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Posted 9/26/2009 12:49 AM (GMT 0)
We have a festival going on this weekend that my family and I go to every year. It has parades, a fair, a boat parade and a little band that plays music. It's a really fun festival for adults and kids. Last year, I did not get to go because that's when I really started getting sick and was in bed for three months. It's become very surreal as to how sick I really am. It's been a whole year and here I am, still very sick. It just kinda hit me all at once. I have friends and family from where I live on my MySpace and they are all posting how they're going have fun at the festival. It makes me depressed to see others having fun. Not that I don't want them to have fun. It's just that, here I am AGAIN, sitting at home and my daughter has to suffer. It's just not fair! And it's soooo not fair for her. She doesn't deserve this.

I know I have a good doctor now and I feel like he truly knows what he's doing but the thought of me never getting better stays in the back of my mind. Is this my life now? It's weird because I can't even remember feeling good. It's like this disease has clouded all the good memories I had of myself. I feel like that girl that used to laugh and crack jokes was never me. I am now a grumpy, depressed shell of myself.

I truly hope I get better because if this is my life...I'm sorry but I don't want it. I keep grasping at straws, hoping something good happens soon. Hope is the only thing that keeps me going right now.

I don't mean to be so negative. I'm just tired of this. I guess maybe the Diflucan I am taking is making my emotions much worse. I don't know. I hope I don't bring anyone down. I'm supposed to be the strong one here. I guess I just needed to vent. Thanks for listening.
Posted 9/26/2009 1:01 AM (GMT 0)
Hey CG, Sorry you are feeling so bad. You dont always have to be strong. We are all here for you, just like you are always here for us!! I am also sorry you are going to miss the festival. That stinks. I know how you feel. I think we all want to be the person we were before lyme. try to be positive, After 10 years I am starting to feel better. It can happen!! you will be in my thoughts and prayers
Posted 9/26/2009 1:45 AM (GMT 0)
I know exactly how you feel. I felt like that in March. I was going downhill so fast I actually started writing instructions for people with my passwords and such to different things as I really was thinking if I continue to go down at this pace it won't be long. Never did get too far with that because I couldn't remember half the passwords. :-( And in just a few short months, I am sooooo sooooooooooo much better and I continue to get better! It is amazing! I really hit this thing from all sides at once and after over 2 years of this I am actually am getting better and better! Getting off the antibiotics and going with the Zhang herbs in addition to the infrared sauna and rebounder seems to have turned this disease around. Once you hit on a combo that works for you, Dr. Zhang said you will start to feel better in about 4 months. All those cells damaged by Lyme need time to regenerate into healthy ones.
Posted 9/26/2009 2:24 AM (GMT 0)
I know how you feel. I had a short trip planned to go to Indy for 5 days just to visit may parents and 2 old friends. I haven't been there in over 5 years... and, I had to cancel because I was just too ill. I'm glad I have 12 mos. to re-schedule. But on top of that dissappointment, through the years, I've missed both step-daughters' college graduations among other things. And now they're all in France together. I knew there was NO WAY I could make the trip, recover from the flight, travel through France... and then make the flight home. When my husband and I first got together, we went to Europe 2x, I had never traveled abroad. The 3rd time we went I was very sick, but it was "all in my head" and I was encouraged by pshrink(s) to go.

I am sooo glad my husband went though, he loves to travel (so does my oldest - I call her a "rolling stone"). The 3 of them really get along well together. The kids were exposed to international travel by their Dad.... and it's something they used to do together a lot more of... and something my husband and I were looking forward to doing together. The 3rd and last time I went along, with the girls, I was very ill. I spent at least 75% of the time (or more) in the hotel room, in bed... and in constant pain and fatigue. I have no recollection of most of the trip.... but I don't know that I have all that much to remember.

Robbed, robbed of 9 years of really "living".
Posted 9/26/2009 2:48 AM (GMT 0)
Thanks everyone. Im just a depressed ball of emotions today. Its like no one even cares that Im sitting here alone. After a while, they just all stop asking me how I am doing. I guess it gets tiresome. Or, maybe its just me thinking that way because Im sick.

