Topic: 1/19** Please Pray, Update, Mom's CT found a new spot!
Dekrator48
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posted
Praying for you and your Mom, sammy.
It sounds like you need an antibiotic for the infection.
Please take care of yourself!!
-------------------- 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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momindeep
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Prayers for you Sammy...poor darling...I feel bad for you.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
PRAYING!!! So sorry to hear that you are so ill!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
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Oh, sammy, I pray that your appointment goes well tomorrow, that your infection clears promtly, and that you get relief from your migraines!!
Do you have injectable Sumatriptan? Please get an rx for that, as it gives the fastest and best relief by far. It is not fun to give yourself the injection and feel strange from it sometimes, but it works the best.
Also, if you could get someone to rx IV magnesium (Infuserve compounds it), and your doc rx's it (did for me), that would help to prevent them and head them off when they start. It is a life=saver!
Also, would someone rx IM or IV ketorolac for you to do prn? It also is a life-save with the blasted migraines. That is beyond the scope of what this doc will likely do, but you could always ask. They definitely do IV magnesium though.
Feel better soon!!
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susank
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Sammy - worried about you.
Can you use a Neti pot to help with your sinuses/discharge?
Your IVIG's on schedule?
You and your mom always in my prayers.
Hope you get answers/relief soon.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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momindeep
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Hoping that you and your mom are feeling better and praying that you are improving...hope also, that sunshine and warmer weather helps you.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Sammi
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sammy, how are you feeling? I hope better! How is your mom? Thinking of you both.
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Dekrator48
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Praying for you and your mom, sammy!
How are you both doing?
-------------------- 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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Sammi
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sammy, how are you and your mom doing? I hope you are feeling better.
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momindeep
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Yes...I am wondering about you and mom too?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Dekrator48
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Praying for you both, sammy, and hoping to hear some positive news soon.
-------------------- 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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momindeep
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A little worried about you two.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Sammi
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Yes, I am worried also. sammy, please check in with us when you can.
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
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posted
Praying for you and your Mom, sammy!
-------------------- 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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susank
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posted
Also worried.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
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**Update 5/2/14**
Dear friends,
Thank you for continuing to pray for me even in the absence of my updates. I've been so very ill, every day has been a struggle.
I've missed you all and thought of you often but haven't been able to get online. Sitting up and reading for more than a minute makes me sick, so I'll keep this update short today.
My mom is doing remarkably well. She still lacks her old energy and stamina but otherwise appears to be back to "normal". She tested low on her hemoglobin and iron so she is getting iron infusions over the next couple months to increase her levels. Hopefully that will help her feel her best again.
She got her first test scan and blood work to watch out for the cancer relapse last week. Thankfully everything came back clear
As for me, things are not going so well. That infection that I had was very serious. I ignored it and tried to push through it to care for my mom for too long. I should have realized that I needed to care for myself too. Anyways, it made me very ill and even set me back in my Lyme treatment.
I am now also dealing with a flare in severe GI symptoms, my gastroparesis has gotten worse to the point where my doctor has put me on a liquid diet and I am being evaluated for Crohn's disease.
There is more going on in my life. I feel sad and overwhelmed by it all. So out of control. So scared.
Thank you for caring. Thank you for praying for me and my mom during this time.
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Sammi
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sammy, I am so glad you posted. We have all been very worried.
I am glad you mother is doing much better and that her tests are clear. I am very sad you are so sick. I am sure everything you have been dealing with over these months has caught up and taken a toll.
I am sorry you are dealing with so much at once. I hope you don't have Chron's and that things start improving for you ASAP. Please put yourself on your priority list.
Hang in there sammy. I continue to pray for you and your mom.
Posts: 4681 | Registered: Oct 2000
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posted
You continue to be in our prayers, sammy. I'm so sorry to hear that you are very ill.
I pray that God will comfort you and heal you.
I'm so happy that things are going well for your mom. Hope that continues!
Keep us posted only as you are able.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
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sammy I've been wondering how you are doing. I'm really sorry. life is tough.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Dekrator48
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sammy,
Thanks for the update.
I will continue to pray for you and your Mom. I'm so sorry that you are struggling so much.
