Hola, peoples. Summer break is in full swing, and I am very glad to report that I have “survived” another school year. BTW, surviving is only related to my health and by no means implies that I do not love my work because, I do love my work! Yes, there were many, many bumps in the road health-wise, but with tons of support from family, friends, and my colleagues and students, I have made it to a 4th summer break post-Lyme diagnosis! Woo hoo!
Just a few weeks ago, I finally found the time and the wherewithal to submit an official complaint to the state medical board about the infectious disease doctor who saw me in January 2013. This doctor was completely terrible. I debated whether or not to file a complaint, I am not one to rock the boat, but after many in my Lyme support group continued to discuss the importance of bringing the issues with Lyme, the diagnosis, the care needed, to the state medical board, I decided that I needed to do so. Sending to him was the last resort of my GP who had been trying to treat me for 3 years of unexplained symptoms. While I am quite positive that my complaint will not even warrant an “investigation,” I am told that at the very least, it gets recorded, thus, it can be helpful in the long run for the continued fight for awareness of Lyme disease.
As advocates, we have to start somewhere. I debated about submitting a complaint. But, several of the members of the group are also very active in attending the state medical board meetings, in particular to communicate about Lyme disease and lack of diagnosis and treatment options during the open forum portion of the meetings. Right now, I am unable to attend for a variety of reasons, but I really do hope that some day soon, I can be a much more active participant in pushing for much more Lyme Disease Awareness in Texas.
Too many people are being lost to the monster that is Lyme.
Update: TMB reviewed my complaint and sent me a letter stating that my complaint did not “warrant an investigation” because the infectious disease doctor was following guidelines (looking for the bull’s eye rash – only found in 30-50% of patients). I did not have the rash. I just had new daily headaches, lower back pain, nausea, severe fatigue, joint pain, cognitive issues and severe neck pain. And, I had had these symptoms for over 3 years off and on and that is exactly why my GP sent me to and ID doctor. She was stumped and had tested me for as many other things as she could to rule out other diseases. The ID doctor told me to drink more water and carry my purse on the opposite side. THIS DOCTOR DID NOT HELP ME AT ALL. He sent me back to my GP.
I guess I am a lucky one of the up to 50% that do not present with a rash that the Lyme infection was caught. Otherwise, where would I be? Way worse, and literally dying to find the correct diagnosis.
Although I had already started this blog before I took the step to submit the complaint, I do feel like I have taken the first step in the right direction – the direction of real Advocacy.
There are SO many of us not getting diagnosed correctly, SO many of us who end up with Chronic Lyme, SO many of us not receiving treatment. It is wrong, and it is time for me to SPEAK UP MUCH LOUDER!!
I want to send out a huge thank you to LymeStats for permission to use its AWESOME informative posters!! Visit the website today if you can!!
Do you do any advocacy work? I would love to hear about it! I hope you and your people are having a wonderful weekend. Please make sure to do tick checks. Be safe – Belle
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?
Oiy. 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
What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂
So we’ve (as in my husband and I – we are both teachers) been on summer break almost a month now. It has been pure heaven. What have I been doing? Producing? Well absolutely nothing, my dear friends. I’ve had some doctor appointments, dentist, eye doc, you know, just those things that have been impossible for me to manage while working because of the massive fatigue.
But otherwise? I have nothing to show. And how do I feel about this? Delightful!! Fantastic! Superb! It is down right, totally fine. I used to feel guilty about not doing anything, or not being productive every minute of the day. I was always busy. Now, at the time, I enjoyed being active, working, exercising, socializing, and such. But Lyme disease changed all of that.
Over the years (even before I knew I was ill), I’ve struggled with a lot of guilt and angst about not doing enough (these are, of course, self imposed standards of “enough”). I would push myself, as I always have, to make “things happen,” to “get er done” as we say in Texas. While resting, I would stress out about the things I had (self imposed!) to accomplish that I hadn’t completed. Then came along nausea, headaches, joint, pain, severe fatigue. Well, all of this made for a witch’s brew of toil and trouble!
Now, I admit, it has taken time to make this change and there are still times when I click into that previous me mode, and I take it to the limit. It’s usually not a good thing though and if I can catch myself before that manic phase kicks in, well everything is better overall.
Looking back over my 15 years in education (I worked 10 years outside of education so I most definitely appreciate the time off), I realize that I have worked almost every summer for the first 10 years. First, out of necessity, and then, for the extra money and experiences. These past 3 summers of Lyme have been about treating and resting. Actually, the first summer after being diagnosed I taught a 3 week class. What was I thinking? At the time, I thought, oh good, extra money and this Lyme thing will probably be done by the end of this summer after treating for about 4 months at that point. HA HA!!! That was BEYOND wishful thinking for reals!
