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.

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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.

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                             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

 

Fatigue, I Hardly Knew Ye

I really never knew what “fatigue” was until I contracted Lyme disease. Honestly, I cannot even think of a useful metaphor to describe real life altering fatigue. I could say it feels like cement blocks are tied to your feet, but that truly only tells half the story. I could say it feels like you are stuck in quicksand and cannot move, but again, only a slice of the true experience. True fatigue cannot be explained easily to those who have never experienced it for any length of time. Maybe imagine if you will how you have felt at your MOST TIRED. Where you cannot even move. And then, try imagining experienceing this daily for months and even years. Fatigue encompasses everything: the physical, the mental, and the emotional. Not one aspect of being a human is left out from the fangs of fatigue.

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I know what tired means, and I am sure you all do too. And sometimes, being tired is a good thing. It can mean that you had a productive and busy day. I remember when I was a kid, I would be tired from running around all over outside all day. Having dinner, a bath and then falling right to sleep conjures a happy memory. But fatigue? Real fatigue? I never knew ye before this. Now, I can pinpoint the ebbs and flows as accurately as a Richter scale.

Since before being diagnosed with Lyme in March 2013, I would suffer phases of fatigue. It was cyclical and so I attributed it, during those times, as just pushing myself too hard, taking on too many projects, doing too many activities. It would linger for a bit and then disappear. Gone are those care-free days. Not anymore. The fatigue has latched on and for the past few years, I have only really experienced varying degrees of fatigue. But it all boils down to the same thing: I’m too exhausted to do much of anything.

I completely understand that people who have not experienced severe fatigue struggle in trying to relate. I did as well in my Pre-Lyme life. But fatigue is not being tired. If I am tired, I sleep. I sleep and then feel rested and ready to go. With fatigue, not so fast. I can be soooo wiped out and yet. When I climb into bed, I may not be able to sleep. I go to bed tired and wake-up tired. During February, it was even worse. I could barely get up and go to work. Some days I just didn’t make it.

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Never in my previous life had I spent a whole entire day in bed because I was “tired.” Now, that happens periodically. There have been several weekends this spring where I only manage to get out of bed to use the restroom and maybe to eat. Even eating can feel like an overwhelming burden sometimes. For a few weeks this past February, I would be so fatigued, I woulod actually feel sick to my stomach if i had to move around at all. Now that is some “sh*t just got real” stuff.

And yes, my doctors and I have run the gambit as far as making sure nothing else besides Lyme is causing this issue. Regularly, my doctors check my vitamin B and D levels. I give myself shots of B as well as Glutathione (helps the body make energy) on a weekly basis. I have cut almost all sugar out of my diet (not all but a lot!), I only drink one cup of coffee a day (usually!) and I steer away from caffeine the rest of the day. With help from medication, I can in fact sleep a solid 8 hours without waking up with joint pain during the night like I was doing before treatment.

Still. The fatigue hangs on. Being so tired makes it hard to concentrate, hard to be productive, hard to communicate. Sometimes, I just try to stay away from people because it is so exhausting. Sometimes, merely watching television is an overwhelming activity. Sometimes, I feel like I am looking from the outside in on myself and I wonder, WTH?

One story that is actually very helpful in communicating fatigue to “normal” people is the Spoon Theory written by Christine Miserandino @ www.butyoudontlooksick.com  This anecdote has helped me as well as some of my family and friends to understand in a relatable way.

Luckily, right now, I am on an upswing (if you will) as far as energy is concerned. Now, let’s not get crazy – this means that I can basically get through the day at work (a big deal!) and then rest in the evenings and on the weekends. I am not choosy; I will take whatever improvement I can get at this point.

I hope this post finds you healthy and happy, my friends. Until we meet again – Belle

 

 

 

Stop Making Plans

So here we are, a Thursday afternoon. Another day of rain. Another day of school closure. Yes, you are correct. We live in the Houston area. Our little own piece of paradise or the “mud pit” as my HB calls it is located outside of the metro area and just west enough to avoid the horrible and devastating flooding that has been happening.

