lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi everyone. I thought I'd start a new thread because the other one was getting big.
I still feel awful but my LLMD has taken over my care and I am now to receive 2 grams IV rocephin daily until this crisis passes, bless her.
I'm able to control my pain at home with percocet and oxycodone. Valium is helping with my tremors and spasms.
Of course, it will be all out-of-pocket for the rocephin, but I am blessed with a sister who is a nurse and has agreed to care for my PICC dressing.
The hospital did test me for all kinds of bacteria and viruses and I only came up positive for herpes simplex.
The doctor who eventually told me to never return (Osbourne) was the one who told me I have herpes simplex, and he was so serious about it! I almost laughed at him because all it is is cold sores on the mouth for me, and I haven't had a cold sore in years.
My spinal tap grew no cultures. It was negative for Lyme.
Thank you, Rianna, for sharing your story about your treatment in the UK. It is shocking and I'm glad you have a LLMD now.
My co-infections are: bartonella, babesia, mycoplasma, and ehrlichia. I thought I had the babesia conquered but I've been having symptoms of a relapse for a couple of months with that one.
Lymebytes, my LLMD thinks I'm "bad off" because of the acute worsening of my Lyme, most likely meningitis. It will take me awhile to return to my health baseline (which is not great), but at least now I think I might get there instead of dying!
I will be filing a complaint against Dr. Osbourne with the medical board. It will probably do no good but it will give me some satisfaction!
I just called three attorneys' offices and each one had a "gatekeeper" who all determined that I did not have a case.
I can't even get a free consultation with a lawyer about this issue. I was told my situation wasn't "serious" enough.
When I begged to differ, saying my LIFE is a serious matter, they told me I didn't have a case because I hadn't died from the malpractice!!
Grrrr.
So, thanks, everyone, for your support. I will keep working for some kind of justice, not just for me but for us all.
But right now, I need to return to bed.
Lymelady Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Write the lawyer Ira at legif AT erols.com if he is still in practice- he won the NJ teen Lyme case for $one million. He will be able to tell you if you have a case or not- the thing with Lyme is that the standard of care for chornic Lyme is... NO CARE! So we are generally screwed. BUT perhaps there is a case that they should have at least NOT accused you of psychological problems you don't have like hypochrondria? Eh? You never know!!! I hope that is still his right email- give it a try*)!! Take care- GLAD you have a good doc*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My family and I learned when my father died in the hospital due to negligence of a nurse that unless one can show a financial loss, there is no case. My father was ill and not working thus there was no monetary loss from income etc.. We did manage to get the hospital to launch a training program to fix the problem and the nurse who was newly graduated was reprimanded by the nursing regulatory body but that was the best we could do after writing to every agency/regulatory body involved.
Please consider using this letter that Dr. Stricker wrote to send to the hospital and doctors who were so unkind. It may not open their eyes but if even one doctor or nurse thinks twice when encountering other lyme patients, then it is worth sending.
The Honorable Jon S. Corzine Chairman Health and Human Services Committee National Governors Association 444 North Capitol Street, NW, Suite 267 Washington, DC 20001
Dear Governor Corzine,
I am writing in response to the letter of August 7 from Dr. Henry Masur, President of the Infectious Diseases Society of America (IDSA). That letter urged you and other governors to turn your backs on patients with Lyme disease. I would like to offer a more positive approach from my organization, the International Lyme and Associated Diseases Society (ILADS).
First, however, I would like to extend ILADS' support in the battle against Lyme disease to your state of New Jersey, which as you know has one of the highest rates of Lyme disease in the country. Lyme disease affects as many as 250,000 people per year in the United States, based on under-reporting statistics from the Centers for Disease Control and Prevention (CDC) and data from state health departments. I hope that the former governor of New Jersey is doing well in her fight against this insidious tick-borne illness.
Dr. Masur states correctly that he represents a group of 8,000 doctors who specialize in infectious diseases. However, only a small fraction of that group knows anything about the diagnosis and treatment of tick-borne diseases, including Lyme disease. Unfortunately that small faction has hijacked the IDSA policy on Lyme disease and created treatment guidelines that are so restrictive that the Attorney General of Connecticut is currently investigating potential antitrust violations and restraint of trade arising from the exclusionary process that led to the IDSA guidelines formulation.
