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» LymeNet Flash » Questions and Discussion » Medical Questions » Update #13 -- Prayers and Get Well Wishes Requested (Page 3)

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Author Topic: Update #13 -- Prayers and Get Well Wishes Requested
seibertneurolyme
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Update #11

Continued prayers needed.

Have been told that Steve is too critically ill to even be transferred to another hospital room. Cant take the ventilator in the elevator.

As they say there are none so blind as those who will not see. The pulmonologist is convinced that lyme is a rare disease. Doesnt believe that Steve could be so unfortunate as to contract 3 rare diseases lyme, babesia and ehrlichia.

For now he is stuck with the docs he has.

If he ever had tickborne diseases they have been treated etc etc.

I did eventually get them to agree to do multiple bloodslides, but as we all know most microbiologists probably have never seen babesia on a bloodslide.

All we can do is pray that Steve beats the pneumonia. They are unwilling to prescribe an antiviral as he has tested negative for all the viruses they tested him for.

On a positive note Steves xrays have been stable for 4 days. He continues to run fevers and has been under a cooling blanket for almost 24 hours.Very heavily sedated today.

Steves stepmother had a cousin drive her so she could come and see him today. She has a bloodclot in her eye and cant drive, plus she is taking care of his father who has been bedbound since December. He had had several strokes and had a fall and a leg fracture and afterwards his dementia or alzheimers became much more severe. Dont think Steve knew she was here.

They stopped one antibiotic (tobramycin) yesterday and his WBC went back up to 29,000 today. But once again they are saying it could be from the change in steroid dose.

I am not giving up on Steve he is a fighter and I am sure he would like to prove the docs wrong. The infectious disease doc is not convinced that he can beat the pneumonia. Will not even agree to retest to see if the infections they have identified are gone after he receives the standard 7 or 10 days of antibiotics.

The pulmonologist is convinced that Steve has some underlying fibrotic lung condition and he hurt himself by taking some herb or nutritional supplement or some medication.

Yes, he probably does have some very mild scarring from the pulmonary nodules found in 2003, but they have never interfered with his breathing.

If you cant find the answer then blame the patient or his wife. The internal medicine doc has used the munchhausen term in his progress notes.

I have given them medical documentation and medical abstracts, but there is nothing else left to do but pray for a miracle.

I cant see that a change in docs would accomplish anything. Infectious disease is the only one who prescribes meds for pneumonia and we all know how close minded they are. I did mention that the vancomycin they were giving him and the rocephin they have added (switched to that from zosyn) would treat any underlying lyme disease whether they intended it to or not.

They say they are doing everything they can to support him and there is nothing else left to do but wait.

I did the best I could but seemed to totally strike out.

Bea Seibert

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Sammi
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quote:
Will not even agree to retest to see if the infections they have identified are gone after he receives the standard 7 or 10 days of antibiotics.
[/QB]

Why on earth would they not retest to see how the infections were affected by the meds? They have to retest to know where to go from there.

I am happy there are some small improvements, and I hope there are more soon.

I am very sorry you both have to deal with this incompetence.

Prayers continue!

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seibertneurolyme
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i don't want to scare anyone into not treating a known or suspected babesia infection. ARDS if that is what Steve has is a very rare complication of babesia. Hubby's LLMD knows someone who required a heart transplant due to babesia duncani.

Regardless of the IDSA viewpoint all of us here know these are serious infections that do not go away with 10 days of treatment.

Especially in the early years Steve tried going without antibiotics and babesia treatment for several months more than once -- his symptoms continued to progress. So obviously for him doing nothing was not an option.

All I can say is do not ignore any significant worsening of symptoms or new symptoms -- especially when they relate to the heart or lungs or brain (encephalitis type symptoms for example). I know many tend to push thru a herx like Steve does -- but sometimes the slow and steady approach is the best. I know that usually ER visits are a waste of time and money, but sometimes they really are necessary to rule out serious heart issues for example.

All the comments and prayers really do help.

Bea Seibert

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linky123
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Your lymenet family will be here for you as long as you need us.

Still praying.

Take care and God bless.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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Dekrator48
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Bea,
Good news that they were able to lower Steve's oxygen from 100% to 80%.

You have done a tremendous job, and that's an understatement.

You have done everything humanly possible and more. You are such a devoted wife and Steve is blessed.

