was just plain hard. Monday I was afraid, and I cried out of pure frustration. This may seem strange if you've never endured chronic pain, or the frustration of our canadian medical system. Afraid because this school year has arrived and being on higher doses of Lyrica (strong pain medication) I feel a bit more energetic, like I can handle more. Thus I have challenged myself and taken three courses this semester. However, my fear is encouraged by the daunting voice in the back of my head telling me I can't do it, that I'll need surgery and then how will I continue, I could get sicker, and that life right now is too hard to continue to challenge myself. That voice is my own worst enemy and I don't agree with it. It makes me sad thinking of those fears yet I know I can push a little harder, I can go a little further, and every day I do it. Giving up is the easy way out. Life gets hard, the pain gets worse, but I feel like the little train that could, on those days I just keep saying "I think I can, I think I can...I know I can, I know I can..." there's so much wisdom to be found in children's books that apply to us even as we get older.....I would go as far as to say that those books apply more to us now as adults than as kids. There are struggles that I don't want to walk thru, there is sorrow I don't want to bear, but there is also hope. Hope and patience are virtues that as long as we hold on to them, the pain might not be so hard to bear each day.
When it is hard to hope and our patience seems thin we look up to and ask for help to a very big God who truly understands. And I think the healthiest part is that we can dialogue with God, about the pain he has asked us to walk thru. We can even go so far as to get angry as many others have in the past. We can come to him with all our emotions and in my opinion that's where the depth of my relationship with God dwells, in the ability to tell him I'm really frustrated, mad, confused, and scared because I don't understand why he has given me this kind of pain. Often I think of Job and his dialogue with God, I think he learnt more through that dialogue than he did in any devotional times he may have had, because he got to express his ugly feelings, the ones that most think you can not bring to God. In doing this he learnt to better trust God's judgement, he was put in his place when he got out of line, and in the end had a fuller understanding of who God is.
I think expression is hard because similarly with the church you might feel like your burdening the church with the heavy path your walking, when the church should be a place to share your burden. Often we don't bring angry emotions to God because we think it's a bad thing to do, we think it's too heavy, or inappropriate. He's a really Big God, that is bigger than your view of him. He can handle a child getting mad at him, just as a parent can handle sitting with a child that's angry and doesn't understand. I think if we make our relationship one-sided and share only the good stuff or only the bad stuff, or even only ask him for help but never say thank you...then perhaps we have put God in a box labeled "use in case of______". He is big and he is to be feared but he is good and also wants to know all the details of your life, why not try him? Test out your relationship with him by offering more of yourself, more areas of your life. He is not a genie, He is a father, a creator, and many more. This is my struggle I try to do it on my own when he's always there to help carry the load. It's easy to be frustrated with the church and complain that its like this, or like that, because we expect more of christians yet forget that they are just human trying thier best and in no way are they infallible. We get mad easily when the church or christians let us down yet do we tell them? It is not a good reflection of God when christians fail to be christ to each other. But as Ghandi said we need to be the change we wish to see in our world. Thus I want to be someone friends can come to, if you have a heavy burden let me lighten your load, if you need a cup of coffee and someone to listen I'll drop what I'm doing and put on some coffee.
With a fiery rage my legs burned, there was a sharp pain-filled lightening storm brewing in my back and my shoulders feel like the literal weight of the world has crashed down on them...yikes. So what has happened to me, you ask....well dear friends I have been victorious today. I hiked. enough said right! I know I'm very proud of myself! It's an incredibly big deal, I feel like a party should be thrown. It's been.............I don't know how long since last I hiked, and I think it showed just a little bit as my huffing and puffing gave the big bad wold a run for his money. The majority of the time I hiked I couldn't help but think about the gossip that would follow, I mean sick people don't hike do they? and oh how much better I must be feeling now that I'm hiking. It's been bad enough not looking as sick as I feel but, oh the scandal of hiking! LOL. All that comes to mind is the quote “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”― Albert Einstein. I'm having a fish-being-judged-by-how-well-it-climbs-trees-week....do other people have those?
The thing about a fish climbing a tree is that it is not a probable thing. Thus if it does it wasn't it may not come down once it is up, or it may not do it again. Or in my case it may have been told that it probably couldn't climb the tree at all.
“Just as my pain belongs in a unique way only to me, so I am utterly alone with it. I cannot share it. I have no doubt about the reality of the pain experience, but I cannot tell anybody about that experience. I surmise that others have their own pain experience, even though I cannot perceive what they mean when they tell me about it. I am certain about the existence of their pain only in the sense that I am certain of my compassion for them. And yet, the deeper my compassion, the deeper is my certitude about the person’s utter loneliness in relation to his experience.” (Illich, 1976).
