Living in fear since daughters LD diagnosis

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lymefight
Regular Member


Date Joined Jun 2015
Total Posts : 24
   Posted 6/8/2015 9:45 AM (GMT -7)   
This isn't about medication, treatments or symptoms. It's about an aftermath of getting the diagnosis... something I never expected. I have lived in fear since my daughter started treatment for LD. Every little speck I examine, I have anxiety about taking my dog for her walks in the forest, I over-analyze any mark on our skin, I worry about my daughter playing in dirt or touching bugs, and even gardening (a passion of mine)!

My husband and I have always been parents who encourage our daughter to play and get dirty (even while wearing a princess dress), let her pick-up bugs and care for them, and being in nature as much as possible. This disease really is debilitating, in more ways than one.

It's only been four days... so, I am hoping this subsides.
Anyone else?

Alyrose2
Regular Member


Date Joined Apr 2015
Total Posts : 239
   Posted 6/8/2015 10:06 AM (GMT -7)   
lymefight - unfortunately for me, it hasn't gotten better. I just got my lyme diagnosis on 4/29/15, one day after my birthday. Ever since then, I have been a nervous wreck. & on 5/25/15 My 4 year old son was bit by a tick and he is receiving 21 days of azithromycin. Ever since that seperate incident, I've been looking at every little spec and wondering if it is a tick, or if he's outside playing he needs to be sprayed. It really is sucking the life out of my family and I. I feel for you, I'm sorry you're going through this as well.

lymefight
Regular Member


Date Joined Jun 2015
Total Posts : 24
   Posted 6/8/2015 10:18 AM (GMT -7)   
Sigh.
I didn't even leave the house for anything but doctor appointments for three days. What stage of LD were you at when diagnosed? My daughter is 3 and they believe still in stage 1 (bullseye rash and neck/feet/head pain)... she's currently on 700mg/day of amox.

I have three camping trips already booked for this summer... and I am anxious even just thinking about them as they are all in heavily wooded area. I eat, sleep and breathe LD these days. sad

Alyrose2 said...
lymefight - unfortunately for me, it hasn't gotten better. I just got my lyme diagnosis on 4/29/15, one day after my birthday. Ever since then, I have been a nervous wreck. & on 5/25/15 My 4 year old son was bit by a tick and he is receiving 21 days of azithromycin. Ever since that seperate incident, I've been looking at every little spec and wondering if it is a tick, or if he's outside playing he needs to be sprayed. It really is sucking the life out of my family and I. I feel for you, I'm sorry you're going through this as well.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27876
   Posted 6/8/2015 10:25 AM (GMT -7)   
Lymefight - She is currently on antibiotics...so I believe she would be "covered" if she got a new bite while on them.

As far as in a few months - if she's off them....you know what to do when you see a bullseye rash..and you know the symptoms. Just educate yourself - and you will be fine.

Remember - not all ticks have lyme disease...

Just do a quick check of her body each evening and more often if she's been in the thick of the woods.

Pay attention to areas - like the back of knees, armpits, groin, head.

I find myself feeling things when I'm in our back yard. I'm swiping at my legs all the time...feeling 'bites' that aren't there. But, I don't have anxiety over it.

As your daughter starts to feel better, hopefully your anxiety will subside.
Moderator, Lyme Forum
Symptoms started April/13; Buhner's protocol May 15/14 to July24/14
Igenex pos. July 3/14 Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14
Amox 1000mg x3 + Probencid Aug. 29/14; added biaxin 500X2 Sept. 26/14
Disc. amox and added Ceftin Nov. 20th. Jan/15 pulsing Tindamax ; disc biaxin
Buhners bart herbs added Dec/14; ABX/Buhner herb break Apr/2015

Alyrose2
Regular Member


Date Joined Apr 2015
Total Posts : 239
   Posted 6/8/2015 11:39 AM (GMT -7)   
lymefight- unfortunately, I was diagnosed with their late stage or chronic lyme. since I believe my bite was last summer, too much time has passed to be a new infection. But my son on the other hand hopefully avoided what I have to endure now. I hope everything works out with your daughter!

stacestar
Veteran Member


Date Joined Jan 2014
Total Posts : 532
   Posted 6/8/2015 8:27 PM (GMT -7)   
hi lymefight,

I can relate to that anxiety. My son was diagnosed with lyme in Jan. of 2014 (almost 4 at the time), after 3 1/2 months of bad symptoms and us trying to figure it all out. Since it was then winter I didn't start to feel the anxiety until spring. And then boy did I feel it. He was on antibiotics, so that helped calm me a bit, knowing he be covered if, God forbid, he was bit.
But I remember looking out at our big, beautiful, heavily treed back yard, and feeling like it had all been spoilt. Like, I could never relax about him just being outside, climbing trees, running around again.
Needless to say, I doused him with tick repellent (non-deet) everyday; still do. He smelled, reeked of the citronella smell, b/c of it.

