When the anniversary of my diagnosis of Lyme disease comes along each year, I get a little freaked out. It’s irrational. But it does make me pause and reflect (which isn’t a terrible thing to do necessarily).
After about 4 years of experiencing what appeared to me as random and some migrating symptoms, after seeing 7-8 different doctors, mostly specialists, after having an MRI, a variety of blood test (more than once), and after becoming more and more ill, I lucked into seeing a doctor who tested me for Lyme disease. By the time I was diagnosed, I was very sick; I had severe daily headaches, joint pain, numbness in my feet, insomnia…the list goes on.
This March, it has been 6 years of treatment for Chronic Lyme disease. Ten years of being severely ill. And yes, I have seen improvement. The lasting symptoms that seem to never end are the chronic fatigue, the joint pain, the insomnia, and the memory/processing issues. Considering how long this list was in 2013, I can only be grateful for the progress I have made.
However, this anniversary also reminds me of what I am still struggling to deal with on a daily basis. That’s the part of this that gets me down sometimes. It’s hard not to compare the Before and the Now. And this comparison is only amplified by the years that have gone by.
The lasting and most enduring symptoms of this illness, at least in my case, are the fatigue, the insomnia (it’s so bad right now), the joint pain, and the memory/cognitive issues. Sometimes, it’s tough to see if there is any progress. I feel like these are things my doctors and I have been working on for the past 6 years. While I hope they become less severe, I also simultaneously realize this may be as good as it gets. I’m not sure I am at the acceptance stage in this case.
I hope spring is opening its doors in your world. Here in Houston, we are enjoying the mild temperatures before the real heat begins at the end of this month.
Hi fellow travelers! Just a thought, if you are interested in even more mundane things I focus on, then please follow me on Twitter @readbtwnthelyme
First, let me pre-empt the onslaught of my complaining to say I’m Hella Glad it is Summer! I’m not sure I would be able to semi handle this stupid, horrible rash as such if I were actually working.
So, you may remember this Monster Rash attacking me..YES! Attacking me! in November 2017 with The Damn Rash is Back and again in March 2018 with Rashes, Rashes, We all fall down….. and here we are again. JOY! Now, I did have this similar rash back in April 2016 and June 2016 as well but let’s just keep it as simple as with my muddled brain this is as best I can do right now! Lord!
In June 2016 I was seen by a dermatologist who declared NO SKIN LUPUS and Excema and sent me on my merry way. No FU. Luckily, I thought the worst was over and did not have another incident until November 2017. This incident in November also started on one side of my face, then tops of hands. It stayed fairly contained, and I was able to treat it with topical creams and OTC allergy meds. I thought I was in the clear.
Again, though, things got really messed up in March 2018. For a scintallating read see Rashes, Rashes, We all fall down….. This same rash began again on my face and proceeded to foremarms, stomach, legs…..my LLMD (let’s loosely use that term at this point!) started me on allergy shots and things blew up again. I was in rash mode almost all of March. It was horrible to say the least. The solution at this time according to my LLMD? was that I have allergies, and I needed to try allergy immunotherapy. I trusted my doctor. After the crazy reaction to the FIRST allergy shot, the vials were diluted, I was given another pack of steroids and sent on my way to find a dermatologist. Needless to say, I stopped the shots and I could not find a dermatologist I could get in to see at this point (all were 3-4 week wait) before the rash cleared up.
Look, I knew I was looking for trouble now in retrospect. Not on purpose though. Again, I trusted my LLMD and thought, Well since I’m out of school for summer, Maybe I can try to do the allergy shots again? See how it goes? Let’s just say that I’m a DUMBASS. And also that I have learned my lesson not to ever trust my doctor who is pushing a side scheme to have my best interest at heart. Granted, I’ve had this rash before, before doing any allergy shots, but it is my belief that the shots set it off again on a course that has been a dreadful one.
I began doing these shots at home a few weeks ago. Yes, they sent the vials home with me. Yes, I was administering these myself every 3 days. Now, after seeing an allergist (who was shocked and dismayed that this was happening!) I realize that this was a really bad plan. But honestly, I had no idea. I administered my 3rd shot on Tuesday, June 19th. By Saturday evening, I had one red streak under my left eye. I hoped I was wrong, but withing 24 hours, my entire face was swollen, itchy, my eyes were so swollen, the tops of my hands were itching and the rash was moving up my forearms. The Monster Rash was back!
