My lyme isn’t IDSA’s lyme disease……..or is it?
I can’t tell. who am I to even try to figure out their definition. I am, if I believe Chicago Tribune’s article on lyme disease this week, rather ignorant of my own medical situation and that of my children. I have… “lyme disease”… what ever DOES that mean anyways.. To the average person, unaware about “lyme disease”, it is simply Bb. If they even know that much… and honestly, that was me a year ago… what did I KNOW about it all?
nada… zip… zero.
Last year, in early Autumn my mother phoned me excited to share that she had been listening to a radio talk show program on the topic of “lyme disease”. After listening to the program, she HAD to share what she thought about it. My mother was like that, she told you like she saw it. She felt very strongly, after learning the details about Lyme Disease, that I had it.. I frankly thought she was nuts! NOT me.. I have oooodles of health issues.. but I didn’t think it could be lyme disease, I had been sick for far too long, with ups and downs.. THAT is not how Lyme Disease works. I had never even SEEN a tick on my body…and frankly I did not want YET another diagnoses.
Yet the suggestion of lyme nagged at me… so many health issues from my past came rushing to my mind.. and it bothered me, as I would lay awake at night..
I tend to be a “go getter”, busy all the time. Busy about the home, busy with the children, busy going to the many doctors our family had to see. My life was pretty go go go … except when I couldn’t go at all.. which was becoming more and more frequent.
I had been diagnosed with Pleurisy, again… WHO gets pleurisy in the late summer and fall? Who GETS pleurisy anyways?? I was told by the ER doctor that, generally speaking one does not have recurrent Pleurisy without an underlying illness.. and to be truly healed from it, I would need to discover that illness, and treat it… he was firm and to the point as he explained that.. but offered me no help in figuring out what this “mystery” illness might be.. no suggestions what so ever..leaving me feeling with a sence of urgency to discover the truth about what ever it was plagueing me. But at a total loss as to HOW.
So it seemed I needed another doctor, someone willing to look at the WHOLE of me, and consider the various issues my family was dealing with… and YET I wanted another doctor as much as one wants a hole in their head. I have a lot of doctors. (cardiologist, obgyn, GP, gastroenterologist, urologist, neurologist, allergists, pulmonologist, general surgeon, chiropractor, and those are just the main stream.. hey! I even have a favorite anesthesiologist! He’s fabulous ! ) time to add another?
But life is busy… With three children at that time, all with medical needs of their own, I was often visiting doctors & specialists all over the northern part of Illinois, sometimes as many as 9 doctor appointments in a week, & never it would seem, in the same suburb. Driving about visiting doctor after in “Chicago-Land” was growing weary.
These doctors seemed to know little, and change their minds often. The cycle of moderate health to extreme pain and illness was not lasting a few weeks or months.. this had been my entire adult life. It was getting worse. While perhaps it “ought” to have felt normal by that time, how can “ill” ever feel normal? I tried to pretend I wasn’t ill, but that often got me hospitalized, after pushing hard for too long, I would just crash. Ill with kidneys infected and stressed, ill with migraines, pnemonia, gall bladder, ill, ill, ill. endlessly ill.
I did not have time to hunt down this mystery NOW… not with the children’s health situation so obviously escalating. My medical issues had been baffling doctors for nearly 20 years.. they could wait.. but wait.. was it really that long, really almost 20 years?
Twenty years… it plagued me, so we made an appointment and met with STILL another doctor. I hated filling out the “medical history page”, there are never enough lines for all my surgeries, and hospitalizations, and I struggled to remember what ALL I had been through. I was bored even explaining all my symptoms to him.. But my wonderful husband was hopeful, our GP wasn’t listening, was not eager to help us find out WHY pleurisy again…? Perhaps this nice man would find it all … interesting, and want to do some …dare I say it? WORK.. maybe he’d be willing to THINK, and listen, and use all that amazing knowledge he gained in medical school, and in years of practice, perhaps he’d do more than order the standard tests and hand me yet another script… perhaps… I had my doubts though.
He listened to the list of surgeries, hospitalizations, and diagnoses, from Hashimoto’s, to sudden onset of asthma, diagnoses of lupus, than not lupus, than, “maybe lupus”, he learned of my neuropathy, the arthritis so much like my mothers RA, he wondered about my miscarriages, and inquired about all my allergies and sensitivities.. when did they start??? He heard about the many surgeries to drain infections in my breasts, that appeared for no apparent reason. He nodded when I answered about my migraines, so severe I had been given spinal tap on one occasion, and had been hospitalized on numerous others.. the worst ones lasting between 30-40 days. The doctor took notes about all the medicines I was on. Medicines to prevent the migraines, pills to help with the Hashimoto’s. He asked very good questions. He took notes, and appeared to be listening.. This was refreshing as so many MD’s had barely looked at my chart, and had me in and out of their office in 5-10 minutes, with a prescription in hand, with one “dubious diagnoses” or another. This appointment was getting rather long… who knew he’d be as inquisitive as my gastroenterologist?
