CDC Video: "Feeling Worse After Treatment?"

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
RitaA
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CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Tue 30 Dec 2014 8:31

https://www.youtube.com/watch?v=823jkRIaLgA
Feeling Worse After Treatment? Maybe It’s Not Lyme Disease

Published on Dec 29, 2014

Robert’s story begins with a history of joint pain/stiffness, memory loss, and numbness and tingling in both hands. He is diagnosed with chronic Lyme disease and treated with long-term antibiotics. His symptoms worsen and he begins to lose sight in the right eye. Evaluation by a neurologist and an ophthalmologist leads to the diagnosis of a pituitary tumor—not Lyme disease. Robert has now has permanent heart and kidney disease, joint pain, and severe obstructive sleep apnea as a result of the incorrect diagnosis and treatment. If you’ve had treatments for Lyme disease and still don’t feel better, please get a second opinion. An incorrect diagnosis can lead to permanent damage or death.

Comments on this video are allowed in accordance with our comment policy: http://www.cdc.gov/SocialMedia/Tools/...

This video can also be viewed at
http://www.cdc.gov/lyme/videos/boulay...

velvetmagnetta
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by velvetmagnetta » Tue 30 Dec 2014 13:30

Thank you for posting this video.

I have, personally, been to many doctors and nobody has even thought to give me an MRI even with all my neurological symptoms. I had to pressure one of my doctors just to give an X-ray!

Are this guy's symptoms all consistent with a pituitary tumor? And shouldn't his symptoms be gone now that they have treated the cause? Is it possible he may have post-Lyme symptoms on top of having a pituitary tumor?

From the video, we know that at some point, he was told that all his symptoms were in his head. And the CDC is advocating that you get a second opinion - and yet, when you do, you are considered to be engaging in (and I quote) "healthcare-seeking behavior".

What should we do then? We are ill, doctors don't believe us. Should we see more doctors?

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ChronicLyme19
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by ChronicLyme19 » Tue 30 Dec 2014 16:10

OOOOO, this video gets under my skin. :evil:

On one hand I do agree with the video, you need to be ruled out for other conditions, you can't just self diagnose. You can have persistent/late stage borreliosis, you can have another medical condition, or you can have BOTH, or more than just two.

The problem I have with this video is the tone and the way it was done. It discredits those of us who do have persistent infections and still doesn't allow for any gray area in which people have Lyme and other medical conditions at the same time. Why does it have to be one or the other? Why can't we have people that fall into multiple categories?

I also have beef with this statement:
"See an infectious disease specialist who uses FDA-cleared, fully validated tests"
That statement is implying that the IDSA docs can 100% prove whether or not you have persistent Lyme and that the FDA approved tests actually work, and we all know well the tests sensitivity is completely SHIT. We all know most IDSA docs don't believe in persistent borreliosis.

I did follow this method and saw 15 different docs who checked me off their list and said move on. I was lucky enough that our IDSA doc in our area did correctly diagnose me with a persistent borrelia infection (She's one of the few IDSA docs that believe it can persist and will treat with longer rounds of abx). The problem was she stopped there and only treated with low doses of monotherapy abx. I gave that route 6 months and while it stopped me from getting worse, it also wasn't healing me. I didn't start getting better until all my health issues were addressed at the same time.

You have to find a doctor that is willing to find ALL the puzzle pieces, Lyme, co-infections, genetic conditions and other underlying medical problems. IDSA docs are trained to look for ONE cause of symptoms. ILADS docs are trained to find all the nails in your foot, not just one.

I'd also venture to say there are many more people with persistent TBDs that are not being properly diagnosed by IDSA docs than LLMDs that are missing other pieces of the puzzle. Doesn't mean LLMDs always find everything and it doesn't mean that some IDSA docs always don't, but my opinion is you have better odds with the LLMDs.

No matter what org your doc belongs to, if they aren't helping you find all the causes, get a second opinion from someone who will think critically and not just check you off a list.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Tue 30 Dec 2014 17:02

ChronicLyme19 wrote: On one hand I do agree with the video, you need to be ruled out for other conditions, you can't just self diagnose. You can have persistent/late stage borreliosis, you can have another medical condition, or you can have BOTH, or more than just two.

