Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I think we should post this question to Bea, who will be reading this.
What would be best for us to do to help you, Bea?
-------------------- 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
Dekrator48 - good idea! I called Bea, but I didn't ask the question. I just offered.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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posted
If Bea and Steve have a Paypal account, it is really easy to set up a paying system through ChipIn (http://www.chipin.com/) which uses Paypal.
It's easier for those donating as they don't have to go through the process of figuring out how to do Paypal to someone directly, and yet it's *clear* where the funds go to (you'll see Bea's Paypal address when donating, and it will go right there).
Just a thought to simplify, not further complicate -- but if it feels too much like the latter, never mind : )
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Or could money be sent to her sister's address?? (I'm thinking her sister has a husband who is at home there??)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Maybe prepaid Visa sent to the hospital address provided? She could use it however it's needed?
I will help. Lord if ever we've needed You we need You now. Please heal our brother Steve and let both of them know You are with them. I pray in Jesus' name. Amen.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Keebler, great ideas!! Hope Bea logs in soon. any one have update? I called to much this morning, afriad to call more today.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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posted
Keebler, great ideas! anyone hear from Bea? i called to much this am, afraid to do more today.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
So sad they are unwilling to try with some things, the way the tests work. I'm so sorry for both of you, praying - wishing - hoping for the best for you both, always!
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Dr. W of WI is a founding member of IDSA. He wrote a book about 51 cases of chronic lyme disease from his practice. Does anyone know him? Can he help Steve and Bea???
Since he is a founding memeber,IDSA, maybe the other doctors will listen to him...??
Anybody know him??
**edited name of LLMD**
[ 09-29-2012, 04:41 PM: Message edited by: Lymetoo ]
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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I haven't looked at it, so I don't know how it works or if it's working right now.
Bea did not want to bother anyone and so did not say anything. But I took Dekrators' advice and jsut asked. LymeCFID , thanks for bringing up paypal. I had no idea!!
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hang in there Steve and prove them all wrong and teach them a thing or two in the process!!! Been holding my breath all day....
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Great news about Steve. Hope he feels better and better. Good light and energy to Bea, too.
I can only send good thoughts and hope there is the best nutrition on hand for Bea there. Were I to live near there, I'd be bringing down some good carrot & ginger juice, Hummus and Baba Ghanouj.
I'd also order a string quartet. Virtual ambiance.
Massage therapy for patients and visitors.
I could be the concierge extraordinaire for medical centers. I know everyone would get better quicker were I to be in charge, eh?
In no way to pressure anyone, yet for those who may be in the position to help, it's a little hard to find, so:
posted
Go Steve! Keep fighting!!! We are all behind you two and praying and sending hugs and love. Thanks for the Paypal Info.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Keebler .. I'll call you for the concierge next time I'm in the hospital. Boy, do they serve &%$#!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Hang in there Steve!!!
HUgs to both of you.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks for the paypal info Keebler.
Bea, I hope you can feel our Lord lifting you and Steve up. We are all right there beside you, praying, and cheering you on in this fight.
Love and hugs!!!
-------------------- 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
Keep fighting Steve!! Bea all the best wishes and prayers from my end
Posts: 183 | From ... | Registered: Oct 2011
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I don't know what to say except I'm terribly sorry for all both of you have gone through. These doctors belittle one's life w/zero remorse. If this was their family member on that bed, would this be the same with the doors closed? It's a sickening state of affairs and a true wake up call what a huge risk everything is both ways.
One puts their life, faith under a LLMDs care. This is what always has scared me terribly. When the true disasters happen, they have no power/influence to do anything for their patient. However, believe me, I realize the doing nothing route can yield disastrous results too.
Praying for the best for you and Steve.
[ 09-29-2012, 11:49 PM: Message edited by: seekhelp ]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
You are both in my prayers.
Hugs...
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am so sorry he is doing worse and in such critical condition. I hope and pray he has a turn around. Hang in there. Everyone on lament loves both of you. You are the best.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Even Dr H stated that the Tularemia test is also highly inaccurate and cultures cannot be done because of the risk to lab personnel.