Amazing to think that pain as it was inflicted upon a person it then belongs to them, in spite of not wanting it to belong to me, it is mine to bear. And similar to how I cannot share the feeling of this pain I cannot put into words how it feels....I can summarize that I hurt really badly today, that I have a sharp pain from under my right ear coursing down to my collar bone, or that I've been to the washroom 4 times to have my food voluntarily leave me still undigested. I can state that I can feel the pain of cysts inside my pelvic region yet, these descriptions all fall short of fully convening how I feel. I think that there is a point where words fail me, just as my body has reached point of failing to digest the simplest foods. This is a special place to be, between a rock and a hard place. I cannot expect you to understand how I feel, or why it does not show all over my face, yet too often I make that mistake. I forget that others don't know, and I judge them based on what they do not know, for that I am always sorry. I say always because in fact it happens more often than I know. I get frustrated that an acquaintance is baffled by my healthy appearance because I go through so many untold battles. But, that is where my error lies. These battles are not untold because I cannot tell them but they are untold because words would fail me to accurately depict the feeling and gut wrenching that enriches these battles. Words can only convey so much meaning before they fail to depict everything and it would be akin to telling a tale in Chinese and black and white, the language would be foreign because the pain is foreign and the feeling would be black and white because they are feelings only one who has been there could possibly colour in.
These past few weeks I have been learning the difference of a couple words and their relation to chronic pain, in thinking that they may help someone else I thought I'd share my lesson with all of you. Often I will say, "I'm sorry I can't ________, because I'm in too much pain". Letting others know where your at is a good idea, saying I can't but continuing anyway makes me a liar. I don't want that, in order for others to know that "I can't" actually means "I can't", I have to rephrase my wording as "I'm sorry but I won't be able to do that today" and then actually push myself not to continue, because in the end I only hurt myself. This is challanging because with all this pain I feel that I fall short in so many other aspects of life that I push myself harder to do things that I previously say I can't do. I need to let myself suck it up and accept that I won't be able to do certain things some days. Because communication is very important in relationships in general, yet when dealing with chronic pain open and honest communication is more important than ever.
Relationships hard in normal everyday settings because we have unrealistic expectations of other people around us, with the kind of pain, fatigue, and other issues I deal with relationships have grown an extra language barrier. The language of pain is one few know and even less understand. I think that in order to have better communication with people who don't understand this language of mine, it is best to treat them like ESL learners. It would be wrong to hold poorly worded comments against a person who was learning english, and similarly it would be wrong to hold poorly worded comments against a person who doesn't understand my pain. We have misconceptions that when a comment is said it is meant the way it sounds, yet I feel most of the intended meaning is lost in translation. Comments like, "Oh I thought she was better", "Can't she do a simple job", or a personal favourite "But, You look fine", or...well, I digress. These comments translate to me as the person is judging me based on appearance and since I look great, it must mean that they don't believe me that my pain is what I say it is. It hurts, cause I feel like thier calling me a liar, or being mean. However, they aren't really....Really. at least I hope not. I mean I often feel hurt cause of these little comments that shouldn't matter, because in an ESL perspective they aren't being mean, they never intended the comment to translate like it did. They just made a poorly worded comment based on their lack of understand my language. So I breathe deeply and tell myself "they meant well" at least they took the time to show concern for the situation...that counts for something. I think if I spoke german with the tiny tiny vocabulary I know, surely I would say something very very wrong and would hope that the person I spoke it to would understand that I didn't know what I was saying and thus can not be held accountable, I didn't curse at them on purpose. I would hope that they would look past my words and try and see my well meaning heart, and surely an embarrassed face if they informed me of my transgression eek!
I went into the Naturalpath clinic today and looked like everybody else, just another person waiting for the Doctor.Yet, its painfully clear how unlike everybody else I am when I get home and literally crash on my couch after taking more painkillers that again don't help this kind of pain. Sometimes I wonder if its worth it fighting the pain with doctors, drugs, surgery, time, and energy. It doesn't feel like it's getting me anywhere, but tired faster. All I can think of right now is how painfully alone I am in this situation, I mean literally there's no one else home lol, but seriously since I got sick six years ago I have family and that's it. I mean there are good days and there are bad, I just feel like today isn't either. It's one of those days when I force my body out of bed and do what I have to only to come home worse for wear and realize I'm really lonely being sick all the time. I want a day off. I'm a little young to not have friends, but have two cats that I spend most of my time with. That's sad, I mean I need to get a life yet, I'm stuck in this body that gets worse, that bleeds when it shouldn't...that doesn't digest any food that goes into it, that wakes from pain, that feels at times only pain. I'd like to say it's been a rough day but truth is its been a rough couple of years. I'm trying hard not to let it get me down I truely am...but you see it's hard when I don't get a day off from this body of mine. At present, my legs are sore like I ran a marathon, my head has a shooting pain, my back burns and all I can think is that I shouldn't be complaining.
