In cancer science, many “discoveries” don’t hold up, by Sharon Begley, a disheartening story, published today. Without integrity, there can be no science. This is probably how we got sick in the first place, though in the early years, it was more likely scientists doing whatever popped into their heads willy nilly, like Victor Frankenstein, with no framework for evaluating the possible consequences. With statistics like the one presented in Ms. Begley’s report, it seems folly to expect “science” to save us now. The system is completely broken.

The same problem with integrity in reporting results extends to doctors. This problem is particularly rampant amongst LLMDs, who continue to make exorbitant amounts of money harming patients, extolling the virtues of “sophisticated” combinations of antibiotics for “seronegative Lyme”. Not that Lyme Disease isn’t real, but it can’t be eradicated in the way they are trying to do it. Problems with a generalized lack of scientific integrity aside, here is the first paper I’ve ever read that adds something to the clinical picture.

Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection by Embers et al.

They infected monkeys with Bb and found that treated or untreated, the monkeys demonstrated persistence of the organism and inflammatory changes. Therefore trying to eradicate Lyme with endless courses of antibiotics is not the most sensible course of action, acknowledging the exception of a small subset who do relatively well on old fashioned acne treatment. Antibiotics are a double edged sword at best, particularly in the setting of preexisting dysbiosis.

My hat is off to these researchers for their fine study, sensible discussion and clear attempt to give physicians in practice something to work with. A marker!

In some cases, patients who have been treated for Lyme disease experience persistent symptoms. The assertion that further antibiotic treatment is warranted in these cases is a matter of contention and considerable debate [33,34,35,36]. Our results indicate that disseminated spirochetes of two different B. burgdorferi strains can persist in the primate host following high dose, or long- lasting antibiotic therapy. In terms of disease, only objective signs of disease post-therapy may be measurable in an animal model. While we did not find gross signs of disease postmortem, in Experiment 1 we did identify heart sections with inflammatory infiltrates in three of the treated animals. In addition, several animals, both treated and untreated showed sections of heart and meninges that were positive by immunofluorescence for B. burgdorferi. At the molecular level, B. burgdorferi DNA would indicate the presence of organisms, live or dead. The detection of RNA, however, should indicate that those present are metabolically active and thus alive. In Experiment 1, spirochetal DNA and RNA were detected in the tissues of a few animals, independent of treatment. This may reflect a low spirochetal burden, lack of flaB transcription [37], and/or seclusion in untested tissues.

And this:

The most pressing question in terms of human disease is whether or not spirochetes remain pathogenic after antimicrobial therapy. Similarly, do spirochetes persist long-term, or are they eventually cleared by the host? Clearly, the phenotype of persistent organisms needs to be elucidated. These studies support the use of the C6 test for diagnosis and measurement post-treatment; however, the absolute quantification of antibody levels may be essential in determining treatment efficacy for PTLDS patients, as low levels (yet above baseline) may indicate presence of residual spirochetes or antigen. Finally, the use of variable and pulse-dosing regimens of antibiotics may improve efficacy [43] and this warrants testing in an appropriate model.

That pretty much says it all I think. My daughter and I were an inappropriate model for a doctor testing various pulse-dosing regimens by trial and error on sick people, instead of monkeys. Saving a few isn’t an excuse for worsening the tenuous condition of the others, while claiming cure of a huge percentage, with no data, especially since the “treatment” takes years to evaluate. Treatment worse than the disease. Russian roulette. From my email yesterday:

I  want to very much thank you for steering me away from ILADS doctors! As I said, I went ahead and did a trial of antibiotics to “provoke” Igenex testing, just to settle the question for myself, and I ended up with acute pancreatitis (I do not drink alcohol; it was the antibiotics), and then an immune fatigued body so sick I was hospitalized twice with pneumonia after catching a flu (my husband says he was worried I was near death — I had pneumonia for six weeks).

