Archive for June, 2010

A JOURNEY THRU LYME ©Karen Angotti

// June 30th, 2010 // No Comments » // Karen Angotti Writings, LymeBites Blog, Mother's Corner

(the following is copyrighted and used with permission)

When Lisa Marie was about two, she asked her daddy where the bus traveling south down Highway 101 was going. Now, she thought she already knew the answer to that question because the only place that she saw buses very often was at our church. So, when her daddy casually replied, “Oh, maybe L.A,” she chortled at the joke she was sure that he was making. You see, she had also heard of L.A. and lots of other big cities. Daddy flew to them all the time in his job as an airline pilot. So, quickly joining in the fun, she shrewdly joked back, “Oh, ho, maybe Tokyo!” Much to her delight, her daddy thought that her joke was hugely funny. Within a couple of years, her knowledge had expanded to include the idea of the Pacific Ocean and the location of Tokyo far across that ocean. This story reminds me much of myself and my ignorance at the beginning of a journey with Lyme disease. But I have come a long, long way. I have come a long, long way since I first asked a lady about a drug called “Rockafin.” She asked me to repeat it a few times then burst into gales of laughter as she gasped out the correct pronunciation, “Row-se-fin” (Rocephin). I had just about mastered Ixodes dammini, too, when the powers that be announced that it was no longer a species and, instead a tongue twister called Ixodes scapularis took its place. Fortunately, the Ixodes part remained the same and soon I was belting it out with the best of the entomologists because part of the mystery had been solved, the mystery of how we came to be ill with Lyme disease when we did not have “the” tick, the tick that causes Lyme disease that is. Borrelia burgdorferi was another quite onerous task to learn. I really thought that these scientific types surely did enjoy naming things with long names until I learned that it was named for Dr. Willy Burgdorfer who discovered the spirochete (college biology had put me on speaking terms with spirochetes). I was so grateful to him for his discovery that I happily learned the name but it would have been a lot easier if he had happened to be a Smith or a Jones. Still, somehow, I do not think that Borrelia jonesi or smithi would have quite the same scientific ring. And even something that simple looks awfully funny italicized and with an i on the end. Erythema chronica migrans was improved considerably when most people started deleting the chronica. Though just looking at it still made me think of migraines. Personally I prefer the abbreviated EM rash or the even more descriptive and comprehensible bull’s eye rash. In a short amount of time I began to comprehend that ELISA was not a character in Uncle Tom’s Cabin and I can even spit out Enzyme Linked Immunosorbent Assay. Nor is the Western blot some test done exclusively in the Western section of the country. Then after a couple of years of these totally maligned antibody tests I heard about the superduper PCR/DNA (polymerase chain reaction/deoxyribonucleic acid). You will note the better the test is supposed to be, the longer the name. This being B.O.J. (Before O.J.) not many people had heard of PCR’s or DNA testing. But through perseverance I discovered that the two are used almost synonymously and should soon replace the impossible-to-reliably-perform culture. There is one word in this maze though of which I heartily approve, a little four letter which shares the reputation of many four letter words, a word that one must purse one’s lips exactly so to say, the word bleb. I must congratulate whoever was instrumental in naming this appalling attachment to the spirochete whose function no one can quite explain, for the name personifies all that I feel about Lyme disease. How can you say bleb without feeling like you are spitting or screwing one’s face into the shape of a wrinkled prune as though smelling a repugnant odor? Most appropriate sentiments for such a disease component. There are other things that I have learned, things that have been imprinted more indelibly on my brain than these multi-syllable, diction improvers. Though I have mastered many mechanical skills such as giving shots, changing central line dressings, clearing blocked catheters, inserting feeding tubes, running different kinds of pumps, and even the dreaded drawing blood (I had to tell myself that if millions of IV drug users could find a vein even in their drug induced stupor, surely I in my right mind could locate a simple blue flexible tube under the skin.), these too are not the things that come upper most to my mind when considering this disease. The thing that amazes me the most is how much I have changed. Could the meek girl who quaked in the face of any disapproval from authority really be me? Could the person who would have tears flowing in the face of the most minor insult now be one who can return stare for stare and respond with, “Oh well, I guess everyone is entitled to his opinion.”? Am I still that person who always finagled some way to have my husband do any returns that had to be made and did not really like to attend any function without him? Maybe, because I still think that any confrontation or disagreement takes more out of me than it does the other person, but I am stronger, more determined, more self-assured. I hope that is good, because my husband also tells me that I am more cynical and skeptical and harsher and somehow I know that he does not particularly like it. Women should never go to war for it is impossible to watch people suffer and die at the hands of greedy power mongers and not change, not lose some of their softness, and still be able to fight. And why is it that I feel more vulnerable, more exposed, more tender than ever before? Is the other just the shell, the tough outside covering the scared me inside? Oh, yes I am scared. Only fools are not afraid in war. I have seen the destruction that this war has wrought for the battleground has been inside my child’s body. And I have watched a once vibrantly healthy, finely toned body shrivel to a painfully thin, exhausted, pain- ridden shell. And I have watched eyes that once shone with the zest of life dull to the faintest ember in the presence of the pain. The casualties in this war are not the scientists with the defeated paper, but the patients with the raging disease. And so I will learn the tongue twisters, and read the medical journals because God has placed me in this fight and these are my arsenal. And because He is just and good, I know that there is a purpose in this gruesome war and eventually Right will prevail. And in the words of one old soldier, “I have only just begun to fight.”

