Tuesday, March 22, 2011

27 What happened? The Early Days of Lyme Disease

This could end up being part of a series on the history of Lyme disease, but for now I wanted to share something from Polly Murray's book, The Widening Circle.

I really can't recommend this book enough for readers who are either Lyme patients or care about someone who is a patient - it is a well-written account of one woman's journey of struggling with strange symptoms that were plaguing her and her family for years. Her determination to find the cause, and how her actions led to the discovery of Borrelia burgdorferi in ticks led to all that people in the Lyme disease patient community are familiar with now.

Gandhi once said, "Be the change you wish to see in this world," and I think Ms. Murray's life reflects that statement.

Moving on to the question of "What happened?" in regards to how the introduction of Lyme disease back then led to the state of affairs over Lyme disease now (which is something people ask whenever they read the 1993 Senate testimony I recently posted): It's not that easily answered.

A combination of physicians who weren't sure how to treat Lyme disease not long after the disease had been discovered, physicians who came down ill themselves and self-treated for longer if their symptoms relapsed, the media's role in educating the public about Lyme disease leading to fearful patients, politicians in Connecticut who were slow to respond to patient demands for improvements in diagnosing and reporting the disease - all of these contributed to the atmosphere around Lyme disease.

The slow response of politicians and doctors to increasing numbers of patients suffering from Lyme disease led to the creation and growth of Lyme disease patient support groups. Even back then, by 1992 there were over 100 patient support groups for Lyme disease.

I quote an excerpt from Polly Murray's The Widening Circle, pages 266-267:
"Some doctors I have encountered think that Lyme disease is easily treated by a single course of antibiotics in its early stages; if patients fail to overcome the infection after one treatment, their future complaints are considered to be not associated with Lyme disease. These doctors believe that once a patient is treated, he or she no longer has Lyme disease.

In 1987-1988, tremendous media attention was given to the disease; I think this was generally beneficial. Correct information must prevail over ignorance. However, when the public saw the grave outcomes suffered by the patients who appeared on TV, many were scared that if they were bitten by a tick, they would have devastating illness. While a number of people do not respond to treatment or have not had treatment and have had severe complications, a proportionately far greater number are treated and seem to do well. (It is true, however, that some may relapse or enter another stage of the disease, sometimes many years later.)

Some doctors during this period of media attention were inundated by people worried that they might have the disease; they called this anxiety Lyme hysteria and Lyme paranoia. Some patients, as I have mentioned, were told they were "antibiotic junkies". There seemed to be many extremes in attitude, some physicians being unwilling to diagnose Lyme disease even with a classic presentation, and others willing to treat anyone with any vague symptom for Lyme disease. The unreliability of Lyme tests, as we shall see, did not help matters."
So, during this time, according to Polly Murray's account, people who were incredibly sick with Lyme disease were in the media spotlight and it led to fear in many people. The fear was not entirely unfounded - people do suffer greatly from Lyme disease. But if caught early, a significant number of patients go on to do well.

Why this is remains a complicated answer, and something that this blog investigates over time - it won't be limited to a paragraph or two of text.

At any rate, some people were afraid they had Lyme disease, and rather than be compassionate, some of these doctors were making negative statements about such patients. How many, I don't know - Ms. Murray doesn't elaborate on numbers.

It definitely does seem as if there was a greater mix of opinions in the medical profession about how to diagnose and treat Lyme disease. It was less monolithic, and the push from a handful of select professional medical organizations to set the standard of care for all primary care physicians wasn't in place yet.

Ms. Murray continued:

"A number of physicians continued to say that media hype was distorting the true profile of Lyme disease and was scaring people unnecessarily. True, the adverse outcomes were proportionately rare; however, to the rare patient with a devastating outcome, statistics are irrelevant. The fact remains that the more proper information citizens and physicians are armed with, the more likely they will be to protect themselves from Lyme infection and to detect and treat Lyme disease early so that devastating outcomes will be less likely.

As the number of cases continued to rise, some physicians in endemic areas began to see great numbers of patients with Lyme disease. With their growing experience, many of these physicians became convinced that suggested treatment regimens were insufficient to combat the disease in some cases and were calling for longer and more aggressive treatment. They began to encounter patients who clinically seemed to have Lyme yet tested negative, while a number of patients continued to have persistent symptoms and remained chronically ill for years despite treatment. This area of chronic complications is the most controversial and the most disheartening part of the Lyme disease story."

So as the number of cases went up, so did the number of patients who had seronegative Lyme disease and those who seemed to have a condition resistant to treatment.

To get a complete picture of how a disease is going to interact with a population, one can extrapolate what percentage will be infected from a smaller sample size - but it's harder when the presentation is not consistent across the board. Harder when a disease can be seronegative. Harder when it's suspected a disease can be asymptomatic and latent, only to present in its third, most serious stage later.

Part of what fueled the controversy back then was research in 1989 by V. Preac-Mursic and also doctors who were infected with Lyme disease who self-treated themselves longer than what Yale's suggested guidelines were at the time (that 2-4 week treatment length everyone in Lyme world is familiar with).

Ms. Murray wrote,

"Evidence has been found for the persistence of the spirochete in various parts of the body, despite antibiotic treatment and negative tests. A 1990 paper by V. Preac-Mursic and colleagues reported studies of patients who had originally been seropostiive, had been treated with antibiotics, and then had become seronegative. However, spirochetes could be cultured from skin specimens and spinal fluid from these patients, showing a persistence of the infection. In her summary, Dr. Preac-Mursic said, 'We conclude that early stage of the disease as well as chronic Lyme disease with persistence of B. burgdorferi after antibiotic therapy cannot be excluded when the serum is negative for antibodies against B. burgdorferi from CSF [cerebrospinal fluid] and skin biopsy in our patients after antibiotic therapy with normal CSF-values and negative serological tests for B. burgdorferi raises important considerations in the treatment of Lyme borreliosis.' Indeed, this study raises important questions as to both the adequacy of antibiotics in treating the disease and the reliability of the tests in detecting the disease."

The above mentioned study, for the curious, is this one:
PREAC-MURSIC V, WEBER K, PFISTER HW et al.: Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme borreliosis. Infection (1989) 17:355-359.

