posted
What would I hope to accomplish with a lawsuit/legislation?
Someone asked me this question today. They said ``You have been researching tickborne diseases for over 10 years and you should not expect a doc to be able to step in and know everything you do.''
My response -
I have no medical background so learning the basics took years.
If an I.D. doc is treating infections - at a minimum they should know how to diagnose babesia.
If they are playing God and denying treatment prescribed by a more knowledgeable physician then they either need to get educated or at the very least collaborate with the other physician.
The same person asked if I planned to devote the next few years of my life to this - I am not sure if it will require 100% of my time, but it will be priority number 1.
It doesn't matter if the docs were truly evil or not - they were obviously uneducated and unwilling to learn. If I can prevent one death or help one patient get treatment that will help them recover their health it will be worth it.
Doing nothing is not an option. Yes, Steve's suffering is over. If his death leads to new laws and new attitudes then I think that is a fitting legacy. And I don't think that is an unchristian attitude.
In the spirit of Thanksgiving I would like to ask each person reading this to send a thank you card to your current LLMD or whatever physician is helping you the most. We tend to take them for granted and they put their reputations and livelihood on the line on a daily basis more than many may realize.
It is time for the Lyme community to put their differences aside and join together for the good of all patients.
No one should be afraid to go to the hospital or ER because they think the docs will not only not help but that they will make them even sicker.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea-I love this post, and I think you are so spot on. "Doing nothing is not an option"...indeed, that is correct. We must all do what we can to help raise awareness and to counter the denial and silence about this disease by the mainstream medical community.
Also, the idea of sending a thank you card to your llmd or most helpful physicians is a great idea. I sent two handwritten letters the other day-one to my LLMD, the other to my GP-to thank them for being so supportive to me in my decision to get the TPN treatment, and just a generalized thank you to them taking the time to treat me with such skill and empathy. They were both moved by it, and it made me feel good to let them know that their help was appreciated. Jess.
posted
"It doesn't matter if the docs were truly evil or not - they were obviously uneducated and unwilling to learn. If I can prevent one death or help one patient get treatment that will help them recover their health it will be worth it."
Indeed!!
I haven't seen my LLMD in more than 3 yrs. He will be delighted to receive my "Thanksgiving" card!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Wonderful post Bea.
When I was just hospitalized, the ID Dr was more concerned with giving me the third degree about why I would travel to NY to see a Dr, etc., instead of trying to find out what was wrong with me...while I was writhing around with rigors/fever/pain and crying.
It felt like I was on trial.
I was in there with a fever, and they asked me if I was abused???
They make the patients justify themselves...which is wrong.
Bea, you do whatever you feel up to doing. It's not like you have to sign a contract saying "I promise to devote the next 4 years to Lyme advocacy/legal issues". That's ridiculous.
This is YOUR life, you do with it whatever you choose. Being Christian or unchristian has nothing to do with it. Whomever uttered such nonesense should be ashamed to put that kind of guilt trip on you.
Don't worry --it was a family member who has been very supportive who was asking the questions. I think they just wanted me to think through any decisions I make and not just act out of anger.
And the question about the next few years is actually somewhat relevant because there is a 3 year statute of limitations in regards to any potential legal action.
Yes, having to explain yourself over and over does get old. It is the attitude that the patient is dumb and stupid that can really get under your skin.
As one of many examples over the years, I still remember one doc taking me aside and telling me my husband must be psychiatric because he was not vomiting correctly. Turned out he had a partially paralyzed ileus and ended up needing to have his stomach pumped.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Excellent idea. I'm sending a card to my doc right now.
I am a Christian and I personally think that God may be using you to make significant changes for patients suffering across the country.
I use to focus on my own pain and destruction in my life. Now I find myself sobbing and praying for every Lyme patient out there. My heart bleeds for those that are suffering, including you who lost the love of your life.
Posts: 2232 | From USA | Registered: Aug 2009
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Bea, you are my hero. Despite the very recent loss of your beloved husband, you are still here on this board wanting to help everyone else.
