After years of debilitating symptoms, pointless Doctor visits, thousands of dollars in co-pays & out-of-pocket expenses and "normal" testing I finally received a diagnosis of MSIDS- Multiple Systemic Infectious Disease Syndrome in September of 2017. This diagnosis included Chronic Lyme Disease, Heavy Metal Toxicity, Mold Toxicity, Anemia, Low Progesterone on top of the years of other diagnosis. I am sharing my symptoms in hopes that others with no answers keep fighting for a diagnosis and treatment plan.
I have a support system that is always asking what they can do to help. I have a hard time accepting help but I created a post of 50 Thoughtful Gifts Ideas for a Loved One with a Chronic Illness. May is Lyme Disease Awareness Month, please share!
Here is what it feels like to have Lyme Disease
Imagine the worst flu you ever had never went away
Then Imagine trying to get out of bed and feeling like you are buried in sand
Image a time when you twisted your ankle or broke a bone and you couldn't move without pain
Imagine not sleeping for days
Imagine trying to call out your child's name to only struggle to find it on the tip of your tongue
Imagine dropping things repeatedly for no reason
Imagine loosing your keys every day
Imagine a constant ringing in your ears
Imagine your fingernails are have hard grooves, break and split constantly
Imagine you get tremors for no apparent reason
Imagine tingling and numbness in your hands & feet
Imagine your elbows hurt so bad you cant rest your arms on any surface
Imagine the rain makes your pain worse
Imagine having irregular periods sometimes 2 a month
Imagine asking your Dr. about your mood swings and PMS to be told "you're just getting older"
Imagine your hair falls out in gobs every day
Imagine an overwhelming feeling of darkness or fear out of the blue
Imagine an onset of an anxiety attack in a split second
Imagine you have to reset your passwords everyday because you can't remember them
Imagine feeling like you are going to pass out when you stand up
Imagine going to Dr. after Dr. to have no one believe you
Imagine your lab work was "normal" despite the report saying otherwise
Imagine being sent home from the ER because the Dr. just can't figure it out
Imagine being told all of your symptoms are just from "stress"
Imagine being put on dozens of medication that are not helping and in actuality hurting your body
Imagine that there are over 300,000 reported cases and you are NOT one of them because of inaccurate testing
Imagine you live in a Lyme Disease area but there is only 1 Lyme Literate Doctor within 5 hours that takes your insurance.
Imagine you have to pay thousands of dollars out-of-pocket for testing to prove you are sick
Imagine the looks of confusion when you explain to everyone what a Functional Medicine Dr is
Imagine feeling like a failing mom because you are to ill to play with your child
Imagine you take your dogs to the vet and they are diagnosed with Lyme Disease
Imagine your pet has better access to reliable testing and treatment for Lyme Disease
Imagine you have to stop working a carer you love
Imagine you can't work but do not qualify for Disability
Imagine your family and friends thinking you just are lazy and exaggerating your symptoms
Imagine disappearing from your old life because you can't leave your house
Imagine that you have genetic issues keeping your body from recognizing and fighting a Disease
Image that you never had the typical CDC symptoms
Imagine that there are dozens of co-infections terrorizing your body
Imagine that there are so many misconceptions of Lyme Disease you are left to be your own Dr.
Image you were misdiagnosed for years and now you have Chronic Lyme Disease
Imagine that there is no 'cure' and you feel left to DIE
Now Imagine how many times I was frustrated for misspelling words and how many breaks I had to take because my hands cramped up in pain while trying to share my story...It is ok because so many people are MISDIAGNOSED and also suffer from LYME DISEASE.
Recently the CDC changed their website definition of Lyme Disease to state, "Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods. Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well."
One of my favorite books is Dr. Horowitz Why Can't I Get Better?
and it is currently FREE with a Amazon audible Free Trial.
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