To see the abstract for this paper (about halfway down the page) and papers with similar focus, I recommend this collection of links found at Lymenet Germany:
http://www.lymenet.de/literatur/niches.htm

There's a lot of science information on the Lymenet Germany web site - much of it in English - so I recommend checking it out some time.

Anyway, knowing this and other research about persistence only fueled the controversy at this time.

By the time 1992 rolled around, and the Fifth International Conference on Lyme Disease was held, the controversy was present at the conference itself.

As Murray reported:

"A number of papers submitted by physicians in endemic areas had been rejected by the conference's program committee. After protests from support groups and patients concerned that important new information on the disease was being excluded, the committee reversed its decision."

Does this sound familiar at all to any of you reading right now? Like maybe how things went down with the October 2010 Institute of Medicine workshop on tickborne illness?

She continued:

"It was my feelings that the patients who attended the conference primarily wanted better research and information on treatment evaluation and the development of more effective therapies and techniques of prevention. They were obviously interested in a cure. Many had found that the prescribed four-week treatment with antibiotics was not sufficient, and that they relapsed if not treated for long enough period of time. They questioned commonly accepted paradigms of the illness and believed that important questions were not being investigated."

And later on,

"After the conference a number of patient representatives wrote to its heads, citing six papers presented at the meeting which endorsed the theory that the spirochete persisted even after treatment and that a patient could be seronegative and yet have Lyme disease. They 'asked for more research on pathogenesis, long-term antibiotics and innovative drug delivery systems' and 'offered their services as participants in an NIH-sponsored effort to find a cure for chronic Lyme disease.'

Those patients sound just like me! That's what I'm asking for, too - more research on pathogenesis, long-term antibiotics, and innovative drug delivery systems.

Whoa.

So, as you can see, the issue of Lyme disease and its treatment being controversial has been with us for many years. The problems and concerns which patients faced twenty years ago are, sadly, the same problems and concerns they face today.

Where do we go next? What can patients do to change this state of affairs without reinventing the wheel?

A lot of awareness has been raised about Lyme disease in recent years - the publishing of Cure Unknown, the making and distribution of the film, Under Our Skin; the increasing online presence of large scale Lyme disease patient social networking sites, and numerous campaigns, fundraising drives, and events have been held to get more attention for Lyme disease.

How much this helps towards getting the research that is so badly needed remains to be seen. The funding and development of the Columbia University Lyme and Tickborne Diseases Research Center is definitely one of the bright spots in the Lyme patient community, but more such spots are needed and were needed years ago.

27 comments:

  1. Thanks for this important article, Camp Other. Very well said and good research.

    A) I think based on observation that many (not all, of course) doctors go by the book and by formulas. They may or may not have an open mind because of this model in practicing.

    I suggest that responsible medicine needs to keep an open mind, and to think beyond textbook formulas. Just because a patient does not fit a particular textbook formula, does not mean they don't have a legitimate issue.

    Of course, there are many very caring doctors out there who definitely think outside of the textbook and its box.

    Alas, those are the ones who are taking the risk in what I am increasingly perceiving to be a sort of over-regulated healthcare quasi-dictatorship, governed by Federal entities, as pressured by pharmaceutical and insurance companies.

    No doctor should be in fear of following his/her conscience in practicing responsible medicine, and no patient should have to suffer at the hands of bureaucratic over-regulation.

    Sometimes people assume that the government and its regulations protect us. I assert that individual conscience based on freedom, will protect us much more than government over-regulation.

    Special monied interests may have a lot to do with the controversy, and this is what needs to be tackled, as a root cause.

    B) I suspect it may not be controversy alone that is at work here, even if it is a reality that it is also part of it. I think doctors, pharmaceutical companies and others are very aware of the reality of antibiotic-resistant bacterial strains, and certainly not limited to lyme therapy.

    Therefore, to say that lyme is not going to respond (in some cases, not even in all of them) to ongoing therapy is merely a cop-out, in my book. And quite frankly, an all too convenient way to avoid paying for treatment, where insurance companies are concerned. This is a criminal act, if you ask me and needs to be addressed as such.

    Chiquita Incognita

    Continuing in the next comment

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  2. C) "It's just in your head" is one more outcome from practicing by the book. An example why it is important for doctors to listen compassionately, as you say very well Camp Other, and why it is irresponsible medicine to practice out of the textbook alone.

    D) Buhner writes in his book Healing Lyme that knotweed will make circulation available to the eyes, joints, heart and skin. I am assuming (as ginkgo does, for example) that this is because it is dilating the capillaries to those areas. This, in turn, makes the drugs more readily available to those areas that are otherwise difficult for antibiotics to reach, writes Buhner.

    This could help with some of the antibiotic- resistant cases.

    He also names the exact killer cells which are reduced in people whose cases do not respond to antibiotic therapy, and which anti-lyme herbs will help the body to make more of those killer cells (and other immune cells, interferon, cytokines, etc). So that the body can take care of the bugs to which there is otherwise resistance.

    That's where plants can compliment antibiotic therapy and help to make it more effective in resistant cases, writes Buhner.

    Buhner quotes scientific studies and clinical practice alike in his book, while also being very specific about which *exact* immune cells and body functions are benefiting by each plant (while naming possible side effects as cautions, too).

    E) I suggest that in addition to thinking about antibiotic therapy (which may be necessary for many people, though I myself have done incredibly well with just herbs alone fyi), we also think about how to strengthen, build and *balance* (modulate) immunity.

    That's where naturopathics come in. Mainstream medicine's model is to kill this, take away that. But it doesn't have tools to help strengthen and cleanse the body, which naturopathics does have an arsenal of.

    When the body's own defenses are built up and properly balanced, the bugs will be naturally tackled by the body's own defenses. Resistance to antibiotics will possibly (at times) decrease in the process (in those cases when therapy can go more quickly due to complimentary support), as I am gathering from reading the details in Buhner's book.

    Buhner has also written a book about herbal antibiotics and which herbs to use in those bacteria which are resistant due to antibiotic therapies (in lyme and other cases). The book for those interested is called Herbal Antibiotics: Natural Alternatives for Treating Drug-Resistant Bacteria (Storey Medicinal Herb Guide) - Paperback (Jan. 8, 1999) by Stephen Harrod Buhner

    CI (continued below)

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  3. E) I don't think the problem of antibiotic resistance is going to go away. Here is why:

    I learned from an authority during herbalism training that the mainstream antibiotics scramble the DNA of the bacteria, and that this is why they mutate and become more virulent.

