When the anniversary of my diagnosis of Lyme disease comes along each year, I get a little freaked out. It’s irrational. But it does make me pause and reflect (which isn’t a terrible thing to do necessarily).
After about 4 years of experiencing what appeared to me as random and some migrating symptoms, after seeing 7-8 different doctors, mostly specialists, after having an MRI, a variety of blood test (more than once), and after becoming more and more ill, I lucked into seeing a doctor who tested me for Lyme disease. By the time I was diagnosed, I was very sick; I had severe daily headaches, joint pain, numbness in my feet, insomnia…the list goes on.
This March, it has been 6 years of treatment for Chronic Lyme disease. Ten years of being severely ill. And yes, I have seen improvement. The lasting symptoms that seem to never end are the chronic fatigue, the joint pain, the insomnia, and the memory/processing issues. Considering how long this list was in 2013, I can only be grateful for the progress I have made.
However, this anniversary also reminds me of what I am still struggling to deal with on a daily basis. That’s the part of this that gets me down sometimes. It’s hard not to compare the Before and the Now. And this comparison is only amplified by the years that have gone by.
The lasting and most enduring symptoms of this illness, at least in my case, are the fatigue, the insomnia (it’s so bad right now), the joint pain, and the memory/cognitive issues. Sometimes, it’s tough to see if there is any progress. I feel like these are things my doctors and I have been working on for the past 6 years. While I hope they become less severe, I also simultaneously realize this may be as good as it gets. I’m not sure I am at the acceptance stage in this case.
I hope spring is opening its doors in your world. Here in Houston, we are enjoying the mild temperatures before the real heat begins at the end of this month.
Howdy ya’ll! I hope your summer is sailing along smoothly. I always feel extra lucky because as a teacher, I have summers off (kinda). The first 6 years I taught, I worked in the summer. I spent 3-4 summers as a shift manager at Starbucks (I had been a manager for them before teaching) and then I spent about 3 summers teaching as an adjunct.
After that, sometimes, I would teach a summer high school course. This wouldn’t be all summer, just 3 weeks. And some summers, I attended conferences and or week-long workshops. However, these past 4 years, I haven’t done anything of the sort. I struggle to keep my summers work-free so I can rest and try to get my health on track.
I now marvel at the things I used to do before getting severely ill. I also used to adjunct during the school year, usually teaching one evening college class each semester. No can do now. And so, because of illness, I have definitely modified my activities.
But back to this summer. So some things I’ve been able to do that I normally cannot manage while working:
1. Hangout with friends. Nothing fancy but stuff like dinner and lunches. Just visiting and spending time together.
2. Go grocery shopping! I’m so not lying. This chore can be so overwhelming and so full of anxiety for me I just cannot manage it. So I’ve actually sort of enjoyed (except the bill!) going grocery shopping for us this past month.
3. Spend time with family. With energy so limited while I am working full-time, it is rare to just get together with family and visit. It’s a total gift to get to do this unplanned.
4. Be upright and not in pain after 4 p.m. daily. Sure, I still have to rest. And yes, I do still have pain periodically any time of day, but it’s nice to know that some days, I can be up and active in the afternoon, on a weekday!!!
So as you can see, there’s nothing too crazy going on here this usmmer. But I’m glad I have the time to do a few cool things I can’t do normally.
I’m off to cook some dinner for my husband. I forgot to add that to my list! 🙂
Happy Summer, friends. Talk to you sooner than later. -b
*I’m now in year four of Chronic Lyme disease treatment. I wanted to share my journey in trying to get and find a correct diagnosis (not my treatment pilgrimage mind you). Please know that my experience has actually been much easier than many other Lyme patients. Some visit 20, 30, 40+ doctors trying to find a root cause for their symptoms.
I searched for answers for my illnesses from 2009 – 2013. I had many doctor visits with many different types of doctors, some simultaneously. However, I am trying to do a separate post for each doctor. If only all 7- 8 doctors would have paid attention to one another and to me, maybe I could have started on my healing journey faster, but that’s probably not realistic at all, especially in the Western Medicine sphere.*
#1 – The General Practitioner (my doctor since 2006):
The earliest I can remember having symptoms that then continued on for years was in the fall of 2009. I was starting to have other than normal tiredness and that fall, I got the “flu” and I was sick for several days. I remember sitting out on the deck in the sun hoping I would feel better soon. I’m not sure why I remember that moment but I do. I think I realized in the back of my mind that something just wasn’t quite “right.” I was wishing I could stay out of work just one more day to rest.
