treatment

Duck, Duck, Doc…#1 The General Practitioner

/ Read Between the Lyme / 8 Comments

*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?!?

/ Read Between the Lyme / 8 Comments

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

 

 

More Fatigue and No Surprise

/ Read Between the Lyme / 16 Comments

The only metaphor I know that makes any sense in trying to describe how I have been feeling since the beginning of the New Year is this: I feel like that for about the past three months, I have been holding my breath underwater, and I am just now breaking through to the surface. Hell, I know this is an old and used up cliche/metaphor. But it is a good one. Maybe it is also like having your head under the covers for too long; it gets hot, you can see, but you just want to come out for fresh air.

As I shared here Lyme test, after 4 years of treatment, I have tested positive again for Lyme. This is not from a new / recent tick bite. This is from the infection I have had all of these years. That was at the beginning of March. So in order to catch you up and not in the really long boring way, here are the highlights:

March 2 – I’m suffering from crushing fatigue and have been for several months. My attendance at work has been patchy at best. My doctor decides to put me on medical leave (honestly, such a relief). Tests for Lyme disease, Epstein Barr Virus, and thyroid are conducted.

March 8 – Results are back and I am once again (3rd time) postive for Lyme disease. The EBV is also reactiviated. Thyroid is ok (other than the Hashimoto’s). I’m a little freaked out that I’m positive for Lyme again. But this is at least the 15th or more time in the past 7 years the EBV is active again. All of my symptoms in the past few months have pointed these things, but since I feel bad that I am not at work, at least the tests validate my need for rest.

March 15 – Follow-up with my doctor. I haven’t been on any antibiotics for about 18 months. I’ve been treating the Lyme holistically. And I am happy taking that route. However, with the Lyme being active and in force, we decide that another round of an antibiotic I haven’t tried might be in order.  I am put on another week of medical leave and I add a six weeks regime of new ABX to my treatment.

 

Sleeping dog image by zipclick on Photobucket_1263059849863

Source: thesleepingdogs.net

March 27 – I head back to work, and while I am glad to get back, I am also very, very aprehensive. While at home, I rested a ton. I was able to keep to my routine treatment wise. I actually could do a few things such as sweep the floor and make dinner (not every day but still!), things I can barely if at all manage while working a full-time job. I also realize that for the past 6 months, since school started back in the fall, my like has been so limited due to the illness and to the severe fatigue. In fact, I realize that my life has literally become this cycle, Rest, Work, Rest. Every afternoon evening of a eork day is Rest. All weekend: Rest. No outside functions, no regular activities others  can accomplish such as grocery shopping, running to the bank, etc. My world has become so limited, and I am beginning to understand that the approach I have used in tackling Lyme and friends for the past 4 years is just no loner working.

April 1 – I did alright after this past week at work. But I can feel the fatigue sneaking back in. I will see my dotor for a 3 week follow-up on Wednesday. We’ll see how and if the medicaton is working and if it is helping. If I had to give a report today I would share that really not much has changed. While I do feel a smidge less fatigued, I don’t know if that it because I just came off 3 weeks of complete rest and minimal stress or if indeed the medication is helping. I’m hopeful but I just can’t be too invested in the outcome.

Today – I have to rest. I have to physically and metally prepare for the week ahead, both work and otherwise. I’ll plan on cooking us dinner this evening and possibly do a bit of laundry but only if I can manage it. It’s a rainy day and so I’m dealing with joint pain and just overall soreness and pain so we’ll see if anything actually manifests. 

I hope you and yours have a wonderful Sunday! Peace to you – Belle

 

 

 

Doc Talk – v. 2

/ Read Between the Lyme / 13 Comments

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

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**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.

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

Meltdown City, Next Stop!

/ Read Between the Lyme / 18 Comments

What brought all of this on, this visit to Meltdown City? Although I didn’t share it with you (yet), about a month ago, while I was still in school (working) I had a terrible Rash (in fact, it does deserve a capital “R”) on the left side of my face, on my left had, a few spots on both of my lower arms, and inside of my thighs. It came on suddenly. It took a over week, a trip to Urgent Care, 2 trips to my LLMD and a week out of work, along with several medications, to get rid of it. The reason I haven’t posted about this incident is – don’t laugh – is that it was pretty traumatic overall. I promise to tell the drama soon. Anyway, it finally went away, but there was no consensus as to what was the cause (except it was not parasitic).

