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12/03/2012 12:42 PM

Hard to function in every day life

Posts: 53

I'm new here, I am a 25 year old college student. I haven't been diagnosed yet (have Igenex kit coming) I do have most of the Lyme disease symptoms, they have progressively gotten worse since 2006/07. The hardest part is forcing myself to go to class every day and trying to function. I feel like I'm failing my parents if I don't, I've told them that I think that I have Lyme, but they don't really understand.

It seems like going out in public and going to class makes the symptoms flare up worse compared to if I just stayed home and rested. Terrible anxiety, fatigue, brain fog, depersonalization, muscle twitching, sinus problems, as well as head, neck, eye, and jaw pain. I can't stand the fluorescent lighting that they have everywhere. I'm completely exhausted and I only had class for three hours today. I'm supposed to give a presentation in front of the class on Wednesday, I don't think I'm going to be able to do it.

The worse part is not knowing if I have the disease or not, I feel like I'm slowly losing my mind. I used to be so confident, happy, talkative, and outgoing. Now I'm the complete opposite, and it's embarrassing. I don't want people to see me like this. I feel like a failure to myself and my family. I used to have many friends, but I prefer not talk to people if I don't have to because I can never think of the right things to say and it never comes out right.

I'm going to try to make an appointment with my family doctor to see if he'd be willing to do the blood work for the Igenex test. I guess that'd be the place to start. I had some neurological testing done by a LLMD a couple weeks ago and I'm waiting for the results on that. It's nice to be able to relate to so many people on here, even though I wouldn't wish this on anyone.

Post edited by: ryanc, at: 12/03/2012 12:44 PM

Post edited by: ryanc, at: 12/03/2012 12:45 PM


12/03/2012 01:04 PM
khoyt222Posts: 53

I am in a very similar boat. I have Lyme and have for years now. I just started antibiotic treatment in July.

I am a junior in college and have had to take this whole year off from school. I am hoping by next fall I will be able to go even part time.

Even though it was the hardest decision, I am so glad that I took the year off. Even with disability at school I could not function so it was a wise choice for me.

I think it is better to focus on your health and getting better, then go back to school. It has been a few months now that I have been home and I still feel like a failure.

It is good to get as much support as you can. Over the last year I have lost my ability to function on my own when herxing.

So if you get diagnosed with Lyme and start a treatment program, it would be important to have people there for you.

Have you already signed up for school for next semester?

12/03/2012 01:04 PM
Posts: 894

So sorry for what all you're going through at such a young age. It's rough going for sure. May I ask why you're not using your LLMD to do the blood test? I would be very leery about having your family doctor do it. He will most likely follow the CDC guidelines which are grossly outdated.

For the sake of your health, don't waste time with your family doctor no matter how good he is or how much you like him. The more time you waste with a doctor who is not lyme literate, the sicker you become and the harder it becomes to treat this disease. It's urgent that you get your testing done by a LLMD who will know how to dx you based on testing and your symptoms.

Most GP's won't use IGENEX. They'll use LabCorp or Quest and it will be an ELISA test which is horribly inaccurate. You need to get a Western Blot test by IGENEX. Your LLMD will do this and he/she will know if you have LD based on your symptoms and test results. Tests results are not always accurate, that's why you need a LLMD so that he/she can give you a clinical dx based on your symptoms.

I wish you the best on your journey to wellness. Don't lose hope, you can get better.


12/03/2012 01:59 PM
Posts: 53

I'm already signed up for next semester, but can still withdraw. It's getting to the point where it's hard to even function in class. I feel as if it is the right thing to do, but I don't think my family will agree with me.

I feel guilty of being dependent on my parents at age 25 and they're sick of it as well, but I don't know what else to do. I need to find out if I have the disease for sure and I can move on from there.

Glad to hear that you have support, something we all need when we're going through tough times. Have you seen much improvement in your time off so far?

Post edited by: ryanc, at: 12/03/2012 01:59 PM

12/03/2012 02:02 PM
Posts: 53

GWB, I agree the LLMD is probably the right route to take, my mistake the Dr. I saw was a neurologist and isn't able to do blood work or diagnose. I will take your advice and set an appointment up with a LLMD.

12/03/2012 02:44 PM
Posts: 212

I can relate to what you said about being bothered by the lighting everywhere. My solution has been to wear a hat, with a brim or bill to shade my eyes, pretty much everywhere I go.

If you end up withdrawing from school and dependent on your parents, one thing that can really help them to feel less resentful about supporting you and make daily life with them more pleasant for you is to help them in any way you can. This could be doing one or two household chores per day and/or making a simple dinner for the family, packing simple work lunches for them, taking their car in to have an oil change while they're at work, etc. If they feel you're indispensable, they won't resent your presence. Doing this type of thing has worked really well for me in my life. Even feeling pretty poorly I've been able to accomplish a few chores each day which leaves a lot more time for me to rest than if I was working or going to school. Saying 'thank you for supporting me when I'm ill' is also a very powerful and meaningful statement that they will most likely really appreciate.

12/03/2012 04:21 PM
Posts: 32269
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I'm an Advocate

ryan, i'd cancel next semester since you're having a hard enough time making it thru THIS semester.

also, sensitive eyes; NOIR, no infrared sunglasses are wonderful; wearing a baseball cap keeping more light out of your eyes, REDUCED LIGHTING EVERYWHERE,

i have my pc contract/brightness turned down as far as possible.

i even have noir wraparound over my RX sunglasses.

best wishes on your presentation wed. and making it thru this semester.


bettyg, iowa

12/03/2012 05:46 PM
khoyt222Posts: 53

Yeah totally understandable. Coming home and moving back in with my parents at 21 was such a hard decision. So I can't even imagine at 25.

I think it is important that you educate your family whether it ends up being Lyme or another health issue.

If they can get a better understanding of what you are going through it may be helpful, and I really agree with firtrees. Helping out is important.

That has been a huge issue for me. I am used to working, having an internship, and going to school full time. Now making my bed, doing laundry and unloading the dishwasher is an accomplishment.

I now have too look at everything as what I have accomplished, not wow that is all I could do?

I haven't seen too much improvement since being home, but I knew it would be that way. I went undiagnosed for years and have a long road ahead of me recovery wise. I'm currently pulsing antibiotics so I am herxing a lot.

I think that is important to be home though because I have really been able to focus on getting better. I personally think the hardest thing is seeing what I am missing out on. But I try to keep my head up.

12/03/2012 06:45 PM
walkersravenPosts: 563

while I agree overall with GWB my GP was very understanding.....the staff at office did not question that I was sick just didn't know what................I ordered Igenex test myself and GP drew it for's difficult to get appt right away with most LLMDs as they are over run................if you have the Igenex test dose and have a report to take to first LLMD appt it would be to your advantage

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