People have asked what my normal day is like. Or they ask me how i am doing? etc
With Lyme disease nothing is normal, and nothing is predictable. The only thing that is predictable is that I will have some degree of pain every day.
At my worst:
I slept poorly, waking often in pain, or not being able to fall asleep because of pain. When I did sleep it was not restful, but rather a lot of tossing and turning. I wake up long before I am ready, sick to my stomach and nauseous. I take antiemetic medication while still in bed, and try to muster up the strength just to get out of bed and make it to the bathroom. Sometimes the urge to go speeds the process up, other times it can take up to an hour to gain the strength and motivation to get up. On these days, i do not get dressed as I just don't have the energy. Once up I spend some time in the bathroom. My stomach is so messed up from treatment that it is necessary to spend some time here first thing when waking up. After I am done in the bathroom I try to eat. Some days I am unable to do so, and can maybe only get a little meal replacement shakes down. Within 10-30 minutes of eating or drinking I have to return to the bathroom and that pattern will continue the rest of the day. I will not be able to take my morning medication until many hours after I have woken up due to nausea. My pain levels, on a bad day, will fluctuate from 7-unbearable. I will take pain medication to the point that I have a hard time doing anything but functioning. It sucks, but the alternative is much worse. I will probably not have the appetite for lunch, and I won't snack. I will force liquids down throughout the day. This helps filter out toxins and keeps me hydrated. I will spend the entire day on the couch, or in a warm bath, as that is all I will have the energy to do. I will force some food down in the evening, as my nausea normally is not as bad in the evening as it is at the start of the day, so I will eat as much as I possibly can. I will get back into bed about 8 to 10 hours after waking up. I will watch tv in bed, take more pain medication, sleeping pills and try to get to sleep as soon as possible. On a bad night I will not fall asleep for 8 hours after getting into bed (and no this isn't me just sitting in bed watching tv the whole time. I will often turn the tv off and lay in bed, unable to sleep for 4-6 hours.) Then this starts over again the next day.
On an average day average:
I slept alright the night before. I wake and have a mild stomach ache and mild nausea. I visit the bathroom first thing in the morning. I then go for a 30-yard walk to get my muscles going. I return to the house and try to find something that sounds good to eat. I won't have much of an appetite and eating will be a chore. I will get full very quick and often times will start to sweat while I am eating. I will then take some time to rest on the couch. Then I might run (run means drive my car to the store, but jog to go get groceries) to the store, or pharmacy or get on the 4 wheeler and take the dogs on a run. Going to the store is really a challenge for me, and if that is what I do (which I try to only do once every 10 days) then it will zap most of my energy, and i will have not much mental and physical strength left for the rest of the day. I will eat a light lunch, and a normal dinner. I will have pain that ranges from 5-7 hovering more around a 7. My energy will be low and I will tire very easily. I will get into bed 10-12 hours after I get up, and fall asleep within 5 hours.
At my absolute best:
I will have got a good 10 hours of sleep and have no nausea when I wake up. I won't have much of an appetite but will be able to eat an average breakfast. I will try to get some things done that I need to do. None of it will be exerting, and none of it will last too long. This could include mowing the lawn (on a ride on lawnmower), changing the oil in my car, cleaning my room, giving my dog a bath, or things of similar exertion. I might be able to do some fun things like go shooting, or fishing. Lunch and dinner will be average. I will still get into bed no later than 12-13 hours after I woke up, but I should be able to fall asleep within 2-3 hours. My pain will range from 4-6 throughout the day, and I get headaches every day no matter what.
My average days comprise 70% of my life, my bad days will be about 10+% and my best days will be less than 10% of the time. I never know if tomorrow will be a bad day or a good day, so that makes planning hard, so I just don't plan on doing anything I can't do on an average day, and if I am having a bad day then I change my plans to fit accordingly.
When I am actively treating the Lyme, my good days go down to about 1% of the time and my bad days increase to more like 20% of the time. This is due to the stress on my body from the treatment. So I have SOME control over how frequent my bad days will be, but it is a double edge sword. If I am not treating the Lyme then the bacteria are multiplying, but I have more good days and vice versa.
