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Lyme in the blood supply?
NEWS ARTICLE from the Chronicle Telegram, 8-4-05, by Cindy Leise
``Feds start MS [Multiple Sclerosis] study; County cases 32 percent higher; Wellington worse
Health officials will embark on a study to determine whether genetics, pollutants in the environment, viruses or other factors are behind the elevated number of multiple sclerosis cases in Wellington and the rest of the county.
Blood will be drawn from 500 people with MS living in Lorain County, and also in a 19-county area surrounding Lubbock, Texas, and Independence and Sugar Creek, Mo. Health officials will study those people and compare the results to similar data from 1,000 people who do not have MS.
The 1,500-person study is the first of its type and its results could help target causes or even help lead to a cure, said Robert Indian of the Ohio Department of Health. The issue of whether something in Wellington is triggering the disease "is the elephant in the living room," he said. "It's the ultimate question," Indian said. "We wouldn't want to see a community stigmatized but this gives us a very good opportunity of finding something out."
At the same time they announced the new study, officials said they have prepared a draft report that indicates Lorain County has rates 32 percent higher than the national average, and that the number of cases in Wellington is three times the county rate ...''
When To Suspect Lyme Disease
by John D. Bleiweiss, M.D., April, 1994
``... Many patients are told that they have Multiple Sclerosis (MS) because of brain MRI findings or a spinal tap was positive for oligoclonal bands (OCB) or myelin basic protein (MBP). The medical literature is quite emphatic that MRI does not reliably distinguish between MS and Lyme Disease because there is too much overlap in their supposedly distinct appearance and location of plaques.
Plaques have been detected with both disorders in the brain and spinal cord. OCB's and MBP are non-specific markers for demyelination (loss of sheath around nerves) and do not signify a cause of the demyelination. In Miklossy's study above, senile plaques stained avidly for Borrelia burgdorferi spirochetes.
Vincent Marshall reviewed the MD literature in Medical Hypothesis (Vol 25: 89-92, 1988) and advances the notion that Lyme Disease is causing MS! His survey revealed that multiple studies prior to 1951 were able to demonstrate spirochetes in the spinal fluid of MS patients (by inoculation into animals and on silver stain of Central Nervous System tissues).
Dr. Coyle has documented the presence of antibodies to Borrelia burgdorferi in MS patients (Neurology Vol. 39:760-763, 1989). The encephalopathy attributed to MS is very reminiscent of Lyme Disease. Both MS and Lyme Disease are associated with sinusitis (Lancet, 1986).
Dr. Leigner has reported a case of Lyme Disease which fulfilled all criteria for MS. The epidemiology of MS and the geographic distribution parallels that of Lyme Disease. The symptoms of both Lyme Disease and MS can be aggravated if the patient takes a hot bath. Anecdotally, patients with Lyme Disease, who previously had been identified as MS, responded to antibiotic therapy.
Lyme Disease has been documented to cause strokes, paralysis, a variety of seizures, transient or permanent blindness, Parkinsonian-like movement disorders, motor and/or sensory neuropathies, mononeuritis multiplex, radiculoneuritic pains, meningitis and encephalitis. It has been affiliated with Lou Gehrig's disease and the Guillain-Barre Syndrome ...''
MEWS ARTICLE from The Herald Press [Bristol, CT], 8-20-05, By CHRISTINE PALUF
``Misdiagnosis causes months of confusion for Lyme sufferer
BRISTOL -- Melissa St. James has spent her fair share of time at hospitals lately, and its not only because she works in one.
Since April , she, her husband and her children have all been diagnosed with Lyme disease. What made matters worse was that St. James was originally diagnosed in November of last year  as having Multiple Sclerosis, a far more debilitating, expensive and serious condition -- especially for someone without insurance coverage.
"My doctor told me, You have MS, and the injections are $1,500 a month," St. James said. "Let me know how you'll do that.