After all this (and what would have been thousands of dollars in testing if I weren’t billed at the Medicare rate by Igenex and if the testing hadn’t been covered for me  by insurance), my labs for Lyme AND coinfections were flat negative (except for band 41 and mycoplasma). The ILADS doctor nonetheless encouraged me, based on this, to travel to another specialist and get a port, so we could provoke and continue treatment with even stronger drugs — and said I mostly certainly had “seronegative lyme” no matter what because of my symptoms of ME and tourette’s syndrome. I am glad my insurance and Medicare covered most of this. I am also lucky to not have died or had permanent effects (other than a collection of snake oil). Your words of warning were what kept me from damaging my body and taking the seductive and expensive hope.

The 5000 year old mummified corpse recently unthawed and autopsied had Lyme Disease. Iceman Autopsy. Although he was old enough to be developing atherosclerosis, he died of trauma. He had significant health problems, but at least he wasn’t infected with something created in a lab. They’ve sequenced the entire genome of a person dead 5000 years, not that that doesn’t have value, but when are they going to get around to us?

And hot off the presses from MedScape:

March 29, 2012 — The prevalence of autism spectrum disorders (ASDs) has increased by 78% since 2002, a new report from the Centers for Disease Control and Prevention (CDC) shows. However, the exact reason for this increase is unclear.

Overall, the report’s data, derived from the Autism and Developmental Disabilities Monitoring (ADDM) surveillance network, show that in 2008, 1 in 88 children aged 8 years — 1 in 54 boys and 1 in 252 girls — had an ASD diagnosis by age 8, a significant jump from the current estimate of 1 in 110.

Their conclusion? It must be because of better diagnosis, reporting and access to services! Oh that’s a relief. We can all relax now. In the meantime, our little team continues to make slow progress, with no paid help to complete an IRB approved Family Study. I don’t think Dr. Snyderman and I ever thanked everyone publicly for taking the time and energy to participate in the Informal Family Study last year. We learned a lot. The problem was the extremely labor intensive data entry, incomplete data sets, and no controls, but it made it clear that there is much to be learned. We are working slowly to bring it to reality. We are all in different parts of the country, with different primary responsibilities, but we will get it done. Stay tuned.

Much aloha.

Today’s song: Sounds of Silence by Simon and Garfunkle

Link if embedded video is not streaming well:

The Sound of Silence – Madison Square Garden, NYC – 2009


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18 thoughts on “Integrity

  1. Hi Jamie,

    Just curious if you have heard of this new potential drug for chronic lyme disease? I have not seen any other info available beside the following link and a couple of reprints but would like to know what you think?
    FDA to Rule on Testing New Drug for Chronic Lyme
    Researchers led by Time for Lyme grantee, M. Karen Newell-Rogers, Ph.D, have submitted a pre-IND briefing document to the US Food and Drug Administration, a preliminary step toward developing proposals for clinical testing of a new drug that could one day end the suffering of those with chronic, or long-term Lyme disease.


    Jill J.

    • I have not heard anything about it, Jill. But I’m pretty jaded at this point. In any case, it is too far off to think about if they won’t even tell you what it is. Another somebody trying to make a billion dollars.

  2. Love the song choice Jamie. I sang this numerous times in my choir classes. Such great lyrics and harmony!

    Makes me wonder when will our sound of silence will finally be heard? We lost 2 more young patients from this illness within the last 2 weeks. Rest in Peace Emily and Victoria.

  3. “With statistics like the one presented in Ms. Begley’s report, it seems folly to expect “science” to save us now. The system is completely broken.”

    I’ve been saying the same thing for a while now Jamie. I don’t believe in “big science”. IMHO the patients are going to solve this disease. No one else.