How do you hold down a regular job when you don't know what tomorrow brings? How do you date, have a family, plan trips or jobs, etc? Answer...you cant.
Tuesday, October 20, 2015
Thursday, June 11, 2015
My Fork
So here is a quick update for those who care (analytics show 4 people read the blog so that is about 4 more than should care).
I have stopped all oral antibiotics. They destroyed my stomach, killed my appetite, and i was losing weight. I was a pregnant female with morning sickness, but mine was worse, because even after the nausea leaves i NEVER craved ANYTHING! Also there was no end, it wasnt like in 9 months it would all stop.
Lyme pain + headaches + no appetite + stress + low blood sugar + nausea + no food in all the world sounding appitizing + (no antibiotics = no killing of the bacteria) + lessening hope + depression = scary things looking like better options.
Here are the options (or next steps) the way i see them:
- 1. Intramuscular antibiotic treatment (which i am currently doing with many of the above problems, but the addition of a super sore ass 4 days a week)
- 2. IV antibiotics to the point i either kill the lyme or kill myself.
- 3. Yield to the theory that after 3 weeks of antibiotics you are healed and whatever pain you have is damage from the lyme, and then make a choice:
- Become a hard-core pain killer addict so that i can enjoy life and try to function as a "normal" human.
- Become an insane stunt double, like the stunts where death is probably.
- Become a reality TV star doing ish that could kill you (partly in hopes it does) while still entertaining society
- Move to a country where euthanasia is legal and get signed up.
- Euthanasia myself (cheaper than option 4)
- Figure a way to be a martyr for the cause
If i cant make progress on antibiotics, and/or this is what i am stuck with, then to hell with this awful life. I WILL end it. People arent supposed to live in pain like this.
I had somebody ask me, "What keeps you going, and at what point are you just done?"
I had to think about it for a while. I never had a set number of years that i would allow before i just gave up. But i came up with it, and it answers both questions. My best friend is all that keeps me going. (And my faith in God obviously) If it werent for her my life would be so incredibly hard, and hopeless. So when she, Moki, my dog passes then i better be done with treatment, otherwise we are going out together. She has about 12 years of life left, and that is way more than enough. If i am not in remission by then, then it is time to stop being a drag on society.
Pray for a cure. We need a cure! What we have doesnt work in all people, and it doesnt work well enough!
Monday, May 4, 2015
Thursday, October 23, 2014
My Treatment
This post is going to serve as a treatment journal. I will continue to update this post until i am cured or die ;)
Prior to the start of this post (currently) and going forward (until i declare a stop date) i am taking:
Cymbalta 120mg/day
Flexril 10mg/day additional as needed
Gabapentin 900mg/day
Lisinoprin-Hydrochlorothiazide 20mg-25mg
Vicoden 5-325mg as needed
Naproxen 500mg/2xday
Ranididine 300mg/2xday
Prevacid 30mg as needed
Ritalin 10mg as needed
Concerta 54mg as needed
Supplements:
Multi-vitamin
Vitamin C
Vitamin D3
Lysine
Psyllium husk (2g/day)
October 22, 2014 - I beg Dr. Avery's partner to fill a script for Minocycline. I start by taking 50mg/day
October 25, 2014 - Dropped my Cymbalta from 120mg to 60mg a day. I did this because i dont feel it helps very much. Also it is expensive.
October 28, 2014 - Start Probiotic (15 billion units a day), Tumeric Curcumin, NAC, Calcium D-Glucarate.
October 30, 2014 - Had my first visit with Dr Petersen the Lyme specialist. He was amazing! He spent a full 2 hours with me. He had a white board in his office and it was like i was back in biology class, as he taught us what was happening in my body. He explained some of my pains and fatigues like i never could, giving them scientific reasoning. It was very eye opening and i think my health is FINALLY in the hands of a doctor who knows what he is talking about.
He started me on
Plaquenil (200mg 2x/day),
kept me at Minocycline (100mg/day).
He also gave me
Trazadone for sleep
Tramadol for pain.