I arrived Monday morning at my doctor’s office as soon as they opened. After telling my tale of the sequence of events, LLMD? stated that in fact, it could not be a reaction to the allergy shots because there was no way I could/would have a reaction 3-4 days after the injection (again, the allergist didn’t seem convinced). I have no idea. I am not a doctor. I recieved a steroid shot along with a 5 day pack of steroids. I was referred to a dermatoligist – again.
While the steroid shot helped my face a bit, I was beyond miserable. The itching continued to spread. I now had spots on my neck, my shoulders, and my ankles. I saw the dermatoligist I was referred to the very next day. She had no idea why I was there. I just assumed since my LLMD? had sent me to her that communication had taken place, but no. I explained about Lyme, FMS, CFS, about the history of this rash, blah, blah, blah. She looked me over. She said maybe atopical excema? But it isn’t all of the time? Maybe contact dermatitis? But again, no new products? Maybe allergies, but still a strange deal? She told me that I am a complex case. Thanks?!
Dermatologist Diagnosis: I DON’T KNOW. COME BACK IN 2 weeks or 2 months…..!!!??? I was prescribed a much higher dose of steroids for 14 days and prescribed steroid cream for both my face and body.
In the meantime, I had been in contact with my integrative doctor who is located about 4 hours out of town. It was suggested I add a few natural histmine blockers and see an allergist for possible food allergy testing. The days passed, and I was in utter misery. Trying not to itch, trying to have a minute of comfort, trying to figure out what the hell is going on with me? The mega steroids were maybe helping – no new spots – but they also were tearing up my stomach. I kept at it. I finally saw an allergist last Friday.
While the allergist is nice enough, and I am glad to add another decent doctor to my “team”, I honestly don’t know that I am any nearer to figuring out what is causing this rash each time it decides to rear its very ugly head. The allergist also had to have my history, with Lyme becoming a focal point and one for interrogation. That’s never a fun time.
Allergist Diagnosis: Contact dermatitis. Get rid of all products with perfumes. Perfumes and fragrances are what cause 99% of contact dermatitis cases. But doc, I ask, if contact dermatitis then why/how is it all over my face and then also on my legs and arms and…..? Well, doc says, if you are really extra sensitive, it could possibly be spreading without contact at this point. Oh, like a reaction to the orginal spot? Yes? Maybe? I had so many questions but the allergist was done. I was diagnosed and sent off to change out all of my products, to take even more doses of steroids and not much else. Follow-up is in a month assuming no new rash occurs. If it comes back sooner, I go in and we begin allergy testing…….Not sure why we are waiting but……
I would like to say here that I am not trying to discredit any doctors nor say that I know more that they. Obviously, I don’t AT ALL!!! I believe deep down that each doctor is trying to do his or her best. But as a patient with complex and chronic diseases, sometimes I feel like I am just pushed along. I’m sure all of you have felt this before. It sucks.
**And hey, if you are still reading – THANK YOU! I promise, my tirade is almost concluded. 🙂
So here I am, day 11 of The Monster Rash (Season 2, episode 6). The steroids are kicking my ass….more like my stomach and my mood. My face is back to normal (win!) and many of the spots are almost gone. I still have a few places where it itches, mostly in the evenings and early mornings. I’m in the process of changing out all products I use that have fragrances and/or perfumes. The big ones are easy like soap, shampoo, laundry soap. But now I keep running into things like hairspray, dishsoap, shaving cream! It’s all a matter of deducing which possible products might have an ingredient I might be allergic to….OMG. It’s all very overwhelming. And all this ASSUMES it is actually contact dermatitis and not something else.
I see my integrative medicine doctor at the end of July. I wish this doctor was closer. Since being in treatment for Lyme, etc. my IM doctor has helped me the most. She’s never actually seen me with the rash during a visit, but she is leaning towards a possible food allergy and/or Mast Cell Activation Syndrome.
I’m going to do what I can on my end. This includes no allergy shots anymore from my LLMD. It also includes my not putting too much faith into this particular doctor anymore. It is what it is. I doubt I will go back to the dermatoligist again. What would be the point? IDK. I’ll stick to the allergist and see what my IM doctor might have to say about all of this when the times comes.
And of course, I’ll be keeping my fingers crossed The Monster Rash does not return once I finish up the steroids by the end of this week. Please, just no. It’s been exciting and frustrating enough for the time being.