The cure is 10 days Gentamycin...what the &%@# would it hurt for them to give him 10 days Gentamycin?
"Because of the difficulty in culturing F. tularensis, most cases of tularemia are diagnosed on the basis of CLINICAL PICTURE and/OR serology (23, 103). Serological tests for the diagnosis of F. tularensis infection are attractive because diagnostic work involving culture procedures carries a risk of infection for nonvaccinated laboratory staff (20, 88)."
Bea,
Where 2 or more are gathered in His name, He is among them....well, there are all of us on Lymenet claiming healing for Steve.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Praying for Steve and Bea. May your strength and health and life force increase. May all be well. Blessings to you both.
Posts: 873 | From WA | Registered: Dec 2005
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posted
Good Night Bea and Steve. We are thinking of you.
I emailed a long shot to someone I know who is developing a new sensor for rapid pathogen screening of blood parasites. I think he's got malaria working. It's a research device, so he may not be albe to use it in this case, but figured there's nothing to loose in the asking.
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I continue to pray to St. Raphael, St. Rita, St. Jude and St. Joseph and asking for their intercession for a healing miracle for Stephen Siebert and relief for his devoted and loving wife, Bea.
Posts: 1885 | From here | Registered: Jul 2012
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Still praying. Love you.
-------------------- '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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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
This wouldn't let me copy a section but near the bottom there is a reference to cardiac arrhythmias and pulmonary fibrosis cleared with I think IV Claforan. Sorry I can't remember for sure from 2 minutes ago.
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Lord, we know you are the Great Physician. Please place your healing touch upon Steve this morning. Give the world something to talk about! Give Bea your comfort and your peace.
In the name of Jesus, Amen.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Continuing to pray for Steve, Bea and the medical team.
I just finished reading a book called, "Embraced by the Light" by Betty J Eadie. It is an account of "the most profound and complete near-death experience ever"...at least when it was written in 1992.
It's a pretty amazing read, filled with hope. There is alot of detail in this book that is not in other books I have read about near-death experiences, or accounts of going to heaven and returning to earth.
Betty shares what she learned from God during her trip to heaven.
About illness, she says, "We are not to deny the presence of the illness or problem, we are simply to deny its power over our divine right to remove it."
Now, we know we do not deny the presence of illness....we live with it everyday...but I thought the second part of that statement was very powerful.
About prayer, she says, "I understood that once our prayers of desire have been released, we need to let go of them and trust in the power of God to answer them. He knows our needs at all times and is simply waiting for an inivitation to help us."
and "If they are sick, our prayers of faith can often give them strength to be healed..."
and " I saw that God has a vantage point we can never perceive. He sees our eternal pasts and futures and knows our eternal needs. I his great love he answers prayers according to this eternal and omniscient perspective."...."faith and patience are needed".
If anyone needs a big dose of hope, I recommend reading this book.
Love and hugs to Bea 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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Bea and Steve - continued prayers being sent your way.... all through the day and night. You are not alone. We are all there with you in spirit.
A mom and Keebler - thanks for posting about the Paypal. Was quick and easy.
Posts: 2238 | From East Coast | Registered: Jul 2010
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BUT we should wait until Bea confirms this email and that the paypal account will work ok for her.
I don't trust my brain to have remembered correctly.
Janet
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
That's the email I used and it worked just fine. If it bounces back for some reason, I'll let you know.
Posts: 2238 | From East Coast | Registered: Jul 2010
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She has been trying to work with the hospital, but the doctors just do not beleive her.
Is anyone near or around the Roanoke Memorial Hospital, VA, that understands Babesia and chronic Lyme who can help her?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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posted
A Mom, Did Bea ever find out if they tested for babesia duncani or just for microti?
I had a very similar experience almost dying of respiratory failure from what was likely my babesia duncani (long story, won't hijack list, but Bea and I have emailed about duncani and Steve's case).
I collected a bunch of abstracts/articles on babesia and respiratory issues that I compiled into 10 pages or so. I could email this to Bea if that would be at all helpful to give to the docs -- in one study (below) it's obvious that WA1 (babesia duncani) causes a much more severe respiratory course than b. microti.
