posted
I am just beside myself. I've been treating for a year and am not getting better. I tried oral antibiotics but my gut health is terrible (not because of the meds but the actual sickness). Cannot stop losing weight. It isn't a ton all at once but a steady decline. I am smaller than my 13 yr old niece!
Been doing cowden and almost finished with it.
I am a burden to my entire family and I see no way out! I've been ill ever since my son was born nearly five years ago and every year gets worse. I've never really been able to enjoy my son and now I'm stuck in the bed missing out on his childhood. I feel like my heart is being ripped out and he is slowly being taken from me.
I can never get this time back!
I think it may be easier for him to lose me now before he gets any older. I know this is wrong thinking but its tough when you try and try and nothing!!!
I want to try iv treatment but cannot afford it.
I am totally heart broken and feel like god has left me. I know he hasn't and he loves me but my child needs his mommy.
Please please pray for me. I need hope. I've lost all of my hope. Thank you guys for listening.
Posts: 415 | From USA | Registered: Jun 2012
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Thinking of you and sending positive thoughts your way Messa.
It's the funniest thing, sometimes what seems like the hard times in life have a beauty all their own and bring a family closer together.
Might not happen right away but down the road it'll be the shared memories of the good and the bad and weathering it together that make a family, well, a family.
Don't give up.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6147 | From Columbus, GA | Registered: Jul 2004
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posted
Messa, it's true that we all lose time when we're ill, but my opinion is that a) we also learn things during this time, and b) we still might be able to do small worthwhile activities, and c) we gotta have patience with this process. Each of us is unique and we need to find out what's going to work.
I have seen a lot of people come very sick to the support group, and then, with the right treatment for them, they get better.
My opinion from reading this is that you're not getting the treatment you need, for the infections and for the weight loss situation.
Are you seeing a good LLMD? I think you need to. They can bloodtest you as well and see your blood chemistry and that can also help them figure out treatment.
I wouldn't advise jumping to thinking about the most expensive way to treat - ie IV - we don't know at this point if this is what you need or not.
Instead of thinking negative, I suggest you start thinking some positive affirmations, like I am going to find someone I can work with I am going to explore more options I am going to get better bloodtested I am going to learn what to do to turn around the weightloss I look forward to feeling better in the future, etc etc.
You choose the ones that feel right to you - these are just some examples.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Messa, sometimes the evil of this disease causes so much pain and confusion that giving up seems the answer----but it's not. I'm sorry life has so many rough parts for you right now.
Praying that God gives you peace and hope right now.
Father, this midweek point must have been difficult for you as you knew the crowds and the cross we awaiting. You know each of us because you experienced the turmoil and pain yourself.
Messa is struggling so this day. We see in the distance a time with more comfort, less pain, clearer thoughts. Help her to know that you love and care for her. Lift her up and fill her mind and heart with hope.
From experience, just two nights ago, the darkness of pain and feeling like a burden mademe tell my husband that this weak and bedridden shell of a life might've it. He said he was sorry and that he was willing to take any time he could get with me, no matter what.
Feelings seem to have more lows at times with this confounded beast of Lyme, so just acknowleging that sometimes is where to start. I've found that the topsy-turvy aspects get to me, too. I've started keeping notes in my calendar to help my addled mind.
Today's entry: Little sleep again; insomnia stinks. +Was able to do over half of my morning pt. +Was able to eat lunch w/hubby. -Fatigue hit in commissay. +Spent time with talking when daughter got home. +Back pain better than yesterday.
Messa, think of the plus and minus parts. Yes, sometimes it's overwhelming. Let it out and talk here, for most of us do, unfortunately, walk in the same path as you.
BTW, I'm unable to eat much right now do to meds and supplements, so the steady decline of weight is here. If I really go slowly, I can sometimes do soup, some broth, yogurt, or peanut butter. Not always.
Take that child of yours and hold him kn your arms. Play a board game, read a book, color a picture, make a decorated craft, write or tell him a story, etc. Those can be done on the bed or propped up on the sofa. He needs and wants you there.
