So, I’m one of those bloggers now. I haven’t written a post for several months. I’m not even really sure why I haven’t. Well, things have been topsy turvy, same as everyone else’s things I’m guessing!
The pandemic shut down our school district in March and so, we had to figure out how to finish the school year online. It was a strange time. I spent much of the summer completing online trainings, hoping to mitigate what might happen in the fall. School started late; we trained and tried to learn an online learning management system.I say “tried” because we barely received any training, and we’ve been working just one week ahead of our students all of this fall. It’s been a real sh*t show. Also, we were and have been teaching both face to face and online this whole semester. Once school started, honestly, I haven’t had a minute to spare and if I did, I was wiped out and resting or sleeping.
Considering the amount of stress I’ve been under at work, I’ve survived. I was really worried that I would end up in a exhaustion/fatigue flare. I’m still worried about it now that the semester ends in a few short days. Fingers crossed.
I also started a new medication this past May, disulfiram. Both of my LLMDs suggested that I try it out for the chronic lyme. At first, it wasn’t affecting me at all. BUt the dosages titrate up and when I got to a certain dose, I just could not tolerate it at all. I tried, I really did. I’ll write more about it soon, I promise. Anyway, let’s just say that September and October and most of November were dealing with the side effects of that medicine. I finally gave up and I’m taking a break. I’d like to try again, but it might have to wait until this coming spring, when things at work are hopefully, calmed down.
I hope you and yours are staying healthy and safe during this pandemic. Take care and thanks for reading!
I’m not sure where the time has gone. With school closures in March, my SO and I were working every day trying to keep up with the changing directions for remote learning. I’m really not sure why/how time has slipped by so fast!
Without a true final day for the school year (at least for teachers), I didn’t actually segue to summer until like maybe the beginning of July. And now, we’re waiting patiently to hear if/how our district will deal with the beginning of school which as of today is August 24th. As teachers, we’ll be back earlier but we’re not sure in what capacity.
It’s a lot to think about and with things changing daily at the state level, I’ve just tried to opt out right now. There’s no sense stressing over something that might change tomorrow.
While I honestly was not a fan of remote teaching overall, it did give me an opportunity to keep my health in decent shape. I actually was feeling good with only a few lingering symptoms hanging on. There were still days where I would have flares I guess I would call them, but they were few and far between. I was able to do things most of the day, hitting a wall about 4-5 p.m. with a short period of resting.
However, back in May, one of my LLMDs suggested trying out Disulfiram because of my lingering joint pain, sleep issues, fatigue. And after doing some of my own research, I decided I would try it out.
I’ve been on a super low dose for about 2 months now. I was rolling right along with no issues and I was thinking, well, what’s the big deal? Nothing is happening. I started to doubt that it was working at all. And then, bam! At the end of June, I had about 3 full days of feeling like hell. I spent most of those days in bed. All kinds of symptoms were going on fatigue, headache, joint pain, stomach issues. I wasn’t worried about COVID because these were all too familiar to me.
Since then, I’ve felt somewhat better. Symptoms kind of come and go so overall, I’m not feeling great. I had a phone appointment with one of my doctors last week and the doctor said yes, everything I’m dealing with are side effects of the Disulfiram at work. It’s stirring things up and killing bacteria. With the die off comes the symptoms if the body can’t keep up with detoxing. Sounds crazy, right? But it’s called a herx. I’m starting some new supplements that will hopefully help with this process.
Overall, I’m having a bit of a tough time dealing with this both physically and mentally. Physically, I’m trying to keep things stable and I’m trying to listen to my body when it tells me something like I need to lay down. This has been somewhat of an adjustment after these past few months of feeling better and being able to not worry about not feeling well every minute. So an adjustment for sure. Mentally, it’s been kind of messing with me. I feel like I’m being thrown back into being sick all of the time (I mean I’m chronically ill but I was on an upswing), and it’s both scary and depressing all at once. My main goal is to try to remind myself that This Too Will Change. And damn, it’s hard! But things have changed before and they will again. If I’ve learned anything with this disease, it’s that for sure.
