Friday, January 28, 2011

Remembering a Life I Once Knew--Martha B

As I sit with pen in hand, weighing upon how to give an account of my battle with Lyme, I have no recollection of a tick or mosquito bite resulting in a bulls-eye rash or flu-like symptoms. I question how I got to this place in my life. I remember a life I once knew--what it felt like to run three miles a day, freedom to socialize with friends at a favorite neighborhood restaurant, eating without thought of the biological aftermath, and living without annoying and debilitating symptoms every moment of the day. I dream of a day where I can be free of Lyme, and will find normality as I join others in living.

My journey into a life with Lyme began unknowingly at the age of 31. I was a newlywed. I married a wonderful man at St. Mary’s Cathedral in Memphis, Tennessee, on March 1, 2003. It was not an expensive wedding, but a beautiful one. Shortly after, we began to train for the Peachtree 10K in Atlanta, Georgia. We had planned it early on and had been looking forward to it for months; it would be the first race would run together as a married couple.

Three weeks before our July 2 departure, I woke one morning to find I was severely constipated, and I knew at that moment that it was not just an ordinary episode. I did all I knew to relieve the symptoms, but was unsuccessful. The symptoms stayed with me all day and all night, and were more intense than anything I had ever experienced. I felt awful, but made the trip and successfully ran the six-mile race. Once I returned, the doctor’s visits began.

I was diagnosed with Irritable Bowel Syndrome approximately eight times by different doctors, underwent four colonoscopies, was prescribed a multitude of pharmaceuticals, and was given the run-around when I mentioned other possibilities. A year later, I was lying on an operating table and was diagnosed with stage-four endometriosis, now believed by many gynecologists to be an auto-immune disease. It had adhered to my colon. Subsequently, during an eight-month period, I went through three laparoscopies, forced menopause, and more pharmaceuticals before undergoing a full hysterectomy--all of this while working a full-time job that required 60+ hours a week. I look back and know it was the strength God gave me that got me through it.

After the hysterectomy, I gradually showed improvement in my symptoms, and although I dealt with daily bowel symptoms, I adapted. I continued to work and felt 70% better than I had over the previous two years. My physician prescribed Miralax and CALM magnesium to help manage my bowel symptoms.

Three years after my hysterectomy in 2007, I began experiencing chronic burping spells in which I belched every ten minutes. One can only imagine how annoying and embarrassing this was. The three spells I experienced within a year’s time lasted up to a month each before resolving themselves. In 2008, shortly after eating a meal, I became very ill. I felt a heavy pressure in my stomach and all through my esophagus, not similar to the pressure one would feel with acid reflux or indigestion. Even drinking water exacerbated my symptoms. This lasted for seven days before subsiding.

I began experiencing these episodes more often until they were occurring after every meal. Sometimes it simply took a sip of water or couple bites of food to get the symptoms rolling; other times it took nothing at all. At the age of 37, when my average weight should have been 115/120, I had lost 57 pounds in less than six months, arriving at 93 pounds. Food had become my enemy. It was frightening to look in the mirror. I wondered if I was going to make it, and how I was going to reverse my weight loss.

In July 2009, I developed bladder pain that was ruled out as a bacterial infection, and was prematurely diagnosed as intestinal cystitis. After a year of gastroenterologists, urologists, exams, tests, labs, x-rays, medications, thousands of dollars spent, and a lot of prayer, I felt blue and hopeless.

Prayers can be answered when you least expect them; a friend of mine encouraged me to visit her doctor who was able to diagnose her at a vulnerable time in her life. During my initial visit, he sat me down in a 1950’s examination chair, felt the temperature of my nose and feet, looked into my throat, and listened to my medical history. I thought, What am I getting myself into? Within thirty minutes, he was convinced I had somehow contracted a stealth infection. I was happy to have a possible diagnosis after being told by my gastroenterologist and urologist that they felt my symptoms were untreatable and incurable.

As more testing began, I gained hope. Then came the verdict. My Lyme IGeneX test results came back questionable, but because of the number of bands that were positive, my doctor was suspicious that I may have contracted Lyme. He sent me to an LLMD near our area who clinically diagnosed me as having Lyme. A second test came back positive for Lyme-fighting antibodies.

Lyme does not discriminate, nor is it selective; it feeds where you are weakest and attacks. My endocrine system was where it chose to settle. My LLMD started me on antibiotics, but seven months later I had not made progress, and we discontinued antibiotic treatment. It was then that God led me to a naturopathic doctor who practiced four hours away. A month after my initial visit with this doctor I found out that the health department closed down my LLMD's practice for failing to adhere to the four-week treatment the CDC allows.