  4. I dont understand what the letter writer means by “immune fatigued”, I am unaware that this term means, also how does that relate to antibiotics with or without lyme or bacteria present? would welcome clarification on this please? it seems like its important

  5. Since you are commenting about lyme, you might be interested to know that the very doctor who you recruited to work at the WPI clinic will be on the Dr. Phil show April 13th to talk about lyme. I don’t know any other details…

  6. Thanks for posting this. I’m glad I had the good sense to refuse iv antibiotics when Dr. M. Lerner said I “must have seronegative Lyme” because I didn’t show high EBV or CMV. Didn’t sound like good evidence-based medicine to me. I’m also skeptical of the Pharmasan/Neuroscience Labs My Lyme ID test but haven’t found much intelligent discussion about it.

    BTW, I might be another case for your study of ASD as my daughter is PDD and I have CFS.

  7. Hi Jamie. Great post!

    Been sick for 17 years with mecfs. Found out 2 yrs ago that I must have had hidden Lyme. Tests, even Igenex had been neg over the years. My doc agreed to do a doxy provocation and bang. Positive PCR. Finally rifampin ceftinir and gcmaf among other supps diet vita c and pacing are moving the illness. Don’t know which microbes I’m killing but die buggers die. Incidentally, my 22 yr old with no history of Lyme was just diagnosed after being on an abx and got severe roving arthritis. Pls pray for her. I wouldn’t wish this on my worst enemy much less than my own child.

  8. I wonder if anyone saw the science channel show “TED Talks” with Bonnie Bassler, and her discoveries on bacteria communications? I found it extraordinary. Seems they communicate inter and intra species. Anyway,

    Her team is wanting to discover how to block the chemical molecule that the bacteria use that tells them when a certain amount of them live in a host. Then they launch their attacks. That’s how I, someone who is so not scientific, can kinda sorta explain what I learned from her.

    Also, after 17 years of being dx’d with CFS/ME, I found out I had Lyme/Bart and Babesia. My life is returning, albeit slowly, since being on abx since December of 2010. Last fall, I could not afford some of them, and was astonished how quickly I regressed into a bed/couch bound state again, including symptoms I had had that had been long gone, that I had even forgotten about (and that is a testament to how much better I am). It scared me to death I would not come back out of it again. But I did, a few weeks after (ok, more like a month+) re-starting on them. It was proof to me that in my case, I will stick with the regiment for the interim. I hate it, but the alternative is much much MUCH worse. I’d love to get and/or build a royal rife or similar electromagnetic machine, and get off the abx, and maybe concentrate on the MuLV connection, but that’s on the horizon still.

    Given all of that, I so agree with you, Jamie, about how this can be a killer for some, and harmful to others, and pray we all get better research for treatment in the near future, where we can all benefit and not have to take the risks of being on abx for long term. I also know there are so many LLMD’s that are predators, and am so very thankful mine is not. I got lucky, and thank God every day. I know so many have fallen prey to the bad ones. :(

  9. “They’ve sequenced the entire genome of a person dead 5000 years, not that that doesn’t have value, but when are they going to get around to us?”
    Wayne State Researcher Seeks To Link Genome Instability, Chronic Fatigue

    genomic testing to look for chromosomal aberrations or genomic instability
    culture patients’ blood and perform SKY analysis, which
    paints each chromosome with a unique color to identify random genome aberrations
    More at
    A video on spectral karyotyping (SKY analysis) on Youtube:

  10. I personally know many people with Lyme who have benefited tremendously from longterm I.V. antibiotics. It does not help everyone, but that does not mean we should count it out completely. Also, my experience with Lyme literate doctors is not at all what you describe. I am sorry you have had bad experiences, but my experience is that most Lyme doctors, especially in the south, sacrifice and risk a great deal to treat their patients. They are harrassed by medical boards and insurance companies and in some cases have lost their licenses trying to help people that otherwise would get no treatment at all. I thank god every day for my LLMD. He charges me very little and without, I am sure I would be unable to work and on disability by now.