He ordered a boat load of labs. He is testing for all kind of stuff.
November 2, 2014 - The tramadol is not effective.
November 2, 2014 - He switched me to Norco 10-325, and stops Norco 5-325. Both as needed for pain.
November 7, 2014 - Upped my Minocycline from 100mg/day to 100mg 2x/day.
December 3, 2014 - Stopped Minocycline due to stomach irritation. Started:
Mefloquine 250mg 1x/WEEK
SRT3 10mcg daily
Ketamine 25mg 3x/day
Zofran 8mg/2xday
Ritalin 20mg/2xday
Ceftin 500mg/2xday
Deplin 15mg/1xday
January 1, 2015-
I started taking the following supplements (most of these are ingredients that were in Dr Peterson's Sleep Tight and Digestive Enzyme, they are cheaper to buy on their own):
Ashwagandha (Sleep support)
Magnesium Chloride (Energy, detox, digestive/circulatory support)
Melatonin (Sleep support)
Passion Flower (Sleep support)
GABA (Sleep support)
Rutin (Digestion support)
Intenzyme Forte (Digestion support)
L-theanine (Sleep support)
5-HTP (Sleep support)
Scullcap Herb (Sleep support)
NOW Food Super Enzymes (Digestion)
Valerian Root (Sleep support)
Burdock Root (Digestion)
Fish Oil
L-Glutamine (Immune support)
Samento (Natural abx)
Banderol (Natural abx)
Super B Complex (Energy)
Alpha Lipoic Acid (Free Radical Support, Detox)
CoQ10 (Heart Support and Energy)
Milk Thistle (Liver Protection)
Prior to the start of this post (currently) and going forward (until i declare a stop date) i am taking:
Cymbalta 120mg/day
Flexril 10mg/day additional as needed
Gabapentin 900mg/day
Lisinoprin-Hydrochlorothiazide 20mg-25mg
Vicoden 5-325mg as needed
Naproxen 500mg/2xday
Ranididine 300mg/2xday
Prevacid 30mg as needed
Ritalin 10mg as needed
Concerta 54mg as needed
Supplements:
Multi-vitamin
Vitamin C
Vitamin D3
Lysine
Psyllium husk (2g/day)
October 22, 2014 - I beg Dr. Avery's partner to fill a script for Minocycline. I start by taking 50mg/day
October 25, 2014 - Dropped my Cymbalta from 120mg to 60mg a day. I did this because i dont feel it helps very much. Also it is expensive.
October 28, 2014 - Start Probiotic (15 billion units a day), Tumeric Curcumin, NAC, Calcium D-Glucarate.
October 30, 2014 - Had my first visit with Dr Petersen the Lyme specialist. He was amazing! He spent a full 2 hours with me. He had a white board in his office and it was like i was back in biology class, as he taught us what was happening in my body. He explained some of my pains and fatigues like i never could, giving them scientific reasoning. It was very eye opening and i think my health is FINALLY in the hands of a doctor who knows what he is talking about.
He started me on
Plaquenil (200mg 2x/day),
kept me at Minocycline (100mg/day).
He also gave me
Trazadone for sleep
Tramadol for pain.
He ordered a boat load of labs. He is testing for all kind of stuff.
November 2, 2014 - The tramadol is not effective.
November 2, 2014 - He switched me to Norco 10-325, and stops Norco 5-325. Both as needed for pain.
November 7, 2014 - Upped my Minocycline from 100mg/day to 100mg 2x/day.