"I just started crying," St. James said. "Ive worked in nursing hom es. Ive seen 40-year-olds with MS." "I asked him if it could be Lyme disease. He said, Absolutely not ..."
St. James sought a second opinion. That doctor listened to her inquiries about whether she could have Lyme disease. He too, however, discounted her information and reaffirmed her original diagnosis ...
After taking injections for three and a half months, not only was St. James not improving, her symptoms were getting worse. After seeing a neurologist in January, she was told that that the exacerbations, sudden worsening of MS symptoms, that rendered her unable to walk, usually only occurred about two times a year in most MS cases. St. James was having the attacks every six weeks.
The muscle and joint pain was compounded by chronic fatigue. Daily tasks such as cooking and cleaning became nearly impossible ...
Confusion was another aspect of the disease that St. James believes contributed to a car accident she had in January. "There's this brain fog, you're not as sharp. I was having speech difficulty -- my words would get confused. I'd want to say picnic table and I'd say play pen. The way my husband and kids would look at me ... I just couldn't live like that anymore. One day I just decided I was stopping the injections," St . James said. "They werent helping me ..."
St. James weened herself off of pain medication and anti-spasmatic medication as well. "I was really scared, I had that wheelchair in the back of my mind," St. James said.
After discontinuing the shots, St. James found a "Lyme-literate" doctor, recommended to her by a friend who had a similar misdiagnosis. This doctor listened to her input and finally tested her for Lyme disease. He then started her on antibiotics, commonly prescribed for a few weeks to treat the disease. However, when symptoms persist, they can be used for longer periods of time.
"Within two and a half months I had 90 percent resolution of symptoms," St. James said. "My attitude changed immediately."
"There was no more limping, no numb leg dragging along. The pins and needles from my hips to my feet were so bad I used to get sick to my stomach ... I haven't had that feeling in so long," she said, smiling. "It was a complete turn-around."
Lyme disease can be very difficult to detect ... When the test results come back negative, the common tendency is to rule Lyme out completely and look for another cause. However, the longer the disease is misdiagnosed or not found, the harder it is to reverse it.
Symptoms of Lyme disease can also easily be attributed to other diseases. And the initial flu-like stage with fatigue, headache, muscle aches and fever, or the nausea, vomiting, diarrhea, dizziness and vision changes are common to many other ailments.
For someone without insurance, it can be even more of a challenge to find the cause of the pain and discomfort that Lyme disease can cause.
A St. James friend of 15 years was diagnosed as having MS at the beginning of their friendship, and has spent the past 10 years in a wheelchair. Upon St. James suggestion, she was examined and tested for Lyme disease. The tests came back positive.
"Ive never seen someone so happy to have Lyme disease," St. James said. "But they did four tests on my girlfriend (who had insurance) and they only did one on me."
St. James current doctor treats her the best he can with the resources that are available to him. "My doctor told me he could treat me so much better with insurance," St. James said.
"Lyme is the easiest and cheapest solution," St. James said. "But these autoimmune diseases are big money makers ... No one said that for $35 a month in antibiotics instead of $1,500 in daily injections, I'd be getting better."
Since her diagnosis was corrected, St. James has few lingering medical issues. Unfortunately, the bills related to her misdiagnosis are one of them.
"I owe UConn thousands of dollars when I got no help. The (neurologist) put me on Prednisone, which is the worst thing for a bacterial infection because it suppresses the immune system. I got worse; so I weened myself off it," St. James said. "There was no follow-up from my doctor. But I do get his bills."
Yet her resolve is unchanged. St. James serves as a contact person for the Greater Hartford Lyme Disease Support & Action Group, www.ctlymedisease.org
"This is important for people to know. At least I have the medical knowledge and the resources to know which direction to go in. What about people who don't?" St. James said. "It upsets me that they're just left hanging. I want to equip the patient with the knowledge, because the doctors aren't doing it."
[Lyme in the blood supply?]
P. J. Langhoff wrote on 4-25-09:
``Here is a copy of the text from my 2nd submission to the IDSA Guidelines Review Panel.