In May 2010 I packed my bags and, with my friend, headed to San Angelo, TX for my initial visit with the naturopathic doctor. I am not going to deny that I was in a distressed state—I was desperate for answers. At 9 a.m. we walked into a small dark, but warm-natured clinic. What I learned there, I believe, will play a significant role in how I treat myself: understanding how the immune system and digestion go hand-in-hand, the importance of hormonal balance in organ function, and how we need to treat our whole self in order for our immune system to do what God intended it to do—to heal.

I finished my final lab tests requested by my naturopathic physician and received the results on June 25, 2010. I have many issues to deal with, hormonal imbalances, pathogens, bacteria, allergies to milk, soy, eggs, and gluten, possible roundworm, and fungal growth. You would think that I would be distressed by what I see on my reports, but I am actually relieved. Finally, a test that came back positive! I am eager to continue my journey as I begin alternative treatment for Lyme. I believe this journey will make me stronger, and one day I will find the freedom that I desperately crave. God is with me, and I believe that one day I will be healed.

Martha B., Texas

Tuesday, January 25, 2011

Maybe I Am Crazy--Eric Rutulante

Seven months ago was my 36th birthday. Plans for dinner with a friend, followed by a softball game. I was looking forward to a nice relaxing birthday. Before dinner I suddenly got a bloody nose, something I hadn’t had in a while. I could feel my sinuses and ears hurting. I told my friend I was sure I’d wake up with a sinus infection the next morning. I also said that something just didn’t feel right in my body.

As predicted the next morning I woke up with a real monster of a sinus infection. I called my doctor’s office (this was the first in a series of communication breakdowns with the doctor’s office staff and my doctor) and was told to go to Urgent Care because there were no openings. I made my way there and was diagnosed with my second or third sinus infection of the allergy season, which had only just begun.I spent the next two days in bed, crawling out on the third day for my birthday celebration at the city’s annual Tulip Fest. I was very weak, and had to sit through most of it, but it was nice to be out and with friends. I ended up throwing up before we left. I figured it was the antibiotics, and so much physical exertion after being sick.

On Monday I went back to work, and slowly recovered from the sinus infection while finishing my antibiotics. They had given me a z-pack for the infection. What I didn’t know was that starting the antibiotic was probably creating a herx reaction, long before I would ever find out what a herx reaction was. Zithromax is one of the antibiotics used to fight Lyme disease, so the medicine probably began to kill the Lyme bacteria. (When the bacteria die, they release toxins into the body, causing symptoms to worsen.) At the end of the five days, I didn’t feel all that great, but figured with time I would.

Friday, January 21, 2011

I Will Beat These Beasts--Lydia Niederwerfer:Part 2

How in the world was I able to afford his fee? The initial consultation for Lyme was 2-3 hours. We had one consultation. He agreed to take the fee in payments so that when I did find a Lyme Literate Medical Doctor, I would be able to see him/her. A day or two later, he called me with a referral of a doctor who was willing to see me. What a relief, and he was only an hour away. The tests confirmed my suspicions. I was found positive for Babesia, Lyme, and Bartonella.

In September 2009 I began antibiotic treatment. The doctor had recovered from Lyme and Babesia as well. He was aware of the CDC and IDSA guidelines; he knew first hand that some of us do not recover as quickly as the guidelines state, for he had experienced this himself. I am grateful for his diligence to help me become well. Although the road I traveled earlier with Lyme was horrible, I was blessed that this time that I did not experience the symptoms all at once that had caused me to become bedridden.

At first, I thought that I could not go through this again because I experienced the sensation of burning if anything touched my skin. With every breath I took, I felt the burning pain. It became very difficult for me to walk once again. I had to bring out the cane and knee braces I had once used. Oh, how I despised that! The night sweats, fever and chills were overwhelming at times. I couldn’t understand how you could be burning up and freezing at the same time. The night sweats drenched my clothes and my bedding every night.

The nerve pain and knee pains, along with the rib soreness and tenderness along my spine, would not allow me to sleep. After some of the sensitivity passed, I slept for ten to twelve hours a night and awoke feeling no more rested than I had if I hadn’t slept at all. I found myself falling asleep sitting up.

Shortly thereafter, I began getting severe pain in my eyes--as if someone was poking them with needles--and sensitivity to light. I had feared that I would lose my sight once again; it was an overwhelming sense of fear. The headaches and migraines came and wouldn't cease, all day and all night for a couple of months. Not to mention the weakness of all my limbs, which made it almost impossible for me to sit or stand. I swore that no matter what, I would never be bedridden again. I could not endure the indignity of having to be bathed and clothed as in the past. Every day, regardless of how weak I was, I took a shower and prepared to accomplish some task, no matter how small.