December 3, 2014 - Stopped Minocycline due to stomach irritation. Started:
Mefloquine 250mg 1x/WEEK
SRT3 10mcg daily
Ketamine 25mg 3x/day
Zofran 8mg/2xday
Ritalin 20mg/2xday
Ceftin 500mg/2xday
Deplin 15mg/1xday
January 1, 2015-
I started taking the following supplements (most of these are ingredients that were in Dr Peterson's Sleep Tight and Digestive Enzyme, they are cheaper to buy on their own):
Ashwagandha (Sleep support)
Magnesium Chloride (Energy, detox, digestive/circulatory support)
Melatonin (Sleep support)
Passion Flower (Sleep support)
GABA (Sleep support)
Rutin (Digestion support)
Intenzyme Forte (Digestion support)
L-theanine (Sleep support)
5-HTP (Sleep support)
Scullcap Herb (Sleep support)
NOW Food Super Enzymes (Digestion)
Valerian Root (Sleep support)
Burdock Root (Digestion)
Fish Oil
L-Glutamine (Immune support)
Samento (Natural abx)
Banderol (Natural abx)
Super B Complex (Energy)
Alpha Lipoic Acid (Free Radical Support, Detox)
CoQ10 (Heart Support and Energy)
Milk Thistle (Liver Protection)
Tuesday, October 21, 2014
My Symptoms
Most people (apparently doctors included) have no idea what the symptoms are of Lyme's Disease. I also dont talk much about my symptoms and i have my reasons for doing that, but the main reason is because y'all cant do anything to help. So why bring it up? (I will try to add to this list if i experience any other symptoms.)
One of the few doctors who knows what they are talking about, Dr James Schaller, MD says in his paper titled "Western Blots Made Easy" that Bartonella has about 200 different symptoms and 30 ways of destroying the body.
I am only going to focus on the symptoms i have, and am going to assume all my symptoms are from the Lyme Disease and that i have no coinfectants. (30% of all people with Lymes disease also have one or more coinfectants) I do not know if i have coinfectants, so i cant talk to those at the moment.
Major Symptoms:
Muscular pain - The best way i can describe the type of muscular pain is: that feeling you feel right before a muscle cramps, and/or the ache you feel when you have the flu. I also have pressure point type pain. That pain is more like the type of pain you feel if you get a Charley Horse. The achy/flu like pain is generally located in my jaw, neck, back, and hips. The charley horse pain is typically always in the muscle between my thumb and pointer fingers, arms, neck and calves. The cramp like pain is located in my hips, butt, and calves.
Headache - I have a headache every single day! My headaches stem from my neck most days, but my jaw pain also contributes to my headaches. 1 out of 10 days i wake up and go to bed with a headache. 4 out of 10 days i have a headache within 3 hours of waking up. 9 out of 10 days i have a headache within 6 hours of waking up. On a "good" day i wont get my headache until around 7pm, but that is rare! (**Note all of my headaches could be a result of concussions and head trauma, and totally independent of Lyme's, but headaches are a symptom of Lyme's.)
Fatigue - I dont even remember what energy is! What may be simple to you, can be impossible to me. For example, washing my car would be very challenging. A 1 mile flat walk would be extremely painful. A 1/2 mile walk with a grade wont happen 99 out of 100 days. Fatigue also leads to lack of motivation to do simple tasks. Making a phone call, going to the store to get meds, etc all take a lot of mental effort. **(So if you have ever called and i didnt answer i probably ignored you! Live with it.)
Sleeplessness - I get in bed most nights by 9pm but i can never fall asleep until after midnight. Even if i am sleep deprived it will take me a minimum of 45 minuets to fall asleep. I could get home from travels at 4am and i wont be able to sleep until i shower, and lay in bed for +45 mins. I can lay in bed "relaxing" from 9pm to 2pm and it will still take +45 mins to fall asleep.
Can't Wake-up-ness - I dont know the official term for this, but the only way i can wake up in the morning is by setting an alarm for 30 minuets before i need to be up. When that first alarm goes off i take a 200mg caffein pill then fall back asleep. Then 30 minuets later i MIGHT be able to wake up, but many mornings I cannot even wake up after i take my pill. Keep in mind i never set my alarm to wake me up sooner than after 8 hr 30 min of sleep. So many nights i can sleep for 9 or more hours and 200mg of caffein still wont wake me up.
Moderate Symptoms:
Memory Loss - I have this under moderate because it doesnt really hurt my quality of life. I have VERY few memories prior to my 16th birthday. Most of the memories i do have prior to that time are probably from revisiting memories and people telling me of past memories. (**NOTE: Much/all of my memory loss could be attributed to concussions, but there is no way to tell)
Irritability - Some days everything irritates me! The pain doesnt help that either.