Now, you might laugh because after all of this, I’ve decided to switch from one doctor’s protocol with this medication to another’s whose approach is a bit more assertive. This means that in another week, my dose will increase, and so too perhaps will the herxing. Now, I can always, always lower the dose if things get too crazy. Why not stay on the super low dose? Because that means I will have no change in dose for 3 months straight. And from everything I’ve read, dosing should increase periodically. There are other reasons, but I’ll leave it at that for now. So, ironically, I’m pretty much doing this to myself!
However, people really are seeing results from using this medication. People who have suffered years and years with Lyme disease. It took me awhile to decide whether to do this or not, and if I’m going to do it, I want to try to maximize results. Wish me luck!
I hope all of you are doing well and staying safe out there. Happy weekend! – belle
Oh, yes. The elusive treatment that will bring the “cure.” I’ve been down that path a few times.
Oh, yes. The elusive treatment that will bring the “cure.” I’ve been down that path a few times. When is it okay to be okay with where I am right now? It sounds like “giving up”, but is it? When does pursuing treatment actually become harmful?
Honestly, I don’t know the answers to these questions, but in a week or so, I am coming up on the 7 year anniversary of my Lyme diagnosis. And it’s already been a decade at least that I have been ill in some form or fashion. So, these questions are on my mind.
I can’t change the fact that in the USA, Lyme disease isn’t treated as serious even though according to the CDC, more that 400, 000 + are infected yearly. Even these numbers are low due to reporting issues. I can’t change that almost no monies go into to researching this disease, that testing is only maybe 30-40% accurate and that there are only experimental treatments beyond the IDSA doctrine of 4 weeks of antibiotics. I try not to think about any of this anymore because it is a waste of brain power. See more about what the CDC says here: https://www.cdc.gov/lyme/postlds/index.html
But this leaves me, like thousands of others, in limbo: do we continue to try things that might help lessen our suffering or do we accept where we are right now? These other optional treatments can break the bank and are certainly not covered by insurance, and in many cases, they work for a bit, but then we are back where we started. Now what?
Am I in a better place than I was 7 years ago? Heck yeah. And for that I am grateful. But I’m still dealing with fatigue, memory issues, word loss, joint pain, and insomnia. One doctor tells me that most likely, this will be as good as it gets. Another tells me to try alternative therapies that cost an arm and a leg and/or have not been researched enough. Which way do I turn?
I absolutely love my Integrative doctor, do not get me wrong. This doctor helped me out of a very dark place about 3 years ago, and I have made progress with this doctor. S/He definitely has a good heart and wants to help me. But the last treatment we tried – a nasal spray to be basic – costs a lot. Now, S/He encouraged me saying, ‘it really can be a game changer.’ I couldn’t pass something like that up! I did the pre-testing $200 (to make sure my body was ready for the treatment covered by insurance) – and I ordered the spray – one month supply $250 (not covered by insurance). And while for some this isn’t much money, for my family it is. When I ordered the first month supply, I wasn’t sure if I would be able to continue if needed another month at $250. I figured we could manage it somehow, especially if it were working!
I began the nasal spray – 4 times a day – around Thanksgiving. I stayed on schedule, making sure I didn’t miss a dose. I mean “game changer”, my people! But you probably already know the outcome – meh. Nothing seemed to change at all. When I asked the doctor through our patient portal is I should continue, the answer was yes, but only if I were seeing results. So.
To say I was disappointed that there were zero results is an understatement. But was dumb of me to put any stock into the possibility that this could be The Thing to help me progress in my ‘journey towards wellness.’ Then I had doubts about my own possible culpability. Was it something I did to somehow mess up the treatment? Did I miss a few doses somehow during the holidays? What did I do wrong?
All of this is just plain old exhausting, isn’t it? While I surely do not expect ‘a cure’ I would like to make a little progress from where I am now – about the same place I’ve been for a couple of years now. But maybe this is it. This is the best it will get. And if so, can I be OK with this?