The problem I have with this video is the tone and the way it was done. It discredits those of us who do have persistent infections and still doesn't allow for any gray area in which people have Lyme and other medical conditions at the same time. Why does it have to be one or the other? Why can't we have people that fall into multiple categories?
Here's just one example of a person having both Lyme disease and a pituitary "tumor" (her quotes, not mine):

http://pituitary.mgh.harvard.edu/mljpit.htm
Non-secreting Pituitary 'Tumor', a Patient's Account

by Mary Lou Jepsen

[snip]

Lyme Disease

It was thought that I probably had Lyme Disease (it made sense with the Bell's Palsy of 9 months previous) and I was put on a course of Tetracycline and given another Lyme test whose result was 'indeterminant'. On the tetracycline I began to feel better! The joint pain slowly went away and my energy level came up some. After a month on the tetracycline, nearly all the joint pain was gone, and my sedimentation rate which had been up to 60 was down to 12.

Only a few days off of the month long course of tetracycline, the joint pain, fatigue and vomiting got worse. These symptoms had never been completely eliminated, but had improved a great deal during the tetracycline course. My energy in particular was far from normal, but I could work sometimes 8 hour days now. Also at this point, I hadn't had a menstrual period for 3-4 months. Apparently this can also happen with Lyme Disease. I saw an endocrinologist because my TSH level was just a sliver low, and my prolactin level was a little high (it would vary between 30 and 60 over the course of these several months). The pituitary dysfunction still wasn't clear, apparently Lyme Disease can give strange readings. I was put back on the tetracycline for another month. I improved, and towards the end of the month even the pain in my fingers disappeared. We thought I was cured! But alas, just a few days off the tetracycline and my joint pain was back in my fingers and toes and my sedimentation rate was climbing back up, it had been down to 10-ish while I was on the tetracycline.

The next month was consumed with a go around with various infectious disease specialists, a rheumatologist, the endocrinologist and so on. The infectious disease specialist doubted that I had Lyme, and thought that maybe I had just a string of different colds and flu, saying it was a bad flu season. In addition she thought that the arthitis might be a result of a possible parvovirus B19 episode in my youth. The rheumatologist doubted the Lyme diagnosis as well, and thought that maybe I was just getting rheumatoid arthritis. But, I still tested, on the Western Blot Lyme Disease Test, as indeterminate. It was concluded that before further diagnosis could be continued this question of Lyme Disease needed to be put to rest. If I was still ill after a one month course of intravenous antibiotics (Ceftriaxone, 1 gram every twelve hours), then more tests would be done. After this course my Sed. rate was back down again to 10ish (it had gone up while I was off the antibiotics). My joint pain disappeared. My energy level was improved, far from normal, but it was thought that my body had been through some trauma and it would take a while to get fully back to normal.

[snip]

In Retrospect

The doctors believe that I had the Lyme disease, that ear fungus, the cytomegliovirus of the kidney, all the 'colds', etc. because my immune system was effected by my lack of cortisol (my AM cortisol reading was below 1.0 just after the MRI came back positive, and has been even lower in subsequent months). So, my condition was difficult to diagnose because I also had Lyme Disease, which itself can mimic many diseases and conditions.
http://www.nytimes.com/2013/11/24/opini ... d=all&_r=0
Opinion

Bringing Back My Real Self With Hormones

By MARY LOU JEPSEN
Published: November 23, 2013

[snip]

I was not experimenting with hormone levels out of idle curiosity or in some kind of quirky science experiment. I was on hormone treatments because I’d had a tumor removed along with part of my pituitary gland, which makes key hormones the body needs to function.

[snip]

The growth that shut down my pituitary gland’s ability to produce hormones did so insidiously over many years. By my early 20s it was, I suspect in retrospect, causing misdiagnosis of symptoms that were most likely caused by lack of hormones like cortisol. No diagnosis was found, despite the efforts of many doctors. I was a doctoral student in electrical engineering at an Ivy League school, but was growing progressively worse. I routinely slept about 20 hours a day, lived with a constant blistering headache and frequent vomiting, and was periodically wheelchair-bound. Large sections of my skin cycled through a rainbow of colors and sores, half of my face wouldn’t move as if Novocain had been applied. I drooled. Worse: I felt stupid. I couldn’t subtract anymore. I couldn’t make a to-do list, let alone accomplish items on one. I recognized that I wasn’t capable of continuing in graduate school. Utterly defeated, I filled out the paperwork to drop out.

Then, in the summer of 1995, my brain tumor was discovered. Diagnosis can often take this long. This might be because of the insidious and chameleonlike nature of this disease. The tumor was not malignant, but it had disrupted my pituitary function. The symptoms are general, confusing, escalate slowly over years and can be easily misinterpreted.

[snip]
I definitely agree that any given person can be dealing with more than one health challenge at a time, which does indeed tend to complicate things.

