Hello again! Did you miss me? I have been quite busy living everyone else’s lives for them LOL. I have been taking care of other people’s houses, pools, pets and kids. I could only do this because I have been living the Lyme Dream known as remission for about 2 weeks. Hopefully, the Lyme Nightmare will stay away for a while longer. But, in the meantime, I have been reading and hearing about more Lyme Disease (LD) horror stories. I have also heard of some more dumb-ass doctor moves, so I am finally writing the blog on body parts that I promised I would. Hopefully, this blog can give you some good information to help you recognize Lyme danger signs and advocate for yourself or help someone you love! (I published a comprehensive narrated video power point that you should view if you have /have had/suspect Lyme in you or your loved one.)
https://madlymies.com/resources/ OR https://www.youtube.com/channel/UC_Pu9kTuDyQcooln_wxlP5w
They say Lyme is the great imitator because it can look like so many other fun diseases. I am not the only Lymie out there that has had a million other diagnoses before we figured out my Lyme was directing the show! LD comes from the Burgdaferi (and other newly discovered) bacteria. This little bastard bacterium has a lot of weapons in his arsenal that allow him to travel throughout your body and wreak havoc. He is like a shape shifter from a freaking video game. He can look like corkscrew pasta and burrow anywhere in your body, including your brain. He has a L-form with no walls that allows him to hide inside your cells and even evade your immune system. He can even form a protective cyst and decide to hang out in a biofilm with his worm buddies and wait until the coast is clear. Just when you are feeling great and can FINALLY go off your gazillion meds, the cysts decide it is safe to come out and play again. On top of that, your body is like a damn nursery with all the different life stages of Lyme incubating in there!
This is why some Lymies discuss remission-that blissful spell where your body has beaten off some stages and forms and the little cysts are in a coma. But this also explains how Lyme (and coinfections) can put you and your body through such hell. It would be impossible to discuss all body parts in depth in one blog, especially since every Lymie has a unique Lyme cocktail brewing inside their body at any given time, but I will try my best. I feel it important to note here that there are many other coinfections https://madlymies.com/wtf-is-happening-in-my-body/ that could be causing system-wide issues as well. I will be blogging and posting pictures etc. about these hideous coinfections soon. They are rampant. In fact, a guy just passed out in my husband’s golf league this week from Ehrlichiosis!
Starting at the top, your head is a breeding ground for Lyme bacteria, especially when it burrows through the blood-brain barrier. There are physical and psychological symptoms and diagnoses that could alert you to possible Lyme Disease (LD). Cognitive impairments include short term and some long-term memory loss, disorientation, inability to concentrate, word-recall issues, issues with reading and writing and absorbing information as well, thinking and processing speed slow-downs, attention span of a gnat, and confusion. I literally have driven on the WRONG side of the road and forgot my social security number. I spend half my life looking for shit I put SOMEWHERE!!! Physically, LD can cause facial numbness (Bell’s Palsy) or twitching; severe headaches or migraines; buzzing, ringing, pain and blocking of ears; double or blurry vision, floaters, eye pain or burning and conjunctivitis. You can also have sensitivity to both sound and light. On bad days, I need sunglasses even if it is cloudy. Lyme can cause Dyspraxia and throat issues as some singers have shared. Psychologically, LD can cause depression, Lyme Rage (it IS a thing), mood swings and irritability, lethargy, and a disconnected feeling of living outside yourself. Believe it or not, the head symptom that made me lose my junk was hair loss. I wanted to throw my brush through the window. Jessie’s panic attacks were her worse problem.
Imagine we are traveling down your body cephalocaudally-head to toe. LD can LITERALLY be a real pain in your neck, as well as causing stiffness and weird cracking noises. You can have intermittent sore throats and swollen glands and lymph nodes as well as tooth and jaw pain or TMJ. Thinking Proximodistally, or center to edges in my big Dr. D-sounding words LOL, LD can create all kinds of ridiculousness. When the bacterium travel to your heart, they can cause serious complications like Lyme Carditis, or heart murmurs, blocks, palpitations or valve issues. You can also experience Postural Orthotic Tachycardia Syndrome (POTS), the reason I had to quit my dance lessons I loved. Sore ribs, random chest or breast pains or milk production, stiffness of joints or back, and muscle pains in shoulders and arms are other symptoms that occur in this region. Hypothyroidism, or Hashimoto’s is another common diagnosis than can be a warning sign of LD-especially if you don’t respond to medications.