    Herbs don't scramble the DNA of the bacterium. Instead, they increase the body's own defenses and this in turn fights off the bugs. Without causing a mutation of the species and hence, no increased virulence or treatment resistance.

    The mechanisms by which this happens varies with each plant. Buhner's book describes it in detail, noting which exact immune cells are raised by each plant. He also notes when to raise those cells is contra-indicated, to guide those with an over-active or under-active immune system, each alike.

    Buhner agrees that antibiotics are necessary, "even in my book" he says.

    Perhaps the solution to the antibiotic resistance problem is to use naturopathics (which includes more than just herbs) first, then to use antibiotics as a backup.

    Food for thought. And only an idea, because I will assert very clearly that everybody responds differently to different treatments.

    I am a person whose body is too reactive to take mainstream antibiotics. I respond very well to the herbs. Others may require the heroic blast of mainstream medicine to feel any results. We are all different, depending on our own constitutional type.

    It's a hand and glove operation, not an either-or, which I am advocating here, based on individual needs.

    I am not a doctor, and I qualify this as an educated *layperson's* *opinion*.

    Thank you all, Chiquita Incognita

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  4. Hey Chiquita,

    I don't have much time to respond to all of your statements here today - just acknowledging that I've just finished reading them. Perhaps other readers will have something to say in a detailed response sooner than I can.

    You've written a lot to read and consider. Thanks for sharing your thoughts and opinions on the doctor-patient relationship, herbal therapy, and antibiotic resistance.

    These are issues which concern all of us - including people who are not struggling with Lyme disease and other tickborne infections. I definitely see the need for more dialog on them.

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  5. Thanks Camp Other!
    Fyi this got to be much longer than I intended, so thank you for reading it and I look forward to reading the comments to *your* material!

    I am suggesting that knotweed, delivering antibiotics to the skin, eyes, heart and joints (and your article above mentions the skin being one of the areas where spirochetes were found after antibiotic therapy and which could later cause relapse)....could help to prevent those relapses, if taken alongside antibiotic therapy. Such at least is my impression based on Buhner's book, Healing Lyme. I just wanted to bring this forward as part of the solution to the problem.

    Perhaps as we find solutions, the controversy can be remedied too.

    For the rest, I still consider it unethical of doctors to turn deaf ears to their patients when they clearly are suffering. And the powers that be which are making this necessary for doctors to do, needs to be addressed in effective ways.

    What those effective ways are, may be an interesting topic of discussion.

    Best wishes and thanks for bringing this important point forward in your well-written article! Best, CI looking forward to sitting back and reading other peoples' comments now....

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  6. Chiquita,

    A few responses to your comments - I may elaborate more on these later, but today I have some appointments to attend, so I'm going to be brief.

    A) Doctors are first and foremost people. They aren't gods, and they're working within a system that has been broken for some time. Not everyone has agreed on how best to fix the medical system in the US - there have been heated opinions about it - but one thing everyone seems to agree on is that it has been broken in some way.

    I have at times put the blame on managed care for how doctors treat people. I think the pressure of seeing a patient for only 10 minutes then whisking them out the door has led to some initial assessments that were off and would have changed had the doctor collected more feedback from the patient.

    On the other hand, with a lot of conditions - a bad cold, the flu, broken finger, high blood pressure, etc. - it is relatively easy to determine the fix. An hour of patient review isn't usually necessary. It's only when symptoms present a complex picture that doctors begin to feel more pressure about the answer.

    Why varies from doctor to doctor, but time needed for assessment, having seen differential diagnoses that went sour, working with what a specific patient's insurance company will and won't cover, the doctor's own ego and desire to be right. the doctor's individual reasons for going into medicine, etc - all play a role.

    You said,

    "I think based on observation that many (not all, of course) doctors go by the book and by formulas. They may or may not have an open mind because of this model in practicing."

    This is part of the culture, coming out of med school. Med school is very demanding, there's a lot to learn in little time, and memorization has to be one of your strongest skills. There is always going to be a certain amount of formula involved - it's unavoidable - and in reality, when you look at the patient population as a whole, *most* patients are going to be easier to diagnose. Sometimes it might take more tests or watchful waiting, but most cases are usually sussed out eventually.

    It's the patients who defy what's memorized and make up the bulk of a doctor's experience with patients who are in a difficult position. Because at that point, the job of a doctor is to become a scientist, and to do their job well for those patients, they need more time and to do some research.

    And many really are seriously pressed for time... doctors often have morning rounds in hospitals on certain days to see patients, and they have meetings with other professionals, they attend conferences, and they have paperwork to do, plus cases to review, prescriptions to fill, and see patients, of course.

    I still know doctors can be caring and attentive even with all that going on, but it is harder to give patients the time they need if their condition isn't 'textbook'.

    You said,

    "Alas, those are the ones who are taking the risk in what I am increasingly perceiving to be a sort of over-regulated healthcare quasi-dictatorship, governed by Federal entities, as pressured by pharmaceutical and insurance companies."

    There is some truth in this. The question becomes how pervasive is it, and how much of it really is pressure from insurance on the government in order to increase their profit margins. Should insurance be able to override the doctor's treatment plan because it is high cost or because it falls somewhat outside the standard of care - even when the insurance company knows nothing about the individual patient and that their treatment has to be a bit 'outside the box'? No, I don't think so - I think the doctor should be able to make the best determination for the patient and let that stand. If the doctor is doing something dangerous or very experimental, then it makes sense for the company to deny coverage for it then put it towards a review where the doctor is involved.

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  7. (Chiquita - more, continued)

    You said,

    "Sometimes people assume that the government and its regulations protect us. I assert that individual conscience based on freedom, will protect us much more than government over-regulation."

    The role of government regulation has always been a difficult one. On one hand, someone has to have oversight of certain processes and conditions - limiting and avoiding industrial pollution, producing clean water, having safe highways - things like that. I'm in favor of protecting people on the basics without being overbearing.