Hope your heart is lighter. Stay the course.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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posted
Oh Messa-I have had days like you are describing. I have three children and it can be so hard. And this disease is frankly very depressing.
But, you have to stay your course. Your son needs you! And you can get better. Do what you can do with him, as mentioned above. Give him your undivided attention. That is what children want really.
They want us to listen without interruption, pay attention to their stories, etc. That is what I try to do with my own children. Yes, there are many things I can't do right now. But I try really hard to focus on what I can give them.
It is really hard. I get it. But you will make it through these hard days. Hang in there. You can do it
Posts: 238 | From new england | Registered: Feb 2013
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Don't be so envious of IV either. Orals didn't help me and neither is IV. Everyones got a different path. Rife, Ozone, ABX, Salt C...
Droid, the sad thing is that my dr here in my state (dr I have to work through, not my Llmd but Lyme friendly shall we say) told me if I do not respond to treatment then I do not have Lyme. So.....I'm having to deal with that too. Ugh!
I really want to see the positives. Thank you again everyone.
Posts: 415 | From USA | Registered: Jun 2012
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posted
Hang in there!! My mother was ill a lot when I was growing up. (twas Lyme, if you ask me) but it never changed how I felt about her. Somehow we managed.
We kids learned to take up the slack, washing dishes, etc when she was unable. I'm sure it made all of us stronger and more self-reliant.
Keep searching for the right doctor, the right combination that is right for YOU.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying for you, Messa!!
Here is a link where you can listen to positive, encouraging music to uplift your soul!
After you click on the link, scroll over the heading "Music Room" and then click on "Listen Online".
You will make it through this! Your son loves and needs you, even to just tell him, "I love you!
I know a friend of my sister's that was sooo sick from undiagnosed lyme. She looked like she could die anytime. She had terrible tremors and was constantly in motion, unable to stop moving and sit still. She has many, many other symptoms.
She is about 3 months into treatment and she was able to do laundry and clean house this week. She is not having the constant tremors and the constant legs in motion anymore.
Yes, she has a long way to go, but if you knew how sick she was, you would not have believed that this improvement was possible.
There is always hope! Do not ever give up!
Our help is in the Lord!
Praying!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
My first 2 years after diagnosis were the worst,but it got better. I am hoping my body can deal with the infection by itself, but every time I get a sniffle, I do panic a little and think,"dammit,now what..." Give yourself a pat on the back for hanging in there to date. Choosing a doctor is like choosing a dance partner--find the one that fits you, and doesn't stomp on your feet.Don't try to do it all for your kids, be honest and let them do the dishes or handle putting the laundry in the wash or dryer. Say goodbye to perfect and let things be.Being healthy is more important than being perfect. Keep writing us here.
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
It sure is!
Posts: 415 | From USA | Registered: Jun 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I'm praying for you Messa.
I have a 3 yr old son and 15 yr old daughter. My 3 yr old only knows me as being sick.
They are what keeps me in this fight. If I wasn't trying to get my life back to be a healthy mom for my kids, then I would just stay in bed and call it a day.
If your son lost you, he would be scarred for the rest of his life.
You are still able to love him and hug him...that's what he needs...a mom...and that's what he has.
posted
Messa, also ask about coinfections. That could be why you don't seem to be responding.
May Psalm 56 be an anchor for you right now.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Messa, I totally understand how the disease itself can mess up your gut. This is an awful manifestation of this disease and so poorly understood by so many. I would suggest consulting with a LL naturopath if at all possible to help address this. Google SIBO to see if that could be one of your problems. I would also suggest considering the following supplements:
As for you being a mom who is sick, try to turn your thinking around a bit as far as missing out on his childhood. He is still a little guy and there is sooo much you can do with him, even if you are stuck in bed! You can have him come and join you to do puzzles, fingerpainting, crafts, book reading, poem writing, listening to music, singing karaoke, watching funny movies and just having conversations.
Just because you are sick doesn't mean you aren't a good mom. The MOST important thing for kids to understand is how much they are loved and valued. That is what they will ALWAYS remember.
True, you will never get this time back and they grow up so fast. But that's EXACTLY why you need to focus on what you can do with him rather than what you can't. So what, you can't be his soccer coach. But you sure as heck can help him with a craft/puzzle, etc. and still have fun together.
