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New to the site, not the disease. (warning: this is a long one!)

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Posted 8/11/2010 3:44 AM (GMT 0)
Hey everyone! My name is Jenn, and I was diagnosed with Lyme Disease when I was twenty years old. My first three week treatment of doxy did little to nothing to stop the bacteria rampaging its way through my blood stream. After another year and a half of seeing a myriad of doctors, including infect disease specs, rheumatologists, dozens of gps and er doctors; after hearing diagnoses of lupus, chronic fatigue syndrome, fybromyalgia, arthritis, and even a few hints that I might just be crazy, I finally found my wonderful Lyme doc, who has helped me profusely in my battle against a disease that has been undermined by the medical community, and has undermined my life.

I have dropped out of school three times, lost jobs, friends and futures because of one stupid tick on a farm in Arkansas. I have been prescribed at least ten kinds of antibiotics, five kinds of pain killers, had surgery to replace a hernia caused by weak muscles, lost forty pounds, and tossed my cookies more times in the last year than I have in the whole of my life, combined. This month I will be switching from oral meds (which my system rejects volatilely) to IV.

I guess I came to this forum because I'm losing hope. I have been reassured that I will get better, that someday, somehow, I might even be 100% again. It's hard for me to see that possibility when I am unable to stand for more than ten minutes without fainting, can't eat more than 800 calories a day, and am most days so stiff I can't get out of bed. Even harder to swallow is, what am I going to do after this? If/when I get better, how will I pick up the pieces of my life and put them together? I have no education but for a high school diploma and a couple years of college, no money, no stamina or muscle to work eight hours a day. I live every day with the fear that I will be no more than a couch potato for the rest of my life. How will I be able to be a good wife, a good mother, when the time comes for that? I know God is watching me, and He has a plan for my life, but I'm scared.

There are some good things, though. I am getting married to a wonderful man in April, who is both understanding of my condition, and has the patience and love to take care of me at my worst times, my best times, and every time in between. I have a collection of reptiles, who, despite their scaliness, have proved to be invaluable friends. I have loving parents, who have taken me back into their home when I had nowhere else to go, and have provided me with the financial aid I need to get better.

So this is my introduction. I know it's depressing, but I am hoping that someday I will be able to give comfort instead of despair.

Posted 8/11/2010 5:22 AM (GMT 0)
Hi Jenn,

Sorry to hear that you have had such a difficult time these past few years. Everyone here can certainly identify with your story as many of us have walked a similar path in our battle with this illness. I too continue to struggle on a daily basis hoping and praying to one day have this all behind me. It is good that you have some positive news to report in regards to switching to IV meds, having a supportive family along with future wedding plans. I did IV-meds last year for 30 days and had good results, my LLMD talks to me routinely about switching from orals back to IV. I suppose that we have to look for the gradual improvements along the way, this disease is a real challenge for some of us to beat.

You are still very young, don't lose hope, it is amazing what the human body can overcome. I have talked to a lot of people that did eventually recover and are now living very productive lives. Hope that you start seeing some improvement soon.
Posted 8/11/2010 5:36 AM (GMT 0)
Hi Jenn and welcome. I understand what you mean about wondering when you are past this, what will you be left with and what will you do. There are some things you know. You know you will be with a man and a family who love you. That's huge. Beyond that, as you begin to regain your health and build your strength, you will see that the things to which you aspire are not out of reach. Right now when you are so sick it's probably difficult to fathom. But have faith that you will get there. Getting out from under the sickness brought on by oral meds is the first step to feeling better. I hope the IV helps you a lot. I have a Lyme friend locally who was very sick and for whom oral abx was not effective. She started IV 5 months ago and now proclaims it a miracle drug because she has seen so much improvement. There is light at the end of the tunnel.

Rose
Posted 8/11/2010 5:06 PM (GMT 0)
Hi Jenn,
Welcome to our forum!! I'm really sorry that you have a need to be here, but you will find yourself in good company here! There are a lot of kind, caring & compassionate people here.

First I need to mention that we don't post Drs names here, as they are pretty much constantly being hunted down by others in the medical community that are trying to shut them down.

It is possible to recover from all that you are having to deal with right now!!! One member of ours -Deejavu - has recovered but has chosen to continue to post here in order to help give people help & perspective. You might be surprised to find out just how many here can relate to the symptoms you are experiencing!

