Monday, March 14, 2011

16 The Rumor Mill

So, some interesting rumors have been getting back me. Normally, I wouldn't care, but some of these are just so out there that I've decided to nip some in the bud.

I've already discussed the question of being Lyme Enigma (I'm not) so we can drop that one right away.

Some of the rest of the overheard stuff:

Is CO the maintainer of LNE or some other group? Is CO against ILADS because they showed up on LNE? Is CO against all alternative medicine? Is CO an infectious disease specialist? (What the... I already answered that in the FAQ.) Is some weird other group of people behind the creation of CO? (Love ones like that - the more vague the assertion, the better the rumor?) Is CO this... that... Etc.

Two things I have to state, right up front:

I began writing this blog to point out the poor journalism in The Chicago Tribune and to do a complete deconstruction of the horrible writing of Chronic Lyme: A dubious diagnosis. And it took off from there. There was no particular plan, really, beyond that.

I focused more on science because it's an interest of mine, and not as much on the patient experience. I did a bit of that, too, but I never set out to make it a focus.

Lately I've been focusing on other topics that were not originally the focus of this blog - but situations change, and sometimes due to circumstance or something newsworthy to me, I will write about something else. Like censorship. And if it is a topic that continues to interest others, I might give it more time, but I never want to lose the science aspect of the blog.

In terms of groups...There is no group of people behind the creation of this blog. It was one person's idea: mine. I may be on LNE and other groups and lists, but I'm not maintaining them. Also, as a member of any group, I'm not on here to represent any of them - I'm writing independently, for myself, and posted content is my idea.

Now, on to the rest of the rumors...

I'm not anti-ILADS. I appreciate very much that ILADS exists and has helped so many patients. I am pro good doctor and pro good LLMD, regardless of whether or not that doctor is a card-carrying member of ILADS or not.

I am not happy with doctors who give the profession a bad name because of what they do outside of work or against their better judgment.

I'm not against all alternative medicine. What I'm against is the idea of desperately turning to anything and everything without some evidence it will be helpful and worth the money.

I understand desperation... I've been close to suicidal with pain. I've taken herbs and have had acupuncture. In my experience, the herbs I used were okay and the acupuncture was really good at alleviating pain. So far, what has done the most good for me has been antibiotics and antiprotozoa medication, and there's plenty of evidence those work for what I've got. Acupuncture runs a close third.

I'm not against alternative medicine but I am against how people with chronic illness - including Lyme disease and other tickborne infections - are targeted for the sales of certain protocols and herbs and supplements.

I've seen a lot of spam. And then when it hasn't been obvious spam, it's been more subtle soft-sell approaches like people joining mailing lists in order to slowly tell others what's been working for them - only to find out later that they are a seller of the product or get a cut of the profits.

I don't like this - I want to hear from other patients who have no stake in the company talk about an herb or supplement. Like my issue with the IDSA, I don't want any conflict of interest or bias in my selection of alternative medicine. So for me, it's very important to know the person writing is another patient just like me - and is speaking from experience and not trying to sell me something.

I don't know if you can imagine how many supplements and treatments I've seen come and go. A lot. It'd be good to keep a reliable database somewhere showing which treatments gave the largest number of people the most symptomatic relief and the lowest number of side effects.

To add one more thought on this, I'd like to see more research on more effective antibiotics and technology to fight Borrelia and stop it in its tracks; do something to stop the antigenic variation because I think that's a big part of why it's hard to beat.

I'm not an infectious disease specialist. The thought of it turns my stomach right now... Even if I were one, I would be in the outlier group of them who would have a lot of questions about what to do to come up with better guidelines.

On being this, that, or the other, Etc. People keep trying to guess more personal information about me. I don't want to reveal it for my own reasons. If I drop hints, they're inadvertent, and I'd really rather focus on what's been written about Lyme disease and tickborne infections. If this changes, I'll let you know. Otherwise, the rumors will just have to continue.

16 comments:

  1. "I'm not an infectious disease specialist."

    I just love how calling someone an ID doc is an insult in this community.

    ReplyDelete
  2. Hey, I don't want the job, Anonymous.