Thanks for listening! I hope that you and yours have a safe and wonderful Independence Day! – b
Hi my people. Yep, I’m missing you too. But, I am struggling with inspiration and with life in general at this point it seems. These past few months have been tough. I know I am being vague in a way, and I am so not trying to be evasive. Overall, it’s been a challenge to keep working. A real challenge. Don’t get me wrong. I love my job. But overall, it has just been a struggle to keep it up while dealing with the chronic fatigue and a myriad of illnesses I contract due to my sucky immune system.
So, yeah, both the emotional and the physical challenges of working a full-time job have pretty much consumed all of my time in recent months. Unfortunately, I am also trying to dig deep to find joy. Even in the little things. I don’t know if it is the time of year or the incessant constant day to day barrage of symptoms, or the trying to escape some of the chronic symptoms that seems to have made me shut-down a little on the inside. I’m trying to figure it out but honestly, I have found even that kind of thinking and reflection just exhausting. IDK.
I just wanted to check in becasue, well, I miss the blogging world and my blogging people. I promise that I am making a concerted effort to get myself back on track and back in the Game so to speak.
I hope this finds you well and full of JOY. Peace. -b
I am sure everybody hits points in their lives when they sit back for a moment and reflect on where they are, what their plans are for the future, how will they get things accomplished, etc. I know I used to do this periodically. Reflection has always been a part of my life. Pre-Lyme disease, I was always positive that the future would always be filled with unending growth and opportunities, both personal and otherwise.
Now? I’m in the midst of trying to treat a real illness, one that has been in my body silently and insidiously taking over. Lyme bacteria – a corkscrew-shaped bacterium called Borrelia burgdorferi – has played the Lyme Long Con with me and hundreds, I mean THOUSANDS, of others. For years and years it has slowly but surely, patiently, illness after illness, entered almost every single system in my body.
But the CDC and IDSA (Infectious Diseases Society of America) panel are also complicit in this LONG CON, the Lyme Lie, the Lyme denial, against all of us. For years, the CDC has claimed that Lyme disease is difficult to contract and easy to treat. Yet, in the past 40+ years, science has confirmed that there are 300+ strains of Borrelia bacteria with Lyme being merely only one of these 100s of strains that are all transmitted by ticks, fleas, and mosquitos worldwide.
This is so ludicris at this point that I honestly don’t understand how the CDC can still be promoting this misinformation. Just a few years ago, the CDC changed its number of newly contracted Lyme infections from 30,000 to 300,000 yearly. Yes, from 30,000 to 300,000!! A YEAR. And many believe that this number is much lower than actual cases each year. 300,000 PER YEAR. Let that sink in. Just to give us some perspective, there are about 50,000 new HIV cases and 200,000 breast cancer cases each year in the US. Yet, almost no money is going into researching Borrelia complex diseases.
I want to scream that BORRELIA INFECTIONs are real. LYME IS REAL. CHRONIC LYME IS REAL. CHRONIC LYME IS HAPPENING TO thousands of PEOPLE, not only in this country but globally as well! As patients, we need to have access to treatment, individualized treatment, treatment that lasts more than a mere 2-4 weeks of antibiotics. You may say, but what the heck does this have to do with your first paragraph. Well, everything, my friends.
Lyme has stopped me, as well as thousands of others, in my path. It has stalled me for awhile, off and on for years, and I unknowingly placed faith in the CDC, the American healthcare system, in my doctors, faith in health insurance companies. I placed my FAITH in these entities sure that they would find out why I was dealing with strange health issues off and on over the span of 3-4 years. They didn’t.
Then, I put faith into the fact that once diagnosed, I would be treated, and I would have a recovery plan. Alas, getting a Lyme diagnosis almost means nothing. The USA has done absolutely nothing to improve research, diagnosis, nor treatment since the disease was discovered (it’s been around for thousands of years) in 1975. Yes, take that in. 1975. We know almost nothing more now than we did then. In the meantime, THOUSANDS of people have gone undiagnosed and untreated. Thousands have been misdiagnosed with MS, Lupus, and ALS, along with other diseases and gone untreated for Borrleia infections. Why??? The treatment for Lyme and other Borrelia infections has not and cannot be easily monetized – YET. So we wait. And 300,000+ and more become infected every single year.