When summer started, I needed a couple of weeks to decompress. I was wiped out completely by the very last day of work – teacher workday. My brain was not working well at all, and I was having some medium to severe lower back pain and right hip pain. As I walked out of our campus doors on May 31st, I wasn’t sure what the summer would hold for me healthwise.
I had 2 goals for this summer: get off of the sleep meds I’ve been taking for several years and to try and add some exercise to my daily routine. I stopped taking the sleep medication immediately. I’m not going to lie, it was really tough the first week or so. I would go to sleep and then I would keep waking up almost every half hour to hour most of the night. I almost caved in before things started looking up.
My sleep had not been improving on the sleep medication this spring at all. In fact, insomnia is now one of the lingering symptoms I am dealing with as far as the chronic Lyme is concerned. I spoke to my in-town doctor about this at my June visit, but remember, she takes insurance and if I am lucky, I get about 8-10 minutes with her. It is impossible to discuss much in that short of a time frame. And at this appointment, I wanted to focus on the deep hip pain I’ve been having since February so that was the topic of our brief visit. Let’s just say she didn’t help me with that either and leave it at that.
I really wanted to use the summer to try and get a regular, good sleep pattern back if at all possible. So I endured. I haven’t taken a Lunesta since June 1st. I do take time released melatonin and Valerian Root before bed and a supplement of DIM my out-of-town doctor suggested. I’m not saying I haven’t had some tough nights. I have. But overall, I’ve been pretty happy with the results of stopping the medication. While I still wake up a few times every night, I’m able to get back to sleep most of the time.
I’m sincerely not sure what I will do if, once back at work, I can’t sleep well. Not sleeping well for weeks and/or months at a time is just so horrible for me on so many levels (for anyone really!), that I will probably have to go back to Lunesta or ask my doctor for a different sleep med if that happens. I won’t make it if I can’t sleep. I am sincerely keeping my fingers crossed that I can maintain my sleep naturally!
My other goal this summer was to add a bit of exercise if possible. Before Lyme, I liked to walk 2 miles a day and do yoga. I always had a strong energy level so I could do these before school or after school. But these past 6 years, I just have not had the energy to do anything. Even just working has been a serious challenge for me. When summer started, I added 30 minutes 5xs a week on the elliptical machine I’ve had sitting around for years LOL. Oh dear God, the first 2 weeks were not fun, my friends. Wow. I knew I was out of shape but DAMN! But I have been able to continue this workout 5xs a week all summer! I am so happy about this! I want to be optimistic and say that yes, I will continue once I head back to work August 12th, but I just don’t know. I need to be realistic. Look, I am going to try. That’s all I can do.
To be honest, I haven’t done a lot this summer. We went to the river 3-4 times this summer which is always great but otherwise, I just did some cleaning at home and enjoyed the time off. Oh, plus a few doctor visits! My hip has been killing me so I am trying to figure that out. That’s for another post though.
I hope you and yours are having a good summer! Take care – B
When the anniversary of my diagnoses of Lyme disease comes along each year, I get a little freaked out.
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.
Hi my people, well to say it’s been awhile would be an understatement. It’s been months, lots of them. I’m not really sure how I got off track, but I sure did. I hope this finds you all well. I hope you managed through the holidays and Happy New Year!
I wish I could say I’ve been kickin’ it up and having a grand ole time. And maybe some of the time during my lapse, I could say this. Of course, some of the time has been surviving, making it to work, and trying to not miss too many days at work so, you know, I get paid. So far, so good.
Treatment-wise, let’s see. Really not much has changed. I’m completely off of antibiotics, and I have been now for a good solid 2 years. I still take supplements and those change off and on. My thyroid seems to be working well and overall, the fatigue is less.