    I think it'd be a very demanding job to do, outlier or not. I'm not treating all infectious disease specialists the same - I'm sure there are good ones somewhere. I don't want to be an anesthesiologist for similar reasons, even if the money is good - it's too demanding a job, along with the risk of getting it wrong.

    ReplyDelete
  3. I use RJ Anonymous as a tribute to the great blues singer, Robert Johnson, who wrote the eerie blues songs, Hell Hound on My Trail and Crossroads and who reportedly, according to legend, sold his soul to the devil in exchange for his virtuosity on guitar and vocals.

    Now, I hear the rumour that CO is both "Anti-Devil" and "Anti-blues" because no one has produced a double blind study to verify the passed-down-by-word-of-mouth folk-tale about the life of Robert Johnson. Next, I suppose, CO will be refuting that Robert Johnson was poisoned by a jealous woman in a juke joint in the Mississippi Delta!

    Rumor has it that CO coined the term "wacko undesirables' as a way to describe CLD patients who believe in "The Big Conspiracy Theory", that "they" are all out to get us either with chem trails or if that fails with some other outlandish scheme (like orchestrating an earthquake followed closely by a tsunami thus begetting an alleged nuclear catastrophe in order to spread lyme disease disguised as radioactive fallout).

    It's clear, despite all rumours to the contrary, that CO is now at the center of the CLD universe.

    Oh, yeah, I forgot one thing, CO has the cure for CLD and is holding back on it till he can patent it and make an even $One billion dollars off of us poor sufferes.

    Believe me, you can take it to the bank, it's all true!

    ReplyDelete
  4. You keep spinning them that way, RJ, and you'll have them believing anything.

    Yes, didn't you hear that some guy put some timers and stuff underground near a Pacific Rim fault line in hopes of sinking Japan's economy? Or wait... I think that was the plot to "View to a Kill"? Nevermind.

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  5. Here is something I have learned, from life itself.

    I have been on both sides of the fence, and know this dynamic very well.

    I have learned, that the more we read into people and their actions, who they are, what motivates them...the more we think we are right, the more we KNOW we are right...the more wrong we usually are!

    We can have 100 pieces of evidence in front of us to support our conclusions. Again, we don't think xyz about someone, we KNOW! After all, the evidence proves it, doesn't it??

    HAHA! Gotcha there.

    That's exactly where I have been on both sides of the fence.

    I know from having been misunderstood myself, based on all "evidence" (after all, neuro symptoms from lyme will surely hold back a person's career and this bears no reflection on their commitment or sincerity about their work, does it?? Hello???) that just when we think we have someone all figured out, is when we are really the most wrong.

    I too have analyzed others and been wrong. And I thought I had all the pieces of the puzzle, locking the very last one neatly into place...to draw my firm conclusion.

    But I was still wrong.

    Evidence can point to a lot of different things. 20 or 30 interpretations can exist, given the same pieces of evidence, and all can seem correct based on that same evidence.

    One could say that I was flaky and uncommitted to my work because after all, I didn't perform. That was the career-wide rumor about me. But it wasn't true. It was lyme disease causing neuro stuff. And it went chronically undiagnosed for 30 years!

    See how unfair we can be to people as we think, as we KNOW just what motivates them and who they are? And as we talk this FACT around, this PROVABLE fact?

    Well we are so wrong, and we are doing so much harm.

    Where do we ever get the nerve? Who gave us permission? Why do we think this is so okay? Gossip and analysis of others can sabotage careers.

    On another subject, Camp Other, I really would love for you to be reading the science-based literature in naturopathics today. I have seen authorities who will blast mainstream....rumors, dare I say it??....about herbs even at risk to sales, just to set the records straight. I have seen full disclosure about side effects that occur once in every twenty years (while other things are legitimate concerns and can happen more often). I have seen people who know more than doctors about certain scientific things and the research is really astute. I think you would be very surprised. It is not at all a sales game, it's a healing game backed by research to let the public know what the realities really are.

    My two cents worth.

    Take care, Chiguita Incognita

    ReplyDelete
  6. PS Camp Other
    There are herbs and naturopathics that can help with some pain conditions, but for the most part I would say that the mainstream medication works better in this situation.

