Imagine A Life with Lyme

Story by Anonymous:

If you don’t know much about Lyme disease, let me provide an analogy that a friend of mine used:  It is like a python squeezing out everything about you. And you just can’t get out of the misery because you are constricted by the python.

Imagine the worst day of your life. What happened?  Now imagine the time you were the sickest you have ever been. Was it the flu? Picture yourself having the worst hangover of your life. Imagine the time you were in the most emotional pain. Visualize losing almost everything you love about yourself and your life. Oh, remember to visualize losing friends because either they don’t understand what’s going on and/or you are too sick to see them. Picture loved ones telling you it’s in your head when two psychiatrists and 5 other doctors tell your family that it’s not in your head, and they are AT the doctor appointments and hear this information.  These psychiatrists and the other 5 doctors tell your loved ones the only thing in your head are the “bugs,” so to speak, from Lyme disease and co-infections. Imagine feeling completely alone, hopeless and helpless. Picture yourself literally praying not to wake up the next morning because Lyme and co-infections are so terribly miserable.  Remember to mix in that you don’t just have zero quality of life; you are just existing in pain and misery. NOW: Combine all of these things together and multiply them by infinitely.  And I’m not being dramatic in the least bit.

FOR REAL! Please take time and close your eyes and imagine this for at least five minutes.

You now have only a *glimpse* into the life of Lyme disease and co-infections.

I have Lyme Disease, Bartonella, and Babesiosis.

Unfortunately, Lyme and tick-borne co-infections have ravaged my life. I went for ten years being misdiagnosed with everything under the sun as Lyme moved around my body attacking different organs. Treatments for my misdiagnoses failed, and I kept getting sicker. In the meantime, people said I was a hypochondriac because I kept getting misdiagnosed and the treatments for the misdiagnoses failed. I needed support then, and I didn’t have it.

It took at minimum of about 30 doctors, probably more like 50, for me to finally receive the proper diagnoses of Lyme Disease, Bartonella, and Babesiosis.

Lyme and co-infections have robbed me of the life I once knew. Always vibrant, positive, “the life of the party,” and highly successful, I found myself getting sicker and sicker as life as I knew it was ripped away, piece by piece. It’s been devastating:  Physically, emotionally and financially.

I suffered needlessly for these ten years and continue to suffer due to lack of proper knowledge from many well-intentioned doctors, along with a medical controversy I will address farther down in this post.

In February 2015, I found out I have Lyme Disease. I started IV Rocephin via PICC line. I then changed to a different Lyme literate doctor and have been on an aggressive treatment regimen since September 2015. Antibiotics, PICC line for Iv antibiotic infusion, oral antibiotics, and malaria-like prescriptions because babesiosis is a malaria-like illness.

I am slowly beginning to put the pieces of my life back together as I have begun to heal only due to this aggressive long-term antibiotic, antimalarial, etc. treatment regimen. I still have a long way to go, and fighting for so long and so hard is exhausting in every sense you can think of.

If I would have had access to doctors who had proper knowledge, Lyme Disease and co-infections could have been caught sooner. I could have received treatment sooner. I could have forgone years of needless suffering and not progress to the level of illness that I am at now:  Mid to late stage Neurological Lyme.

To compound the situation, there is a huge medical controversy regarding Lyme disease. Lyme is not just a medical disease, it is a political and economic disease:

Two very different medical ideologies and groups are “at war.”  CDC and IDSA claim chronic Lyme doesn’t exist and limit treatment options, which results in many not having Lyme disease covered by insurance. Many people lose their homes, jobs, and go bankrupt.

ILADS (International Lyme and Associated Diseases Society) guidelines have a plethora of scientifically peer-reviewed evidence that PROVES chronic Lyme exist and offers guidelines that help patients heal if they are too far along (major late stage). Did I mention you can die from Lyme disease????

IDSA was involved in an anti-trust investigation because many of the members that create the guidelines that are harmful for people with chronic Lyme have monetary conflicts of interest with insurance companies and the harmful Lyme vaccine (which can actually spur Lyme disease). Since the government is far more powerful than the organization,  ILADS, they are able to put out false information, such as chronic Lyme doesn’t exist, in mass media. They also miseducate doctors and say chronic Lyme doesn’t exist. It is a travesty, to say the least.

I hope I am one of the lucky ones who can recover from mid to late stage Neurological Lyme Disease. I hope I can fully recover all of the life I knew and had prior to these devastating illnesses.

Most of all, I hope for four things:

1. No one has to go through what I’ve been through and that people are spared this pain.
2.  I hope doctors become properly educated so that they can recognize and treat Lyme Disease and other tick borne illnesses early.
3. The truth that chronic Lyme does exist is put out in mass media and doctors are educated properly.
4. People receive proper treatment.

It would also be nice to become well again. 🙂

Image from video: https://www.youtube.com/watch?v=HXTPNvrAyUw

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