He mentioned “lyme disease”, and said he wanted to test me for it. To which I threw all my questions at him..I wanted help with this pleurisy thing, the fatigue thing, the fibromyalsia (if that was really what I had)… how could lyme play any part what so ever in my health issues? He answered these questions, and explained to me that I had a LOT to learn about lyme.. That it was the next Great Imitator, a spirochete, and acted MUCH like syphilis, but in many respects was nastier. This sent me in the direction of studying.. They drew blood for blood test, and I went home to wait for the lab results.
Laying there in bed that very night, I thought of my health, my life. And a blaring memory came back to me. Nearly twenty years earlier, right after my highschool graduation, I worked at a summer camp. For the whole summer I worked in the north woods of Wisconsin, living in a small cabin built in the twenties, where our only source of cooking & of heat, an ancient woodburning stove. It was there, at the camp, mid summer that I had a terrible rash, OH just thinking of it makes me feel uncomfortable. The rash was awful, and no one knew WHAT it was… It was on my arm, and I thought, perhaps I had rubbed against a plant, or perhaps it was soome spider bite. The camp doctor did not have a clue, he did not believe it was either one of those suggestions, it was nothing HE’d ever seen… The clinic in town gave the same response, They did not have a clue, the clinic in the town farther away did not have answers either. So my next weekend off, I got a ride BACK to the burbs of Chicago, and saw some doctors there. Clueless. The whole lot of them. Oh, they gave me creams, lotions, and gels.. all promising to cure me of the rash..Funny to prescribe medicines with out a diagnoses. Perhaps that might fall under “dubious” . None of it worked. The year, 1990.
Laying there thinking of that summer, I remembered that I got the flu, and was very ill for a time. When autumn came, my freshman year, I ended up with mono, upper respiratory infection and a kidney infection. I struggled in certain classes. Classes requiring more analytical thought. It frightened me, because these were subjects I had once excelled at, this shouldn’t be so hard… why couldn’t my mind focus…I struggled through that first semester. Winter came, and my health did not improve. I pushed on, kept going, rested when able, but I had 2 part-time jobs, and was a full-time student. There was LIFE to be lived, fun to be had.. and I pressed on, surely this is how everyone feels, and they keep going… press on…
My sophomore year was riddled with more mystery illnesses, and suddenly I developed allergies to various things, even certain sweeteners. I was getting to know the staff at the local ER with all my visits there. On one occasion, for no apparent reason, I developed a sudden fever, right during a final! All the lymph nodes on my neck, face, head and even shoulders just swelled up, and I was rushed to hospital where they packed me in ice and drew blood, and never figured out what was wrong. After a few hours of observing, I was sent home, it seemed I was not dying, so I could go home to wait this “flare up” out. Follow up with my physician, who didn’t know WHAT to make of it.. “Let’s run an AIDS test”.. (can we say SCARY) we ran one, & it was negative.
Laying in bed, thinking of this possibility of Lyme Disease, I knew deep in my heart what the results would say. I lay there remembering how ill I had been in the early part of my marriage, how at one point the doctors said I had been on so many meds, so many antibiotics that there was nothing more they could do for me, I was becoming resistant, after so many kidney infections. No reason they could discern for them, no Malfunctioning happening in my kidneys.. They ACTUALLY sent me home from the hospital, ILL. We were more than a little scared. As we were getting ready to leave, the nurse gave made some suggestions. She thought it wise to cut out all antibiotics, even that which can be found in meat I would eat. To go organic, and to take vitamins and supplements to rebuild my failing immune system.. When we told the GP of what had happened at the hospital, he just ran another AIDS test.. it HAD to be an immune disorder he told us.. but that one was negative too. It was the early ’90’s, and what ELSE could it be?
We went home that night… and looked at our budget, looked at the mountain of medical bills.. and clung to one another. We knew we couldn’t BOTH eat organic, it simply wasn’t an option. We thought to give it 3 months of ME eating this way. I improved, but it was short lived. I wondered, did I improve because I had been on the antibiotics so very long, months? Had I only been rebuilding my health? Was the “healing “solely based upon the foods and other nutritional changes I had made.. an answer we still do not know, because it became a lifestyle, a yo yo lifestyle.
Remembering the brief months of health, followed by terrible illnesses, months on antibiotics, sometimes for various “dubious diagnoses” along with some quite legit, followed by months of health and recooperating. Financially, we would always JUST get out of the hole, only to fall right back into it. Recollecting the 16 years of marriage, countless doctors, specialists, diagnoses.. it was like a blur in my head when when weeks later I got the news…
Positive for LYME disease…systemic, causing immune issues… the next ‘great imitator”… Bingo!
Since then we have learned I also have co-infections.. along with illnesses perhaps related to lyme.. POTS, Hashimoto’s, just to name a couple. I have struggled with pleurisy, and acute pericarditis, neuropathy, migraines, extreme fatigue, and arthritis, worst in my knees and my hips, but often felt literally everywhere.