Heavenly Father, please have mercy on sammy and her Mom. Please heal both of them completely and provide for all of their needs. In Jesus name I pray, Amen.
-------------------- 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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Sammi
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sammy, I hope you are starting to feel better. I am thinking of you and your mom and continue to pray for you both.
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Sammi
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sammy, how are you doing? Please check in with us when you can.
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Sammy .. we're still praying for you two and thinking about you. I've been worried that we haven't heard from you.
Hope you are OK.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
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**Update 6/11/14**
Thank you all for remembering us. Things are still stressful and challenging.
My mom is getting better, still struggles with energy and has to get iron infusions every other week. She also has to be careful to watch out for infections now that her spleen is gone.
She will have her follow-up blood work and CT scan at the end of this month to make sure that no cancer has returned so we could use lots of prayers for that.
I've been struggling with my health lately. GI doc can't quite pin point what's going on and how to help me best. I've had tons of testing.
We found out that my gastroparesis is flaring badly, food was still in my stomach after 17hrs for prep for an endoscopy. So now I'm on double my Reglan dose and it is not helping enough, I still vomit if I don't follow my strict diet.
We also found that I had elevated pancreatic enzymes and probably passed a gall stone at some point. That is what the doctor thinks caused all my pain problems after eating.
Oh and I had ulcers in the stomach and small intestine. I was put on a liquid diet with Carafate for awhile to help heal the ulcers faster.
I've been feeling super tired lately, like I could sleep all the time. I take long naps when I can. Still, my body feels like molasses!
I finally had my f/u appt with my hematologist earlier this week and found out my iron level was 12. Tanked. So I'm supposed to get 3 infusions over the next 3 weeks. Hopefully that will help me feel better
So much has been going on, I haven't felt well and I've kinda felt down lately.
I need to feel better so that I can get back into my old habits of hanging out here more often I miss you all!
Hugs, you all made me feel better today!
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Sammi
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Oh sammy, I am very sorry you are dealing with so much still. An iron level of 12?! No wonder you are exhausted. I hope the iron infusions really help you.
I am sure it is very frustrating to have such severe stomach issues.
You and your mom continue to be in my prayers. Let us know how her tests come out.
Hang in there okay? I am sending you a big hug.
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momindeep
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I am thankful for your update since I think of you often and your mom too. I had low iron like you and after getting my levels back up I felt way better and wasn't exhausted anymore and my depression was removed...it had caused me to be profoundly sad and depressed.
I will continue to pray for you and your mother.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Dogsandcats
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Take care, I will be praying for both of you.
I have a 55 pound doggie climbing on me or I would write more. He wants lunch!!
Hugs.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Dekrator48
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I am praying for you and your mom, sammy.
I am believing that God has good plans for both of you!
-------------------- 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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sammy
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**Update 7/19**
It's been quite awhile since I posted my last update. I hope this doesn't get too long!
My most serious concern, mom needs to have surgery again this week on thursday 7/24.
She's developed a large incisional hernia in the middle of her abdomen. The doctor is concerned because it is growing so rapidly. He's going to place mesh over it to repair the weak area in an outpatient surgery.
I don't know how long her recovery is expected to take for this. It concerns me because it is just the two of us here and I've been so sick, she's been doing most of the work again. Now with the surgery I'll have to take over and care for her and everything. It's just overwhelming to think about as I have no energy.
The GI doctor never gave me a solid diagnosis for my last severe flare up. He said that he "couldn't rule out Crohn's disease" because of the ulcers in my small intestine and my high sed rate, previous imaging, symptoms, etc. That's scary.
My GI symptoms have calmed down so now it is mainly the gastroparesis that I have to deal with. It is difficult but at least it is manageable with strict diet.
I've also had a follow-up with my bone doctor recently. Good news is that my dexa scan showed that my bone density improved over this past year. Unfortunately, my bones are not strong enough for me to have my much needed back surgery. I'll have to wait another year to see how things progress.
Lyme wise it is hard for me to know if I have plateaued or not in my treatment because I have so much stress in my life and other health issues that play a role in how I feel on a daily basis it makes it hard to judge progress.