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ChronicLyme19
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by ChronicLyme19 » Tue 30 Dec 2014 17:34

Ah, if you don't mind I'm going to steal that link and include it in my comment on the youtube. I think it will help open people's eyes. The CDC saying people's conditions are always due to ONE factor is just as bad. Why can't the discussion be in shades of gray? This myopic thinking doesn't do anyone any good. The healthcare systems are certainly broken for people with multiple issues.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Tue 30 Dec 2014 18:07

Great idea! I too am becoming more than a bit frustrated with the "either/or" mindset.

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Wed 31 Dec 2014 10:54

Just to clarify a bit. I firmly believe (having learned from personal experience) that doctors can and do make mistakes -- whether or not they specialize in the treatment of Lyme disease.

Here are two very different reviews for the same doctor. I'm deliberately leaving out the links and name of the doctor because people can post anything they like on the internet, and it may not always be completely true.
7/12/2011

Several years ago i went to see Dr. N for layered problems. I was misdiagnosed with chronic Lyme disease and given Chelation therapy,(the administration of chelating agents to remove heavy metals from the body..) The real problem was leaking silicon implants. The Chelation therapy only amplified the problems causing me to become more and more ill. My pain levels became so intolerable that he eventually put me on Fentanyl patches,( Fentanyl is approximately 100 times more potent than morphine), which i was on for 8 months. Despite this heavy medication my pain only grew, and my depression deepened as my pain progressed. With no hope in sight i really just wanted to die to end the constant pain. I was experiencing loss of mobility as my brain chemistry became more and more compromised, and even holding simple conversations was very difficult as i had severe aphasia. There were many times when i could not get the signal from my brain to my legs and could not walk. Dr. N continued to prescribe unconventional therapies, and by then drugged and compliant i went along with them. Finally he gave me several syringes and three vials of heparin, after showing me how to inject myself, he sent me home with the advice to inject heparin into my stomach twice a day... to thin my blood and help with the pain. Heparin is widely used as an injectable anticoagulant. I was given no advice, shown no videos, or warnings about the dangers of blood thinners such as heparin. Fortunately i had a severe pain reaction at the site of the injection, so severe that i thought i had a kidney stone. So off i went to the hospital. After i told the E.R. Doctor about Dr. N's non conventional treatments and after blood work showed the level of heparin in my system, the ER doctor warned me not to go back to Dr. N, in his words, "I seldom quarterback another doctor, but his methods are so far beyond conventional protocol that i am concerned for your safety." I did have to see Dr. N for prescription refills until i could get into a doctor at xxx, but canceled any further therapies or treatments. I told Dr. N about my reaction to the heparin and he was quite dismissive. When i finally got into another doctor, Dr. yyy, at zzz, we went back to the drawing board, testing for Lupus, etc, and finally getting a chest MRI which showed that both of my silicon implants were in a state of collapse. Despite the poor prognosis, i have continued to heal over the last 5 years since those implants were removed. Now i am not one to challenge unconventional treatments, i am a firm believer that homeopathy, diet, attitude, and other non conventional therapies have helped me tremendously. What i do assert, is this, Dr N acted in a way that was both dangerous, and reckless in his treatment. I feel very fortunate that i survived that time period, my illness, my depression, the months of heavy narcotics, and Dr. N. Please do your research, do not assume that just because a Dr tells you a treatment will help, that it is truth. I believe that Dr N has a good heart, and good intentions, i also believe that he has lost his way. Maybe he prescribed the heparin to assist me in dying, as i had long expressed a desire to die rather than live with the degree of pain and suffering, if so, he should have told me that was the choice i was making. Maybe he really did believe that thinning my blood would help me, though i don't know any sound medical reason for this. I can never know what is in another's mind, all i know is that for some reason i survived, and for that i am grateful.
March 3, 2011

Just to recap...I was referred to Dr. L (a chiropractor/nutritionist) who said in our first 20 minute consultation she thought I might Lyme. Although, I chose to move my care, if it was not for her, I don't believe I would be where I am today. She is amazing and has an incredible practice. If you just don't feel good and can't figure out why I would highly recommend seeing her. Once I felt that Lyme disease was the correct diagnosis, I had done enough research to know I needed an LL doctor, which is lyme literate doc. Those doctors are hard to come by and hard to find based on the fact that they often come under attack for their treatment. I went through the channels to get access to the "super secrete list" and found there were only two LLMD/LLND's in xxx. I chose the lesser known of the two and have been blessed by her knowledge and care ever since. ... She in turn referred me to Dr. N in yyy as a primary care doctor. This was after my pc at the time told me my positive test results weren't true, that I didn't have Lyme, or anything seriously wrong with me at all. So glad I stood up for myself. Dr. N has been incredible. In fact, he is so well versed in Lyme that he and my LLND are treating my Lyme together. He did my port and does my IV's. He is the one that ordered this latest and greatest test.
Despite Dr. N and her LLND working together, this person was still struggling with health issues in March 2014:
Unfortunately things with my health have had little improvement since I began treatment in 2010. Some things have improved, others have left and come back, some have gotten worse and even some new symptoms have appeared.