For a few months, every day I would experience sharp shooting nerve pains in various areas of my body, some so intense that I would fall to the floor in pain. As I sat watching television or just walked, I gasped for air. There were days the air hunger was worse than others.

What I found so difficult was the “brain fog.” I couldn’t find the right words, I forgot where I was going, I became disorientated, I could not follow a simple thought. For someone who prided herself in having a terrific memory, exceptional attention to detail, and great organizational skills, this was the most infuriating. I would take all the other symptoms combined rather than lose my mind.

The symptoms are endless: the great sense of rage or depression, the complete loss of hearing which later turned to severe hearing loss, the loss of hair, the inability to read a book, the shingle-like rash that covered at least a third of my body, the swelling of my joints, and horrendous nightmares. There are a few more that I am sure I have forgotten.

By January 2010 many of my symptoms had disappeared. However, after a tumultuous night with nightmare after nightmare, I awoke with swollen and hurting knees and I was very stiff. I found my hands a bit swollen and finger joints were sore. I also found simple tasks like typing, opening a bag of chips, or a bottle of water a bit more difficult. My fever had returned. I looked in the mirror and saw my eyes were swollen with black rings under them. How disheartening! Does this mean my recovery is still miles and miles from reach? How far will this set me back?

I wanted to scream but didn’t. I cried a tear or two but that was all. I swore to myself that I was not going to let this bring me down. I would continue to have faith and recover. Unfortunately, it just won’t be on my timetable. The more set-backs or obstacles that are thrown at me, the more determined I become that I will beat these beasts.

It is now June 2010 and I have been Lyme- and Bartonella-free for a few months. My only obstacle that remains is Babesia. I was at least 90-95% myself. My medications of conventional antibiotics and herbal tinctures with supplements had been weaned down to only four. In one weekend, that all changed. I will share my journal entry for that weekend.

As I sit here trying to get comfortable and rest, I realize that I have a wonderful husband. I recall what happened this weekend vividly. It began with an uncomfortable feeling like a bad case of heartburn, to a dull radiating pain. The pain intensifies, then as soon as it came on, it left. Then, I can see my husband yelling at me “breathe,” and unable to say a word, try somehow to show him I’m trying, he quickly grabs me and begins to hold me, with a calming voice and rubbing my back and rocking me, screams “breathe.” Then an instant later, I gasp and am able to breathe once again. Afraid to leave me, he says, “you’re burning up,” then in a second I’m ready to vomit and he runs to get me a bucket. I get sick, I’m on all fours, asking him “what’s happening to me?” Then suddenly I’m shaking uncontrollably, freezing. Then, it begins all over again, hard to breathe, burning up, shivering uncontrollably. Then, extreme headache and the feeling of blacking out overcomes me. All wanted to do was to sleep, I hear his voice, “stay awake, just a little while longer,” “stay awake” …then it was all over…

The Babs beast is responsible for my angina; my heart is showing much stress and fatigue. I have had to increase my medications once again with conventional antibiotic treatment and herbals. I am doing what is necessary to restore and revitalize it. Once I am able, in a few weeks, I will be undergoing micro current frequency treatment to eliminate what remains of the beast.

I will overcome this once again for those who are suffering and are losing hope. I will be the success story that gives them inspiration to keep fighting and go on. I will, even if it takes everything I have. The only thing that I regret from this experience is that my husband has had to endure all this too. How much longer is he willing to stick by my side? Will I also lose him as I have lost my old self? How much do we have to lose before the CDC and IDSA come to realize that their standard guidelines should not  be “one size fits all?”

Speculation and Controversy

I firmly believe that all cases of Lyme do not become chronic and, if treated early enough, will recover just fine. However, should the small percentage--which is hundreds of thousands of people who do not fit that mold, and become chronic--be allowed to suffer needlessly?

The CDC and IDSA’s contention is that long-term antibiotics do more harm than good, which leads me to these questions: Should those that don’t fit the “one size fits all” be punished? Why is it that the CDC or the IDSA is not open to the idea that some require more treatment than others? There are those who believe that the chronic form of Lyme is an experiment that went awry in a lab such as Lab 257. Could supporters of the theory be correct in assuming this is why there is an unrelenting position that chronic Lyme does not exist? I don’t know.

All I know is that the ones who continue to suffer just want to be well. If it is a cover up, it doesn’t matter. All we want is to be heard and treated. There are doctors, members of International Lyme and Associated Diseases Society (ILADS), who realize that we are not all the same and are willing to help us by treating us outside of the “rubber-stamped” IDSA guidelines. Must doctors who take their Hippocratic Oath seriously be punished by losing their licenses? Must they have their hands tied for prescribing more antibiotic treatment than has been outlined?