Continuing along this route, LD can cause lots of stomach and digestive issues. People with LD are often diagnosed with Irritable Bowel Syndrome (IBS), and Gastro Esophageal Reflux Disease (GERD). I ended up with Barrett’s Esophagus-fun precancer shit! LD can cause random food intolerances, nausea or stomach pains, pelvic or testicular pain, bladder and bowel issues, sexual dysfunction, and menstrual problems including Polycystic Ovarian Syndrome (POS). Sadly, research is showing that LD can also cause miscarriages and children can be born with LD. LD can also cause sudden, unexplained rapid weight gain, or conversely, weight loss in less people. People say your immune system is in your gut, so I will include it here. LD can literally HIJACK your immune system. By the time I was diagnosed, I basically had no IGG in any subclass. I now do weekly infusions to borrow others’ immune systems. Maybe I am stealing LOL as I can’t really return it, now can I? You can see Jessica’s related blog on Gluten and her related skin issues for more on diet issues. https://madlymies.com/2018/05/27/you-want-me-to-never-eat-donuts-again/
The peripheral nervous system can be affected as well with LD. Lymies experience a LOT of nerve issues such as random shooting pains in muscles, tendons and joints or burning sensations throughout the body. You can have tremors, numbness and tingling throughout the body as well, especially in the hands and feet. Balance issues such as vertigo also occur causing some LD cases to resemble early Parkinson’s Disease. LD can cause bone pain and weird bone-growth making Arthritis a common associated diagnosis. The joint pain associated with LD can travel around smaller joints and be recurring in larger joints, especially the knees. One day you are fine, and the next day you can’t walk-crazy shit. Edema and water retention can occur, often causing a feeling that your skin is too tight, especially in the hands and fingers. I can feel like I am tipping over and grab the nearest thing to hold on to when I am not really moving. Sometimes, Jess and I get an “electric” feeling-which may also be related to Bartonella. I often must let go of my grocery store cart due to this. I must be fun to watch LOL! You can see photos of our lame Lyme-body issues at https://madlymies.com/wtf-is-happening-in-my-body/.
There are some other fun, whole body issues that I am not sure where to include so I will put here. People with LD can experience increased motion sickness or inability to hold alcohol or exaggerated hangovers much to Jess’ chagrin. We Lymies can make cheap dates but our medical expenses will break you LOL. LD can also create adrenal fatigue, lightheadedness or wooziness or debilitating whole-body fatigue creating an immediate, UNAVOIDABLE need to sit or lay down. You can experience shortness of breath and reduced stamina, and shaky, low-sugar type feelings with any activity or little to no exertion. The fevers that reoccur with chills, low body temperatures and sweats and flushing skin can often make doctors think Menopause. Not sure how this works with guys LOL. I would often be SOOO cold that I would need to stand in the shower with the water on hot (which would weirdly feel cold to my skin) to eventually warm up.
Insomnia is another debilitating and common LD symptom. Imagine being exhausted on a cellular level yet being unable to fall asleep or stay asleep. I think this must be part of the bacteria’s defense system as you need rest to recover…..UGH!!!! And speaking of whole body stuff, your skin can also be impacted by LD. Often Lymies complain-yes-we do complain sometimes….wouldn’t you-of burning and tingling skin. We often experience a sensation of hypersensitive skin where any light touch can feel like sandpaper rubbing against it. Sometimes, it can literally hurt to wear clothes. And then there are rashes and skin issues such as yeast infections, Eczema or Acrodermatitis Chronica Atrophicans (look-I don’t make up these names) or ACA. ACA was thought to be specifically a European LD issue, but cases are showing up in the US.
So, if you are not scared yet, the growing body of research related to LD being a possible causal or actual condition in some big-name diseases will terrify you. As I noted, LD resembles many other diseases due to its symptoms. Besides those I already mentioned, LD can be mistaken for Chronic Fatigue Syndrome or Fibromyalgia, Lupus, MONO, ADHD, Alzheimer’s (see Kris Kristofferson’s story), Lou Gehrig’s Disease, anxiety and mood disorders, cancers, Multiple Sclerosis, and Epilepsy. Recent autopsies from Lewy Body, MS and Glioblastoma patients revealed Lyme bacteria encased in parasitic worms in their brains.
(http://outbreaknewstoday.com/lyme-discovery-borrelia-bacteria-hides-inside-parasitic-worms-causing-chronic-brain-diseases-13216/) We are discovering that mothers with LD can give birth to infected children whose profiles resemble those of children on the Autism spectrum including Pervasive Developmental Disorders. I wonder if this could be part of the reason the Autism numbers have risen so sharply? Someone should study the apparent correlation between the rise in both Autism and LD cases. What if antibiotics could help these children who present with so many Lyme-like issues?
Well, guess that is it for this rambling blog. Keep in mind that most bastard ticks carry more than just Lyme. This means that you could be experiencing other symptoms not listed or have other misdiagnoses. Hard to imagine, right?! I will be blogging about those coinfections and sharing my experiences with Babesia, Bartonella, Rickettsia, and parasites. Please feel free to comment on this and share your experiences or just share this information so we can help people together! I am only one voice and I need your help to be many voices. It takes a squeaky wheel to get the grease and get legislators and doctors to fund more research and treat patients compassionately and appropriately. You can watch and laugh (https://madlymies.com/2018/06/19/mad-lymie-disses-dumb-as-doctors/) or read about how lame some doctors and lawmakers are (https://madlymies.com/2018/06/09/local-docs-say-lyme-literate-docs-are-lunatics-this-mad-lymie-calls-bullsh/) if you missed my video or blog! PLEASE JOIN OUR EMAIL LIST BY CLICKING HERE TO STAY INFORMES AND JOIN THE FIGHT! Click the pink FOLLOW box. 😊