Jelaine: I dont know how you do it. I wish I was that strong. I used to think I was mentally strong but this disease has really opened up my eyes.

ttlittlestar: The other night after coming out of my sauna, I felt really bad. I thought maybe I was herxing but about two hours later, my arms and legs felt really heavy and I felt strange. I thought I may need to go to the hospital but decided to try some pedialite since Ive read that saunas can deplinish your electrolytes. I felt a little better after drinking it but stayed in bed the rest of the day. Any ideas what this could be? It wasn't like a regular herx.
Posted 9/26/2009 4:13 AM (GMT 0)
Hey CG~
You know you're never truly alone in this. We are all here for you too. None of us is stronger than when we come together, here, like we do. I know I would have never made it through this last yr without those that frequent this board.
It is hard to have to stay at home - no matter what your desires are.
I was sitting here at home, realizing that I was 'never' going to get adequate tx in this area, when I saw the promo for that book I've been waiting for (it came today!). Up until then, I was sure I had checked out every avenue for tx - finances being an issue, of course - but there was no more I could do, but wait.
Just hang on - your daughter will have an amazing amount of understanding. My two kids (24 & 25) have NEVER known me as anything but sick - now they are amazing adults - they have empathy, care & concern beyond others their age (ok, I'm a little proud of them!). I just wanted to say that kids can be truly amazing under hard circumstances, and very understanding.
Besides, CG, you're a Lymie!!!! Of course you need to vent!! smilewinkgrin
Big, gentle hugs to you~
Trav
Posted 9/26/2009 6:44 AM (GMT 0)
CG-

Hugs, hugs and more hugs! You don't have to feel bad about being "negative"- we're all here to help and support each other. So vent away! Goodness knows I've done enough of it lately- and you've always been there to help me out! Lyme is tough because it can be so hard, and take so long, to see progress. And there is no way for other people to tell you when you can expect to be better. So you just have to wait, and hope. But as Traveler says- you never know when things will turn around. You just got a PICC recently, correct? Or you are getting one soon? This change in treatment could be what you need to start seeing improvement. It's tough to have to sit things out because you're sick, but just think about how much more you will appreciate it when you are better!

I hope you feel better soon,

Nicky
Posted 9/26/2009 6:55 PM (GMT 0)
CajunGrl -

You have every right to every feeling you have (and expressing them, of course) on this site and in other ways in your life. I know how nuts this had made me feel in such a short time I can imagine what it's like after years of frustrations, trial and error, being misunderstood (maybe, sometimes) by friends and family, and misdiagnosed by Dr.'s. And I am sorry you are missing out on things, how hard that is, especially when you have a child.

I can tell you are a brave, compassionate, and intelligent human being. I see how you care about what's up with us newbies, how you manage to do that in the midst of your own healing is astounding...I admit that I'm sort of a woo-woo type : ) and I sense you are a spiritual support in this community as well as being a fountain of useful info. Thank you CG!
Posted 9/26/2009 10:11 PM (GMT 0)
So sorry, Cajun Girl. To say I feel your pain literally and figuratively is a gross understatement. It's awful that anyone has to suffer what Lyme patients suffer from daily. I too am in a severe state of depression, and in the last 4 months, the pain, fatigue, and cognitive fogging has never been worse. Yet, those who aren't my family look at me and say, "Well, you LOOK great." Even my family slips from time-to-time, then they remember how irritated I get by it (even though I know people are just trying to be complimentary).

This wretched disease has forced me to do what I would have thought at one time to be unthinkable at my age (41): apply for disability retirement from my job of 17 years. I actually work in law enforcement, and for years my pride has gotten in the way of what my mind and body has been telling me. Finally, at this desperate hour, I have decided to file for disability. Pretty disheartening for a relatively young man who lettered in basketball in high school and played even after the chronic pain kicked in 13 years ago (although I haven't played full court basketball in about 10 years). I can't even play golf anymore, and I was a single-digit handicap golfer. I can't even enjoy a short walk with my wife, kids, and dogs anymore. It sucks! I try to have faith, but like you, I have days when I feel I will NEVER get better. And now I face the daunting prospect of having to support a wife and two young children (7 and 5) who I have been carrying financially for the past 7+ years (my disability income will only be 60% for the first year I am on disability, and 40% for every year thereafter). My wife has been out of the workforce raising our children for close to 8 years, and in this difficult economy, the odds of us both finding something to offset the loss of my income that will also afford me to essentially work from home (because it is about all I can do these days) are slim at best. Suffice it to say, the stress of this entire process has only served to exacerbate my condition.