So here I am. Halted. Stopped for much longer than anticipated. Perhaps, stopped here permanently. I know, I know. I need to be positive. I need to buck up. I need to stop focusing on my illness. Most days, I can manage this. But this past month, not so much. Sometimes, we just need to GRIEVE a loss.Sometimes, we need to be ANGRY. Sometimes, we just need to BE.
If you would like more information about Borrelia infections (this includes Lyme bacteria infections) then please watch Under Our Skin. It provides some basic information regarding Lyme disease as well as information about how the CDC and the IDSA are working in tendem, not only to discredit Lyme doctors and patients daily, but on a much larger scale, how these two organizations are undermining the most dangerous health crisis of our time.
Please be careful. LYME IS EVERYWHERE – WORLDWIDE. Take care, my friends – B
** “I have been given this product as part of a product review through theChronic Illness Bloggersnetwork. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.” **
As many of you already know, I am a part of the Chronic Illness Bloggers network. Often, we have the opportunity to review items that can possible assist us with our day to day activities. Being a part of this network has been an excellent way for me to connect with various products that I might otherwise not know about. Before this, I had never heard of the company Honeycolony nor about any of its products. However, now, after using this product for over a month, and getting to know what this company is all about, I am so glad that I tried this product,Equilibrium Energy Superfood.
Before I move ahead with the overall review, first, I would like to share some information about this company, Honeycolony. This company is committed to organic and sustainable products. I scoured through their website, looking at what kind of value system this company presents. And what I found was that this is a company that prioritizes QUALITY as one of its most important components. In fact, Honeycolony promotes itself as “HoneyColony. We do not trade excellence for profit.” Every one of the products I looked over on their website is made from organic and pure elements. The values this company promotes such asholistic healing, medicinal activism, as well as environmental sustainability(especially activism for the preservation of bees), these values also align with my own. So, being exposed to this company, let alone to its products, has been a wonderful experience!
But now, let’s talk about the actual product I was provided to try out. TheEquilibrium Energy Superfood, a 2.3 ounce jar, arrived in my mailbox a little over a month ago. It’s touted to “energize mind, body, and soul.” While I always have interest for any product that can possibly help me in my fight against chronic fatigue, I also have a healthy sense of reality in that many times, I get my hopes up only to be disappointed…yet, again. So this is how I approached my experience with Equilibrium Energy Superfood.
First, I had difficulty reading the label on the jar. Trying to decipher the directions proved impossible even with my reading glasses on (and off). Finally, I just went back to the website for this information. Granted, this is a small jar and bigger print most likely could not be implemented. The website has all of the needed information about Equilibrium Energy Superfood, a detailed list and description of organic ingredients, the suggested dosage, along with the various benefits. Many of the elements included in this product are items I have tried individually throughout my treatment for Chronic Lyme disease such as ginger, Tumeric, and raw honey, just to name a few.
I immediately began with the suggested use of “… a teaspoon a day of this super potent superfood blend, preferably on an empty stomach. However, you can add it to a smoothie and have a teaspoon pre workout. One 12 ounce jar should last you a month with a teaspoon per day. Extremely POTENT.”
Looking at this superfood, it has both the consistency and viscosity of molasses. I expected it to taste pretty terrible. BUT, it tastes just fine! The overwhelming taste is that of honey, and there is no after taste whatsoever. I take it at the beginning of my day, with breakfast. At first, I didn’t really notice any difference at all. Then, I started back to work after my summer break (I am a teacher). And, a few weeks ago, I really started to notice a difference in my morning energy levels. Starting back to work after a couple of months off is difficult, even for a healthy person. I was dreading going back to work because of the daily challenge, especially in the morning, and especially with the fatigue.
Presently, I’ve been back at work for almost a month, and I have been diligently taking myEquilibrium Energy Superfood every morning as a part of my routine, and I am seeing a difference. In the past, by mid-morning, I am spent, and the rest of the day just grinds on. While usingEquilibrium, I’ve been able to get past that mid-morning slump! It has been awesome! I admit, I have tried taking a second teaspoon in the afternoon, but I haven’t seen a result from adding another dose later on. However, I also have not done the afternoon dose on any kind of consistent basis.