Aside from looking fine on the outside, I spent money we don't have on blood tests that are only performed in the states for Lyme and Parasites to get answers that we don't know will come. So, he took my blood, and by Tuesday it will be on it's way to a lab somewhere in the states and by ten days from now I should get a call about the results....which could be positive or negative for oh so many things... Which I am afraid of because if they all come back negative, that will mean that I have to go through with the investigative surgery and I hate being cut open about as much as the next person. But I think I'm almost more afraid of how violently I will end up vomiting from the knock out gas they'll give me. However on the up side, the surgery won't be preformed at Abbotsford Hospital, where nurses tell me to be quiet as I cry due to the pain of a gallbladder about to burst....yeah, cause that made sense. And, they wonder why I didn't come in sooner.
I am putting off calling my family doctor because it means I'll have to follow the pain specialists instructions and ask him to refer me back to the Gastroenterologist for another colonoscopy for another look into chron's and lupus. That was not on my list of 'things to do this summer' and if having a colonoscopy is on someones list of 'things to do this summer' I would seriously question their sanity....I mean who wants a "c.u.b.".....On the list of things "to do"= things to put off doing for as long as I can...is handing in a 20 page packet of consent forms and surveys to the Women's Hospital in Vancouver where a UBC specialist waits to see that they can legally cut me open for research. I didn't mind the consent form I mean I'm at wits end being this sick and seriously desperate enough, it's more the surveys of my pain and how much of an effect it's had on my life that I'd rather not allow anyone to read because then they'd realize just how much of a life I have....it's embarrassing.
And even though I'm feeling quite blue, I am thankful today for a lot of things such as:
a credit cards that allow me to pay for tests I can't afford
the ability to ship my blood to a lab in the states to be tested
a new basement suite to rent with good landlords
landlords that let us have our cats (my only friends..at times)
It seems like to find the exact research I need to compare labs doesn't exist. All I wanted was to see if these tests were available elsewhere, and if they were cheaper elsewhere and why I needed them...this is all the information I found on them collected from bits of info scattered across the online world. But it was enough to convince me that my naturalpath had the best in mind for me :) hope it helps others understand the tests better...
Lyme and Parasite Tests
Test Breakdown:
Drawing Blood and Interpretation of tests: $700 (other dr.'s charge $1050 - $1100)
Complete Lyme Panel:
Tests 6050:
#230 (IFA), #188, #189, #456, #453 (IFA, IgG, IgM), PRC, and Western Blots.
These tests have an 80% detection rate and over 95% specificity.
IGeneX Cost: $475
For this same exact test is called Lyme Panel C at Clongen Lab and costs = $1725
Wise to do as this test as many coinfections mimic lyme, and many ticks that carry lyme also carry multiple other coinfections.
IGeneX Cost: $780
These tests are newly developed and other labs such as Colegen do not have the capabilities to preform it.
Tests Total Costs + Blood draw + Interpretation= $1955
$455 will be taken off and only charged $1500 to make it cheaper on me.
Doctor:
Dr. Jonathon Berghamer, N.D. began his study of health and science at the University of Guelph from which he graduated in 1997 with an Honours Degree in Genetics and Molecular Biology. Subsequently, Dr. Berghamer discovered his passion for medicine and the art of healing as independent study and travel brought him through Central America and South East Asia. Upon returning to Canada, he enrolled at the Boucher Institute of Naturopathic Medicine and upon graduating with top honours, received the prestigious BINM award for Clinical Excellence. After graduation, he completed a 2-year clinical residency with a focus in Applied Kinesiology, Physical Medicine and Prolotherapy.
Lab: IGeneX
IGeneX, Inc. boast to have, "been offering "high complexity tests" since 1992. It is certified by
Centers for Medicare and Medicaid Services (CMS), formally known as CLIA and bills
Medicare in the U.S. In addition, it holds California, New York, Maryland, Pennsylvania
and Florida licensure since these States require a separate license to perform testing
for patients. To ensure that it maintains the standards of a High Complexity Testing
Laboratory, IGeneX is inspected by the California Department of Public Health (CDPH).
CMS and New York State Department of Health G\fYDH) on a regular basis prior to
renewal of licenses. IGeneX was last inspected by both CDPH and NYDH in 201 1. It
passed both inspections and the licenses were renewed."