It went away, school came to a close, my step-daughter graduated (happy dance!), summer started, on and on. Early in June, my doctor put me on this cool supplement called ATP Fuel for my low energy, and I have really been seeing some brain improvement function from it which was a real lift-me-up these past few weeks. Now, I am not saying I am “cured.” Not by any means, but I am certainly feeling like I had managed to get over a significant hump since severe fatigue has been one of my most loyal companions over these past few years!

Let’s just get downright crazy and say that mentally, I’ve had the best 2-3 weeks that I have had since before being diagnosed with Lyme in March 2013. It has sincerely been that big of a deal at, least to me. This past Wednesday, I had an itch near my left eye. Bug bite. That then spread all around my left eye, down along my jawline, and under my chin.Pretty much the same area that the Rash showed up a month ago. It was basically a battle to get into my LLMD. I do not have dermatologist, but I did call around, and I was able to get an appointment for Tuesday. However, knowing how horrible this Rash became last time (the top of my left-hand is scarred now), I saw my LLMD yesterday afternoon. To say this appointment sucked is an understatement. She put me on several medications, anti-viral, steroids, anti-itch pills, and said I must be getting into something and that it will clear up.

I asked, what if is doesn’t clear up? Answer, go to a dermatologist. When I asked if I should come back in for her to check me as well, she said no.It will clear up by Monday. Huh? I asked how will we know what is causing the Rash, and what if it comes back (you know, since this is 2 time in 4 weeks), and she basically said it may never come back. Well, yes. That is one way of looking at it. And while that in fact is true….I HAVE LYME DISEASE! It has taken over my immune system, MY BODY! I’ve had weird rashes in the past, I get cold sores a lot, I have chronic EBV. SO LIKE FOR REALS, LADY. Saying that it might never return is like laughing a the Gods. I don’t like this plan.

My left eye was almost swollen shut this morning, and the rash had spread to the other side of my nose and there was more on my left cheek. My mom picked up my meds for me, and I got started right away. Everything just closed in on me today. Not from this damn stupid rash, really. I’m just tired. I swing from one health crisis to another with barely any time in between to just feel like I have JUST Lyme. I’m not even in school right now, surrounded by close to 4, 000 people a day. Yet, I have a recurring Rash that my LLMD doesn’t really think is an issue. So yeah, the Meltdown City. In the shower. Me, myself, and I.

I think at the crux of all of this is the truth I am beginning to realize, or maybe now I am closer to accepting, is that the LLMD that has helped me thus far, is not going to be the doctor to take me into remission. Not from where I am right now, and not with how I am being treated (protocol). There are no other LLMDs here in the HOUSTON area. Seriously. It is too risky for doctors to advertise that they treat Lyme disease and many don’t. They do not have the first clue about Lyme disease. Truth. So, I continue to periodically request an LLMD list from the Texas Lyme Disease Association hoping that maybe a new name has been listed. And that the doctor listed takes insurance. Most do not.

This causes a whole other wave of worry to hit. Going to a doctor who does not take insurance means lots of money out of pocket. Depending on the doctor, it could run $700-$1500 per visit, not including meds, supplements, etc. LLMD doctors usually do not take insurance because they do not want to be beholden nor required to treat Lyme only by the approved and antiquated guidelines of the USA set by the Infectious Disease Society of America (IDSA). Many doctors across the US have been stripped of their license to practice for not following these corrupt guidelines. Of course though, insurance companies use these IDSA guidelines as standards for care and so even if one is LUCKY enough to find an LLMD who takes insurance, some things are not covered at all because the treatment doesn’t fall within the -again- corrupted and antiquated guidelines. 