In contrast, ILADS is an international organization of healthcare providers who specialize in the treatment of Lyme disease and associated tick-borne disorders. The members of our multidisciplinary society care for some 50,000-100,000 patients with tick-borne diseases, and we have published evidence-based guidelines for the diagnosis and treatment of Lyme disease (available at www.ilads.org). Our guidelines are flexible and inclusive. They allow practitioners to treat patients in a more pragmatic fashion, especially if those patients are suffering from chronic Lyme disease.
A major problem is that Dr. Masur and IDSA refuse to acknowledge the existence of chronic Lyme disease, stating that there is "no convincing published data" to support the existence of this serious chronic illness. IDSA has repeated this mantra despite evidence from more than 19,000 peer-reviewed scientific articles that chronic Lyme disease does in fact exist. The problem is that IDSA does not accept this evidence and buries its head in the sand every time the evidence is brought up. In fact, IDSA refused to meet with ILADS to discuss our concerns before the IDSA guidelines were adopted. It is certainly hard to convince an organization that doesn't want to listen to the opposite argument.
Dr. Masur employs two lines of reasoning to discredit treatment with longer courses of antibiotics for patients with chronic Lyme disease: First he states that "carefully designed and conducted studies of Lyme disease treatments have failed to demonstrate benefit from prolonged antibiotic therapy". This statement ignores the fact that there have been only two published studies that fit this description, and the results were mixed. A third study from Columbia University sponsored by the National Institutes of Health is currently in press, and it shows benefit of longer treatment for patients with persistent neurologic symptoms due to chronic Lyme disease. Thus Dr. Masur's statement is both inaccurate and out of date.
Dr. Masur also makes the point in bold letters that "long-term antibiotic therapy may be dangerous, leading to potentially fatal infections in the bloodstream as a result of intravenous treatment". What he fails to tell you is that long-term antibiotic treatment is used routinely in patients with serious infectious diseases, such as the case of Andrew Speaker, the attorney with resistant tuberculosis who led the CDC on a global chase before he was quarantined and treated for his disease. Nobody would argue that Mr. Speaker should not receive the full course of antibiotic treatment necessary to eradicate his infection (up to two years of therapy). However when it comes to Lyme disease, such treatment is branded as "dangerous", despite the fact that antibiotics are generally well tolerated by patients and regarded as safe by the Food and Drug Administration.
And why does IDSA consider this treatment dangerous? Because they refuse to look at the facts. For example, a homecare company with extensive experience in treating patients with intravenous antibiotics for chronic Lyme disease submitted a study to IDSA for presentation at their annual meeting. The study showed that in patients who received intravenous antibiotic treatment for an average of four months, the mortality rate was zero, and the rate of side effects was less than 1%. The IDSA response to this report? They rejected the study for presentation and refused to look at the data. Once again, there is no convincing an organization that refuses to listen to the opposite argument. It is particularly sad to see that the sources cited at the end of Dr. Masur's letter in support of his views are not articles from the peer-reviewed medical literature but rather misleading reports from Forbes Magazine, the Washington Post and Newsday.
ILADS urges the governors of all states to support federal and state legislation intended to protect doctors who specialize in treating Lyme disease against the misleading and uninformed views of IDSA. ILADS urges you to support adequate treatment for patients suffering from chronic Lyme disease, and we urge you to consider the research information that has been suppressed and ignored by IDSA. If we continue to ignore this information, the Lyme epidemic will continue to spread with no end in sight.
Governor Corzine, August 28, 2007, marks the 44th aniversary of the famous "I have a dream" speech by Rev. Martin Luther King, Jr. The members of ILADS and the Lyme community have a dream, and it is not very different from Dr. King's. Our dream is to see patients with chronic Lyme disease treated with dignity and respect by the entire medical community, so that informed physicians can treat those patients in a caring and compassionate manner without fear of discrimination, derision and figurative shotgun blasts from medical boards and medical societies. This is our simple dream, and I urge the governors of our nation to help us make this dream come true.
