The TRUTH about Lyme Disease


Hello -

I see that the comments are closed - that's cool. I just wanted to thank those of you who engaged/were following, commenting, etc. At the time I got wrapped up in something I was researching and so didn't immediately follow up with some comments. Also, I was realizing that it is difficult and maybe not the best idea or maybe not the best medium or maybe not the best time for me---whatever the issues were---to do this kind of research/discovery/writing/sharing the way I was. The process wasn't beneficial so I probably won't resume online here although I do continue to research. I think one of the last comments made below was about CDC and disconcerting trends in medical publications/studies, which might be interesting to get back into some day... I've since uncovered add'l info.

And then about a week after my last post - BAM - I crashed. My treatment is a "ratcheting" process of pushing harder/increasing doses and sometimes I do too much too fast and pay the price. That completed my summer and then I spent the fall desperately trying to put in some work and a few other things only to crash again over the holidays. Has not been a fun year so far! But will be on the anti-malarial phase of treatment in the next month or so and that SHOULD be my final leg of this journey - we'll see.

So I wanted to let you all know I am alive... And continue to research and look for answers so that someday I can finish what I'm working on and maybe publish it somewhere, somehow. Thanks for your efforts - maybe I'll post a completed draft of something someday.



This is a continuation of a conversation in a previous thread on 6.12.16 that had NOTHING to do w/ sports OR KU, other than me wanting to put some information out there to help out the Jayhawk Nation ---

In response to the mass shooting in Orlando, news outlets were asking people to donate blood. I mentioned the following:

"Yet, the blood supply isn’t screened for borellia (lyme disease), bartonella, babesia (malaria), or many of the other VERY common diseases ticks and other vector insects carry. Lyme disease is six times more common than HIV/AIDS and is now an epidemic in this country with the estimated very low side of 300,000 new cases reported per year (revised in 2013 from 30,000/yr). However, inadequate diagnostics and antiquated education results in nearly 60-70% of cases going undiagnosed each year… the real numbers experts estimate are astonishing."

I’ll try to find more current statistics but here is a 6 yr-old PubMet abstract that states LD is 4 times more common than AIDS in the US. Since then, the CDC has revised its "new cases" by tenfold. You do the math:

Lyme Disease - fastest-spreading bacterial disease
These stats were revised in 2013 from 30,000+ new cases/year to over 300,000 new cases/year, which most lyme experts suggest is still probably 50% low. Some studies suggest it’s 40 times higher.

25% of cases are kids aged 5-14.

LD is the new HIV/AIDs

May was Lyme Disease Awareness Month.

CDC: In 2014, an estimated 44,073 people were diagnosed with HIV.

CDC: In this study, researchers estimated that 329,000 (range 296,000–376,000) cases of Lyme disease occur annually in the United States.

Here is an interesting article comparing the organized ignorance surrounding Lyme Disease with what we now know was ultimate institutional failure with the AIDs pandemic in the 80s. Astounding similarities in the LD coverup (if the AIDs info doesn’t interest you – skip down the page after the 2nd video clip);

"I don’t know how to make this plainer: Lyme disease is the AIDS of our time. We are, right now, where Randy Shilts was when he wrote And the Band Played On. Yet only 30 years later, the public still can’t see what’s right in front of them. Health Scares of the Week, from Ebola to West Nile to SARS to bird flu to swine flu come and go and thus far have affected few Americans;meanwhile, one in every 100 Americans each year contracts Lyme, and many of them develop multiple sclerosis-like conditions following prescribed treatment. Patients are desperate, many going bankrupt trying to find help for their disabling condition. They are met with silence. Sometimes even with laughs.

The CDC estimates that over 300,000 Americans are diagnosed with Lyme disease each year. The CDC unfortunately also insists that Lyme can be easily diagnosed and easily cured, permanently. So strange for a public health crisis of the sheer magnitude of Lyme disease, relatively little — $24 million per year — is invested in researching the disease pathology, diagnostic tests, and treatment."

I linked the HuffPo article for the HIV/LD comparison. It’s a personal perspective (shared by many "in the know") but it’s also historical. If you know much about either HIV or LD, there isn’t much mystery involved. You don’t have to "believe a blogger" – that’s why I included the other links, including links from your buddies at the CDC.

Most of the world learned about HIV/AIDS decades after gross negligence and denial killed millions of people. But we don’t have to wait until LD follows a similar and horrifying path to learn the truth. That’s the purpose of comparison and like many controversial issues, .gov is well behind the curve. There are a few reasons for that if anyone is interested.

We discussed why "LD isn't easy to cure":

Many people who treat immediately do well with treatment - until they don’t (because lyme is not curable and our bodies are dynamic).

Interestingly, they have found genetic mutations that give some people "immune" type responses to the Borrelia microbe. Anyone can test to find out. But how this manifests itself into actual immunity is not well understood.

LD is not curable but if caught early it is "treatable" in many—but not all cases. The qualifier is "caught early". The goal is to get immediate antibiotic treatment to kill what it can reach and control spreading and also to help your immune system to dominate the infection.