    • Thank you for writing, Jennifer. This is a very difficult issue, and obviously one I am thinking about, reconsidering, all the time, now that I am treating ME/CFS and other neuroimmune illnesses. And the same thing comes up with ASD and PANDAS, persistent bacterial infections that can’t be eliminated in the way doctors usually try to do things when it comes to microorganisms, kill, kill, kill, even if it might kill the patient.

      We need to define what you mean by long-term. Most importantly, in my opinion, how did these people respond to their initial exposure to antibiotics? Since we have no way to test, clinical judgement is required, and there is simply too little of that to go around. There are some sweet, caring physicians out there, trying to help, but they have been fed, and are continuing to be fed, erroneous information by ILADS, though I have seen some small signs of change in certain individuals recently, finally acknowledging that there is an underlying immune problem (most that land on their doorsteps I suspect) that makes what they do not work so well. Also that there might be some overlap with ME/CFS, since the patients are hard to tell apart, i.e. clinically indistinguishable.

      They get addicted to the hits they do get and have a way of ignoring follow-up on the ones they have harmed. I am not talking about your doctor of course, but too many. I fully acknowledge that my sample is biased towards non-responders, but I hear some really crazy things that doctors say to patients. You have seronegative Lyme and need a PICC line or a port, because of where you live. These are very dangerous, invasive things to do, especially to a person with a dysfunctional immune system. My daughter got leukocytoclastic vasculitis from a PICC line. That was her body telling us it didn’t want it. Drugs are always a double edged sword, but antibiotics more so than most, at least used long term and in combination. And parenterally administered, they come with another whole, very serious set of problems.

      From my point of view, as a physician who has to live with the good and the bad outcomes, because I don’t count on the people who get worse going away, I believe that in most cases, I can get to the same place, or better, with chronic Lyme patients without long-term antibiotics. Time will tell. It was certainly true for us, and my daughter was an antibiotic responder, until she wasn’t. And yes, I am prescribing some antibiotics. If I did have a patient have a big time response to antibiotics, which has not happened yet, I would consider continuing. However, I would never continue in the face of a persistent herx. I think that’s lunacy.

      All of this said, I just took a history of a child that is coming to see me that may very well require long term antibiotics. That would serve me right:), wouldn’t it?

      Warm wishes.