J Parasitol. 1999 Jun;85(3):479-89.
Endothelial cell changes are associated with pulmonary edema and respiratory distress in mice infected with the WA1 human Babesia parasite.
Department of Pathology, Microbiology and Immunology, School of Veterinary Medicine, University of California, Davis 95616, USA.
Abstract
A C3H/HeN mouse model was established to study the pathogenesis of the human babesial parasites, WA1 and Babesia microti.
To evaluate the course of parasitemia and the associated lesions, mice were inoculated intraperitoneally with either WA1-infected, B. microti-infected, or uninfected hamster red blood cells.
WA1-infected mice developed dyspnea and moderate parasitemias, after which death occurred. Babesia microti-infected mice experienced low parasitemias with no apparent morbidity or mortality.
WA1-infected mice were thrombocytopenic but not anemic. Hemograms for B. microti-infected mice were similar to controls.
Postmortem examination of WA1-infected mice revealed prominent lesions in the lungs, including pulmonary edema and intravascular margination of leukocytes. No pulmonary changes were detected in B. microti-infected mice.
Blood gas measurements of WA1-infected mice showed reduced oxygen saturation and pH, and increased carbonic acid compared to controls, indicating hypoxia and respiratory acidosis.
Ultrastructure studies of WA1-infected lungs showed hypertrophied endothelial cells containing transcellular channels associated with protein-rich intra-alveolar fluid.
Endothelial cell activation was demonstrated by an upregulation of intercellular adhesion molecule-1 in the lungs of WA1-infected mice. The results suggest that recruitment of inflammatory cells to the lungs in WA1-infected mice induces endothelial cell alterations, leading to pulmonary edema and acute respiratory failure.
PMID: 10386441 [PubMed - indexed for MEDLINE]
Posts: 929 | From Massachusetts | Registered: Oct 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
LymeCFIDSMCS, there is NO test for Babesia Duncani in the real world except for this IgG antibody test through Focus Labs. No PCR from the CDC, major labs. No IgM side through Focus Labs. Blood smears are always an option, but a severe longshot. The system is set-up to fail based on the available panel tests. Even if the stars align and you have 5+ positive blood tests that would point towards Babesia infection, the mainstream docs happily just tell you it's not that you're suffering from.
In reality, none have a clue about this pathogen IMO. It's like fighting a ghost in a white room.
if the doctors don't believe her, who would they ever believe? She is the most educated, intelligent individual I've ever encountered on TBIs reading this forum (and obviously well-composed). If they are disregarding her thoughts, they're intentionally doing it. Her research abilities seem to be phenomenal.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Seekhelp, trust me, I know. And I know Steve was diagnosed with babesia a long time ago and still, this doesn't matter to a hospital. I was in a very similar boat. It's criminal.
Even a lot of docs who do treat babesia don't understand it can cause respiratory failure however, esp. with duncani.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
There is a lab in CA that does a B. duncani serology, but they only serve a few counties in that state. Here is the link. I am wondering if they might make an exception in this case? Steve has probably been in that state at some point, right? Right.
posted
Igenex does test for duncani specifically, or used to. Clongen also tests for it but it's separate from their species panel test (which does not cover b. duncani).
Are these tests not considered as accurate? Igenex was where I actually had mine (I have duncani).
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
This may not be popular, but I can't imagine convincing ID docs to prescribe babesia or lyme meds without corresponding lab tests that support the illness. We all know that is not likely. I've been in the hospital with my husband, and even though he didn't have lyme, my strategy was to focus on the pneumonia and lead that fight, because that is one ID docs understand and will treat. The goal is to get Steve well enough to get out of the hospital and back in to Bea's care.
My thought goes back to Bea's statement; "But of course the bigger question is what caused the original pneumonia that triggered the respiratory failure."
Thankfully, they have kept him on the antibiotic that Bea knew was helpful and didn't pull all treatment. Clearly, they haven't tested for every known pathogen, so administering treatment is hit-or-miss. In good conscience, why are they not throwing multiple antibiotics, as well as an antiviral at his pneumonia to see how he responds. That, for the life of me, I don't understand!