My hope is that the chronic Lyme sufferers be heard and that we would receive as much support as other organizations for various illnesses. My hope is that when people say "well, you look good" they realize the havoc that goes on "under our skin." My hope is that the CDC and IDSA open their minds to the possibility that we are not all alike. For as we are all different when it comes to personality, we are all different when it comes to the way our body’s immune system battles Lyme. The treatment should be based on the individual’s needs, not the outdated CDC and IDSA guidelines. I hope my story encourages people--who are not familiar with Lyme and all its controversies--to become active in our quest to be heard.

Update: July 29, 2010

I had my follow-up with my LLMD yesterday. GREAT NEWS! I am not showing any signs of Babesia! That means I have been Lyme and Bart free since Jan 2010 and now I am Babs free. WOOHOO!

I guess adding the micro current frequency treatment helped get me over that nasty hump. I used it for five days straight in conjunction with conventional abx and naturals. It really kicked my butt. The LLMD thought it may have fried my heart and it took a toll on my adrenal system. I was a zombie for a couple weeks, but now I am Babs free. It was well worth it. My LLMD was amazed that I took such risks, but as long as my body was able, I continued forward. I know there are many of us who would do anything to get better short of selling their souls to the devil. Some would probably do that too.

Lydia Niederwerfer, Colorado

Tuesday, January 18, 2011

I Will Beat These Beasts--Lydia Niederwerfer:Part 1

The Story Begins
After a gorgeous day of picnicking and canoeing, I discovered a tick buried in my shoulder. Who knew that this small insect would change my life? I went to the ER and was given 10 days of Doxycycline just to be cautious. A couple days later, I had the Bull’s Eye rash, mild headaches, minor flu-like symptoms, and a stiff neck. The standard regimen seemed to help because I felt better.

A couple weeks later, I began getting stiff knees. Besides my stiffness, I was experiencing headaches, hot flashes, chills, stiffness, and fatigue. I asked for another treatment of antibiotics and was refused, not only by one doctor, but many. The Western Blot and Elisa tests were defined as negative, only 3/5 bands positive with others described as IND. Despite the tick, all the early clinical symptoms and some positive bands, the doctors refused to think Lyme was to blame. It had to be something else.

After numerous tests to rule out ms, lupus, meningitis, rheumatoid arthritis, celiac disease, etc., my central nervous system functions began to go awry. Quickly, I became completely debilitated. It was as if someone poured a bucket of symptoms over my body all at once. The list was endless: severe nerve pain, one stiff hip, uncontrollable shaking of hands and arms, constant low grade fever, peripheral neuropathy, temporary loss of sight, tunnel vision, chest pains, severe pain all along my spine, flu-like symptoms, loss of night vision, loss of speech, loss of motor functions, loss of coordination, difficulty walking, numbness and tingling of head, hands and feet, arthritis, short term memory loss, loss of hair, loss of cognition, inability to hold urination, diarrhea, and severe migraines. With each breath my entire body burned. I hoped each breath I took would be my last. I became bedridden, severely depressed and unable to do any work. I had to endure the indignity of having to be bathed and clothed by my husband.

Yet, the doctors would not acknowledge the possibility of Late Stage Lyme. It had to be just a coincidence that these symptoms all began since I discovered the tick, waned while I was on antibiotics, and continued to escalate shortly after I finished my treatment. A thought was that I became re-infected with Lyme while my body was still recovering from an initial infection, and that is why I was affected so quickly and intensely. Of this I’m not so sure, for I was very careful after I found the tick earlier.

Finally, an open-minded and thorough neurologist performed an LP (spinal tap) as well as many other tests. The Lyme bacteria was present. He was surprised that I was diagnosed with rheumatoid arthritis despite the negative tests results for RA. He was also surprised that the doctors didn’t factor in the gray chalky pallor of my skin, the fact that I was quite debilitated, and many of the early clinical symptoms of Lyme which were clearly present at the onset. Immediately, an in-home IV antibiotic of Rocephin for 28 days was prescribed; my neuro followed the guidelines as were set by the CDC. By the end of 28 days there was some improvement. I was no longer completely debilitated where I had to have someone bathe and clothe me.

I still looked like a cancer patient undergoing chemo, still had gray, chalky pallor and only half my hair. I still had absolutely no night vision, uncontrollable shaking of my arms, not to mention barely being able to stand upright or walk. It was suggested that I go to Shands Medical Center, which I was told had a reputation like Mayo Clinic in the Midwest. My medical records were sent; I was notified that I would have to undergo all the tests that I had already done again because Lyme disease did not exist in Florida. Then, it was suggested by my neurologist that I see a doctor who was familiar with Lyme disease.

