Hi all, Please share experiences on going to college with lyme disease. What to expect at the Health Center, etc. Thank you.
Posted by sixgoofykids (Member # 11141) on :
I wouldn't expect much. I broke my little toe and it was so swollen I couldn't put any weight at all on my foot and they wouldn't even give me crutches. I only needed crutches for a day or two, but I had to go to the ER for them as a broken toe didn't qualify. They would give me a cane, which was no help at all since I couldn't put my foot on the ground.
I can't even begin to imagine how useless they would be for Lyme Disease.
Posted by Lymetoo (Member # 743) on :
I doubt they would know very much at all.
Posted by LymeMom Kellye (Member # 24807) on :
My daughter goes to community college. But we are researching 4 year schools. The highest priority for her is to have an LLMD within a short distance. I don't think that they will be of any help. Sorry!
Posted by Momfromtexas (Member # 13726) on :
Thank you.
Posted by Keebler (Member # 12673) on :
- It also can depend upon the state.
For instance, some states have no LLMD at all. Some loudly discount even the presence of lyme, or ticks. [Oregon is one such state. Do not send her to Oregon.]
Colleges health centers in those states would be worse (re: lyme/TBD) than a college in a state that is well educated about this.
Still, no college health center is likely to be responsible for ANY complex medical condition. They are primarily there for first aid and the garden variety of typical symptoms that can be easily addressed.
But, as others say, even for basic first aid, they may of no help.
I had an ovarian tumor the size of a grapefruit in college and the health department doctors totally missed it. Good thing I sought out an independent doctor.
Each campus can have its own parameters so do become clear on what would or would not be covered - and if there is an out of pocket cost to students.
Also get to know the local lyme support group. -
Posted by Keebler (Member # 12673) on :
- Other considerations:
academic flexibility if one or more classes need to be dropped - know the rules for taking an "incomplete" -- or if she'd have to just stop for a month or more.
lodging comfort - quiet rules, other sensory stimuli
social life - choices so that there's more than just a party scene.
support services for those with disabilities - she may be able to register for a tutor, etc. -
Posted by debilyn (Member # 35753) on :
I've worked at a large, public university. The health center there would not have a clue about Lyme.
It is kind of like your basic urgent care.
On the other hand, I have heard good things from students who have attended psychological counseling through the health center at this school.
One more thing, definitely take advantage of the services available for disabled students as Keebler mentioned.
Extra time on tests and homework even tutoring may be the ticket to her college success.
Posted by Momfromtexas (Member # 13726) on :
Thank you, Keebler.
Posted by Keebler (Member # 12673) on :
- Is she sound sensitive (hyperacusis)? Tinnitus?
Does she have vestibular symptoms (inner/middle ear/balance)?
Reading or attention difficulties?
If so, she might easily qualify for support services of various kinds - and even quiet housing. When asked in light conversation, it's easier to just say, "oh, inner ear stuff" and not have to go into the "lyme" label.
In fact, she should be very guarded with whom she shares what about her health.
Mostly so that does not become her identity but also because it's just too much for most to comprehend and then that's wasted the time that could have been spent on another topic.
Maybe practice how to answer questions that other students may ask. Such as:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors -
Posted by Momfromtexas (Member # 13726) on :
Good advice Keebler, thank you.
Posted by Keebler (Member # 12673) on :
- Another matter regarding a roommate: the air.
Spray colognes, spray tans - even "wipe" tans or cosmetics can be too much for anyone with lyme.
Nail varnish, polish remover, bubble baths or shower gels and even shampoos can clobber even right through the bottle, just sitting there.
Cigarettes are used frequently by youth (big sigh).
And if pot is smoked, that can also be way too strong and creates particulate matter.
Now, even if the college or dorm has a "no smoking indoors" policy, that is not always respected.
[And - she should also know the laws of the city and state - so that if there is a "raid" she won't wind up in legal trouble for just being there. Sometimes, a dorm is "raided" so it's just good to have that information just in case for the wrong place, wrong time situation.]
My first roommate my freshman year smoked pot. I could not tolerate the smell or smoke and she got furious with me. It was very upsetting.
In advance, it's vital to get the indoor environmental issues ironed out. -
Posted by Life+Lyme (Member # 33568) on :
I am going to college with Lyme stuff. Very challenging for sure. Best advise is to have your own room--I have a suite style dorm room, so I can take naps undisturbed.
I drove myself to a near-by city ER twice in a semester. Try to stay near a big city with standard doctor offices/hospitals. Student health centers and doc-in-the-boxes leave a lot to be desired.