    On the other hand, oppressive regulations which limit people's freedoms to the degree that they can't make certain individual choices for themselves which do not affect others are against what the US stands for and what people want and need...

    There is a fine balance to be drawn between *regulation* and *over-regulation*. How one finds it remains an ongoing issue.

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  8. Chiquita,

    I'm going to skip B for now and move onto C.

    C) The "It's in your head" position was present back when Polly Murray reported her symptoms to different doctors before it was known she - and others - were suffering from Lyme disease.

    This was back in the late 1960's and early 1970's, and one thing becomes clear to anyone reading it who has had to sit through sociology class: Ms. Murray was treated the way she was at that time not because of managed care - there was no managed care then and the medical system was different. She was treated the way she was because she was a woman.

    Sometimes I'd like to put a hidden camera in a doctor's exam room and by experiment over the course of a week, have both men and women enter the doctor's exam room with the same exact complaints and see if they are responded to differently.

    I've heard a lot of stories from my female friends about how their symptoms have been brushed off and labeled as stress or depression related. I feel for them, and some have left their primary care doctors for new ones because the response they received wasn't helpful.

    Not long ago, I posted the results of a study where women were anemic and doctors blamed it on their menstrual cycle. Told them to take iron pills. Later, it turned out they had anemia because they had gastric erosion and internal bleeding and needed treatment for H. pylori and other digestive problems.

    Given there was already evidence that women recovered from anemia after childbirth, it's troubling doctors were placing blame for anemia on menstrual cycles.

    So the issue of being female has led to doctors making some snap judgments based on it, rather than investigating the situation more. It's troubling to see this when guys would have gotten the proper tests for stomach problems right away.

    D & E) I am interested in Buhner, as you know - I've mentioned him before on this site. I need to read more of his hypothesis behind why certain herbs work a certain way before commenting further on those particular herbs.

    I think a big issue with Borrelia being so hard to treat is due to its antigenic variation. Generating multiple serotypes for one's immune system to fight off can overwhelm the immune system.

    Immune support is needed - but what, in scientific terms, does that mean? Someone made the request here a few days ago for me to write about the immune system. I think in doing so, we can both look at what immune support means and the bigger picture.

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  9. I want to say that so far I am very happy so far with the content of your site. I hope you can keep it up and people take notice.

    John S

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  10. Hey John S,

    Thanks. I hope I can keep it up too, whether people notice or not - sometimes it helps to organize my thoughts by putting them here, and people's comments back help me understand and question different sides of an issue or idea.

    So far so good, in terms of being able to read and write lately - but you know how it can be with these tickborne infections: unpredictable. I don't know if my improvement is temporary or permanent.

    Is there anything in particular you want to read more about - or some topic I haven't discussed of which you'd like to see some mention?

    Now that I think back on it... you mentioned something about persister cells, didn't you? I should add that to the topics queue.

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  11. C.O.------ your blog is good for newcomers to Lyme thinking. I do have to say that for a lot of us old timers some of the material has been hashed over a lot in the past------but if you can bring a fresh eye to the dilemmas (esp. from a science p.o.v.) then go for it!

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  12. cave76,

    Thanks for the feedback. As someone who's been a Lyme disease/TBD patient for several years and not a decade, I think I've seen a lot of the same things myself - but I've also seen a number of references made to subjects without any quoting from source or citations - so in a way, I'm trying to fill in my own deficits and share them.

    The Burrascano testimony from 1993 is one such deficit - I'd heard about it in passing, but didn't know what he actually said. Now that mystery is solved, and I've shared it with others who may not have known.

    If you want a fresh eye to the dilemmas directly involving the science, I'm planning to go there - and I want to do so in such a way that makes it accessible to more readers. Write so that a reader can walk through each step of my explanations sequentially and understand what's written.

    For example, it's harder to present and discuss papers on antigenic variation if readers aren't familiar with antigenic variation is and how it works. That knowledge rests on additional information that readers might not have been exposed to beforehand - so to really begin understanding antigenic variation, more information about the spirochete and the immune system has to be provided earlier.

    It might mean that those who have more background and have read more of the research already will be bored from time to time - so I intend mix it up with posts on newer research without as much background information or tutorials.

    Since you classify yourself as an 'old timer' - do you know or remember how things were socially and politically for Lyme disease patients in the 1980's and 1990's? Have you ever spoken to Ms. Murray? I don't know how long you have had Lyme, so I'm not sure if this would have been on your radar... I'm always interested in hearing what people have to say about what it was like back then.

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  13. I was very healthy all of my life until the middle 90's so I wasn't 'concerned' about Lyme (arrogance due to ignornance?) even though I lived rurally in an endemic county. I'd heard about Lyme, of course, and was bitten by ticks multiple times each year. But I believed the CDC mantra of 'no bulls eye' ---no Lyme. No 'flu symptoms' ---no Lyme!

    So when I virtually 'collapsed' one day in 1993/94? I didn't know what had happened. But of course I thought it might be Lyme and started talking to people and reading as much as I could. Internet forums were barely starting then but I did find a local in vivo Lyme support group that gave even more impetus to my thoughts of Lyme.

    Here's where the difficulty starts: 'Thinking" one has Lyme does not get past the ignorance or arrogance of doctor even in that endemic county. I, of course, was dx'd with Chronic Fatigue Syndrome by 15 doctors.

    I'm not sure how to address the 'socially and politically' issue. But I'll try just from my standpoint.

    Socially: while my close friends and family were sympathetic that I felt so terrible (could barely get out of bed) they had no real input. Some were 'delighted' that they thought they discovered the cause of my condition-----Fibromyalgia!
    Some thought that I should believe the doctors I saw and take an antidepressant.
    Some thought I should just stop looking for a reason and either--
    1. Meditate
    2. Visualize health
    3. Do breathing exercises
    4. Get a hobby
    5. Start doing aerobics (a doctor even suggested that to me, while I sat in front of him in a wheelchair)
    6. Or----- just ignore it and accept fate.