This weekend, I am watching my children so my wife could have her annual "girls weekend" away. She NEEDS it, and deserves it. She has witnessed the degradation of my life first hand, and has been shouldering both the physical and emotional burden of dealing with and supporting our children. But I feel for my kids, because all they really know is a miserable Daddy who hasn't smiled in years. And that is really the only thing that keeps me going these days. As I packed their lunches and got them off to school, I realized that not only I HAVE to be strong and get better for me. But I HAVE to do it for my wife and kids who deserve to have a husband and father who is full of energy and life. Whether I get there at some point is uncertain. But what I AM certain about is that my commitment to wellness is as strong as it has ever been, and I refuse to live the rest of my life this way.
Posted 9/27/2009 12:57 AM (GMT 0)
Thank you everyone. I'm sorry I didn't reply sooner. I posted and kind of felt stupid after I posted, like I was a whiney baby. I have always been a very strong minded person. No one could ever get me to do anything I didn't want to do. I was always the one taking care of my girls and being by their side when they were sick. Now, they have to see their mother, once so strong minded, sink into this depressed, painful shell. I always thought I could overcome ANYTHING that was set before me. Now here I am, doubting myself. It's amazing how fast the years go by when you are sick. I feel like my life is wasting away. I want to be able to work and help others. That was always my goal. I've always wanted to be a nurse and put it off so that I could be there for my kids. Now that I finally can go.....I get sick. I'm already 39, so it's not like time is on my side. That is one thing that truly upsets me.

Nicky:- I'll be getting my picc line after I do a month of Levaquin. I do feel a lot better about this doctor and his protocol but there's always that lingering doubt in the back of my mind.

LymeinMD:- Your story touched my heart. Thank you for sharing that with me. I hope and pray that you and your wife make it through all of this.

Thank you all for replying. You are all so loving and compassionate. I truly appreciate all of you. You have all made me feel a lot better.
Posted 9/27/2009 4:09 AM (GMT 0)
My pleasure to share my story, CajunGrl. We are all in this thing together. The more we can share with each other, the more informed we all can become, which can only heighten the awareness of this awful and vastly misunderstood disease. I have heard plenty of people say (even where I work), "I've had Lyme disease." in a very cavalier way (they received and fortunately recovered from the typical 2-4 week Doxy approach) Who am I to dispute their claims or trivialize their brush with Lyme? But sometimes I feel like saying, "You really haven't had Lyme disease until you HAVE Lyme disease (chronic persistent Lyme)." The most frustrating thing about what we suffer from is how hard it seems sometimes to convince others that you are REALLY suffering, more than they will ever know.
Posted 9/27/2009 4:57 AM (GMT 0)
Oh, CajunGrl, I am so sorry to hear about your sadness, disappointment and being left out of the festival.  You are not a 'whiner' -- the feelings of being left out, missing fun, and isolation are certainly understandable, and this is NOT FAIR.

First -- couldn't someone in your family take your daughter for you?  Wouldn't that make you feel just a tad better?  Have you asked anyone to do this?  Seems to me that if no one is offering,knowing how ill you are,  that's a bit selfish.

CG, how long have you been sick? I cannot even imagine how long many people here have been ill!  What a nightmare!

Surely, SURELY, part of this problem is the fact that eveyone's body and disease reacts differently to abx and other meds.  And we already know that this bacteria can be very resistent to many abx.

I am no Doc, but am of the opinion that if you are not improving w/ a certain treatment, say, within months, that you probably need a different treatment.  I do stand to be corrected on this, but this seems to make sense as far as abx are concerned.  Most infections respond relatively quickly to adequate doses of abx.

