Remembering Tuskegee - The More Things Change the More they Stay the Same

by Dawn Irons, Editor

For several years now I have heard many in the Lyme disease community make comparisons of our plight to that of the Tuskegee Experiment. I only vaguely knew what that was…some medical study related to Syphilis.

A few years ago I was horrified and humiliated when I took my lab papers to the lab for blood work and I noticed that the doctor had marked a full panel of testing for Syphilis! I was appalled! I had been in a monogamous marriage for 12 years at that point. I knew it was not even possible for me to have that disease, but I sure wondered why my doctor wanted to test me for it!!

I remember going home and doing some research on the symptoms of Syphilis. That was even more shocking! The symptoms were identical to that which I was seeking a doctor for treatment!! I was beside myself!! I went through all my medical records looking at the past labs that had been ordered. There buried my 3 in file of tests and results was a test for Lyme disease that was positive. I remember the doctor telling me that it had to be a false positive because “we don’t have Lyme in Texas.”

That is when I began researching Lyme disease. To my surprise, the symptoms were almost indistinguishable from Syphilis. The similarities were striking, right down to the fact that both are bacterial diseases caused by spirochetes. So when I heard someone pop off with the comment that Lymies were nothing more than the modern day Tuskegee Experiment, I thought I would try to figure out more about the original Tuskegee Experiment.

For those with that same curiosity, let me fill you in on the details of what I discovered. The Tuskegee Experiment was a government funded U.S. Department of Health study. On July 25, 1972, Jean Heller, an Associated Press writer splashed the headline across the world news which read: Syphilis Patients Died Untreated. She went on to report, “For 40 years, the U.S. Public Health Service has conducted a study in which human guinea pigs, not given proper treatment, have died of syphilis and its side effects. The study was conducted to determine from autopsies what the disease does to the human body."

The Tuskegee Institute began this study in 1932 by enrolling 400 African-American men who were infected with Syphilis. The men were never told what was making them ill. The CDC just told them they were being treated for “bad blood”. For their participation in the study, the men were given free medical exams, free meals and free burial insurance.

When the study began, there was no proven medical treatment for Syphilis, but in 1947 Penicillin became the standard cure for the disease. Even then, no treatment option was offered to these men. The entire goal of the study was to see what Syphilis would do to the human body if left untreated. The long waited “prize” for the government scientists was to do an autopsy on one of the men from the study. They never had intention of treating or curing these men; only to watch them die a slow, painful and agonizing death—just to do an autopsy and see what carnage the disease had done.

In 1972 their jig was up when some public health workers leaked the story to the new and it became public. The NAACP filed a class action law suit and was awarded $9 million in a settlement that was divided among the study participants.

So with this information about the original experiment I began to understand, at least a little bit, some of the comparisons that were being made between Syphilis and Lyme patients and their medical treatments (or lack thereof!)

In 1973, a year after Tuskegee was exposed publicly; it seems the same scenario began to unfold again in a similar, but morphed fashion. Dr. Allen Steere, a CDC researcher arrived in Lyme, Connecticut investigating a strange clustering of unexplained illnesses in the children of that community. Thus began the timeline of what we now know as “Lyme disease”.

Now, let’s fast forward to 2006 when the Infectious Disease Society of America (IDSA) released the new treatment guidelines for Lyme disease that was tantamount to withholding treatment altogether save 2-4 weeks of antibiotics. If the symptoms do not clear in that time frame, the IDSA recommends no further treatment…and even goes as far as name calling doctors “rogue doctors” who treat by a different standard, those of the International Lyme and Associated Diseases Society (ILADS). Durland Fish, Ph.D., professor of epidemiology at Yale University School of Public Health, uses terms such as "crackpot," "wacko," "buffoon" and "fraud" when describing ILADS physicians.

