Let’s do the Monster Rash

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……

Monster

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

Advertisements

The Damn Rash is Back

First, before I start on my rant, I hope you all had a wonderful Thanksgiving! We had a really good day. The weather was AMAZING. No humidity (say what?!?) and the high was maybe 60? Delish. It was just my mom and me and our 10-12 dogs between us. We cooked, talked, cooked, and talked. It was great to reconnect. My husband and step-daughter arrived home from out of state about 4 p.m. and then we got to visit with them and hear about their trip. I hope you and yours had as much joy as we did!

Now, the RASH. Since contracting Lyme (when this happened I have no idea but….), I have had strange rashes. On my legs. On my arms. On my hands. On my face. I had a bout with hives this past summer. I never really figured out why. It’s been since July 2016 that I’ve had a legit rash. And it was very unpleasant. It was under my left eye across my cheek. It was down the left side of my face and under my chin,

It itched so horribly!! My doctor sent me to a dermatologist (since I had just had this rash in April 2016, same place). The dermatologist tested me for skin Lupus and sent me on my way. The test was negative. She gave me some cream which helped the itching but whatever. It lasted about 10 days. 

My out of town LLMD looked at pictures a few months later and stated it was systemic and not caused by anything external, aka Lyme disease. Or maybe a virus that caught me because my immune system is just plain no bueno.

Anyhoo. It’s back. Same rash but it’s under my right eye and on my right eyelid. It itches something fierce, and I am trying my hardest not to itch it! It is miserable! It popped up Friday night and has just spread a bit. It looks like my eye is swollen. Nice. I’ve been babying it and keeping it contained by not touching it (ok, barely!). And, I’m back at work tomorrow! Yippee!! 

 Look, the last few times it has been much worse, but still. My plan is to go to work as it isn’t contagious (we figured this out the past 2 times as well) and hope that it clears up asap. If my eye gets worse or the area gets more swollen, I may have to take a day off, but I am really trying not to do that if at all possible. 

I’ll be honest, the rashes on my face just make me so anxious. Not because of what it looks like but it’s just a constant reminder that Lyme is still lurking. Lyme is still beneath the surface just waiting for any chink in the defense. It’s a reminder that even though I’ve made progress, I still have miles to go. UGH.

Surface

 

Damn rash. 

Wish me luck with this. Have a good week, friends. Be happy. – b

Trust Thyself?

Howdy out there! Well, yes, the Astros won the World Series, folks, and we here in Houston, Texas are celebrating! Good stuff! 

So, just a quick recap: I’m now officially off all antibiotics for a 2nd time now in my 5 years of treatment for Chronic Lyme disease. Sure, lately I’ve been a bit paranoid, wanting to chalk every.single.everything. up to Lyme. I certainly try to keep track of any weirdness or symptoms cropping up. You know, JUST IN CASE.

Lately, I’ve been feeling pretty fatigued in the afternoons. It hasn’t affected my ability to work, but I certainly do not get much of anything done after work. I’m not really noticing too many other symptoms so that is encouraging. There was one day this past week that I had a lot of stiffness and joint pan throughout the day, and it’s been a few months since that has happened. Again, good news.

But, yeah, the fatigue can be scary. Ever since I was so very sick this past March, the fatigue kinda freaks me out a little, I won’t lie. It’s one of those lingering symptoms of Lyme and especially Chronic Lyme. It’s like a shadow that follows me everywhere. I can’t seem to shake it. Even when I was off during the summer, it was always there, lurking. I feel like I have to always be on guard about the fatigue. It swallowed me up whole this past Spring, and I wasn’t sure I would be able to come out of it. Luckily, I did but it certainly wasn’t a given. Fatigue is stealthy and ninja-like too. It comes on slowly but quickly too and before you realize it, the fatigue takes over everything.

When I’ve been in the dark depths of this illness, in the pit of the chronic fatigue, the pain, the headaches, nausea, there have been times where I have actually doubted my own sickness. What I mean is, there have been times when I have questioned whether if I am really sick. I’ve  thought: maybe I am just  lazy? Maybe I just don’t want to work or maybe I just don’t like my job anymore?  Maybe I was sick, but I’m not anymore? Maybes, maybes. Why would I even question myself like this?

I think some it has to do with being ill for so long. I’m not sure. It took several years if feeling sick to get a correct diagnosis and then, in my case, even when I began treatment, I did not see any real progress in feeling any better for many years. I am sure there are many out there with chronic illness that sometimes doubt themselves. PLEASE DO NOT DOUBT YOURSELF, EVER.

Of course I am sick! In fact, I can almost remember the very day I realized something wasn’t right in my body and that was in November 2009. Then it took almost 4 more years and at least 8 doctors to get correctly diagnosed with Lyme disease.

I know it’s utterly illogical to think otherwise. Whenever I have a little more energy and if I feel a little better, I am doing things I haven’t been able to do in a long time. It’s so stupid to blame myself formy  physical ailments. And yet. Those thoughts have crept in from time to time. Perhaps it’s some sort of weird coping mechanism? I’m not sure. 

But now that I have a reprieve from a lot of the symptoms, I know that these doubts were silly. I have to keep reminding myself to trust my gut and to trust my instincts. They haven’t failed me yet. In fact, they are what saved my life. 

Here’s a tidbit from Ralph Waldo Emerson’s essay “Self-Reliance” (we have been studying this in class and seems relevant. Maybe not, but I like it LOL):

“Every man discerns between the voluntary acts of  his mind, and his involuntary perceptions. And to his involuntary perceptions, he knows a perfect respect is due. He may err in the expression of them, but he knows that these things are so, like day and night, not to be disputed. All my wilful actions and acquisitions are but roving;— the most trivial reverie, the faintest native emotion are domestic and divine.”