Are you doing anything to help your body detoxify? A lot of us 'Lymies' need to help our bodies detox. One of the easiest ways is to do a detox bath, and/or a detox foot bath. This could really help you to feel better.

I, like you, have been greatly blessed with a very wonderful, kind, patient man in my life! My kids are also very understanding of my limitations, even if they don't understand what it's like.
Posted 8/11/2010 5:22 PM (GMT 0)
Oops! Fixed that.

I did start a detox diet, consisting of purely fruit and veggies and vitamin supplements recommended by my chiropractor. I made it a week, and was so sick and faint that I had to stop. I've heard it works miracles however.

Even after one day of being on this site, I feel better about having so many people in the same situation as me, willing to share some of their encouragement and hope with me. I want to get better. Even when I feel like it would be easier to give up and die, I want to get better.
Posted 8/11/2010 6:11 PM (GMT 0)
Thank you very much for fixing that!!! We want to protect our docs the best we can!

That kind of a diet doesn't sound very healthy - at least to me. I would be very careful doing something like that. If you want to do a detox diet, I would suggest you ask your LLMD, or there is a diet that several people here call the Lyme diet. I'm not familiar with it, but you can sure start a new post or better yet, do a search on this site to find out more & then post any questions you may still have.

One thing you will find is that it seems like all of the rules change once you have contracted a tick-borne infection. What may be something that is considered good for most people, can turn a Lymies' life upside down! Like steroids - a big no-no for Lymies. There are a lot of us here that have made mistakes because we weren't informed & would like to help other avoid those same mistakes!

I'm really happy that you have already found some comfort from this forum, it's been the only way I have been able to hang on for so many years myself! And should you begin to feel depressed, hang in there!!! Don't feel bad about needing some time to rant, or a shoulder to lean on, or even needing a little help from anti-depressants. We all need help to get through the rough times this disease can sometimes bring. You have a lot to live for!! A new life about to start, wonderful parents, and a world that is just waiting for you to do whatever you excel at!!!

Read as much as you can about the infections you have. From what I have seen, it helps in many ways to know as much as you can about what you are dealing with.

I do hope you find peace on your journey to health.
Posted 8/19/2010 5:14 PM (GMT 0)
Okay, so a little update, I suppose.
Despair and pain are the reigning king and queen of symptoms these days. The prince is fatigue, and the princess is, of course, irritability. I have been nicknamed by my loving and sympathetic Lyme doc "Miss CrankyPants."
At my visit yesterday, the assistant gave me a lime green bracelet that says "www.underourskin.com" and "uncover the epidemic". I'm pretty excited, as I get to have a bracelet and an outward mark of the war waging inside. Breast cancer gets bracelets, Lance got bracelets, so I'm feeling justified that we have bracelets!
On a worse note, last week I deliberately took more meds than recommended, for no medical reason at all. Not to harm myself in any way, though that certainly could have happened, but just to get away for a while. Just to be numb. To not feel, not worry, not despair. Am I ever going to be better? Am I ever going to run and play and sleep like a normal twenty something? **** you, Mr Tick, for taking away my livelihood, my energy, my wellbeing. For taking away my life.
Okay, ranting over. Gotta go look at flowers for my wedding!
Posted 8/19/2010 6:06 PM (GMT 0)
I hate to tell you, fluffylizard, but your story is a normal one. With some variations, it could be any one of us telling a horror story about misdiagnoses and symptoms. Listen to the advice you get on the forum....it will serve you well. As for diet, the first step I would take would be no white sugar and no white flour. Actually, wheat is a problem for a lot of people so you might want to consider alternative grains instead of even whole wheat. That's the minimum. I got out an old old book of mine last night called "Tired or Toxic" by Sherry Rogers, MD. She had/has environmental illness (that was a catch phrase in the 80's, I believe...) and controls it with diet and limited exposure to all chemicals. It's a fascinating book if anybody wants to find it and wade thru it. As for the nightshade thread, Dr. Rogers does not eat nightshades. Lorraine Day, MD also 'cured' herself of breast cancer by making a radical change in her diet and lifestyle. I know, not the same as Lyme, but if the body is given the right stuff to heal, it will do it. In lyme, I'm a firm believer in abx as a necessary tool, although you won't believe it on the days that I whine because I'm so sick. Wow! You got a bracelet!! Your doctor must be a good one!!! As for the "more meds than recommended".....I'm glad you didn't succeed. I, too, tried that trick....interesting place to be mentally, isn't it???? All the best.....
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