I am so sorry that you subjected to the Drs' unkind and blaming comments, even in the medical record, by those who are so closed minded and uneducated.

I will continue to pray for Steve, you and the medical team.

Big hugs to you!


Ephesians 3:20(NIV)

20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,


Romans 15:13(NIV)

13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

--------------------
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

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LymeMom Kellye
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I have been following this post for a week now and have kept you both in my prayers. I am glad for the stability and slight improvement.

But I am so darn angry! Bea you have gone above and beyond and have done absolutely everything humanly possible to make them understand and see outside the box. The research you've done and the difficult decisions you've made over the years are to be commended!

To mention Munchaussen in his records is a disgrace! How dare they? This may not be helpful right now but I want you you to know that you have always had the best of intentions and made the best decisions possible. If they would understand that and include you and your years of medical history in their staffings and treatment planning it would be so much more useful!

Continued prayers for you and Steve

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Lymetoo
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Munchhausen, huh? .. I could say something but I'll try to keep my cool!! They can just go hang!

God knows that YOU are doing everything you can to help Steve. I only wish the doctors were not so close-minded.


Hugs and love to both of you! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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debilyn
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My whole family is praying for Steve and Bea. Hang in there!
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baileypup
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I too have been following this post and praying for you both. I agree with the above poster who is so darn angry.

When my husband was in the hospital with pneumonia last year, we had to fight against the Infectious Disease doctor's preordained treatment protocols. They took him off of Valcyte, when his CMV test came back negative and he declined within 24 hours. I pleaded for them to please get him back on Valcyte. They reluctantly agreed, (thinking I was the crazy wife) even though they didn't believe it worked. All I could think of is I wanted him OUT of the hospital, so he could get the medication and treatment he needed to get better.

Bea, you know more about tick borne disease then all of us put together. That said, you will never convince IDSA docs that lyme is the culprit. All that matters is that you convince the doctors to somehow get Steve the treatment that you know he needs.

I know you've tried to reason with them to no avail. Now it's time you pleaded with the doctors to give him the antibiotics, antifungals, antiprotozoas and antivirals that you feel he needs? What they're doing is not working and they have no answers. It's not ok for them to just stand-by and not retest for infection and let the pneumonia take it's course.

Have you considered going to the Ombudsman or head of the hospital with your requests?

Is there a lawyer or someone in the lyme community that could advocate for you on Steve's behalf?

You have nothing to lose and everything to gain by demanding that they listen to you. If Steve does not recover, then they are going to have to answer to why they held back potential life saving medications.

I pray that you are guided to someone who will listen and hear you out. My thoughts and prayers are with you....

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Haley
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Still praying for a miracle Bea.
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BoxerMom
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I deleted my previous post, as I'd posted right after your bit of good news but before Update #11.

First of all, I am pleased to hear Steve's oxygen requirements have decreased. I hope the trend continues.

As for doctors, I'm so sick of their disrespect toward ANYONE who demonstrates medical knowledge beyond what they have acquired. They're even like this with other M.D.s!!

Again and again they place arrogance and limited thinking over the needs of patients. Their poor, fragile baby egos!

As for blaming the patient (or the spouse!!) when the case is too challenging, that is the crux of the history of medicine. It is proven wrong every time. It is the height of doctor arrogance. You'd think they'd want to break the pattern, but I guess "saving face" in the present situation is more important. Unreal.

I am so sorry for the disrespect displayed toward you and Steve. It is reprehensible. I wish you could bring suit, but you have your hands full, and nothing would come of it anyway. Doctors have way too much power.

We are all praying hard for both of you. You are an incredible spouse, researcher and advocate. Better at critical thinking than most of the docs you've seen.

We're all fighting for Steve. And from everything I've read about him, I can definitely see him fighting this off to prove his physicians wrong!

Hang in there.

Much love,
BoxerMom

--------------------
 - Must...find...BRAIN!!!

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BoxerMom
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http://www.stopticks.org/ticks/qfever.asp

I was concerned about Steve's more recent exposures to dog ticks. I searched various combinations of 'pneumonia dog tick tick-borne infections.'

Q fever (above) and Tularemia (below) were common results.

http://www.nlm.nih.gov/medlineplus/ency/article/000856.htm

Mycoplasmas, too. Various subspecies. Many seem to present as pneumonia. He was likely tested for Mycoplasma Pneumoniae, but I don't know if the test would cover uncommon/unknown strains spread by ticks.

