I woke up last night at 1.30am unable to move or speak. It was either demonic possession or lyme - or both, who knows what really causes all our ills and aches. I no longer trust science or medicine or anything. All are ignorant. We are our only advocates. I've tried putting all this before God, but though I'm a faithful (mostly) servant of his and I believe in a sovereign God, he's either not listening or wants me to be sick. I'm not sure.

Either way I'm on the brink of breaking up with the woman I love, the woman I had intended to marry, because I fear for her safety with this. We are chaste, which means sexual transmission is not a risk yet, but she is showing some early signs of lyme (either that or I'm blowing every ache and clicking joint of her's out of proportion). I can't begin to convince myself this is transmittable through saliva, though. How does that figure? If that were the case, literally everybody would have Lyme by now. Either way it's killing me that she might be at risk from this one way or another and I love her too much to expose her to this.

I was told today by my college professor that I should submit my work to an awards committee who can pay for a PhD for me with a view to teaching at college in the future. It's a prestigious institute and I feel honoured.

There are so many blessings in my life that I would feel like the luckiest man alive. I did feel that way once. And then this disease came from nowhere during a chance encounter on my holiday in the States.

I feel like drinking myself to oblivion after a long spell of sobriety (won a fight with alcohol about two years ago. find myself slipping once again. thoughts of death etc. etc.)

Life in itself is an incredible thing, but the one where I'm in pain, where everything is uncertain, where I'm putting loved ones at risk... That's not a life worth living at all. I hate what I've become.

I don't know why we suffer. But, there is a Bible verse that really speaks to me. I'll share it with you.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 2 Corinithians 1: 3-4 NKJV

Though levels of personal suffering differ, pain and heartache are universal. God's comfort is at hand in every type of trouble.

Please keep reaching out to us and don't stop looking for your 'cure.' Both of your stories are heartbreaking and I really feel for you.

both of your stories break my heart. I can so relate too. I started to get really sick when I was 20. over 10 years ago. It took many years of misdiagnoses, and utter pain to get a diagnosis. In that time I got married and had 2 beautiful children. I sometimes hate myself for having kids, now that I know what I have...the fear of having passed this onto them is intense. You want your kids to have a better life than you have, not feel the pain you feel. I wonder every day if I've subjected them to a life of hell.

Someone told a minister on TV that he was "Saved" and since then, life has been wonderful, and this minister said "I don't know what kind of saved you were". meaning, our faith is tested, the closer to God we get, the more we are tested. I'm finding this to be so true. But we have to remember, that God already knows every word not yet spoken, every action not yet taken, he knows the course of it all . We are here to learn something, then we can move on.

Don't give up, I see people get better all the time from this. It does happen. Anxiety, I know your girlfriend was in the states and was bit a time or two by mosqiotos as well, so it is possible she does have it, and it's not just in the states, bugs don't know borders. So you likely haven't infected her. I know we've talked privatly about all this. I know how much you love her, and I think she's so lucky to have you. Have you talked to her about how you feel?

It's just not fair...the whole deal...and it sux big time. I got sick at the age of 7, and by 13 uncontrolled Lyme and puberty - worst case scenario. In 8th grade I had a rec couch for basketball, that called a friend who was a college scout to come and see some of my games. After 3 games, he told me he would be watching my HS career - as he could see a star in me. But 8th grade was a far as I got - last day of school was the last day I was me. The athletic me.

So I know it friggen sux so much. But you CANNOT let the negative feelings consume you. Here I am almost 35, 4 kids, never been in a full remission, and I find a way. I am not religious in terms of organized religion, but I do believe that things do happen for a reason. We are not given anything that we cannot handle - some say god gives us this - whomever has bestowed this upon us has done so, because each one of us can get through it.

I have often thought about this - and the why's? Eventually I got to looking at me - why, what is it about me...what do I bring to the table? Each one of us has the ability to reach out and connect, to make a difference in someones life...the lessons that we learn with this disease tends to make many of us more understanding and compassionate people. We are willing to listen to those who feel no one listens. We know that anything is possible, and we can be one hell of a determined bunch. And these qualities are shared with others, to continue building a collective strength.

Find what it is about you that makes you capable. You keep fighting, no matter what. Feel the anger, depression and the despair, but never let it consume you.

You guys are so young, and like Jamie said it is heart breaking. Considering your age, and how things have barely changed over the last 20-30 years, I honestly think it is going to start with your generation - the fight that is going to change things. While you guys are among the young fresh minds in college, you have the power to reach even one person, one who just may be leaning toward a career that can one day change how things are.

I fully believe that those of us with this disease, who have come to the table and taken charge, are teachers in this life. We work hard through much suffering to know and understand this disease, and every so often we are faced with a person who actually listens...and we teach them. You each have a strength within you push through and survive.

Anxiety - hun, dont let this disease instill a fear within you that takes the good things from your life. you have a right to love and happiness. This disease can be controlled. Dont fall victim to the negative, it is a dark and murky hole that is so hard to climb out of. This is a fight that you must fight.

i understand the intense pain, I have had chronic pain since i was about 16, and even today I am having an episode with my spine - being left immobile is scary and just plain horrible, but you cant let it take hold of your spirit.

Well, i have obviously gone on and on. And I hope that something that I have said can at some point help you. Believe in yourselves and know that you are not alone in this fight. You can and will find a way to beat this. hold on tight to the good things in your life - athletics come and go but the love of someone who loves you no matter what is so hard to come by.

Okies - gonna cut out here...always here if you need an ear.