I understand the frustration as far as lack of progress with treatment. Please don't let that translate into your son is better off losing you now than later. No kid is better off losing a parent, sick or not. You need to stick around despite the frustrations of it all. You are his only mom afterall.
I will pray for you. But in the meantime, have your little guy climb into bed with you, give him a big hug and watch a good Disney movie.
Best of luck and health to you.
Posts: 1885 | From here | Registered: Jul 2012
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hi Messa,
Please hang in there your little on needs you.
Just being there for him and perhaps if you can read a story or do a puzzle. It is the little things that matter.
If the activities are too much for you, then just talk to him and hug him. He knows you love him and that's all that matters.
Good luck and we are here for you.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Mesa...not able to read all you wrote due to health.
Just know I am thinking of you and I pray God blesses you with what you need the most first.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Droid, the sad thing is that my dr here in my state (dr I have to work through, not my Llmd but Lyme friendly shall we say) told me if I do not respond to treatment then I do not have Lyme. So.....I'm having to deal with that too. Ugh!
.................................................
That's what uninformed doctors say to us, and we have to run the other way, to a Lyme-literate doctor for some real testing for Lyme and co-fections and some real treatment.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thank you guys. Saw dr today and he wants to step up my treatment protocol. He thinks it sound like a bad case of babs.
Mepron, azithromycin, Art and something else. Cannot remember at this moment.
My insurance does not want to pay so asking for more prayer. Thank you guys so so much for the support.
Posts: 415 | From USA | Registered: Jun 2012
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
hello Messa, you are top of my prayers, God is in charge, things will occur that no one ever could believe or inmagine... 1st find a true LLMD that has compassion and God on their team.. my life doctor of 56 yrs, nows my gate (my walk) and he said he is glad i found a LLMD that can help me ! 2nd Obey the Lord like a soldier, pray 24/7 as in from your lips through out the day let God know your voice. OBEDIANCE = GRACE. 3rd, family (yikes), find the ones that have the compassion you thrist, may be an aunt/uncle. even a young neice or friend.. Convincing family to pull for you will wear yourself out.. stop pushing them and let God bring support from even strangers. a church is where compassion is, go. so glad you have a husband that sees you are in troubled waters... beating lyme and becoming stable or 2 differant mind sets,, as we that are deep in lyme, find that just to awake, or go to the store, or sit infront of a cup of soup is a mark.. adjust you life to hit simple marks .. find away to be paticent with this there is no race track answer or we all would be there.. stay in the WORD, push on a smile no matter what you face.. eventually you will find smiling brings joy, I hate this disease so much, and I know the lord has an answer. I have no one, my family can;t help me, (the way we need to be helped) the Lord sits daily with me and we talk, just talk.. I just lost my brother as you know, as you prayed for me.. prayers get answers in God's time not ours, and I am praying for you joyfully tonight... thats right you have brought me joy Messa, in this storm to be able to lift your name and your husband to God;s leadership, life with lyme will make you find new limits of your own self - I have been and have heard of the nightmare this dose to the greatest people.. odd many lyme folks if not all were very outgoing and compassionate folks.. the road will become hard and the storms will be dark and right when you think you have been beaten to pulp, it will beat you again.. but, fight this and find Victory. God loves to bless you, surrender to His will and find a spot in His plan and begin to recover... Obediance in His word as changed mine if it takes the rest of our lives. it is late we buried my brother today, good night, but, as i rest Jesus will hear our voices here as many jion in prayer and when we wake our voices will carry on.. carry the cross daily. wayne just a God fearing man.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
Thank you so much Payne. You are so thoughtful and merciful. I know god will bless you because of your love and mercy toward others.
I pray for extra special peace for you and your family during this time. I understand. I lost my sis n law (she was like a real sister) few years back. Things will get better and The Lord is right there beside us even though our hearts may be breaking.
God bless you tonight, messa
Posts: 415 | From USA | Registered: Jun 2012
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
Awesome share Messa.. put God first in everything you think and do... Jesus was a beautifull man..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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