With all of that in mind, my own small world is truly not of any concern nor should it be.

And yet, I will share. Yesterday, one of my friends, let’s refer to her as WF, texted and invited us to meet her and her husband for dinner. My HB was gone to get groceries and run errands so we instead decided this evening would work better. OK. Cool.

Except that, and I know this very well, often, because of my symptoms, we have to cancel plans. My friends know this as well. The day started with my stomach in turmoil. Headache. It rained for several hours this morning. Joy. I took anti-nausea meds and lay back down for a few hours. Back up about 2 p.m. I went outside with the dogs and got a bit of fresh air. Back inside to do laundry, mopping, and such well, you know, “mud pit.” I consumed a few crackers with almond butter. Then, the nausea returned. The bandage is to take the meds…and I have been doing this now for a few months. Instead, I drank some alka-selzer gold – no aspirin – which can help a bit.

Still no relief. The only way to describe what it is like to a non-lymie is it feels like the flu. Headache accompanied by a nauseated tummy with a possible side of indigestion. Lots of fun. A perfect situation to go out to eat at a restaurant. Yeah, not so much.

The conclusion? We had to cancel. My HB kept asking me if I just wanted to go and have drinks, if I wanted to go without him. I know he meant well, but feeling bad is feeling bad. In fact, he’s cooking up some vegetables right now and the smell is making me nauseated. Please don’t tell him.

Anyway, to make this long story longer, when I told my HB that I was feeling yucky and that I couldn’t make it, he said, “Really, you just shouldn’t make any plans. You always cancel.”  Wow. OK. Yes, there is a lot of truth in this statement. And honestly  recognizing that truth is what grabbed and twisted my heart. I could only reply, “You are right.”

Still. While I do know that breaking plans is disappointing not just for me but for everyone involved, I just shouldn’t do it at all? Then what? I can barely keep up socially at all with my friends and family. I miss more functions than I can attend, that’s for sure. But, I don’t know. Anyway, I’m back in bed now, trying desperately not to be bummed out about it all but it’s pretty much not working.

I short change everyone in my life. I realize that yes, I am sick, but disappointing so many other people surely has taken its toll on me as a person. I feel less than. Not all of the time but definitely right now. My friends were gracious as always about our cancellation. But for me? My heart still feels twisted up.

Be good and safe, my people. -B

Just Because You Said It….

Doesn’t make it so! Over the past few months, this is what I wanted to say several times to a doctor I decided to “try” out.

After testing CDC positive for Lyme disease again in February, even with 3 years of treatment under my belt, I won’t lie. I was feeling really lost as far as how to progress with a treatment plan. My LLMD put me on a Z pack for 5 days and that was it. I am sure he did not want to throw me back onto antibiotics if at all possible. But still. I was really not feeling confident in what path we would take at this point in the game.

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A friend of mine had recently visited a local rheumatologist. I reviewed the doctor’s website, and it actually advertises that she treats for Lyme disease. Oh, the awesome feeling I had! Most doctors know nothing about Lyme and about nil advertise Lyme on their website. Yes, to say the least, I got my hopes up. The further to fall, some would say.

And lo and behold, she knew nothing about Lyme. She prescribed me Lyrica for my fibromylgia pain on my first visit to her, without any labwork, without checking other diagnostic criteria I expected. She ordered about 15 vials of blood taken to test for other auto-immune diseases. When I told her I had been treating Lyme, she actually asked me if I had been bitten by a tick. Seriously!?! In almost the same breath, she told me that there should have been no reason for my being put on antibiotics for so long. I felt the pit in my stomach growing. I told her about  the severe fatigue I was experiencing. I brought her the bloodwork showing my CDC positive results.

