Topic: PJ LANGHOFF'S 4-22-09 2nd letter to IDSA PANEL; a must read!! :)
bettyg
Unregistered
posted
wow, pj, you've done it again! what evidence you present is outstanding!!
This is a super long, but well worth your time to read letter. After reading it, go buy her BAKER'S DOZEN or tell your family you'd like it for Mother's day, birthday, anniversary, or Christmas!
to all lyme patients receiving this, i highlighted, bolded, and underlined most of it.
pj had 4-6 areas where she underlined, and i broke it all up for neuro folks like me and you to read and comprehend.
WELL DONE MY FRIEND! Glad you are on OUR LYME SIDE!! xoxox
BettyG, iowa lyme activist
ps...i will post on lymenet.org and mdjunction.com lyme boards!!
PLEASE FORWARD TO ALL YOUR LYME FRIENDS!! BIG THANKS
From: Allegory Press <[email protected]> Subject: letter To: "Betty G" Wednesday, April 22, 2009, 5:35 PM
Betty, Salutations--Here is the latest letter I sent to the IDSA. PJ -----------------
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''.
At the time of submission, I included a letter outlining the chapters which I felt were most relevant for your review if there was insufficient time to read the entire book, (which I highly recommend).
I would like also to submit the following additional information regarding the transmission of Borrelia burgdorferi through the blood, with particular reference to an article published back in 1989, which I noticed in a Transfusion back issue that I had purchased.
Within the article are key points that the authors make regarding transmission, including that transplacental infection of the fetus has been demonstrated (Steere ref. below);
the fact that Bb is transmissible through blood products and that it survives the blood storage process.
Since blood products are not routinely screened for the presence of many tick-borne infections including Bb, it is imperative that the IDSA guidelines make mention of this information; however ``remote'' some authors have claimed this kind of transmission may be.
The conclusion of the 1989 article was that ``On the basis of this study, the possibility of transmission of Lyme disease through blood transfusions has not been excluded.''
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, made aware of this significance 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 was public knowledge, and blood products 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 not probable and that blood products should be screened.
I personally feel that these organizations and scientists have a duty to report any possible infectious transmissions to the public; and I believe that they are falling far short of this responsibility for reasons which may prove to be profit-, and not patient-safety oriented.
If there are agencies who do ask donors about tick history or who won't accept donations except beyond 30, 60 or 90 days, that is at least some effort, but unfortunately, I believe ineffective and insincere.
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 the transmission facts and evidence within my book The Baker's Dozen.
Of note is that mosquitoes and biting flies and other insects have Bb within their midgets and salivary glands.
I point out these studies and evidence in my book.
There is also an anecdotal case study with photographic evidence of mosquito transmission within my book as well.
Again, none of this important transmission information has been mentioned in the IDSA guidelines for Lyme disease, and absolutely should be.
Enclosed are 10 copies of the article by Badon, Fister, and Cable on Bb 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.
I must therefore conclude that perhaps it is a topic the IDSA simply wishes to ignore; much to the misfortune of millions.
Even guidelines author Dr. Gary Wormser's team at NY Medical College placed Bb-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 Bb 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.
CDC and FDA will continue to actively monitor the situation.
In addition, both agencies are renewing their warning that the months of April through June, 1997 should not donate blood within four weeks of their departure.
Earlier this month certain blood products collected at Fort Chaffee were recalled from six states as a precautionary measure because donors of these products may have been exposed to tick-borne pathogens.
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.
The likelihood that an individual who has received a transfusion recently in the United States that was obtained from one of these National Guardsmen is extremely low.
CDC does not have any reports of illness among persons who received blood components from National Guardsmen that could likely be attributable to a tick-borne illness.''
I would call these important statements, which help prove that concerns over blood-borne transmission of Bb has 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
We recently had ``an incident'' of Jakob-Creutzfeldt disease ``exposure'' in a WI 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.''
These are the current IDSA recommendations and CDC surveillance guidelines; both of which are not intended to supplant physician judgment or be used to diagnose patients.
The article also states that serum of blood donors is not routinely screened for antibodies to tick-borne infections, including Bb, 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 CT of acquiring Lyme disease from a blood transfusion is ``low'', and essentially because CT 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 Bb 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 or else through an excessive overreliance upon caution, and was not accidental in nature.
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.
It is wholly responsible for the terroristic tactics employed by those wishing to ``take out'' our Lyme-treating physicians--many who have saved thousands of lives by thinking outside the IDSA ``box''.
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).
Continuing current trends can only serve to further harm reputations and scientific processes.
The people will not remain quiet when they are suffering and dying from what they know to be Lyme disease--whether the scientific community or the government are willing to admit its existence or not.
If taxpayers are forced into long-term submission to illness due to profit potentials and pipeline promotions, I predict that the health care 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 (Euro or other currency).
My references are incorporated here as page 6.
Sincerely,
(Ms) PJ Langhoff (address) (phone)
Award-winning author, activist, Lyme patient, mother of Lyme patients, medical researcher and Lyme support leader in the Midwest.
(attachments)
(I will provide references to anyone who wishes to see them, contact me at [email protected] with request)
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Way to go PJ!!!
We are right behind you....
I'm down to eating peanut butter and pickle sandwiches. I'm not quitting till I get these papers done!
I am not going out for food or anything else.
Nice to see you did all this work. It is tough.. for sure! MUCH appreciated!
posted
tincup, i was hoping you'd stop by; aren't you glad we have her on OUR LYME SIDE?!! LOL
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Bravo! Another great letter from the wonderful writer and activist!
It is truly frightening that so many of the points she cited were from the 1990's and here we are all these years later and the 1990's problems are STILL our problems.
It seems to me that here in 2009, we should be able to look back to the 1990's and say, "thank goodness we overcame that epidemic".
Thank heavens PJ Langhoff is a good, strong, compassionate voice.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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bettyg
Unregistered
posted
lee, perfectly said....almost 20 years later and NO PROGRESS AT ALL! how sad for us; disgusting.
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