chronic lyme disease

I Still Gots the Lyme!

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Hi all!! I know it’s been a skip and a beat. The aftermath of Hurricane Harvey ate up much of my time, then school started. Starting school 2 weeks late has thrown things off and so, I admit, it has taken me awhile to get back into the swing of things. I honestly didn’t realize that it had been so long since I had posted.

I hope this finds you and yours well. While the first day of Fall has come and gone, I can attest that it certainly has not arived whatsoever here in Houston much to everyone’s dismay. In fact, yesterday, the high was 90 degrees. No bueno. Yes, the shadows are changing, birds are gathering, and clouds look “fall-like” and yet, it is no cooler. I believe there is a cool front rolling through this evening (LIES!), but I don’t dare to look at WeatherBug and be disappointed again.

Pumpkins1

But hey! I still have Chronic Lyme disease! However, the months of July, August, and most of September were the best I have felt in the past 4 years!!  It has been like the clouds in my brain cleared away and the sun felt brighter and life was more beautiful. Sincerely.  When I saw my OT (out of town doc) in September, she asked me what I thought was working and making the difference. Here’s what I told her:

  1. the additional thyroid medication she put me on in May,
  2. being off of work (I had all of June, July and half of August off completely),
  3. and maybe the combo therapy of antibiotics ahe put me on in June.
  4. But really, I don’t know for sure.

I started back to work in mid-August, then the Hurricane/flooding, then 2 weeks off, then back to work. This is week 6 of being back to work full-time. So far, it hasn’t been bad. But I can start to feel a change in my body. It feels like I’m slipping somehow, albeit very slowly.

At my OT doctor appointment in early September, my doctor decided that it was time to start weaning off the antibiotics. I was hesitant but I also know that we have to see if I can manage without them. I have been on Rifampin since March and on Ceftin and Zithromax since June. I eliminated Zithromax first, then Ceftin, and this is my last week on Rifampin. I felt alright without Zithromax. But the week I stopped Ceftin (about 3 weeks ago), the daily headaches seemed to return. 

At first, I blew it off thinking it was becuase I had a cold. But I can say for sure now that the headaches are back. I’m also feeling a little less energetic. Again, I doubt myself and make excuses – I’m back at work, I’m not sleeping as much, I’m…..but I know deep down that it is Lyme related. 

I’m giving it this week, and then I will contact my OT doc. She said to let her know if I start having symptoms again as I come off the antibiotics. Of course, I am having all kinds of thoughts, worries, emotions about this but that is for another post. 🙂 

I just keep telling myself not the dismiss ANYTHING nor any SYMPTOMS. I have to trust my gut on everything and that is OK. Lyme became CHRONIC in my system because it was left to go bonkers for years in my body.

That ain’t happening again. Not on my watch.

Pumpkins

 

Peace to you, friends. Until next time xxoo – Belle

 

 

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Hurricane Harvey Aftermath

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Hi friends! First, I hope you and yours are safe. And second, yes, we are safe! We do live in the Houston area. The past 2 weeks have been surreal. So much has happened and yet, where to begin?

My husband and I did go back to work on August 16th. We both teach in the suburban areas of Houston. On Friday, August 25th, after securing our campuses for the impending storm, we headed home. We honestly thought we might not start school on Monday, August 28th. Little could we fathom what would unfold.

I also have family and friends who live in Rockport, Texas. I lived there myself for many years and attended college in Corpus Christi. Most people I know did evacuate on Thursday. On Friday and Saturday, our focus was on Hurricane Harvey which hit Rockport directly on Saturday, August 26th. We waited for news, and while it rained here most of the day, we weren’t all that worried about our area.

But then Sunday happened. The rain started early and hard. I swear it didn’t let up for 12-14 hours. The water just kept rising. And rising. By 10 p.m. Sunday night, I started to freak out. While we live in a mobile home and it is feet higher than a regular house, there were only a few feet for the water to go before it would start coming in. My husband went out in the driving rain to try to find some higher ground for my car and my mom’s car. People were texting us and we were texting friends checking on them. A few said they were about to get on their roof to try and get rescued. It was a night to remember. Finally, the rain stopped about 1 a.m. 

