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 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

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

Doc Talk – v. 2

So it’s getting close to that time again, the 3-4 month mark where I go for follow-ups with both of my doctors: the one in town and the one out of town. First, we will head to the out of town doc here in a few days. This will not be a face to face visit. It will be our (mine and my hubs) 2nd Group Visit, Group B (2nd visit of 4-5). Right. A Group Visit. This is my life as a Chronic Lyme patient. Welcome.

You may be wondering what that is all about. I am still wondering myself. The first one was interesting. Patients checked in every 15 minutes. Vitals were taken and then heart test was completed. Then, we all headed to another larger area – there were about 20 of us – and we had about a 2.5 hour visit. During this visit, our doctor provided all kinds of information to us about Lyme disease and multi-systemic issues it may and can cause. Much of this information I already knew but it was helpful to have the information presented all at once.

Then, after hearing all of the info, we were given a lab request sheet. We were told to mark some of the labs we thought we should have done based off of the information and based on what tests we have already had in the past. Now, while this wasn’t a bad idea, my main concern was “HEY, is this covered by my insurance?” And of course no doctor can anser that question. From the list provided, and after reviewing what labs I’ve had done in the past, I was still looking at  at a sizable list.

There was no face time with my doctor. I did have a couple of questions, but with so many other people vying for her time, plus my fatigue, I was ready to go. Now for the aftermath.

Luckily, this was summer because, I kid you not, I spent some 10 hours figuring out what exactly the labs codes meant, researching diagnostic codes, then researching the code numbers for the labs (my doc’s lab request did not have any lab codes on it, and THEN, talking to my insurance (yet again!) about what might be covered or not. All of this BEFORE I went to the actual lab to get the tests completed.

I can tell you that if it had not been summer break, I just would not have had any labs done because I would not have had anywhere near that kind of time to research.And, wait for it….I also received a separate bill for the little heart exam before this Group visit (I had NO idea this would be billed as a separate charge to my insurance, who then did not cover it) and I think it is like $130. I owe that to my doctor;’s office and must pay it before my 2nd Group visit next week.

Oh right, I also just received another separate bill in the mail for the dermatologist visit I had this past July. Yes, I paid when I left in July. Yes, they told me they were sending off the biopsy. No, they didn’t tell me it would be YET another bill. As a matter of fact, when I left my appointment that day, they had me pay $130 on top of the $50 co-pay because I was having a biopsy, and I wasn’t going to get charged separately for the lab work. Really? Because I just had a $350 bill just show up from some LLC lab place that I am assuming processed the biopsy? Not quite sure but that is my guess. Yes, I can call the doctor’s office. Yes, I can call the lab that has billed me. Yes, yes. It’s just so time consuming and energy zapping, and hours more wasted……I cannot imagine what navigating this whole health “care” system is like for patients way more ill and sick. It’s ridiculous but even more than that, it is CRIMINAL. Highway robbery. In our own country.

Need a doctor? No problem, just hand over ALL OF YOUR MONEY!
Heath costs are damaging.

So needless to say, as we all already know, health insurance sucks, the health system in this country sucks. I know more people than not who have been railroaded and screwed by our healthcare system and most of this has been in the past 3-4 years. As patients, we can’t get prices beforehand, we can’t really “shop” around as heath insurance companies tout because from at least what I have seen, every step of the way, not one person or entity can give you a real “answer.” They shift us around and around, and it isn’t until we get the bill that we can remotely begin to try and figure out anything and by then, everything is so convoluted, it can take days, weeks, months to try and sort anything out and even then, it is rarely to the patient’s benefit.

Anyhoo.I am trying out one more Group Visit. We’ll see. Although the information shared last time was good, honestly, there wasn’t too much I didn’t already know.And the bottom line cost of that visit, the trip, the labs, the supplements, etc. at this point are not outweighing the benefit I gained (it wasn’t much if indeed anything) so I may need to reconsider doing the Group C meeting.

Well, my people, I hope your September is going well. Stay cool and take care – B

 

 

Doc Talk – v.1

**Disclaimer:  I share my experiences not to  whine nor complain, but to hopefully allow others some insight into the day to day of a Chronic Lyme patient. Keep me in check, my peeps! Please, if I start to take on a “poor, poor me, whiny baby tone,” I beg of you to tell me!!  I need help with this because many times, my brain does not function correctly!