Posts: 964 | From san diego | Registered: Oct 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I can't get the Igenex site link directly to the babesia tests to work, so am pasting below what it says. But guessing that Bea already knows this. Their description of where the babesia cases are needs to be updated, because duncani is showing up in east coast people who have not traveled out west.
----------------------------------------------
Diagnostic Tests for Babesiosis
Babesia IgG/IgM (Babesia Microti or Babesia Duncani) IFA Test
Detection of Babesia IgM and IgG Antibodies in Serum by the Indirect Immunofluorescent Antibody Assay (IFA)
This immunofluorescent assay (IFA) indirectly detects Babesia-specific IgG or IgM antibodies in patient serum. Red blood cells from Syrian hamsters, infected with Babesia parasites, are fixed on a glass slide. Patient serum is added, and the patient's B. microti-specific IgG or IgM antibodies bind to the parasites in the infected red blood cells. In the third step, a labeled anti-human antibody is added. Fluorescence occurs if Babesia-specific antibodies are present. The slides must be read with a fluorescent microscope.
Interpretation
Assays for Babesia are usually performed using IFA against cells containing the organism. For the IFA, patient serum is titered using doubling dilutions. These dilutions start at 1:8 or 1:10. Thus, an assay starting at 1:8 would have values at 1:16, 1:32, 1:64, 1:128, 1:256, 1:512, 1:1024, etc., and an assay starting at 10 would have values at 1:20, 1:40, 1:80, 1:160, 1:320, 1:640; 1:1280, etc.
Cut-off ranges between a laboratory negative and a laboratory positive sample are comparable for most clinical laboratories. The laboratory positive must be statistically different (mean +/- 2SD) from the negative sample. This does not imply that a titer of 1:40 or 1:80 is clinically significant. In fact, a positive antibody test by itself implies nothing. However, a positive antibody test, with appropriate clinical symptoms (determined by a physician), can lead to a diagnosis.
Positive Babesiosis titers are generally 1:160 or higher. Early in disease the titers may rise 4-fold to 1:2560. Later in disease the titer falls. For this reason, the testing of paired samples 4 to 6 weeks apart improves the diagnostic efficiency.
Diagnosis based on antibody response requires the seroconversion of infected individuals toward production of anti-Babesia antibodies. Unfortunately, this approach does not always work because:
At the height of Babesiosis (within weeks of the initial bite) a patient with fever may fail to have evidence of antibody. Antibodies often persist long after the symptoms have disappeared. Polyclonal antibody-based tests lack specificity.
Test # 200
Description Antibody IgG & IgM for Babesia microti
Specimen 0.5 ml Serum
Collection & Shipping Collect in Red Tope tube, separate and send at room temperature OR Collect in SST tube, spin and send at room temperature.
CPT CODE 86317 X 2
Test # 720
Description Antibody IgG & IgM for Babesia duncani (formerly WA-1)
Specimen 0.5 ml Serum
Collection & Shipping Collect in Red Tope tube, separate and send at room temperature OR Collect in SST tube, spin and send at room temperature.
CPT CODE 86317 X 2
Nucleic Acid Based Diagnostic Tests (PCR and FISH) For Babesiosis
Nucleic acid based diagnostic tests impart enhanced performance, when compared to currently available microbiological and immunological methods for the detection of parasites in test samples. Some of the advantages are:
Increased sensitivity: The nucleic acid based tests are able to detect a specific parasite in a given sample more frequently. Increased specificity: Accurate identification of biochemically unusual strains of Babesia, and those with dramatically different outer membrane proteins, is possible. These are direct assays for the presence of the parasite and have the consequent potential to identify the etiological agent. The assay is independent of the host's immune response schedule. Therefore, much earlier detection of the parasite is possible. Direct testing allows the monitoring of the efficacy of an antibiotic regime. There is the potential to detect the etiological agent in samples of tissue normally low in antibody titers (such as skin).
IGeneX has developed two nucleic acid based assays for the direct detection of Babesia in clinical specimens: the PCR and the Fluorescent In-Situ Hybridization (FISH) assays. The PCR assay detects DNA and can be performed on fresh or archived clinical specimens. The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection).