They state that their Proficiency Testine (PT) which, "is the use of inter-laboratory comparisons to determine the performance of individual laboratories for specific tests or measurements and to monitor a laboratory’s performance. Participation in proficiency testing schemes provides laboratories with an objective means of assessing and demonstrating the reliability of the data they are producing. Such inter-laboratory comparisons involve two or more laboratories conducting the same test or measurement."
IGeneX states that, "In order to monitor the testing quality, PT must be performed on every test offered by a
clinical laboratory at least twice a year. We have an overall score greater than 98% for
all PTs for last 9 years. (More details on PT performance can be obtained on request.)
Validation Protocol Before IGeneX offers any 'home-brew' test, for clinical use,
extensive validation is carried out as described in our validation protocol (part of the
QC-QA procedure). This process has been reviewed and accepted by CDPH, CMS
and NYDH. Before a new test can be offered in New York State, NYPH has to review
and accept the new test validation."
Others researching into the same tests have found that, "IGenex tests look for DNA traces of Lyme, parasites, and bacteria through directlytesting for each strain, whereas other labs tests do not. The older Wblot/ELISA tests look instead for your immune systems *reaction* to Lyme bacteria. Thus, IGeneX uses
a more liberal interpretation of the Western Blot than other labs. The CDC surveillance criteria was developed to track a narrow definition of Lyme where there was a very high confidence that a positive was accurate. They wanted false positives to be very rare, and they didn't care about or evaluate the false negative rate." Unfortunately, this is not well understood by doctors, which has been devastating for
tons of patients. It's important to note that, "false positives are indeed rare, even at IGeneX. But IGeneX will call some results positive that the CDC calls negative. That is because IGeneX reports other relevant bands that the CDC doesn't."
The specific tests for Lyme:
IgG Western Blot shows and old, or chronic infection.
IgM shows new infection.
Both commercial labs Quest, and Colegen leave out the most specific tests for DNA bands #188, and #189 from which the lyme vaccine was originally made from. Laboratories that use FDA approved kits are RESRICTED from reporting all of these bands, as they must abide by the rules of he manufacturer. These rules are set up in accordance with the CDC's surveillance criteria, and increase the risk of false negative
results.
Here are the bands explained:
If a patient is highly symptomatic of Lyme, there is actually no point in doing the ELISA or EIA serum tests, as they do not have the sensitivity or specificity of the Western Blot that is needed in detecting Borrelia burgdorferi (Bb), which is the organism that causes Lyme disease. Contrary to what many insurance companies believe, the IgG and IgM Western Blot for Lyme disease are not the same test. Some companies will deny one and pay the other, claiming they are the same test or duplicative of one another. IgG and IgM are two completely different antibodies. IgM antibodies are the first antibodies to be produced in the body in response to an infection, and is produced in great quantity. IgM antibodies are large, up to six times
larger than the IgG antibodies. IgM antibodies, when present in high numbers, represent a new active infection or an existing infection that has become reactivated. Over time, the number of IgM antibodies will decline as the active infection is resolved. IgG antibodies are produced once an infection has been going on for a while, and may be present after the infection has been resolved. Generally speaking, the presence of IgG antibodies to an organism when accompanied by a negative IgM test for the same organism means that the person was exposed to that organism at one time and developed antibodies to it, but does not have a current active infection of that organism. When it comes to Borrelia burgdorferi (Bb), the organism responsible for Lyme disease, that is not necessarily the case.
To recap, depending on the numbers,
IgM is a sign of a current infection.
IgG is a sign of a current infection, or of a past exposure to or past infection by the
organism.
Bb can hide in the brain and cerebral spinal fluid (CSF) and by altering its surface
proteins, can remain invisible to the immune system for a long period of time. Once the
immune system figures out what it is and starts making antibodies to it, it shifts is
surface proteins once again, fooling the body into thinking the infection is over. Bb can also turn itself into undetectable cysts and various other forms (called L-forms) which also help it elude the immune system. If the immune system can't see it, the immune system can't make and, or only insufficient antibodies, which all contribute towards making the organism impossible to detect by any testing methodology, including WB. Thus, blood and urine tests for Bb can be negative, even if the patient is "challenged" by being given high dose injections of antibiotics to try to trigger a reaction from or partial die-off of Bb that will cause it to show up in the blood or urine. There are 5 subspecies of Lyme (Bb), over 100 STRAINS in the US, and over 300 WORLDWIDE! So, at least, try to get the best testing done that is available to rule this out.
The following are 3 more reasons why Igenex has the more accurate testing than other
labs: 1. Quest/Labcorp make their Lyme WB probes from Rabbit antigens. Igenex used
human samples. 2. Igenex uses samples from patients across the U.S and Europe, as well as patients
with both early and long term Lyme infections. 3. Lastly, Igenex uses a 12.5% acid gel to separate out the bands. Quest and Labcorp use only a 10% solution. Igenex has been investigated my the States of NY and CA and put through QC testing by the FDA- very difficult and stressful when the FDA comes in to investigate. And they passed.