    ReplyDelete
  7. Hey Chiquita (I think you meant that, and not Chiguita?),

    People spread rumors and gossip because partly they're testing the waters and seeing if anything will come back that's true, and partly because it's human nature to discuss what you think of as 'news'. That's what I think so far.

    Sometimes they're right, sometimes they're wrong... sometimes the truth comes out in the end, and sometimes you'll never know. I can't bother with much of it, so I don't. If a correction is needed about where I stand, I'll offer it, and as time goes on it's good to check in because I might change my understanding of something.

    You said,

    "We can have 100 pieces of evidence in front of us to support our conclusions. Again, we don't think xyz about someone, we KNOW! After all, the evidence proves it, doesn't it??"

    I don't know. I don't always know. I make my best guess and run with it, but I'm always prepared to hear new information and evidence, analyze it, and change my position based on it if needed.

    I don't know your full story any more than you know mine. We both know that tickborne infections have changed our lives, and that something about these illnesses makes them harder to treat than most conditions. We also know that there is a controversy around them, wherever you sit on that spectrum of thinking of who has the facts and who doesn't.

    It's that commonality one can build on to discuss the issue. Over time, I'd hope to know what everyone thinks and what their story is. But it's not something that can be done overnight. It takes time.

    You said,

    "Evidence can point to a lot of different things. 20 or 30 interpretations can exist, given the same pieces of evidence, and all can seem correct based on that same evidence."

    I think at first that's true, but as time goes on and one collects more evidence, certain interpretations rise to the top as 'the best common candidates'. One begins to pursue the most likely possibilities and has to abandon others in order to focus their time, effort, and knowledge in given directions.

    You said,

    "One could say that I was flaky and uncommitted to my work because after all, I didn't perform. That was the career-wide rumor about me. But it wasn't true. It was lyme disease causing neuro stuff. And it went chronically undiagnosed for 30 years!"

    I am sorry to hear that. I think a lot of people reading your comment right now can relate to it - including me. I suffered from a decrease in performance - not because I was a bad employee, but because I was sick. Those who knew me well knew it was because I was ill. Very few knew with what. It is unfortunate that some people characterize you wrongly based on limited information, but that is what people do - it's just like gossip.

    And doctors are wrong. Is it intentional, or is it lack of training? Is it over-reliance on testing for diagnosing? Is it because they are under pressure to see so many patients in so little time? Is it politics? I've talked to some doctors about this sort of thing, and it is a pressure situation. It needs to change, clearly - I think there is no controversy over an early diagnosis with any tickborne infection, and early treatment would be better for all concerned. But for the rest of it? Complicated. More than I can say in a comment.

    Thirty years is a long time. Too much. I am angry you or anyone else has had to suffer for more than a few months, let alone thirty years.

    (more)

    ReplyDelete
  8. (For Chiquita - more)

    You said,

    "Where do we ever get the nerve? Who gave us permission? Why do we think this is so okay? Gossip and analysis of others can sabotage careers."

    There's a reason people use usernames online. Probably many reasons. But your comment on people being concerned about their careers applies to many people, I'm sure.

    It would be great if it didn't matter and people felt freely to say what they wished all the time and have it be okay. I can't think of a time in history where this has been the case.

    With freedom comes responsibility. If you say something, you own it - and people are afraid of owning what they say sometimes if they're wrong. That's another part of gossip and rumors - they are often passed on from some unknown source and thus harder to verify. If something is harder to verify, then the original source can't be held responsible.

    You said,

    "On another subject, Camp Other, I really would love for you to be reading the science-based literature in naturopathics today. I have seen authorities who will blast mainstream....rumors, dare I say it??....about herbs even at risk to sales, just to set the records straight."

    Okay. Let's investigate that literature. I know you've posted links here before, and I intended to get to them earlier. How about posting those again, so I can take a look - and add other links you'd like me to review?

    You said,

    " It is not at all a sales game, it's a healing game backed by research to let the public know what the realities really are."

    I'll repeat what I've said before: I'm cool with alternative medicine when there's evidence to back it, and/or if the risk is so low it's clear trying it is worth the risk.

    I hear that you say it's not all a sales game, too, but you have to understand that I have seen a lot of web sites online and posts which try hard to pitch their products using certain sales techniques that are targeted towards people with Lyme disease and chronic illness in general and I didn't like them. My dislike of these tactics in no way reflect the fact that some herbs and treatments actually work and and are helpful. These are two separate issues.