The PCR Screen Test for Babesiosis (B. microti and/or B. duncani)
The PCR-based diagnostic assay for Babesiosis is highly specific and sensitive. It is a three-step assay, performed directly on whole blood. The three steps are:
Hybridization/Selection Amplification of Babesia-specific DNA Detection of Babesia-specific amplified DNA fragments
Hybridization/Selection The hybridization/selection step specifically removes the common PCR inhibitors from the clinical sample and, at the same time, selects, purifies, and concentrates the DNA fragment of interest, thereby improving sensitivity.
PCR Amplification During the second step, the purified Babesia DNA fragment is PCR amplified with Babesia-specific primers. The primer is a synthetically produced nucleic acid sequence that, by design and selection, contains Babesia-specific nucleotide sequences. Under predetermined PCR conditions, this sequence "hybridizes" or binds specifically to Babesia species and not to other bacteria or parasites or human DNA. Therefore, only Babesia-specific DNA is amplified.
Detection of Babesia-specific Amplified Products by Dot-blot In the third step, the PCR-amplified Babesia DNA fragment is detected by dot-blot. The PCR product from each sample is transferred on to a nitrocellulose membrane. The membrane is hybridized with Babesia specific probes targeted within the amplified fragment in a dot-blot format. A positive signal (blue dot) appears in Babesia positive samples on the membrane.
The combination of these three steps imparts a very high specificity and sensitivity to the test.
In order to minimize DNA contamination, separate work stations are utilized for the set- up, reagent preparation, cycling, and detection.
It should be kept in mind that a negative result with the PCR assay implies only that Babesia DNA is not detected in the test sample. The PCR can be performed on ticks and EDTA whole blood, since the organism infects red cells. Samples have excellent stability if mixed with equal parts of 95% ethanol, special IGeneX PCR buffer, or are kept at -70�C
Collection & Shipping 1 Lavender top tube-(EDTA). Ship immediately at RT.
CPT CODE 87800, 87801
Babesia FISH Assay
The Babesia FISH test is in vitro fluorescent in situ hybridization microscopic tests for direct detection of Babesia species (e.g. B. microti, B. duncani) rRNA in whole blood smears from patients of all ages with signs and symptoms of Babesia. The test is intended for use by clinical laboratories for the diagnosis of human babesiosis infection.
Principle:
The Babesia FISH test detects the specific ribosomal RNA (rRNA) of the Babesia genus (e.g. B. microti, B. duncani) in the blood of infected patients. The FISH assay is performed on a whole blood smear. The whole blood is smeared and fixed onto a glass slide. The fixed blood is hybridized to a fluorescent labeled Babesia genus specific probe that is targeted to the rRNA of Babesia. Excess probe is washed away. The smear is counterstained and viewed under the photomicroscope microscope at 1000X using a specific filter for the selected dye. Since, the rRNA is present in the cytoplasm, it causes the parasite to give a fluorescent signal while maintaining its morphology.
FISH Assay Sensitivity - 100%; Specificity >98%
(This is based on the proficiency testing (PT) results on 90 whole blood samples from patients, provided to IGeneX by New York Health Department between 2000 and 2007)
Test # 640
Description Babesia FISH
Specimen 1 ml Whole Blood (EDTA) - Slides will be made at IGeneX when sample is received
Collection & Shipping 1 Lavender top tube-(EDTA). Ship immediately at RT.
CPT CODE 88365
Posts: 2888 | From USA | Registered: Mar 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
LabCorp has a test for Babesia Duncani (WA-1). It is my only positive test in this mess.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Praying in Jesus name for total recovery! Prayers and love sent to you both!
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lymednva. that LabCorp test is outsourced to Focus Labs in CA. It's the one we all had..many were positive I believe. It's ONLY an IgG test, not IgM. I recall Bea putting an article out saying 28% of those tested were positive. YES, 28%. However, to even bother testing for it, I would imagine you'd need to be ill and have a doc suspecting it. Something is very, very wrong that the lab never bothered to construct an IgM portion in my opinion.