Sometimes, I can almost forget about the Lyme disease. But not completely. Last summer, I battled a weird rash and had about 6-8 doctor appoints in a 2 month span with my LLMD, dermatologist, allergist…all to the conclusion that we really don’t know what is causing it. I haven’t had an issue with it since last summer, so I am hoping there won’t be any recurrence. Fingers crossed-always.
Many symptoms have cleared up – the migraines, the lower back pain, the neck pain; I could go on…. But I am still dealing with fatigue and memory issues. I’m unsure if these things will ever be optimal again. My integrative doc has me on iodine drops, and we’re working on hormone balancing now too. She would like me to try the 3 Pass at my appointment in June, but i’m kind of a scaredy cat about it! I have no idea why!
It’s coming up on the anniversary of 6 years treating this disease. It is also then been about a decade since I first started having very noticeable symptoms. It’s strange then to wonder what I would actually be feeling like a decade older with the Lyme disease. Hard to say.
I’ll definitely try to be more on it and post more! I just feel boring. And I’m not sure what people might want to hear from a person with Chronic Lyme disease. Hey, I’m still sick! LOL!
If there’s anything you want to hear about or questions I can answer, please, please let me know. Until next time, take care.
Peace – Belle
P.S. We love dogs and have several strays, so lots of puppy pics! 🙂
We decided to do an overnight trip to a major river about 3 hours from home this past week. My husband loves a particular spot, and the river is spring fed so it is nice and cold. Temperatures here are now are hitting 95-100 degrees with a heat index of 105+. It’s really hard to find fun things to do that do not require you to be outside between say 9 a.m. until 9 p.m.! Fer reals. I just can’t do the heat at all.
We also decided to take one of our several dogs, Newton, as he has made a trip to Colorado (17 hours in a car) and did very well. He is also very well tempered and loves to socialize. We weren’t sure how he would do in the hotel, but we figured worst case, we could make the trip home that night if needed.
Needless to say – he had a blast! He met all kinds of new people and other dogs. He swam a bunch. He had many adventures! Staying in the hotel went well. He barked just a few times but nothing major. He passed out and slept all through the night. We will definitely be doing this again!
As for me, I did pretty well, too! I’m pretty rested up from not working, and the river has great places that are shaded so I didn’t overheat. My fatigue has lessened over the past month or so and I was able to keep up. Overall, we had a wonderful time. It was great to be outside and to enjoy being active!
I can’t proclaim that I am actually branching out but I am venturing into some possible video options to add to this blog. I’ve never done this at all so thanks for trying it out with me! It’s something I’ve wanted to experiment with for awhile now, but honestly, I was too scared to do it. For lots of reasons. But watching my husband use Snapchat and Instagram all the time, I figured, “why not?”
I hope my first video isn’t too horrible. I know I need serious practice with this medium. I hope your Sunday is going well, and thanks for checking out my first video and my YouTube Channel! Take care, friends!
This same rash began again on my face and proceeded to foremarms, stomach, legs…
Hi fellow travelers! Just a thought, if you are interested in even more mundane things I focus on, then please follow me on Twitter @readbtwnthelyme
First, let me pre-empt the onslaught of my complaining to say I’m Hella Glad it is Summer! I’m not sure I would be able to semi handle this stupid, horrible rash as such if I were actually working.
So, you may remember this Monster Rash attacking me..YES! Attacking me! in November 2017 with The Damn Rash is Back and again in March 2018 with Rashes, Rashes, We all fall down….. and here we are again. JOY! Now, I did have this similar rash back in April 2016 and June 2016 as well but let’s just keep it as simple as with my muddled brain this is as best I can do right now! Lord!
In June 2016 I was seen by a dermatologist who declared NO SKIN LUPUS and Excema and sent me on my merry way. No FU. Luckily, I thought the worst was over and did not have another incident until November 2017. This incident in November also started on one side of my face, then tops of hands. It stayed fairly contained, and I was able to treat it with topical creams and OTC allergy meds. I thought I was in the clear.