I’ve never seen a storm like this in my entire life. The rain continued off and on throughout that Monday and part of Tuesday. Luckily, it wasn’t driving rain like Sunday. We heard from friends whose homes were completely destroyed in Rockport. And then the devastion of Houston. There are people today, September 6, just now able to get into their homes to try and demo and clean out the mess. There are so many stories to tell that it is overwhelming.

School was postponed for our students until September 11th. My husband and I have been trying to get out to help people demo houses. We’ve donated supplies and gift cards to people here and in Rockport. But it still doesn’t seem like enough. I keep hearing about friends who have completely lost everything in Rockport. Their house is just gone. It’s all just so very heartbreaking.

Yet, amidst all of this devastation and sadness have been many stories of inspiration and goodwill.  The way these communities have come together to help one another have been nothing short of awe-inspiring.

Wound_Rumi

I would post pictures but I want to be respectful of peoples’ privacy. Let’s just say that what you may have seen in the news , while accurate, cannot convey the absolute widespread destruction and damage the people of the Gulf Coast have endured over these past few weeks. And this is only the beginning of the journey back.

Anyway, I wanted to stop by and say hello. Yes, after all of the stress and physical labor, some of my symptoms are flaring, but I’m grateful for the energy I do have and for the ablity, however limited, to help others if possible.

Again, I sincerely hope you and yours are safe and healthy. 

Peace. – b

P.S. If you would like to help someone directly this is a great place to do so: EACH ONE, REACH ONE

 

or here:

https://www.youcaring.com/fundraiser-widget.aspx?frid=920324

 

 

 

“If I Only Had a Brain”…..

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So, The Wizard of Oz and Lyme…….

Say what?  Ok, just work with me here…..

Lyme bacteria can enter every single system in the body. Every. Single. System. 

This summer, I’ve been experiencing some really great days, in a row!!!, and then I’ve also experiencing symptoms that come and go, day to day, and sometimes, hour to hour. I think I’m noticing it more because I am off of work right now. I’m not sure. 

I’ve been wracking my brain to think of a way to explain the comings and goings of the myriad of symptoms. There really isn’t a good analogy. Not one that is really accurate nor one that people can relate to, at least not one I’ve thought of!

But I woke up the other morning so freaking stiff I could barely get out of bed. For reals. And I thought, man, I need some of that oil the Tin Man uses in The Wizard of Oz. If only!

Thus, my very weird and strange comparison began to manifest. Just to start, so I don’t scare (haha Scarecrow!) any of you off, I’ll only talk about The Scarecrow today.

Here goes nothing!

Lyme Disease and The Scarecrow –

The Scarecrow longs for a brain! He’s searching for a way to get a brain as do I much of the time! While my memory has improved to some degree, I am still having word loss such as trying to find the word “dishwasher” in my vocabulary. Seriously. Easy and well-used words are out of reach at any given moment.

I have now resorted to saying “you know, that THING” or “the dohicky.” It isn’t pretty.  I also periodically (and more than I would like to) have issues with just plain old logic. I try to follow a thought in conversation or in a written piece, I’m doing well, and then POOF. All is gone and I either have to start over, asking random and ridiculous questions of the speaker, or I have to continue rereading the same section of text over and over. Honestly, many times when this happens, I just give up otherwise I will work myself into a stupid anxiety seesh.

So, indeed, like the Scarecrow, I need a brain!  Now, in our beloved story, the Scarecorw has a brain all along; he just needs to realize it and access his brain. In time, I hope to do the same!

I’m off to get the thing-a-ma-jig! Have a great weekend! -belle

 

What’s Going On?!?

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WOW! So my out of town doctor (OTD) at my last appointment in May looked over my labs (the ones where my ITDoc said my thyroid was “fine”) and said the numbers weren’t where we should have them. OTD then added more thyroid meds and told me to start tirtrating up from 5 mcg and to continue to add another 5 mcg weekly until I hit 20 mcg. OTD told me to stop at the dosage anytime I began to feel better and more energetic. Since the middle of May, I have added the thyroid meds and maxed at 20 mcg around May 28th. Again, this is medication in addition to the Synthroid I have been taking for years on a daily basis for Hypothyroidism.

