So what is Lyme disease? A tick-borne illness spread through the bite of a tick that is carrying a bacteria that can cause some serious damage.
If the tick bite is found early, most never have to worry about damage long-term. The problem is that some of the most dangerous ticks are as small as this o … that is right, that small. They are called nymphs —not the sweet little fairy nymphs— but ticks so small it is very easy to miss their dangerous bite. The Heal Hive has a handy staging process to help you understand tick-borne illnesses and the damage Lyme disease and accompanying co-infections can inflict.
You see the tick. It is crawling on you but hasn’t bitten you.
Always be tick aware. You are safe, but in an endemic area. Take precautions and tick check nightly.
You got bitten. Tick borne illness just got real.
You may have caught it on you, or you may have not and only notice a rash. Some people never get a rash, others get a rash that looks more like a bruise. What can you do? Safely pull off the tick. Put the tick in a plastic bag and send off to www.TickReport.com —check off the full panel with all co-infections. Remember ticks are infamous for Lyme Disease, but they can also carry dozens of debilitating and potentially dangerous viruses and other bacteria. Watch yourself for flu-like symptoms, headaches, chills, fevers, and joint pain.
If you didn’t save the tick, The Heal Hive recommends a minimum of 20 days of doxycycline antibiotics prescribed by your doctor. Those who are immune compromised like children, seniors, and those with auto-immune disease might want to be more cautious and complete a 30 day cycle of antibiotics.
Your Tick has come back positive for something nasty.
If your tick report has come back positive, and you are currently on preventative-antibiotics, many Lyme-literarate doctors would recommend extending your preventative dose to 4 - 6 weeks. If your tick report comes back and you have a viral co-infection you will need to discuss measures to treat the viruse(s) as well.
The Heal Hive recommends consuming an organic fiber-rich diet free of gluten, dairy, and inflammatory oils during this time period. We also recommend loading up on homemade and store-bought ferments and probiotics. Keep that gut healthy while you tackle the infection. Now is no time for a pity party —you are a lucky one to have caught the bugger. Bravo for being tick aware!
You never found the tick, but something isn’t feeling right.
You are a positive, energetic person who has no trouble getting to school or work. But suddenly something shifts. You get horrible neck pain or headaches you never experienced before. If you can muster the energy to work out you have to take a nap right after. You loose the enthusiasm to socialize because it is just so tiring. You are starting to feel old, but you didn’t feel this old a few weeks or months ago. You may experience mood swings or depression for the first time. You might have your first panic attack or have a hard time getting to sleep. Something is definitely wrong but you seem fine on the outside.
Now is the time to get checked for tick-borne illness. But hold on, there is a big problem, these tests through your doctor aren’t very reliable. What’s that? You hear the ELISA test, the one your doctor will most likely administer, is reliable less then 50% of the time —hmm, those aren’t great odds. So lets say your ELISA test came back negative but you feeling worse. Now is the time for a Western Blot test. But the test results came back and the doctor says you still don’t have Lyme?
The Heal Hive recommends the private and reliable laboratory testing of IgeneX out of Palo Alto. They are able to find Lyme that both ELISA and Western Blot test miss.
You have Lyme disease and maybe even one or more co-infections.
Maybe it took a month or maybe it took a year to get diagnosed. The struggle is real but yet you still manage to make it to work and to see friends. Perhaps you are on oral and IV antibiotics or anti-virals. Potentially you are taking herbal protools. None of this is fun but yet you look great on the outside —you might have even lost some weight and people are complimenting you.
So far you don’t have digestive distress or food allergies. You are still pooping normally and able to go on vacation and hang with friends. But yet you have no enthusiasm to do any of fun stuff.
Life generally sucks.
Nothing is working and you are getting scared.
The prescriptions didn’t work, the supplements are getting really expensive, you may have started outlying serious cash to try to feel better. Getting to work is harder if not impossible some days. Taking care of the kids is torture and you have no qualms about staying in the same yoga clothes for days at at time. Blowdrying your hair went out the window back at Stage 4, but now at Stage 5 you go days without washing it. Foods you normally love like peanut butter and cheese are causing you to have joint pain or get really bloated.
You are dipping your toes into the quagmire of med clinics, supplemental IV therapy, maybe even dabbling in a session in a hyperbaric oxygen chamber. Nothing is working and you are getting increasingly desperate. Who knows what is happening to your friends, you have new friends anyway, a lot of strangers who commiserate on how you are feeling. They get you, the problem is, they aren’t getting better either. Some claim they are but a month later they are ending up in the hospital.
