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Old 12-14-2008, 08:15 PM
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Justin,

I think most Americans would agree that vaccines have helped eradicate nasty diseases. And like you, today, in other areas, I am looking for answers to confirm what I think are "facts. "

There are more than a few problems with the way in which our governmental bodies track clinical information (notably the FDA and the CDC), e.g., their tracking, tabulating and reporting of “meaningful” statistics. And the CDC’s interpretation of “what matters” is sometimes very different than what keeps spine patients awake at night.

Let me give you some concrete specific examples of how “meaningful” information falls through the cracks:
  • Lydia (an ADRSupport member) was in a clinical trial (cervical devices) and experienced serious complications. She then found out she was not “really” in the trial; perhaps because of the complications. Will her story be reported to the FDA? Well, it was not. I’ll let her explain in her own words (she already shared much of this in her topic).
  • Several months ago, Susan returned from Germany after having multi-level ADR and fusion. Her pain is the SAME as it was before surgery, has become very ill and has since found out she has tested positive for mycoplasma pneumonia (very high titer). Now that she learned about this serious condition, she can’t find a doctor to treat her for her systemic infection. Should she call the CDC or FDA? They don’t care! Even though mycoplasma pneumonia kills, and can cause COPD, it is not “tracked” as a disease.
  • The CDC is overwhelmed, as they are understaffed and overcommitted. I learned this in 2006 when I had several conversations with a CDC epidemiologist. They are on public record indicating this, as well as their underreporting of certain diseases like Lyme. There are tons of references on this; so I won’t provide links now. I got it from the horse’s mouth and read it elsewhere in many places.
When pharmaceutical companies have employees at the FDA in Washington, we should all be a little nervous – especially when it comes to reporting the facts about clinical outcomes with the new drugs. Especially vaccinations!

It’s always a good practice to check with “authoritative” sources of information; but those reliable sources are hard to find. That’s why I talk to patients and doctors from all over, as I almost always learn new information. No, I know this is not research, per se; but I gather, edit and share as a public service. And that’s what this site is about! Collecting information from many different places, I am aspiring to be a responsible editor and journalist. So, we do share the sense of urgency and ethics about sources -- for that I am grateful to your reminder.

We are going off track here. Can we get back to spinal diseases?! The assertions you are denigrating... (the pathology of spinal diseases, reported by both domestic and international authors)...why the objection to anyone’s assertion that pathogens can cause spinal problems? This is a fact admitted by many brave doctors! E.g., see here for the latest post on spinal diseases….though the article from Dr. Borenstein is appr. five years old and has been erased by GWU. Though the notion of infection as the cause of disease is admitted by many doctors, this seems to be your big objection, though you avoided addressing this for some reason. Wuddupwiddat?!

See the article below, which I read some time ago. It’s troubling, and certainly does not jive with the CDC’s version. How sad indeed -- but let's get back on topic, please.
_________________________________________________

The HPV Vaccine Gardasil — A Public Health Experiment?
By Michael Arnold Glueck

http://www.JewishWorldReview.com

Judicial Watch, using records obtained under a May 2007 Freedom of Information Act (FOIA) request, has summarized the approval process, side effects, safety concerns, and marketing practices related to the human papillomavirus (HPV) vaccine Gardasil.

It calls these a "large-scale public health experiment."

As noted in a release by the The Asssociation of American Physicians and Surgeons (AAPS) one of the most troubling findings is 78 cases of outbreaks of warts following the vaccine in women already infected without knowing it. In addition to genital warts, some patients experienced massive outbreaks on the face, hands, or feet, sometimes caused by strains not included in the vaccine.

Additionally, the vaccine could increase the incidence of CIN 2/3 (cervical endothelial neoplasia in moderate stage) in women who had persistent infection with "vaccine-relevant" HPV strains at baseline. A chart in a report of the Vaccines and Related Biological Products Advisory Committee (VRBPAC) showed an efficacy rate of -44.6% (minus sign) in subjects already exposed to "relevant HPV types."

On June 25, 2008, the FDA denied Merck's application to expand marketing of Gardasil to women aged 27 through 45. The FDA refused Judicial Watch's request for a copy of the letter to Merck, stating that it may be available under FOIA.

Merck also failed to win approval to expand the vaccine to more strains and has reportedly dropped plans to do so.

In its report to the FDA, Merck noted that "it is not known whether Gardasil can cause fetal harm when administered to a pregnant woman." It reported that 27% of pregnant women experienced an adverse reaction upon receiving the vaccine, and the Vaccine Adverse Event Reporting System (VAERS) contains 45 cases of spontaneous abortion following Gardasil.

A pre-condition for fast-tracking Gardasil was a requirement for a safety surveillance study, which will not be complete until June, 2009. Not to be deterrred intensive marketing continues by Merck.

A total of 8,864 VAERS reports have been filed, including 38 of Guillain-Barre syndrome and 18 deaths, 11 occurring within one week of receiving the vaccine. It should be noted that association does not prove causality.