    My spouse was willing to drive me to the myriad of doctors that I thought might find out what was wrong or address the Lyme 'thing'.
    We had a van and a mattress was put in the back and I lay on that like a side of beef while he drove me there, in silence.
    Since I lived in on a remote ranch very few people stopped by to visit. Those who did felt they should stay for several hours because of the trip they made. A one hour visit was more than I could tolerate. Gradually they stopped coming. Then my marriage started to fall apart.
    (Long story, cut short)

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  14. Con't


    Politically? I'm not sure what to say. I never met Polly Murray. Opposite coasts. But I talked to people who did.
    Steere? His imprimatur was everywhere and most doctors I saw quoted Steere and believed what Steere said.
    I knew people who later became leaders in CALDA. I even, after I started feeling better (AFTER starting abx), did some text editing for the Lyme Times perhaps only because I had a OCR scanner? (grin) But my brain started slowing down again as abx plateaued and I had to quit.

    The west coast always had to play second fiddle to the east coast as far as Lyme goes. Even though it was proven many times that some counties in CA had as high a rate of infected ticks as CT. But CA was off the radar back then.

    From my personal view------- 'back in the day' all we Lymies had to do was to find a doctor who would test us via reliable tests, recognize that a negative WB didn't mean negative, and to put us on abx for almost as long as we needed it.

    That was no mean feat----- but thanks to the support groups there we were told of a few docs who upheld the later appellation of LLMD in it's true sense. So we thought we had it made. But as time wore on it became apparent that some would get better and some wouldn't.

    Tick co-infections were barely known about then, except for ehrlichiosis (and maybe Babesia starting to show up). No Bartonella known until about 2000?

    Lymenet became known, back then, for a premiere online support group. Now it's not! But it was valuable to me back then.
    Sci.med.diseases.lyme (before Lymenet) also went to the sewer thanks to a few disturbed people who took over.

    Real politics?

    The IDSA may have been instrumental in denying Lyme back then but not as overtly as later on.
    LDA (and it's child CALDA) started taking over. They did some good things. But in my opinion they've become too interested in promoting their importance.

    Who knows (not me) about all the bills that were introduced? AFAIK----- most of them had holes so big a car (or the 'opposition') could be driven through them, and were. Most made absolutely NO impact for the patients that needed help.

    (C.O.---- that might be an interesting exercise for you------ look back at all the 'Lyme' bills and see what actually happened to them (or how they helped patients.)

    FAIM----- Monica Miller (a lobbyist) and her side kick Ellen Lubarsky, aided and abetted by Pat Smith were partly responsible for the influx of 'nutraceticals' or supplements on Lymenet and elsewhere. Not that some supplements can't be useful to some people. (My disclaimer)

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  15. cave76,

    So you had Lyme disease even longer ago than 1993 or 1994 - you just don't know when you originally got infected? Wow, that is a long time. I'm sorry that you were so seriously affected and the doctors wrote it off as CFS and didn't really help. Were dismissive, even.

    I'm glad you found a LLMD who could help. Especially one in California. And it is strange that more doctors don't take note of that, because even the CDC endemic maps from years ago point out that Northern California and the Pacific Northwest are hotbeds of Lyme disease activity. Lots of ticks are infested. It's also in several research papers I've come across - some of them Dr. Robert Lane's (UC Berkeley - you might have heard of him as the guy who found out western fence lizards produce a protein that renders them immune to Borrelia burgdorferi infection - I'll have some of what that lizard is having, right?).

    I'm trying to figure out how it was that Steere managed to have a corner on the Lyme disease opinion market. Being first on the scene didn't hurt. But when you look at his early attempts to characterize the disease, he made errors early on - such as labeling the cause a 'virus' and not bacteria, even though right down the road in Groton, there was evidence the disease was treatable with antibiotics. And he associated it with arthritis early on - which it *is* associated with - but then glossed over the *rest* of the list of symptoms including the important neurological ones. To this day, he sticks with some of his old story - even though the research that is out there (some of which one has to have a subscription for or pay for - insane for many patients) discusses the serious neurological complications that can arise from Lyme disease and its neurotropism and other similarities to Relapsing fever.

    You said,

    "From my personal view------- 'back in the day' all we Lymies had to do was to find a doctor who would test us via reliable tests, recognize that a negative WB didn't mean negative, and to put us on abx for almost as long as we needed it."

    How do you think this has changed? Has it changed that much?

    You said,

    "That was no mean feat----- but thanks to the support groups there we were told of a few docs who upheld the later appellation of LLMD in it's true sense. So we thought we had it made. But as time wore on it became apparent that some would get better and some wouldn't."

    What do you think an "LLMD in a true sense" is, compared to one who is not? What is a "true LLMD", in your opinion?

    The not getting any better part - I've been seeing this over the past several years. I guess you've seen it going on for much longer. Why do you think people aren't getting better? Any guesses? Based on your observation, who did and didn't seem to get better over time?

    (more - continued)

    ReplyDelete
  16. (cave76 - more, continued)

    You said,

    "LDA (and it's child CALDA) started taking over. They did some good things. But in my opinion they've become too interested in promoting their importance. "

    Sounds like you think they've changed tracks. Why do you say they've become too interested in promoting their importance? They raise awareness about important issues, and I have found a lot of useful information on the CALDA web site - useful for many people on both coasts. It's certainly one site where I've found out a lot about bills in different states and IDSA-related news that affects the community... Your impression sounds like it's about something else, though... something they're doing or not doing that's different from the past.

    You said,

    "Who knows (not me) about all the bills that were introduced? AFAIK----- most of them had holes so big a car (or the 'opposition') could be driven through them, and were. Most made absolutely NO impact for the patients that needed help."

    This is something I've been wondering about lately - a number of bills have been passed in a few states already that protect LLMDs and allow them to prescribe long-term antibiotics and not be penalized for it. Yet in the states which have passed those bills, to my knowledge, very few new doctors have signed on to treat with long-term antibiotics. The LLMDs that were there and treating pre-bill are the same doctors who are treating with long-term antibiotics today. Why is that?

    You said,

    "(C.O.---- that might be an interesting exercise for you------ look back at all the 'Lyme' bills and see what actually happened to them (or how they helped patients.)"

    Thanks for the idea. See what I said above? It is something I've been wondering about... so I may investigate it further. Another item for the comment and mailbag list...

