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The only metaphor I know that makes any sense in trying to describe how I have been feeling since the beginning of the New Year is this: I feel like that for about the past three months, I have been holding my breath underwater, and I am just now breaking through to the surface. Hell, I know this is an old and used up cliche/metaphor. But it is a good one. Maybe it is also like having your head under the covers for too long; it gets hot, you can see, but you just want to come out for fresh air.
As I shared here Lyme test, after 4 years of treatment, I have tested positive again for Lyme. This is not from a new / recent tick bite. This is from the infection I have had all of these years. That was at the beginning of March. So in order to catch you up and not in the really long boring way, here are the highlights:
March 2 – I’m suffering from crushing fatigue and have been for several months. My attendance at work has been patchy at best. My doctor decides to put me on medical leave (honestly, such a relief). Tests for Lyme disease, Epstein Barr Virus, and thyroid are conducted.
March 8 – Results are back and I am once again (3rd time) postive for Lyme disease. The EBV is also reactiviated. Thyroid is ok (other than the Hashimoto’s). I’m a little freaked out that I’m positive for Lyme again. But this is at least the 15th or more time in the past 7 years the EBV is active again. All of my symptoms in the past few months have pointed these things, but since I feel bad that I am not at work, at least the tests validate my need for rest.
March 15 – Follow-up with my doctor. I haven’t been on any antibiotics for about 18 months. I’ve been treating the Lyme holistically. And I am happy taking that route. However, with the Lyme being active and in force, we decide that another round of an antibiotic I haven’t tried might be in order. I am put on another week of medical leave and I add a six weeks regime of new ABX to my treatment.
March 27 – I head back to work, and while I am glad to get back, I am also very, very aprehensive. While at home, I rested a ton. I was able to keep to my routine treatment wise. I actually could do a few things such as sweep the floor and make dinner (not every day but still!), things I can barely if at all manage while working a full-time job. I also realize that for the past 6 months, since school started back in the fall, my like has been so limited due to the illness and to the severe fatigue. In fact, I realize that my life has literally become this cycle, Rest, Work, Rest. Every afternoon evening of a eork day is Rest. All weekend: Rest. No outside functions, no regular activities others can accomplish such as grocery shopping, running to the bank, etc. My world has become so limited, and I am beginning to understand that the approach I have used in tackling Lyme and friends for the past 4 years is just no loner working.
April 1 – I did alright after this past week at work. But I can feel the fatigue sneaking back in. I will see my dotor for a 3 week follow-up on Wednesday. We’ll see how and if the medicaton is working and if it is helping. If I had to give a report today I would share that really not much has changed. While I do feel a smidge less fatigued, I don’t know if that it because I just came off 3 weeks of complete rest and minimal stress or if indeed the medication is helping. I’m hopeful but I just can’t be too invested in the outcome.
Today – I have to rest. I have to physically and metally prepare for the week ahead, both work and otherwise. I’ll plan on cooking us dinner this evening and possibly do a bit of laundry but only if I can manage it. It’s a rainy day and so I’m dealing with joint pain and just overall soreness and pain so we’ll see if anything actually manifests.
I hope you and yours have a wonderful Sunday! Peace to you – Belle
Dear Western Medicine,
While you and I have had a long, steady and committed relationship, it hasn’t always been a bed full of roses. However, I would like to begin by celebrating what has worked for us. First, thank you for delivering me into this world safe and sound, and making sure my mom had a speedy recovery. Also, thank you for doing this for my two younger brothers as well. You had a good heart at the beginning.
Your diligence and kindness did help me through my teenage years; I wasn’t sick very often so there wasn’t much of a strain on our relationship. Things were simple then, and we had a strong bond. I knew I could count on you if anything minor would happen like a broken arm or leg (don’t all kids long for a cast?) Check-ups went well with no major injuries or illnesses, well except for a severe case of mono and strep in my mid-20s.
We coasted along you and I, only periodically needing to reassess our relationship, always determining that we were continually committed to one another. But then things started to become tenuous. In 2009, I began suffering from fatigue and malaise. At first, you told me that I was having another episode of mono. I believed you. I rested, and I got better. Yet, this cyclical issue continued for 3 years. The answer for my sickness was always the same: mono – again. By 2011, you diagnosed me with Hashimoto’s. Ok, I thought. All relationships go through periods of growth and change. Compliantly, I added thyroid medication to my routine and assumed that I finally understood what was happening to me. But our relationship continued to be rocky.