In an article that appeared in MedScape on July 26, and was quickly taken off the website, Diane Harper, M.D., a principal chief investigator in clinical HPV trials, was quoted as saying, "The side effects that have been reported are real and they cannot be brushed aside." She suggested that physicians not vaccinate patients with personal or family histories of the more serious complications, which have included neurologic disorders, thromboembolism, and autoimmune conditions.

"The cause of recent complications remains a mystery and it is difficult to know whether they are linked to vaccines," the article stated.

Two physicians, a cardiologist and a rheumatologist, say they regret their decision to immunize their 17-year-old daughter and will not encourage his younger daughters to receive the vaccine. After being vaccinated, their eldest went from being a healthy athlete to a chronically ill patient. He worries that other girls may be struggling with immune damage, feeling achy and unwell, but going undiagnosed and unreported.

Gynecologist Christiane Northrup, M.D., appearing on the Oprah Winfrey Show, told viewers that she wouldn't advocate vaccinating her daughters, and that medical dollars were better spent elsewhere.

To add more future fear to the folly the FDA and CDC issued a joint statement reassuring the public and physicians of the vaccine's safety.

What were they thinking?
_______________________________________

Also, see more links and the history of the investigation process uncovered by Judicial Watch:

http://www.judicialwatch.org/gardasil

Phew! At least someone is minding the store! Good Lord. Go non-profits!!!
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  #12  
Old 12-17-2008, 01:46 PM
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Rich... I've finally had some time to reply to your post. I'll ignore the HPV article because it is poorly written and all the adverse reactions mentioned on Judicial Watch were included in the CDC's review and July 2008 report. So, I'll jump right into spine.

Your quotes are in RED and my responses are in BLACK.


Justin,

I think most Americans would agree that vaccines have helped eradicate nasty diseases. And like you, today, in other areas, I am looking for answers to confirm what I think are "facts. "

There are more than a few problems with the way in which our governmental bodies track clinical information (notably the FDA and the CDC), e.g., their tracking, tabulating and reporting of “meaningful” statistics. And the CDC’s interpretation of “what matters” is sometimes very different than what keeps spine patients awake at night.

Let me give you some concrete specific examples of how “meaningful” information falls through the cracks:
. Several months ago, Susan returned from Germany after having multi-level ADR and fusion. Her pain is the SAME as it was before surgery, has become very ill and has since found out she has tested positive for mycoplasma pneumonia (very high titer). Now that she learned about this serious condition, she can’t find a doctor to treat her for her systemic infection. Should she call the CDC or FDA? They don’t care! Even though mycoplasma pneumonia kills, and can cause COPD, it is not “tracked” as a disease.

Rich, I am sorry to hear that Susan has been diagnosed with mycoplasma pneumonia. Mycoplasma pneumonia is a common cause of community-acquired pneumonia and in almost all cases it resolves on its own. A cough that has become persistently worse for longer than ~3-4 weeks should be suspected as mycoplasma pneumonia (of course, other factors like fever, chills, etc.). This bacterial pneumonia is transmitted via aerosols droplets (coughing).

I’m sorry that Susan’s pain is the same. However, I do hope you are not implying that the culprit of her pre-op pain is due to Mycoplasa pneumoniae. I really don’t understand why you say that she can’t find a doctor to treat her when this is an easily treated cause of community-acquired pneumonia. This is treated ALL the time in hospitals across the US, and only about 5% of patients with Mycoplasa pneumoniae actually develop pneumonia. Extrapulmonary infections due to Mycoplasa pneumoniae are a rare complication—systemic sequelae is rare and do not kill either in the majority of cases. Antibiotics readily treat and are very effective in this type of community-acquired pneumonia. I’m not sure why the CDC or even the FDA (????) would be called in this case—she should go to the closest hospital for treatment.

You seem to suggest that Mycoplasa pneumoniae is some rare bacteria that is overlooked by modern medicine and people can’t find (or are refused) treatment when they are diagnosed. This couldn’t be further from the truth and is a very misinformed opinion.



. The CDC is overwhelmed, as they are understaffed and overcommitted. I learned this in 2006 when I had several conversations with a CDC epidemiologist. They are on public record indicating this, as well as their underreporting of certain diseases like Lyme. There are tons of references on this; so I won’t provide links now. I got it from the horse’s mouth and read it elsewhere in many places.

I would like the contact information for this CDC epidemiologist when you get a chance (of course, by private messaging). I would like to see your references by the way.

It’s always a good practice to check with “authoritative” sources of information; but those reliable sources are hard to find. That’s why I talk to patients and doctors from all over, as I almost always learn new information. No, I know this is not research, per se; but I gather, edit and share as a public service. And that’s what this site is about! Collecting information from many different places, I am aspiring to be a responsible editor and journalist. So, we do share the sense of urgency and ethics about sources -- for that I am grateful to your reminder.

I commend your efforts talking with patients and pursuing “new” information. However, at the end of the day anecdotal evidence is just that—anecdotal. Also, if you don’t truly understand the transmission of disease and how they “work” at a pathophysiological level it is easy to tie things together and make them “make sense.” Just because someone repeats something over and over, doesn’t mean it is true.