    You said,

    "FAIM----- Monica Miller (a lobbyist) and her side kick Ellen Lubarsky, aided and abetted by Pat Smith were partly responsible for the influx of 'nutraceticals' or supplements on Lymenet and elsewhere. Not that some supplements can't be useful to some people. (My disclaimer)"

    When I read that, 'FAIM', all I can immediately think of is this TV show that was on in re-runs in the late 1980's. The theme song was "Fame", too. I was just a kid then. Anyway... a lobbyist? What for? How is FAIM connected to Pat Smith? I know that Pat = LDA.

    True, supplements can be useful for some people... but it sounds like you're saying that pushing these nutraceuticals online for Lyme disease patients has been orchestrated by the LDA and FAIM? Why? Do you have evidence of this?

    ReplyDelete
  17. *****I'm trying to figure out how it was that Steere managed to have a corner on the Lyme disease opinion market. Being first on the scene didn't hurt. But when you look at his early attempts to characterize the disease, he made errors early on *****

    Being in that powerful IDSA camp didn't hurt. Being first------ yeah, I know that when I was trying to get dx'd (and would mention 'maybe it's Lyme') they almost always quoted Steere, sometimes word for word, like they'd memorized it. So I think that it was lazy doctors that only read Steere's article that were the enablers that helped Steere get his following------and he started to believe his omnipresence ?

    My editorial comment: sometimes it's enablers that do more damage. Staying quiet. Not questioning. And certainly not reading as much of the science that so many of us Lymies have read------ NOT just testimonials. Passing on the 'word' no matter how erroneous.

    Perhaps once he [Steere] attained that pedestal he was doomed to prove that he was right? (That's a bit of fairy tale I just invented---- but how far is it from the truth?)

    ReplyDelete
  18. FAIM (the original.) I've just learned that there is another FAIM showing up! How it's related to or even if it IS related will take a lot of digging. I'll just stick with the original one for now.

    C.O. asked:
    **** it sounds like you're saying that pushing these nutraceuticals online for Lyme disease patients has been orchestrated by the LDA and FAIM? Why? Do you have evidence of this?****

    Define 'evidence'.

    Evidence of all the people who were active in FAIM (and that included Dr. Burrascano) from the beginning? I have that.

    Who they were and what path they took afterwards is 'indicative' of having evidence--- those who praised it to the high heavens---- might be considered evidence i.e. if it looks like a duck etc......... then yes I'd say that LDA helped orchestrate it.

    Here is FAIM's mission statement presented in 1998. Dear Reader---- please read this and tell me what YOU think it means.


    Our Mission

    The Foundation for the Advancement of Innovative Medicine was conceived in 1986 and incorporated in 1989 as a voice for innovative medicine's professionals, patients and suppliers. This Foundation defines innovative medicine as a treatment or therapy of empirical clinical benefit that is yet outside the mainstream of conventional medicine. Innovative medicine is complementary to conventional medicine, offering alternatives as an individual situation may warrant.

    FAIM's first goal is the development of a membership to serve both as a forum for exchange and a constituency for change. The second is to educate both those within the field and the general public as to the benefits and issues of innovative medicine. The third goal is to secure freedom of choice and guaranteed reimbursements for the patients, be it through legislation, litigation, or negotiation with state agencies and insurance companies. And lastly, in laying the groundwork for a climate receptive to medical innovation, we encourage the research and development of promising new approaches.

    We firmly believe in the value of innovative medicine. We firmly believe in the freedom of individuals to make educated choices regarding their health and well being. Please add your voice to ours and help ensure freedom of choice in health care. Thank you.

    Michael Schachter, MD, President
    Serafina Corsello, MD, Vice President
    Pavel Yutsis, MD, Secretary
    Howard Hindin, DDS, Treasurer

    ReplyDelete
  19. cave76,

    Reading this: "This Foundation defines innovative medicine as a treatment or therapy of empirical clinical benefit that is yet outside the mainstream of conventional medicine," doesn't sound bad to me so far, nor does securing the freedom of choice and guaranteed reimbursements for patients for treatment.

    Right now, many patients get little to zero reimbursement for their LLMD appts, and if one is on IV antibiotics, they usually aren't covered at all... If these statements could apply to reimbursement for those sorts of things, I imagine a lot of people would see them as desirable. They wouldn't have an issue with FAIM's goals as stated in this letter.

    Now, tying in the pushing of supplements online to patients due to some alliance with FAIM? That's another story. Something separate from this letter - which at least on the surface seems pretty straightforward. Perhaps I'm missing something, and other readers will chime in.

    ReplyDelete
  20. C.O. said re FAIM's mission:

    ****"This Foundation defines innovative medicine as a treatment or therapy of empirical clinical benefit that is yet outside the mainstream of conventional medicine," doesn't sound bad to me so far, nor does securing the freedom of choice and guaranteed reimbursements for patients for treatment.****

    No, it doesn't does it?

    Define 'outside the mainstream'. That's the key.

    Freedom of choice? Yes, it sounds like part of the Constitution, doesn't it?

    I made a list, which I probably can't find now, of groups, past and present, that use(d) the buzzword of 'freedom' in it to promote their version of freedom. A lot of them were splinter groups of FAIM, after FAIM, the original, shut down.

    Do the readers here feel that 'outside the mainstream' should include such protocols as Rife, Salt and C? Those might be a little in extremis but where to draw the line? Many patients or practitioners didn't.

    A poster on Lymenet, during FAIM's heyday said:

    ****FAIM is a good organization dedicated to protecting doctors who do not just follow mainstream cookbooks in treating patients.****

    That can be taken two ways. It helped SOME doctors to be allowed to treat Lyme patients with long(er) term abx, but only in some states, not all.

    It also allowed some doctors to treat with ozone therapy.

    Allowing docs to treat with bismuth was another 'perk' of treating outside the mainstream a la FAIM.

    I don't think I'd try either of those, esp. the latter, simply because Dr. Robert Bradford, he of the movable office (grin), has promoted it.

    Bradford I'm sure was delighted when FAIM started promoting 'outside the mainstream' medicine. (Bradford is 'interesting'. Look him up and see if you can figure out just where he's 'practicing' now.)

    **** guaranteed reimbursements for patients for treatment.****

    Oh, that's way too easy! For the most obvious reason, I know of almost NO insurance company which will 'reimburse' for supplements. Acupuncture, chiro tx, B12 injections and a few others rx'd by an MD.

