So, I have totally steered away from discussing and writing about the reality of trying to have a marriage, well any relationship really, while dealing with chronic Lyme disease. Why? Because it is TOUGH. In most cases, I feel like a failure and I feel guilty. I know, I know. It isn’t my fault I’m sick and I don’t choose to be sick. But still. All these feelings get tossed around. Many times, I feel like my husband and I just can’t speak the same language.
He’s been awesome, don’t get me wrong. But after 4 years of this illness and not a lot of progress, I think we are both just stuck in how to move forward. How to be more accepting of the chronicness of my illness, and then how to accomodate what comes along with it. We aren’t doing too great of a job, honestly.
I guess like Trump said about being president, “I thought it would be easier.” I thought figuring things out as a couple would be easier than it feels like right now. We are talking and discussing all kinds of things so I think that’s a good sign. But I’m still scared sh**less and freaked out about it all.
I don’t want to lose my husband and my best friend. I want it and US to work but I don’t have a clue what that might or should look like.
Any advice or wisdom you can share? It would be much appreciated!
Anyway friends, I hope your Sunday was and is a joyous one. Peace.
Today, I had my 6 week follow-up with my doctor. Six weeks ago, after the 3rd CDC positive Lyme test in the 4 years I’ve been treating (not a new infection), my doctor put me back on antibiotics. I had been off of ABX for about 18 months.
My doctor wanted to try Rifampin. It is an older Tuberculosis medication but supposedly, some patients who have been sick with Lyme for a long time and who continue to have bands show on bloodwork are finding this medication is helpful, particularly in treating persister bacteria. I figured “Why Not?” Let’s give it a go.
So here I am six weeks later. The fatigue is definitely better but it’s still there. I have some short bursts of energy (or energy for me at least!) periodically. At least the fatigue is not as ridiculous as when I had to take medical leave from work in March. Oh, Snap! I don’t think I mentioned that before – time for a post about THAT and soon. But otherwise, I don’t feel much different than I did 6 weeks ago.
Luckily, I’ve had no issues with this particular medication. I’m just trying to take probiotics religiously!! Since my doctor takes insurance, I literally see her for about 8-10 minutes per visit and today was no exception. In fact, today, I think we had a whole 5 minutes together. Insane.
Yes, there are other doctors I could possibly see. However, in Texas, the options for docotrs who know and BELIEVE in Lyme disease are very, very few and far between. Yes, I’ve had some more wise and more dedicated Lyme patients tell me to “Go out of state” and/or “do experimental treatments.” (Uhm, yes, there is a saracstic tone in the last sentence). While I sincerley wish I could do and try EVERYTHING to try and get better, the reality is that I don’t have the money for all of that. Not even close. I’m just doing the best I can with what I got.
Conclusion of said visit? Keep taking the Rifampin. Check on Lyme and the fatigue through blood work (results in 5-7 days). Revisit in 2 months. Like I said, short, short visit.
I will see my other out-of-town doctor mid-May. She is no longer taking insurance so I’ve been saving up my shekels so I can at least have an hour with her. This will run $299+. This will not include any extras. I would love to do a Vitamin C IV ($175) and a Glutithione IV ($175+) but that isn’t going to happen. Honestly though, I am looking forward to spending a whole hour with my doctor. An hour! That’s more that I spend with my doctor here in town in a year. No lies, people.
Lyme disease, once chronic as it is for me now, it a very difficult and complex beast to tame and treat. I know that seeing a doctor for 5-10 minutes every 3 months isn’t working anymore and probably hasn’t for awhile. I’m really counting on this May visit with my other doctor to be awesome. I’ll keep you in the loop!
Hoping all is well in your world. I’m going to do my best to post more frequently. Let’s just say that March was a real *biatch and leave it at that.
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
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.