My first included 10 copies of my newest book "The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm?" Available at www.Amazon.com ...
April 22, 2009
Dear Esteemed Guidelines Review Panelists,
Recently I sent each of you, (and it was acknowledged as received by an IDSA representative), through the guidelines public input submission process, a copy of my new, 528-page, 1,060 reference containing book: "The Baker's Dozen & the Lunatic Fringe: Has Junk Science Shifted the Lyme Disease Paradigm" ...
I would like also to submit the following additional information regarding the transmission of Borrelia burgdorferi [the Lyme Disease spirochete] through the blood ...
Borrelia burgdorferi is transmissible through blood products, and ... it survives the blood storage process. Since blood products are not routinely screened for the presence of many tick-borne infections including Borrelia burgdorferi, it is imperative that the IDSA guidelines make mention of this information ...
I feel this information should not only be made available within the IDSA guidelines, but published openly, with the CDC, American Red Cross and other blood organizations world-wide ... so that blood products can begin to be screened for Lyme and other tick-borne diseases.
The tragedy of this kind of transmission is wholly unnecessary. For example, my husband who has Lyme disease, unknowingly donated many times over the years with good intentions, and was NEVER asked even once if he had Lyme disease, and we live in an endemic area. Once he discovered he was infected, he stopped donating blood.
I will not donate blood as I have been infected since I was young, even though I have been treated with oral, Intramuscular and Intravenous antibiotics over decades, many symptoms remain, which do respond to antibiotic and other "alternative" treatments.
I understand the temptation for organizations to hesitate to publicize this information for fear that other people would cease donations, but you must take into consideration that millions of people's health world-wide is possibly being jeopardized by a lack of proper information.
If this were public knowledge, and blood products [were] screened properly, the risks would be ameliorated or eliminated, along with the fears. That this transmission information is probably well known by some of the IDSA authors and possibly even the Red Cross, cannot be stated for certain, but my suspicions are that there is at least a basic understanding that this kind of transmission is possible ... If there are agencies who do ask donors about [their] tick history ... that is at least some effort ...
Tick-borne illnesses such as Lyme disease are serious infections that do kill. I have lost many friends and fellow advocates to Lyme disease; and yes, it is on their death certificates. Even Dr. Alan Barbour years ago expressed concerns about Borrelia spirochetes possibly being transmitted through blood donations, I outline his statements within my book The Baker's Dozen. I'll reiterate here: "If they are concerned about passing syphilis in blood transfusions, then why aren't they concerned about Lyme disease?"
Transmission is a key point inasmuch as millions of people world-wide are affected by blood, blood and tissue products and other human biologicals that indeed have the tremendous potential to transmit these important infections. I have an anecdotal case history of a woman who donated a kidney to her sister. The donor had been treated for Lyme disease.
The recipient had no known history of Lyme disease. Both were sisters who lived in different countries, one in the US, the other in Germany. The end result was the recipient succumbed to Lyme disease which, due to her immunosuppressive drugs to ward off tissue rejection, took hold of her within a short time period following transplant surgery, and she died of Lyme infection.
And yet I have seen nothing that would indicate any concerns by the IDSA within the guidelines that outlines the potential for these types of transmission. Indeed, very little transmission information is available and exhibited within the guidelines, irrespective of the body of scientific literature that proves that many of these types of transmission can occur, and certainly through more means than just a tick bite.
I also outline [other] transmission facts and evidence within my book The Baker's Dozen. Of note is that mosquitoes and biting flies and other insects have Borrelia burgdorferi within their midgets and salivary glands. This has been studied and known for decades and yet this information has not made it into the realm of public health information ...
Enclosed are 10 copies of the article by Badon, Fister, and Cable on Borrelia burgdorferi transmission through the blood. I must point out that these parties have gone on to publish information along with at least one of the IDSA guidelines authors (Krause) and his associate (Shapiro). So it is hard to imagine why the guidelines do not address these very important transmission issues ...