[snip]

I am currently still at a loss over what to do next for my treatment. I believe my gut has been destroyed by all of the antibiotics I've taken these past few years, and for that I really need to try and give them a rest for now.

velvetmagnetta
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by velvetmagnetta » Wed 31 Dec 2014 15:19

I think it's time for all sides to admit that none of us really know what's going on - not ISDA, not CDC, not ILADS, or LLNDs, or LLMDs - and begin to work together to bring our knowledge and experiences with all these treatment failures together and learn from them!

The Borrleia burgdorferi spirochete is a very advanced bacteria that has evolved many ways of evading the natural immune system. Perhaps one of those ways is causing pain in the body when it is killed to stop immune cells from killing it. Maybe the pain after treatment is from the damage incurred by the spirochetes on the nerves that takes a very long time to heal. I seriously doubt this, but maybe the infection remains after treatment.

The point is, no one really knows. The IDSA tells us if we have pain after treatment, well it's not from Lyme disease, it's from some other disease - probably depression. Yes, they tell us our joints and nerves and muscles hurt because we're simply just too depressed.

How does this help anyone?

If the IDSA and the CDC really believe all these people suffering never even had Lyme disease to begin with, then what do they think they all have? Nothing? If it isn't Lyme disease, then I think we have an even bigger problem because we don't actually know what pathogen is infecting all these people making them miserable and in pain and disabled and depressed!

CDC and IDSA, brushing us off - your work isn't done yet! Sick people are not just going to go away or get spontaneously better. That's why we have the damn IDSA and CDC for god's sake!

If it's not Lyme, then what is it? And can you fix it? Don't you take any pride in your work?

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Wed 31 Dec 2014 19:02

velvetmagnetta wrote: Maybe the pain after treatment is from the damage incurred by the spirochetes on the nerves that takes a very long time to heal. I seriously doubt this, but maybe the infection remains after treatment.

The point is, no one really knows. The IDSA tells us if we have pain after treatment, well it's not from Lyme disease, it's from some other disease - probably depression. Yes, they tell us our joints and nerves and muscles hurt because we're simply just too depressed.
You're absolutely right that no one really knows for sure at this point in time. I think it's also important to acknowledge that the reason(s) for continued ill health may well vary from person to person, as Dr. Adriana Marques has pointed out in this article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430045/
http://europepmc.org/articles/PMC2430045
Infect Dis Clin North Am. Author manuscript; available in PMC Jun 1, 2009.

Published in final edited form as:

Infect Dis Clin North Am. Jun 2008; 22(2): 341–360.
doi: 10.1016/j.idc.2007.12.011

PMCID: PMC2430045

NIHMSID: NIHMS52285

Chronic Lyme Disease: An appraisal

Adriana Marques, MD

Laboratory of Clinical Infectious Diseases, National Institute of Allergy and Infectious Diseases, National Institutes of Health, 10/11N234 10 Center Dr., Bethesda MD 20892;
Snippets:
Post-Lyme Disease Syndrome.

Many studies have shown that Lyme disease is treated successfully with antibiotics in the majority of cases, and patients with objective evidence of treatment failure are rare with currently recommended regimens [11–14]. Patients with late manifestations can have a slower response to therapy, sometimes taking weeks or months to recover [15–23]. Some patients may have incomplete resolution due to irreversible damage, as can occur in facial nerve palsy with residual facial weakness. A few patients may develop antibiotic-refractory Lyme arthritis, when synovitis persists for months to years after antibiotic therapy, it is most likely due to autoimmunity triggered by the infection [24].