We are going off track here. Can we get back to spinal diseases?!
The assertions you are denigrating... (the pathology of spinal diseases, reported by both domestic and international authors)...why the objection to anyone’s assertion that pathogens can cause spinal problems? This is a fact admitted by many brave doctors! E.g., see here for the latest post on spinal diseases….though the article from Dr. Borenstein is appr. five years old and has been erased by GWU.


I would love to talk about spinal disease! I never objected that pathogens can cause spinal problems. You do understand that doctors know spinal pathology is multifaceted, and is not only the result of trauma right? Again, you state the article by Dr. Borenstein has been erased like there is some conspiracy theory to cover up that Lyme disease could be implicated in cervical and lumbar pathology. I have never disputed this.

I’m still confused as to who the “brave” doctors are.


Though the notion of infection as the cause of disease is admitted by many doctors, this seems to be your big objection, though you avoided addressing this for some reason. Wuddupwiddat?!

I am sorry I don’t know how to say this any other way, but the above is laughable. I never objected that infection is a cause of disease…I’m not sure where you are getting this. It makes absolutely NO sense. Infection (among other factors [trauma, genetics, etc.]) is what directly causes the pathology that doctors treat. Doctors would be out of business if this wasn’t the case. Your statement is beyond confusing…

Let me define disease for you:

"A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms."

I initially replied to some of your comments such as “vaccines do kill.” Such a statement without context needs to be addressed, and I did so.

Anyway, what I did say is that in your thread “Spinal Diseases: Mycobacterial Causes” contained a “cherry-picking” of articles that I found amusing.

Remember: correlation does not imply causation. I don’t think I can stress this enough. The sentences in the studies you posted in that thread that you chose to emphasize demonstrate your “layman /unscientific” understanding of microbiology and pathology (I don’t mean this is a bad way at all).

For example, in your first post of the thread the study entitled “An Unusual Case of Chronic Meningitis” you chose to underline “gram-negative coccobacilli in the CSF.”

Rich, a gram stain is used to classify bacteria into classes. Gram-positive and gram-negative refer to the class. Bacteria are also classified by shape and the form of respiration (aerobic or anaerobic) that they use. Just because it is a gram-negative bacteria and a specific shape, a coccobacillus, doesn’t mean it is inherently more infectious.

In another post you underlined “Gram stain showed numerous white blood cells and fusiform Gram-negative bacilli.” Rich, again, this is identifying the bacteria in question as well as some of its physical characteristics. The presence of white blood cells is not a unique characteristic in this case either—this is how our immune system works—it fights infection with such cells as white blood cells. Another thing emphasized was “anaerobic bacteria”—these bacteria that find ways to survive without oxygen are implicated in not only infections of the spine but numerous other pathogens that afflict humans—and guess what, they like to hide out in places like joints because they are looking for anaerobic environments in which to thrive.

In another study, you emphasized “Incidence data from our institution reveal that pyogenic facet joint infection is not a rare condition, representing approximately 20% of all pyogenic spinal infections over the last 10 years.” I’m not sure what you are getting at emphasizing this, as this is what the authors are looking at—the percentage of cases of pyogenic facet joint infections in relation to all pyogenic infections of the spine.


A while back, I found this amazing article (attached). After reading it again today, I found more gems of intelligence that helped me connect more dots, while also validating some of my grandiose conclusions about health issues facing many patients within this community.

It's "Lyme" disease, based on where the disease was discovered in CT, 35 years ago. Concerned parents got together to discuss the arthritis-like symptoms had afflicted their children. Their common complaints? Back and joint pain!


Honestly, what other symptoms would patients complain of besides back and joint pain? I’m not talking about fever, malaise, etc. Back and joint pain are common arthritic-like complaints.

A patient referred me to this interesting research paper that specifically implicates some of these little buggers in everything from joint disease to arthritis. Surprisingly, this document is eleven years old and not easily found. The research was funded by the NIH, it is found on the CDC site: http://www.cdc.gov/ncidod/eid/vol3no1/baseman.htm

It is notable that the NIH now provides little funding for this kind of research; I heard its actually none. I'll see if I can confirm this. Here’s an excerpt relating to a recent post in another forum:

Can you confirm this? Where are your sources? Yes, funding for spine pails in comparison to heart or cancer research, but no one here is disputing this.

Don, just to nitpick...these aren't theories. I know you this, but it's interesting that the "standard of care" regards these facts as such...

This is a really interesting article on reactive arthritis. For those of you that may have unusual pain syndromes (before AND/OR after surgery), please read these carefully!

http://www.drmirkin.com/joints/J103.htm

No, not everyone actually has ankylosing spondylitis -- but the overall context of all these articles in this topic illuminate the gaping hole in spinal diagnostics.


What are the gaping holes of diagnostics that you readily talk about, but never explain? You realize that ankylosing spondylitis has very specific physical and laboratory characterics and is often diagnosed based on history and physical alone?