Sincerely,
Raphael Stricker, MD President, ILADS
cc: President George W. Bush Governor Arnold Schwartzenegger Governor Mitt Romney Senator John McCain Mayor Rudolph Giuliani Senator Hillary Rodham Clinton Senator Barack Obama Senator John Edwards Secretary Mike Leavitt Matt Salo, HHS Committee Director, NGA Kathleen Nolan, Health Division Director, NGA
Posts: 6286 | From Oregon | Registered: Jan 2006
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Aniek
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Member # 5374
posted
You should also contact the hospital patient ombudsman. There is a process to file a complaint directly with the hospital.
If I did this, I would actually focus on how the doctor treated me, and not his refusal to treat Lyme. You are just not going to change the hospitals view on your diagnosis no matter what you tell them.
If you want your voice heard, tell them that you were treated rudely, that you were discharged while in severe pain with no treatment provided for the pain, that the treating nurse was concerned because of your pain level, and the impact the doctors' treatment had on your roomate.
I would probably even say something like "The treating doctor may not agree with my diagnosis and treatment, but that does not give him the liberty to refuse to treat my pain and to treat me as inferior to other patients."
You won't change his mind as to whether you have Lyme. But you might be able to change his bedside manner, or at least get him disciplined for that.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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5dana8
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Member # 7935
posted
Hi julie
Good to hear you have the IV rochpen for now. That should do alot of good for your lyme. Also good to hear your spirits are better & you can come up for air & at least pursue some ations.
You do have a case under "pain & suffering"...I sent you a pm.
You probably want to concentrate on getting better now, either way I just wanted you to know you are still in my thoughts & prayers.
Hope the pain is better for you today
Hang in there healing hugs Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
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Member # 5374
posted
I want to add, on the legal side, it is true that there probably are not much you could sue for in damages.
Yes, you can get damages for pain and suffering. But, realistically, for a jury to give a large award on pain and suffering, you probably need a much longer period of time you were suffering by this doctors actions.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Thankfully your LLMD is helping you with the Rocephin!
TerryK is right. A family member nearly died in the ER while waiting treatment because the hospital ER admissions failed to do their job! We had a difficult case because my family member 1. had not died and 2. was retired and not earning an income.
The lawyer we spoke to told us we definitely had a case, but his firm couldn't take it. It would cost $70,000 to prosecute and it was unlikely an award would cover that expense plus give enough $$$ for pain/suffering. He did tell us to try to find another legal firm.
It comes down to economics. Very sad!!! How on earth do frivolous cases get funded if legitimate ones can't???
Kayda
[ 01. October 2007, 05:56 PM: Message edited by: Kayda ]
Posts: 582 | From midwest | Registered: Nov 2006
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On the right is a box labeled "View a Specific Disease" From the A-Z list of diseases click on "Herpes and Shingles".
I have no idea if this is part of your problem or not, but it is my understanding that Herpes virus can actually cause encephalitis or meningitis in some cases -- and you don't have to have a cold sore at the time of the attack -- the virus is activated in the nervous system at those times.
I am assuming that if Herpes was the cause of your neuro symptoms a spinal tap would catch that IF THEY TESTED CSF FOR HERPES VIRUS. Don't know if that test is any more accurate than Lyme test of CSF though.
If the Herpes virus test shows an active infection then it would be reasonable to assume that your immune system is weakened.
Be sure to ask your LLMD about adding an antiviral med or some herbs to treat the Herpes virus -- your body needs all the help it can get right now. Plus the IV Rocephin will likely lower your WBC and weaken your immune system further.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
Sincerely,
Raphael Stricker, MD President, ILADS
cc: President George W. Bush
n Governor Arnold Schwartzenegger Governor Mitt Romney Senator John McCain
Mayor Rudolph Giuliani
Senator Hillary Rodham Clinton
Senator Barack Obama Senator John Edwards Secretary Mike Leavitt
Matt Salo, HHS Committee Director, NGA
Kathleen Nolan, Health Division Director, NGA
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am glad to hear that you are IV Rocephin, and I hope that it brings you relief soon! Thank you for letting us know how you are.