    If more alternative product web sites have had independent research conducted and post that, and the researchers don't have a conflict of interest or bias, I'm more likely to consider it. When there is less research, it takes longer for *me* to make my own decision about what to take, and it's easier to look at herbs and consider their use when they have been used by many people for many years with few reports of side effects.

    At some point someone decided to eat tomatoes and that was a risk. Then enough people were eating tomatoes that didn't get sick and die, so humanity figured out tomatoes were okay. But that first person who ate a tomato? I don't want to be that person. I suggest other people aren't either, until we see rats and cows and other creatures eat the tomatoes and go on to live. And even then... sometimes animals can eat things and be fine, and we humans can't.

    Risk. It's all about risk reduction. After that, it's all about benefits.

    ReplyDelete
  9. Hi Camp Other
    Thank you for such a detailed, friendly and thorough response as usual. This is very considerate of you to take so much time, much appreciated.

    I would love to respond in a more personable way tomorrow but since it's getting late, I will instead answer your questions about reading sources for science-based naturopathics.
    This will be mostly herbal because that's what I have been focusing on, though surely more is available for naturopathics across the board.

    www.healthy.net here is where people can search for any health topic, with articles posted only by renowned naturopathic physicians and practitioners. Highly trustworthy information. Nutrition info is by Dr Elson Haas (and others) and the Herbal Medicine Center is by phytotherapy authority David Hoffmann, and offers some good details scientifically.

    www.pubmed.gov here you can look up herbal and naturopathic studies, as well as mainstream medication studies.

    www.herbmed.org here your doctor or pharmacist can look up herb-drug interactions (not always unbiased information, several schools of thought reflected here and some may conflict).

    Continuing in next message with books...Best to all, CI

    ReplyDelete
  10. BOOKS:

    Lyme specific: Steven Buhner Healing Lyme the well known classic, discusses studies about lyme-specific herbs and treatments. Very well written and details about body chemistry, such as which specific immune cells are bolstered by certain herbs and when this is desireable/undesireable, reflects an astute practitioner whose knowledge we can all benefit from on our get-well journey. Lots of information about neuro toxin protection, how to treat lyme that is not responsive to antibiotics, why this occurs and what to do about it. Very valuable source and well known.

    The Following Books are *Not* Lyme-specific:

    Potters Herbal Cyclopedia by Elizabeth Williamson, she is a herbal pharmacist with multiple degrees after her name. This book lists herbs by common name alphabetically, charting herb constituents, referencing studies done, and also offering lay-friendly use information. Truly fantastic. Be sure to get Elizabeth Williamson's version, there is another book by the same title by a different author.

    Pocket Guide to Herbal Medicine by Karin Kraft, MD and Christopher Hobbs, LAc AHG. This book is by the doctor who spearheads the Commission E in Germany (the equivalent of the FDA) and unlike docs in our own FDA, she is pretty herbally astute. Germany is on the forefront of research in phytotherapy. Christopher Hobbs is a walking encyclopedia, he will draw molecular chains on a board about any herb without looking up a thing, mention which patients participating in a study had which medical vulnerability prior to participating and how that affected the outcome of the study, much more, has 35 years practicing experience....this book discusses treatment regimens, compares the efficacy of individual herbs with mainstream medications and is surprisingly full-disclosure. "Further studies are needed" "The medication works better in Situation X" "The Herb works better in situation Y" and explains the constituents' actions, mentions drug-herb interactions in brief, etc. A very handy and small but thorough reference.

    Christopher Hobbs's Natural Therapy for your Liver is highly recommended. Charts which herbs are "cooling", "warming" for the liver, which are enzyme stimulating and which not, etc.

    Medical Herbalism by David Hoffmann, FNIMH AHG is a 1000-page herbal educational manual with a reference section in the back. This is for clinicians and practitioners, goes into herbal chemistry, discusses how to use herbs for different body systems, and the like. The herbal reference section at the end is organized by Latin name but contains a lot of scientific information. The whole book is about exactly that: Science in herbs.