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Honestly, I don’t think she even looked at the lab report. I did a follow-up visit but it was more of the same. Although I was glad to know that I did not test positive for any other issues, she did not help me at all. I am not taking the Lyrica; I have decided, thanks to my 2 other doctors who do know about Lyme disease, to pursue a more natural approach to treatment.

I guess I knew that it was too good to be true that this doctor I tried out really would know Lyme. While this was disappointment, it wasn’t necessarily unexpected. However, what was somewhat unsettling is how quickly she was willing to put me on medication. Not antibiotics mind you, but the Lyrica. For  my severe fatigue, she told me to drink more caffeine. I suggested this would not be good for my adrenals and she stated that my adrenals are probably shot anyway so it wouldn’t make a difference. I was shocked. This was the last straw.

Lesson learned? This whole incident did emphasize that my 2 LLMDs know what they are doing, at least for me personally.

I hope you had a great weekend. I’m back at it; fighting the good fight. Peace – B

Winner, Winner!

These past 3 weeks have been kind of a blur. Week before last, I had severe nausea. No vomiting. But let me tell you, the nausea kicked my butt. I missed a couple of days of work, and it was a huge pain to get into my doctor’s office. I saw her PA and he prescribed me an anti-nausea medication along with Tama -Flu. He told me that most likely I had picked up a bug. And since I am a teacher, this seemed plausible. Except for the fact that my left elbow has been hurting daily, my left knee has been hurting, and there’s the nausea to top it all off.

I took all of my meds as instructed. Then last week, I caught a cold, I guess. Luckily, I already had an appointment with my doctor that I had made months in advance and forgot to cancel. This time I had all of the above plus lower back pain and the incessant cough. After xrays for my back and a check-up, I was diagnosed with Bronchitis which I do get occassionlly.  I was sent home with antibiotics and a day off from work. Before I left the office, my doctor ran a CBC as well as a Lyme test. She does this almost every 3 months to see what if anything is showing up. You can check out more information about Lyme disease testing here.

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Honestly, I didn’t think twice about the bloodwork since it is done so regularly and most of the time, not much changes. This time, however, I am a winner of the Lyme contest! I tested 100% CDC positive for Lyme. Again. I have not had this result since I tested almost 3 years ago to the day when I was first diagnosed. Yet, this is not a new infection. In fact, this is the SAME infection as I have had for several years now!

I am sure this is why I have felt yucky these past few weeks with no relief.

My guess is that since I was taken off of the antibiotics in November, the bacteria have now come out to play. Oh, Borrelia burgdorferi, you are definitely a worthy opponent! See, this bacteria is very smart. It can and will leave the bloodstream to hide in tissues, joints, muscles, brain, nerves. Anywhere it can burrow to be out of harm’s way. It can also build cysts around itself for defense.  Anyway, NOW WHAT? My doctor put me on a Z pack. But that is only for 5 days. What am I doing about this for the next 3 weeks until I see her again and my other doctor out of town? As you can see, I’m a little freaked out about it all. I have a call into my doctor to check on this treatment protocol and in the meantime, I am going to see a Rheumatologist who supposedly treats Lyme. We’ll see.

All I know is I have to keep trying whatever I can to get rid of this infection. It has reared its ugly head at a time I thought I could move beyond traditional medicine to treat and boost my immune system. But it has proven me wrong for now. I hope all is well in Bloggerland. Take care and make sure you always assume ticks are out there whever you live!

Peace – B

 

 

Nobody Said it was Going to be Easy

TGIF! Wow. What a week. I really hope yours was better than mine. As I have mentioned in some of my previous posts Turbulence of Lyme SymptomsFire in the Hole, and Derailed, there is a lot of inconsistency in how Lyme will manifest itself each and every day. There are some things, in my case, that stay pretty constant such as daily headaches, joint pain, and fatigue. But then there are those other issues that crop up from time to time, I guess maybe they are flares?, and it is impossible to prepare. What’s the saying, the devil is in the details?