It is a great thing if you write a complaint about that awful doctor Osbourne to the State Medical Board. I understand that they really do take all letters seriously, so it is a great thing for you to do in this case.
Best wishes for your regaining ground in recovery.
Posts: 2557 | From home | Registered: Aug 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I understand why Aniek mentioned focusing on the rude behavior of the doctors and I agree but one of the major concerns to me is the fact that one of the doctors told you not to come back to the hospital apparently because he does not believe in your diagnosis!!!
What if you have an emergency and it is the closest hospital? This can put your life in jeopardy. I would think that the doctor might get into trouble with the hospital administration for telling you that you were not to come back.
The reason for the letter is many fold but it would be good to let them know that one of their doctors told you to never come back to the hospital apparently because he does not believe in your diagnosis. A diagnosis that is surrounded by controversy. Two standards of care and all that....
In any case, whatever you decide to do, I hope you get some results and they understand that his behavior was inappropriate.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks for all the great advice, everyone.
I will be working on all of it in the coming days, since I'm too sick to get out and about and it beats watching TV!
Bea, I do believe I'm recovering from meningitis caused by borrelia because the IV rocephin is working so well and I'm feeling quite a bit better.
But thank you for reminding me that herpes simplex can, indeed, become serious. I had heard that at some time in the past and had forgotten.
Hugs to all!
Julie Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Please complain to as many agencies, hospitals, etc that you can. I had a tumor missed on a mammogram and I didn't even have a case. Since it hadn't spread and I hadn't died, they said it wouldn't be a case. So, that's a tough road but while you wait for suggestions here, write everyone you can. I sent letters to all the groups that certify radiologists and the hospital. I never heard anything back. I did learn to let it go, so eventually you will have your anger lesson once you start feeling better! Many Blessings! Posts: 20 | From Philadelphia PA | Registered: Apr 2004
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Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
i'm too tired to read this whole thread, but i will try after posting. i have read enough that i need to reply.
this first hit my central nervous system bigtime after i got the text book bullseye on my right calf after visiting nantucket island back i 1990; did not know what hit me. didn't know what it was. got more.
i;m just too exhausted to say so much as i want to say.
our daughter was going to a small private school - where too bad for us, her classmates mom would be the "promonant - " best of philly" 2000/may - pediatric infectious disease specialest.......who whachted us get sicker and sicker.....
is that human?
i can't believe what we had to go thru
i have the rare pos from b.b.i. labs, pos PCR of my spinal fluid circa winter 1999,
and i have learned from a variety of good sources - and personal experience, that for the last 1 1/2 yrs. drs who know what this is and get pos from other sources ( and i do have a pos from Quest while on abx ), they had no pos PCR's from MDL.
so obibvious for too many yrs i had lyme as well as coinfections - babesia is rampant on nantucket island where two of our vacations we took photos of the classic rash for which i did not relate to what was happening to me.
i wish i knew then what i know now. i did my best to protect my kids. weird is that those around me; ones who are supposed to care about children, did not care about us. buying somebrat a medical degree is not the same thing as really becoming a dr. medical dr. - limited keybourd. no less than/greater than signs , medical dr. does not = REAL DOCTOR,
and according to the IDSA i do not exist now. and drs should treat a patient neg by CDC standards , when they used to advise that was only for tracking, and should not be used over clinical dx.
i would have been dead long ago. and in so many ways i know i was. i was.
the abuses. upenn...
if they admitted i had severe late stage lyme back then, [undertreatment hell; but so many happy they still are alive. they would have put me right in the hospital - right on IV abx - right on major pain killers -
then? make me semi functionable. not in too much pain. brainwash me to think it will never get better than this. say lots of stupid things; i want to be a good sport, but this is not right....
if anyone had dared dx me in those yrs. instead i had too watch a hell that should not be.
and then the twilight zone about many using my " she's not sick" "STATUS" to use this to there social/personal advantage. and those you know so worried about you just too relieved you actually are not gravely ill (you are) and just having to keep going even though you can't. you have too.
and then to find out what happened to you. worse, you were just the one to get deathly ill and seriously damaged. your whole family has this. but so much pressure on you to keep your mouth shut. why? for who?
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