Even guidelines author Dr. Gary Wormser's team at NY Medical College placed Borrelia burgdorferi-infected blood into a refrigerator under conditions which were similar to those used to typically store donated blood. After 6 weeks, researchers were able to culture Borrelia burgdorferi from the refrigerated blood samples. And French researchers at the Pasteur Institute in Paris were able to report similar findings.
As I point out in my book The Baker's Dozen, the CDC expressed serious concerns to military personnel who from April to June, 1997, were warned not to donate blood within four weeks of their departure from Fort Chaffee, Arkansas. The words from the press release were as follows:
"As a precautionary measure, The Food and Drug Administration (FDA) and the U.S. Centers for Disease Control and Prevention (CDC) are advising that individuals who underwent training at the Fort Chaffee, Arkansas military base during the months of April through June 1997 and have subsequently donated blood or plasma within four weeks after leaving the base should immediately notify the blood or plasma establishment where the donation occurred. These establishments need to be informed that these National Guardsmen may have been exposed to tick-borne pathogens which could possibly be transmitted through blood transfusion ..."
"To date, CDC has serologically confirmed Rocky Mountain spotted fever in one ill guardsman, and has preliminary results of additional infections by spotted fever rickettsia and Ehrlichia in guardsmen who returned from Fort Chaffee. Subsequent evaluation of this incident by CDC and FDA has revealed that on at least four occasions individuals who might have been exposed to these tick diseases during training at Fort Chaffee donated blood at other establishments ..." illness."
These important statements ... help prove that concerns over blood-borne transmission of Borrelia burgdorferi have been known and discussed at least for the past dozen years.
In 1993, New South Wales Red Cross Blood Transfusion Service, (Sydney, Australia) published an article stating that a number of "exotic" diseases may be transmitted by transfusion of blood or blood components, including but not limited to HIV, hepatitis (A,B,C,D,E), syphilis, malaria, retrovirus HLTV-1, cytomegalovirus, Chagas' disease (Trypanosomiasis cruzi), Lyme disease (Borrelia burgdorferi), and Jakob-Creutzfeldt disease (mad cow).
We recently had "an incident" of Jakob-Creutzfeldt disease "exposure" in a Wisconsin hospital just an hour from my home. The hospital was closed down for an entire day while instruments were sterilized. About 20 surgical patients were considered to have had the possibility of exposure. That is through tissue contamination. If it was not a concern, this never would have happened. And yet Lyme disease is ignored in this state, a state long known to be highly endemic for Lyme disease.
Dr. Paul Duray of Yale University performed military base studies of ticks and tick-borne infections in the 1990s. I outline those findings in my book The Baker's Dozen.
Another important statement in the abstract of the aforementioned Australian article is: "Screening procedures currently used in Australian blood banks minimize transfusion-transmitted infection." Although the article stated that the risk "may be less than 0.1%", it is still an unacceptable risk, because the publication was based on a limited study in a limited geographical area.
Indeed, we read from a 1994 article (received for publication 12/93) written by Drs. Michael A. Gerber, Eugene D. Shapiro, (IDSA guidelines coauthor) Peter J. Krause, Ritchard G. Cable, Stanley J. Badon and Raymond W. Ryan, the risk of contracting Lyme disease or babesiosis, according to the article "from a blood transfusion in Connecticut is very low." However what this article also indicated was that there were no documented reports of acquisition of Lyme disease by blood donation.
Many patients are unaware they have Lyme disease, physicians deny patients a right to testing, or misinterpret tests which are insensitive at best, in particular before patients can make antibodies, which is a condition many IDSA authors have acknowledged exists.
Large numbers of cases of Lyme disease remain undiagnosed and thus, are undocumented. Patients are often provided with inaccurate diagnoses while their Lyme infections continue unchecked because they falsely believe their physician's diagnosis to be "accurate".
