So i have Lyme's disease, but rather than having to tell the story 100 times i will write it here and you can all read it if you want.
Timeline
1988 I was born
2000-2005 at some point in these years i got bit by a tick that was the size of a poppy seed.
2005 - I stopped taking minocyclene a common antibiotic to help fight acne. (This will be important later)
I stopped playing football and track.
Late 2005ish - I started to have minor pain, but nothing serious.
2007 - Left to serve a Mormon mission in Hawaii.
2008 - My pain becomes much more severe. Each day i would wake up and take 2 Tylenol, 2 Alive, and 4 Advil. That would bring the pain from an 8 to a 7.75. I would take 2 more Tylenol and 4 more Advil at lunch and at dinner. A doctor from home then sent me Flexril (a non-addictive muscle relaxer) and that brought the pain from 8 to 6, but made me extremely tired!
2009 - I finished my mission and came home.
2010 - I went to Dr Mathews in Orem, Utah. He was a Rhumatologist. He tested me for many things, including Lymes disease (ill get back to this), but in the end found nothing physically wrong and told me i had fibromyalgia. I was put on Flexril, Gabapentin, and Prozac all to help with the pain.
Around this time i noticed my heart rate was 110 resting and 140 and up when moving (not running, etc). So i was sent off to specialists.
I then went to 2 cardiologist, 1 endocrinologist, 1 nephrologist, and 2 neurologists all for further tests to see if my high blood pressure, and high heart rate could be linked to or causing the pain. They all found nothing significant. The cardiologists added Atenolol, but then was switched to Cardizam. They also added prevacid and zantac as well.
2011 - No changed in symptoms, pain is steady around 7 peaking to a 8.5 in the evenings. No days are pain free and if my pain is at a 5 or 6 that is a good hour, but it never stays there.
I get in with the top Fibromyalgia doctor in Utah and she is utterly useless. I try Lyrica, and it does absolutely nothing to help me. We added Sklaxin to the regime which is another muscle relaxer. So i now spend every day groggy and in pain, but i convince myself that it is less pain than i would be in if i were on nothing.
2012 - The fibro expert puts me on Sevella but that doesnt do anything. I then go on Effexor with some minor results. I quit going to her because she sucks at what she is an expert at.
My blood pressure starts to creep back up even though i am on the max dose of the blood pressure medication. So my doctor (Dr Goodman at BYU, good guy, decent doctor) added Lisinopril-Hydrochlorothiazide. It brought my pressure back down.
I started to see an internal medicine doctor in California, Dr Cekada. She vowes to leave no stone unturned and make sure that the past doctors havent missed anything so i start doing tests with her. I had a MRI or CT and that showed nothing. She put me on Cymbalta (i no longer take Prozac or Effexor), and that helps a little, but pain is still hovering around 7 with peaks at 8+.
2013 - I am still in school at BYU and am taking a New Venture LaunchPad class from a Rob Lindorf. The class is fun, but more of a class to work on our own companies, with a little oversight, and when we do come to class Ron just tells us stories (he is very sucessful). He tells us his son is dying of Lymes disease, and that he got the Lymes disease in Canada while he was on his mission, but that the Canadian government doesnt even acknowledge that they have Lymes disease in their country. Anyways he plants the bug in me that i should get tested for Lymes and that there are only 2 lab in the country that are capable of doing it right.
I ask Dr Goodman if i should get retested for Lymes because i have meet a professor that said it would be a good idea. Dr Goodman asked me if i have spent much time on the East Coast, and i say that i have not and then Dr Goodman then says that it would be a waist of time and money.
I go back to the internist in California Dr Cekada and ask her the same questions and she says, California and Utah dont have Lymes disease and there is no point to get tested.
2014 - I move up to Cache Valley, Utah and have to get a new Doctor because Obama lied and i cant keep going to the doctors i like. So i get a new doctor on Obama's list (ok it was actually Utah state's list.
Ron continues to email me and bug me about getting tested properly. So i go to my doctor and ask him. Dr Avery (my new doctor) says, "Have you lived on the East Coast?" I say "no." He says "well there is no point in doing the test, Utah doesnt have Lymes disease. All the people who i have treated who have had it were transplants from back east." I tell him i am paying cash out of my pocket, all i am asking is that he signs the paper. He is super reluctant, but sign is.
10/14/14 - I get my hand on a copy of the test (as of today Dr Avery has not called me with the results) and send it to Ron who is an expert in the field because his son is dying from Lymes and so Lymes has become his life, and Ron confirms what i could deduce from the test, that in fact i do have Lymes disease.
So the moral of that story is Ron Lindorf saved my life. There will be a future post on him in the future i am sure.
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Really simple Lyme overview:
Lymes disease is transferred by ticks the size of a poppy seed. The tick plants the Lyme bacteria and the host is now infected. The spirochetes (or worm like Lyme bacteria) spread in the body and cause havoc.
So my body is filled with spirochetes which are basically small bacteria worms:
Most people who are cured of Lymes disease catch the disease in the first 6 months. Every year after that the spirochetes cause more damage, and are harder to get rid of. Most likely i have had Lymes disease for 9-14 years, so i am worst case, not best case scenario.
Taking minocyclene for acne probably helped suppress the spirochetes, but they have had free reign since 2005.
Lyme's Disease Does Kill
When i say i am dying of Lymes disease, i am saying that because i have thousands, millions, hundreds of millions of spirochetes who are making my body their home. Death from Lymes is rare, but maybe more common than we think. Many of the deaths are from suicide. Also with my "heart problems" (high BP, etc) i may also have Lyme Cardidis which is when my little worm buddies progress to my heart and start snacking on it.
So most of the time i say i am dying of Lymes in jest, but at any moment i could collapse and die. I dont know where the spirochetes are? I dont know how much damage has been done, and neither will my doctors.
I will get much worse before i get any better! (More on that in a later post)
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About My Doctors
Now back to Dr Mathews who tested me for Lymes back in 2010. He did is wrong. He had the right idea, but the test he performed was horribly inaccurate and he blew it big time. I could be 100% cured of Lymes at this point had he known his shit. How many others have pass through his office and had the same thing happen to them? Shame on you Dr Mathews! I am 10 times worse today that i was the day i walked into your office. I have lost 4 years of my life because of your ignorance! Right idea, wrong course of action. You tried so i forgive you!
Now Dr Gayle Cekada (the California internist), Dr Goodman (my BYU doctor) and Dr Avery (the dork who i forced to sign off on it) my wrath towards you will come later. Dr Cekada looked me right in the eye and said i will do everything and turn over every rock to make sure nothing was left behind.....FAIL! Dr Goodman, Utah has Lymes you ass-wipe, and Dr Avery thanks for caring so little about your job that i could just talk you into signing it! You are all forgiven because you cant be held accountable for being so ignorant!
PS. All my doctors are getting personal letters, and ill make sure their ignorance wont kill years of others lives. Maybe ill post each of those letters here. It was their mistake, but it was at my expense and i am 100% in favor of public shaming!
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