The flu like symptoms continued off and on as did the tiredness. When I went to my family doctor, a family practitioner, she of course blew it all of to the daily grind. To working a lot. I didn’t have the flu anymore and nothing else was wrong (supposedly). She told me that my thyroid was borderline but did not send me to an endocrinologist. “We’ll just keep an eye on it,” she said. I got better so I didn’t worry.
But a few months later, I was back to the tired. I went ahead and decided to go to an endo doctor. After blood work, I was diagnosed with Hashimoto’s disease. My thyroid wasn’t working properly. My GP said “great” and we moved on. I felt a little better once my thryoid meds were adjusted. I also thought “great” and moved on. On the summer of 2010 I had a weird rash on my legs. My GP told me to get someone else to do the lawnwork. I think she gave me some cream and it cleared up. No biggie.
But then in the fall of 2010, the tired was back. I felt sluggish. At this point, I was diagnosed with reactivated Mono. I tried to ask questions like “why” and “how” since the blood work showed I had in fact had Mono before (I had NO idea that I had Mono when I was 25 (in 1995) because it was in combination with a horrible strep infection so the Mono was missed and never diagnosed!). My GP said to stay hydrated and rest. I took a few days off of work which didn’t help, and then I got back to it. It took a few months to feel better but I did eventually.
After that, the cycles continued. Between 2010 and March 2013 (when I was finally diagnosed with Lyme disease – CDC+), I had “reactivated Mono” about 6 times. My GP was pretty nonchalant about it. But I wasn’t. My research revealed that usually a person has Mono once in his lifetime and then builds a resistance to it. It supposedly doesn’t reactivate! Everything I read said that reactivation of Mono (Epstein Barr virus) “rarely” and “hardly ever” happens. And with every cycle the symptoms seemed to last longer. Chronic Fatigue was starting to be thrown around but the GP wasn’t willing to diagnose me with it. On the flip side, according to my endo, my thyroid was working nicely now on the medication prescribed. So what could be going on??
By the fall of 2012, I was exhausted. But I was getting married in November, I was chair of a department of about 40 people, I was sponsoring clubs, etc. I just figured it was all par for the course. Oh, and I trusted my two doctors, the GP and the endo. Yet, on the 6th diagnosis of “reactiviated mono” in October of 2012 and just a few weeks before the wedding, I’d had enough. I pushed my GP on the WHY was I continuing to experience Mono??? I wondered also WHY she wasn’t more concerned? At this point, I figured my immune system was not doing a good job, but WHY not?
She finally and not very willingly, referred me to an Infectious Disease doctor. My appointment was not until January 2013. But that’s another post, my friends!
Conclusion: my first doctor, my GP, did not help me get to the root of my issues.
Coming soon – Duck, Duck, Doc…#2 The Endocrinologist. Stay tuned!
**Disclaimer: I share my experiences not to whine nor complain, but to hopefully allow others some insight into the day to day of a Chronic Lyme patient. Keep me in check, my peeps! Please, if I start to take on a “poor, poor me, whiny baby tone,” I beg of you to tell me!! I need help with this because many times, my brain does not function correctly!
My ultimate goal in sharing is not to have pity bestowed. A multitude of other Lyme sufferers and Chronic illness patients are in serious need more than myself. My goal is to pull back the curtain that hides much of the truth about Lyme disease and its co-infections, the curtain that many do not know even exists, (I had so little info when beginning this Lyme gig), and to share and explore this disease while also educating and assisting others as much as I am able. My goal is also to try and process and figure out this crazy journey of life now that chronic Lyme is in the picture. A disease so controversial and misunderstood, it leaves in its wake immense suffering, blatant ignorance and denial, and untimely deaths as it continually grows at unprecedented rates everywhere in our nation as well as across the globe.
