Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20?s, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practitioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn’t have any outward sign of her illness. She looked “normal”. After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back “normal”.

I was, and sill am, one of the world’s biggest cynics and skeptics (I’m originally from Missouri – so “Show-Me”).

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can’t possibly be this ill and not have something tangible to show for your symptoms.

You’re either just faking it or your lazy or it’s psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That’s the way I approached her illness. It’s time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I’m not saying all of you are ignorant, I’m saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more “traditional” illness, like Lupus or Multiple Sclerosis or Cancer.

I’ve done all the study, I’ve been with my daughter at all of the appointments, I’ve watched the misery she’s been through.

Hey they just can’t help the way this disease treats them. It’s not their fault.

We as family members need to be there to support them. They don’t need our pity. They don’t need our skepticism. They don’t need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you’ll see that it is real. The little buggers who have invaded their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the Internet as well as new books being published everyday on this disease.

We can’t possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she’s back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn’t need someone who claims to love her causing her any more pain than she has already.

Families. from one who has been in your shoes, please let them know you love them.

Let them know you’re there to help them.
Let them know that there’s no way you can possibly understand their pain, but that you will try to understand their illness.

I think one of the most important things I’ve come to learn is that my daughter’s disease may be God’s way to teach me a lesson.

I’m not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad

Mornie utúlië (darkness has come)
Believe and you will find your way
Mornie alantië (darkness has fallen)
A promise lives within you now

May it be the shadows call
Will fly away
May it be you journey on
To light the day
When the night is overcome
You may rise to find the sun

Mornie utúlië (darkness has come)
Believe and you will find your way
Mornie alantië (darkness has fallen)
A promise lives within you now

A promise lives within you now

-Enya

A year ago I bought a new Alienware laptop. It needed one minor repair so Dell sent someone out to fix it. That guy made the laptop 100% non functional when he tried to fix it. They had me send it in to Dell and they return it to me with no webcam installed in it. Two more people tried to fix it. I finally complained and they sent me a refurbished one that I had nothing but problems with.

When my warranty was about to expire, I decided to call and complain a bit. I said I would not renew the warranty, that I was a 10 year customer and I would never buy anything if they didn’t do something about all the problems I had.

They sent me this brand new newer model with lots of upgrades. My old one was a 15 inch and I love the 17 inch one. I did not get the 17 inch because I was very sick at the time and thought it would be too heavy.

I am very happy with them right now. This is worth more than the original one.

See what a little polite complaining can get you

I was basically sleep the whole time while they talked to my mom and woke me up occasionally. Good thing I took notes to bring.

I didn’t get my blood work done like I was supposed to so there wasn’t much they could tell me. If they did, I probably didn’t hear. I was out of it. All I remember is I get a 2 week break from antibiotics. I am very toxic. They told me to stop taking glutmine and switched some other meds.

I will get my blood work done asap. I want to know what is going on.

I have so much to accomplish but no energy.

I slept the whole way home from DC. The trip was 14 hours. Then I got home and went to sleep for at least 4 more hours.

That’s all I know for now.

I did accomplish some things last night. I had a bit of energy for a little while. But it is gone again.

The only reason is because he claims he can predict my disease. Which I 100% believe he almost completely can, ALMOST.

He can tell in texts when I am sick. He can tell when I am sick when I speak. When I type. He really can. But he thinks he can predict the outcome which isn’t always true. He tries to avoid me when I’m sick, which I completely understand and I actually told him to do. Occasionally it will piss me off. It only doesn’t piss me off when I am completely out of my mind and have no clue WTF I am even talking about. If that continues for more than 10 minutes, he probably should just get the hell away from me.

So maybe I should have said this first. I have had a boyfriend that I never mentioned for 5 months. Lyme is so hard to deal with. Right now I don’t feel like I love or remember him well because I am sick. Really sick. The sickest I’ve been in a long time.