Another reason Igenex is used by most Lyme specialist in the states is because IGenex uses Dr. Lida Mattman's techniques in finding the disease through "feeding" the bacteria which quickly grows. Through this technique IGenex looks for the bacteria in the sample as opposed to the comercial labs such as Labcorp and Quest who just look for the antibodies of lyme. This technique helps to find a Mycoplasmal infection. Which
is a type of infection that masquerades inside the blood cells own walls which masks it as to not be detected by the bodies immune system. Which is why there are no antibodies found in other lab's tests. Dr Mattman actually witnessed spirochetes exiting out of red blood cells under staining and amplification. As for the New Western Regional Complete Coinfection Panel it is a new type of testing that I have not yet found available through other labs.
References:
• Explanations about testing and labs:
Tomorrow I will go to the Naturalpath clinic and see my doctor. He will ask me if I want to do tests 6050 and 5085....and I will answer....?
He will reiterate a lot of information at me about the state of my ever decreasing health, we will discuss treatment options based on weather or not I do the tests. And I will sit stressed over the cost of these tests and how they will effect my future. I thought if perhaps I ignored them, they'd go away...nope. I thought if I set up crowdfunding perhaps they'd be funded by the gererousity of the public, which would take the stress off of me, it did not happen. I thought if I pretend I was okay I wouldn't have to worry over tests...I could not pretend to be okay at the same time as I run to the nearest washroom to be sick. Thus my options are dwindling as always, I can ignore them no more. The truth is the options he will give me tomorrow will not compare to my actual and very real options, which are:
A) I do the $1500 dollar blood tests and fallback a semester because we can't afford to do both. Yet this option gives me the truth in 3-4 weeks of whether or not I have lyme and parasites causing my illness.
B) I abstain from the blood tests, and wait till September 19th at 12:10pm when I go into Women's Hospital and discuss with a new specialist how investigative surgery will go. Signing away consent form after consent form giving her the ability to perform surgery to explore what my insides look like in the off chance that they could actually visually see what is causing my ailments.
Seems like if I got the tests now I could find out the answers in time to know if I have lyme and treat it without needing the investigative surgery. I don't want surgery, I desperately don't won't surgery. Being drugged and cut open to further someones research in the off chance that something could be found does not sound like fun to me. Yet, option A of blood tests is too expensive, and we can't afford it. We already pay over $200 a month towards medical expensive (prescribed drugs, treatments, and specialist visits), I really don't want to lose another semester of school because I'm already 2 years behind where I should be in this bachelors degree. I've researched the blood tests in hopes that family and friends might help us with the cost but sheepishly I am having a very hard time asking anyone for help. These options don't seem like options to me they seem like death sentences. I do the tests I push myself back in school, yet find out answers and begin the choices between painful treatment options to cure my pain. I do the surgery and take a leap into the unknown will they find something maybe, can I handle the pain of healing from surgery and depression of no answers if nothing is to be found again? I don't know. All I know is I'm scared. I'm scared of always being in so much pain for so long and never knowing why. I feel like I have to jump down the rabbit hole in the pursuit of all my options because I can not sit here in pain and do nothing. I want to try to get the blood tests done, and have answers as well as know whether or not I should continue on with the surgery? while having high hopes of continuing with school come September.
As far as options go I have set up a number of crowd funding options on here to try and cover the costs of the blood tests on GoGetFunding and IndieGoGo. As well as a facebook group that has paypal capabilities. I am not good at asking for help and so I'm not asking for your help I'm simply asking for a chance at hope.
Sitting in a walk in clinic it seems interesting to see where people choose to sit down or rather who they choose to sit by. I walk in see the room randomly seated at a half full capacity and see two chairs empty and choose the one furthest away from everyone else. Why did I do that? A) the large beefy man sitting beside the two empty seats looked intimidating and B) the other half of the room looked pretty sick and being more supseptible than most I want to be as far from sick germs as I can. However all three people after me came n sat beside me. There are six other seats, I wonder if they thought like me about germs, beefy intimidation and looked to me and thought definitely not frightening and sat down. Hmm... How do you choose where you sit? Or is it random?
I've found myself in n out of Dr.'s offices, wondering where it all ends. Seems to be repetitive part of my life for the past 6 years. What I've found is that most offices do not communicate with each other thus when you are referred to a new specialist there will not only be like a 6 month wait there will also be no blood work or recent tests when you do finally get to the clinic. Note: insist on a copy of all recent tests from your Dr.'s office as a record for yourself, put it in a binder and bring for your specialist to see. Right now my binder is with the Naturalpath who says he looks at it before/after each visit.