A minority of patients treated for Lyme disease will have persistent or relapsing non-specific symptoms (such as fatigue, musculoskeletal pain, and cognitive complaints) after receiving an adequate course of antibiotic therapy. In the absence of another condition that would explain these non-specific symptoms, such patients are classified as having post–Lyme disease syndrome (Table 3). The best estimates of the prevalence of post-Lyme disease syndrome come from studies of patients with erythema migrans who received appropriate antibiotic treatment. From 10–20% of such patients have persistent or intermittent subjective symptoms of mild to moderate intensity 12 months after completion of therapy (Table 4). The most common post-Lyme disease symptoms are fatigue, arthralgias, myalgias, headache, neck stiffness, paresthesias, sleeplessness, irritability, and difficulty with memory, word finding, and concentration [12, 13, 25–28]. The appearance of post-Lyme disease symptoms seems to correlate with disseminated disease, a greater severity of illness at presentation, and delayed antibiotic therapy [12, 29–33]; but not with the duration of the initial antibiotic therapy [13, 23]. Children appear to be less likely to develop post-Lyme disease symptoms [34–42].
In theory, each and every person diagnosed with PLDS or PTLDS has had the benefit of a full work-up by one or more qualified medical professionals to rule out other possible causes for lingering (and sometimes worsening symptoms) after Lyme disease has been treated. From what I've read and heard over the past few years, the reality can be very different -- with more than a few doctors eager to escort patients out the door with a prescription for an antidepressant and/or a diagnosis of chronic fatigue syndrome or fibromyalgia.
The possible causes of post-Lyme disease symptoms.

The mechanisms underlying post-Lyme disease symptoms are not known and are likely to be multifactorial. Possible explanations include persistent infection with B. burgdorferi, other tick-borne infections, part of the expected resolution of symptoms after treatment, post-infective fatigue syndrome, autoimmune mechanisms, and intercurrent conditions.
And just for the record, here's the CDC's official position on post-treatment Lyme disease:

http://www.cdc.gov/lyme/postLDS/index.html
Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research, and clinical studies to determine the cause of PTLDS in humans are ongoing.

RitaA
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Re: CDC Video: "Feeling Worse After Treatment?"

Post by RitaA » Wed 31 Dec 2014 20:21

Here's some general information related to diagnostic errors in medicine:

http://webmm.ahrq.gov/perspective.aspx?perspectiveID=36
February 2007

Diagnostic Errors in Medicine: What Do Doctors and Umpires Have in Common?

Perspective

by Mark L. Graber, MD

[snip]

Unfortunately, we face a problem in medicine: However good "fast and frugal" decision-making may be, it is not good enough—especially when we need high-stakes decisions to be right 100% of the time. This shortcoming translates into patients whose treatable conditions are missed or misdiagnosed, and patients harmed or killed by tests or treatments they never really needed.

Knowledge deficits are rarely the cause of cognitive errors in medicine; these errors more commonly involve defective synthesis of the available data.(9) More than 40 cognitive pitfalls have been described.(10) In our studies (9), the three most common pitfalls were:

Context errors: The physician inappropriately limits consideration to only one set of diagnostic possibilities, in lieu of others. For example, gastrointestinal causes are not considered for a patient presenting with chest pain.

Availability errors: The physician chooses the most likely diagnosis over conditions that are more rare, or they choose conditions they are most familiar with. An example would be the patient with a dissecting aortic aneurysm whose chest pain is attributed to a musculoskeletal strain.

Premature closure: Once a plausible condition is identified, other possibilities are not fully considered; we just stop thinking.
Edited to add:

http://www.longwoods.com/content/20967
Healthcare Quarterly, 12(Sp) August 2009: 55-61.doi:10.12927/hcq.2009.20967

Self-Reported Medical Errors in Seven Countries: Implications for Canada

[snip]

Discussion

This study confirms that self-reported medical error is a common problem in Canada and other comparable industrialized nations. While the rate of self-reported error ranged from 12 to 20%, Australia, the United States and Canada ranked the worst among the seven countries, which closely follows a 2005 survey of patient perceptions of safety in which these same three countries were the worst of six compared countries (Davis et al. 2006).
http://www.cmaj.ca/content/171/2/123.2.full
CMAJ July 20, 2004 vol. 171 no. 2 doi: 10.1503/cmaj.1041037

Synopsis

Medical error affects nearly 25% of Canadians

Louise Gagnon
Author Affiliations

Ottawa

Medical errors in Canada are common, and there are significant regional disparities in how the health care system performs, according to a June 9 report by the Canadian Institute for Health Information (CIHI).

Health Care in Canada 2004, CIHI's annual report on the health care system, found almost 1 of every 4 Canadians (5.2 million people) say they or a family member has experienced a preventable, adverse event in 2003.

The adverse events range from receiving the wrong dose or type of medication, to having foreign objects left in the body after surgery. One in 9 adults with health problems said a health professional or hospital gave them the wrong medication or dosage, while 1 in every 6667 surgical patients had a foreign object left in their body. The errors are associated with 1.1 million extra days in hospital.

[snip]
Last edited by RitaA on Wed 31 Dec 2014 22:34, edited 1 time in total.

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