Lyme Disease Awareness Bracelets Are Here!!

// June 28th, 2010 // 12 Comments » // Eric's Blog, LymeBites Blog, Lymenaide Awareness Campaign

ashley lyme green braceletsYes we finally have some Lyme disease awareness bracelets to help with our fundraising! They are “Lyme” green and they simply say Lyme Disease on them.

If you want to purchase them here are the prices-

* 20 for $50 ($2.50 each)
* 10 for $30 ($3.00 each)
* 5 for $17.50 ($3.50 each)
* Under 5 = $4.00 each

To make a purchase send an email to Ashley at ashvantol@lymenaide.com or Eric at ericrutulante@lymebites.com, we will give you the link to pay through PayPal or the instruction to pay by check.

Thanks!

I’m Too Exhausted From Fighting Myself Today To Fight Lyme

// June 27th, 2010 // 10 Comments » // Eric's Blog, LymeBites Blog

About 20 mins ago I thought to myself, “*&%$#*, I really need to come up with 3 posts/articles today, and honestly it will take the best acting job ever to act like I care”. 

About the same time my dear friend Maude sent me a text asking how I was doing today.  I told her the same thing I told Facebook, I’d give just about anything to be at the ocean or walking around NYC today.  I then told her I am exhausted from the battle against myself.

Suddenly a lightbulb appeared over my head (I’d say not literally, but with no mirrors around I can’t promise that one didn’t really appear over my head).  I had something to write about…at least for one of the three things.

I realized last night that all the time I had set aside hoping to get something done was spent literally fighting myself.  My health has improved to the point where I can function for at least a small part of the day now.  To be honest, life was much easier when I couldn’t get out of bed, when the only expectation anyone had of me was a text message to let them know I was still alive.  When going to the store for milk was an accomplishment, and nobody (including myself) ever expected me to get out of bed.

But things have evolved to a new level.  I have improved gradually over the past 5 months.  But I am still very sick.  Some days too sick to function.  But now that I’ve begun to get a bit of life back, it makes those sick days hard to handle because you have to drop everything all over again that you’ve just begun being a part of again. 

Some thoughts I’ve had this week have included not saying “yes” anymore when people invite me places or to do things.  After 13 months of this illness (and the year before that when I was going downhill) I’ve begun to develop a guilt complex for my inability to be part of the lives of my loved ones.  All of us with Lyme disease (or any other chronic and/or invisible illness) start to feel like we become a let down to our loved ones with time.  We also begin to notice a decline in the invitations we get, because people begin to assume we will say no, that we are too sick.

I have to say again, that I am extremely blessed with the people in my life, while they may think I’m too sick to be a part of things, they rarely take it personal.  But it doesn’t stop the guilt I feel when I have to cancel at the last minute.  I’m sure my family and friends have gotten tired of hearing “all depending on how I feel” whenever I make plans with them.  But I can assure you they are not half as sick of hearing it as I am in saying it.  So this week I thought maybe I should just start saying no from the get go, it’s less disappointment for my loved ones that way. 

Then I return to the thought of not being able to stand not having my social life.  If you knew me before 2 years ago, you would know I am a social person, I love to be around people and I love to have fun.  With each month that passes with this illness I see more and more of that person slip away.  As I fight to get my life back, I can’t help but wonder will I get that back too?  Or will everything change so drastically because of this disease that I will never know the life I loved before?