    Herbal Constituents by Lisa Ganora is a book about herbal chemistry offering an education from Step 1 to advanced, very thorough and well written.

    Herb, Drug and Nutrient Interactions: Clinical Implications and Therapeutic Strategies by Mitchel Bebel Stargrove, ND LAc, Jonathan Treasure MNIMH AHG, Dwight L. McKee MD

    This book is absolutely the most fantastic I have seen for science-based information about herbs and nutrients alike. The herbal information goes far beyond what is offered in most books I have seen. A lot of thick medical terminology is required, boo. This book has impressed several physicians I have shown it to and has been praised for being objective, thorough, and for providing info about *positive!* interactions as well as undesireable ones. These positive interactions are noted to be absent from other books. Details about pharmacology and plant chemistry alike are impressive, and the authors address many commonly-asked questions about herbs and studies thereof by the mainstream. Very insightful and thought-provoking, with a wealth of information about use for herbs and nutrients alike. (This book is mostly about nutrient/drug interactions because very few herbs interact with mainstream drugs).

    I hope this helps!

    Best wishes to everybody, CI

    ReplyDelete
  11. Thanks for all your links and references, Chiquita. It's going to take a while for me to read and review them, so don't expect a post on them right away.

    For all my readers: I'm having a somewhat sick day today - don't know if it's a tickborne infection related issue or if I am coming down with something, but I may be slow to respond to comments and post new posts for a while. I'll try to get to your personal emails today if I can - I know some of you who have been reading along are waiting on those.

    ReplyDelete
  12. Hello Camp Other et al
    I surely wouldn't expect anyone to read all those books et al! I was merely listing them as reference source for anybody who is interested.

    These will be sources that are very scientifically detailed and astute, concerning herbs that mostly are not lyme specific per se. Instead, they would be for adjunct herbal support (ie for detoxing, body system support, whatever other issues came up). The exception of course is Steve Buhner's book, which is lyme specific and goes into scientific studies, yes.

    For anybody else who is interested to know about herbal research, the American Herbalist Guild emails studies logged anew onto the Pubmed government medical database, every day. You can sign up for the daily emails at the American Herbalist Guild site. There are usually at least 12 or often 18 studies anew every day.

    Again nobody could expect you to read about four thousand pages at a drop, please! Thank you for your motivation anyway and best wishes, CI

    ReplyDelete
  13. Dear Camp O,
    My hubby was diagnosed with als, but then got a positive test for lyme & ehrichlia chafeenis (sp?) from IgeneX lab.
    He has a paralyzed diaphragm which isn't the first symptom of als or lyme.
    Have you heard of this before with lyme?
    He is now on IV Azithromycin and tried several orals but always gets sick.
    His breathing difficulty makes it harder to try herbs and other therapies, as herxing could be worse for him.
    He has to use a Bi Pap machine for sleeping at night.
    Symptoms are weak and atrophied thumbs, his legs feel rubbery, he has neck pain, he has lost 50 lbs. and of course his breathing is the worst.
    Any suggestions would be greatly appreciated.
    Thank you so much for your blog.
    Hope your not coming down with the flu.
    dlo

    ReplyDelete
  14. Hi dlo,

    I'm sorry your husband has not been doing well and has been in so much pain. Having a paralyzed diaphgram and all the other symptoms you mention are uncomfortable at best and feel scary at worst. Please give him my regards and tell him I hope he finds some improvement soon.

    A diagnosis of ALS is very hard to receive, and tickborne illnesses are a much better diagnosis to receive, but they can still can be difficult to manage.

    Before I continue, I'm going to apply the 'standard disclaimer' here and state that I am not a medical doctor, and anything I say here should be regarded as informational and not regarded as medical advice.

    Now that the disclaimer part is out of the way... Without being his doctor and knowing all the tests that have been run, I couldn't say for sure that he doesn't have ALS. It is also possible to have both tickborne infections and ALS, which is a very hard road to travel. On the other hand, he may only have tickborne illnesses which manifest as an ALS-like condition. If the ALS he's experiencing is atypical in presentation, then it's important to investigate other conditions.