Richard Blumenthal, the Attorney General of Connecticut has seen compelling proof that the IDSA improperly withheld certain studies that disagreed with their views when determining which studies to include as reference points to justify their new guidelines. It is no surprise to find out that Yale’s Dr. Durland Fish is fighting the subpoena issued by AG Blumenthal. Fish was reported as saying, “I don’t understand why they hate me so much,” referring to Lyme Literate doctors (LLMDs) and Lyme patients who prefer ILADS guidelines.

Dr. Joseph Jemsek, who was on trial last year and censured by the North Carolina Medical Board for treating with long term antibiotics, commented tongue-in-cheek about Fish’s comments when he said, “When someone asks "why does everyone hate me?", and they're more than 8 years old, the question becomes instantly rhetorical, as they certainly already know the answer.” What are the writers of the IDSA 2006 Treatment guideline trying to hide? Inquiring minds want to know! Could it possibly be they don’t want their claim that Chronic Lyme does not exist to be explored too deeply? Or worse, what if it can be shown that the IDSA doctors know of proper treatment for Lyme but choose to withhold it because they can continue to draw government grants to fund the research for a disease they claim is “easy to diagnose and easy to treat”. That sounds strangely similar to what the Tuskegee doctors did! With a little effort, they could be convicted by their own words!

In the Annals of Internal Medicine (1979 Jun;90(6):896-901.) Allen Steere writes about the chronic manifestations of Lyme disease. Later in years he is quoted as saying Chronic Lyme does not exist and if symptoms persist it is considered “Post Lyme Syndrome”.

Another Lyme guru from the IDSA camp is Dr. Gary Wormser. He recently released a study in the medical journal of Clinical Infectious Diseases (2007 Oct 15;45(8):1032-8.) where he concludes that, “a surprising number of patients experience a subsequent episode of Lyme disease after the first episode has resolved. Re-infection has been well-documented only after successfully treated early infection…”.

Again, inquiring minds want to know… if re-infection rates are “well documented,” how can they possibly be so sure that the original infection was “successfully treated?” Isn’t it possible that the infection just went dormant and later became active again (ie; a chronic infection) rather than simply being re-infected?

I suppose since “chronic Lyme does not exist” and yet this amazing amount of cases of ongoing infection after “adequate treatment” of 3 weeks on antibiotics is being well-documented it is best to cover their tracks by writing a journal article covering their steps and claiming that there is a large number of Lyme patients that are re-infected after their first case cleared up. How can they be so sure?

It seems wisdom would err on the side of caution and treatment given until the symptoms clear. Would we treat a cancer patient this way? If chemo did not cure the cancer the first time, would they dare say if the cancer re-appeared that it was “Post Cancer Syndrome” and refuse to treat the symptoms? Of course not!

I am not without hope, though! Remembering the Tuskegee Experiment and the families it affected, it was refreshing to see that in 1997 (then) President Bill Clinton made a formal apology on behalf of the American Government to the victims of the Tuskegee Experiment. Clinton said what the government had done was deeply, profoundly and morally wrong.

He went on to say, "To the survivors, to the wives and family members, the children and the grandchildren, I say what you know: No power on Earth can give you back the lives lost, the pain suffered, the years of internal torment and anguish. "What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say, on behalf of the American people: what the United States government did was shameful. And I am sorry."

I think it is just a matter of time before the reasons behind the Lyme controversy are as transparent as a crystal stream. I believe that people of integrity, like Richard Blumenthal, will lead the investigation and expose the medical heresy that has gone on too long. I believe that the conflicts of interests held by the doctors who propose these dangerous guidelines will be exposed…and those of us who have suffered, just as the people involved with Tuskegee, “the lives lost, the pain suffered, the years of internal torment and anguish.” I believe we will be vindicated. I believe we will get good medical treatment. I believe we will see complete healing.

As a wise man once said, “All that is necessary for the triumph of evil is that good men do nothing”. Take heart, my fellow Lymies. Good people such as Blumenthal are hearing our stories and looking under the surface. It is just a matter of time!!