Who knows.  I don’t.  I don’t know how any of this will play out.  I mean, a year ago I would have laughed in your face if you told me I would become so disabled by the bite of a tick that I would find myself living in my mother’s family room, out of work for a year, paying thousands of dollars a month just to stay alive, and spending day after day in bed.  Yet, that is exactly where I am.  So who knows where I will be a year from now.  I just pray it’s not still laying in my bed in my mother’s living room wishing my legs would work well enough so I could walk the 1/4 mile to the lighthouse with my friends, instead of staying in the air conditioned house watching crappy Sunday television. 

Some might say Lyme is my biggest obstacle, but I’d disagree and say that I am my own biggest obstacle.  Because there are days I do literally exhaust myself from fighting with myself.  An hour ago I told myself I was going to have to suffer through it today and force myself to write.  (Luckily thanks to Maude’s text this just came right out of me like a bad case of diarrhea, no forcing needed.) 

Now I’m back to facing the day and the rest of the things that need to get done, and the fight with myself begins all over again. 

Getting better and having improvement with your illness is wonderful, but I think it’s important that we who are sick, as well as you who are healthy, understand that getting better comes with a whole new set of issues and problems that we have to learn to adapt to.  While it is a truly wonderful thing to begin to heal, it presents us with a lot of issues that I personally don’t feel ready to deal with. 

Which brings me back to my text to Maude.  I really do feel like I can’t get anything done because I am in a constant battle with myself over how to handle each new improvement my treatment brings about. 

For those caretakers, family, friends and loved ones of those of us suffering with Lyme (and it’s coinfections), please take a moment to realize that the process of getting better is just as complicated and mentally taxing as the process of getting sick.

There’s no miracle cure to our illness, we didn’t get to the condition we are in overnight, and we are not going to be made whole overnight either.  It’s a journey, but not always a fun one.  Take the time to really think about that, make a plan for getting better.  Work with your support system to find ways to handle the small steps forward after so many steps backward.  I can’t think of anything worse than all this fighting and all this treatment to get better, only to fall apart now because I can’t handle the stress of getting better.  We are so busy worrying about the past, when we got sick, how sick we became etc. that it’s hard for us to even think about the future, or how to handle getting better. 

Maybe I should scrap all my plans for today and begin my best selling book “Healing for Dummies”.

Lyme Catch 22

// June 26th, 2010 // 6 Comments » // Eric's Blog, LymeBites Blog

This is one of many “Lyme Catch-22′s” I’ve noticed with this disease, but this is what I’ve been picking up on this week and I wanted to talk about it.

The Paint May Lyme Green campaign, as well as all the other efforts for Lyme disease awareness in May have definitely been successful.  Besides the PSA’s being shown across the country, and the increase in dialogue about Lyme disease, there have been the actual personal stories we’ve been hearing from people who were tested and found out they had Lyme disease because they were made aware through the awareness campaigns.

When this began I was ecstatic.  Not to know people had Lyme, because that’s not something to be happy about, but because it became clear that all the hard work we put into raising awareness was paying off as people were letting us know that thanks to us they had found out they had Lyme disease, and could now be treated. 

On a personal level, one of my closest friends was diagnosed about 2 months ago with Lyme.  It took her 9 months and several Dr’s before she could finally get the testing she needed to confirm she did indeed have Lyme.  She became concerned as she learned alongside me with my illness and realized how many of the symptoms I mentioned that she also had.  This came after 20 years of Fibromyalgia, and then a diagnosis of Lupus.  Those of us in the Lyme community will tell you those are two of the diseases that should be red flags for the possibility of Lyme disease.  During May this friend’s adult daughter was also diagnosed.  I was so happy for my friend to have an answer to years of pain and confusing medical problems, but then I almost felt guilty when her daughter tested positive.  Without the awareness we were spreading, she may not have known to even get tested for Lyme.  But to see it hit two people in one family was heartbreaking for me.  But as I spoke with them both I continued to keep as positive as possible, letting them both know somehow we would all get through this.  Everything works out…not always how we want, but it always works out. 

While that was going on I thought of my Aunt and Uncle, both of whom had “inconclusive” Lyme test results in the past, even while seeing ticks and having to pull one out.  They live in the mountains, surrounded by wildlife.  They were both told they were negative, but because of misinformation.  Many doctors don’t realize that being CDC negative does not necesarrily mean being negative for Lyme.  That’s a lesson most of us have had to learn the hard way.  (It clearly states on the lab results that the CDC qualifications for being positive are for statistical purposes only, not for diagnosis.)  When they reviewed their actual test results it was clear there were positive bands.  A positive band is indicative that there is either a Lyme infection or at the very least there has been exposure to Lyme.  (I am not a doctor, this is not my area of expertise, this is me summing up what I’ve learned in the past year…but please know that only a Lyme Literate Doctor can diagnose and properly analyze Lyme results.) 