    And even with 'mainstream' docs and treatments, it all depends on the persons insurance plan. Nothing more, nothing less.

    ReplyDelete
  21. For an interesting read on Monica Miller (FAIM) go to
    http://tinyurl.com/4mwzrky

    Too bad it's in the Townsend Letter. :( But I'm sure the 'basics' are there.

    FAIM did produce some good actions: namely getting some states and some doctors to be able to rx as they saw fit.

    Too bad that gave rise to every 'doctor' or practitioner doing their 'thing' also. I guess ya have to take the bad with the good. Or, in my opinion, the good, no matter how little, with the bad.

    ReplyDelete
  22. cave76,

    Thanks for explaining more about why the letter from FAIM is something you question. It'd be interesting to hear about those other groups and why the original FAIM shut down, and what this has to do with the broader Lyme patient community. I don't know how many people know about this, and it would be good to know where different groups' interests lie.

    True, there is 'outside the mainstream' and '*outside* the mainstream', which are different degrees away from each other. I think bismuth injections and MMS would pretty much qualify as being 'out there' in terms of alternative treatment modes - not only 'out there' but not safe.

    I am aware of Bradford's history and know if he's practicing his quackery anywhere right now, it's inside the state pen. He testified in court that he was going out of his way to fear monger Lyme patients... everything I have read about Bradford at this point just pisses me off.

    Rife... I have no evidence it cures anything - though I have wondered if it can help people with their symptoms as a glorified TENS unit might. If so, that's okay by me - but don't go charging hundreds or even thousands of dollars for it, and don't make claims that it cures Lyme disease. Plenty of people have reported Rife didn't cure them and they felt ripped off.

    Salt and C... Where do I even begin with that? I know of a woman who was hospitalized after using Salt and C, and ended up being in that hospital for a long time before being released. It messed with her heart and her kidneys. It's not a harmless treatment, even though the individual ingredients sound pretty harmless in and of themselves... it is hard on the body and can lead to major problems in patients. I'm even pretty sure someone from CALDA made a statement against its use some time ago... I'm not sure where and when, though.

    So I'm not in support of these treatments, on the whole. I can get an actual TENS unit for less money, and have used one from time to time, along with ice and heating pads - and it does help pain, including nerve-related pain.

    And besides this: There are so many other things one can try which have been proven more effective at treating Lyme disease and other tickborne infections. Why bother shelling out for all this stuff?

    You said,

    "That can be taken two ways. It helped SOME doctors to be allowed to treat Lyme patients with long(er) term abx, but only in some states, not all."

    This is something I'm still wondering about: Why is it that if the protection exists for doctors in certain states to treat patients with long-term antibiotics, that more doctors from those states aren't treating Lyme patients? It seems to me those states would attract other states' LLMDs like magnets...and that other doctors who wanted to prescribe long-term antibiotics but weren't before - now could. But that hasn't happened. I find that notable. What is going on there?

    You said,

    "Oh, that's way too easy! For the most obvious reason, I know of almost NO insurance company which will 'reimburse' for supplements. Acupuncture, chiro tx, B12 injections and a few others rx'd by an MD."

    I have no problem with insurance covering things like this - certainly supplements have been medically indicated for me by my doctor since I was found to have a few vitamin deficiencies. Acupuncture, if doctor ordered it for pain treatment - same deal. Chiropractic... there is something I am more on the fence about, but it's a matter of knowing some of the risks of it in a few cases - I think it can help, as it's how I got rid of some entrenched lower back pain after a car accident years ago.

    I think in a free market economy, if people sell insurance that covers these items and you're willing to pay your insurance premium for them - sure, why not reimburse for them?

    ReplyDelete
  23. ****certainly supplements have been medically indicated for me by my doctor since I was found to have a few vitamin deficiencies. ****

    And I'd be willing to bet that your doc did some valid tests to find those vitamin deficiencies.

    Or he knew that taking a certain vitamin couldn't hurt you and might help.

    That's a lot different from 'here take this pill because I'm selling it.'

    I'M SURE YOUR DOC WASN'T SELLING THOSE VITAMINS!

    One 'famous' protocol:
    **** it includes 19 supplements. And if I'm not mistaken, they ALL come from Nutramedix****

    Nuff said. And look up Nutramedix---- it's interesting in itself.

    ReplyDelete
  24. Didn't take long! I just clicked on one "health freedom' hit and guess what came up? The National Health Freedom Coalition. (Got it all in there!)

    http://www.nationalhealthfreedom.org/

    Next click:

    http://www.nationalhealthfreedom.org/CoalitionHhomepage.html

    "Special Thanks to Dr. David Amrein
    National Health Freedom Coalition and Action wish to acknowledge Dr. David Amrein of the Dr. Clark Research Foundation for his generous support by offering a yearly matching grant to NHFC. To discover more about our matching grant and how you might participate, please click here."

    The name 'Dr. Clark' raised a red flag for me and this was next:

    http://tinyurl.com/4uxga5r

    "Dear Customer:

    I have known Dr. Hulda Clark's protocol since 1995 and visited her clinic for the first time in 1996. In 1998 I started to distribute products according to the books of Dr. Hulda Clark. It was my main concern from the start to adhere to her recommendations about product quality and production, and this has remained unchanged ever since (find my complete story below).

    Much has happened in these 12 years, I have witnessed many things and now I am more certain than ever that the Clark protocol is a promising alternative approach to health, because it has a holistic view and considers all the different aspects of the human body, from teeth to detoxification to nutrition to energetic balancing."
    snip

    Yup! Hulda Clark, who is deceased but her memory lingers on.

    So, three clicks of the mouse and I'm reminded yet again why the words "health" and "freedom" send a frisson of suspicion down my spine.
    About one minute was all it took, complete with reading the wondrous cures.

    ReplyDelete
  25. How did I miss this?? Musta been asleep.

    METCC

    Metropolitan Emerging Therapies Coordinating Committee

    http://www.lifespirit.org/wilton.html

    ********************************************************
    Then this:
    http://www.lifespirit.org/wiltondec.html

    The Wilton Health Freedom Declaration

    The Right to Heal and Be Healed

    During the millennium development of Anglo-American Common Law, healers repeatedly sought protection from the overzealous guardians of official medicine. From the time of Henry VIII's Herbalists' Charter1 protecting practitioners of the healing arts from interference by the medical authorities of the day through, for example, the Helsinki Declaration protecting individuals from experimentation without informed consent and the recent adopting of laws protecting the practices of healing beyond the limits of standard licensure, the political system has periodically both aided and hindered the healing arts.