After signing off several medical waivers, I saw a doctor who conferred with Lyme specialists from three different states and began an agressive18-month antibiotic treatment. For twelve months, I endured all the horrible side effects of the antibiotics. In my opinion the puking, diarrhea, constant nausea, migraines, etc. were my cross to bear so that I could become healthy again. Plus, after being entirely dependent on someone else for a while, this was so much better than being completely bedridden.

After a year there was some improvement. My vision had improved a bit, the gray pallor had begun to disappear, and I had a few more good days than bad days. It wasn’t until a Chinese herbal treatment was added to the conventional, antibiotic treatment that I saw quite a bit of a difference within a week. I continued the herbal treatment for approximately another year, working with a NY doctor who specialized in Chinese Medicine and treating Lyme. This alternative route played an immense part in helping me handle a majority of the symptoms and recover from some. This was a new beginning for me; I would actually get my life back. So I thought.

It wasn’t until a few months later that I realized I was left with some residual damage. My mind was not the same. I could not recall a few years of my life. The more I tried, the more frustrated I became. I decided to continue in my financial and banking career, only to find that I could not remember some of the most basic concepts and math problems I had used over and over for years. I found it difficult even managing my budget, checkbook and investments. I was particularly proud of my grammatical and writing skills, which for some reason didn’t come easily any more. I had to relearn and practice some of those skills once again.

If the CDC guidelines set by the Infectious Disease Society of America (IDSA) allowed more accurate tests--which are available--for Lyme outside of the standard Western Blot, and if they were more flexible in giving additional antibiotic treatment beyond their set guidelines, I may never have come to that bedridden state. I may never have experienced the long lasting effects of Lyme. If more doctors were familiar in the treatment of Lyme, I may have been able to continue with my passion for teaching and informing people about their financial goals. I would have continued to work as much as I wanted to without repercussions and without experiencing minor flare-ups. The possibilities that--before I became ill with Lyme--were endless.

Six Years Later, Battling Lyme Disease Again

After almost six years of doing well, I had surgery in April 2009 and was given steroids. Steroids suppress the immune system. A simple and typical surgery ended up with several complications. I had lost complete hearing in one of my ears, and the ENT had no explanation. A simple surgery. I should have recovered in three to four days, but the days became weeks. 

A week after my surgery, I was progressing poorly. After another week, the suggestion of placing me in the hospital was mentioned. I refused. My experience with the medical community left me with distrust, and I’d have to be on death’s doorstep before I'd allow anyone to take me to the hospital. I could sense something was seriously amiss. A few months passed and I refused to even consider Lyme disease again.

Some of the Lyme symptoms such as the nerve pain and stiff knees returned. Then began the drenching night sweats. Shortly thereafter, I awoke to find that I could not hear a thing. The ENT still had no explanation, and inner ear surgery was suggested. Since my earlier experience with Lyme and its many complications, I set out to look for a doctor who would consider testing me for Lyme and other tick-borne illnesses.

Boy, was I surprised--any mention of the word Lyme, and I was immediately turned away. I set out to find doctors who were treating patients with Lyme. I made a list of five in my area, ranging from three to five hours away. I came up with dead-end after dead-end. They were simply too overwhelmed with patients seeking medical attention for Lyme, or they stopped treating them for fear of losing their license. I came to the last name on the list. He was a two-hour drive from home. His fee began at $220/hour and was not covered by insurance. I was so frustrated. How in the world was I able to afford his fee?

Part 2 Friday.

Friday, January 14, 2011

Another Battered Soldier--Holly Heisey

I’m twenty-four and I’ve been sick since I was ten. I got sick on the first day of fifth grade, and nobody believed it wasn’t because I didn’t want to go to school. A month later my parents pulled me out and I was homeschooled. I went through countless doctors, and that’s terrifying when you’re an adult, let alone ten. I found a nutritionist who helped me get well enough to go back to sixth grade, but by then I had many allergies and physical weaknesses that kept me from really fitting back in.

I stayed mostly healthy until eighth grade, when I got sick all over again. I had to leave school in the middle of the year. I was having panic attacks (of course it was all in my head!), short breath, vertigo, and I always felt like I was going to be sick or pass out. Another round of doctors ensued, one of whom wanted to admit me to a mental facility because he was convinced I was suicidal. Tell that to a fourteen-year-old.

