When Life gives you Lymes

IMG_8729.JPG

When Life gives you Lymes

Before I got Lyme disease and co-infections Ehrlichiosis + Anaplasmosis, I had zero knowledge about it.

Since May is Lyme disease awareness month and I know so many other photographers and outdoorsy people, I figured I would open up on my experience and help educate on prevention and the disease itself.

Having a Chronic Illness is so challenging in the sense of that you want so badly to remain a happy, bubbly person on the outside, but some days you are just dying on the inside. That alone is exhausting.

This Disease is on the rise, but you don’t hear much about it. Since I opened up and posted about it on social media, I have had countless messages, voice texts, texts, DM’s about their story or that they are suffering from this Chronic Illness as well, or they know someone who is, or they were misdiagnosed for years. It is amazing the amount of people that have this disease and it is only going to continue to go up. Especially if we don’t raise awareness and protect ourselves.

My facts:

  • I never found an embedded tick on me - just one crawling on me

  • I never had a bulls-eye rash, fever, headache, or chills right away which are the “common” symptoms

  • I have tested negative for Lyme Disease multiple times

  • I found out right away that I had Ehrlichiosis + Anaplasmosis, but it took me a year to get my Lyme diagnosis (for many people it can take much longer)

  • I was told it was in my head, anxiety, or that I was hypersensitive to my body

  • The main Symptoms I have had this past year:

    • Chronic fatigue

    • malaise

    • heart palpitations

    • chest pain

    • thrombocytopenia

    • petechiae

    • low potassium

    • vertigo

    • lightheadedness

    • pre-syncope

    • SOB

    • joint pain

    • numbness/tingling - my limbs fall asleep easily

    • muscle fatigue

    • muscle spasms

    • muscle weakness

    • brain fog

    • light + sound sensitivity

    • weakened immune system

    • hands would randomly lose grip of things I was holding

    • general weakness

    • Insomnia

    • mood swings, etc.

      *many other little things, but these have been the most persistent*

      Lifestyle changes I have to make:

  • no alcohol

  • no coffee

  • no sugar

  • no gluten

  • no dairy

  • no soy

  • limited time in sun

  • A timed and scheduled treatment plan with multiple medications/herbs/supplements/treatments

You HAVE to be your own advocate for your health.

I have gone to the doctor every month since last summer, and was always leaving with no further answers. I left several times with the answer: “Maybe it’s just in your head” or “You are just hypersensitive to your body” or I would just be prescribed an anti-anxiety or anti-depression medications none of which I started because I knew in my heart that is not what I needed and there was a deeper issue going on here.  After many tests that kept coming back normal, I finally went out of network to a specialty clinic in Milwaukee, WI to a LLD (Lyme Literate Doctor) and I have never felt more heard. I had never had a doctor look me in the eyes and tell me “YOU ARE NOT CRAZY” and let me tell you, that was the most relieving thing to hear. Because many patients are actually sent to Psychologists.

You HAVE to be your own advocate for your health.


What I have either been misdiagnosed with or doctors thought I may have had:

  • Auto-immune diseases

  • MS

  • fibromyalgia

  • -Autonomic dysfunctions/POTS

  • -Mono

  • - general fatigue

  • -anxiety, depression- that is was all just in my head.  (it is SCARY how much they push anti-anxiety/anti-depressant medications on someone who that is not the issue of what is going on) (PS, the WORST thing you could say to someone with a Chronic Illness is “Are you sure it’s not in your head?) I have quickly learned this and now know to be much more sensitive to people when they are not feeling well.

  • -Thyroid issues


Lyme Disease can be known as the “Great Imitator” because it can mimic so many other illnesses such as:

  • MS

  • ALS

  • Alzheimer’s

  • Rheumatoid Arthritis

  • Chronic Fatigue Syndrome

  • Parkinson’s Disease, etc.

  • Mono

  • Crohn’s Disease




My experience with Lyme + co-infections has absolutely changed my personality at times which is so frustrating when I just want to be my normal outgoing/bubbly self. I have always been an active person too, so having it limit what I can physically do has been debilitating at times.

IMG_8726.JPG

Prevention tips:

  1. Spray your clothing with permethrin *before* you wear them - permethrin cannot get on your skin. DEET spray won’t really protect against ticks, which is why you should wear clothing that covers as much skin as possible especially on the lower half of your body.

  2. If you have been outside, throw your clothes into the dryer on high heat as soon as you come inside. Ticks will die in the high heat

  3. Check your pets before they come into your house or in your car. If you have them on a flea + tick prevention medication, the ticks will fall off of them and find the closest host to attach onto which is you

  4. Check for ticks 365 days of the year - on yourself, children, and your pets

  5. Wear enclosed shoes, long pants and a long-sleeved shirt - cover your skin. Tuck pant legs into socks or boots and shirt into pants to prevent ticks from crawling to a warm place.

  6. Try to stay on paved trails and away from branches - Ticks cannot jump or fly. They hang on branches or grass with their legs out ready to find a host to attach onto.

  7. Avoid wooded and brushy area with high grass and leaves



Facts:

  1. Lyme Disease has been found in every state in the U.S. except Hawaii

  2. Lyme Disease is known to be mistaken for ALS, MS, Fibromyalgia, Alzheimer’s, and other illnesses.

  3. 28 days of an antibiotic is NOT enough for treatment

  4. Lyme Disease can be sexually transmitted and also passed onto baby through pregnancy

  5. Ticks do not die over the winter

  6. Ticks can be the size of a pencil tip or poppy seed or the period at the end of a sentence.

  7. Standard Lyme Disease testing is less than 50% accurate

  8. Lyme Disease can be carried and transmitted by fleas, mosquitoes, and mites

  9. It can affect fertility and you also cannot get pregnant on treatment or while you are infected with the disease

  10. Lyme Disease has 3 main things it affects:

    • Heart - which explains the heart palpitations, SOB, and chest pain

    • Brain - which explains the forgetfulness / word search

    • Neurological - which explains the muscle numbness, weakness, and fatigue

  11. Many doctors do not believe in Lyme Disease - which is why I finally had to go to a specialty clinic to get the answers and treatment I needed

  12. By 2020, it is said there will be a new type of tick disease that is non-curable



How to remove a tick:

  • Use pointy tweezers

  • Disinfect the tweezers with rubbing alcohol

  • Grab the tick close to the skin and use a slow, steady motion to pull the tick out

  • Disinfect the tweezers again

  • Keep an eye on the bite area

  • Keep the tick in a baggy to send in for testing especially if you start getting sick, it is easier to test the tick than you

I hope this can help at least one person know how severe this disease can be and be more aware of prevention.

Prevention is far less expensive and time consuming than treatment.