My ultimate goal in sharing is not to have pity bestowed. A multitude of other Lyme sufferers and Chronic illness patients are in serious need more than myself. My goal is to pull back the curtain that hides much of the truth about Lyme disease and its co-infections, the curtain that many do not know even exists, (I had so little info when beginning this Lyme gig), and to share and explore this disease while also educating and assisting others as much as I am able. My goal is also to try and process and figure out this crazy journey of life now that chronic Lyme is in the picture. A disease so controversial and misunderstood, it leaves in its wake immense suffering, blatant ignorance and denial, and untimely deaths as it continually grows at unprecedented rates everywhere in our nation as well as across the globe.

In the past two months, I’ve had 6 doctor visits. Please don’t get me wrong; I’m grateful for many things in regards to my health care: I have insurance, both my main doctors take the insurance I have from my work, many labs are covered at 100%, and right now, I can manage to pay for the insurance, for the visits, and for the meds prescribed as well as pay for a majority of uncovered (this word is not right but …Lyme brain) supplements, shots, massages, and such. I’m telling you this because as Lyme patients, finding a knowledgable doctor, an afforable doctor, and a doctor who takes insurance for Lyme treatment is near impossible. Finding one who has these qualities is like winning a trifecta!  

Now, none of these visits were your regular yearly appointments for check-ups, physicals, etc. And none of these were other visits were with other needed doctors, such as dentists or optometrists. No, all of these visits were an extension of chronic illness issues.

My usual Lyme doc visits happen every 2-3 months. Oh, hold please. Redo. My visits here with my local  Lyme doc happen once every 2-3 months. My visits with my out of town Lyme doc happen once every 4 months. This means that if everything goes as planned (cue laughter now), I will go to 8-10 visits for the year. Honestly, this isn’t too horrible. Except for the fact that because my immune system has basically been hijacked by the Lyme bacteria, and as a teacher I work in a Petri dish, I get sick with other things very easily on top of the Lyme.

You know, the run-of-the mill coldest, flus, bronchitis (bronchitises? LOL). Last year I managed to get a cold and bronchitis in the fall and then in the spring, another cold, maybe a flu (although these symptoms are similar to Lyme symptoms, and then a strange rash that knocked me out of work for a full week.

This summer, the rash that I had late spring came back again at the end of June. It made my left eye swell up and it was also on my left cheek, left jawline and on my chin. And omg, it itched fiercely!  This was a few days before the 4th of July. After seeing my doctor here and then a dermatologist, and taking steroids then applying steroid cream to the areas, it finally went away. Both doctors said dermatitis. Thanks for the insight, docs.

Many times, going to the doctor(s) is a bit depressing. Progress moves at a literal snail’s pace, if at that sometimes. And quite often, probably most of the time, we change or tweak the protocol, but we don’t immediately see any results (sometimes, we see no results). But I guess that deterioration of my body also moved very slowly. I really have no idea how long Lyme has been in my system, chipping away at my immune system, neurological system, et.all!

I’ve got another Group Appointment comng up in about 3 weeks and then my doc visit here a few weeks later. I’m keeping my fingers crossed that no other health issues come up between now and then. When I come down with regular illnesses, my body always responds in a weird, awkward and unpredicatable way so everything then is intensified and lasts longer. Like a cold. Most people can move through a cold in 5-7 days. Granted, we all hate having a cold! What misery. But for me a cold can linger on and on and quite possibly become something else, like Bronchitis.

But I do not have a regular GP anymore. I’ve tried a few new doctors out for this position, but inevitably, they know absolutely nothing about Lyme and/or brush it off as no big deal. So it just becomes a waste of time, money, and energy to go anywhere other than to my Lyme doctor. Of course, trying to get in to see the doc on the fly is nearly impossible.

Do you know someone with Lyme disease yet? You will and soon.
Check out: http://danielcameronmd.com/understand-lyme-disease/

It truly is criminal that more doctors are not trained in the area of Lyme disease, especially since it is the fastest growing infectious disease in our nation. I saw an infectious disease doctor before being diagnosed back in 2013. He was one of the steps to go through to rule out other possibilities other than CFS and FMS. He took no blood. He did NO BLOODWORK. A month later, I tested CDC positive for Lyme disease. 

Lyme disease is in many, many cases such as mine, not easily diagnosed, not easily treated and acknowledged. If this trend in medicine continues, more and more of us will be contracting Lyme and not being treated promptly nor properly.

Watch out for thos ticks, my friends, Make sure you are using preventatives  and doing tick checks every time you come in from outdoors. I certainly do not want you to become a member of the chronic Lyme club. 

Happy Sunday. Namaste. -B