The point being that in the back of my head the fact loomed that it was very possible my Aunt and/or Uncle could also have Lyme and may therefore also need treatment.  We would joke that if more than one of us needed treatment we’d all end up living together to be able to pay for it.  But as I watched my friend and her daughter enter this arena, the thought was always in the back of my head. 

In addition I have made many friends in the Lyme community who are in this same boat.  Some who come from entire families infected with Lyme and/or co-infections.  I saw what it would do to those families.  While I saw this, and was aware of it happening, I wasn’t experiencing it first hand like I was with my friend and her daughter.

The last week has been an influx of feedback from people involved in the Paint May Lyme Green awareness campaign telling us stories of people who heard the message and went on to be diagnosed with Lyme because of it.  As the numbers increased I went from being ecstatic at knowing our message had gotten out there, to feeling a little sick over the fact that so many people were having to face the reality of Lyme disease.  And if there’s one thing I hope I’ve conveyed in my writing about my disease it is that it is not a pretty reality.  It downright sucks to be honest. 

I kept reminding myself that no matter how high the numbers of people testing positive, it was for the good because these people had a shot at getting treated before they became completely disabled, which is what happened to me.  That was why I became involved in Lyme awareness in the first place, so that others would not have their lives pulled out from under them the way I did.

But that all changed a lot today when my Mom called me in to her room and handed me a piece of paper.  As I began to read it my stomach seemed to lurch as I came across the line I was dreading, Lyme – Positive.  It took a minute to really sink in what I was reading, but my mother has indeed tested positive for Lyme disease. 

Now, for those who question me when I say that the current laboratory tests for Lyme are inaccurate, you need to know that she has been tested at least twice since I became sick, and both of those tests were negative.  This third one was CDC positive, and no question about it.  (The NYS Dept of Health statistics for LabCorp testing for Lyme is a 34% accuracy rate.)

It was kind of a slap in the face for me to realize the woman who has been fighting so hard for me as my biggest advocate and supporter, the woman who opened her home up to me when Lyme made it impossible to have my own home anymore, the woman who is so willingly spending her nest egg so I can get the treatment I need to get my life back again, now has to face the same disease for herself that she has fought so hard against for me.  

We will face it, deal with it and find a way through it.  The messages I kept giving my friend and her daughter have been ringing in my own mind all day for myself, somehow it will all work out and we will get through this.  But it is certainly not fair that so many more people have to deal with the living hell the rest of us with this disease have to go through. 

So this is where I find one of those Lyme Catch-22′s.  While I am so happy the message of awareness is spreading and people are taking that message to find out earlier instead of later that they have the disease, with every person diagnosed I feel a twinge of sadness at the success of the awareness campaigns, because I know what it means to each of those people who now have to fight this disease.

I found out when it was too late to get treated and still go on with my life.  By the time I found out I had Lyme disease, I was completely disabled and watching the life I knew fall through my hands as if my whole life had turned to dust.  So the blessing in all of this is many of these people are finding out before they get to that point, and that is a wonderful thing. 

But it just reaffirms my anger that this disease has been allowed to run rampant for so long.  That the medical community in general has ignored the reality in front of their own faces.  That we have allowed business men and women dictate our medical care instead of the doctors who actually know what they are doing.  It disgusts me that the corruption and greed on so many levels has allowed this disease to evolve over the last 30 years to the point where we are now. 

I have to just take a deep breath (or perhaps I should take several) and put that anger back into my determination to raise awareness and save lives.  Every day this fight gets more and more personal, and today it took on a whole new level of personal as I read my mother’s Lyme results.

My commitment is stronger than ever now to this fight.  It’s no longer just a fight for myself, it’s for all the others who have to face this new reality.  Please join me…I can’t do it alone.  The Lymenaide Awareness Team cannot do it by ourselves.  We need each and every one of you.  Don’t do it for me….do it for your loved ones, because any one of them may be the one who will need you to fight for them.