I finished eighth grade at home and continued to homeschool, but I also continued to get worse. Finally, my family found out our home was infested with stachybotris, a deadly toxic mold. We moved, and we have nothing today that we owned before fall of 2001. It was a miracle that we got out relatively unscathed. We thought all our health problems were over.

Tuesday, January 11, 2011

A Series of Miracles--Victoria Bylin

"Something terrible happened to you.”

These are not words you want to hear from an ophthalmologist. At the time I was sitting in his fancy chair in a dark exam room, my eyes red and hurting, and my vision distorted in the way of pebbled glass. I had no idea at the time and neither did the ophthalmologist, but this was the beginning of my encounter with Lyme Disease. By a series of coincidences--I’d call them miracles--I was blessed to be diagnosed early and treated successfully.

My Lyme ordeal began while I was working at the computer. I blinked and thought, “I need new glasses.” A few moments later I looked in a mirror and saw that both eyes were bloodshot. I figured I had conjunctivitis and met a friend for lunch as planned. By the end of the meal, my eyes weren’t just red. They hurt every time I changed my focus. That evening I developed the strangest fever I’ve ever had. It spiked at 103 degrees and then disappeared.

I saw an ophthalmologist the next morning. He diagnosed anterior uveitis and started me on steroid eye drops and dilating drops. He suspected the problem had been caused by exposure to cleaning chemicals, but that seemed unlikely to me. I’d cleaned the bathroom a few days before, but I’d used the same products I always use. When my eyes improved only slightly with treatment, the ophthalmologist referred me to my regular doctor for blood work. Anterior uveitis can come on for no reason, or it can be related to autoimmune disease.

By now I was feeling sick. My knees ached. I had stabbing pains in my neck. Fevers came and went. I couldn’t think clearly. I tired easily. I developed a Bell’s Palsy-like facial numbness. Something was clearly wrong, and my family doctor was on vacation. This is where God opened a door. I was working for a dermatologist at the time. She stepped in and wrote the orders for blood work. By an amazing coincidence, she consulted with a second ophthalmologist who said, “Be sure to check for Lyme.”

Sure enough, the blood work came back positive for Lyme Disease and I was started on antibiotics. There were good days and bad days until I had another miracle. I’d been on Minocyclin for ten days when I got the call that my mom was in the ICU in Los Angeles. I was in Washington DC. She had severe COPD and I knew this was the end. I had to get on a plane no matter how I felt. I went to sleep with a prayer on my lips, and I woke up feeling normal. My mom passed away five days later with her family around her. My symptoms never came back.

When I look at my Lyme experience, I’m extremely grateful for an early diagnosis. Only one doctor thought, Lyme, and he wasn’t even someone I’d seen. It was a coincidence, a blessed one, that led to my diagnosis. Not even the Infectious Disease doctor I saw at the very end of the treatment would have suspected Lyme with my eye symptoms. I never had a rash, don’t recall a tick bite, and had eye trouble before the other symptoms started. On the other hand, I lived in northern Virginia across the street from a park where deer grazed, and I later learned my neighbor also had Lyme.

Education is everything with this disease. When I returned to the first ophthalmologist, he told me about another patient who’d presented with anterior uveitis just like I did. This time he tested for Lyme. Sure enough, the blood work came back positive and she received early treatment. She benefited from my experience, and I hope other Lyme sufferers do too.

Victoria Bylin, Kentucky

Friday, January 7, 2011

I Will Make It Through--Tiffany Gonzalez: Part 2

What I saw and heard next changed my life. The news segment was about a documentary movie called Under Our Skin. They were saying how all these people were misdiagnosed for years, and eventually found out they had Lyme Disease. I couldn't believe my ears! While watching, I felt an instant connection with these people. They sounded like me; our stories were so similar. I felt like that was me on the TV--but wait--I had tested NEGATIVE for Lyme in the past.

The next day I couldn’t get the news segment out of my mind. I was ridiculously giddy. My naive self feels stupid about my excitement now. If only I knew what I was in for. I did online searches for the movie and looked up Lyme Disease in Chicago. I found the wonderful ChicagoLyme website and called their contact number. I left a voicemail for the woman, and didn't really expect a call back. No one believed me before, right? Why would someone call me back? Well, I got a call back from Lauren within a half hour. Wow! It turned out she was in the news segment. Her whole family has Lyme Disease; she lived right here in the suburbs. She directed me to where I could go for the much more accurate test called a Western Blot Blood Test done by IGeneX.

That day, I sent out a FB message and email to my friends, inviting them to come see Under Our Skin with me. No one responded. Who can blame them? They didn't know anything about this "Lyme" thing, and it didn't affect them, so why should they care? I get that. I do. At least my little sister Adriana came with me. Thank you! We saw the movie and I think I sobbed through most of it. I felt like the people on the screen were telling my story, without even knowing me. It was a crazy experience.