  11. Wow – I have just finished reading a presentation by ILADS Dr. H. of Hudson Valley, who is one of the first doctors to have treated “LYME” disease. Searching for attributions, I came upon J’s letter admonishing ILADS.
    I was quite taken aback by much of what was stated, since in the ten or more years I have been researching, I’d never come upon a rational argument against ILADS – although I had come upon hundreds of rational arguments against the IDSA. Jamie you make some very good points, but maybe are throwing the baby out with the bathwater?
    I am sorry to hear that there are so many ill-informed LLMD’s out there. I really had no idea. But I think there is a case to be made for the fact that there is some open mindedness among the ILADS community and particularly to remember that in addition to ILADS doctors embracing multiple modalities and not just shoving antibiotics at their patients ad nauseam, ILADS doctors are pioneering the understanding that Bb is not the only player in this illness. Actually these doctors, who actually see patients -are shifting the paradigm – of “Lyme disease” away from the non-nonsensical “single entity/illness” towards embracing the fact that we are dealing with multiple pathogens. And also exploring the pathonogenic communities “communicating” to form complex communities, making treatment sooo difficult. Kind of weird to talk about microbes and protazoa this way… but…further to your ideas about immune disorder – it is pretty clear from the work of Shoemaker that “bugs” damage our immune systems, and now from the work of epigenetics, there is evidence that
    “events” can “trigger” certain genes to respond. At the ILADS 2011 (I am not a doctor, nor am I a scientist, just a volunteer attendee) there was MUCH talk about the changing paradigm as regards the above incorporations, which might include HLA typing, and which might aid in determining or gaging (albiet, at this point in time there is no “hard” science) patient outcomes. That being said, I applaud Dr. Jamie’s honesty and much of her opinion -though differing in her blanket condemnation of ILADS doctors – most of whom I truly believe, are working very hard to help some of the most complicated, confused, brain fogged, in pain, hopeless, depressed, fatigued…well you know how long the list is…patients out there.
    I met the young woman who was in the movie “Under Our Skin” at the aforementioned ILADS conference and she is a living testament to one of these doctors. She volunteered to be the patient in his presentation of appropriate physical exam – (Dr. J. even though you are angry, please tune in to check out the video of his physical at the ILADS website -2011) and his knowledge and breadth of understanding of all the subtlties that come into play with the patient suspected of having a tick borne illness was amazing. And the young woman – Mandy (who did take many anti-biotics long term) was healthy and beaming.
    Also, having lived (and been bitten) in Dr. H’s neck of the woods, I can attest to the number of people he has helped.
    Of interest also: Knowlegable professionals no longer think “Lyme” or even Borreleia Burgdorferi. Dr. H has coined a new term, I cannot remember it. All refer to “tick borne illnesses” are aware of the complexities inherent in dealing with multiple pathogens.
    And in my group (on the many sites I “talk” on) of about 100 sufferers, we have reported only ONE greedy incompetent ILADS doctor. The ones we see do not want their patients on abx forever, and are coming around to accepting chronicity. Even Dr. Burasscanos guidelines emphasize nutrition, exercise, good diet, gut health, among other body strengthening matters. All that I have read and spoken to and listened to acknowledge the immune damage that occurs from the infection(S). Finally as for data; you say Fallon is the only one who has studies! And yet you appreciate the situation the medical industrial complex poses! Fallon got/gets MONEY because Lyme patients fund raised to get that center established at Columbia. So he has the machinery in place to write those grants and he can hire people to ENTER THAT DATA! You yourself admit you cannot enter the data. What have we to go on but anecdote from physicians who are busy treating patients?
    And with research hospitals that are ever more compromised by corporate money? The other guys who get the money for studies….DO NOT TREAT PATIENTS and all have conflicts of interest…oh it is a fine mess indeed. Meanwhile as doctor’s spat, patients are killing themselves. Sigh.
    BTW my son, inadequately treated, has developed CFS. We are on a third round of anti-biotics, with a doctor who has had the disease herself. she is not doctrinaire at all, but is helping us by listening to my ideas, sharing information and coming to good clinical decisions that are helping him.
    I bel. that it was ILADS docs who first started to suspect the role of neurotoxins in refractory pts. Many patients I know who have gotten better have used a lot of the things you have mentioned in addition to the meds. Anyway, my son is taking glutathione (liposomal) NT Factor, and many other suports. I plan to use some of the herbs that Sapi has researched (ok it’s only in vitro – but there again, where’s the money to do better?) in the future. I might also mention that my son, who has probably had this all his life (he is 14) only RECENTLY developed a Bartonella “rash” on his back. That’s how insidious these beasites are! And of course he tested neg. at 3 labs for bart, but CDC + at four – but I do go on.
    What are we to do? Protazoa, mycoplasmas, nemetodes, spirochetes. 16 y/o daughter with ANA and SED way out of wack. Me, they tell me it’s Lupus (I have no symptoms.) My husband is spaced out and his sleep is awful. The cat limps. Yes, we were all bitten, not once but many times. Our old friend’s doctor back in Hudson River country doesn’t bother to give him meds anymore. When he flares she puts him in hospital for the weekend and he gets an IV. Then goes back to work and feels just fine. For a while.
    Well in the words of the herbalist most famous for developing a fairly successful Lyme Protocol: we have to strengthen our immune systems, support collagen, reduce inflammation, and make peace with the spirochetes. I doubt, personally, that one can rid the body entirely of a spirochete– but I am forever vigilant about what might lie in the future for me and my whole family if we aren’t very very careful.
    Oh, and doctor – your info on the neuro feedback, oxygen etc. really helped me, because I find your writing and experiences quite valuable. MBritton

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