Faithfully taking a teaspoon daily since I received the product, I am just now almost out of the product. I am surprised by how long this 2.3 ounce jar has lasted! I do plan on ordering more of this product and keeping it as a part of my regime. Admittedly, the price, $53.95 per 2.3 ounce jar, is high, but not when considering its impact and how long this product lasts (again, I take just a teaspoon or less daily). As a chronic illness patient, and as many of you I’m sure, I have tried ALL kinds of things. Anything and everything within reason to propel me towards feeling even just minutely better and/or more comfortable in my daily life. Is not off the table to try. Without a doubt, I recommend Equilibrium Energy Superfood to you.
I hope this day finds you at a pain-free level and with joy to spare. Peace, my friends. -B
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 becauseI 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.
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
I’ve been fortunate enough to be a part an organization, Chronic Illness Bloggers, for the past 4 months. This has been an absolute great experience. Please help spread the word about my blog in hopes that it helps people protect and promote solid information in regards to Lyme disease. Also, please follow the link below to get to my featured profile and to The Chronic Illness Bloggers Network.
*I wrote this back in July 2015. But all is still relevant, if not more so. When there are over 300,000+ new cases of Lyme a year across our nation, why aren’t the CDC and IDSA doing so much more for the population at large? And why aren’t these organizations being held more accountable for their actions or lack of actions. #LYMELIESCOSTLIVES
Hi out there! Today I listened to the Diane Rehm show and if you caught it as well, it was a program about Lyme disease. Honestly, it didn’t shed any light on the disease for me personally and yet again, some of the guests continued to perpetuate some of the Lyme disease myths floating around. Now granted, I am not a scientist, I am not a researcher, and I am not a doctor. But I am one of the many suffering from this disease so I have read as much information as I can get my hands on about Lyme and I will continue to do so. At this point in my game of Lyme, I feel like I know enough to make fairly decent decisions regarding my own care.
Listening to the program and reading comments on Rehm’s FB page really struck a chord with me in that there are so many people out there suffering from the elusive Lyme bacteria, Borrelia burgdorferi (B. burgdorferi). And so many of us are not even close to getting the help we need. The medical community is at odds as to what to call the condition where patients suffer symptoms of Lyme after treatment; it is also at odds with whether the bacteria is actually present after treatment or not. On the show, Dr. John Aucott from Johns Hopkins Bayview Medical Center basically agree that yes, in rare cases, patients still suffer from symptoms after treatment but he would not call it Chronic Lyme. He sidestepped this so many times…well anyway. Instead, he made it clear that if, and only rarely, patients have lingering issues, it is due to an immune response but not due to persistent bacterial infection. He stated this as a fact when in reality, this has not been proven as not true in a human subject.
But how do we even know or how can we even begin to dismiss the idea that this bacteria, one of the most, if not the most, complex and intelligent bacteria we know of, cannot persist? Just because we do not have the means or the way to find out should not lead then to dismissal. I think back to things in the past that were dismissed and then later, after the technology and testing and imaging came to pass, after the WAY to see something became clear, we changed our minds because we actually had the TOOLS to figure it out? Now I am not necessarily trying to make direct analogies here but think about this: women used to be treated as mentally ill if they suffered certain symptoms after delivering a child. Ever read “The Yellow Wallpaper” by Charlotte Perkins Gillman? But then as years went on and doctors focused and researched, this “condition” turned out to be a physical one and not merely a “mental” condition we now call postpartum depression. The same comparison be said about depression in general. We didn’t know what it was, we know now, we know it can be hereditary….and on and on.
I just cannot then figure out why the medical community, in this country for sure, is so fixated on sticking to standards set by IDSA, the Infectious Disease Society of America, in 2006. Like many of us, I wonder why more money has not been put into finding out so much more about a disease that is now affecting 300,000 plus here in the states? I just cannot wrap my head around it!
I know I live in a bubble, don’t get me wrong. I have yet to have anyone in my life doubt that I am still suffering from something, no matter what the terminology. Not everyone has that kind of support system. Why don’t more medical and science professionals care about Lyme? Or why are they staying away from researching Lyme? Let’s just say that the radio show today did not answer any questions for me. In fact, it only made me think about more questions I have about Lyme disease! On that note, dearies, I must take leave of you.
Hi out there! I wrestled with writing two paragraphs about how work is going and then, bam, they were gone. Since I cant muster anymore energy, it will have to wait. Maybe the disappearing text is reflective of my segue back into work? LOL
More to come on how work is going. Right now my Lyme brain cannot do anymore, so I bid you all a goodnight. Peace, my peeps – B