Again, though, things got really messed up in March 2018. For a scintallating read see Rashes, Rashes, We all fall down….. This same rash began again on my face and proceeded to foremarms, stomach, legs…..my LLMD (let’s loosely use that term at this point!) started me on allergy shots and things blew up again. I was in rash mode almost all of March. It was horrible to say the least. The solution at this time according to my LLMD? was that I have allergies, and I needed to try allergy immunotherapy. I trusted my doctor. After the crazy reaction to the FIRST allergy shot, the vials were diluted, I was given another pack of steroids and sent on my way to find a dermatologist. Needless to say, I stopped the shots and I could not find a dermatologist I could get in to see at this point (all were 3-4 week wait) before the rash cleared up.
Look, I knew I was looking for trouble now in retrospect. Not on purpose though. Again, I trusted my LLMD and thought, Well since I’m out of school for summer, Maybe I can try to do the allergy shots again? See how it goes? Let’s just say that I’m a DUMBASS. And also that I have learned my lesson not to ever trust my doctor who is pushing a side scheme to have my best interest at heart. Granted, I’ve had this rash before, before doing any allergy shots, but it is my belief that the shots set it off again on a course that has been a dreadful one.
I began doing these shots at home a few weeks ago. Yes, they sent the vials home with me. Yes, I was administering these myself every 3 days. Now, after seeing an allergist (who was shocked and dismayed that this was happening!) I realize that this was a really bad plan. But honestly, I had no idea. I administered my 3rd shot on Tuesday, June 19th. By Saturday evening, I had one red streak under my left eye. I hoped I was wrong, but withing 24 hours, my entire face was swollen, itchy, my eyes were so swollen, the tops of my hands were itching and the rash was moving up my forearms. The Monster Rash was back!
I arrived Monday morning at my doctor’s office as soon as they opened. After telling my tale of the sequence of events, LLMD? stated that in fact, it could not be a reaction to the allergy shots because there was no way I could/would have a reaction 3-4 days after the injection (again, the allergist didn’t seem convinced). I have no idea. I am not a doctor. I recieved a steroid shot along with a 5 day pack of steroids. I was referred to a dermatoligist – again.
While the steroid shot helped my face a bit, I was beyond miserable. The itching continued to spread. I now had spots on my neck, my shoulders, and my ankles. I saw the dermatoligist I was referred to the very next day. She had no idea why I was there. I just assumed since my LLMD? had sent me to her that communication had taken place, but no. I explained about Lyme, FMS, CFS, about the history of this rash, blah, blah, blah. She looked me over. She said maybe atopical excema? But it isn’t all of the time? Maybe contact dermatitis? But again, no new products? Maybe allergies, but still a strange deal? She told me that I am a complex case. Thanks?!
Dermatologist Diagnosis: I DON’T KNOW. COME BACK IN 2 weeks or 2 months…..!!!??? I was prescribed a much higher dose of steroids for 14 days and prescribed steroid cream for both my face and body.
In the meantime, I had been in contact with my integrative doctor who is located about 4 hours out of town. It was suggested I add a few natural histmine blockers and see an allergist for possible food allergy testing. The days passed, and I was in utter misery. Trying not to itch, trying to have a minute of comfort, trying to figure out what the hell is going on with me? The mega steroids were maybe helping – no new spots – but they also were tearing up my stomach. I kept at it. I finally saw an allergist last Friday.
While the allergist is nice enough, and I am glad to add another decent doctor to my “team”, I honestly don’t know that I am any nearer to figuring out what is causing this rash each time it decides to rear its very ugly head. The allergist also had to have my history, with Lyme becoming a focal point and one for interrogation. That’s never a fun time.
Allergist Diagnosis: Contact dermatitis. Get rid of all products with perfumes. Perfumes and fragrances are what cause 99% of contact dermatitis cases. But doc, I ask, if contact dermatitis then why/how is it all over my face and then also on my legs and arms and…..? Well, doc says, if you are really extra sensitive, it could possibly be spreading without contact at this point. Oh, like a reaction to the orginal spot? Yes? Maybe? I had so many questions but the allergist was done. I was diagnosed and sent off to change out all of my products, to take even more doses of steroids and not much else. Follow-up is in a month assuming no new rash occurs. If it comes back sooner, I go in and we begin allergy testing…….Not sure why we are waiting but……
Running from the RASH!