Anyway, I know this post is kinda all over the place, but I guess one point I am trying to make is Take it Easy. Don’t Kill Yourself trying to do everything you did before. Your body has to heal. You beating yourself up about it is certainly NOT GOING TO HELP your recovery process. Believe me, I learned this the hard way.
What are some ways you treat yourself well? In what ways are you kind to yourself? Please add your ideas to the comments below. 🙂
The Deafening Silence Returns: Lyme and AIDS.
Do you have any other examples of how AIDS and Lyme disease are similar as epidemics? Or different?
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.
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:
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.
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.
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
Today has been a tough one symptom-wise. Since we are on break, the last few weeks have been pretty sweet. I can rest when I need to so this helps immensely. But today. Oiy.
I’ve had overall soreness since I awoke at 5 a.m. My lower back, hips, right knee, and ankles have been aching. I canceled an appointment today because, well, yeah, I wasn’t making it. The bed has been my constant companion today along with 2 heating pads and some medication. Oh and some loyal puppies. Maybe I’m herxing. Its been a week or so since I’ve had one. IDK.
But tomorrow is a new day. The quote above just spoke to me in all the right ways. I hope all is golden in your neck of the woods. Peace, friends -B
P.S. Pups in a row from top: Chino, Pico, Boo Boo. 😍
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I know we all ask ourselves this same question at any given time of the day, week, or year. But since beginning my journey with a chronic illness, I ask it even more than I used to. And now when I ask, sometimes, I don’t know the answer and that is so freaking scary.
An introspective person by nature, I live in my inside world much of the time. And I like it. In fact, if I don’t get enough of that time on the inside, it makes me a little bit cra cra. Stressed. Deflated. I’m not anti-social, just to clarify. I like people. Learning the intricacies of human nature is something of a calling for me; I am a hard-core people watcher. At least I used to be. I used to be better at people. You know, observing them, listening to them, interacting with them. My core has always been my sanctuary. Then along came Lyme.
Although not a fan of worn out cliches, Lyme indeed threw me a “curveball.” Not in the sense that I had my life all planned out and wham, but in the sense that, well, I never saw it, this, Lyme disease, coming. Then, in reality, everyone can use this cliche. I mean, I would guess that most of us are not sitting around thinking, “oh, today something life-altering will happen to me.” It just does. It happens. We do our best to deal and to move on from whatever is thrown at us.
It’s just sometimes, I feel like I missed the curveball. I missed the pitch, the swing, hell, I missed most of the game. It’s almost as if I have been plunked down onto the field, and we’re well into the 8th inning, and friends, I am not winning. I don’t have a strategy anymore. I’m confused about what inning it is. I’m calling a time out with none left. It’s a weird feeling. Maybe not so much as a feeling of being altogether lost, but a feeling of being very disorientated.
Not remembering how to spell words, how to say a certain word, how to have conversations, are only a few samples of the brain issues related to Lyme that I experience. “This [Lyme disease] affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts,” Dr. Raxlen adds. Ergo the missing of the curveball pitch. Ergo the forgetting of people’s names, of what I just read, of what I just said 5 minutes ago. Even my long-term memory is in shambles sometimes. I try to recall something, digging deep, sifting through that soupy glob of eating cotton candy at a carnival when I was six, scrubbing dishes at the little Mexican restaurant where I worked when I was nineteen, and throwing bales of hay into the wagon when I was ten, all the while merely just trying to remember how to say “FHA” without stuttering 10 times when I get the the “H” on the phone with a customer rep. And, yes, this did just happen to me. Embarrassed doesn’t even begin to describe what I felt as I struggled to get the sound out of my mouth. Let’s try lost, disconcerted, terrified. Yes, that sounds about right.
How will I be able to stay whole if the very center of myself is starting to fade away? If I can no longer reach my inner sanctuary to have a clarity of vision? To know Who I am, my true authentic self?
Holding on with all of my might, embracing all the pieces available to me still, I’m going to get my head back into the game with as much clarity as I can muster, so to speak.
Take care Warriors.
Until next time – B
**If you get a chance, check out “This is Your Brain on Lyme” by Sillia. It explains in much greater detail and with less philosophical musings, the effects of Lyme on the human Brain. A huge thanks to Sillia.