I'm an obsessive researcher. I couldn't help myself. Maybe this is another route to go.

With love,
BoxerMom

--------------------
 - Must...find...BRAIN!!!

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beaches
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I am absolutely appalled that the term "munchausen" appeared in your husband's medical records. I can't even imagine how devastated and outraged you were to find this out.

In my opinion, this term is bandied about by physicians who feel threatened by the spouse/parent and *think* the spouse/parent has a bit too much medical knowledge for their liking/comfort, so they state this in the patient's chart. It is a very passive-aggressive maneuver to cast doubt on what the spouse/parent is stating regarding the patient. Ironically, munchausen has no factual basis in psychiatry so the fact that physicians are still permitted to use this term is downright outrageous.

As Boxermom stated, there is so much disrespect amongst doctors towards people who possess medical knowledge beyond their realm of expertise.

What these physicians fail to realize is that people like you have had no choice but to understand medicine "under fire" due to circumstances. No doubt you have spent an inordinate amount of time doing research on your husband's behalf for so many years. Physicians should respect this, not mock it.

I continue to keep you and your dear husband in my prayers. Perhaps more importantly, I am praying that there is a doctor who will break the mold of those before him and with guidance from above will forge ahead with a greater understanding of what Steve requires to regain his health.

You are an amazing advocate and an inspiration to so many here. Please stay strong and do your best to take care of yourself (easier said than done).

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Rumigirl
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Bea, I'm glad that they were able to reduce his oxygen.

But I am beyond incredulous that they refuse to retest for the pathogens they found before. And that they removed one abx and refuse antivirals---not to mention refusing to consider TBI's.

I was thinking also that you should talk to a lawyer. But as someone said above, you could start with a Patient Advocate or Ombudsman. But if that doesn't get swift help and a turn

around on some of these issues, definitely talk to a lawyer. If they know that a lawyer is looking at what they are withholding, they may be more likely to hop to. Do they really want a malpractice suit??

BoxerMom has a really good point about what he may have gotten from his recent tick bites. The only thing is, the tests they do in the hospital aren't likely to be the best, however, they should be done. Of course, the problem is their recalcitrance.

When you speak to the Ombudsman/Patient Advocate/lawyer, also address the negative comments in his chart, esp the Munchhausen comment! That's an outrage! What, they think that that is what has caused him to be this sick?!!

You could also give the drs an article(s) about Babesia written by the IDSA guys---Steere, et al. They've been on that bandwagon lately. Of course, ID will think that "it has been adequately treated." But what about the recent tick bites since all the tx??

Please don't skip over getting the help of a lawyer or Patient Advocate, etc., as it may be key. Not that you are skipping over anything at all!!

Blessings to you both. May you prevail, and may Steve recover well. We are all standing behind you.

PS Is there anyone who can come and support you in person? You really need that, if there is any way it can happen IMO. The stress you are going through is enormous.

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beaches
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And I hate to say this, really I do, but you could "break down" in front of the docs, throw yourself at their mercy, cry and beg them to do what you think is appropriate for your husband. Ask them if it would really hurt at this point to give him an antiviral/etc.

I am a strong woman and a good advocate (and you certainly far exceed that definition). I have NEVER let "them" see me cry. I have always kept my emotions in check and focused on the logic of it all. I suspect you are very similar to me in that regard. And for whatever reason, that is not seen as strength of character, but instead munchausen's or just being a bit$h.

I just HATE saying that you should break down in front of them for so many reasons, but desperate times require desperate measures. You have to do what you have to do.

Godspeed and God Bless.

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philly78
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Oh Bea...I don't even know what to say. I'm sitting here crying as I read all of this. Like others I am angry at the doctors dismissal of your suggestions. I am also embarrassed. Embarrassed to be part of a health care industry that would have individuals who have the audacity to claim munchausen in a situation like this. What nerve!!!

You know why he wrote that? I'll tell ya why he wrote that....to cover his own incompetent ass because he cannot explain what is going on.

I just don't get it. The doctors don't know what the cause is yet they dismiss TBI's as being the source. Why? What is the logical reason for doing so? SOMETHING has to be causing this. I just wish they would listen to you.

Not sure if you had mentioned this to the docs but ehrlichiosis can cause pneumonia and severe respiratory failure. I found this......