You have an enormous ability to understand the scientific and medical aspects of these diseases. Kudos to you for your unyielding and ongoing efforts to help others, despite your own profound loss.
Thank you so very much for everything you are doing. I am keeping you in my prayers.
Posts: 1885 | From here | Registered: Jul 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I hope many join you/help you and I pray God will have His hand upon this.
This is so crazy , about our treatment. it seems like a very scarry movie.
More than twice I should have gone to the ER, and didn't because of the LD base.
Yet a friend is diagnosed with Lupus and they just seem to jump through hoops to get everybody on board ,no crazy questions, and all the treatment they have and comfort
posted
Bea, I am sooo sorry that your husband is not with you. He was taken way too soon.
I hope your hubby does become a legacy and is the turning point of this unbelieveable Lyme faux paux we endure.
If you are looking for networking partners, Judith Weeg with the national Lyme Disease United Coalition (LDUC) may be a great place to start.
She has done a lot for the Lyme community, has a great amount of resourses, and contacts.
I have done some research for the LDUC and would be interested in doing more research in the Lyme field if you ever need assistance finding info.
I too, feel moved to do what I can to prevent any other person from going down the medical road I have had to endure to get a Lyme diagnosis and treatment.
All Lyme victims should consider getting on the band wagon and making this better for all, including ourselves.
The little people do have power in big numbers. We can make a difference.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
Bea, you are indeed a hero to all of us. Thank you so much for your hard work. You are making a HUGE impact on many,
and I, too, believe God is using you to help us all. Thank you, and God bless you.
Posts: 331 | From West Coast | Registered: Jan 2012
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
You are amazing. Since I have been coming to this site about 5 1/2 year ago. you have always been here. you alwaon you ys offer solid advice. I know your husband is looking down from above and is so grateful you are his wife.
I will def send my llnd a thank you note and our pandas doc as well.....xoxo
Posts: 3905 | From USA | Registered: May 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks for the great idea, Bea!
I totally support you and appreciate everything you do for ALL of us!!
-------------------- 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
Thank God for you! We all need advocates in this awful mess. I went to ER a couple of months ago, and although it wasn't necessarily "lyme" related, they did not do the appropriate treatment. They didn't do any scans or tests. Just treated me like I was stupid to waste their time, basically, especially the doc. The nurse was much nicer. When you can't urinate at all and feel you are about to bust, and in pain as bad as labor, you just don't know what else to do. After 2 catheters I finally got some relief, but the pain in my kidneys was intense. The doc came in nonchalantly and said I had a UTI and gave me cipro and sent me home. When I went to see urologist, he said in fact I did NOT have UTI, but probably passed a kidney stone in ER. The cath may have helped it pass.
I knew better than to even bring up LD, because each time I ever have they freak out. I brought up my neurogenic bladder, (which is caused by LD) but said they "don't know the cause", which is true by the neurologists account. He doesn't know the cause of my neuropathy either..well, I do, but NO doc listens..at least around here. The urologist did a CT scan but found no other stones (thank God).
Now, because of this they (pcp and uro) are weaning me off my morphine (8 years taking) because they think maybe that "caused" these problems. I went along just because I want to see what it's like without that after all this time, but I know it didn't cause the bladder problem as I had it before I ever took the stuff.
I guess my whole point is just that when dealing with mainstream docs, it's just SO frustrating. I know what you and your hubby went through was OH SO much worse, but who's to say any of us won't be put in life threatening situations because of their stupidity?
Even when asked about the LD, most docs do whatever they can to "rule out" LD right away and continue looking for other things that just aren't there. When they give up, then they just drop you like a hot potato, or imply it's in your head..
I have no llmd at the moment due to purchasing a home and trying to provide some stability for my family. I HAVE to depend on these guys for now anyway, and it can be quite frightening. I have been letting my new pcp check out everything to make sure there aren't any other issues, but she hasn't found much.
I really hope I can still walk after I'm off the morphine. I'm at 1/2 dose now and the pain is already increased greatly. All this at the holidays, PLUS she's had me dieting as well. I've lost 30 lbs so far, but according to her, still need to lose 35 more. She thinks that somehow my neuro pain will go away if I'm thinner. I don't see it, but I'm doing the diet primarily to prove to her that it won't matter.