In the past two months, I’ve had 6 doctor visits. Please don’t get me wrong; I’m grateful for many things in regards to my health care: I have insurance, both my main doctors take the insurance I have from my work, many labs are covered at 100%, and right now, I can manage to pay for the insurance, for the visits, and for the meds prescribed as well as pay for a majority of uncovered (this word is not right but …Lyme brain) supplements, shots, massages, and such. I’m telling you this because as Lyme patients, finding a knowledgable doctor, an afforable doctor, and a doctor who takes insurance for Lyme treatment is near impossible. Finding one who has these qualities is like winning a trifecta!
Now, none of these visits were your regular yearly appointments for check-ups, physicals, etc. And none of these were other visits were with other needed doctors, such as dentists or optometrists. No, all of these visits were an extension of chronic illness issues.
My usual Lyme doc visits happen every 2-3 months. Oh, hold please. Redo. My visits here with my local Lyme doc happen once every 2-3 months. My visits with my out of town Lyme doc happen once every 4 months. This means that if everything goes as planned (cue laughter now), I will go to 8-10 visits for the year. Honestly, this isn’t too horrible. Except for the fact that because my immune system has basically been hijacked by the Lyme bacteria, and as a teacher I work in a Petri dish, I get sick with other things very easily on top of the Lyme.
You know, the run-of-the mill coldest, flus, bronchitis (bronchitises? LOL). Last year I managed to get a cold and bronchitis in the fall and then in the spring, another cold, maybe a flu (although these symptoms are similar to Lyme symptoms, and then a strange rash that knocked me out of work for a full week.
This summer, the rash that I had late spring came back again at the end of June. It made my left eye swell up and it was also on my left cheek, left jawline and on my chin. And omg, it itched fiercely! This was a few days before the 4th of July. After seeing my doctor here and then a dermatologist, and taking steroids then applying steroid cream to the areas, it finally went away. Both doctors said dermatitis. Thanks for the insight, docs.
Many times, going to the doctor(s) is a bit depressing. Progress moves at a literal snail’s pace, if at that sometimes. And quite often, probably most of the time, we change or tweak the protocol, but we don’t immediately see any results (sometimes, we see no results). But I guess that deterioration of my body also moved very slowly. I really have no idea how long Lyme has been in my system, chipping away at my immune system, neurological system, et.all!
I’ve got another Group Appointment comng up in about 3 weeks and then my doc visit here a few weeks later. I’m keeping my fingers crossed that no other health issues come up between now and then. When I come down with regular illnesses, my body always responds in a weird, awkward and unpredicatable way so everything then is intensified and lasts longer. Like a cold. Most people can move through a cold in 5-7 days. Granted, we all hate having a cold! What misery. But for me a cold can linger on and on and quite possibly become something else, like Bronchitis.
But I do not have a regular GP anymore. I’ve tried a few new doctors out for this position, but inevitably, they know absolutely nothing about Lyme and/or brush it off as no big deal. So it just becomes a waste of time, money, and energy to go anywhere other than to my Lyme doctor. Of course, trying to get in to see the doc on the fly is nearly impossible.
It truly is criminal that more doctors are not trained in the area of Lyme disease, especially since it is the fastest growing infectious disease in our nation. I saw an infectious disease doctor before being diagnosed back in 2013. He was one of the steps to go through to rule out other possibilities other than CFS and FMS. He took no blood. He did NO BLOODWORK. A month later, I tested CDC positive for Lyme disease.
Lyme disease is in many, many cases such as mine, not easily diagnosed, not easily treated and acknowledged. If this trend in medicine continues, more and more of us will be contracting Lyme and not being treated promptly nor properly.
Watch out for thos ticks, my friends, Make sure you are using preventatives and doing tick checks every time you come in from outdoors. I certainly do not want you to become a member of the chronic Lyme club.
So for about the past monthish, I’ve been struggling with both fatigue and a weird rash that popped up on my face and arms. Let’s just say it wasn’t fun. But, I’m back on track, the rash is gone, the fatigue hangs in, and we are moving forward into our last week of school.
Being chronically ill with Lyme disease or chronically ill with any other disease means figuring out what one and do and not do on any given day. And while working full-time, my routine is basically, go to work, come home eat and rest. Weekends are for resting. This spring, I have missed several functions due to feeling terrible. You know, like baby showers, dinners, birthday celebrations, hanging out with friends and family. Looking back on this past spring, I think I have been at a real function maybe 3 times? Now, don’t get me wrong, I am in no way a social butterfly. But still. I definitely try not to feel guilty when I have to cancel, and I try to be good to myself, especially when I feel depressed about having such a restricted lifestyle.