Alas, Western Medicine, you deluded me. By the fall of 2012, I had already experienced 4 relapses of mono or Epstein Barr Virus and the fatigue was getting worse and lasting longer. I began having daily headaches and joint pain. The lower back pain and the neck pain were the worst. I began having trouble getting through a day at work. I saw 7-8 doctors of yours who all professed a specialty. I put my faith in these doctors. Batteries of tests were run. And yet, every result came back negative. How could you fail me this way?
You took away years of my life! If only I were diagnosed in 2009 with Lyme disease (which I tested 100% CDC positive for in March 2013), maybe, just maybe, I would not now have chronic Lyme, Chronic Fatigue Syndrome, and chronic EBV along with a few other choice conditions. If only you would have seen me as a person, as a person dealing with REAL symptoms, as a whole person rather than just parts, maybe we could have stayed together and worked things out.
But you pushed me aside for bigger and better things, for easier diagnoses and for illnesses detected and treated in the 8-10 minutes you are able to give each of your patients. You told me that my symptoms weren’t real, that my daily headaches were caused by dehydration, that my neck pain was from carrying my purse on the same side all of the time. You told me that chronic EBV doesn’t exist. You did MRIs and told me that there was no reason for the neuropathy in my feet. I was sent on my way at every turn without answers and most of all, without any support.
It was because of my own perseverance and my own belief that indeed there was something wrong I was able to get a correct diagnosis finally. That all of the symptoms I was experiencing were in fact REAL. And just because you couldn’t figure out what was going on didn’t mean it wasn’t happening to me. But even after my Lyme diagnosis, I stuck with you, scared to go on without you and your “modern ways.” I subjected myself to the self-doubt, to the scrutiny of a multitude of Western Medicine doctors, including my Endocrinologist who, when I told her about the Lyme, repeated my Lyme diagnosis in disbelief and disdain.
Even after all of this time, you are able to deny me the care of another. For more holistic and natural approaches, I can’t use my health insurance. You dictate that Lyme disease be treated with only 3-4 weeks of antibiotics and that is only if one of your doctors knows even a smidge about Lyme (and most know nothing).
It is time to let me go. I need to move on, and I need the opportunity and the freedom to explore other relationships. I deserve the best possible care for the chronic conditions I am experiencing right now. I need to be believed and not neglected because I don’t fit into the role of the good patient you want me to be. So, from here on out, we part ways.
While I wish you the best, my main hope is that you can someday soon expand your horizons and build better and more positive relationships in the future.
I woke up this morning, early, and I was really excited because I didn’t have a headache! Yippee, thought I. And then I realized that I’ve had a headache for over a week now. Maybe 10 days? It subsides off and on, but I think it is the same damn headache. Maybe not, but that really doesn’t matter all that much. The pain matters more.
It may be the insane weather we are having. Last week at this time, it was 80 degrees. Then by Sunday, it was 27 degrees out. And today? A rainy and moist 75. Seriously. So, yeah, there’s that. It may be that the semester just ended and even after 16 years of teaching, it’s still pretty stressful. More stressful when chronically ill. So, there’s that too.
There have been a few days these past few weeks where I just keep taking medicine and hoping one of the many selections will just give me some relief, and periodically something has. Usually it is maybe an hour or so at a time. Then, the monster returns. It isn’t a migraine. It’s just a constant pain inside my skull.
Before Lyme disease, I rarely had headaches. The only headaches I experienced were either alcohol induced or hormonal. Indeed, I was a lucky duck. My mom has had issues with headaches her whole entire life including migraines. And my husband also has migraines periodically that lay him out for most of the day/night.
Then, in the fall of 2012, I began to have daily headaches. Not crippling, mind you, but just enough pain to not be able to ignore. Every day at work, by noon, I could feel it coming on (or maybe it never really went away). Sometimes, nausea would accompany the headache. The Daily Headache continued for months on end. Of course, there were a multitude of other symptoms going on but the headaches were something quite new and stood out more than say the fatigue or the periodic joint pain.
When I saw the Worst Infectious Disease Doctor Evah (although statistically, ID doctors are NOT LYME LITERATE) in January 2013 with a solid 25 symptoms including the onset of the new Daily Headache, he told me to drink more water (since I was hospitalized with a horrible kidney infection in 2006 I drink almost a gallon of water daily). The ID doctor dismissed every single symptom I explained to him but the bitterness of that particular doctor visit is for another time. Needless to say, almost all of my symptoms were classic LYME DISEASE symptoms and luckliy, I was diagnosed (and CDC positive) less than 6 weeks after this visit with the dismissive ID doctor. Anyhoo!