I don't honestly know why I want her to believe me so much, except that I just need someone here to. I guess if all else fails I can return to my previous pcp, although he doesn't know what to do to help me. At least, he believes me though.
Thanks for listening. Not sure why I hijacked this thread like this.
I support you 100% bea
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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If it would help your lawsuit I can write up my experience having an ID doc in hospital deny my b. duncani too (which almost killed me as you know), and literally yell at me with incredible hostility about my infectious TBDs, which was the main reason I could not return to the hospital when I was then dying in respiartory failure unable to crawl even a few feet.
Because the "experts" denied reality, so did my family -- hence, in part, their refusal to care for me as I was dying and my reliance on patchwork and mostly not-there care that also threatened my life.
My labs from Igenex showed babesia duncani (and my LLMD had diagnosed me with babs, and called into the hospital which was part of what the ID ranted about, trying to discredit my doc), and all symptoms and signs pointed to this infection being the reason for my respiratory failure that followed.
A ventilator, meds and herbs at bedside, a minute-by-minute clawing out of certain death, and supportive medical providers who were not affiliated with the hospital saved my life as I posted before. But I am not the same -- I have very serious long-term health problems from what I went through (consistent with long-term survival from ARDS), and am far more disabled because of what happened. I know I'm lucky to be alive.
Nobody, though, should be this unlucky period -- and we all know it's not luck, it is decisions that are made by people in power that take lives.
You're absolutely right: anyone trained in infectious diseases should be reading up constantly on infectious diseases: the onus for this education should not be on us.
In terms of what is a Christin or unchristian attitude, well I'm certainly no expert, but it seems to go without saying that a purely Biblical take on this would validate that a Christian attitude means not judging the sick, and giving them voice *especially* when they are socially ostracized.
So yes, it seems a fitting legacy for Steve to fight for justice. He is a fire that keeps burning through the fire in you to make things right. Keep fighting.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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I have contacted a well known lawyer, but with the holidays have not gotten a response so far. Will post when I have more info.
Every time the hospital sends me some more paperwork I just get more upset. They can't even seem to get their own story straight anymore -- which in the end is to my advantage I guess.
The saddest part is that the docs didn't even have to do the research -- all they had to do was read the abstracts and journal articles I had put in hubby's medical file.
Thanks for the offer of help. I am sure it is painful to relive the past, but unfortunately none of us can escape reality. We just have to do the best we can to move forward. Will let you know if I need anything.
Twicebitten,
Don't worry about ranting. We all need to do that from time to time. I can understand your wanting a doc to be on your side. The denials and questioning over the years were really hard for hubby to deal with. Sometimes it seems to matter more personally if certain docs believe you than others. If it is someone you see frequently then that is much more important.
Hope you can find something else that will help with the pain.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I do think it is to your advantage to have inconsistent paperwork from the hospital, though I'm sure it's incredibly upsetting to see. But then, you were there, and you know how they behaved. . .
And unfortunately, so many doctors view patients who do their own research as suspect, and won't even read something from a legitimate source. It's shocking and horrible. I once had a cardiologist literally refuse to take a Wall Street Journal article on ME/CFS heart issues out of my hand, and just walk out the room, while I started crying in shock that she was that unwilling to even hold it in her hand.
These realities can wear the most able-bodied person down but there is no question that continuing to fight against these injustices is essential. I hope the lawyer gets back to you soon.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Well said Bea. And thank YOU for all the help you have provided to me and others on this board.
I'm curious - was Lyme Disease listed anywhere on the death cert. as a cause or underlying condition?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
On lawsuits, one big consideration is who would provide expert testimony. Most lyme docs are leery of this, because of retaliation. So, since babesia was the suspected culprit, one of the babesia experts would be a better choice, especially the one that wrote that ARDS article.