Christine

The things that you have to be thankful for are many, as you have both said. One you didn't list is that you do have a diagnosis. And I don't want to make this about me. Honestly, there are so many of us out there who struggle to get a diagnosis. And many who don't have insurance, who can't afford care, who are suffering endlessly...

I think the main thing I'm trying to say is that it can always be worse. And that is something I've tried very hard recently to recognize and embrace. I understand the deep, dark depression that you can be dragged into. I've been there and done that. But the harder you fall, the deeper you fall, the harder and longer it takes for you to get back up and become the person you need to be.

As Christine said, I, too, am certain that your generation is the one who will have to take charge and get us all the help we need and, frankly, deserve. You have the power and the voices. Stand up and use them. You have such bright futures ahead of you. See this not as a disability, but as an opportunity. Somehow, find it within you, get fired up, whatever you need to do, and move ahead.

If you ever want someone to talk to, please feel free to PM me. I've been through the wringer, too...I understand much of what you both have to say. I hope that you both will get to feeling better soon. And if the conventional treatments fail, please look at alternative ones.

*hugs*

Jen

And again my main concern is not for me, but for my family. Everytime mom says "I'm having very bizarre dreams these days, very strange" my heart beats faster. Everytime dad says "I've got a cracking headache..." or my girlfriend, especially, comments on a sore neck, I have to bite my tongue and send up a prayer to God.

I'm really not sure I can live like this.

It sounds like you could be having a "Herx," or a Jarisch-Herxheimer-like reaction. We tend to call them just a "Herx." When you go on medication that is supposed to help, sometimes you start to feel much worse, but what that feeling is is really the bacteria dying off in your bloodstream and producing toxins that make you much sicker. They tend to produce many of whatever your main LD symptoms are, so each of us seems to have a different Herx when we do, but we often feel like we're gonna die. I've had several, so I can sympathize. Doxy seems to be one of the drugs that is particularly harsh with regard to causing Herx'es. Which is not to say that all of us do experience them, but it sounds like that may very well be what's going on.

However, I would also caveat that with the idea that you may very well need more medication than your doctor is advising. If he intends to treat you for 3 months past your symptoms, you should be aware that it may very well take much longer than he is projecting. It's just been my experience from talking to other members here that people who have been ill for over a year need to be on oral ab's for longer than just 2 to 5 months, especially if his projection is for you to feel well for 3 month with no symptoms. Just be aware of that.

I'd advise you to consider keeping a diary of your symptoms, a DAILY diary, so that you know what is going on. Herx'es tend to come in 4 week cycles, so about every 4 weeks, you will feel rotten. Check out the thread "full moon howling with pain," cuz there's a lot of info there about lunar cycles and how they can affect pain as well. Many of us have seen a major increase in pain over the last several days, and the last several days have corresponded to the coming full moon. Also, we noticed the same thing last month as well. We are sort of anecdotally charting this situation here on the board, so perhaps it is something you would be interested in.

My first Herx on doxy lasted about 8 to 9 days, some people experience them closer to 14 days...If you aren't increasing your dosage, I would expect not much more than that. If you are really uncomfortable, please consult your doctor! If you want to verify anything I've said, it's also a great idea to consult your doc, too. Other people will probably reply and talk with you, too... I'm sure I won't be the only one! As you continue with your meds, I'd expect to see less of a Herx as time goes on, with fewer symptoms and decreasing severity.

One last thing I'd like to say, and I'll be brief, because I know this was long. Please don't live your life in fear. There are too many things in life you can't control. Don't try to control this disease--for you or your family. The best you can do is to live your life to the best of your ability. Treat yourself as directed, learn all you can, inform yourself, and look after yourself. You are no good to your family if you are stressed out and in pain constantly from worry and fear. Worry is simply negative prayer--ever heard that saying? It's like packaging up a black cloud and sending to the person you are worried about. Think more positive thoughts--"I hope they do not have this, I do not want them to," but stop the worry. You can't control it, and you shouldn't have to. That's not what life is about. You must live it to its full extent.

There are pains and pangs that everyone gets, and when we have LD, we start to jump to the conclusion that everyone else around us has it, even if they are totally unsymptomatic, but have ONE thing that makes us go, "OMG!!!!" Relax, and let life take its course. If they have it, there is nothing you can do to change it. That is the sad fact. If things change, and more symptoms occur, you can encourage them to see your doctor, and you will be more informed and able to help them in ways they weren't able to help you. But that is all you can do.

I know that sounds very fatalistic, but it is not meant to. It's just that you must live for you now!

If you need anything at all, please still feel free to PM me, k? *hugs*

Jen

I totally agree here with Fluffers...

Definately sounds like you are herxing - and that is a good thing. Be sure to drink plenty of water, to help the detox process...and keep in mind that doxy may not be enough. This is a disease that typically needs to be attacked from multiple angles...multiple abx and alt treatments...slowly but surely.

And like she said, you cannot live your life in fear. Fear can be such a negative thing in your life. If family memebers do have it, there is nothing that you can do about that fact...but there is always hope and treatment options. Fear can consume your life, and cause stress that will negatively impact your treatment. You cant afford that.

You have a choice in front of you. You either allow this disease to Make you or Break you. You can empower yourself with knowledge and push foreward, or you can succumb to the fears and pains of it. Should you choose to let it break you, you will find yourself miserable.

Allow yourself to feel your emotions, but dont let these feelings hold you back, learn to make them your strengths not your weaknesses...

Christine