I went for my Western Blot test and waited a month for the results (that's how long it takes). I had prepared myself for the grueling results and expected them to be positive. I had all the symptoms. Well, my doctor read--misread--the results and told me they were negative. I cried. I cried so much. I was glad I didn't have this horrible disease, but then what was wrong with me? I left with my bittersweet answer and never felt more defeated. Now I was depressed.

About three months later, I went to the Lyme Support group to see if I could sell some "Awareness" jewelry. Lauren heads the group and asked to see my Western Blot results. We went through them together and her face went blank. She just looked at me with this face of “uh-oh,” turned to me and said, "We need to talk to Dr. ***** right now and you need to see a Lyme Literate doctor right away." I started to shake, had a minor panic attack and walked out of the room. The support group is in the same office as the doctor who ran my Western Blot.

After re-reading my results, Dr. ***** pulled me into a room, sat me down, and told me she was so sorry. She had read the results wrong and I was in fact POSITIVE for Lyme. I was bawling at this point and just wanted to collapse. I could hardly breathe and for a moment, really wanted to die. She was crying too and was very apologetic. It was surreal, sad, and stressful. Was this really happening? Or was this another bad dream? I hold absolutely no ill-will for this doctor. It was a mistake and although I was angry for a moment at what was happening, I forgave her right away. I love her! She has been a blessing in my life.

Now, I had to come back to terms with the results being positive. But this time, I had a huge amount of support around me. I had new friends who would be there to help walk me through it. I was on solid ground, even though it felt like quicksand. This was a bittersweet diagnosis, because as much as you want an answer, this answer told me I’d be screwed for a very long time--possibly forever. The “Old Tiffany” probably wasn’t going to come back, at least not for a long time. I was going to be the “Always Tired, Always Hurting, Always Home, Boring Tiffany” for an indefinite amount of time.

My friend helped me get in with her LLMD (Lyme Literate Medical Doctor). I got an appointment two weeks later with his PA. Do you have any idea how amazing that is? My doctor has a 400 New Patient Waiting List. I was very lucky, and I've been in treatment since October 2009. I’m already on my third protocol for treatment.

Although I probably got the Lyme from the tick bite, I could’ve also gotten it from a horsefly bite or other insect. I used to go up north to Land ‘O Lakes, Wisconsin where I had been bit many times by many little punks.

Lyme disease is an infection caused by Borellia Burgdorferi, a type of bacterium called a Spirochete carried by ticks, fleas, deerflies, horseflies, and mosquitoes. Lyme disease has three stages, and at any stage Lyme disease is very dangerous to somebody’s health. Stage One is known as the early stage, Stage Two is called early disseminated, and Stage Three is called Chronic Lyme. Because it "hides," most people take years to get the proper diagnosis and it ends up being too much, too late. Mine took six years.

Along with Lyme come a lot of “co-infections.” The co-infections are what make most of us Lymies really sick. They are called Ehrlichia, Babesia, Bartonella and some others. There are parasites as well, which I also just tested positive for. Lyme and its punk friends may be caused by a little itty bitty insect, but causes so many big problems. It’s led me to Hashimoto’s Disease (thyroid disease), endometriosis, ovarian cysts, Reynaud’s, daily migraines, GERD, anxiety, and a ton of other common Lyme issues.

As you can imagine, it’s a tough disease, and insanely hard to treat, making you feel like you’re going insane! It’s hard, it’s REALLY hard. There is no known cure, and no one way to treat it. Most of my Lymie friends are on months of antibiotics, and most get them by IV. Unfortunately, Infectious Disease Guidelines say there is no such thing as Chronic Lyme Disease and believe it can be cured with two weeks of Doxycycline antibiotic. It’s very frustrating and can leave many of us Lymies feeling hopeless. I go back and forth with those feelings--depends what day it is. Because of the ISDA’s ridiculous guidelines, our treatments are not covered by insurance. My bill with my doctor is already over $2,000 and growing. That is all out of pocket plus my medications and supplements that insurance won't cover--or partially cover. Just one of my medications, Mepron, costs me $230.

I try to sell my jewelry to help pay for the medical costs. But even that's hard, because my hands hurt and cramp too much to make more jewelry. It's a catch-22.

One of the closest “Lyme Literate MD’s” is in Fond du Lac, Wisconsin . I drive three hours each way to see him. I just got diagnosed in October and have been told I have at least another year+ of treatment. Right now I take more than 45 different medications, supplements, and shots, in hopes that one day I will be at least a little better. For now, I mostly stay home and live life vicariously through online friends, wishing I could do what they’re doing. Wishing that I could go out for at least one night of fun with friends or family, and not be laid up in bed the next day for over 17 hours. I have hope, I have strength. Even though it may not seem like it at times, I will make it through.