While honesty is the best policy, sometimes it just works better to try and put on the Normal Act. Recently, I was able to attend a celebration. Overall, it was really nice. I also was able to see friends and family that I haven’t seen in quite awhile, so that made it even more awesome. Here’s the thing though, it wore me out. When I get into situations like these (and again, it isn’t very often), I do feel stressed out. Sometimes just talking can be an absolute chore and/or nightmare. And while yes, I am a teacher, and I have to talk a lot in my position, well, it’s hard to explain, but it is different. Worst case, as a teacher, I can wing it because I have experience. Yes, I do have conversations with my students as well, but most of the time his happens, it is usually just one on one without a ton of extra stimulus. It is easier to “act” normal and to be in control of the situation. Not so much at a party.
Sometimes, in a social situation like a party, or something involving many people, I really do my best to “act” normal, to put on the public mask. But it is damn hard. It takes a lot of work. The noise level, the meeting of people, the small talk, the picture taking. Wow. It just overwhelms me. I guess this is due to the neuropyschiatric symptoms of Lyme. One of my strategies to dealing with this kind of thing is I try to switch to auto-pilot. I try not to think too hard. I try to speak in simple sentences. Really, not speaking is the best.While at said party, I forgot someone’s name that I have known for quite a long time, I switched up words, I forgot words. And as my body and brain became more tired, the worse it became.
However, people can be so very kind. They want to talk to me about how I am doing, how is the treatment, am I making progress, etc. I do indeed appreciate it all. But it can cause a bit of anxiety for me as well. I think it is my cognitive wires getting crossed. So some things that came at me the other day: Have you tried ***treatment?, You look great, you must be feeling better!, Mental health is 50% of overall health, and more. Of course, I want to engage in conversation, I want to interact with others. Yet, this alone takes so much energy. It all just wore me out.
On a positive note though, like I said the party was fun, and I was able to rest all day yesterday. I hope you all are enjoying this Memorial Day.
I was really hoping these last few weeks of school would go very smoothly. I’d made it this far, limping metaphorically, but since spring break, I wasn’t doing too horribly. My protocol since March this year has been herbals only, and so the hope is that my body in conjunction with the herbals can combat the Lyme and send it packing. Yes. I completely understand that after taking a multitude of antibiotics for over 30 months including IV abx is hard on the system. Yes. I understand that my gut flora is messed up. Yes. I know it will take awhile to get my system back on track. Yes, yes, yes. Got it.
Knowing now what I know about Lyme disease and the various ways to treat it, would I go back and do the same thing? Most likely. When I was first and finally diagnosed with Lyme disease, I was severely ill. Not only had I had Lyme for who knows how long active in my system, I also had a viral overload. Several viruses that we normally have once and then build an immunity to had reactivated in my system thanks to the bacterial infection. So, yes. I think treating with antibiotics was the best choice starting out. It took almost 9 months to truly see any difference in what I was experiencing. I didn’t herx either for about the first 9 months. I was one sick puppy.
Very rarely do I forget that I am still dealing with Lyme. It won’t let me forget. If it isn’t one thing, like severe fatigue, then it is another, like nausea and migraines. The symptoms seem to come and go with no rhyme or reason although the headaches seem to stay my constant companion. When my LLMD first started treating me in 2013, she said that “we want to progressively get to a point where you have more good days than bad.” Sounded like a great plan to me. And sometimes, that is the case for a few weeks at a time.
Recently though, I have had a string of pretty rough days in a row. As soon as I can, I will post about what is going on. Right now, I am just trying to put my nose to the grindstone and get through it. Consequences of this situation right now are that I cannot work, so I have been out this week. Of course, I am grateful that I have so much support at my work and people who understand, but I feel bad that my students miss out. But if it had to happen, this really is the better time of year since we are getting close to finals and summer break. It’s been an emotional rollercoaster for a couple of weeks, and I am really ready to get better and get back to work.
So for those of you with Lyme disease out there or a chronic illness, do you also experience a fluctuation in symptoms? Are they triggered by anything that you can pinpoint?