"Ehrlichiosis can cause pneumonia and fatal respiratory failure.62 63 64 Cough is present in 39% of the cases, and sore throat and pharyngitis are reported in 22 to 33% of the cases. In 75% of children and 39% of adults with ehrlichiosis, pulmonary infiltrates are present on the chest radiograph. ARDS is reported to develop in 11 to 18% of the patients"

I'm no expert but this certainly seems like a possibility.

I'll continue to keep uou and Steve in my prayers

--------------------
When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal.

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lax mom
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At one point I had to tell my husband's Dr's that I wasn't going to let them wait until they did an autopsy to find out what was really going on...that got their attention.

There is a lung form of Tularemia that also causes fibrosis and pneumonia.

http://www.cidrap.umn.edu/cidrap/content/bt/tularemia/biofacts/tul_clinsynddx.html

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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seibertneurolyme
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Actually there is an outstanding test for tularemia -- from Friday I think. That is just about the only thing that has not come back.

If Steve ever comes out of this I wouldn't be surprised if he doesn't remember this doctor meeting. Meeting time was moved from morning to afternoon and then the meeting room that was supposed to be used was not vacant so it was me and 2 I.D.docs, the pulmonologist and the general medicine doc standing around in Steve's hospital room having our discussion.

And yes I did break down in tears more than once. I had typed up my statement and gave them each a copy. verbally went over most of the points. Gave the nurse all of the medical documentation to include in his chart after the meeting.

As a last resort I gave them each a copy of the flash drive from April when Steve had the darkfield microscopy done. 2 of the 4 kept their copies -- who knows if they will actually look at them or not.

I had thought there was supposed to be a social worker at the meeting but that didn't happen.

All of the respiratory therapists I have asked say they think that even sedated patients can still hear but they can't say whether or not they remember. Not really sure if it is better for Steve to hear them say things like he might be on a ventilator for life or might not be able to get over the pneumonia. But at least I hope he knows how hard I tried to get them to listen

The meeting ended with the main I.D. doc saying that I had my opinion and she had hers.

I honestly haven't decided what if anything else to do at this point. Checked into a hotel last night to get caught up on sleep, but am no closer to knowing how to proceed.

Leaving for the hospital now.

Bea Seibert

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tickled1
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This is so unfair. I hate that we are at their mercy and have to endure their abuse. How dare they say that about you! My heart breaks for you. God bless you both. Stay strong.
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feelfit
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Wow. Bea, don't let any doctor- anyone for that matter, tell you that you've kept Steve sick!! Most of us would feel incredibly blessed to have a spouse as dedicated to our health as you have been to Steve's.

How can doctors make these won-ton comments/opinions, when they haven't lived with Steve or seen his decline when he has gone off meds. Only you and Steve would know that.

As others' have suggested, you need an advocate. A social worker or Ombudsman- someone who will document their refusal to at least try an anti-viral on a man that is in very serious condition.

I agree with you, it was insensitive- that's too mild- incompetent- of those doctors to make comments as they did in Steve's presence. There is the possibility, though sedated, that he could hear. Insist on an advocate.

And what of you, Bea? Who is supporting you? Is there anyone that is able to hold your hand? I have no doubt that Steve knows how you have fought for him and continue to fight for him. No doubt at all.

Continued prayers- for the both of you.

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cozynana
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Bea, I sent you a pm. Please read it immediately.
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AuntyLynn
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Bea -

You did NOT strike out! You put those little "demi-Gods" in their place! (And it makes them uncomfortable.) How arrogant of them to think that a wife does not know her husband's medical history, better than some doc who had just met him this past week.

Would it be possible for you to chuck some vitamin C down his feeding tube? (Just thinkin') Adelle davis said she used to make a C sherbert, (frozen water and crushed C), and give it to really sick patients who were too sick to eat or drink.

I am driving to Mass today to face my own Goliath in Court tomorrow ... but I will be keeping you and Steve in my prayers.

May God bless you and guide Steve back to health!

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Jane2904
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Keeping you both in my thoughts an prayers.


So sorry for the unfair remarks from the doctors. Stand proud Bea, you have done nothing wrong!

Any chance of doing a phone consult with maybe Dr. K in Washington or another top Lyme specialist?

I truly hope Steve's current illness improves.

Hugs

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RZR
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I am still praying.

When I was in the hospital early in my treatment, they took me off abx. I started getting sicker and one arrogant doctor told me lyme did not even exist in TN.

