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
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
Hey all you people! I haven’t been in touch lately. School started back, and it has been a whirlwind ever since. Mostly, I come home and lay in bed to rest. I rest on the weekends so I can work through the week. Or at least try to. I’ve been off of antibiotics for almost 7 weeks now. At first, there wasn’t a considerably difference. After a few weeks, the headaches became less and the nausea was a lot less. Otherwise, things were not better or worse. But then, the first week in September, I caught a cold. My husband was in bed for three days over Labor Day weekend; I stayed as far away from him as possible! But so many people were sick at school, it was impossible to stay away from the germs.
So it got me. I held on, and I really thought I was winning the battle. But since then, things have gone south. My energy level is nil. I have a recurring sore throat on the right side and I have issues going on with my sinus. I’ll spare you the gory details but suffice to say, my sinuses are full. I can breathe through my nose most of the time, but there is stuff way up in there that comes out in the morning and evening through coughing. The body aches and the back pain are back. No appetite really. I’m guessing that the EBV is active again and maybe the Mycoplasma pneumonia load is high again. Depressing? A, just a little.
Heading to my LLMD tomorrow. While I look forward to going, I know I will walk away disappointed. Labwork takes a week, and then it is a VM recording from the doctor about the lab numbers and what is next for treatment. Nothing seems to change much. No matter what, I am guessing my doctor will end up putting me back on some antibiotics, and we move sideways? It hasn’t been a move forward in ahile by my account. While the summer was nice because I could rest as needed, I feel as though I haven’t made much progress in terms of my health since I had the Picc line last summer, 2014.
So, now what? I drag myself through every day, hoping the next day will be better. I’m finding less and less to enjoy as I am too fatigued. I have an appointment with a different doctor in November; I’m hoping to try and find some other ways to treat this along with antibiotics. I do have tons of supplements and I am trying to take some antivirals, but it got to where I was taking like 30-40 pills a day and that got old real quick. My diet needs to change. I know this. And I need to make it happen. I just get so tired!
We’ll see how tomorrow goes. At least I can tell my doctor what is going on and that in itself can be a relief. I promise to update soon.
First off, I hope everyone had an enjoyable Christmas and that it wasn’t too stressful. Ours was quiet, more quite than usual. Our winter break started Saturday, December 20th, and I had been counting the hours. Not that I dislike my job at all; I was just looking forward to the uninterrupted and unscheduled – mostly – time until returning on January 6th. The past few weeks leading up to the breAk had been wrought with both personal and work drama. More work drama than anything.
The weekend was good and then Monday and Tuesday, I was feeling the best I have felt in months! I had energy, and I was working through my lists at a nice speed! 😁 I thought I was being careful and not pushing it to hard. It was exciting. Then, bam. Party over, sucker! I woke up Christmas Eve with a sore throat, and, well, it’s been all downhill from there. While I was able to cook a turkey that day get all of the gifts wrapped, and although we had a nice romantic dinner, I felt like hell. Christmas day was worse. I literally was in bed all day. Missing a trip to visit and dinner with the wonderful in-laws, I stayed in bed and pondered my life.
I’ve really been trying to be more accepting of my situation and more accepting of my physical limitations, which can change at any given moment as I am sure many of you have experienced. My initial reactions have been to become really upset and disappointed which then leads to stress, then to sadness and depression. The 4 S slope as I have coined it! The stressful, self-indulgent, sad, slippery slope! Down, down, down.
But what I am beginning to realize is that that kind of behaviour sets me back. Making myself go through that rollercoaster changes nothing. I still do not have the energy or I am too sick to attend an event, dinner, baby shower, whatever. It also leaves me much worse off physically and mentally. I need to change my “stinking thinking” as they say in AA.
So, yes, it was indeed disappointing that I could not go to celebrate Christmas at my in-laws as planned. I wanted to spend time with them. Instead, I had a little chat with myself assessing how I felt and thinking and saying, “It will be best for me to stay home today. Between the Lyme and cold infection, I have no business running around today, and that is ok!” While this seems like such a little thing to do, I guess it psychologically gave me permission to stay home without
feeling guilty. My in-laws were gracious as always, but the best thing for me was the kindness I showed myself. I need to practice this much, much more!
While I still have a cold, I am wishing for a speedy recovery so I can still enjoy the rest of our break. How was your Christmas? Anything you would like to share about dealing with Lyme during the holidays?