Loss/Lack of Appetite - I can be hungry but not feel like eating anything.
Mild Symptoms:
Nobody cares about mild symptoms when you have so many other symptoms.
To learn about other symptoms that people with Lyme's may face visit lymedisease.org
One of the few doctors who knows what they are talking about, Dr James Schaller, MD says in his paper titled "Western Blots Made Easy" that Bartonella has about 200 different symptoms and 30 ways of destroying the body.
I am only going to focus on the symptoms i have, and am going to assume all my symptoms are from the Lyme Disease and that i have no coinfectants. (30% of all people with Lymes disease also have one or more coinfectants) I do not know if i have coinfectants, so i cant talk to those at the moment.
Major Symptoms:
Muscular pain - The best way i can describe the type of muscular pain is: that feeling you feel right before a muscle cramps, and/or the ache you feel when you have the flu. I also have pressure point type pain. That pain is more like the type of pain you feel if you get a Charley Horse. The achy/flu like pain is generally located in my jaw, neck, back, and hips. The charley horse pain is typically always in the muscle between my thumb and pointer fingers, arms, neck and calves. The cramp like pain is located in my hips, butt, and calves.
Headache - I have a headache every single day! My headaches stem from my neck most days, but my jaw pain also contributes to my headaches. 1 out of 10 days i wake up and go to bed with a headache. 4 out of 10 days i have a headache within 3 hours of waking up. 9 out of 10 days i have a headache within 6 hours of waking up. On a "good" day i wont get my headache until around 7pm, but that is rare! (**Note all of my headaches could be a result of concussions and head trauma, and totally independent of Lyme's, but headaches are a symptom of Lyme's.)
Fatigue - I dont even remember what energy is! What may be simple to you, can be impossible to me. For example, washing my car would be very challenging. A 1 mile flat walk would be extremely painful. A 1/2 mile walk with a grade wont happen 99 out of 100 days. Fatigue also leads to lack of motivation to do simple tasks. Making a phone call, going to the store to get meds, etc all take a lot of mental effort. **(So if you have ever called and i didnt answer i probably ignored you! Live with it.)
Sleeplessness - I get in bed most nights by 9pm but i can never fall asleep until after midnight. Even if i am sleep deprived it will take me a minimum of 45 minuets to fall asleep. I could get home from travels at 4am and i wont be able to sleep until i shower, and lay in bed for +45 mins. I can lay in bed "relaxing" from 9pm to 2pm and it will still take +45 mins to fall asleep.
Can't Wake-up-ness - I dont know the official term for this, but the only way i can wake up in the morning is by setting an alarm for 30 minuets before i need to be up. When that first alarm goes off i take a 200mg caffein pill then fall back asleep. Then 30 minuets later i MIGHT be able to wake up, but many mornings I cannot even wake up after i take my pill. Keep in mind i never set my alarm to wake me up sooner than after 8 hr 30 min of sleep. So many nights i can sleep for 9 or more hours and 200mg of caffein still wont wake me up.
Moderate Symptoms:
Memory Loss - I have this under moderate because it doesnt really hurt my quality of life. I have VERY few memories prior to my 16th birthday. Most of the memories i do have prior to that time are probably from revisiting memories and people telling me of past memories. (**NOTE: Much/all of my memory loss could be attributed to concussions, but there is no way to tell)
Irritability - Some days everything irritates me! The pain doesnt help that either.
Loss/Lack of Appetite - I can be hungry but not feel like eating anything.
Mild Symptoms:
Nobody cares about mild symptoms when you have so many other symptoms.
To learn about other symptoms that people with Lyme's may face visit lymedisease.org
Thursday, October 16, 2014
In the beginning
Back to the Beginning
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.
I never remember the tick, the bite site, any accompanying rash, or even where i would have picked up the tick. I DO know it was in California since that is where i spent my childhood.
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.
________
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:
Every day the spirochetes are alive in my body they are tearing my body apart. Causing pain, sleeplessness, fatigue, etc.
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)
--------------
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!
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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