    Every once in a while, a case study turns up in a Lyme disease patient where paralyzed diaphragm *does* occur. Usually what happens is a nerve that affects the diaphragm is affected (phrenic). Some examples:
    http://erj.ersjournals.com/content/13/3/700.full.pdf
    http://lymemd.blogspot.com/2008/10/paralyzed-diaphram-case-report.html

    So, it's possible Lyme disease could be the cause of his symptoms.

    There is another consideration, and this one comes by personal experience: I lost a lot of weight, had trouble eating, chest pressure, and trouble taking deep breaths when it felt like my own diaphragm was 'stuck'. Further investigation led to a diagnosis of Babesiosis, and once I received Mepron and Biaxin as treatment, the symptoms improved dramatically. I had little herxing and it was shortlived, and now I can eat and breath fully.

    He's already on Zithromax. Adding Mepron to his regimen - if he can tolerate it - may yield similar improvement. I suggest discussing it with your doctor - tell him/her 'I heard that Babesia might cause this' and see how it goes. Best wishes to you both.

    ReplyDelete
  15. My dentist who removed the amalgams from my teeth recovered from ALS after having his fillings removed.

    The mercury can cause many neuro issues, including ALS, MS and more.

    Here is one woman's very powerful testimony for the FDA panel of her paralysis from mercury and MS, which went into partial remission after she had her amalgams removed:

    http://www.youtube.com/watch?v=9-qhxa-3Wbw

    Here several studies showing recovery rates from various malaises after amalgam removal was completed. Note that some of these are neurological in nature (though they do not specifically mention ALS, but one study does mention MS recovery rates).

    The first study by one dentist shows which patients reacted to which metals, and how many recovered not at all, in part and in full from various issues:

    http://www.lichtenberg.dk/symptoms_before_and_after_proper.htm

    This study of 1500+ patients is compiled by the Society for Toxic-Free Dentistry, based on the studies of multiple dentists. It also includes info about recovery rates from mercury detoxification after amalgam removal. This is very important because mercury can cling to brain, spinal cord and bone tissue for decades if not properly detoxified, according to toxicologist/immunologist/dentist/researcher Hal Huggins, MS DDS:

    http://www.flcv.com/hgrecovp.html

    I agree with Camp Other that it could be related to lyme.

    But then again, it could be related to so many things. So many illnesses can all mimic each other. And many things can have multiple contributing factors. How are we laypeople to know? We can't and we don't. That's why we need a doctor's diagnosis and treatment.

    But we laypeople can support each other with info and experience, and suggest that this info be taken to your doctor for further query/treatment.

    I offer this info in exactly that spirit. I am not a doctor. Just wanted to respond with further things to check into as possibilities, including lyme and something else which I happen to know can contribute.

    And I thought the studies/video here might interest people.

    A fellow lyme patient/friend also told me she had heard that lyme can cling to mercury. I have not researched and verified this as fact but it is an interesting assertion and it sounds plausible to me. It would be interesting to find out more.

    No matter what, if there is mercury toxicity, according to Huggins it is considered by toxicologists across the board to be the most toxic substance on the planet, save for two radioactive isotopes which surpass it, he writes. He says that it inhibits immunity and the nervous system, each alike.

    Huggins has a dbase of 65,000 patients world-wide and their recovery rates after amalgam removal. He has been researching on laboratory animals and doing studies wiht consenting adults for 35 years, above and beyond the figures above. He has trained dentists in a method of removing fillings which he developed, to grant advanced protection from mercury re-exposure during drilling and removal. I have yet to see a protocol as protective as Huggins's method, and myself had a Huggins-trained dentist do this work. Despite being an environmental illness patient at that time, I had Zero symptoms of mercury or other toxicity after the removal had been done.

    I hope this helps someone else. I can't imagine how we can get well from lyme if our immune and nervous systems are poisoned by mercury. So I wanted to throw this in.

    Best wishes, CI

    ReplyDelete
  16. Chiquita,

    I agree that people healthy and unhealthy should avoid mercury. I don't have to quote Huggins or read his book (though I did, years ago) to independently come to that conclusion.

    I don't have any evidence that Lyme disease spirochetes cling to mercury. Manganese, though? I'll believe that:
    http://spirochetesunwound.blogspot.com/2009/04/manganese-transporter-of-iron-free-lyme.html

    ReplyDelete

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