My Introduction to Lyme Disease
I Will Beat These Beasts: Part 1
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 the Beasts Again
After almost six years of doing well, (I was functioning at 85%) 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?
I Will Beat These Beasts: 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. (At this time, I was function at 110%)
I did well for a few years at 110%. Then after a few traumatic and stressful events in my life, I began to have Babesia symptoms. At my mother’s funeral in January 2014, I felt like I was about to pass out. (I did not know that this was a sign of my downfall in my health. My body gave me signals that something was wrong, I began having night sweats, chills and was quite tired, it wasn’t until I began having some almost blackout spells that I went into the doctor’s to get a checkup. This was when it was confirmed that I had to return to treatment for Babesia.
After a year of just working on myself emotionally and physically, I am doing very well. I am working, raising a puppy, regularly walking and hiking, and have been working on a few quilting projects. I had to step back from many of the things I did in advocating for Lyme Disease and working on my website. I now use quilting as a way to escape and rejuvenate from life’s stresses. I cannot wait until I am able to get back to working on the updates to this website and adding a few more things in spreading the word on Lyme Disease awareness.
As published on suspense author, Brandilyn Collins’, site, Lyme-Over the Edge, “I Will Beat these Beasts” on July 27th and July 30th, 2010.