I love gardening too! Have had a large garden for about 6 years (that he would help me with since he was a toddler). But last summer…no garden. Only some tomatoes in containers on our patio. I couldn't do the garden, I was too scared to. I would think to myself, maybe that's how he got bit…mice in the garden carrying ticks and them dropping off into the garden, the birds who land on the garden beds carrying ticks, and so on. Before the lyme, my son would walk barefoot with me in the yard, the garden, sit in the dirt, and so on, like a normal kid enjoying the spring and summer.
But last year not really, no garden, no sitting in grass, dirt, etc.

And, then I realized…I can't be afraid so much and live that way. Regardless of my anxiety and keeping him away from some normal play things (climbing the tree, the gardening), he could still get a mosquito bite with an infection, or a tick regardless of my best efforts to prevent it.

When it's fresh and early on in treatment, I agree, it can be so nerve wrecking, at least it was for me, about if he might get bit, but over time, it does get better, even if just partially.

And actually, I think now he may have got bit by a tick last week, despite my best efforts for him not to. There's a mark that was suspicious so the llmd started antibiotics just in case. If this were last year, I'd probably have had a nervous breakdown and completely freaked out. Not to say it doesn't seriously bother me (b/c it does), and that I don't worry, etc., but he's on antibiotics for it, and I've learned a lot about how to try to help his body be healthy, to detox, to use herbs too for lyme fighting, etc. and I just know he's going to be ok.

Not trying to down play concern or anything, b/c as moms (and dads too) we will always worry, especially about something that we now know "can" happen (as compared to when a person hasn't gone through something and they think, "oh, it won't happen to me.") But we just, I couldn't, keep living with the constant fear of it. We have to find peace too.

It gets better, you learn that it (the infection) can be overcome, especially when caught relatively early, even though it isn't always easy necessarily. And you learn to not be (too) anxious again. I had to add that (too) to make this honest, b/c I still cringed when we were at my sister's house last month, and the kids played half the day in her wooded lot (in MI. But they all were sprayed heavily and checked over good.)
So anyway, cautious-yes, prevention methods-yes, change some things- yes. My son can't play near the firewood pile, or piles of dried leaves, things like that, but (with repellent on) he can climb his tree again, run around the yard, and also, this year we have our garden back.

I hope for you too it (the anxiety) gets better. Mine's not 100% gone, but so much better.

Post Edited (stacestar) : 6/8/2015 9:32:43 PM (GMT-6)


lymefight
Regular Member


Date Joined Jun 2015
Total Posts : 24
   Posted 6/8/2015 9:08 PM (GMT -7)   
My husband and I bought our beautiful home in the country before having our daughter for the fact that it did have a lot of trees for privacy (and lots of fruit bearing), the river we can hear 24/7, the chicken coop we have filled with chickens for farm fresh eggs, the horse pastures and acreage that would allow our children to just be creative and live life, outdoors.

And now...

I fear all the reasons we bought our property.

Even this evening... we were BBQing dinner and I was in the house grabbing dishes and she knocked on the deck door to show me her new pet BUG that she named Shirley, in her HAND was a June Bug. I felt anxious before I even turned around (knowing my daughters love for nature and bugs). Before LD I would have encouraged this, and today I was near panic attack. And that alone put into perspective how much I need to RELAX. But, I know that she would be the innocent kid to pick up a tick and watch it run around on her hand. I feel guilt for that, for teaching her that nature is ALL beautiful and kind (it's not). I taught her about why skunks spray and bees spray but never talked about insects. My garden hasn't been touched since... and I shivered when she ran around barefoot on the lawn tonight.

I know I won't dwell on this forever... and the dark cloud will clear. This fear is real (for me anyways) - especially when it impacts the little people who mean the absolute most to us.

THANK-YOU for your message, honestly thank-you... <3


stacestar said...
hi lymefight,

I can relate to that anxiety. My son was diagnosed with lyme in Jan. of 2014 (almost 4 at the time), after 3 1/2 months of bad symptoms and us trying to figure it all out. Since it was then winter I didn't start to feel the anxiety until spring. And then boy did I feel it. He was on antibiotics, so that helped calm me a bit, knowing he be covered if, God forbid, he was bit.
But I remember looking out at our big, beautiful, heavily treed back yard, and feeling like it had all been spoilt. Like, I could never relax about him just being outside, climbing trees, running around again.
Needless to say, I doused him with tick repellent (non-deet) everyday; still do. He smelled, reeked of the citronella smell, b/c of it.

I love gardening too! Have had a large garden for about 6 years (that he would help me with since he was a toddler). But last summer…no garden. Only some tomatoes in containers on our patio. I couldn't do the garden, I was too scared to. I would think to myself, maybe that's how he got bit…mice in the garden carrying ticks and them dropping off into the garden, the birds who land on the garden beds carrying ticks, and so on. Before the lyme, my son would walk barefoot with me in the yard, the garden, sit in the dirt, and so on, like a normal kid enjoying the spring and summer.
But last year not really, no garden, no sitting in grass, dirt, etc.