Rich, you have focused particularly on mycoplasmas like atypical pneumonia (M. pneumoniae), bacteria that lack a cell wall, and also on Lyme disease. Just because organisms like mycoplasmas lack cell walls doesn’t make them inherently more infectious than other pathogens. Actually, many other viruses and bacteria have extremely more sophisticated ways of causing disease and avoiding our immune response.

Anyway, I’ll give you some information about your spirochete of choice, Lyme—some of which you know and a lot that I don’t think you have not stumbled upon. Lyme disease was discovered in Connecticut during the 1970’s when there was an epidemic of arthritis there. Lyme is actually a spirochete, Borrelia burgdorferi, and is transmitted from rodents to people via the Ixodes deer ticks—these ticks may also be infected with Ehrlichia and Babesia
.



Lyme can involve multiple organs symptoms and is divided into three stages:

Stage 1: Spirochetes multiply and spread in the dermis creating the well known “bulls eye” on skin (erythema chronicum migrans). Fever/lymphadenopathy are also usually present.



Stage 2: This is the early dissemination stage. Spirochetes spread through the blood and cause secondary skin lesions, lymphadenopathy, migratory joint and muscle pain, cardiac arrythmias, and meningitis. Cranial nerves are often involved.

Stage 3: This is the late dissemination stage 2 or 3 years after the initial tick bite. Chronic arthritis (sometimes with damage to large joints), neuropathy and encephalitis that can be debilitating are seen.



Pathogenesis: B. burgdorferi does not produce lipopolysaccharide to produce an immune response. It uses bacterial lipoproteins that bind to toll-like receptor 2 expressed by macrophages. The response is to release proinflammatory cytokines, IL-6 and TNF.

The adaptive immune response to Lyme is well known: it is mediated by CD4+ T-helper cells and B-cells. B. burgdorferi escapes the antibody response through antigenic variation—this means it changes its antigenic epitopes in an effort to avoid our immune system.

The characteristic skin lesion initially present (in most cases, about ~20% don’t exhibit this characteristic) and the symptoms displayed later in the disease process include carditis, musculoskeletal pain, meningitis and polyneuropathy are well known.

B. burgdorferi does not have a mechanism that helps to protect it from antibiotic therapy—it is only seen extracellularly in affected tissues. This means it has NOT been shown to “hide out” in intracellular locations, thereby evading antibiotic exposure.

Something to point out is that B. burgdorferi spreads via the blood within days to weeks after the initial tick bite and characteristic erythema migrans. This is where patients get severe headache, fever, chills, migratory musculoskeletal pain, muscle pain, fatigue etc...these symptoms are intermittent and change often.

After a few weeks or months, patients that are not treated with antibiotics can start displaying neurological deficits (meningitis, bilateral Bell’s palsy, radiculoneuropathy, ataxia, etc.). In the States, patients usually present with meningitis (CSF demonstrates lymphocytic pleocytosis, elevated protein levels and more or less normal glucose), radiculoneuropathy, and facial palsy. Even fewer patients demonstrate cardiac involvement when they go untreated.

Patients that go untreated can demonstrate persistent infection. It is well documented that those that do not receive antibiotic therapy, more than half will develop frank arthritis. Mostly the knees and “big” joints are affected. A small percentage of cases of cases that have large joints affected may become chronic and lead to erosion of say cartilage and bone in the knees. These patients have a higher frequency of class II major histocompatibility complex alleles associated with rheumatoid arthritis (HLA-DRB). In these genetically susceptible patients, it has been postulated that autoimmunity may develop within the proinflammatory areas of the joints because of molecular mimicry (this is similar to what is seen in rheumatic heart disease, but I won’t bore you with the details).

The tests for rheumatoid factor or antinuclear antibiotics usually give negative results. Chronic neurologic involvement may also been seen months/years after the initial tick bite (sometimes after long periods of latent infection). The most common form of chronic CNS involvement is encephalopathy (affects memory, mood, sleep) that is accompanied by axonal polyneuropathy (distal paresthesias or spinal radicular pain).

EMGs are abnormal in those demonstrating polyneuropathy. This can include proximal/distal nerves.

Differential diagnosis can cause confusion regarding Lyme disease. Prolonged infection oligoarticular Lyme arthritis most resembles reactive arthritis. It is easy to mistake Lyme disease for chronic fatigue syndrome or fibromyalgia. I know some physicians that have treated Lyme patients to have the difficulty confounded by the fact that a small percentage do in fact develop these chronic pain or fatigue syndromes soon after Lyme disease (note: Lyme is not causing these to develop). However, patients with chronic fatigue syndrome lack joint inflammation and have a normal neuro exam.


