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Lyme Disease
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Posted 4/3/2013 6:07 PM (GMT 0)
Hey everyone, I have just started taking zithromax/mepron in addition to omnicef and I am in incredible pain and fatigue and I am finding it really hard to function.

I have 3 kids- almost 12, 9 and 7 and we have a very active life and I am having a super hard time keeping up. I am a RN but am not working now- couldn't do it if my life depended on it. BUT, I am a stay at home mom and can barely seem to do that job. I am gritting my teeth in pain and struggling to maintain positivity. How do others do it? I am scared, scared of dying from this, scared of never feeling better, scared I don't even have lyme that I am treating and that I am just crazy!!

I am going to start getting grocery delivery but I think the biggest problem is that I am sick and tired of being sick and tired and don't know how to get over this hump of acceptance and I want to know if and WHEN I am going to feel better. Does anyone know any answers??

thanks all..
Posted 4/3/2013 7:10 PM (GMT 0)
Being a stay at home Mom is a full time and HARD job. Take it easy. You don't need to keep up with the kids all of the time. Even non-lymies find that hard to do!

I have a 12, 7 and 5 year old. On bad days, I tell the kids that Mommy is just not feeling well and I can't do what they want me to do. I may say "Let's have a movie night" and the kids get popcorn and a movie while I rest. Or they play without me. If help with homework is required, my oldest helps the younger one.

If I am not able to make supper, we may have a picnic. We will have fresh pre-cut fruit & berries, cheese, pita bread, humus and a pre-roasted chicken. Nothing that I have to 'cook'. They make 'sandwhiches' out of this and consider it a special treat.

There is usually enough chicken left over to do 'chicken and rice' the next day. I mix the chicken with packaged pre-cooked rice (I always have some on-hand, just in case). Can add peas and corn to get veggies too. All with no cooking.

On good days, if possible, I cook enough for two meals. That way, there are leftovers for difficult days.

Usually, I keep some frozen mini-pizzas on hand for emergencies. My 12 year old takes care of that.

Even if you are on a special diet, these ideas can at least work for their meals.

I am sorry that I can't say when you will feel better. But you will. You're already receiving treatment and that means that you are already healing. It takes time. Hang in there. You are strong, even though you may not feel like it right now. Go easy on yourself. Love yourself the way you would love your child if they were sick. You wouldn't expect them to be 'normal'. Don't expect it of yourself. Have a bath. Get to bed early. Let the kids or Dad do the dishes. Or use paper plates. You deserve to take care of yourself.

And you are not crazy. You have lyme. It is scary. But, you are healing. Tell yourself that every day. Every day be grateful for the joy that your kids bring you. They are a blessing in your life.

I hope you feel better soon
Posted 4/3/2013 7:19 PM (GMT 0)
THANK YOU!!!!
Posted 4/3/2013 7:54 PM (GMT 0)
I am there with you! I have been sick for 11 months, started treatment 4 months ago. I am slowly seeing improvements. But I hate the bad days. I am useless on those days, housebound and it's hard to take care of my

son. When I start feeling the herx coming on I get very emotional - anxiety, depression and I cry a lot.

Sometimes this can be worse than the physical symptoms. I have to tell myself over and over that it is the disease

and it will pass.

My advice is to do the best you can, don't feel guilty. You are healing from a very debilating illness. Detoxing

with baths, the sauna and lot's of water help me also. If you need to rest, rest. I try to push through it way too much. Have your kids watch movies with you. My little guy is 19 months old and is BUSY! He loves to sit and color though and do quiet activities.

I know how scary this all is, but we will heal. I got sick 8 yrs ago and was misdiagnosed with Fibromyalgia. I never

received any treatment, my own immune system fought down the bacteria on it's own, and I was highly functionable

until it came raging out full force last May 2012. This time I have a great LLMD and I am going to kick this to the curb forever!

Hang in there :-)

Posted 4/3/2013 11:30 PM (GMT 0)
You all are great!! I can't thank you enough for reaching out and taking the time to support me in some really dark times.

Warrior- I have been treating for about 3 months now. What are you taking? I was also diagnosed with fibromyalgia prior to lyme. I guess the neuro part of lyme adds to the anxiety, dep and crying. I have these uncontrollable crying jags and that is so unlike me.

Do any of you all take antidepressants and/or pain meds to help?

Thrive- we have kids the same ages and I guess I really need to let myself off the hook, but it is really hard to do...I have an appt with the therapist on Friday. She told me to just ask the kids for help and that they would love to do it. I sure hope so!

I am trying to be grateful for all I have, even though I a going through a hard time right now!
Posted 4/4/2013 11:16 PM (GMT 0)
Hi Shadow,

I am on Doxy, Plaquenil and Ceftin. I will start pulsing Tindamax 3 days a week soon. I take a lot of

supplements to help my immune system. I also take Nortriptyline (low dose) which is to help with depression, chronic pain and sleep. I don't really know if it does much though anymore. I was on it for several years

when I thought I had Fibromyalgia and it would help me get a good nights sleep.