But I have an LLMD that takes insurance and here close enough to where I live. I thought I was so lucky! And yes, she saved my life. I need more now though. My visits with her consist of about 10 minutes time. I list out everything, she focuses on the most detrimental at the time, reviews my blood work from the last visit, usually 3 months ago, and based on that she tells me where we are going, and sends me for blood work – labs we will review 3 months from now. WTH. There is no talking about nor treating any lingering symptoms, talking about detox, diet, anything really at all else about this complex stuff happening to me. Co-infections being addressed? Not at all. 

Finding someone new that I have to pay out of pocket, that is probably 3-5 hours away, is just freaking me out a bit. On top of all of that, I am worried about how much more I can work. I’ve pushed through and I want to work, but this past year has been extremely tough. I’ve been sick with other things more than not, and I am wondering, maybe I need to give my immune system more time to heal before I mix it up in the petri dish of high school. And since my LLMD only spends 10 minutes with me, I try to bring this up, but again, she also works crisis to crisis and that is just not cutting it anymore. Then, if I can’t work, how do I go see a doctor who doesn’t take insurance? How does all of this get managed when my eye is almost swollen shut, and I want to itch off the left side of my face? 

erupting-volcano-night-17297748Oiy. I just do not know. I’m trying to wrap my head around everything right now. I may have to visit Meltdown City a few more times before I get it all figured out.

I hope you and yours have a safe and wonderful 4th. Namaste, my peoples. – Belle

 

P.S. Maybe read some Declaration of Independence, eat a burger, drink a brew and maybe read a little taste of where I was last 4th of July – Fire in the Hole

 

How Are Lyme Disease and AIDS Alike?

/ Read Between the Lyme / 12 Comments

 

Since I have some time to do more research right now and the motivation to do so, I have been digging into the aspects of the Lyme controversy in our country (USA).  I have been seeing many posts and articles recently that in some way or another compare Lyme disease and its prevalence to that of several aspects of AIDS epidemic here in the USA. As a young 10-20 year old growing up throughout these crisis years, the epidemic was not only the insanely tragic, it was a completely mishandled disease from the start, and ignored way too long by the science and medical fields, think CDC, think Infectious Disease Society of America, think NIH, and on and on, thus costing thousands upon thousands of lives.  I just wasn’t so sure that comparing these 2 epidemics would work logically.

But what are some reasons I thought this analogy wouldn’t work? Well, Lyme doesn’t necessarily work as quickly in killing the body as AIDS has and still does (although now we have many ways to treat this infection so there are less deaths, thank goodness). Lyme is a different animal in that respect. The dead bodies of Lyme victims are not necessarily piling up on anyone’s doorstep. We don’t see Lyme disease in the news every day like we did with AIDS. Also, I felt that somehow by comparing the two infectious diseases that I was somehow trying to diminish the horrendous impact that AIDS made on people and their families, and especially on the gay community. I have no idea why I felt this way. I just did. Actually researching though has led me to a new conclusion.

skulls-1433178__180

In fact, Yes, the Lyme epidemic is in many ways VERY similar to the AIDS epidemic. 

Let’s roll it back a few years, I mean DECADES.

“Besides Acquired Immunodeficiency Syndrome (AIDS), Lyme disease is now the most important “new” disease facing us today.”

Let that just simmer for a moment. “Most important.”

The above quote is taken from an unclassified scientific report conducted by our military. The report is titled, TICKS AND TICKBORNE DISEASES AFFECTING MILITARY PERSONNEL.  Written in September 1989, this report is ” Approved for public release; distribution is unlimited. Conducted by Jerome Goddard, Ph.D. Medical Entomology Section, Epidemiology Division, USAF School of Aerospace Medicine, Human Systems Division (AFSC) Brooks Air Force Base, Texas 78235-5301.

Again, this extensive report was written in 1989 after extensive research. By our military. Here we are, almost 30 years later, and let me impress upon you, dear reader, there has been MINUSCULE, almost NIL, progress in researching and understanding of this disease, accurate testing and diagnosis of this disease, and in the treatment of this disease. 