With the first 5,10, 15 additional mcg I really didn’t notice much. Maybe a little more pep but nothing too noticable. Then, I hit the 20 mcg. Again, not much felt different the first week of this dose. But after about 2 weeks, BOY HOWDY! This past week has been seriously amazing.

Some things I’ve been able to do this past week that I haven’t done for months on end……and that I definitely haven’t done all in one week for YEARS are: Go out for dinner with friends, go to a movie (at night!), go grocery shopping (I am not kdding), go to lunch with a friend, mow the entire yard (like an acre), clean the house, do laundry, cook dinner, go do errands and actually enjoy said errands! Stay upright most of the day! I also have added small increments of excercise on my old elliptical machine.

No Way!
Source: Netflix GIF

I’ve had the best time! I know that most of the above a normal person can do without much thinking about it, but for me, it has been something else. Have I still had some joint pain? Yes. Have I still hit some energy walls? Yes. Am I not working right now? Yes. But still!!!

Now granted, I probably have absolutely no idea what “normal” is anymore. After 4 years of treatment and about 7 years of being ill what I can remember is most likely skewed. But I honestly haven’t felt this good and full of this much energy in….well, I have no idea how long. While I have had some hours and maybe a few days sporadically over the past year where I felt well enough or I had enough energy enough to do a few things, I have never had an extended period of time – a whole week! – where I felt like this.

I’m savoring every single minute, my people. Every. single.minute. My husband says we’ll take what we can get, and I say Amen to that. I know I’m not “cured.” I also know that my being off from work for the summer helps. I also realize that I’m starting a new treatment protocol of combination antibiotics and high doses of those antibiotics in just a few days. There will be fallout from this treatment. I will have to detox, to deal with new symptoms, to handle herxes. I know. I know. The thought  of lsoing this momentum makes me want to not go ahead with this protocol. But, I need to try it. I’ve never been treated with combination therapy and if I’m going to do it, the summer is the best time for sure.

But until I start the new meds, I’m going to kick it up as much as possible. I’m going to try to squeeze in everything I physically can while I feel good. So I’m off to do some projects. I hope your weekend is wonderful. And a Happy Father’s Day to all you dads out there. Take care of yourselves.

Peace and joy- Belle

 

 

What’s the Sitch?

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What’s new in my world?  It’s been a tough spring, I won’t lie. In March, I had to take a medical leave from work. I was just dragging at everything, missing work days, spending every minute at home laying down. It truly was torturous. I couldn’t manage to gain any ground at all even after resting all weekend long.

It was depressing as hell. It was like watching a movie. You could see what was going wrong but no control in changing it. I was just a zombie. The chronic fatigue was impenetrable. I was out of work about 3 weeks. I tested positive for Lyme and EBV again (not new infections but chronic ones) and my doctor put me on antibiotics. I was a little better when I went back at the end of March. It was still a challenge daily to get through each day but it has progressively improved.

Sick and tired

I’m still on antibiotics. I’ll have another follow-up on June 28th, so we’ll see. School is out for the summer and that helps too. I considered not working next year, but I’m hopeful I can gain ground this summer and honestly, I’m scared to not work. I know, it’s weird. It’s all very emotional and right now; I am planning on returning to work in August.

I’ll post an update about my doctor visit I had in May with my doctor out-of-town. She’s offering up some treatments being done overseas that sound both promising and expensive. I’m trying to do some more research. More to come and soon!

I hope your summer is off to a great start! I’ve missed blogging, and I look forward to reconnecting with you all!

Peace – b

I found this book to be the most helpful when I started my Lyme journey.

 

Lyme and Relationships

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Mary_Oliver_quote1

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.

 

 

Doc Talk v. 3

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Update, my pretties! 

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.

migraine

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.

Peace – b

More Fatigue and No Surprise

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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.

 

Sleeping dog image by zipclick on Photobucket_1263059849863
Source: thesleepingdogs.net

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: The Break-Up Letter

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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?

Letter writing
Breaking up is hard to do.

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.

Sincerely,

Your Ex-Patient