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More Fatigue and No Surprise
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
16 Comments on “More Fatigue and No Surprise”
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I’m curious, if you don’t mind me asking, if you contracted the ebv at the same time as the Lyme? When I first got sick, they thought it was mono. I found out last year that I had what appeared to be chronic ebv, and was just diagnosed with late stage Lyme last month. Seeing your post, I’m wondering if the ebv is a significant factor in my symptoms? This is all still very new to me and I’ve been feeling a bit lost and helpless lately. My LLMD is the most amazing and caring and compassionate doctor I’ve ever met, but I don’t get much face time with him as his holistic patients are forced to take a back seat to the others in the clinic due to the clinics policies. I’m currently lucky to get 2-3 appts in a year. I want to be able to trust his knowledge and experience, but I’m also afraid to I guess give him all the power as I’ve been burned by so many doctors in the past. 🙃
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Sorry but this might be long! I began having issues with recurring EBV in fall of 2009. Because of my cyclical flares of fatigue and virus like symptoms, my GP kept testing me. She always told me I had mono again and to just rest. This went on for about 3 years and then my thyroid went. I was diagnosed with Hashimotos. About the 5th time of having “mono” again I began diligently seeking answers. I had also started having severe hip pain and numbness in my feet in 2011. Of course not one doctor put it all together. Instead I saw about 7-8 different doctors over the course of a few more years. All the while I was having more and more symptoms. I was finally correctly diagnosed with chronic Lyme in March 2013. In the past 4 years I’ve learned a lot. The Lyme can cause viruses that normally remain dormant to become active so for me this is EBV and HHV6. Lyme usually always attacks the thyroid! I had no idea. EBV is a serious issue for me and has been for years. At this point I pretty much know when it’s active. My symptoms are severe fatigue off and on sore throat and more headaches. EBV usually comes up 3- 4 times a year. I’m working on trying g to get my immune system working so that it can contain the EBV.
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Right now, I take lyseine and lots of other supplements. I also take herbal drops to boost my immune system. I’ve heard that IV Vit C can be great but between doctor visits, supplements, missing work, I just haven’t had the $$ to do one. Here it runs about $175 a treatment. I see 2 LLMDs. One takes insurance and is close and one does not and is about 3 hours from here. I play the 2 ends to the middle. Not sure that’s working g out too well but….
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It would just be nice if they would admit already that chronic Lyme is a thing so we could all get the treatment we need. 😔
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Right? I still don’t get why it’s still such a train wreck. I figure they haven’t been able to monetize it yet plus bodies aren’t piling up – yet. If you want to get in touch about anything just let me know. Unfortunately, I’ve been doing this awhile. Nighty 💚
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It’s all about the money with them. Nevermind the countless number of people suffering. 😒 I hope this round of treatment does you some good. 💚💚
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I am constantly amazed that you can continue to work with that debilitating disease! You are a marvel!!
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Hi Hugh, well it’s been really tough. I may end up taking a sabbatical. I wonder if a year off might be helpful to get my immune system started back up. You know how much we as teachers are exposed to on a daily basis. Ugh it’s just a terribly hard decision but one that may not end up being a decision here soon. Thanks for your very kind words!
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Not a bad idea at all. Recharge your batteries!
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You have amazing and inspiring strength! I struggled through a year of work, feeling the same as you… only able to work and rest, nothing else. Decided to take the summer off and ended up with a dx of Rheumatoid Arthritis and have not been able to return to work. Still struggle with the grief around losing so much of my ability and accepting limitations. Best wishes and I hope you can find a balance ❤
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Oh, I am sorry! I can only imagine your loss. I’m just at a point that the limitations are becoming very depressing and it’s almost impossible to enjoy anything at all. I’m also seriously considering a sabbatical but I’m so scared. Does not working improve your quality of life a bit though? I hope it does.
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It definitely does. There are the obvious downsides of missing a feeling of purpose and finding a new one. And I have a few friends that were work friends that have drifted away. But, if I was working, I would be completely miserable… I get tired so quickly and in so much pain that all I would do is suffer through work and spend the rest of my time recovering on the couch or in bed. Now I can use my time when I am feeling well to do things that give me a sense of purpose (I started volunteering at a dog rescue where I can just sit down and pet pups) and give me joy and peace (spending time with good people, my husband and kids, walking my dogs, reading, blogging, etc.). And I can also just stay on the couch all day if that’s what I need. No pressure to HAVE to do something. I understand the depression, I spent the whole year before struggling through work and it was really hard emotionally and physically. I really feel like I made the right decision. I hope you are able to find the right fit for your health and happiness ❤
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Belle – I do hope you find a balance with your treatments (be it holistic or otherwise) and working with your students. Summer is right around the corner – you’ll have a well deserved break coming to you.
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You are very kind. I’m beginning to realize and accept that I may need to cut down on work for a bit since this is a chronic case right now. It’s just a difficult decision. Best to you, friend!
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Hang in there! I have all your infections plus one more. Working on my diet helped me immensely. No gluten, no sugar, no dairy…pretty much plant based. Over time it helped reset my immune system. Yoga also helped, with my breathing and stress levels. It slowly eased joint pain and fatigue, too. Sending you wishes of wellness and health.
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Hi Cristi!Thanks for your suggestions! I agree, diet can help. I’ve done great at eliminating sugar. But I’m still working on the GF. I used to do yoga before I became so I’ll and it’s something I want to get back to once I’m out of work for the summer. It’s so hard to keep up with a healthy maintenance routine while working full-time. I can’t seem to manage it well. I hope you are on the road to recovery!! 😊
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