When you said, ' I feel like that girl that used to laugh and crack jokes was never me. I am now a grumpy, depressed shell of myself', I totally relate, even tho  I am nowhere as ill as you are. But have experienced enough to know that your situation and illness are unbearable.

I am glad you have a new Dr and you seem to have faith in him.  Impossible as it seems to nearly everyone here, this disease has GOT to be beatable.  It's a freaking bacteria, and tho everyone responds to various meds differently, there have GOT to be protocols settled upon that are effective for at least most people.

WE are the guinea pigs, the soldiers and the truth seekers.  We MUST keep educating our Drs and ourselves.

We have got to realize that we are amongst the very ranks sick people who are going to make a difference.  We are ALL fighters and will be amongst those who find the cure.

CG, there is a protocol that will cure you --- there must be. I know it's taking too long to find it and I know it will be very difficult to finally learn what will cure you.  Still, there is not one drop of doubt in me that you WILL get better!  This stinking bacteria, along w/ it's nasty co-infections WILL be finally defeated.  Please remember that you are one highly important soldier in this search.

And Lyme in MD,  it will be verrrry interesting to note a final, complete recovery in those  you know who are cavalier and  claim to be cured, or to later hear them complaining of their chronic illness.....  And your dedication to strength is greatly admirable!

Still, I am sorry for everyone involved in this fight, whether they be seriously ill or gaining some relief.  I sincerely believe that if this disease did not attack our minds as it has, it would be a much simpler infection to treat.

Prayers, prayers, and more prayers.  Esp for CajunGrl tonite!

Posted 9/27/2009 5:41 AM (GMT 0)
Wow Cajungirl, I know the sadness and frustration of having to tell a daughter that Mommy doesn't feel well enough or is too tired to do that.

I keep telling my husband, just take her without me, she's a good child and deserves to enjoy her younger years.

Sometimes he does take her, and other times he says it wouldn't be right for them to go without me.

I don't want my daughter to grow up thinking Mommy's always sick and no fun. So, I can relate to how you're feeling, at least somewhat.

My prayers are definitely with all of you, I pray for everyone here every night.
Posted 9/27/2009 5:54 PM (GMT 0)
Not sure the protocol around bumping this up, I'm new to this stuff, but I must say that my heart goes out to strongmom and Lyme in MD -thank you both so much for sharing your stories.

+Lyme Wowza! Everything you posted has been flying around in my head in a big jumble for the last few weeks. This information, put so clearly, is really going to help me face the IDMD tomorrow. The chances that he can help me feel pretty slim - but I just want to walk out of that appointment feeling like I at least a planted a seed of belief in him that there's lyme (" the oh, I had lyme, too folks") and then there's Lyme.

Both the suffering and the love that came out on this thread brought tears to my eyes. Last night at the sauna I met some friends of a 20-year old woman with Lyme who is now studying to be a nautropath because she wants to dedicate her life to helping people with Lyme. She has trouble keeping up in her classes but all the profs know she has Lyme and are supporting her.
Posted 9/27/2009 7:40 PM (GMT 0)
Thanks, Lifedancer. Please make sure to request copies of all lab work! It is best if you can get your Dr to add that to the lab script -- to mail you all results -- so you won't have to wait until you go back to the Dr. to review them.

With my last 3 Drs (PCP, Endocrinologist, LLMD), I found issues in my labwork that they did not even note. In 2 cases, I found at least 3 tests that the Dr ordered, but the lab neglected to do, and the Dr did not notice til I pointed it out. I noticed that all 3 Drs reviewed my results in seconds. There's only certain stuff they are scanning for. Scary, huh?

This is lesson 1.
Posted 9/28/2009 12:15 AM (GMT 0)
CG,

I hope you are feeling better and not so depressed..  Even the strongest of people get depressed, it's normal,  lyme or no lyme..   You are human remember that okay?   We are not machines.