Quote:
Below is an Algorithm for Testing for and Treating Lyme Disease published by the American College of Physicians:






Lyme disease is usually diagnosed by the recognition of a characteristic clinical picture with serologic confirmation. Although serologic testing may yield negative results during the first several weeks of infection, most patients have a positive antibody response to B. burgdorferi after that time. The limitation of serologic tests is that they do not clearly distinguish between active and inactive infection. Patients with previous Lyme disease—particularly in cases progressing to late stages—often remain seropositive for years, even after adequate antibiotic treatment. In addition, about 10% of patients are seropositive because of asymptomatic infection. If these individuals subsequently develop another illness, the positive serologic test for Lyme disease my cause diagnostic confusion. Conversely, in rare instances, patients who receive inadequate antibiotic therapy during the first several weeks of infection may subsequently develop subtle joint or neurologic symptoms but are seronegative. The important point is that sernegative Lyme disease is usually a mild, attenuated illness that responds well to standard courses of antibiotic therapy. Serologic testing for Lyme disease is recommended only for patients with at leaset an intermediate pretest probability of Lyme disease, such as those with oligoarticular arthritis. Patients with pain or fatigue syndromes alone display a higher probability of a false-positive serologic result than that of a true-positive result.

For serologic analysis of Lyme disease in the US, the CDC recommends a two-step approach in which samples are first tested by ELISA and equivocal or positive results are then tested by western blotting. During the first month of infection, both IgM and IgG responses to the spirochete should be determined, preferably in acute-phase samples, whereas about 70-80% have a positive response during convalescence (2 to 4 weeks later). After 1 month of infection, by which time most patients with active Lyme disease have disseminated infection, the sensitivity and specificity of the IgG response to the spirochete are both very high—in the range of 95% to 99%—as determined by the two-test approach of ELISA and western blot. At this point and thereafter, a single test (that for IgG) is usually sufficient. In persons with illness of >1 month’s duration, a positive IgM test result alone is likely to be false-positive and should not be used to support the diagnosis. According to current criteria adopted by the CDC, an IgM western blot is considered positive if two of the following three bands are present: 23, 39, and 41 kDa. However, the combination of the 23- and 41-kDa bands may still represent a false-positive result. An IgG blot is considered positive if 5 of the following 10 bands are present: 18, 23, 28, 30, 39, 41, 45, 58, 66, and 93 kDa.

Several second-generation tests that use recombinant spirochetal proteins or synthetic peptides have shown promising results. For example, an IgG ELISA employing a 26-mer peptide from invariant region 6 (IR6) of the V1sE lipoprotein has a sensitivity and specificity similar to those achieved with the IgM IgG two-test approach using sonicated whole spirochetes. However, the IR6 ELISA has a limitation similar to that affecting standard serology, in that a positive test result does not distinguish clearly between active and past infection. The IR6 ELISA may be of value with regard to European as well as American strains of the spirochete.

Twix, this is not boring at all. On the contrary -- it's validation. This year, about half the patients I've spoken to on the phone recall a time in their lives when they had some other serious health issue that MAY have started the degenerative process in the spine. Of these serious events, the ones that are most often mentioned are meningitis and Lyme disease.

Again correlation does not equal causation.

Plain old "vanilla" blood tests usually reveal "boring" results. You may want to consider getting screened for the mycoplasmas and Borrelia, though most doctors will be resistant to such requests. Why they are is a mystery, given the ample clinical evidence presented internationally (some in this topic).

Why “are doctors resistant to such requests” as you state? Again you state something as if it is fact, but rather it is your opinion. If a doctor does not suspect Lyme disease, why in the world would they screen for Lyme? Medicine doesn’t work like this. Every clinical decision is based on a working diagnosis. You act as if physician are purposely missing these cases and are not working up patients properly. This is a gross overgeneralization from your limited experience with Lyme. I know you are going to state a bunch of anecdotal evidence to prop up your statement, but you don’t really understand the decision making behind clinical patient evaluations by physicians.

Lisa, well said. Many spine patients do not have a clear picture of the disease factors causing their pain. And still others don't long after surgery -- as this recent abstract illustrates. Here, we see no less than THREE pathological conditions contributing to the poor patient's problem (IMHO, all bacterial; some are gram negative bugs).

Once again, your opinion is wrong. The “bugs” listed below in the quoted study are not Gram negative. Staph is one of the most abundant organisms and is Gram +. Pneumocystis jiroveci pneumonia is a fungus that is opportunistic. This fungus presented in this patient because the patient was on the extremely strong anti-TNF-alpha that are commonly used in patients with arthritis. These drugs extremely compromise the immune system, so it is not unusual to see the patient subsequently have an opportunistic infection like Pneumocystis jiroveci pneumonia.

This is sad to read, but may be progress in terms of focusing on the pathology of disease. Can you find the three!?

Once again, the US medical system is being outdone by countries who focus on the cause of disease. Most of these "diagnostic" studies are published from overseas. It really gets me mad!


Explain (in detail, with evidence and not opinion) how we are being out done by other countries "that focus on disease?" How does the US not focus on disease. This is yet another overgeneralization based on your own opinion.

Quote:
Delayed spinal infection after laminectomy in a patient with rheumatoid arthritis interruptedly exposed to anti-tumor necrosis factor alpha agents.

Mori S, Tomita Y, Horikawa T, Cho I, Sugimoto M. --- Clinical Research Center for Rheumatic Disease and Department of Rheumatology, Kumamoto Saishunsou National Hospital, 2659 Suya, Kohshi, 861-1196, Japan, moris (at) saisyunsou1.hosp.go.jp.