In 2013, the CDC reported findings from 2 separate entities that there are approximately 300,000 + new cases of Lyme disease every year. Please find those reports here:  http://www.cdc.gov/lyme/stats/humancases.html. The CDC states that it receives about 30,000 cases of Lyme a year (this number is very low as these are only cases reported that meet the almost impossible requirements to identify Lyme set by IDSA.) The other reports the CDC lists on its page are both positive tested Lyme cases and clinical diagnosed Lyme cases, thus the 300,000+.

As Lyme sufferers, like our fellow AIDS victims, we are:

1. Ostracised.

And yet. Here it is 2016. Absolutely nothing has changed. Just like AIDS sufferers, Lyme patients are shunned by doctors who have no experience with Lyme at all, or who rely strictly on the CDC testing criteria and the IDSA treatment guidelines. Even after all of these years, IDSA has yet change any of its treatment guidelines since 2006 when it published its dictated, repressive, and self-serving protocols. We are not treated well nor correctly by the medical field. I myself have been to several doctors who did not believe me nor my symptoms and just blew me off. We are labeled as hypochondriacs and/or attention seekers by both the medical community and our families and friends. Not being believed about a sickness that is so REAL is devastating both physically and emotionally.

2. Untreated.

Similar to AIDS patients in the early 80s and into the 90s, Lyme victims are not receiving the needed treatment to assist them in healing. Since there is so little being invested in Lyme research and understanding, patients must go to extreme lengths to find a doctor who will take them on and treat them as needed according to many skeletal, neuro, cardiac, and on and on manifestations of this disease. Lyme Literate doctors or LLMDs, do not take health insurance because of the possible legal implications. There have been many doctors brought before state medical boards and stripped of their medical licenses because the doctor had not followed the strict IDSA treatment. So our treatment, if we can even be diagnosed correctly, is extremely limited. Many of us seek our doctors in other states and in other countries.

3. Denied

Like many of those ill with AIDS, we are denied at every turn while trying to get diagnosed and treated promptly (this can happen via better testing and meticulous review  and understanding of clinical symptoms). We are told that our symptoms are psychosomatic, all in our head, and we are brushed off or completely misdiagnosed with an autoimmune disease of which Lyme can and is in many, many cases, the root cause, such as Lupus, Rheumatoid Arthritis, MS, ALS, Fibromyalgia, or Chronic Fatigue just to name a few. We are denied coverage by health insurances due the published treatment guidelines from IDSA a DECADE ago. We are denied the opportunity to keep our jobs, our families, and our dignity.

4. (we are) DYING.

But, people might say, well, we never really hear of anyone dying due to Lyme disease whereas throughout the 80s there were reports every single day about AIDS causalities. This is true. First and foremost, I will say again, all aspects of Lyme are being silenced on every front, from politicians to medical practitioners, from health insurers to the media outlets. But the biggest reason we do not hear about Death by Lyme is because an exorbitant amount of Lyme disease sufferers take their own lives. We take our desperate matters into our own hands. Suicide among Lyme victims is in itself an epidemic. Much of what we know about this is anecdotal, again, due to lack of funding and research. For more information, this is a great start “Lyme Disease and Suicide, an Ignored Problem.”

These are just a few things that Lyme disease and its victims has in common with AIDS and its victims. And to refer back to the quote at the beginning, we’ve known for over 30 years that Lyme disease is an EPIDEMIC.

 Is Lyme an epidemic? Yes, it is and we’ve known this for over 30 years! Unfortunately, it is a silent one that leaves us rotting from the inside out, slowly but surely. Hopefully, like the AIDS community, the Lyme community can continue becoming a formidable movement, one that will hopefully save lives now and in the future!

Do you have any other examples of how these 2 diseases are similar? Or different? Could or should we possibly as a community learn from the AIDS epidemic and how it was forged into a massive movement? Just having all kinds of thoughts on this topic. Please leave a comment below. Thanks for reading. Peace – Belle

 

 

 

Just Because You Said It….

/ Read Between the Lyme / 6 Comments

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

Nobody Said it was Going to be Easy

/ Read Between the Lyme / 11 Comments

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 Symptoms, Fire 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