This is getting scary and expensive.
The doctors are on speed dial but wait —what are their names?
You were scared before but now you are just confused. Whatever anger you felt, whatever disappointment you having from missing out is replaced by such debilitating brain fog work is near impossible. You grab your keys to head out the door but don’t make it to the store because you don’t feel safe driving. Is this what dementia feels like?
Your joint pain might be tearing through your body, some nights you can actually feel these bugs moving around. At this stage you are being told its parasites, or mold, or heavy metal poisoning. What is that? There are a lot of new words to learn and none of them make sense. You just want to sleep all day long —and all night long. But when night falls you are wide awake in some sorta of nightmare-awake state. Depression sets in and you feel all alone. Loved ones are no help and you are just angry at them anyway. No one understands what you are going through except these strangers online.
You are too tired to cook. You are constantly thirsty but all you do is drink water. You stop eating but yet gain weight. You eat everything, but yet lose weight. The doctor tells you your thyroid isn’t working, you tell them, “nothing is working”.
You start passing out, sometimes randomly, sometimes when standing up. Your heart races. Sometimes you feel life isn’t worth living.
Desperate Times = Desperate Measures
Eating is becoming tough —you seem to react badly to almost all the food you eat. Breakfast seems like a thing of the past —coffee and eggs? As if.
Doctors start to test you for autoimmune diseases. You hear the words POTS (postural orthostatic tachycardia syndrome), MCAS (mast cell activation syndrome), Hashimoto’s (thyroid autoimmunity), IBS (irritable bowel syndrome), MACRONS (multiple antibiotic resistant coagulase negative staphylococcus bacteria), EBV (epstein bar virus) and others bandied about —you are tested for all of them.
To your surprise you have mold poisoning, but why are you the only one in your household affected? Your heavy metal tests come back —you never eat tuna but yet you have high mercury levels. What is going on? You get put on more IV antibiotics, you start to have severe seizures that land you in the hospital.
The deep depression sinks in. The torch of hope you were holding feels very heavy. On those sleepless nights laying alone in your bed, you sometimes think it would be easier to just die then to suffer through this chronic illness one more day.
The Daily Hell
You start a GoFundMe.
It’s confirmed you officially have POTS, MARCONS, Sjogrens Syndrome, Ehler Danlos syndrome, Mold poisoning, and they think maybe Lupus. You feel relief to have names for these conditions but wait, how much worse is it going get? You pour over every medical journal trying trying to find out how to stop this autoimmune cascade but still, the origination of symptoms comes back to Lyme.
The doctors test you for Lyme to rule out the infection. Great news! Your new blood test say you’re free of Lyme, but now have 10 million other diseases.
You have given up on getting out of bed. You have moved back in with your parents. Your husband is now sole breadwinner and house maker, this would bother you normally but you are mostly too tired to care.
You hope and pray something will work. You consider stem cell therapy, flying to Germany to have your blood boiled or frozen, you pray for a miracle.
You stop wanting to die because that takes too much effort.
You are 20 going on 80
The GoFundMe was going strong but now it seems everyone’s cousin has debilitating Lyme.
Before you had 50 supplements to take everyday, but now you have 50 new prescription drugs to handle your new diagnoses. You were considering going to Germany or getting stem cells, but you are now too broke for that. You have given up on all the Lyme doctors as they are too expensive and they all say the same thing.
You have renewed hope. You have survived the last year or years and are still standing. You have found new friends online who share your same dreams to be free of tick-borne illness. Despite the fatigue and pain you learn how to manage getting as much life out of the day that you can. You learn what foods won’t make you sick and you learn that coffee enemas are the next best thing to a latte from Starbucks. You are learning about your body and your diseases. You are empowering yourself to win this battle. You finally allow yourself to acknowledge what we have always know about you, you are a warrior.
The New Normal
No day is the same and even a trip to the doctors office can cause you to be bedridden for days. You may use a wheelchair all day or only sometimes. You stopped traveling, except to new doctors, a long time ago. You have picked up new hobbies you can do from bed that don’t take up that much mental energy.
You stopped taking so many supplements —what do they really do anyway? You manage your pain with prescription and natural remedies.
You search for answers. You never stop searching.