We report a case of spondylodiscitis caused by Staphylococcus aureus 8 months after laminectomy of the lumbar spine, occurring in a rheumatoid arthritis (RA) patient interruptedly treated with anti-tumor necrosis alpha (TNFalpha) agents. The patient had suffered from seropositive RA for 2 years. An intravenous infusion (200 mg) of infliximab, a chimeric antibody against human TNFalpha, was introduced; however, due to Pneumocystis jiroveci pneumonia, this therapy was withdrawn. Four months later, the patient underwent an L3-L4 and L4-L5 laminectomy for spinal stenosis.

Two months after surgery, we started treatment with 25 mg of etanercept, a soluble humanized TNF receptor dimer, subcutaneously twice a week. At that time, wound healing was satisfactory and no evidence of infection was obtained. Eight months after surgery, septic spondylodiscitis of the lumbar spine occurred.

To the best of our knowledge, this is the first case in the literature to show a delayed type of postoperative infection as a complication of non-instrumented orthopedic surgical procedures. Despite interruption of anti-TNFalpha therapy before surgery, patients may remain at risk of developing postoperative infections.
A recently published book addresses many of these unanswered questions – it’s called "Cure Unknown," written by Pamela Weintraub. Though it focuses on Lyme disease, it also explains:

- Why accurate blood tests for Lyme (and co-infections like mycoplasma) are unavailable;
- Why many Lyme treatment doctors have been targeted and literally run out of town (addressing Linda’s question);
- Why there are so few doctors practicing medicine that can help the hundreds of thousands of people with these kinds of chronic, degenerative infections;
- Why so many people continue to be undiagnosed and untreated.

There is so much information packed into this book, yet written in such a concise manner, you’ll start and finish all 354 pages in a week! I highly recommend it for a long list of reasons.

See the author’s site at http://www.cureunknown.com/ Also note the many links and descriptions on the bottom of that page.


Unfortunately, here is another attack on physicians and their supposed “undertreatment / mistreatment” of patients with chronic, degenerative diseases. It’s a conspiracy! All the doctors I know went into medicine to keep patients as sick as possible and string them along—after all, how would we make any money?

US Regulatory Institutions are Understaffed & Misdirected

And the article below is evidence of this unfortunate fact. However, though this is a shocking admission by the CDC, it does represent progress, albeit a few decades late. I believe the outfall from statements like this will have some rather dramatic repercussions -- at least this is my hope.


Again more opinion and doomsday talk.

Just to clarify, these mycobacterial bugs in question are intracellular. They are so small, and so sophisticated, that they literally tunnel into blood cells and live (and love!) there. Their insidious ways make them hard to detect, but also make them tougher for the immune system (and diagnostic technology) to identify. As they "live and love," they compromise the immune system, or disease tissue that tends to be less vascular (e.g., damaged tissue, cartilage, ligaments, joints).

Although mycoplasmas can be difficult to treat, a statement such as “these mycobacterial bugs in question are intracellular” is not correct. Mycoplasmas exhibit both intracellular and extracellular parasitism in humans.

As a sidenote, this spine patient community has a significant number of patients from Michigan, Minnesota and other states with a disproportionate number of tick-reported diseases. Frankly, I am very surprised that the CDC would release this report based on "strong presumptive evidence," as they have maintained a decidedly cautious position on TBDs (tick-borne diseases).

Note: If this is the first time you read this lengthy topic, please start from the beginning and carefully read the whole thing. Go to Thread Tools > Show Printable Version to print the topic.


CDC WeeklyOctober 24, 2008 / 57(42);1145-1148

Anaplasma phagocytophilum Transmitted Through Blood Transfusion --- Minnesota, 2007

Both A. phagocytophilum and E. chaffeensis can survive in refrigerated RBCs, and possible transfusion-transmission cases have been reported for anaplasmosis (Minnesota Department of Health, unpublished data, 1998) (2,3,5,6). However, because of the rarity of transfusion-associated cases, concerns regarding the specificity of available tests, (none of which are approved by the Food and Drug Administration), and the economic costs associated with implementation, the U.S. blood supply is not routinely screened for tickborne disease using laboratory methods (7).


You emphasize certain points in the paper. However, in the same sentence you fail to acknowledge the mention of the “rarity of transfusion-associated cases.” So even though it is rare, we should still screen regardless of the cost?

Because Ehrlichia and Anaplasma are associated with white blood cells, leukoreduction techniques would be expected to reduce the risk for Ehrlichia and Anaplasma transfusion-transmission through RBC components (5,8). In the absence of effective screening tools to identify donors or products infected with the organisms, physicians should weigh the benefits of using leukoreduced blood components, to potentially reduce the risk for Ehrlichia and Anaplasma transmissions.