I do know that I love him more than anyone I have ever ever been with. He’s the only guy that I think I have felt true love for. I think before I thought I loved guys, but this is just different.

He is amazing and a very strong, good person. I think I’ve only pissed him off once when sick when I insulted him for a few hours. I broke up with him for about 2 weeks after we were together for a month and didn’t talk to him for those two weeks. I have dated other guys and never missed them, but I did miss him. A lot. Things eventually worked out.

I said he broke up with me, but he claims I broke up with him. Which is probably true. I have a bad memory and also a bad habit of getting pissed and telling someone never to talk to me again and then ignoring them for weeks to months. I recently ignored my mom and dad for at least two weeks because I was mad about something. At this moment, I do not even remember what it was.

But my point in the first paragraph was that I’ve told him never to talk to me again several times. This time I wasn’t mean about it and said I don’t want to talk until I am better. All he does is piss me off when I am sick. I know it’s my fault too. Talking it him will only put more stress on both of us. Stress I definitely cannot handle and stress he should not have to deal with.

I have to be on antibiotics for at least a few weeks now. I have never seen a tick in my life until the other day. It was on one of my dogs (I have two).

I wouldn’t have even known it was a tick if I didn’t get Lyme disease. About a week before, she had a haircut at the groomers. When I looked at it, I though it may be a tick, but to me, it kind of looked like a scab. So not knowing any better, I would have probably thought the groomer accidentally cut her.

I have Lyme, I am on antibiotics, why should I be worried? I was a mess when I removed the tick. I was possibly exposed to the bacteria even though I did not touch the tick. There are over 300 strains of Lyme bacteria and several co-infections. Just because I have Lyme, Babesia and Bartonella, does not mean I cannot become infected with something else.

Blah. So I get to herx for a few weeks now. It only progressively gets worse when I don’t take a break from antibiotics. My dog is also taking antibiotics. She has been tested for Lyme, but I don’t believe the tests are accurate, because human ones are sooo far from accurate. I’m not completely sure though. Better safe than sorry.

7/10/11

Symptoms over months since Babesia treatment:

Physical:
Hot and Cold (new symptom with Babesia treatment)
Sweats that increase while sleeping (new symptom with Babesia treatment)
For a few months, constant sleep then it became hard to sleep. Up to 18 hours a day of sleep for days in a row.
Lightheaded. Unable to stand for more than 30 seconds sometimes.
Sever air hunger, worse than ever since I got sick
All over pain and soreness
Itchy, dry skin
Dry mouth

Emotinal:
Crying spells for hours
While talking to people I wll cry for hours and talk about the pain of Lyme, how my life is worthless and always was and never let the subject be changed
Paranoia. Make up things in my head that I will realize are not true when I feel better while not on antibiotics. I accuse people of doing things that aren’t true.
Severe anxiety
Cheek biting and teeth grinding
Forgetting everything. A memory of seconds to minutes sometimes.
Not recognizing people I know known for a long time
Not able to read well, spell or comprehend numbers and severly delayed when I do
Anger. I tell everyone how much I hate them when I am sick. I say rude things I would never have said before I got sick or when I am feeling decent. Usually people I see too much or spend a lot of time with.
No energy. Less energy since Babesia treatment. A lot of the times I do not have the energy to even speak.

All symptoms severly increased while on antibiotics.

Friday, Flagyl day is still the worst herx day when on antibiotics. Sicker in the morning when I take Artemisinin.

You know what pisses me off? Besides everything? The fact that I do not know if I am even entitled to be pissed off about something.

Here’s an extreme example: You’d obviously be pissed off if someone you love cheats on you. I know that is extreme, and I’d have the right to be mad. But there are times in life when small things can upset you just a little bit. Not being treated right, etc. Before I was sick, I was able to judge things so much better. Whatever. I don’t know how to say it.

I’m sick right now. I had a few good weeks of barely any flu symptoms or neuropsychiatric problems. I cried a few times. I yelled maybe once. I didn’t feel *too* sick and luckily when I was, I slept through it for some reason.