Tiffany Gonzalez, Illinois

Tuesday, January 4, 2011

I Will Make It Through--Tiffany Gonzalez: Part 1

In the summer of 2004, I was bitten by a tick. I was told by my doctor’s office that I had nothing to worry about because the tick hadn't been in me long enough to do any harm. Usually the protocal is 24 hours; if it's in you for less time they THINK you won't have a problem. They told me to keep an eye out for the classic "bull's-eye rash." If I got that, call them immediately. I never got the rash, so I didn't worry.

Not too long after the bite, I started with horrible headaches, abdominal pain, ringing in my ears, dizziness, constant flu-like symptoms, and over the years began getting joint pain, muscle pain, and extreme fatigue. Neurologic and cognitive issues became out of control. Things got much worse after a bad roll-over car accident I had in 2006, jolting my entire health system out of control.

Last summer (2009), I started forgetting what I was saying in the middle of every conversation. I started making myself talk really, really fast, just so I wouldn’t forget what I was talking about. My throat felt like it was closed up. I'd choke for no reason. I began dropping things, too. My hands twitched like crazy and I would sit on them all the time so no one would notice. They also began to cramp up and close. I would make myself hold large objects thinking that I could prevent the joints from wanting to close up. I had difficulty holding the steering wheel. My thighs trembled all the time and my knees would give out.

I had been at my job for four years at this point, and I knew my duties inside and out. I could do my job with my eyes closed; however, I would get confused doing something as simple as checking in a patient. I would get frustrated with myself all the time. Dyslexia became more common for me. I had anxiety often, and over the smallest things.

My fatigue was so bad I would sleep in my car at lunch, or go home and take a half hour nap. I couldn't (still can’t) wake up in the mornings, and when I do, it takes my body forever to loosen up. I tend to walk like an old grandma, and my ankles don't bend. Really, I thought I was losing my mind. I started to cry often at the loss of "myself" and not being able to do a thing about it.

I went as far as letting my doctor give me injections in my wrists, hips, lower back. They were excruciating and I’d cry the entire drive home. Was this really my life? I eventually stopped the treatment when they wanted to do injections in my neck. No way! On to the next doctor please…

In six years I had been to over ten doctors trying to find answers. Most of them told me nothing was wrong with me. I had so much blood work that I’m surprised I’m not anemic from all the blood they took. My test results were always in the perfect range. Eventually, they tested me for Lyme Disease but the test came back negative (I now know that 70% of the tests show false negatives). 

Over time I was sent to see a sleep doctor, neurologist, gynecologist, psychiatrist, someone for my stomach, etc., to address each of the issues. For the longest time they all kept saying nothing was wrong. One said I was just depressed from the car accident I had, and they told me my aches and pains were a result of the depression. “Here, take this Cymbalta. It’ll help make you better!” Ick. That didn't work and I left my doctor wondering if I was really going crazy.

How can I be wrong about what I felt and what I was going through? I trusted the medical community, but I was so confused. That in itself can lead you into a depression. Eventually one of my doctors listened a bit and acknowledged that I did have true muscular pain and joint pain. He diagnosed me with Fibromyalgia and Chronic Fatigue. Finally something more than the usual “There’s nothing wrong with you” diagnosis.

Lyme is usually misdiagnosed as Parkinson’s, arthritis, MS, lupus, Fibromyalgia, gout, ADD, Epstein Barr virus, Lou Gehrig’s Disease, Chronic Fatigue, and many others. I knew there was something more to just having Fibromyalgia, but how could I prove it? How could I prove what I had--and felt--was real? How could I make others understand that I wasn't just being lazy, and that my fatigue was beyond my control?

I had been working out with a trainer, lost weight, and was on a healthy path. During that time I broke down at the health club because I got to a point where I could do less and less. Eventually I could only walk on the treadmill, but then that became too difficult for my joints. This was not a weight issue. I know it's hard for some to believe. My diet was great. I was on a good track. So why was I getting worse?

Last summer, while in the midst of my worst symptoms, I was watching the news. Those who really know me know I love Channel 7 News. I never change it. For some bizarre reason I didn't like their "Special Segment" and changed the channel to 5. Must’ve been a God thing--I was just flipping through--because I heard the words "Fibromyalgia, Chronic Fatigue, Parkinson’s, etc." I immediately turned up the volume, and what I saw and heard next changed my life...

Part 2 Friday.