IF YOU THINK YOU HAVE LYME DISEASE, PLEASE READ THE COMPLETE LIST OF SYMPTOMS:
There are over 100 symptoms of Lyme disease!
If you have more than 7 of those symptoms, you should be tested for Lyme Disease and other Tick Borne Illnesses.
PLEASE REMEMBER: Lyme disease is prevalent across the Unites States and world. Less than 50% of people see a tick or notice a a rash. The best test for Lyme Disease is The Western Blot (demand it), and it is less than 40% accurate. Lyme disease is a clinical diagnosis.
If you think you have Lyme and your doctor isn’t helping, please see a LLMD. LLMD stands for “Lyme Literate Medical Doctor”. They are doctors, have their license, they just specialize in Lyme Disease and Tick Borne Illiess.
Run to your LLMD, do not walk, as someone once told me, and I am glad I did!
This was one of the maybe 5 things that convinced me I had Lyme disease. This amazing woman explains this disease in her story perfectly. This is her strory from the beginning to very late stage 3 Lyme. You may never know what it feels like, but she gives the best description. Even if you are not interested in Lyme, it is wonderful, heartbreaking story, with a happy ending!
This will remain the top post on my site, always. I have spoke to her and know many people she has helped. Thank you, Laura!
I really do want to update more, but as I get better, I find more challenges. It never ends. Now that I can think a bit better, I can do more things. So real life comes first. I have stuff that NEEDS to be done. And that piled up for years. I still do Lyme awareness, but my website I put aside.
It takes me a while to write. It’s a huge thinking progress to express my thoughts. But it is better than it used to be.
I was on Lyme and Bartonella treatment for over 3 years. Then I started to get so much better! I was amazed. Then comes the bad part, we still have to kill Babesia. It never freaking ends.
I have been on Babesia treatment for about 4 months. Then I asked my doctor to go more aggressive since I wasn’t having much pain. Then comes the pain. Now remember, my pain level is different that an average persons. I have been in mild pain to “I want to die” pain for many years.
Babesia sucks. Bartonella sucked more. They just sucked in different ways. Bartonella affects your neurological system more/brain. Babesia comes with physical pain. I have a lot of physical pain now. Chest pains, pain in my spleen badly, muscle pain, arthritis pain, can barely stand without getting faint. You name the area, it has hurt.
On top of that, I am about 85% better from the Bartonella, but I still have a lot of issues with it. Mainly my memory, emotions, memory, memory, memory, focus.
There is my thyroid disease, having to eat perfect, detoxing, and once again, never ending things to take care of. Even taking care of your disease is full time.
Well that is short but I need a break already!
I’ve been sick for over two years now. I never put much effort into this site… because I couldn’t. Sometimes other sick people with Lyme wonder how I am now. People with out Lyme may wonder too, but they won’t exactly understand the struggle.
Anyhow, I am better but far from my old self. I know lots of chronic Lymies, and for now, I have never met one that completely beat lyme. Yes, they may have gotten better, but they have their flair ups.
I see my LLMD on the 11th of July. I am still on oral antibiotics. I have gotten so much better, but I have, maybe in the last 5 months, hit a plateau. My doctor said when that happens we will consider IV antibiotics.
I am living in Canada now with my boyfriend. We have a beautiful apartment and a great life together. My meds are legally shipped to Canada. If I am on IV, I will have to be here in the US. My boyfriend cheers me up every day. He makes me complete. It’s like nothing I have ever had before. He lifts my spirits more than anyone I have ever met. The flight from Ottawa to the US is around $600 to $800, so I may be stuck in the US if I get put on the IV antibiotics. Away from my home. My boyfriend. My dogs. I am sad about that, but I have to do whatever it takes.
I should be grateful, not complaining, but this shit is hard. I am very fortunate in a lot of ways. Many people helped save my life.
So I just wanted to post a little update. I will try to post one after my doctors appointment. For now, I am supposed to return to Canada on the 28th. I am extremely exhausted and have had some bad days, so I must try to get as much sleep as possible now
Stay strong all of you Lymies. I know people come here. I see the google search terms, and a lot of them break my heart.
This helped me a lot when I barely had the energy to speak and couldn’t think at all. This has been on a few sites, so I don’t know where to give credit.
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.
May it be an evening star
Shines down upon you
May it be when darkness falls
Your heart will be true
You walk a lonely road
Oh! How far you are from home
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
Originally uploaded by myownprison
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
We left at 6am. I slept in the back seat of the car the whole way there. Walking to his office, which is a pretty short walk, I almost fainted. I fell asleep in the chair. I went back into the room and had my blood pressure taken while lying down, then sitting up. It was very low. I stood up and I could not stand long enough for them to take my blood pressure. I got back on the table and went back to sleep. I suppose it took a while for the doctor to come in because it was way later when they woke me up.
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.
“Talk to you in a few weeks” should not be answered with “I’m on my way home. Don’t go anywhere.”
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.
I see my Lyme doctor in DC next Friday. I am not excited because of how hard the trip is on my body. I have to take notes or I will never be able to remember and communicate all of this.
Symptoms over months since Babesia treatment:
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
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.
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.