As I moved into oral antibiotic treatment, the headaches continued except at some point, I can’t pinpoint when, I began to have migraines. WTH! Migraines really suck! I now can empathize way more with my mom and my husband and others! Hours and hours of pain, nausea, ugh. For a while, and I can’t be more specific because of my short-term memory issues (LYME symptom as well), I had daily headaches and then migraines in between. Good times. I am so sorry if you suffer from headaches and/or migraines, my peoples!
When my LLMD took me off of antibiotics full-time last November 2015, I still had the headaches. And the migraines. But, slowly and surely, these daily headaches and the migraines began to let up a bit. So, for the past few months, probably since say June (again, short-term memory loss!), there’s been a reprieve from the daily headache. Since June, I’ve had maybe 3 full-blown migraines. This has been progress! I think that this progress has been the result of many things coming together at once, such as Lyme treatment (after so many years going untreated) and dietary changes.
But, since Thanksgiving, my diet has been seriously not so good. I had cut out all sugar, carbs, cut down on wheat and corn products. Oh, Thanksgiving. I mean, I haven’t gone totally CRAZY with eating sugar, etc. but I have been drinking more soda and well, I sure haven’t been grain-free. I plan on getting right back on my diet after Christmas. I can see now that it has helped me to control some symptoms and while it was a bit of an adjustment to new eating habits, it certainly is worth it.
Like I said, this headache started about a weekish ago. On my last day at work, before Winter Break, I sat in my classroom, in the dark, just trying to work through the pain (no worries, I didn’t have students LOL). Saturday was much of the same. At least this week the headache hasn’t been a full-blown migraine but still. I’ll tell you though, I most definitely appreciate the time I have without headaches now. Pre-Lyme, I never noticed how wonderful it is NOT to have a headache. Chronic Lyme disease continues to teach me lessons. Hey, just trying to stay positive! 🙂
And, here comes my little friend. Back again today. Time to rest a bit.
Toodles friends – B
** “I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **
I’ve always had sensitive eyes. My eyes are blue, and so anytime I am outside, even on a cloudy day, I have to wear sunglasses. But since contracting Lyme disease, the light sensitivity has increased, and I have to be careful about too much exposure to light, both outside and inside.
With this light sensitivity sometimes comes a migraine. I never had these either before Lyme disease. Now, I have daily headaches and periodic cycles of migraines. I have found that light can be a trigger for a migraine. I am especially sensitive to fluorescent lighting which is pretty much everywhere!
So when I was given the opportunity to try out Axon Optic eyewear, I jumped at it. Axon Optics offers special glasses and sunglasses for light sensitive migraine sufferers. As a part of the review, I was able to pick from 3 different frames. Axon offers their eyewear with prescription and without. As I wear contacts most of the time, I opted for the glasses without prescription. Axon offers a wide variety of frames both modern and classic making it easy to select a pair of glasses that complement the wearer’s face shape.
When the glasses arrived, I was really excited to try them out, especially at work where all of the lighting is fluorescent. The glasses were the exact frame I had ordered and the lenses were a tinted rose color. Hmm, I thought. These will be pretty different from other glasses most people wear.
At first, I was hesitant to wear them while I was teaching. I teach teenagers and well, as we know, they are not forgiving when it comes to fashion. Again, the rose tint makes these glasses stand out. But one morning while at work, I felt a bad headache coming on, and I bit the bullet. I began wearing them about 8 a.m. Pleasantly surprised, I received many compliments on these glasses from both co-workers and students!
I wore my glasses all day that day, and I kid you not when I say that I began to experience relief within a few minutes of putting them on. It was almost like a protective screen immediately came down between my eyes and the lighting. The rose color was soothing. Since being diagnosed with Lyme and chronic migraines, I do have migraine medication that I can take as needed. But since receiving my Axon Optics lenses 2 months ago, I have only had to take the migraine medication twice.
I carry my glasses with me everywhere I go now. When I begin to have even the slightest headache, I pop on my Axon Optics glasses. These glasses are also very versatile; I wear mine both inside and outside in the blaring sun. No need to switch over to sunglasses when I leave work. My Axon Optics do the trick!