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And so last Sunday, I started having severe nausea. It lasted the entire day. I couldn’t eat, sleep or do anything. I just laid in bed, trying not to move around. The moving made the nausea worse. Indeed, it was a day where I just wished I could get out of my body for even like 10 minutes to get some relief. I chalked it up to eating some jalapeno sausage that morning; I knew I shouldn’t have eaten it but it was delish but soooo not worth it.

Unfortunately, no. The illicit sausage was not the problem. On Monday, when I tried to get up to get myself ready for work, I felt really nauseated. Then, the headache joined in. There was no way I could make it to work, let alone teach all day. Monday and Tuesday were more of the same. In the meantime, I was trying desperately to get into my Lyme doctor (LLMD) but there were no appointments available- for the entire week. Whaa? They were very clear that they could NOT fit me in even if I came in when they opened and waited. When I explained again my symptoms, the front desk told me that a nurse would return my call that afternoon. That was Tuesday. By Wednesday evening, no one had called me. Although I was able to get up and go to work on Wednesday, by that afternoon the nausea was back rearing its ugly head. Now, please do not think that I have an entitlement issue. I realize doctors are extremely busy and overbooked. I realize that there are other patients out there who also need to get in for a visit.

On the flip side though, this is my doctor who is treating me for Lyme disease. I can’t just go “anywhere” to get treatment. Other doctors, and almost all here in the South, are not trained on Lyme nor do they actually believe it exists here in Texas. This is the state of the medical options we have for Lyme here and in way too many other places in the US. In fact, Lyme is endemic to Texas. Check out this research done by Texas A & M University “Lyme Endemic to Texas.” Thus, going to another doctor is really more of a waste of time than anything. The ER was an option if I started having other issues, but mostly it was the severe nausea that was the new thing. All of my other symptoms are dealt with in the daily grind; they ebb and flow. But the nausea. God, it was (is) the worst.

It feels like I need to throw up (sorry TMI!) but I can’t. That kind of nausea. No vomiting though. I tried to stay very hydrated. I tried eating Saltines off and on. Yet, about 30 minutes after eating or drinking tea or Sprite, hello tummy monster! Anyway, I emailed my doctor, and I was able to get in yesterday afternoon. Supposedly, I have a virus. I say supposedly because honestly, I think it is more Lyme related than anything else. But I took what I could get which at this point was to get some sort of relief from this symptom. I was prescribed Tamiflu and anti-nausea meds and told to come back next week if it was still going on. Today was better because of the anti-nausea meds, but I’m still having experiencing the nausea.

This is how the Lyme bacteria works. It is a very stealthy and intelligent. According to Lymedisease.org, “Lyme disease is caused by a spirochete—a corkscrew-shaped bacterium called Borrelia burgdorferi. If not treated as soon as infected, then the chances of it reproducing and getting into every system of one’s body is extremely probable. Now granted, not everything can be attributed to Lyme. But for me, most of the time, my symptoms are directly related to Lyme disease.

Again, I hope you all had a much better weekly journey than I did. Take care – B

 

 

 

A Rallying Cry

When first diagnosed with Lyme disease, and after learning more about it, my attitude (if indeed I had one; I was extremely sick) was one of “OK, I got this.”

When my doctor said that most likely Lyme had been in my system for awhile, perhaps 10-20 years before it wore me completely  down, and that it might take awhile before I would start feeling better, I thought “OK, I got this.”

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When I passed the year mark of being in treatment, and I was not feeling much better, I still believed, “OK, I got this.”

Now, after almost 3 years of treatment, after endless months of medications and supplements, after having a PICC line, after thinking at times when I have been so very ill that I might die, or that I want to die to get some relief from these symptoms, after giving up so many things (activities, trips, relationships), I still know in my heart that  “I GOT THIS.”

Do you have a rallying cry or something you can tell yourself when things get tough? Please share!

Peace – B     P.S. I had to add the other 2 photos for sure 🙂

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