THOUGHTS ON VIETNAM AND LYME – ©Karen Angotti

// June 25th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog

(Written and copyrighted by Karen Angotti, printed with permission)

Vietnam. Did you wrinkle your nose and have a bad taste in your mouth when you read the word? If you came of age in the sixties and seventies, then you probably know what I mean about this most unpopular war–uh-oh I’m sorry I mean military action. My husband spent almost a year in that little spot of hell on earth. He was 8 miles from the North Vietnamese border living in a hooch which boasted two foot long rats on the inside and poisonous snake nests underneath. During the rainy season, the sheets were constantly damp and he contracted severe dysentary. His unit was the last stop on the supply line so the only pops that reached them were Frescas, all the better drinks having been snatched up before they reached Quang Tri. But all these were just minor inconveniences compared to the stark realities of war. At twenty years of age he watched friend after friend leave after breakfast and not come home for lunch. Then his turn came and he struggled to land a helicopter filled with smoke while his own flesh was burning. Only two people out of an eight man crew lived through that crash and Frank was one of them. Yes, he had third degree burns on 20 per cent of his body but he was alive. He was medi-vac-ed from Japan to Ft. Sam Houston and, with tears in his eyes, thought that he had never seen a more beautiful sight than the lights and flag of the United States of America. He soon found though that a good many people in the good old U.S.A. were not quite so happy to see him as he was to be back. Vietnam vets were derided, insulted, and even spit upon. He fought back rage while Jane Fonda made millions after sitting in a North Vietnamese anti-aircraft gun pointing it at our soldier boys, and I do mean for the most part boys. But perhaps these people were not the worst because at least they had a position. The others were harder to understand. Like the girlfriend, who wanted to know , “Oh yes, now which side are we fighting for North or South Vietnam?” The apathy was incredible. No matter what your position during the war, I am sure that you can agree with me on two things. One, it was not the soldiers’ fault that our government had entered into this war. And, two, most of the people who were protesting the war were not protesting against the ostensible, lofty reason for the war which was to prevent the spread of Communisim, but against the WAY the war was being fought. Too many lives were being spent trying to fan the flame of war rather than trying to put it out. We had the military might to have ended the war without losing American lives, but our leaders refused to take that course. Instead we had “peace with honor” which had no honor. And within a few months of the armistice, the Communists had overrun not only South Vietnam but Laos and Cambodia killing millions of people.

Now enters–the Lyme Vietnam. Our country is engaged in a war against an enemy which has invaded our borders and whose presence threatens every man, woman, and child. It is an unpopular war. And many would not call it a war, but then they are not involved in the fighting, the hand-to-hand combat, the care of the wounded. Even in the midst of the battle, the soldiers have been insulted, derided, and spit upon as if subjecting them to these hostilities will cause them to withdraw from the battle. Little do these blinded zealots realize that we were drawn into the battle kicking and screaming to be released and that we would like nothing better than to lay down our arms and quit fighting. I don’t know about you, but I would like nothing better than to trash this IV pole, the pills, the bedpan, the feeding tube, the needles, the wheelchair, and other assorted paraphenalia. Quite frankly, after more than two years of carrying bedpans and rarely being able to leave my house because my daughter requires constant care, I am more than willing to quit fighting, IF someone will just stop the Borrelia burgdorferi from their assaults and convince them to return their captured territories.

Unfortunately, this war also has its Jane Fonda, a couple of researchers who have, in essense, turned their guns on their own fellow countrymen. Using unproven rules even stricter than the code from the Geneva Convention, they have defined a very narrow range of enemy action that may precipitate a defense response. This action allows the enemy free reign in many cases much like the Geneva rules left the G.I.’s defenseless if they followed such inane rules as not shooting at a religious statue even if an enemy soldier is hiding in said religious statue and shooting at you and not entering into that demilitarized zone even if someone in there is shooting at you. Like good soldiers, we are supposed to suffer in silence, follow orders, and let the powers that be determine our fate.

Again unfortunately, this war also has ineffectual and untruthful government leaders. Leaders who are more concerned with numbers and statistics than wounded or dying soldiers. Leaders who care more about their own public image than a mere soldier’s private sorrows. Leaders who want to direct the war from the comfort and safety of a cushy, government office. Leaders who are being paid cushy, government salaries to watch us die while they waste the research funds trying to find a better ELISA (an antibody based blood test) when they would not accept the results as valid even if they had one. In a real war, one uses the best weapons not the WWII relics. If we are going to spend research dollars let’s spend it on something that has results everyone can agree upon–a reliable culture.

Let no one kid you, this is a war. And like all wars, there will be one winner, at least, in the intellectual arena. But while the battle is being fought, we patients continue to lose—jobs, homes, families, schooling, life savings, painfree days, and, for some, their very lives. The longer this war takes the more we lose. We must shorten the war by throwing all we have into the battle for in this war there can be no retreat or armistice and the next draft number picked may be your own.