If you suffer from migraines or even light sensitivity, I would highly recommend a pair of these glasses. Not only have they helped me reduce the number of headaches and migraines I experience, they have also helped me to cut down on the medication I have to take. In the future, I am going to invest in a pair of Axon Optics prescription glasses so I can have a pair to wear with and without my contacts in.
P.S. Right now, Axon Optics is offering Free Shipping on all orders through November 15th!
Thank you for your time! -B
I am sure everybody hits points in their lives when they sit back for a moment and reflect on where they are, what their plans are for the future, how will they get things accomplished, etc. I know I used to do this periodically. Reflection has always been a part of my life. Pre-Lyme disease, I was always positive that the future would always be filled with unending growth and opportunities, both personal and otherwise.
Now? I’m in the midst of trying to treat a real illness, one that has been in my body silently and insidiously taking over. Lyme bacteria – a corkscrew-shaped bacterium called Borrelia burgdorferi – has played the Lyme Long Con with me and hundreds, I mean THOUSANDS, of others. For years and years it has slowly but surely, patiently, illness after illness, entered almost every single system in my body.
But the CDC and IDSA (Infectious Diseases Society of America) panel are also complicit in this LONG CON, the Lyme Lie, the Lyme denial, against all of us. For years, the CDC has claimed that Lyme disease is difficult to contract and easy to treat. Yet, in the past 40+ years, science has confirmed that there are 300+ strains of Borrelia bacteria with Lyme being merely only one of these 100s of strains that are all transmitted by ticks, fleas, and mosquitos worldwide.
This is so ludicris at this point that I honestly don’t understand how the CDC can still be promoting this misinformation. Just a few years ago, the CDC changed its number of newly contracted Lyme infections from 30,000 to 300,000 yearly. Yes, from 30,000 to 300,000!! A YEAR. And many believe that this number is much lower than actual cases each year. 300,000 PER YEAR. Let that sink in. Just to give us some perspective, there are about 50,000 new HIV cases and 200,000 breast cancer cases each year in the US. Yet, almost no money is going into researching Borrelia complex diseases.
I want to scream that BORRELIA INFECTIONs are real. LYME IS REAL. CHRONIC LYME IS REAL. CHRONIC LYME IS HAPPENING TO thousands of PEOPLE, not only in this country but globally as well! As patients, we need to have access to treatment, individualized treatment, treatment that lasts more than a mere 2-4 weeks of antibiotics. You may say, but what the heck does this have to do with your first paragraph. Well, everything, my friends.
Lyme has stopped me, as well as thousands of others, in my path. It has stalled me for awhile, off and on for years, and I unknowingly placed faith in the CDC, the American healthcare system, in my doctors, faith in health insurance companies. I placed my FAITH in these entities sure that they would find out why I was dealing with strange health issues off and on over the span of 3-4 years. They didn’t.
Then, I put faith into the fact that once diagnosed, I would be treated, and I would have a recovery plan. Alas, getting a Lyme diagnosis almost means nothing. The USA has done absolutely nothing to improve research, diagnosis, nor treatment since the disease was discovered (it’s been around for thousands of years) in 1975. Yes, take that in. 1975. We know almost nothing more now than we did then. In the meantime, THOUSANDS of people have gone undiagnosed and untreated. Thousands have been misdiagnosed with MS, Lupus, and ALS, along with other diseases and gone untreated for Borrleia infections. Why??? The treatment for Lyme and other Borrelia infections has not and cannot be easily monetized – YET. So we wait. And 300,000+ and more become infected every single year.
So here I am. Halted. Stopped for much longer than anticipated. Perhaps, stopped here permanently. I know, I know. I need to be positive. I need to buck up. I need to stop focusing on my illness. Most days, I can manage this. But this past month, not so much. Sometimes, we just need to GRIEVE a loss.Sometimes, we need to be ANGRY. Sometimes, we just need to BE.
If you would like more information about Borrelia infections (this includes Lyme bacteria infections) then please watch Under Our Skin. It provides some basic information regarding Lyme disease as well as information about how the CDC and the IDSA are working in tendem, not only to discredit Lyme doctors and patients daily, but on a much larger scale, how these two organizations are undermining the most dangerous health crisis of our time.
Please be careful. LYME IS EVERYWHERE – WORLDWIDE. Take care, my friends – B
This is an excellent in-depth article about our healthcare crisis here in the USA in regards to Lyme disease and co-infections. Please take a few minutes to read and process the continued negative results of the CDC not addressing this EPIDEMIC.