For example, my thyroid was 9.1 when I went to my PCP last week so that may be a big contributor as to why I've been so tired.
Oh, life!
Dear friends, I've rambled on enough. Thank you for continuing to think of us when you do. Please continue to pray for us if you can.
Please pray for my mom on Thursday as she has her surgery. Pray also for her doctor, and the medical team that will be caring for her. That she will recover quickly and completely without any complications.
*Hugs* and blessings to all our friends!
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Sammi
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sammy, I am so glad you posted. I was thinking of you today and I was going to post.
I am sorry your mom has to have surgery. I am glad it is outpatient though.
I am also very sorry things have been so challenging for you on so many levels. You are dealing with more than anyone should have to. A TSH (I am assuming that is the test you had) of 9.1 is very high! This alone will cause multiple symptoms. I hope you were started on a thyroid med. It can take some time for it to help. Thank goodness you were tested before it got even worse.
It is encouraging that your bone density has improved some. I pray it will keep getting better.
I continue to pray for you and your mom. I hope that her surgery and recovery go well. I really wish you had people to help out.
Please post when you can after her surgery so we know how you are both doing. Hang in there okay?
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Dekrator48
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I am praying for you and your Mom, sammy.
Thanks for updating us.
It sure does sound like you need some T3 or a combo of T4/T3....not Synthroid which is only inactive T4. No wonder you have no energy.
I listened to 14 hours of presentations during the online Thyroid Summit.
The presenters I listened to recommended that one's TSH be 0.1-1.0.
Unfortunately, many Drs only look at the TSH level, which they said was so wrong and almost worthless.
I hope they are checking your free T3 and free T4, reverse T3, etc also and not just your TSH.
Jonathan Wright MD said that the most relevant test was the Free T3 because it is the loose, unbound and available thyroid hormone.
Have you had the TPO and TGA antibody tests to check for Hashimoto's Thyroiditis?
Praying for you!!!!!!
-------------------- 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
"poppy" just posted a thread the other day asking about you. I had really been wondering how you and your mom were doing. So happy you checked in with us!
I've been praying for you and will step it up a notch! I will pray especially for your health and your strength as you care for your mom and for yourself.
Please DO speak to your Dr about that TSH!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
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I wish there was something I could do for you. so much on one plate.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lpkayak
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Thinking of you both. Seems u should prioritize correct meds for thyroid. It might make a big difference for both of you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dogsandcats
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posted
My goodness you have a full plate-
May God's angels continue to surround the two of you and strengthen and heal you both.
Hugs....
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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momindeep
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Awww...will continue prayers for you Sammy and thanks for posting the update. Sorry for your troubles, I really am.
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Sammi
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sammy, how did things go today? Still praying!
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
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**Update 7/24**
Thank you so much for thinking of us and praying for us. My mom's surgery went well this morning.
The doctor found a bunch of adhesions and "gunk" from her previous surgeries and complications, he cleaned that up and looked around inside her abdomen to make sure that everything was OK before closing and all was well.
She's not allowed to lift Anything for 2wks and then she can't lift anything over 15lbs until 6wks. She's bummed about that.
Right now she's in a ton of pain, her medicine is not keeping it under control well. She's having trouble moving and resting.
Please continue to pray for her as she heals. And for me as I try to take care of her and myself!
Thanks so much Posts: 5237 | From here | Registered: Nov 2007
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Sammi
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sammy, I am glad your mom's surgery went well. I pray she heals quickly with little pain and that you both get enough rest.
Please take care of yourself.
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Dekrator48
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I am praying for both of you, sammy!
Thank God that your Mom's surgery went well.
-------------------- 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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payne
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sammy, we are pleased that your mother has overcome again, many of the trials and test of this day and age health issues.. We praise and find comfort In HIM daily, He waits for US.. in our daily path,
He is already sitting on a stump looking back down the path. thinking where is that child of mine ? could they have become lost, He is a jealious Lord and wants you and wants to be OUR LORD. I take this as Good news ! one of the Brighter reads and find in my day also
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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LisaK
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I am praying for you both!!! GOd bless!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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