And, then I realized…I can't be afraid so much and live that way. Regardless of my anxiety and keeping him away from some normal play things (climbing the tree, the gardening), he could still get a mosquito bite with an infection, or a tick regardless of my best efforts to prevent it.

When it's fresh and early on in treatment, I agree, it can be so nerve wrecking, at least it was for me, about if he might get bit, but over time, it does get better, even if just partially.

And actually, I think now he may have got bit by a tick last week, despite my best efforts for him not to. There's a mark that was suspicious so the llmd started antibiotics just in case. If this were last year, I'd probably have had a nervous breakdown and completely freaked out. Not to say it doesn't seriously bother me (b/c it does), and that I don't worry, etc., but he's on antibiotics for it, and I've learned a lot about how to try to help his body be healthy, to detox, to use herbs too for lyme fighting, etc. and I just know he's going to be ok.

Not trying to down play concern or anything, b/c as moms (and dads too) we will always worry, especially about something that we now know "can" happen (as compared to when a person hasn't gone through something and they think, "oh, it won't happen to me.") But we just, I couldn't, keep living with the constant fear of it. We have to find peace too.

It gets better, you learn that it (the infection) can be overcome, especially when caught relatively early, even though it isn't always easy necessarily. And you learn to not be (too) anxious again. I had to add that (too) to make this honest, b/c I still cringed when we were at my sister's house last month, and the kids played half the day in her wooded lot (in MI. But they all were sprayed heavily and checked over good.)
So anyway, cautious-yes, prevention methods-yes, change some things- yes. My son can't play near the firewood pile, or piles of dried leaves, things like that, but (with repellent on) he can climb his tree again, run around the yard, and also, this year we have our garden back.

I hope for you too it (the anxiety) gets better. Mine's not 100% gone, but so much better.

3yo daughter has Lyme
Lyme Diagnosis: 5 June 2015
Amoxicillin 700mg/day + vitamins, grapefruit extract, probiotics

CaliLyme
Regular Member


Date Joined Mar 2013
Total Posts : 133
   Posted 6/9/2015 1:35 PM (GMT -7)   
Hi lyme fight.

MY DD 11 has lymes. We have been treating for 2 years. She's doing great. On herbals and immune builders.
I know how you feel. It is so hard not to worry. When she first got diagnosed I was a complete basket case. Kids do and will heal;))
A good friend of mine said worry is negative prayer. So I try so hard not to worry. I try to read positive things on the Internet about people healing from Lyme. This board has been wonderful and is full of great people.
I do think A little worrying is okay because it drives us to search for a better life for our children.

LindaLew
Regular Member


Date Joined Sep 2012
Total Posts : 344
   Posted 6/9/2015 5:38 PM (GMT -7)   
Lymefight, it sounds like you have a wonderful living situation in the country! There is a post in here about clothing treated with Permethrin, I think you can treat your own clothes also. Maybe that would help you feel less threatened by the tics. I felt the same way for a couple of years after being diagnosed, then I decided I had to be out there anyway. It must be so scary with a child with Lyme.
Lyme symptoms since 1988. Sat on the wrong log when bicycling, in 2 weeks I had classic symptoms with cardiac, neuro, and mental status changes. Was hospitalized at week two for possible RMSF, tested negative. Classic bulls eye rash but the ID doc did not think it was related to my symptoms. Malaise and fatigue for 2 years, diagnosed by ID MD in Atlanta who went to Harvard and treated Lyme.

GreenBlue
Regular Member


Date Joined Aug 2014
Total Posts : 209
   Posted 6/9/2015 7:11 PM (GMT -7)   
Lymefight- I'm right there with you. We live right up against a large nature preserve with trails through a beautiful meadow and the woods. My son loves it all beyond anything and I'm a total wreck. I sometimes even see those nasty buggers hanging on to the tops of the long grasses at the edge of the trail just waiting. It sends me into a panic every time instead of enjoying the beauty around me.

Stacestar- thank you for your post. You are right about the way you are thinking about it. I will get there - I just need to let go of the fear. So hard to do.
Symptoms started in 2012
Discovered severe mold exposure 2012-13
Diagnosed w/ Lyme & Anaplasmosis via IGenex July 2014
Symptoms: Fatigue, migrating joint/tendon/muscle pain, constant arthritis in hands/feet
8/14: Doxy 200mg
9/14: Doxy 200mg + LB Core herbs
10/14: Omnicef 600mg+Zithromax 500mg+Plaquenil 500mg+Nystatin = started to get some relief!

stacestar
Veteran Member


Date Joined Jan 2014
Total Posts : 532
   Posted 6/9/2015 8:59 PM (GMT -7)   
lymefight and greenblue, you're welcome of course!

when I read your post, lymefight, about examining every speck, being afraid, and not wanting to be outside, I could so relate. It helps to know we're not alone in the things we're going through, feeling, etc. (that goes for those new to lyme and those who have been in it for awhile too). Besides the advice and information here, the support/community and encouragement I've felt in this group through the last year + (even when I'm not on here as regularly lately) have helped me so much, so I wanted to share too. Thank you for the post to begin with.
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