So like in any clinical decision, physicians must factor in the risk / benefit analysis of a certain procedure/drug/intervention? What’s new? There are many risks in medicine including medications, treatment, devices, etc? There is no way to eliminate ALL the risks of a medical intervention, even if that in question is regarded as a RARE occurrence. If there was an endless supply of money in medicine, this would be more of a reality, but that is an unfair expectation of medicine in general. Yes, economic concerns come into the equation. Unfortunately, this is how modern medicine operates—the institution of modern medicine is not a perfect science and cannot remove all risk, and to believe that it has this capability, is naïve at best. Medicine is an ever-changing science and recommendation for treatment and screening are updated and improved upon all the time, as more and more data is gathered and analyzed.

The microscope...a forgotten tool makes a comeback!

Naturally, the NIH does not fund this kind of useful research. I hope this changes!

Grading of degenerative disk disease and functional impairment: imaging versus patho-anatomical findings.

Quint U, Wilke HJ.
Orthopaedic and Trauma Center, Spine Unit, St Marien-Hospital Hamm, Nassauerstr. 13-19, 59065, Hamm, Germany, ulrich.quint@marienhospital-hamm.de.

Degenerative instability affecting the functional spinal unit is discussed as a cause of symptoms. The value of imaging signs for assessing the resulting functional impairment is still unclear. To determine the relationship between slight degrees of degeneration and function, we performed a biomechanical study with 18 multisegmental (L2-S2) human lumbar cadaveric specimens. The multidirectional spinal deformation was measured during the continuous application of pure moments of flexion/extension, bilateral bending and rotation in a spine tester.

The three flexibility parameters neutral zone, range of motion and neutral zone ratio were evaluated. Different grading systems were used: (1) antero-posterior and lateral radiographs (degenerative disk disease) (2) oblique radiographs (facet joint degeneration) (3) macroscopic and (4) microscopic evaluation. The most reliable correlation was between the grading of microscopic findings and the flexibility parameters; the imaging evaluation was not as informative.


More of the same tone in the post above. By the way, microscopes are the main “tool” that Pathologists use. I’m so confused as why this article was so profound to you. Of course, the most reliable grading will be done by microscope. Path is always superior to imaging. However, path is very invasive—that’s why physicians use imaging… it’s our next best alternative in most cases without being invasive and gives us the ability to make decisions much faster. Plus, many more patients would be pissed at doctors with more invasive techniques.

Root Causes of Certain Cervical Spine Disorders

While doing some research, I found the following page was expired...but I found an archived (cached) page. There is some useful diagnostic information herein. It's also (er, was) one of the few places on the Internet where you will find a doctor admitting that Lyme disease (et al pathogens) can directly cause a cervical spine disorder! Does anyone else find it significant that a rheumatologist is admitting this?!


This Dr. did not get the memo to keep it on the “down low” about pathogens and Lyme disease resulting in spinal pathology. This guy is really going to cut into our income (because as doctors that is all we care about, right?). The patients are on to us!

Wild guess here: I’m guessing that the rheumatologist is admitting this because in early dissemination and advanced cases of Lyme disease, arthritic complaints are extremely commonly. So if you put 2 and 2 together…patient complains about arthritic symptoms, primary care doc refers to rheumatologist… thus, this guy will see many cases of Lyme disease.

I could be way off in left field though.

Last edited by Justin; 12-17-2008 at 03:17 PM.
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  #13  
Old 12-17-2008, 04:52 PM
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Justin, that was really kind of you to do all that research! I'll read it more carefully later. I did find a few things you report that are inaccurate (and yes, I can prove it), but I don't care to drag this topic out. We can catch up next week and I'll provide some definitive information.

Thanks for caring -- that's awesome!
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  #14  
Old 12-17-2008, 07:37 PM
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Holy Cow...!!

Ya know, there were some very interesting points brought up in the course of this thread, unfortunately there was also so much posted and so many "facts" contorted that you both seem to have lost the main subject matter.

Bottom line is that I think modern medical practice needs to be abundantly aware that there are many things that can cause what seems to be a common medical malady. And if your patients don't respond to the most practiced course of action a health care provider needs to be open to other avenues that are available.

Having been in health care for over 30 years and practicing in both neonatal and pediatric ICU care I think I've seen it all...

I just want to bring up one itsy bitsy point about vaccinations and then I'll leave this topic.. I have a nephew who was that one kid in 10,000 that reacts to a DPT vaccine. Unfortunately he contracted severe encephalitis and has ongoing disabilities related to a simple childhood vacination. That's not to say that I think folks should NOT vaccinate.. but I think a healthy dose of caution needs to go along with every shot that is given.

I've also cared for children that contracted pertussis and I've watched them suffer immensely or become a fatality to the disease.... so I know the vaccinations help the majority of the population.

The subject of vaccines is definately a double edged sword. Both good and bad.. as so much of medicine is..
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L 3,4,5 & S1 herniated/bulging disks-under control for now.
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Old 12-18-2008, 09:12 PM
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I've got to agree with Toebin. This is real interesting but not very helpful in terms of what this site is supposed to be offering. You both agree that 'bugs' of whatever type can lead to joint problems. Beyond that, much of the decision for each patient will be made on the spot by the patient and treating physician(s). Overloading the community with details that Justin admits are beyond the layman's reach is probably not going to help us. If the two of you wanted to go off and discuss, stress discuss in this sentence, in a series of PMs or emails then tell the whole community what you found, please do. As one potential sufferer and the husband of another, I'd be thrilled to hear more from two knowledgeable people such as yourselves.
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  #16  
Old 12-19-2008, 04:48 PM
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A little difference of opinion here, huh?
whoah, time out...