I would like to say here that I am not trying to discredit any doctors nor say that I know more that they. Obviously, I don’t AT ALL!!! I believe deep down that each doctor is trying to do his or her best. But as a patient with complex and chronic diseases, sometimes I feel like I am just pushed along. I’m sure all of you have felt this before. It sucks.
**And hey, if you are still reading – THANK YOU! I promise, my tirade is almost concluded. 🙂
So here I am, day 11 of The Monster Rash (Season 2, episode 6). The steroids are kicking my ass….more like my stomach and my mood. My face is back to normal (win!) and many of the spots are almost gone. I still have a few places where it itches, mostly in the evenings and early mornings. I’m in the process of changing out all products I use that have fragrances and/or perfumes. The big ones are easy like soap, shampoo, laundry soap. But now I keep running into things like hairspray, dishsoap, shaving cream! It’s all a matter of deducing which possible products might have an ingredient I might be allergic to….OMG. It’s all very overwhelming. And all this ASSUMES it is actually contact dermatitis and not something else.
I see my integrative medicine doctor at the end of July. I wish this doctor was closer. Since being in treatment for Lyme, etc. my IM doctor has helped me the most. She’s never actually seen me with the rash during a visit, but she is leaning towards a possible food allergy and/or Mast Cell Activation Syndrome.
I’m going to do what I can on my end. This includes no allergy shots anymore from my LLMD. It also includes my not putting too much faith into this particular doctor anymore. It is what it is. I doubt I will go back to the dermatoligist again. What would be the point? IDK. I’ll stick to the allergist and see what my IM doctor might have to say about all of this when the times comes.
And of course, I’ll be keeping my fingers crossed The Monster Rash does not return once I finish up the steroids by the end of this week. Please, just no. It’s been exciting and frustrating enough for the time being.
Thanks for listening! I hope that you and yours have a safe and wonderful Independence Day! – b
Hi my people. I know, it’s been a minute. I’d like to say “Oh, hey! I’ve been feeling SO much better that I am off having mad adventures!” but that isn’t the reason for my absence. Unfortunately. However, it isn’t because I’ve been so bad either. The honest truth is that, well, I’ve been doing my best to finish up the school year and cross the finish line for 2017-2018. And here I am!
Lately, the muddled brain is back. I guess it is brain fog, but it feels different than when I first was sick. Back then, my brain didn’t and wouldn’t work at all. It was a struggle to read even and that was despairing. I couldn’t form thoughts, my short term memory was null, and trying to say basic words? No way. It was frustrating and scary all at the same time.
Slowly, and I mean soooooo slowly, my mental skills have been improving. Reading has become easier, although I still struggle with longer texts, and I have started to join conversations again without fear of completely forgetting my train of thought.
But, recently, maybe in the past 6-8 weeks, things have started to sneak in and/or get worse when it comes to brain function. It’s worrisome. Yet, I wouldn’t describe it as “fog.” At this point, it’s more a jumbling of thoughts in my brain that I can’t sort out. I concentrate and try to spread the thoughts out or I try to separate them into like categories, but I just cannot.
It’s more lik I have 50 thoughts going on in my head and when I try to follow one thought logically and progressively, I just cannot. So the thoughts spin and spin and then maybe, if I am lucky, they just hit a wall and stop for a bit. However, none of this is helpful when trying to actually do something that takes any concentration, say like, Problem-Solving. OMG. And it is frustrating becuase behind all of the basic shallow ideas and thoughts I am able to have and to follow to get me through the day to day, I know there are more in-depth things going on in this brain of mine that are just inaccessible.
But otherwise today, I just want to say HI and get back to it with you. I hope your all is going well. I hope you have had some, I mean many, joyful moments. – belle
