“Who Will Be The Heroes of Lyme Disease, Who will be the Villains?”

“Who Will Be The Heroes of Lyme Disease, Who will be the Villains?”

by Tom Grier

To anyone who has experienced the misfortune of having their Lyme disease symptoms relapse after the recommended treatment; you soon realize the sad truth about our medical system: the patient is not the top priority. 


It may take a while but most Lyme patients eventually learn their doctors are controlled and manipulated by health management companies, insurance companies, clinic and hospital administrations, and a pecking order of peers that decides which doctors are  treating outside the “community standards”


In other words if you have a doctor that treats Lyme aggressively with antibiotics, and hundreds of desperate patients have flocked to that physician, and they respond to treatment where other doctors have failed; then that doctor is an outcast by his or her peers. Why? Because most doctors don’t like being told repeatedly that they are missing a diagnosis of a very common illness. 


This legal term community standards is a vague and undefinable quantity that basically says that doctors must treat their patients according to a recipe book. Improvising is not allowed. There is safety in numbers and if your doctor chooses to veer or improvise from the generally accepted medical standards (the recipe book) then your doctor is alone, unprotected and unsupported by angry medical peers who told dozens if not hundreds of  recovering Lyme patients that they didn’t have relapsing Lyme.


The problem with this is: What if the community standard is wrong?  Where do we get new recipes to treat patients and who determines their merit?


It becomes quite clear to anyone with Chronic Lyme Disease that there are two camps in the medical community concerning the persistence of active infection in Lyme patients after being treated for 2-4 weeks with antibiotics.

The first camp: started with the pioneers of Lyme Disease who in the beginning got everything wrong. (see blog # 1) These Lyme experts have maintained their position that two tiered testing is dependable and indisputable, they maintain that even in severe cases of late Lyme that a few weeks of antibiotics is adequate, and with the support of the ACP (the American College of Physicians) patients that relapse after antibiotic treatment should be referred to a psychiatrist for evaluation. The ACP Lyme disease training video for physicians is quite clear on this and uses actors to reenact scenarios where Lyme patients are dismissed as psychosomatics and misinformed.  

The other camp: looks at evidence like autopsies, pathology, stained tissue biopsies and bacterial cultures of blood, tissue, and spinal fluid. Using these methods of investigation they have determined that the medical sciences that they endorse have shown that antibiotics often fail to eradicate the infection, that autopsies have revealed the infection within the human brain and brain cells, and that Lyme disease serology tests are often negative when direct methods of testing show clear indication of active persistent infection.

Neither side accepts the other’s evidence. 


It is clear which side of the fence insurance companies are on. It is also clear that CDC employees holding patents on Lyme tests and vaccines and major educational institutions like Yale have opted for the excessively rigid IDSA Lyme Treatment Guidelines that relies on medical opinions that insurance companies love , and Lyme patients hate. In my opinion many major medical institutions that we once trusted for honesty and integrity, are now tainted by ever growing conflicts of interest that are spinning out of control. When you follow the money it appears the people that we have collectively entrusted our health to, have sold us out, and the power and influence they have with the CDC and Medical Institutions has crushed the voices and concerns of the suffering Lyme patients. 


If we are ever to make headway there has to be people on the inside that will come forward.
In the early 1990s there were two pediatric physicians in Duluth that were very uncomfortable with treating infants with Lyme especially congenital Lyme. In several instances it was clear that the doctors had told the parents of suffering children that the Lyme tests were negative. Months and sometimes years later parents found out that their children tested positive but the parents were told they tested negative. The families requested copies of the tests directly from the Wisconsin Lab that was considered the best lab in the country, and were shocked to find that they had been deceived. Quickly they learned that other families had similar experiences with these physicians and many made out of court settlements including getting IV medications for their infant children.

 Over the years I have heard of many such stories of charts being changed, tests being altered, and patients being lied to. I asked myself many times: Why don’t the people who know what is really going on like nurses, and lab people come forward and expose the truth? I suppose this is a common fantasy and day-dream among Lyme patients, and unfortunately it is unlikely people will risk their jobs to tell the truth. 


Over the years I have spoken with many Health Departments and have been puzzled why no Health Department has ever made a serious attempt to study Lyme disease. If just one single State Health Department designed a well thought out study that looked at brain autopsies of dementia patients, MS patients, and Lyme patients I believe we would have the evidence we need to put the issue of persistence and chronicity to rest. The consequence would be millions of dollars saved by the State paying for the disabled and patients in nursing homes. 

Whichever state takes point on this; that state will be recognized as a leader and as a hero to millions world-wide.

It is inevitable that such a study will happen. My home state of Minnesota could be the state that wins this race for truth if only they had vision, leadership and integrity from within.  But most of all the workers of our health department must reevaluate their commitment to Minnesotan’s health, and not to politics and tourism. I am sorry to say that today’s medical bureaucrats are either cowardly or severely ignorant of the epidemic of M.S. in this country and the connection it has to Borreliosis and have done little to get to the bottom of the MS epidemic! 

 The heroes of Lyme will be those who for too long have remained silent when they can come forward and expose those doctors who have put Lyme patients lives at risk by choosing to turn their backs on sick people and labeling them as post-lyme syndrome.

As for our Lyme experts that have gained fame and fortune from allowing Lyme patients to suffer without putting their own bad science to the test: These individuals must know by now that to gain these things at the expense of patient’s health and quality of life, that they have become villains and frauds and should be treated as such.

Perhaps this is why they refuse to see and accept the ample scientific medical evidence of persistent infection post-treatment. The so called Lyme-experts will not look at nor support pathology and autopsies that is better science than their stated opinions of non persistence? They refuse to support pathology and autopsy studies because it proves that they are the villains.

Maybe they are the ones who need psychiatrists for refusing to accept themselves as the bad guys. It is sad that many doctors become doctors because they like being heroes: How ironic that so many who would be heroes have become the villain. 

Tom Grier 


3 thoughts on ““Who Will Be The Heroes of Lyme Disease, Who will be the Villains?””

  1. Sorry this comes so late. Many of my articles are posted without my knowledge, but as long as they remain intact I am fine with that. I do accept phone calls and most LDSGs in the country can find me. Currently I lecture on our on-going MS brain autopsy pathology study. I attribute my recovery to roxrithromycin 300 mg TID plus Metronidizole 500 mg BID which are two drugs that enter the brain better than most antibiotics. I had to get roxrithromycin from a “People With AIDS” buying group in 1991 swince it was an unapproved medication in the USA. The Dallas Buyer’s Club was a very real story for me and I applaud the AIDS support system for taking a legal risk to help me.

    1. Hey Thomas thanks for replying to this. We appreicate it.. Just a note…you gave us permission to post your articles.. Remember you and Betty G and I trying to arrange that? Just didn’t want you to think we did it without your permission.

      ~Lisa Hilton

  2. Tom,
    It would be nice to meet you . As a person who is probably living with chronic Lyme, I would like to think there may be hope of recovery.
    If you are able to function now, to which treament do you attribute your recovery?

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