I was wrongly told for more than a dozen years that my family could not possibly be suffering from Lyme disease. If I had believed those misdiagnoses, I would not be writing this letter right now, I would literally be dead. That is because IV antibiotics for Lyme disease, and a doctor willing to step outside the IDSA perceived standards of care, which are merely suggestions and not mandate, saved my life. The physician treated me at great risk to his medical license, because he treated his patients beyond the recommended "21 to 30 days of doxyclycline." ...
The article also states that serum of blood donors is not routinely screened for antibodies to tick-borne infections, including Borrelia burgdorferi, or B. microti. Conclusions about possible transmission and time of contracting the illness were restricted to calendar dates, which is simply not applicable in the real world.
In addition, patient questionnaires are unreliable sources of data as many patients are unfamiliar with signs and symptoms of Lyme, are unaware of tick bite or other transmission routes, and would not necessarily have antibodies to the illness if they indeed harbor Lyme (or other) infections.
The article discusses the two-tiered system (ELISA and Western Blot) to test serological samples. These tests are by admission from their own manufacturers, not sensitive or specific enough to be used across the board on all patients, and certainly not within the initial month(s) of Lyme infection. And so the study conclusions are misleading on the basis of faulty data, faulty assumptions, and faulty conclusions without proper long-term follow-up of patient illness histories.
Additional wrong assumptions occur as in this article which states that because the risk in Connecticut of acquiring Lyme disease from a blood transfusion is "low", and essentially because Connecticut has the highest incidence of Lyme disease, and a large proportion of Babesiosis cases reported in the US, that supposedly the risk in "other areas of the country would be considerably lower." There simply is no data to support this supposedly scientific conclusion. Repeatedly the IDSA guidelines make assumptions without scientific data to back them up.
This happens again and again within the IDSA literature, patients are not screened properly for studies, patients with limited aspects of Lyme infection are utilized in favor of others; patients with tick-borne illness are assumed uninfected after short-course therapies, and no long-term follow-up is provided beyond a short time span.
Lyme disease is known to persist through cysts, L-forms, biofilms, and other sequestering methods within the body, and some of the IDSA authors have published this information, which I outline again, in my book The Baker's Dozen.
That they have unilaterally ignored a large body of evidence showing Borrelia burgdorferi persistence in the guidelines and in other sources, is a huge part of the current controversy.
That they might continue to push their short-course treatment therapies as "curative" instead of recommending that patients be treated is unquestionably irresponsible. Is the reason their interests are more in favor of keeping the patient pool active so that when a "viable" Lyme vaccine is created, that a ready-made consumer audience will be available?
It certainly appears that way from the text of the guidelines. Since much information exists within peer-reviewed literature, much of which is cited within my book; but which was largely ignored within the IDSA guidelines, it can only be assumed this was done by deliberate intent ...
In conclusion, I urge the panelists to consider carefully the content of the IDSA guidelines and understand that the manner in which they publish data, make conclusions, and leave out important information to the public, is harmful, misleading, and causing thousands of patients to have their diseases ignored, misdiagnosed and left untreated ...
Many well-meaning physicians look to guidelines such as these to assist them in clinical practice of their patients, and they are sadly provided with false and/or misleading information. I urge you to declare the current IDSA guidelines for Lyme disease not only faulty, but completely unusable in their present state. You have the power to change the processes which are holding patients and physicians back from a basic human right for health and vitality.
If you let the guidelines go as they are currently written, my fear is that you will not only be adding to the tremendous controversy that exists currently; but you will also be personally held responsible by the public for allowing the current trend of discrimination against ill citizens to continue unchecked. There is a current trend also for massive distrust of the scientific community, (which is already in play thanks to the IDSA guidelines and the dismissal of Lyme disease) ...
If taxpayers are forced into long-term submission to illness due to profit potentials and pipeline promotions, I predict that the healthcare system as well as the scientific research-for-profit paradigm will finally collapse under the strain of growing hostility and the people's perceptions that the academic world cares less about human suffering than it does the almighty dollar ...
Sincerely, (Ms) P. J. Langhoff''