Smells fishy to me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Steve is still relatively stable -- fever came back this morning and heart rate went up but they got both under control quickly with a cooling blanket and change in dose of cardizem. They are leaving him on the paralyzing drug Nimbex for now -- not sure how long he will be on that. His blood gases are looking better as well -- CO2 is down to 65 and oxygen is doing better as well.
But the big news and what I see as a bargaining chip actually is the fact that the PCR test they did was for babesia microti. It was of course negative as he has never had antibodies for that species.
But from my viewpoint they made a mistake and ordered the wrong test because they obviously do not know as much as they think they do about treating babesia.
The babesia PCR test from LabCorp is a send out test to Focus Technologies. It is my understanding that the CDC investigated the Focus Technologies lab recently (in the last year or so) because they were concerned because the lab was having too many positive test results. They could not find anything wrong with the lab.
Clongen does have a babesia PCR test also and F lab may have one -- not sure as they redid some of their tests in the last year.
Clongen also offers a culture test for babesia -- but you have to be off antibiotics to do the test. Steve tried that in April and nothing grew out unfortunately even though the phase contrast microscope exam done around the same time found babesia infected cells.
Also Steve's WBC went back up a little to 27,000 again. Finally got the internal medicine doc to admit that the elevated WBC plus fevers probably does indicate an unknown infection. They are doing more cultures -- blood, urine and stool -- hopefully they will at least find something so they will continue antibiotics.
And what really irks me -- they are testing for c. difficile, but so far I have not been able to talk any of the docs into prescribing culturelle (the brand of probiotic used in the hospital) to prevent c. difficile.
Got caught up on sleep a little last night and spoke with my sister and think I have some ideas on how to proceed. Wish I could move things along a whole lot quicker but am trying to be patient with the process.
Will find out tomorrow if the patient advocates have found another hospital I.D. dept willing to review Steve's chart -- maybe at least another hospital would treat the pneumonia empiracally with antivirals plus additional antibiotics and antifungals as well.
I did find one interesting journal article that I wish there was a lab using this technique.
PMID: 1888313 "Clinical and pathological findings of Babesia infection in dogs"
quote-- Low parasitaemias in routine blood smears complicated diagnosis but smears made from ear or toe capillaries, or AFTER HAEMOCRIT CONCENTRATION, greatly enhanced finding parasitised cells. -- end quote
I think tomorrow may be a long day. Will post an update after I meet with all the docs and various admin staff and committees.
My paypal address is correct as listed.
My sister left me a couple of CD's and I have been playing them for Steve -- one is celtic music recording of hymns and the other one is instrumental piano music. I need to bring in some more of his classical music tapes from home. I think listening to the tapes is calming for me and probably for him as well.
Thanks so much for the prayers and words of encouragement. Just trying to get by one day at a time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tickled1
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So relieved to hear he is hanging in there Bea! What wonderful news. Keep fighting!
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Sammi
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Bea, I am so glad that Steve is stable. There are a lot of prayers being said for you both.
I so just wish they would give him the meds he was doing the best on, including the meds for Babs. My prayer now is that his Babs test comes back positive, so he will get the treatment he needs. If ever a positive test is needed, it is now.
I also hope another doctor will look at his records.
Hang in there okay? Prayers continue!
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Andie333
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Bea, this is such encouraging news...I am glad he's stable today and that you've managed to get some rest.
Continued prayers from me.
And thanks, too, for keeping us posted.
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Dekrator48
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Thsnks for the update, Bea.
It's good to hear that Steve is relatively stable, that you got some sleep and you have some ideas on how to proceed.
I will keep praying....Lord, show Bea the way she should go, please strengthen and heal Steve and open the Dr's minds.
-------------------- 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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seekhelp
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Great news Bea. I'm happy to hear this. Stay strong. I wish you the best getting the docs to help.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Bea, Another thought: if the doctors are worried about C. diff, is there a gastroenterologist who can get you the probiotics?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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posted
Wonderful!! Perhaps they will continue to TREAT HIM and he will continue to improve!
For what it is worth... You are also on the right track with the music. It has been proven that the body responds best to the real thing...
No synthesized stuff! a REAL piano and acoustical instruments are the ticket!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
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posted
Good news!
