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

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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

 

 

What’s the Sitch?

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.

 

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

Dear Western Medicine: The Break-Up Letter

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

 

Doc Talk v. 3

I have 2 Lyme doctors now: one in town and one out of town. The doctor here is the one who tested me and diagnosed Lyme disease about 4 years ago. I have been in treatment since. I see my doctor in town about every 3 months.

I began seeing my out of town doctor (OT) a little over a year ago. Selecting this doctor was based on the fact that the office accepts insurance and also based on recommendations from a Facebook Lyme group I frequent. Getting to these appointments involve a 3+ hour drive one way and a stayover if at all possible. This doctor likes to see me every 4 months.

However, my OT doctor will not be accepting insurance anymore at the beginning of March. Visit costs will start at $300 and up. My insurance will not reimburse me at all for these visits. So, now what? Treatment with this doctor has entailed using herbal drops and supplements. Treatment has also focused on a more holistic approach at least for me since now I am on the chronic stage of this disease.  Visits last usually a solid 30 minutes. OT doctor has caught more issues with my thyroid and added medication that seems to be helping with energy levels. OT doctor’s approach is multi-system, an approach I think is in my best interest.

My doctor in town (let’s go with IT from here) continues to accept insurance. And while I have much respect for my IT doctor, the past few years, I have made little progress in my recovery with this doctor. Appointments require my taking a day off of work (it takes a good 90 minutes to just get to the office). I no longer have any sick days which means I am docked pay. I used up all of my extensive bank in the past 4 years. Then, I may get 8-10 minutes with the doctor, or, like this last time, with the PA. Now, don’t get me wrong; the PA is very sweet but not on top of what is going on with my treatment. Yes. I have a file about 8-10 inches thick, but again, they spend a like 8-10 minutes total on a visit with a patient.

I hate to complain. I know that I am really LUCKY, not only to have insurance, but to have a doctor closer to me who takes insurance. But then again, if I am not really making any progress……I just don’t know. I want more from my IT doctor, more information, a more detailed treatment plan, more time with the doctor at my appointments. Yet, this is not going to happen.

Staying with the OT doctor is going to be pretty costly. None of the herbal drops nor supplements are covered by insurance (the additional thyroid med is not that is it). I’ve managed to pay for these in the past but if now there is another $300+ per visit…you get the picture. Of course, bottom line is improving my health.

I have one more appointment with OT doctor before the change to no insurance so I am hoping I can get some more solid information from OT about possible costs, etc. if I continue to be a patient. I want to stay in treatment with OT. We’ll see.

At this point in the game, my case of Lyme is chronic. There is no way around it.  Of course if I had my choice with no worries about money (as if any of us have this option!), I would want to see Dr. Horowitz and/or Dr. Jemsek in D.C. For either doctors (if I could even get in – some wait 1-2 years for appointment) it would then cost thousands for treatment.  It is criminal that Lyme patients do not get the needed nor correct care in this country.

On that note, friends, I am off. Time for a nap. Best to you and yours – B

CDC Global Credibility in Jeopardy over Lyme Policy | Jenna Luche-Thayer | LinkedIn

This is an excellent in-depth article about our healthcare crisis here in the USA in regards to Lyme disease and co-infections. Please take a few minutes to read and process the continued negative results of the CDC not addressing this EPIDEMIC.

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