I took matters into my own hands and took the abx I had without telling them. I am not saying you should or could get away with doing this, just saying that's what I did.

Hugs

--------------------
Tick bite May 2009
Diagnosed June 2009

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Lymetoo
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Still praying, Bea and Steve. May God comfort you and surround with His love and strength.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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map1131
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Bea, everyday I read this thread and I pray for Steve's and your strength to fight the ignorance of tick borne illnesses.

No wonder those of us that have been around refer to ID ducks in such disrespectful ways.

Do not let these ducks point a finger at you. You have educated yourself for years to get to the bottom of Steve's illness.

I wish we all could be there. One, to support you and Steve. Second, to knock the ever living ignorance out of those ducks.

Lord, hear our prayers. He knows our fight and he knows our truth.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Dekrator48
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Psalm 143:8(NIV)

8 Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I entrust my life.


Lord Jesus, please show Bea the way she should go.

Heavenly Father, please also show everyone on Steve's medical team, the way they should go in order to heal Steve.

We know Lord, that we can do all things through You who strengthens us.

Lord, please strengthen Bea and Steve and renew them, body, mind and spirit, as only You can do.

I ask all of this in the name of the Father and of the Son and of the Holy Spirit. 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

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Dekrator48
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Bea,

You are not alone in your tears.

I am crying and praying for you all at the same time.

I think we all feel like this. This should not be happening.

I hope you can feel our prayers, our love and our hope.

--------------------
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

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Brussels
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Bea, so sorry to read all you are going through.

I don't know if you would take suggestions, but I would buy all the Sanum I could and just try a few (Staph, for example, Strep after, then Not, Pef....).

These are anti-infectious, would probably not help babesia but can help hit some of the infections, as he's got such a weak body now....

It's been years we do not use anything else for infections, except Sanum. They work much better than anything for most infectiouns. And still are not toxic.

Dr. K. uses them all the time, even for guys with ALS, to clear infections.You don't have to tell anyone you are giving him these drops.

I do wish no one would have to go through what you are going through. You're such a fighter and so is your husband.

My best thoughts and wishes to you and Steve.

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Rumigirl
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Bea, this saga you both are having to endure is unreal. The arrogance is beyond belief.

Please, please find a Patient Advocate/Ombudsman/lawyer---or combo, and get help from them. A lawyer particularly may knock some sense into them. As I said, do they really want a malpractice suit knocking on their door??

There is no earthly reason for them to be denying abx, antiviral, anti-malarial, etc. except their arrogance and ignorance. There is no excuse.

What happened with an Ehrlichia/Anaplasma test? Of course, we all know how inaccurate these tests can be when they are negative---esp an in hospital test. Why can't they throw everything that might help at this?? Instead of denying what can help. Preaching to the choir here.

ANd having the meeting at his bedside--with no social worker to boot---inexcusable.

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Rumigirl
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PS One of the things to stress with the help of a lawyer/Ombudsman, etc. is his recent tick bites (plural), so any "adequate treatment" from before could be rendered useless and needed again. I'm sure that you've covered that before, but with the help of back-up . . .

Also, with the help of such back-up, you could try to insist on outside consults with a parisitologist, Tick-Borne disease specialist, etc. via phone/internet. I'm sure it would be a battle royal to get any such thing, but worth it. These guys are none of the above.

You need a strong-arm back-up so badly. They won't listen to a lowly wife. %*!##! How about a good lawyer??

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linky123
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I don't even know what to say anymore about these #*[email protected] doctors. It is infuriating that you would be treated this way at such a difficult time.

You are so well-informed, well-spoken, and have persevered when most would have folded.

Though we can't be there for you in person, we can be in spirit.

My kids are on their way to youth group, will have them pray for you too.

Take care and God bless.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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kelmo
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Bea. We're praying for you. God is not absent. I think you might have to go full out Shirley MacLane from Terms of Endearment on them.
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a mom
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Bea and Steve,

Our thoughts are with you.

Janet, Sarah and Jim from Bel Air.

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a mom
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Bea and Steve,

Our thoughts are with you.

Janet, Sarah and Jim from Bel Air.

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Maya12
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Hello bea , I know I have not spoken with you much before but I just wanted to pass on my sympathy and prayers to you and your husband.

