posted
Hey there to all! Soooo.... I'm having a little breakdown and I feel the only place I can vent is here because only lymees seem to understand lymees.
quite frankly, i don't even know where to begin. I was recently diagnosed in 12/07 after seeing numerous doctors since the age of 7 (I'm now 23). The doctor who diagnosed me seems to be uninterested in taking me seriously anymore(he's recently started treating lyme patients).
...Ugh. my brain is just so jumbled right now. I have made an appointment to see a real LLMD that is not in my state. That's not until august and at the moment, I'm just living off of my doxy. after reading a particular lyme treatment guide, i decided to up my own dose to 200mg bid, rather than what the doctor who dx me prescribed.
When I was first told (in a very NOT-compassionate way) that I had lyme disease, i was SOOO happy to finally have an answer. he did not explain the disease to me and what lyme patients actually have to go through to get better.
..... I'm just so frustrated!! It's been 6 months since I've been diagnosed and I feel that nothing is being done. I am so grateful that i went to one of the Under Our Skin premiers b/c i was able to find a doctor who could help me. In the meantime, i feel like i'm crazy. I ask myself everyday ' do i really have lyme disease or am i making something out of nothing'. then my knees remind me (among the rest of my body) that 'something' is not normal.
I'm also in the application pool for medical school. I'm studying for my MCAT, just praying to god that i do well enough to get into medical school so i can be a physician who treats lyme its coinfections and mycotoxins.
On a normal day, I am strong and can hold myself together. I just feel so lost today. I feel ... I don't even know what I feel.....
anyway, if you're still reading, thanks. sorry for the unorganized rant....
I hope all is well and that your body is treating you kindly!!
-------------------- "So I decided to tell my neurologist everything I felt. I said, "I can't think straight, my neck hurts, my muscles are weak, I'm nauseous, I have vision problems....." My doctor's response: "Sounds like Glaucoma." Un/misdiagnosed 15 years. Dx 12/07 Posts: 11 | From USA | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome JEN! Future Jen, MD.
Good for you!
Now... first things first.
If you posted that you didn't feel crazy... we would have to toss you out of here. I think we are all required to think and/or hear at least once while going through the Lyme diagnostic process, that we are nuts.
Almost as good as having a CDC positive test!
As far as feeling lonely... you now have some friends who DO understand what you are going through. I am sorry you had to jump on the Lyme ship... but at least you'll know others who are in that same boat.
Trust me.. there isn't much we haven't heard here... so feel free to vent.
BettyG should be able to share some good basic information with you so you can get on the learning road. I am sure if you've been diagnosed you have already tried to learn some things.
I've heard doctors say that Lyme patients are the most educated about their disease than any other group of patients.
Unfortunately, education is what we HAD to have to save ourselves, because not many know much about it. It was a do or die for many of us.
So pull up a seat, take your shoes off.... and set a spell.
You are in good company here.
PS.. How about those storms today! MY oh my! Not much rain but lots of bing bang booms!
posted
Jenn- You are on the right track and being on this site will help in all areas. No question or statement is to crazy!
I was dx in Dec. '07 as well and w/the help of a good LLMD and many caring friends on & off the web and my family, I am seeing improvement and hope.
I still have days that my body and brain are on strike and I can't function, but I know I WILL WIN!
Feel free to pm me if you just want me to share a smile. There was a time I physically couldn't smile-now I can share mine most days.
The 1st thing I really had a hard time doing was accepting that I was really sick and HAD to take care of myself. Force yourself to take many breaks and allow you to be #1. Listen to your body- too much stress, pain, and fatigue will pull you down.
Break up your study time, drink lots of fluids, and take care of yourself- we need more LLMDs and you will help many as soon as you get help for yourself.
posted
Hi there!!! I'm so glad you found us!! Sorry you had to listen to Tincup.. She IS the craziest one here, hands down!!
You were very smart to up the dosage of the doxy. 200mg a day won't do much except make the keets angry!!
Keep learning all you can. We DO need some more good Lyme docs!
Your Lymie friend, Lymetoo
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
welcome jen! a future llmd...WHOOPIE!!! you made our days here!! so glad you found us!
yes, we're all walkign in the same shoes, and will help educate you and be there to give you support or hear you rant as need be!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Welcome
Your post seemed pretty organized to me. Glad you have a llmd now.
Listen to your body... with lyme this is so important.
We all have bad days and understand. Hopefully tommorrow will be a better one for you.
It's nice to have a place to come to where people understand pain and frustration.
hope everyone is doing well as you read this.
...Just wanted to say 'Thank You!!...
-------------------- "So I decided to tell my neurologist everything I felt. I said, "I can't think straight, my neck hurts, my muscles are weak, I'm nauseous, I have vision problems....." My doctor's response: "Sounds like Glaucoma." Un/misdiagnosed 15 years. Dx 12/07 Posts: 11 | From USA | Registered: Jun 2008
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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