I have to say, that many doctors who have treated me over the years, have been simply excellent. I most appreciate ones who would openly admit to us, that they simply knew there was a single cause, but they felt it was out of their speciality… they didn’t know where to send me, what other tests to run.. I appreciated their humility, their honesty, their integrity.
There were other doctors too… some were what I call “scam” doctors, who gave the same diagnoses to everyone entering their office .. milking patients for what ever they could. We learned quick how to spot these…Then there were the “arrogant” doctors, who wouldn’t let me finish a sentence before either writing scripts, or telling me nothing was wrong. I had one doctor tell me I was a hypochondriac because I had 3 unrelated symptoms… My surgeon strongly disagreed, when later that same day I was admitted to the ER for a sudden emergency gall bladder removal, and a staph infection in my left breast. They never figured out why I had that third symptom, a migraine. Nor why the whole right side of my body went blank, sending me and my daughter down the stairs that week… But they did perform 3 surgeries on me in 24 hours! SUCH the hypochondriac… (sarcasm intended)
It has been a long road, and I won’t even begin the stories on the children, or on my husband all of whom were also diagnosed at a later date with lyme and company … I don’t want to write my book here.
It was asked that I share, just share a little with you about MY story, MY experience with Lyme disease. Share with you, because right now, our “chronic” lyme disease is under a attack, and getting a whole bunch of the media coverage. People… people JUST like me, are reading those articles they write in the newspapers, in the magazines, and thinking JUST like I did, “not me.” ” I don’t have that.” “can you believe this Lyme scam”. People who, like us, may one day HAVE lyme, or have a loved one with it… and never consider getting tested, because of words they read or heard in the media.
After the thousands and thousands of hours, hundreds of doctors, specialists, immediate care centers, and ER’s, I can honestly say.. If it IS a scam… it certainly isn’t the only one in town. We were certainly scammed all those years we paid all that money, and waited patiently for doctors to get a clue, give us real concrete answers.
I honestly don’t understand the IDSA’s guidelines.. I don’t understand the inconsistencies in the medical community at large. I don’t understand the hostility surrounding this. Perhaps I am the “clueless” one in regards to all the politics surrounding this disease.
In 1994, the American Medical Association put out a book, it was called the Family Medical Guide. That was the same year Machine Man and I married. It was that year we bought that book, and put it on our shelf. It has served us well through out the years, it is worn and broken, but I have yet to find one as well done, and as easy to use. In it are the following quotes about lyme disease. Please realize 2 things when you read it. This is the AMA who wrote this, and they have all changed their position, why? This was 16 years ago, and now we KNOW that Lyme disease (Bb) is rarely a solo disease. It is known as the next “great imitator” following after another spirochete called syphilis. It also travels in packs, with what is known as “co-infections” entering into your blood stream right along with it. This was not known in 1994, or perhaps just not information shared at the time of this publication, but the words here are good.
“If your Lyme disease is not recognized or treated, you go on to the second stage of the illness in which the disease affects the heart and nervous system. meningitis (inflamation of the meninges, or coverings of the brain and spinal cord) and partial paralysis of the muscles served by the facial and other nerves can often occur the meningitis causes severe headache, muscular weakness, and numbness or tingling. Irregular heartbeat and inflammatin of the heart and pericardium (the heart’s covering) are common. Those who remain untreated move to the third stage of Lyme disease, in which chronic arthritis often develops, usually affecting the larger joints such as knees”
and the section on lyme ends with
“Additional treatment may be necessary if symptoms recur. If symptoms of late-phase Lyme disease occur, treatment is usually given with penicillin or cephalosporin antibiotic. Prolonged use of antibiotic drugs may be needed for those with arthritis from Lyme disease.”
My lyme disease is not the IDSA lyme disease, at least NOT according the some newspapers out there.. but WHY not? Why the change in the Medical communities stance? What altered the perception?
Seems to our family, that our LLMD (Lyme Literate Medical Doctor) is standing by the original texts. We, Five lymies and a baby are now in treatment. We are thankful to have some answers, and something to work towards! We have hope, we strive, we study, and we are clinging to LIFE. To laughing together, living LIFE together, to eating, even if the meals are tricky because of various food sensitivities.. That is just a glimpse at “my lyme disease”.. but then, I am just one of the 5 lymies and a baby.. just one .. only one. and it would seem.. that my lyme isn’t ISDA Lyme disease…
here is a list of some other lovely souls who have written their stories…
Alix’s letter- http://bit.ly/gJoITn
Andrew’s letter- http://bit.ly/efOBxw
Kim’s letter- http://bit.ly/g7MRT9
Brooke’s letter- http://bit.ly/hweVql
Eric’s letter- http://bit.ly/ibWfPW
Candice’s letter – http://bit.ly/hdyj4z
sixgoofykids story – http://sixgoofykids.blogspot.com/2010/12/my-lyme-disease-is-not-idsa-lyme.html