Someone did mention that if your protocol is not working perhaps it's time to think about switching to another one..  My goodness, I tried so many different things before I found the protocol that worked for me..   I was my own guina pig but that was my choice..   Oink Oink!!   I may drink dirt but I am not rolling around in it.. (ut oh, sorry for those people that own pigs) shocked    I do hear they make great pets. 

Anyway, it's okay to vent, I dislike people are act like they are always the strong one...    Sometimes I feel strong (even though I am better) and then I have days where I feel like crying (yeah, perimenopause) and the loss of my baby brother..    Always something, right?

Hang in there Girl!

Denise

Posted 9/28/2009 12:37 AM (GMT 0)
At the end of the day, you are your best advocate, NO DOUBT about. Follow your instincts, and try to find specialists WHO ACTUALLY LISTEN TO THEIR PATIENTS, which can be a lost art these days.
Posted 9/28/2009 12:47 AM (GMT 0)
I listened to my gut instincts as well as my body.. Funny, even before I knew I had lyme I craved raw garlic cloves and was eating them like they were candy..  Something I never did before in my entire life..   Found out later on that the raw garlic cloves acted like an antibiotic, I didn't even know that...

I am extremely skeptic about doctors..  I think if people really listened to their inner thoughts and heart they could become their own advocates...  Who knows one's body best but that person?

I had tried Doxy for 6  or 7 months and I kept telling myself I was better but I was fooling myself.. I did not get better from the Doxy...  Then I started to do my own research and I said to myself "Denise, does it make sense to put poisons in my body to kill other poisons?"  I answered myself "No, it does not"..

So I used alternative medicine that was well researched and that worked for me..   After reading this book it all made so much sense to me, it was like all my curious questions and wondering thoughts were answered right in that book..  

There are great books out there to read about this and I always say that knowledge is power..  especially if what a person learns is going to open their eyes to other protocols no matter what they are and at least try it for 3 or 4 months, one can always go back on antibiotics, right?

Denise

Posted 9/28/2009 12:57 AM (GMT 0)
Stop apologizing CG! We all have our days...well, and weeks and months and years:( I have suffered from depression for so long that I honestly don't remember not being sick. Even my childhood memories (the few that I can remember) are all bad memories, or memories of being sick. I do not remember 1 single time in my life that I was not sick, depressed, or in the midst of my alcoholic binges. And now with the lyme, I can barely even remember the bad stuff anymore.

That didn't help you feel better at all, I know. Me and my ramblings. You will get better. If you never get 100%, you will still get better! If you try different treatments and they don't work, then you try another one! Just don't ever give up. No, your daughter doesn't "deserve" to not be able to go the festival because you are too sick. But, you don't deserve it either! Does she have a friend that she can go with? I know, it will still suck that you can't go together, but maybe you won't feel so bad if you didn't have this guilt added to your other negative emotions.

If you can't get your old life back, or the "old you" back, then you will get a new life, and a new you. No matter how bad it stays, it will get better than it is right now and you will just grow more as a person. Of course, it would be better to "grow more as a person" on a yacht in maui, but some of us just don't have that kind of experience. We get the tough tests in life. You will make it through this; i know you will.

Isn't it terrible not being able to trust your own emotions and thoughts, though? I know for at least the last 10 years I have had to wonder if I was really thinking/feeling the way I did, or if it was just my medication. Sadly, I become a different person with each new med, and I have no idea where I am in the mix anymore. I just try to take the really drastic emotions and reel them in a little bit in case it isn't me. That is a truly hard part about all this. One of the many.

I don't know you personally, but I can tell that you are a kind, loving, caring and giving person. Sadly, for some reason, it seems that these are the types of people who end up suffering the most. But, I think it is because God knows that we can take it and wants people to see you pass this test with flying colors!!!! (sorry if you aren't religious...but I am!lol).

I hope this makes you feel a little better, but it probably won't. These same words never make me feel better, but being on the outside looking in I know they are true.