Last night I started feeling bad. I was awake forever. I didn’t sleep much today, and when I woke up I was instantly in a pretty bad mood. I also can tell I have a temperature.

So my point is, that I am mad at someone right now, and I don’t know if I was a healthy person, if this thing would piss me off. I know I am sick and I know I am definitely mad about this. I can admit and know that I am sick, and at the same time believe the most fucked up things when my brain is all fucked. I truly believe these things. What I don’t get is why I wouldn’t be able to think “well, I am sick, I am probably just overreacting.” I know Lyme fucks up my brain a lot. I know that all the time, but if I can tell my brain is messed up at every moment it is, then why do I still believe the things I do?

I do remember a bit from when I was much sicker. I used to be over 100x sicker, I would say. I remember at that time not understanding anything and I believed the things in my head even more than I do now. I remember when I first got sick to the extreme, I was so new at it and I just knew I always had a memory, so at first I thought people were lying to me, until just about everyone started telling me the things I thought were wrong.

Do crazy people know that they’re crazy? Probably not.

If you don’t have Lyme, you probably would not understand any of that to the fullest, but someone with Lyme would know exactly what I am talking about. As they always do. There is no typical Lyme patient when it comes to progression of the disease and different infections as well as treatment, but the understanding of the symptoms between us is perfect.

I suppose one thing I do know is that when someone upsets me a tiny bit when I am sick, even if I am entitled to be a little upset, I definitely overreact. I overreact quickly too. I don’t sense time. So if you did something 5 mins or an hour ago, I wouldn’t be able to tell the difference. There is no chance for you to explain before I give you a piece of my fucked up mind. A lot of what I have gotten pissed over was a huge misunderstanding or me not being able to sense time. Also, the Alzheimer’s like symptoms. I may remember my best friend’s name, that she is my best friend, but nothing else about her, so at the moment, I may be pissed at something but disregard every single amazing thing she has done for me in my life and everything I truly know about her.

This is exactly why Lyme affects families, relationships and friendships SO MUCH. Take my body, I don’t care, but don’t take my mind.

http://www.msnbc.msn.com/id/30725967/ns/health-health_care/t/all-she-lost-my-sisters-battle-lyme-disease/

Before, I used to be able to fake that I was in pain. I used to be able to talk to people and just be happy and act somewhat healthy. I could fake it a lot better.

It seems like the pain is getting worse, but I actually don’t think it is. It’s just a different type of pain now.

I am now taking meds for Babesia. On top of having Babesia herxes, I can still feel my Bartonella, so it’s like pure misery to be in more physical pain than ever, on top of that, my brain still far from functions. I have no energy. It hurts to move. I have knocked over 6 glasses of water in 2 days. I broke my ice tray. I can’t think straight. I can’t walk straight. I have no strength. My cough and breathing are worse than ever.

I’m bored. I wish I could talk to people. My friends. But I won’t. I mean, what will I even say to them? I don’t feel good 100x. I can’t even stand being around people. Talking is too hard.

Like wtf. Errr. I’m scared to start antibiotics again. I’m not sure if I am at a plateau, if I am getting sicker or if I am just herxing almost 24/7. I called my doctor on Thursday, but they called my mom’s house when they returned the call. I guess I’ll try to call on Monday.

I feel bad being a little baby. Not because I think this isn’t the worst shit ever. Not because I don’t know that suicide is the #1 cause of death and strong men have done it. I feel like a baby because I know what it’s like to feel 100x worse than this right now. That was before I got treatment. At that point, I would have not lived much longer that way. I couldn’t sit up. Lift a glass. Look at my cell phone for more than a few minutes because even with it all the way dimmed, I could not be in any light. The tiniest sound felt like someone was screaming in my ear with a bullhorn.

I’m not sure if all of that is typed correctly or makes sense. I can’t think straight.

I literally do not have the strength to speak. I hear that a lot from people with Lyme. I feel like a vegetable.