Still praying to St. Raphael, St. Rita, St. Jude and St. Joseph for their intercession on Steve's behalf.
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Nancy2
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Still praying for you both!
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Rumigirl
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Bea, hallelujah that Steve is stable!! I pray that a doctor is willing to treat him appropriately, that he continue to improve, and that you both can get out of the hospital, so the real treatment can begin again!
As with all of us, you both are in my thoughts and prayers day and night. I am so encouraged that so far he is proving them wrong and prevailing.
Have you gone to the hospital administrators? That would get the fastest and best response of all. Believe me, they do NOT want a wrongful death lawsuit on their hands!
I googled Babesia and pneumonia, Babesia and respiratory failure and got lots of studies showing both. I should post the links, but don't have time now. These guys are clueless about TBI's!! Or any other pathogens either for that matter.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I have decided that the Lord works in mysterious ways.
I already pointed out to the I.D. docs that the vancomycin they were prescribing for Steve's staph epi infection from his PICC line would help treat lyme.
And then his LLMD was asking me today if I could talk them into prescribing diflucan. Don't think I had told the doc that they had prescribed it for the thrush they gave him from the steroids. But at least the diflucan could theoretically help with lyme also and some docs also think it helps with babesia.
Tomorow is day 10 on those 2 meds and the original plan was to stop them after 10 days. So that is one battle for tomorrow.
Tonight the pulmonary docs came up with a new plan. Started Steve on nitric oxide through his ventilator. It is supposed to be a pulmonary vasodilator. Seems to be working -- pulse ox went up from 86 to 92 in about 15 minutes. They will keep him on that -- it is a continuous gas -- for a couple of days and then try to wean him off it.
The interesting and mysterious part is that just today when I went to the medical library I had looked up all 23 pubmed abstracts on babesia WA1. Found PMID: 12654819 "Resistance to acute babesiosis is associated with interlukin-12 and gamma interferon-mediated responses and requires macrophages and natural killer cells."
Here is a quote from the abstract -- Resistance appears to correlate with an increase in nitric oxide (NO) production.
So it looks to me like once again the docs are helping out unintentionally.
A mom -- Yes the paypal payment went thru. Thanks so much for your generosity. And thanks to the others who have contributed.
But as I said in an earlier post cards and letters and prayers are what is needed most -- Have been reading Steve his get well cards and will continue to do so.
Although he is sedated and paralyzed with meds he is not in a coma according to the docs. And he does respond to pain even though he is on Fentanyl. He had blood drawn 2 times and I could saw the spikes on the monitor that shows brain wave activity.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Cards it is!! Even my old boss is sending prayers for Steve and you!! Please tell Steve everyone is pulling for him.
EVen someone in Texas is worried about and wanted you to have this abstract:
It looks at the 50% inhibitory concentrations: (IC50s) of 8.3, 11.5, 12, and 126.6 μM for ciprofloxacin, thiostrepton, rifampin, and clindamycin. But the species in the study are B. bovis and B. bigemina.
"Apicoplast-targeting antibacterials inhibit the growth of Babesia parasites"
The apicoplast housekeeping machinery, specifically apicoplast DNA replication, transcription, and translation, was targeted by ciprofloxacin, thiostrepton, and rifampin, respectively, in the in vitro cultures of four Babesia species. Furthermore, the in vivo effect of thiostrepton on the growth cycle of Babesia microti in BALB/c mice was evaluated. The drugs caused significant inhibition of growth from an initial parasitemia of 1% for Babesia bovis, with 50% inhibitory concentrations (IC50s) of 8.3, 11.5, 12, and 126.6 μM for ciprofloxacin, thiostrepton, rifampin, and clindamycin, respectively. The IC50s for the inhibition of Babesia bigemina growth were 15.8 μM for ciprofloxacin, 8.2 μM for thiostrepton, 8.3 μM for rifampin, and 206 μM for clindamycin. The IC50s for Babesia caballi were 2.7 μM for ciprofloxacin, 2.7 μM for thiostrepton, 4.7 μM for rifampin, and 4.7 μM for clindamycin. The IC50s for the inhibition of Babesia equi growth were 2.5 μM for ciprofloxacin, 6.4 μM for thiostrepton, 4.1 μM for rifampin, and 27.2 μM for clindamycin. Furthermore, an inhibitory effect was revealed for cultures with an initial parasitemia of either 10 or 7% for Babesia bovis or Babesia bigemina, respectively. The three inhibitors caused immediate death of Babesia bovis and Babesia equi. The inhibitory effects of ciprofloxacin, thiostrepton, and rifampin were confirmed by reverse transcription-PCR. Thiostrepton at a dose of 500 mg/kg of body weight resulted in 77.5% inhibition of Babesia microti growth in BALB/c mice. These results implicate the apicoplast as a potential chemotherapeutic target for babesiosis.