You might fall into the category of "caught early" and "treatable" If…

  • You’re lucky enough to know you’ve been infected (most people don’t ever see a tick, nymph ticks are the size of a poppy seed, and while the erythema migrans (bullets eye) rash is produced ONLY by Borrelia, only 40-50% of people produce it from being infected;
  • and immediately get yourself to a doctor educated enough to recognize what it is and know how to treat it and be confident enough to treat it (70% were unable to do so in one study);
  • and are adequately tested by a knowledgable MD with an IGeneX Western Blot (who ignores the CDC two-tiered testing methodology, which is intended to reduce false positives but because of the inaccurate tests it creates mostly false negatives);
  • and a knowledgeable MD can interpret the woefully inaccurate serology testing that relies on your Borrelia-weakened immune system producing enough antibodies to be detected;
  • and are lucky enough to be successfully treated with more than the recommended duration of antibiotics (most MDs are uneducated about how to treat it or if they know how, are too scared to treat it correctly).

But most people infected do not fall into that category. That’s why most LD experts are seeing an epidemic. The current LD diagnostics/testing misses most cases."

LD has historically been reported mostly in the NE and upper midwest (based on the flawed and outdated information reported by the CDC). I’ll post more tomorrow about the limitations of the reporting system.

Also, there is a difference between "established" and "reported" tick populations.

  • The warming climate (2014 was hottest yr on record, milder winters, and more moderate weather patterns in the north, fragmented forest) – Scientists of the Cary Institute of NY found as many as 80% of the ticks in fragmented forest patches were infected—thee highest rate scientists have seen.
  • Loss of biodiversity is an assumed catalyst in changing demographics for LD (tied to greater pathogen transmission and increased human risk);
  • Affected areas have seen a return of brushy and forested areas as small farms have gone out of operation;
  • Deer population has exploded in recent decades but their ticks aren’t the only carriers—but diseased ticks of field mice are the preferred vehicle (particularly of nymph ticks)
  • Migratory birds are common carriers – one CA study found LD spirochetes were detected in 57 of the 100 birds that carried ticks;
  • LD has been identified in other vector insects;
  • While the number of counties identified as having high incidence of LD in the NE increased more than 320% (hotbed in NJ is now in PA), LD is also spreading south and east of previously limited geographic areas; it’s now in half of all US counties:
  • LD is moving "westward" to places like ND for the first time – an study appearing in a journal from Oxford University Press and is creeping into Illinois and Indiana,
  • LD is expanding into CA – infected ticks have been found in 42 counties across the state;
  • Studies show it can be passed in utero from mother to infant;
  • Is in the blood supply
  • And studies show it can be sexually transmissible…

Quick fact sheet

ILADS (International Lyme and Associated Diseases Society) is the "other" lyme medical society and source since the IDSA has corrupted so much lyme education and advancement… most lyme specialists are members and I didn’t research these stats myself, but ILADS is wholly reputable.

  • Fewer than 50% of patients w/ LD recall a tick bite
  • Fewer than 50% of patients w/ LD recall seeing any rash
  • The 1st of the CDC’s recommended two-tiered testing misses 35-50% of cases
  • Up to 50% of ticks in lyme-endemic areas are infected w/ LD
  • 40% of LD patients end up w/ long-term health problems
  • Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed

What constitutes "epidemic", anyway?

I’m with ya. In fact, when I first started coming across that "label" toward LD I dug into what is considered epidemic.

The CDC’s online glossary states that outbreak can actually be used interchangeably with epidemic and that the former is used because it’s "less frightening".

A pandemic is an epidemic that occurs across several countries and affects a sizable portion of the population in each (although no definition of "sizable"). The last pandemic was in ‘68-’69 when Hong Kong flu killed nearly 34,000 Americans between Sept-March.

Here is another excerpt from the CDC:

"Epidemics occur when an agent and susceptible hosts are present in adequate numbers, and the agent can be effectively conveyed from a source to the susceptible hosts. More specifically, an epidemic may result from:

  • A recent increase in amount or virulence of the agent,
  • The recent introduction of the agent into a setting where it has not been before,
  • An enhanced mode of transmission so that more susceptible persons are exposed,
  • A change in the susceptibility of the host response to the agent, and/or
  • Factors that increase host exposure or involve introduction through new portals of entry.(47)"

The WHO uses the term "Disease Outbreak" but the descriptor fits:
"A disease outbreak is the occurrence of cases of disease in excess of what would normally be expected in a defined community, geographical area or season. An outbreak may occur in a restricted geographical area, or may extend over several countries. It may last for a few days or weeks, or for several years.

A single case of a communicable disease long absent from a population, or caused by an agent (e.g. bacterium or virus) not previously recognized in that community or area, or the emergence of a previously unknown disease, may also constitute an outbreak and should be reported and investigated."

I’m sold.


The following posts discuss five reasons the true numbers of new cases and existing cases are much higher than reported:

1. limitations of the CDC’s reporting system and the process by which cases are reported;
2. difficulty in getting properly diagnosed (as I described in the previous post), which includes reliance upon outdated etiology that prevents MDs from properly identifying early symptoms/ signs of infection and prevents them from testing people in the first place;
3. inadequate diagnostic tools and methodologies (which prevents people from being tested with the right test), high frequency of false negatives in recommended tests; and incorrect interpretation of tests (which prevents people from being properly diagnosed).
4. Inadequate, truncated and ineffective treatment
5. The players, the game