After my visit yestarday to the Pain Specialist I cant say I'm overwhelmingly hopeful, I mean it was the same song and dance 'up these meds, try this new medication, here's the options of all the treatments we can do...and oh by the way I think you really should try the injection therapy'... When he says injection therapy he means injecting into muscles around my spine....it sounds dangerous and I don't like needles. I hate the idea of masking the pain for a little while and then having to continuously go back for injections because the pain doesn't go away it's just masked for a little while.
I'm exhausted from being exhausted, and sick and tired of being sick and tired, but more than anything I hate waiting to be better. I hate pushing myself as fast as I can straight into the ground so that others are taken care of, and I can feel good because I've done my duty. Duty, the reason I push so hard to exceed expectations that when I do excel at being okay - on the inside I'm burnt right out left heaving and panting, but I look okay. Is it worth it? All the hours I spend cleaning till my hands smell of bleach so the house can look clean and dinner is ready, all so I can look like a good housekeeper...then people that don't understand the personal toll it took to get it to look like this, can be impressed. Our appearances are simply based perspective, from the angle looking head on at you in public you look great, from the angle the private life you look tired, exhausted, and run down. We run around busy like lab rats trying to impress each other and then never fully understanding the people around us, but we sure understand the weather better. With all these unbelievably high expectations on me I feel drowned by the weight of whats expected of me because I know my limits and the people with these expectations need to get an adjustment according to my limits. They need a new appreciation for me being able to get out of bed. Because right now I'm going back to bed because if you don't appreciate all the exasperating energy it took to try to impress you why try. I suppose you could say today's a bad pain day for me and it doesn't take much to push me over the edge.
These days I've been doing a lot of packing and thinking, and I have not come to any brilliant conclusions apart from the realization of tired I am. Its 2:43 AM and I should be sleeping yet I'm awake again researching cures to any of my many defects (hashimoto's, endometriosis, fibrmoyalgia, chronic neuropathic pain, chronic fatigue, ibs, pick one) yet, where a new cure comes a new problem seems to always follow. You see after much consideration I went off of the pill due to it causing more severe fatigue and other exciting side effects that on top of already chronic fatigue just wasn't worth the pain. So after much research I found a safer, natural alternative the Lady-Comp which I've decided is worth a try if it cuts down on my liver killing arsenal of medications. But, after a few weeks of being off the pill my friend endometriosis came out to bully me back into bed just when I started feeling more awake, and all around happier. And, So I find myself again up at all hour in pain and looking for answers, it's history repeating itself seems I find a solution and a problem hits - Story of the last five-six years.
I finished school and thought I did remarkably well 77 in a theology course that I struggled through at best, and then 95 in a counselling course that I pushed hard just to finish. To me those are very good grade's considering that I had to drop a course due to pain and illness. While I can only do a couple courses here and there these achievements to others are mediocre at best, but in my books they are BIG and I'm very proud of myself. In my books these are not just grad's showing intellectual achievements, they are much more complex than that, in my books they equal my resolve to push through pain and the many challenges of illness to get to class each day, to push through chronic fatigue to study in bed, to push through pain that says I need a hospital ASAP, these grades show that not only did I get through school but I did relatively well in spite of all my hardships I look at them and think that while I struggle to be okay I can still keep trying I don't have to give up. To others a 77 is not good because they are only looking at the grade, they are missing everything it took to get to that grade. They look and see a number and thats there own issue because I look and see my efforts, my triumph and I beam ear to ear!
Today I've felt sick, right now I feel sick, tomorrow I'll feel sick, what makes it different is today I got out of bed, tomorrow I just don't know. I have pain burning up my left arm into my neck, my lower back throbs, my heads telling me I owe a large sleep debt and my body laughs at my head cause we both know that won't be paid back any time soon. I haven't updated because then I would have to admit I'm not okay even as I desperately cling to the curse of an invisible illness - the invisible part that alludes as it does look as though I am okay. I am desperate to avoid guilt, to let my pain lurk in the shadows as a dirty little secret that I wont indulge in admitting. If I admit I'm not okay it means letting others know and I cant afford the slowing down thyed make me do,
I wake up and think I'm just not up for the task of what ever comes next I just want back into my bed. Laying awake in those first few moments of morning I feel no pain because my body and my mind haven't had time to connect. Those moments are mine and in them I wonder how far I could go in life if it were blissfully painless. Then I am swamped by the pain and remember, that even though I had a plan God has a better one, and even through the pain Blessed be his Name. For I am reminded that when I feel alone I never truly am, and when I feel like I can't handle the path he's asked me to walk, I remember he sees my whole life not just my short sight and has great plan. I love Deut. 31:6 "Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." as it reminds me that God is always with me in the good and the bad, and in the pain. I guess this is why I can accept it all, because my hope is in the Lord, I know I can talk to him, I know he's there, just because I can't feel him or hear him does not make me alone. I can tell him everything I feel and know that he has gone before me and has chosen what struggles to allow into my life because he already knows how I'll get through and how it will mold me. Thinking over the struggle of not feeling like I can handle all that he has allowed for me to deal with I think about a mosaic, they're beautifully broken, yet each piece is intricately place and cemented back together in a new more beautiful way. The plate or glass was ordinary and mundane before and now it's a master piece.