[ 10-01-2012, 08:42 AM: Message edited by: a mom ]
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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link from another worried freind, although I think you know about this, jsut in case:
acrodermatitis chronica atrophicans If you aren't trained to look for it, you probably won't find it or if you find it, you might never associate it with Borreliosis as they do in Europe. Looking at these pictures, does Steve have any skin problems that are similar in appearance to those in these images?
posted
That is so interesting about the nitric oxide, Bea, because nitroglycerin tablets and spray were one of the things that helped turn it around for me when I was in resp. failure from b. duncani and things were very hopeless.
I have a good feeling that these positive interventions will keep Steve turning in the right direction. I'm so glad that Steve has stabilized a bit.
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BoxerMom
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Diflucan has consistently been one of my best Babesia meds. I hope they will continue it.
And I know this shouldn't be the case, but my FIL had Babesia-like herxes on IV Vanco.
I'm glad the nitric oxide is helping. I think it's pretty controversial in chronic infections/chronic illnesses, but for an emergency situation, anything that helps is worth trying.
Sammi
Frequent Contributor (1K+ posts)
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Bea, I am so happy there is some help from the doctors even if it is unintentionally. It is good the nitric oxide is helping and can also help with Babs. How timely that you found the journal article regarding this.
Jane2904
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Continue to keep you both in our thoughts and prayers.
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payne
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Unintentionally, Devine Healing- touched by an ANGEL perhaps... However, whenever, whatever... singing and dancing to the Heavens, Recieve and Be Blessed.. in The Lord, love hug
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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Dogsandcats
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Our God is a mighty God..
Lord, please heal Steve Give the Dr.'s guidance and direct Steve's care. Watch over everyone who takes care of Steve....
Bless Bea with peace, guide her and give her rest.
In your name, we thank 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 Posts: 1967 | From California | Registered: Oct 2010
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poppy
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Has he ever been tested for HTLV? It can have pulmonary symptoms and depress the immune system, making a person more susceptible to other infections.
I see on another thread that Bea already knew all the details on babesia testing. Shoulda knowed. But I will leave my post on the subject for anyone else who might need the info.
[ 10-01-2012, 12:56 PM: Message edited by: poppy ]
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Haley
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I agree Bea. God works in mysterious ways. Hopefully that is an answer to prayer.
There have been many times in my journey, that I would rack my brain trying to figure out what to do next. I would eventually surrender and pray.
Out of the blue some provider or someone (that knows nothing about Lyme) would get me heading in the right direction. It blows my mind every time.
Continuing to pray......
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Tammy N.
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Sending continued prayers. So happy to hear Steve is stable. Praying for his recovery. God bless. Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Continually thinking of the two of you. I hope that things continue in this direction. You are both very strong and brave. Sending love and light your way!
Posts: 274 | From United States | Registered: Feb 2012
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Just talked to Bea. She is so totally amazing!! She met with doctors and it sounds hopeful. She will let us know what happens!
Bea posted earlier and said it would help to send Get Well Cards.
mailing address for the hospital:
Roanoke Memorial Hospital - for Steve Seibert P.O. Box 13367 Roanoke VA 24033
Thank You Lord for watching over Steve and Bea.
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Dekrator48
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Thanks for letting us know, a mom, that Bea talked to the Dr's and it sounds hopeful.
Our God is an awesome God.
Thank you, Lord Jesus, for hearing our prayers.
Continuing to pray for Steve, Bea and the medical team.
-------------------- 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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