At a time like this I always like to think of the poem of footprints in the sand , God is walking with you

I have been following this thread and keep hoping for a turn for the better

You are in my thoughts and prayers

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Andie333
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Hi, Bea!
I've read all your posts but haven't responded. What I want you to know is that you and Steve are in my thoughts and in my prayers.

I pray this turns soon for the better, for the two of you.

Thank you again for keeping us posted.

Andie

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seibertneurolyme
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Update #12,

Yesterday (Wednesday) was a pretty quiet day.

Respiratory decided that the sodium bicarb they were infusing directly into Steve's lungs was not helping produce secretions but just inflaming his lungs more. Since they stopped that his oxygen needs seem to be less.

Someone from respiratory checks his stats every 2 hours. They draw blood gases at least 2 times per day and make adjustments to the oxygen levels based on that or their assessment of his stats. Think he is down to 75% oxygen now.

The goal is either 60% or 50% (not exactly sure) and then they would lower the sedation and try to switch him back to a bipap machine and take him off of the ventilator.

Chest xrays have shown no change for 4 or maybe 5 days now. WBC went back up again to 29,000 but fevers seemed lower and less of an issue.

The I.D. docs are saying that they will probably stop antibiotics on Friday or Saturday.

I am still uncertain what direction to go -- need to come up with a plan today or tomorrow.

Bea Seibert

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Rumigirl
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Off abx??!! ARe they out of their minds?? OMG.

Please, you need outside help here to pressure them to do the right things.

Maybe, maybe he would be well enough to move to another hospital by then, a teaching hospital. But I realize that that is a long-shot at best. And, of course, the IDSA guidelines rule at all hospitals. But there has to be a better place for him. Or another solution.

My mantra for you: lawyer/Patient Advocate/Ombudsman.

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NEMOM
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Bea,

I'm so sorry to hear that the Dr's are thinking of stopping the abx. What on earth is their reasoning for this. This whole thing is so maddening. I can't imagine what YOU are going through.

I will continue to lift you and Steve up in prayer.

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payne
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I am so sorry to ask this..
If steve comunicates ?
what does HE
think his body
is telling HIM
to do..?
many times my body tells me its needs.
no matter what any one says its STEVE's Call.
much Faith and Hope today...

--------------------
TULAREMIA/rabbit fever ?

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Dekrator48
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Praying for the enlightenment of the Dr's minds, Steve's healing, and strength for you and Steve.

--------------------
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

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CherylSue
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This poor man has suffered so much. God, please help him.
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Dogsandcats
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So sorry. Wish I could be there to sit with you and give you a hug..

Our heavenly Father is with you and Steve. May He comfort and guide you.

--------------------
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

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sammy
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Dear Bea,

I know that you have probably thought of everything but I was wondering, have the doctors tested or treated Steve for Strongyloides?

For some reason, I may be mistaken, I think I remember him having high eosinophils like me. I've been doing some research for myself about strongyloides since I tested low positive.

It can cause ARDS that requires mechanical ventilations, it can cause pneumonitis, it can cause sepsis (usually gram-negative bacilli), it can also cause sezuires...

Read more here:
http://emedicine.medscape.com/article/229312-clinical#a0256

Healthy people usually do not have symptoms and can carry this disease for life. If the person becomes immunocompromised, it can become life threatening.

I know this might possibly be a rabbit trail, something that does not apply to Steve. I just thought that it might be worth looking into if it had not been already. The doctors should be the ones thinking outside the box, since they are not, maybe we can do it for them.

Hugs Bea. Keep hoping. We are here for you. We will keep praying for you and Steve and the medical team.

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seibertneurolyme
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Update #13,

I am going to consider this lucky 13 -- NOT unlucky 13.

Not much time. Tomorrow is d-day. Steve had a really rough day -- fever most all day even under a cooling blanket -- highest was 103.5 I think. WBC went back up to 26,500 and the I.D. doc still wants to discontinue antibiotics tomorrow. Studies show longer courses of antibiotics are not needed for the bacteria he has tested positive for and so on. 7 days should cure his bacterial pneumonia.

On a more positive note his platelets are coming up -- at 158 I think from a low of 102.

Even before I got back from doing an errand and saw the crash cart in his room I had decided it was time to take a more aggressive stand. Thankfully the crash cart has not been used yet -- but they are leaving it in Steve's room overnight. His heart rate takes sudden jumps from 105 or so up to about 170 and he has PVC's and an arrythmia I think. So far extra lopressor seems to be working.

