posted
This is my third time with Lyme and definitely the worst bout of it I've had. The last two times I've had Lyme I felt much better after taking the antibiotics and was able to resume to my normal life.
This time is different though. I took Doxy for 3 weeks and had 2 follow ups with my primary after in which I explained my symptoms are still there (and some new ones had developed). She seemed unconcerned saying that I just needed rest and to take ibuprofen for the pain.
This is after I've explained to her that all the OTC pain meds I've tried (ibuprofen, acetaminophen, aleve, etc) have not helped at all and that I really cannot afford to be in bed at days on end (I'm in my last year of nursing school and work part time). But she INSISTS that that's all I need to get better.
Needless to say, I'm seeing a specialist next week who I'm hoping can help me but I'm extremely stressed. I'm worried I won't be able to make it through these last two semesters with all the fatigue, joint pain, headaches and memory fog that I've had. And nursing school is not forgiving. If I miss more than a couple classes or get less than a B- in a class they pretty much kick you out or make you stay back a year. Not to mention having to stand for 8 hours straight on these painful knees for clinicals. My job is the same way (I work on campus at Event Management ushering events and running around campus doing errands. I barely get time to sit down).
I start back to school and work next week and am trying not to think about how awful it will be because it brings me to tears...Sorry for ranting but it's so hard to explain this to people who haven't experienced Lyme! They seem to minimize my symptoms which makes me feel like I'm going crazy Posts: 16 | From Glastonbury, CT | Registered: Aug 2012
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This my third time dealing with it - you just want to go to like a Lyme Rehab- Hey seniors on here- haven't been on for awhile do they have those yet??? Doubt it... You just want to heal and sleep and heal at your own pace
But we cannot
Get to a LLMD for sure and getting well is more important then anything
Hang in there .... I know others will be by to help
-------------------- Good friends are like stars... You don't always see them, but you know they are always there!!! Posts: 362 | From west chester, pa | Registered: Apr 2004
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posted
Squeak, I am sorry you are going through this. You are sadly very correct when you state that it is very hard to make people who do not have lyme understand what this is like. I can tell you that stress will most definitely make your symptoms worse. I have been going through an enormous amount of stress lately, and I know my symptoms are becoming even more intense because of it.
I know what you mean about trying not to think of how awful things are cuz it brings you to tears. I have a much less physically demanding job than you do , but it is quite mentally taxing at times. I love my job as an editor tremendously but there are days where I wake up and sob with the effort it takes to get out of bed, let alone to effectively do my job.
I really wish I had the answers for you as to what to do. I can tell you that I empathize a great deal with your situation and that you are not alone in your fears and frustrations. I wish you the best of luck. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry, Squeak. Nursing school is challenging enough, never mind being so sick while you are trying to get through... Your doctor is lyme ignorant, like so many others, thanks to IDSA and CDC. I am glad you will be seeing a LLMD.
I wonder how your primary MD would respond to you providing her with information on a very informative Lyme Disease conference for MD's sponsored by Columbia University in late Sept in Philadelphia. (CEU's for MD's)
posted
Wow, that's tough. I'm going to be praying for you Squeaky. I think God knows who Squeaky is!
Sure hope you found a good LLMD!
Hi, TC!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When you get REAL lyme treatment, everything can turn around.
Oh, you will likely have bad days, but you may just feel better and better. There is no way to know.
So, see a good lyme doctor, obey everything you are told to do, and do the best you can. No sense worrying because that just saps the energy you DO have.
Let us know how it goes. You may have a lot of good news very, very soon.
You are sick and you have been inadequately treated. No wonder you feel so down. When you see a lyme doctor, it is like going to heaven.
You are now with someone who understands your condition completely. They understand the severity of the symptoms. They have tips for improving how you feel (for example: drink lots and lots of water and squeeze lemon into it. Do many things to detox. It makes all the difference in the world.) And, they will give you meds that will be effective against these diseases.
You have just been playing around regarding treating lyme. Now, you are getting serious. Be happy about that. You are now going to be killing some lyme! That's good for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi Squeak,
I don't know how sick you are but I remember that there is a grace period when you start school where you can drop classes without them counting on your record. If you can't handle your class load, there is no shame in going part-time. You can graduate in the summer instead. Or delay as long as you need to heal.
Your goal is to get well and then graduate. You want to be well when you graduate so that you can work.
Nursing school is demanding, the job is even harder. Take advantage of all your learning opportunities now, they will help you in the future.
When you make it through school you will be a better nurse. Having struggled with your own personal sickness makes you more empathetic/sensitive/responsive to others pain and sickness. Your patients will be glad to have you caring for them.
Keep working towards your goal. It is so worth it.
Posts: 5237 | From here | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Can you take a leave of absence - or take just one class for now?
You say that you will be "seeing a specialist next week" - I hope it they are ILADS, not IDSA.
posted
Order antibiotics from overseas and medicate yourself.
Posts: 532 | From Texas | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yes, please, please heed Keebler's advice and make SURE that you are seeing a top-notch LLMD, not and Infectious Disease dr, etc.
There is a good one in your town, although he is extremely booked up. so much so that someone made an appt in Feb., and the soonest appt was in Oct!! But then they get cancellations.
And, yes, maybe you need a leave of absence, or going 1/2 time while you heal.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Can you see a pain med doc? Meds that have helped me - tyl/co, vicodin, demerol, ultram.
If they are needed longterm, I think it's better to have a couple that can be used on a rotational basis, so we don't develop tolerance to one.
I personally think it would be hard to handle a full load like you are doing when you need to treat.
But if you are going to forge ahead, I also suggest checking out any kind of pain-relieving modalities.
For example, waving around a 660nm red light tool can take down pain in swollen joints. Light Energy is one company that carries them (I have no financial affiliation).
How about checking out pain-relieving gels?
If anyone has a PEMF machine around you - PTs and chiros can have them - that can majorly take down pain - stands for pulsed electromagnetic frequency machine -
we hold a coil while the machine clicks out e'm pulses - boosts energy, lowers pain, helps the body to heal faster.
Taking flower pollen can end fatigue and boost energy. I lived on it once when I didn't know I had Lyme.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Thank you so much for all your support everyone! I just got some more blood tests back and it looks like I have Parvo on top of Lyme Disease so that could explain why my symptoms have been so bad. I'm seeing a specialist this week (not sure if he's ILADS or IDSA, I'll look into it). I'm hoping things will start to turn around now that I'm starting to get some real answers.
As far as my schooling goes...I can't drop any classes because they all have to be taken concurrently. If I take one semester off I will likely be set back another year (this is my 5th year in nursing school because I transferred colleges) because certain classes are only offered during certain semesters. If I'm out of school that long I'll have to start paying my loans back and if I'm not going to school then I can't work at my on campus job to pay for my bills and what not.
It's a sticky situation but I'll definitely be informing all my professors and my boss about what I'm going through and hopefully they'll be sympathetic.
In the meantime, I'll take all your suggestions into consideration and self-medicate as much as I can. Thank you all so very very much. I'll keep everyone updated on my progress!
Posts: 16 | From Glastonbury, CT | Registered: Aug 2012
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posted
Speaking as someone who has a minimum of 3 co-infections with the lyme, I know it's harder when you have more infections. My sis just had the lyme and was treated and better, even though she had it for years. Me, on the other hand, I was treated and not better. Treated and treated and finally got better. Not well enough to work, but my co's were not completely dealt with.
If you only have the one coif. you should be able to recover. Hang in there!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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