    The persecution of innovative healers by constituted authority, however, continues to this day. From the persecution of Wilhelm Reich through the often decades long struggle of healers such as doctors Burzynski, Corsello, Levin, Carley and Clark for the right to practice at and beyond the leading edge, authority has far too often stifled creative advancement of the healing arts. For example, from the time of the first public reports of the benefits of Vitamin E for the normal functioning of the heart in the mid 1940's2 until the acknowledgement of this fact by the constituted authorities, fifty million Americans died of heart disease -- a disease which simple supplementation could have prevented in half of these individuals.

    We say enough! The time has come for healers and those they seek to help to band together and assert our Right to Heal and Be Healed.

    The health freedom advocates and healers meeting in Wilton, Connecticut on July 9, 2000 declare and assert our fundamental human right (arising together with the basic human rights to liberty, free expression and privacy) to Health Freedom of Choice. We demand an end to political, bureaucratic and judicial interference with these basic rights:

    1. Our right to control our own bodies and to make our own informed decisions about wellness and healing, even if those choices are not viewed by some appointed or self-appointed representatives of the "establishment" as the preferred treatment of the moment.

    2. Our right to freely and individually choose any modality for which the patient or guardian expresses informed consent.

    3. Our right of freely and individually choose any healing practitioner, regardless of school or methodology of practice, without restriction of license or certification, in private association or in the public.

    4. Our right to access to the nutrients and remedies we individually make the free, informed choice to use, without regard to local, national or international bureaucratic restrictions on ingredient, potency or use, and

    5. Our right freely to learn, to teach and to experiment, but not be experimented upon, without informed consent.

    In brief, we declare our independence from bureaucratic restrictions on our fundamental human rights and call for the establishment of an international alliance of health freedom activists, to defend these basic human rights and the healers, physicians and other practitioners alike, who we freely choose to help us achieve and maintain health.

    Adopted July 9, 2000

    Physicians, wellness professionals and other concerned citizens are invited reproduce or republish and distribute the Wilton Declaration. The Institute for Health Research, www.inhere.org is acting a Keeper of the Declaration and can be contacted through its web site.

    _________________________

    Notes

    1 Herbalists' Charter, http://home.earthlink.net/~lifespirit23/herbcharter.htm

    2 Time, June 10, 1946, The Shutes and Vitamin E

    ReplyDelete
  26. Qoute from your entrance post: "They were obviously interested in a cure. Many had found that the prescribed four-week treatment with antibiotics was not sufficient, and that they relapsed if not treated for long enough period of time. "

    What IF THERE IS NO "CURE" = elimination of all B.b? Try a higher dose, a combination (which becomes riskier the more is combined!)? Even increase the duration of extremely costly i.v. ABs - which of course increased PROFITS for the producer of the (then) patented ceftriaxone (BILLIONS!!!)? Could it be that part of the pressure groups were sponsored from such profits?

    If THERE IS NO CURE, the rational conclusion would be - quite simple - to kill the reemerging "bugs", with a SHORT course! And because some signs and symptoms disappeare VERY SLOWLY, the next step is to do the SHORT COURSES "in advance": do not wait until trouble reappears, but prevent it by A SHORT COURSE. (That's analogous to retarded morphine in chronic pain: dosage by the clock, not by re-appearing pain. That works indefinitely, no dosage increase: EBM!)

    Now if it would be accepted that doxycycline is FAR better than ceftriaxone (ORAL! MUCH lower dose = less problem for elimination by liver / kidneys, INTRACELLULAR effect - and effective against most of the discussed co-infections!!! ...), and following the suggestion of Prof. Vera Preac-Mursic, we arrive at a REGULAR doxy "pulse" (dosage and length to be determinded...) at intervals to be found out, empirically.
    That's what I started almost 18 years ago - and it worked (for me), see my comments on the post "Finding the Right Treatment".
    Is this rational, logical? Are these valid arguments?

    In the very long intitial comment(s) "natural" ABs are propagated. HEAVENS: where do those people think (most) ABs come from?!?!?!?!? Penicillin from a ?mould: isn't that natural? The ?mould defends itself against bacteria.
    That's the same with lactic acid (lactic bacteria), ?vinegar / acetic acid or alcohol!!

    It is very little known that millenia ago in southern Egypt (Nubia) a way of brewing sorghum beer was developed which had an effectiv concentration of tetracyline (one of the early ABs) in it. Tetracycline binds to bones, so it can be found in the bones from the graveyards of that time.
    So is this natural? Alcohol of the beer = natural, but the tetracycline = "chemical"? BS!!!

    Tetracycline has poor pharmacokinetic properties, so pharmaceuticl chemists improved on that: increased lipophilicity. In this way they got doxy- and minocycline, which are absorbed very quickly, bind to plasma proteins, which increases the half life of elimination to almost a day, and lipophilicity allows these tetracycline derivatives to enter the CNS via the blood-brain-barrier, a prerequisite to treat CNS infections.

    So is this "bad"? No: it's a natural substance, tetracycline, "optimized"! The dosage can be MUCH lower because of slow elimination / long half-life. Because of very rapid absorption there is almost no risk of disturbance of the intestinal flora (wihich can be life-theratening with lots of other ABs.).

    Of course such derivatives have to be tested for (new) risks. Doxy has been on the market for almost half a century - and probably is the best AB for infections susceptible to doxy. (There is a minute risk of liver problems with long-term usage, like in acne: with minocycline this risk is about 4x higher, that's why doxy is to be preferred.)

    From representatives of "big pharma" I know that they HATE doxy: it's SOOO GOOD - and no money to be made on it any more! So they campaign against it - details would fill pages...
    chen-men

    ReplyDelete
  27. chen-men,

    I have responded to comments of yours which are very similar throughout this blog.

    Refer to my responses linked to this comment:
    Here, on the Canary In A Coal Mine post.

    CO

    ReplyDelete

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