They had gotten the oxygen down to 70% yesterday but with the higher fevers had to go back to 100%.

I asked some of the respiratory people and they said they have seen people as sick as Steve make a full recovery. Of course they also said that it always surprises them who does or does not make it.

The doctors may have given up on Steve but the staff are doing great. They helped me get in touch with all the right people. And I owe a big thank you to Dr B who responded to hubby's LLMD who called for help. I have a plan of attack for tomorrow and with lots of prayer I think Steve can get the help he needs.

I know there are no guarantees, but he deserves a fighting chance. Until I insisted they do more cultures there were not even any more outstanding tests or at least nothing of significance.

Not only do I have to fight them on the big issues -- so far no one even wants to prescribe culturelle which is the brand of good bacteria they use in this hospital. In other hospitals I just carried one of those insulated lunch boxes with ice packs and brought in our own good bacteria, but that is not realistic in this situation. Steve does not need c. diff on top of everything else.

As sick as Steve is I am not going to do something that I can be blamed for if their treatment screws up.

But as soon as I can get him out of there I will probably seek out the best Chinese herbalist I can find. He is going to need more than just drugs to get back on his feet.

Sammy -- good memory. Yes Steve had trichostrongylus way back when he first got sick. Think that is a very similar parasite to strongyloides. Not 100% sure but I think the ivermectin he took last winter would have gotten rid of that parasite.

It is time for bed. Will update tomorrow as soon as I have anything to report.

I have been reading Steve his get well cards. He is too heavily sedated to respond. But when he gets better I am sure he will want to see all the cards.

Keep praying for a miracle.

Bea Seibert

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Andie333
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Bea, miracles happen all teh time. You two continue to be in my thoughts and prayers.

Thanks, as always, for the update.

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Carol in PA
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I don't know if I should tell you this, but when I started reading your update and got to the part about the crash cart, I burst into tears.


Dear Lord, please give this man the strength he needs.

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Rumigirl
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Me, too, my heart jumped in my throat when I read that part! Thank God that it hasn't been needed.

Thank God, also, for your doctor reaching out to Dr. B. Bless his heart, if anyone is the right person to consult, it's him.

I don't know what your plan of attack is, but I'm glad that you have one. I was talking with my IVIG nurse today about your situation, as it is so much on my mind. She was appalled, as we

all are, and said first that you should ask to speak with the the Director of Nursing for help, but then said that you could go straight to the top to the hospital administrators, which would definitely get some action. That would be much more to the point.

Love and prayers for a good outcome tomorrow and beyond.

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birdie67
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Sending you and Steve strength, love and prayers.

Miracles happen!!

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BoxerMom
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Sending love and miracles your way!!

Dogs sending slobbery kisses and tail wags. That is their style.

BoxerMom

--------------------
 - Must...find...BRAIN!!!

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glm1111
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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*

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rera2528
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Bea - sending you love, hope, and strength.
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seibertneurolyme
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Quick note. Prayers are working.

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

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joysie
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Prayers for you and Steve.
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Jane2904
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Onward and upward Bea!!!

We are all here for you and Steve.

Sending hugs and strength.

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Dekrator48
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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

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linky123
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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

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Sammi
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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.

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tickled1
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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.

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WPinVA
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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.
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lyme in Putnam
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Good thoughts, prayers up. God bless.

--------------------
He took u to it, He'll you through

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Lymetoo
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quote:
Originally posted by seibertneurolyme:

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!

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Rumigirl
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You go, Bea! Go to the hospital administrators, if need be, please, please. We're all rooting for you both.

xoxoxo

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lax mom
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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.

If God be for you, who can be against you?

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♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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Littlesprout
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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

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LymeMECFSMCS
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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.

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Rumigirl
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ymeCFIDSMCS, that is encouraging! What turned it around for you? (I'm not trying to high-jack the thread, only shed light here).
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LymeMECFSMCS
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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.
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LymeMECFSMCS
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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.

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Keebler
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-
UPDATE

Bea's latest post 5:35 PM (ET) Friday, Sept. 28

See this thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120374;p=0

Topic: URGENT -- Prayers Needed

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
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Keebler
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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:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120374;p=0

Topic: URGENT -- Prayers Needed
-

[ 09-28-2012, 11:27 PM: Message edited by: Keebler ]

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beaches
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UP
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beaches
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aiden424
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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

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You never know how strong you are until being strong is the only choice you have.

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