I have tried pain meds and they seem to leave me in such a fog, I don't like the side affects. I just use Advil.

The detox baths and sauna help relieve the pain, the heating pad too.

I definately have the depression, anxiety, irritabilty and crying spells. It's really hard. Other days I can feel fine.

My LLMD told me that is part of the herx. I cannot wait for that to be more under control.

Good for you for seeing a therapist. I am trying to find one myself. I really think it will help with my healing.

What are you taking for meds?

I know how dark it may seem....but there is light at the end of this tunnel. Have faith and hope. My husband and son keep me fighting everyday. We will come out stronger when we are well again!

 

Posted 4/5/2013 12:08 AM (GMT 0)
I had a better day today!! Oh thank God. It didn't appear like that when I woke up but it turned around a couple hours in. I upped my long acting pain med and maybe that helped. I was ready to quit everything if I had to feel this bad every day. I really needed an OK day. You know, it is never as if I ever feel the way I used to.

I am taking Omnicef 3x/week and I just added Zithromax and Mepron (pulsing). I take a ton of supplements, just added glutathione supp. (which is super gross!! I dissolved it in tea and it was tolerable), herbs, cryptolepsis, armour thyroid, paxil (for long standing depression and anxiety).

I definately think the crying spells, etc. are part of a herx b/c they are really uncontrollable and I am not a crier but I cry very easily now.

It is very dark sometimes and when there is any reprieve, it is hard to bounce back and feel super positive. My husband is being more supportive which helps- he just didn't get it and he is being more understanding..

I am just trying to focus on my healing and my kids. I don't want them to know just a sick, old, fat Mom. I have got to beat this thing and get my life back!

This support is invaluable- I love your name btw. It is the truth- we are all warriors who are fighting this.
Posted 4/5/2013 12:21 AM (GMT 0)
Hang in there Shadow! One thing that I learned from raising my kids when I was so ill was that what they remember is the good times and they understand that mom is sick! My kids will have to get to know the non-sick me, as I've been ill for most of my life and am only just now getting to the point that I can have a life!

You just have to decide that you are going to beat this thing! I decided that I just wasn't going to let this take me down or take my life! That's when I began to know that I was going to beat this. I had to decide that's what was going to happen - and now I just may have healed! Even if I'm not there yet, those buggars don't stand a chance, because I won't let them rest comfortably ever again! LOL!
Posted 4/5/2013 2:22 PM (GMT 0)
I feel like I know exactly how you feel. I just started my treatment this week (omnicef). My symptoms have always been neuro - anxiety, depression, crying, feeling faint, fatigue and just over-all feeling crummy. I have scared myself so much with all of this. Scared to take the meds, scared to herx, and scared of not getting better. I too have doubted my lyme diagnosis, even though it is a positive western blot. I feel like I may never be normal again. And then when I look at my four little children I feel even more freaked out. I too want to know when it will be over. I told my husband (jokingly) that I want to be put in a medical coma and my children too until I am fully recovered. I just keep scaring myself with every weird physical sensation. On top of that, I hate just barely surviving everyday. I too used to have so much energy and did so much with my kids. Now I do the bare minimum.
All I can say is milk the good times. When things are good, even for brief moments, really notice it.
Posted 4/5/2013 2:35 PM (GMT 0)
Thank God we have each other and this forum to give us support to get through it. I am reading Cure Unknown right now and it is riveting and there are so many stories of sick children and at least I am the only one sick right now (but I have my suspicions) and I don't have to watch my kids suffer with this evil illness.

Yesterday was OK and today is OK, and I am grateful for OK. Not being greedy...
Posted 4/5/2013 2:35 PM (GMT 0)
One more thing you might want to try is having your neurotransmitters tested. These are the things like serotonin, gaba, dopamine, etc. that contribute to depression and anxiety. If you are deficient you can take amino acids which are natural and can be great alternatives to anti-depressants. A lot of people with lyme are low in neurotransmitters- this can happen when your body is busy fighting an infection. If you want to try it without the testing you can look at The Mood Cure by Julia Ross. This can help you feel mentally better. I think of neurotransmitters as probably the last things to get healed in our body because our body is so busy fighting. Think about when you might have had the flu or even a cold before. Think about how crappy you feel mentally after the physical symptoms subside (at least for me). Your body is busy and it probably doesn't care to much whether you are happy or not.
Posted 4/11/2013 4:12 PM (GMT 0)
parenting.blogs.nytimes.com/2013/04/07/its-o-k-to-put-yourself-first/

I have an almost 2 yr old and a 5 year old and am a notorious overachiever / multitasker. Lyme's gift to me has been the realization that we must put our oxygen mask on first.
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