posted
I'm days away from my 2nd anniversary with Lyme. I was bitten in Aug 05, diagnosed in Feb 06 (I knew nothing about Lyme at that point).
I had anxiety, vertigo, photophobia, palpitations, weakness, swollen glands, numbness in hands and feet, joint and back pain, dead libido, IBS, fatigue, insomnia, worsened asthma, worsened PMS, mono, sinus infections, yeast infections, temperature intolerances, difficulty swallowing, headaches... pretty much everything you can imagine.
I was on just minocycline for 12 months, and just stopped in Feb. 07. I stopped after seeing a different doctor who recommended I stop. The first few days off the meds were terrrible, then I gradually got better. I can sleep, the pains went away, I haven't been sick except for normal allergies, I can feel my hands and feet, etc. but there are some things I can't shake.
Physically, my libido is still pretty dead, which made it especially hard to maintain the relationship I was in while I was sick. (I'm a 22-year-old female college student...). I also have PMS now, when I never had it before Lyme, except for maybe cramps every now and then. Now I have severe water retention/bloating, and headaches.
The worst physical (is it?) remainder is the photophobia. I LOVE shopping, and I haven't been able to go into a mall in a looong time. Several other stores also bother me. I'm still not 100% sure what it is, but I'm pretty sure it's the lights. I'm fine in some stores / places, but not the bigger, more spacious ones, so is it even lights, or is it a spatial thing?
Whatever it is, it's enough to be my biggest physical obstacle. My balance feels off in these places; I feel I have to walk sideways or along walls. And I have to have sunglasses on! This makes me not want to go places even though I otherwise physically can. This makes me afraid to move away from home, and makes me feel just freakish enough. I have to reject invites and adapt my life to accommodate this pain.
I have some minor depression because I didn't see a lot of friends while I was sick. And so many people I know have graduated / moved / traveled / otherwise DONE something normal to enjoy their normal college/post-college life. And I often think about the symptoms I had and how scared I was and I just get so down.
More than all that, though, is I'm scared I'm not fully better. I want to move and finish school and get on with my life. But I'm scared symptoms will come back, or the balance thing will get worse. And that's bad enough that it can give me anxiety, which still freaks me out.
Here's what I've done so far:
*I had to drop out while I was sick. But after maybe a semester or two off, I started taking online classes to complete my degree (I should be done in the spring, putting me only a year "behind"). Healthy people finish school!
*I'm working again, and even got promoted in a job that I actually JUST left by choice...just bc I needed to move on. Healthy people work!
*I'm trying to realize that I have had a little blessing in this because I got to think about how I don't want to waste time, and how valuable my health is, and how fortunate I was to make it through.
*I've just been OUT and meeting people and hanging out and slowly becoming social again. I've long had problems making and maintaining friends, and now it's even harder because of my fears.
Sorry, this was very long. But if anyone has any insight into those balance issues or PMS -- or how to get back to living normally. Does it seem like I should still be on meds? I'm considering seeing my doctor for the first time in 6 months to try to sort out these lingering symptoms.
I'm tired of being scared, and I'm scared of being and doing things alone, but i don't know how to do it.
Posts: 17 | From MD | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
MOna,,I agree, it's the lights most likely- we've had several threds on this and I had this as well as many other pepole-
Fluorsecent lights the kind they have in stores actually strobe on and off so fast people can't see it but for some reason it gets a lot of us Lymies sick.
I could not go in our local grocery store anymore because it got me to feel so sick I would have to leave.
That is 100% gone now with abx tx.
For me, I also had never had PMS before Lyme and it was one of my first symptoms- HOWEVER- I came to realize that for me it is not Lyme I don't htink, but Babesiosis which affected my blood flow and length of period as well.
For me abx got rid of everything and I hope they do for you, too. One year may seem like a long time normally for tx but with Lyme it's not-
Welcome back, welcome back, welcome back*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Were either of the doctors LLMD's? My concern would be coinfections.
I can see why you would live in fear that it's not gone! Especially when you're still having wacky symptoms.
Are you feeling good otherwise?
Hopefully, your doctor can give you some peace of mind.
You might consider buying Healing Lyme by Buhner and taking the herbs to either get rid of what's left or prevent it from coming back. Maybe if you were doing something proactive for your health your fear would diminish. I know when I'm done with treatment, I want to do all I can do to keep in remission!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My docs were definitely LL. I'm actually going back to my first Lyme doc TOMORROW for the first time in 6 months because I've been thinking about this so much. Thanks.
Posts: 17 | From MD | Registered: Aug 2007
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Sorry to hear such symptoms remain and kind of surprised to hear you say you're done with treatment. Always good to check with your LLMD.
(And yes, I experienced what you did and it went away with treatment for Lyme and Bart and addressing the issues below)
My instant thoughts are: Have you addressed
detoxification?
mineral levels? (particularly Magnesium - IV or IM will help restore if low, not oral)
adrenal fatigue?
parasite and fungal issues?
and of course coinfections...
There's more to it than just taking antibiotics once it's become ingrained in your body. Each is just a small piece of the puzzle, and without all the pieces in place, the puzzle will not be finished.
I hope you get some assurance/assistance from your dr.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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