The truth is that “The world is full of suffering. It is also full of overcoming it.” – Helen Keller.
It's all about how we choose to frame our trials, we can focus on us and how much worse off we are, how everyone else has gotten so much farther ahead of us and we can't catch up. That's easy, sooo easy. But, that self-talk hurts us. Self-pity is the easy way out, it's hard to look for the light when all we see is darkness at the end of the tunnel, and that when you need to pull out a flashlight. The way I see it God never leaves you, you leave him. Not because he did anything wrong but because you framed him as a genie and of course you'd be disappointed because he doesn't fit in that box, or any box.
~ElysiaB
So much to do and so little time, rushing rushing just get by. I feel it touch like the white rabbit in alice in wonderland.
I went to bed early hoping to wake up more rested and refreshed. I awoke at 8 when my husband got up for work, n felt gross still so I slept some more, I woke at 9 when the phone rang, and then went back to sleep cause I still felt gross, then suddenly it was 1 o'clock! I got up and made my husband lunch and am still amazed at how entirely exhausted I am I ate and sat to do some studying yet can not bring myself to focus on it. My mind drifts to nowhere and I feel so very sleepy, perhaps it's this awful appendix pain as its swollen and annoyed me with its consistent throbbing. Although it's hard to tell the difference between the cracked rib and the appendix they both annoy me so. And the worst part is I haven't the time for this distraction, I have classes this week with assignments due and Finals next week. Thus I'm refuse to be late for those very important dates, theres simply too much at stake, and my appendix will just have to wait. Feels like I'm struggling just to stay awake! (and thats saying something when you have chronic fatigue already)
The last few weeks my pain has gradually gone from a 7/10 to 9/10, I've gone in to the doctor and the Ultrasound and EV tests came back clear as always theres nothing on paper to show what's going on. The walk-in Dr. hardly cared enough to look at me she just sat there looking at the screen, pushed on my stomach where it hurts of course and then dismissed me with a requisition for more tests and a prescription for Tylenol 3 which has not even touched this pain.
Theres a dreadful feeling that I could always be like this. In pain with no answers. Speaking of which the blood test results came back and my iron is still awfully low which means I'm losing blood somewhere or I'm not producing enough. Yet, I know I'm losing it somewhere as I see it every now and then in the most uncomfortable places. The stool tests for parasites, and blood are still not back after at least three weeks...which is not a good sign. Food is still not digesting in me, which makes it seem redundant to eat as I can't break it down, it hurts my intestines, and it clearly does not want to stay in me. When the pain grew unbearable I went in to the Dr. last week originally it seemed like appendix yet, the Dr. said that I have all the symptoms of colon cancer so I am completing testing for it. I think the most troublesome factor is that my chronic fatigue has doubled and I feel as if I haven't slept in months. I can't hardly focus on school which is frustrating cause I'm already a touch behind I feel like I push sooooo hard to stay awake, pretend I'm not in brutal amounts of pain just to keep going and I'm still not doing good enough. Theres a million things I need to do and no time to do them, and no strength to do them. I've come to a point where it's all I can do to just survive the day, just not go to the hospital, to just get out of bed. I stare at my text rereading the same page five times and not remembering a thing a going back and trying again. I push really really hard so it's not notice that I've taken the max amount of strong painkillers. I push really really hard so that it's not noticed how far I'm falling. And at times I just want to give up, and lie down. I just want the pain to stop and be normal again. I'm trying so hard and watching everything pass me by, I'm trying so hard to not show the cracks in my armour, to not show weakness. Just keep pretending.