Once attorneys who are considering whether a case will fly, especially if they only get paid with a win, see the standard of care controversy over lyme, they may be reluctant to proceed. This is why the main issue needs to be babesia, not lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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I did not really ever even get into discussions regarding lyme disease because at the time the babesia or whatever bloodborne parasite Steve had was the primary focus.
Anyway -- the death certificate lists the immediate cause of death as pulmonary fibrosis -- I think that was wishful thinking on the hospital's part. The bronchoscopy done in the hospital only said mild fibrosis. Of course one sample could be wrong, but it would be very unusual to have sudden onset pulmonary failure from fibrosis with no prior symptoms.
Then there is another line on the death certificate which reads -- Sequentially list conditions, if any, leading to immediate cause. Enter underlying cause (Disease or injury that initiated events resulting in death) last. On that line they listed -- hypoxia, respiratory failure, acidosis.
The reality is that Steve died from cardiac failure caused by ARDS (respiratory failure) caused by babesia and/or FL1953. No other cause for the ARDS was ever found. Only the positive blood smears from Fry and Clongen. Fry is still doing additional testing.
The most recent physician notes I got, which I just shook my head over, listed the cause of death as sepsis -- when all the time they argued that he did not have anything infectious other than the bacterial pneumonia which he acquired in the hospital and was supposedly cured. Also the PICC line infection was "cured" as well. Do not have the complete test results, but I think the pseudomonas which was hospital acquired may also have been "cured."
All the hospital blood cultures were negative on the last day when he had an elevated WBC and ran a high fever. Fry is trying to identify the bacteria they found. The blood work showed a severe hemolysis event on the night before Steve died and that most likely did release some hidden bacteria.
It was Day 6 on mepron and zithromax which would be consisitent with herxing from those meds. But being off the meds for 3 weeks had allowed the babesia and/or FL1953 to run rampant as demonstrated by numerous hemolysis events during that timeframe.
The autopsy results are not complete -- could take as long as 6 months. Also do not have any info yet from Columbia Presbyterian.
When I get all the final info from all the outstanding tests I will post a thread with everything all in one place.
At some point I may request that the cause of death be changed on the death certificate -- but that is a long way down the road. I guess I do need to check into the procedures and also whether there is a statute of limitations on that.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Not sure if expert testimony would even be required in the case. But, yes babesia or FL1953 is the issue.
Positive test results from 2 labs with no other cause found, plus medical journal articles and even the CDC reporting form which lists ARDS as a complication from babesia is pretty overwhelming evidence.
I am pretty sure that at least one of the microbiologists would testify and I know hubby's LLMD would.
Delay in treatment and overall mismanagement of the case is the basis for a lawsuit as far as I understand it.
I am not going to worry overly much about it -- if the case is meant to proceed then everything will come together. But as I said before, I know I can rely on many people here for any help I need with research or locating experts if that becomes necessary.
Bea Seibert
P.S. Hubby's LLMD told me that the form I had to sign giving permission to prescribe the mepron and zithromax pretty much made the case for me -- it says things like medicine is not an exact science etc.
Actually I am not even sure that we have to prove that babesia killed Steve -- just that he had it and they ignored it may be enough. Especially since they could find nothing else which caused the lung failure.
The last letter I got from the I.D. doc mentioned the negative blood smears from the hospital -- but again that is irrelevant. One of my favorite quotes has always been, "The absence of proof is not proof of absence." That is what I wrote back to the I.D. doc as my opinion of the hospital lab.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea: If your state is like CT, you may file a complaint with your state's Medical Board, the basis of the complaint would be the doctor's filing a false or incomplete death cert (by failing to note the babesia history). I did that for a patient that died of Lyme but the doc didn't even mention it on the death cert. The Medical Board did open up an investigation.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
bea, i understand completely. when my mom died she was diagnosed with congestive heart failure. duh...how can you go to a doctor for years and he doesn't know you have a bad heart?
she had all the symptoms of lyme also but nobody would listen to me. her doctor never tested her heart or anything else.
in my mind, he was evil, but then i'm narrow minded on this issue.
we had thought about suing but what could we say? they would say she was old.
i send my doctors and their nurses a christmas card and gift every year.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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