And also Emerson says “Trust thyself: every heart vibrates to that iron string.”

That’s exactly what I intend. 

Have a happy week, friends. – b

 

TrustThyself.jpg

Gettin My Slothy On

There really is a term “gettin slothy!” Who knew I would be so cutting edge with the urban slang! Go me!

Anyhoo, the past few days, I’ve been in this mode. I feel a bit guilty, but I truly feel like doing nothing. I’ve watched a lot of Netflix but that is all I can be bothered to do. No worries though; I have been feeding and watering the animal menagerie. They all seem quite content that we have been laying around in the AC watching copious amounts of television.

I can’t seem to get motivated! UGH. I would blame it on the Lyme but I haven’t been feeling terrible. Yes, I do have to rest off and on especially with the new meds I’m taking but not for 5 hours straight! And overall, I’m feeling better this week then I was last week, so what gives? In my defense, my husband has been really busy all weekend with some side projects and so I’ve been mostly alone. I don’t mind it, I just obvioulsy can’t take any initiative by myself!

tired

Not now, please!

I tried to be better today. Although I told myself I would complete an online class for work and well, that didn’t happen. But I did do some laundry and a few other household chores today so can we call it a “productive” or rather “not wasted” day, officially?

I mean I guess a positive of this situation is I am realizing I’m gettin slothy. Last July 4th, I wasn’t feeling very well at all. In fact, my husband went to a little get together, and I just couldn’t due to symptoms and fatigue. So that is good news. I’m not sure if we are up to anything tomorrow honestly. Maybe a movie. Maybe a meal out. Not sure. But either way, this summer, I will be able to do some stuff if we decide to which is a really nice change, no doubt.

On that note, I hope that you and yours enjoy Independence Day tomorrow (for those fellow Amercians) and I hope absolutely everyone has a great week! Take care, friends.

Peace! – Belle

 

Summer 2017

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.

deckchairs-355596__340

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

P.S. I really feel like Bilbo below!!

200w_d

Duck, Duck, Doc…#1 The General Practitioner

*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.

Hanging

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!

I hope your weekend was a calm and joyful one. -B

What’s Going On?!?

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

 

 

Doc Talk v. 3

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

The Lyme and Stomach Tango

This past week hasn’t been much fun. On the positive side of it, I am having way less fatigue and exhaustion and the nausea has simmered a bit. This makes me happy. I try to center on the upside of this. But what I have learned about Lyme and its multifaceted myriad of delights is that when one thing comes under control or subsides, well, just wait; there is another wondrous ailment that will pop up. So it goes.

Today, I am missing work again. The allotted and bank of sick days is quickly coming to a zero quantity and even with the leave days added in the fall for the next school year (I am in no way complaining as it is a generous addition), I will be hard pressed to not use them all and more if things continue as they are at present. This worry must go on the back burner for now though. 

Though the nausea has subsided to a minimal issue, and I have some meds to help curtail it, instead, I am now having some serious indigestion. It happens a good 3-5 hours after eating, no matter what I eat. For the past 8 nights, the indigestion has been so terrible that it has made me wake out of a dead sleep, usually about 1-3 a.m. Am I getting desperate for relief? Yo buddy, for sure.

tango

                             Image via  Tango Santa Maria – Gotan Project – YouTube

What are some things I have tried to do to alleviate this? I’m on a gluten free diet for the most part. I eat dinner early in the evening, and I eat smaller portions. I take my supplements and herbal tinctures throughout the day; I try to spread them out. I take a good probiotic and my LLMD has me on Nystatin, an anti-fungal. I drink a solid gallon of lemon water daily and a few cops of green tea in between. No sodas and just one cup of coffee in the morning. Alka-slezer Gold is a good friend of mine and can help minimize the indigestion for a bit. I’ve also added charcoal tablets after doing research. These can help but they cannot be taken infinitely. The meds for the nausea really don’t help with indigestion. Whole different animal, I guess.

Here’s where I am today: no food as of yet. I am presently drinking green tea with some sliced fresh ginger. Water consumption is also happening. Report? No indigestion, but tummy is unsettled and my damn head hurts. Plan for the rest of the day? Maybe try and eat some plain scrambled eggs and/or have some plain chicken broth. Then, see what happens. 

Going to the doctor is not a realistic step right now. If it gets worse, or if I can’t eat at all, then I will definitely go. It’s just so difficult to try and get in to see my LLMD here without a prior appointment. Ridiculous really. In February, when I was so sick with nausea and fatigue, I called and they told me the wait was 2 weeks to see my doctor. When I pushed them and also emailed my doctor directly, I finally was able to squeeze in a few days later. I saw doc’s PA who is a seriously an awesome person, but PA diagnosed me with the flu (I did not have the flu) and I ended up back in the office 2 weeks later. Needless to say, it wasn’t very productive on top of my feeling like total crap. 

I’ve been doing a lot of research this week on the Gut and Lyme. I realize that I am probably going to have to clean up my diet even more. After almost 3 years on antibiotics, I am sure my stomach is affected. Perhaps there is residual damage as well? I have been totally off of antibiotics since November, but I am sure that getting my tummy back to “normal” is going to take some time and serious dedication. Also, trial and error. While I did well on abx in that I did not end up with a Candida infection nor C-Diff, I really have a feeling that some of the issues I am experiencing now are due to the extended use of the abx. 

Ok, friends, I am off to make some more ginger tea and do some resting. Namaste. -B