There's a mask I wear, and armour I put on as I get up and ready for the day. A mask to hide tears, the pain, and the doubt. The armour to show strength where behind it only lies weakness, the armour shiny and new makes the mistakes so discreat that they can be passed off as
I feel guilty and ashamed of being so weak, I try to hide the cracks in the armour I'm really discreat. It looks so nice and shiny on the surface. I buff the outter layers and keep them looking new because if anyone saw the cracks the armour might just crumble
~ElysiaB
I haven't posted anything in a while, and I can't say I'm sorry because I just haven't had anything to say. But, that's not to say I have anything to say now. Now I just feel tired of not saying anything. It's not that I've been better, or been worse, I've sort of just been. However, I read this quote today "I have pretended to go mad in order to tell you the things I need to. I call it art. Because art is the word we give to our feelings made public. And art doesn’t worry anyone." I don't particularly know who said it, but it reminded me that I miss art, because when you have those days where you feel so much good or bad or both, arts just kinda the greatest thing in the world because you can work out how you feel while you paint and know one has to know how you feel. Sometimes I look back on a painting and I think wow theres some real passion and emotion in there but I can't remember what I felt when I painted it, I just know I felt better after. Art is beautiful because it's in the eye of the beholder, everyone who looks at the same painting will think it means something else. For some reason or another I happened across this page and I'm really glad I did because then I happened to also come across this video, you should watch right now.
I found the guy very curious as he goes about the video and in the beginning of it I think he's making a point about history repeating itself, and then in the middle he makes me very sad, thinking of where we are at and close to the end I'm highly entertained by the preposterous thing people are saying to questions he asks them. And when it's over I'm just glad I watched it. Then I went back to the page I had come across which is a tumblr that I also liked.
It feels like I've been at that place where it matters the most, and sometimes I'm just not sure if I'm sinking or swimming. That reminds me of this book I read a very long time ago in almost as good as a different life, it was called "Reviving Orphelia" by Mary Pipher a clinical psychologist who worked with troubled teenage girls, she's always been a bit of a hero of mine. I should read read that book. I'm not sure I write for others as much as I just wish to clarify my thinking in a way that can also help others clarify theirs. It would be a wonderful thing to believe in yourself when it's hard to believe in yourself. I'm not sure I'm quite there yet..but is anyone really? I mean if our thoughts were broadcasted on a radio frequency anyone could listen to would we be ashamed? It's easy to reflect on others and give advice or criticism, yet when it comes to us deep down, we don't really enjoy reflecting on us or our weaknesses because what if we find something we have to deal with. It would be hard then, hard to push through or face. What would people hear you thinking? are you lying out-loud about yourself? or others?
In chapel a guy at school spoke about faith and trusting God and how it's easy to trust him when every things going good but it's hard to trust him or have faith in him when we don't know what's going on, at least thats what I got out of it. Afterward people were called to the front to deal with their pride, or have a time to pray. And it was a good time to have with God, there was people praying aloud, speaking in tongues, others praying something out of someone, and others singing. And after this week beginning at a practicum with rehabilitating young girls who were acting.. to put it nicely chaotically screaming, and then to end in this chapel with this unusual stuff going on (this isn't to say that anything about it was wrong) I realized I felt nothing but calm. These things didn't scare me, shock me, or throw me off...they were just happened around me and I was calm in each circumstance. While the screaming at the beginning of the week was going on I just wanted to help, I saw these girls as being somewhere scary and new and could understand their screaming and confusion. I saw the staff tired and frustrated and I understood that in their position it was frustrating to deal with consistently, and in chapel I saw people coming and meeting God where they were at and that's awesome. And, I'm finding myself surprised by the fact that not a lot surprised me maybe it's because all I've seen or just what I'm going through inside.
A guest speaker that I highly admire came to our counselling class and talked about his career in the crisis field and how it's began and gone for him. It was highly encouraging to hear as at one point he stated that after everything you've been taught, you have all this training but when you go into a situation it’s like “wow, never seen anything this bad” “what do I do?" When I enter into a situation as I did this week I feel inadequate, acutely aware that I don't know what to do, yet thinking back to what he had said made me feel comfort in the uncomfortable.
However, looking into the IUD that my Dr. recommended I allow them to insert, I did my own research and found some shocking law suits to the IUD company Mirena, which is her recommendation. As well as the fact that they cause min-abortions monthly as they do not stop fertilization, it seems they just cause a whole ton of bad thing, abortions, birth defects, cysts, blood clots, etc. It's sad they don't give you all these facts when suggesting you get it implanted inside you. 
Just one of the many things I've been going over in preparation for surgery. If left alone with my own thoughts all I can think of is one looming thing...surgery got bumped up to a week after final exam's and 4 days before christmas....Dec. 20th I go into Women's Hospital and they will take out cysts that have grown, or have formed, and they will be taking out the scar tissue that has attached to organs, or intestines after some cysts have burst and they will cauterize the area's that need that too...I push hard to keep going everyday, I attend classes, I am working on two 12 page papers and I am trying so hard but most of all I just want to sleep....eat some cream of broccoli soup...and sleep...I just want to numb this but how..this pain might not kill me but its starting to feel like a work in progress on top of papers at least...
