glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
BEA!!!!
PLEASE read the link that sammy posted above about the strongyloides! A DISSEMINATED HYPERINFECTION in an immunocompromised patient takes MUCH MORE treatment than a short course of any antiparasitic such as Ivermectin.
These parasites lay hundreds of thousands of eggs a day and can infiltrate and disseminate all of the organs, tissue and lungs!!
I read in the news a few yrs ago about a man in a hospital I think it was Michigan who presented with symptoms like Steve, and was on life support. They somehow discovered he had this parasite, was tx and he pulled through.
This could be why the abx are not working. Would be worth a try to bring this up to the doctors. I would be VERY strong about it until they hear you.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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On my way to the hospital now. Talked to hubby's nurse. She sounded about as relieved as I am. Hubby only had a couple more episodes of tachycardia (rapid heartbeat) overnight. His fever has gone down -- usually does overnight, but still a big relief.
This time it will not be just me and a bunch of doctors. I will have people with me in body and spirit at my meetings.
Was looking up some credit card balances and had to type in some of hubby's passwords -- they were lone ranger and superman. He is really a superman but he is not alone anymore.
Actually I think the crash cart can be useful in my arguments. I really feel like this is not just his battle but for all lyme and tickborne patients everywhere. I have done everything they have asked so far and now it is time for them to at least meet me halfway.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Prayers for you and Steve.
Posts: 520 | From Maryland | Registered: Jan 2007
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Onward and upward Bea!!!
We are all here for you and Steve.
Sending hugs and strength.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
You go Bea!!!!!!!!!!!!!!!!
Go to the very top if you need to.
At the top,they may feel that a lawsuit could ensue if they do not comply with your wishes and try more tests and treatments.
I am still praying and believing that God will heal Steve and give you and Steve all that you need to get through this.
-------------------- 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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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Still praying that God will be with you today as you take this up with the doctors.
Praying for strength and healing. Wisdom and open minds for the doctors.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Bea, Steve is Superman and you are Superwoman! The love, dedication, and advocacy you give touches the heart.
I agree with you about the relevancy of having the crash cart in the room. Thankfully it was not needed and hopefully will not be, but the fact that they had it there is significant.
I am glad there are small improvements. I hope they continue.
Imagine a force of Lymenet members standing strong with you. Prayers continue.
Posts: 4682 | Registered: Oct 2000
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Really sounds like the parasite angle could be valid. What harm could it do to try anti-parasitics? I'm sure you will tell them his history with that.
So glad to hear there has been some improvement!
You're amazing Bea! Keep up the good work and try to take care of yourself. God bless.
Posts: 2541 | From Northeast | Registered: Jan 2008
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Bea, We have not had a chance to talk much but I just wanted to let you know how inspired I am by your strength, courage and advocacy, and how much I am thinking of and praying for you and Steve. You are so correct - what you are doing is not only helping Steve but Lyme patients everywhere.
Posts: 1737 | From Virginia | Registered: Aug 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Good thoughts, prayers up. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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I really feel like this is not just his battle but for all lyme and tickborne patients everywhere. I have done everything they have asked so far and now it is time for them to at least meet me halfway.
- IT IS INDEED!!!
-What sammy and glm posted could be the key!!
God is with you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You go, Bea! Go to the hospital administrators, if need be, please, please. We're all rooting for you both.
xoxoxo
Posts: 3792 | From around | Registered: Mar 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Praying, praying praying for you to have strength to stand up to the powers that be so that Steve can get the help that he needs.
posted
I think it would be be a good idea for ALL not post passwords for our credit cards,debit cards, etc. We don't need more headaches or hardships Sending prayers
Posts: 315 | From USA | Registered: May 2005
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posted
Bea, I almost died of respiratory failure as I think you know. I am now fairly sure it was due to babesia duncani, after reading a lot more on babs and respiratory failure and how it presents.
I am so sorry you're going through this. My case looked utterly hopeless and I'm still alive. I hope there is still that one small glimmer of hope for Steve too.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
ymeCFIDSMCS, that is encouraging! What turned it around for you? (I'm not trying to high-jack the thread, only shed light here).
Posts: 3792 | From around | Registered: Mar 2008
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posted
I did a bunch of different things, Rumi -- nothing that Bea doesn't know about (we've emailed privately about similarities btwn her husband's case and mine) -- and it also was a matter of being completely bedbound, immobilized, using a ventilator to assist breathing like Bea's husband, and unable to speak for months and a very slow recovery as I fought every day for my life. I am not back to where I was before this. I barely got out alive but it does give me a glimmer of hope that Steve could too. I know they have both been fighting so hard for so long. Will gladly post another time but don't want to hijack this thread, as I hadn't been on here awhile and was surprised to see what was going on.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Bea, I wish there was anything anyone could do to help right now.
I want to suggest an herbal combo I'm doing now for babesia: Sun Ten's Artemesia and Tortoise Shell also called Qing Hao Bie Jia Tang.
In TCM tortoise shell is supposed to assist the herb get to "deeper" conditions -- so in other words, in that combination it helps the artemesia annua get deeper (into tissues).
It is also indicated for fever.
I have tried all of the other babs herbs but actually think the formula is helping.
I am mentioning mainly because you posted elsewhere the hospital is not giving malaria meds, which seems to leave few options but upping whatever herbs might help and I knew Steve already uses herbs.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
The pulmonary doctor has informed me that they expect Steve's heart to give out and for him to not live through the night.
The I.D. doc ordered one more blood slide. It is my understanding that if the slide is negative for babesia she will not empirically treat him with malaria meds.
Spoke to the patient advocates and they were trying to get I.D. docs at another hospital to review Steve's file. Like that is going to happen on a Friday afternoon.
Have one more meeting later today with the ethics committee.
My sister is coming to sit with me and should be here in 3 or 4 hours.
Even if Steve gets mslaria meds for his babesia it will probably be too little too late unless a miracle happens.
Have spoken to the Columbia Speciman Bank and they will take his brain and organs and tissues to test for evidence of tickborne infections.
Fever of 103.2 and WBC at 30,000 but they aren't willing to do anything outside of the box.
Signing off for now.
Bea Seibert -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This thread supplies key background detail.
For REPLIES, though, rather than keeping this older thread going, it may be best to move over to her most recent thread:
posted
Steve and Bea my thoughts and prayers are with you! So very sorry that you have to go through this. May the lord give you strength. God bless!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
If anyone was worried those passwords I posted are for accounts that have been closed. So nothing could be charged against them. We are just paying down the remaining balances.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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