Angela

p.s. I didn't read any of the replies to your original post...so sorry if I am repeating what other people said or ruining a new topic that transpired idea

Posted 9/28/2009 12:57 AM (GMT 0)
Hey again everyone. Thank you all!! I feel a whole lot better. I think I may have been herxing and I'm on a Lyme cycle too. I've been thinking about the stupidest things and getting upset over it, lol. I feel better now though. It's nice to be able to vent every once in a while.

lifedancer: - I agree with others. Find someone who will listen. If that ID doctor is not Lyme literate, I would bother going. You can call and ask his secretary this. Some of these doctors know nothing about Lyme and the Lyme specific bands on the WB, that by the time you leave out of there, you are second guessing yourself and feel worse than before.

My first LLMD scanned through my WB really fast and it wasn't until I mentioned the test that he actually looked. I just had this gut feeling that he wouldn't be able to help me. My LLMD now? I totally LOVE him! He took his time and looked through ALL of my tests and even made comments. He did a thorough examination. Told me things that I didn't know about neuro Lyme. I was amazed. If you walk in a doctors office knowing more than them, that's not a good thing(except for the doctors that are willing to learn and work with you). Your Lyme doctor should be well versed and hopefully follows ILADS guidelines.

Good luck with everything. You will know if this one is right for you!
Posted 9/28/2009 1:04 AM (GMT 0)
I understand why you feel the way you do, Denise. I too have been seemingly failed by many over the years, but I try to keep in perspective what I have learned just this past year alone about Lyme and try to remember how complicated this wretched disease can be to diagnose and treat. My Lyme doc's approach does include abx, but in low doses over a long period of time (depending on symptoms and how long he believes the patient has been infected), and COMBINED WITH supplements and natural remedies. And he is ready to put on the breaks if I tell him something is causing me more problems than it is worth. That's why I at least believe that I am (FINALLY) in the best hands I can be right now. He believes in the necessity of abx as part of the treatment, but it in no way is it the "traditional" CDC-recommended approach of just throwing doxy at it and calling it a day. He realizes the importance of natural remedies and building up your immune system. All my best.
Posted 9/28/2009 1:07 AM (GMT 0)
Hey Angela,

Awwwwww Maui!! Wouldn't that be nice? Thanks for replying. I actually giggled a little bit. I'm alot better now and my daughter did get to go with a friend, so that helped. She has a homecoming dance coming up in October and wants a dress. I am determined to somehow push myself to get her a dress! I'm already planning that I need to do this before I get on that picc line, lol. I still haven't done my bloodwork or my ultra sound of my liver yet. How the hell am I'm gonna get a dress!?! lol. It's weird how mymind still thinks I can do everything I used too. I guess that's a good thing though. It keeps me hoping.

Btw, you don't ramble. I love reading your posts. Thanks for posting.
Posted 9/28/2009 1:12 AM (GMT 0)
Aww homecoming dress! That sounds like so much fun:) I trust you will find the strength for this particular event and love every second of it. Even when you hear, "oooh, mom, that is so ugly."****. j/k. I just remember doing that to my Mom. I was a rotten teenager:)
Question: Why do you need the liver ultrasound? Are liver problems related to lyme? I'm just asking because they found a bunch of cysts on my liver a few months back, but don't know what they are from. They are going to re-check them in a month or so, I guess just to make sure they are still there and not growing. I can't help but wonder if they are causing me a lot of my abdominal pain.
Posted 9/28/2009 1:20 AM (GMT 0)
My oldest daughter was the complainer, lol. My youngest is easy going. Anything makes her happy.

I'm getting the ultra sound because my liver enzymes have been elevated for a few years now. They think it's fatty liver but I guess the doctor wants to make sure there's nothing else going on.

Where exactly is your pain? I've been having pain in the back on my right side, at the bottom of my ribs. My ribs are inflammed so I can't tell if it's my ribs or my liver.

Please get those spots checked out. If they want to biopsy them, I would do it. It may just be fat deposits though.
Posted 9/28/2009 1:56 AM (GMT 0)
CG, I am glad you feel better emotionally. We all get down even when we are not sick. You have sure been there for me when I had my down days. I just have to tell you that you are not getting old at 39 and it is not too late! Good grief, I am 62 but I can ride a horse bareback so if I can do that at my age, how can you possibly think anything is too late in your life? Never give up and never tell yourself it is too late.
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