Actually, I am going to put my two cents here for whatever it is worth.

Being a critical care nurse for a while, I learned that medicine is not so cut and dry. Yes, doctors don't typically go about looking for zebras.
But there are zebras.

Without getting into too many details or violating rights, one year, not that long ago, we had three patients come in and they were in septic shock I believe. They also developed blisters on their bodies. The doctors did not know what was causing their illness.

Well, one charge nurse figured the puzzle out.

It was a zebra and this charge nurse recognized the symptoms because in her other hospital, a patient had similar symptoms. The zebra was Vibrio vulnificus.

The gentlemen were Hispanic and were alchohol (ETOH) drinkers. ETOH use, as little as 2-3 drinks a day, makes people susceptible to this disease.
They had all eaten raw oysters at the same restaurant. Not all survived, but I think two did because this zebra was identified.

As a nurse, you learn to listen to a patient. When a patient in ICU tells you they don't feel well, you better be ready. They may not feel well or they may be showing signs of a heart attack. You never know.

While I was working in my hospital, we used physician intensivists, who stayed in the unit 24 hours a day, so we (RNs) would be quizzed by some of these docs, some who didn't think we knew our stuff.

There are so many co-factors, comorbidities and everything in medicine that nothing is cut and dry. You treat for one thing and another pops up, etc..
Lab values are skewed, etc..

When you think you have seen a lot, something else occurs to blow your mind. I found out through my back research that the back is incredibly complex.

There could be a bacterial connection in a lot of back problems. Nothing can really be ruled out about things we don't know. I know that shingles comes from the Herpes zoster virus that hides out for years after someone has chickenpox.

I recently saw that the botulisum shots that people get for getting rid of wrinkles have an interesting quirk. It has been shown that the botulism bug can travel along nerve paths and move from its intended spot.

I also know there has been a lot of research about how certain bacteria form bio films. They actually change their structure and become inactive, waiting to come out in the future. This happens with Methicillin Resistant Staph Aureus (MRSA). And MRSA can also apparently hang out in the spinal area.

So both of you are right. Who knows about this or that doctor spouting this or that. The buzz word in nursing and medicine now is evidence-based medicine. The problem is that doctors nor nurses don't know everything and listening to the patient is probably the best thing they can do.

Some doctors were called quacks and then adominished for their great discovery. The doc that discovered that ulcers were primarily caused by a bacteria was degraded by his colleagues until he was proven right.

So again nothing is cut and dry. This year's quack may be the next great scientist or not.

Kimmers
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Last edited by kimmers; 12-19-2008 at 04:53 PM. Reason: spell check
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  #17  
Old 12-19-2008, 04:55 PM
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Well said and Ohhh SO True Kimmers

From one ICU person to another... it's obvious that we both have learned from listening to the patient at one time or another
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L 3,4,5 & S1 herniated/bulging disks-under control for now.
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  #18  
Old 12-19-2008, 04:55 PM
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Oh by the way.
All of these facts in your posts are very interesting to me and i think i will digest them when my children are not running around and I am not getting rid of the boxes of interesting facts i have accumulated around the house.

K
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  #19  
Old 12-19-2008, 05:00 PM
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That's for sure Toebin.
And I always listen to my body.
I spent 4-5 weeks with a supposed muscle strain and I kept asking my primary family practice doctor, "Is this just a muscle strain?"
Kept getting the answer, "Yes."
I kept asking and told him, "This is like no muscle strain I had"
Later on, he laughed when I reminded him to look for the zebras in his patients.

Take care. Trying to stay warm. It got down to frost levels last night here in sunny California.

Kimmers
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  #20  
Old 12-19-2008, 05:08 PM
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Kimmers,

Thanks for your comments. You bring up many good points. I was actually underscoring the point that medicine is not cut and dry. Also, as doctors we are trained to look for everything and anything--the horses and the zebras. I never tried to imply there aren't zebras. Doctors treat these everyday.

I agree that the best tool physicians and nurses can use is active listening skills -- I'm not questioning that. What I am questioning is inaccurate information, which is based on opinion or is anecdotal in nature, being presented as fact. In my opinion, it is unethical.

One last thing before I go, evidence-based medicine actually isn't a "buzz word" -- it is the way modern medicine is practiced, as I am sure you know.

Physicians and nurses (and other medical staff) treat patients based on the best available treatments and research. However, the world of medicine is ever-changing.

The "Quacks" I am referring to are the ones that promote ideas, drugs, or medical interventions that are not only based on dubious science, but that can also endanger the well-being of patients.

I will never forget my first day of medicine school. The first four words of our first lecture were: First do no harm.

PS annapurna ... I will reply to your post shortly. However, I want to give it the attention it deserves and I've got to run.
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