Lyme Disease: Politics, Old Boys and Misery

  – by Dave Cottrell – 

I am a Lyme Disease sufferer.  I was a very healthy man at almost 48, an outdoorsman, very active, and literally able to out walk and out work most men half my age.  I worked long days and could still run by the end of the day.  When I was first being checked out for this, my doctor said that I was healthier than most twenty year olds.

English: This photograph depicts a white-foote...

English: This photograph depicts a white-footed mouse, Peromyscus leucopus, which is a wild rodent reservoir host of ticks, which are known to carry the bacteria, Borrelia burgdorferi, responsible for Lyme disease. During their larval stage, Ixodidae, or “hard ticks” feed on small mammals, particularly the white-footed mouse, which serves as the primary reservoir for B. burgdorferi. (Photo credit: Wikipedia)

Then, suddenly, in November of 2007, I got sick.  I felt like I had a bad flu, and just pushed through it, dragging myself out of bed and heading off to work, but when it lasted longer than three weeks, I went to see the doctor.  I say “the doctor,” because that is how healthy I was.  It had been so long since I saw a doctor that I didn’t actually have a doctor, and had to take whomever I could get.

These black-legged ticks, Ixodes scapularis, a...

These black-legged ticks, Ixodes scapularis, are found on a wide range of hosts including mammals, birds and reptiles. Black-legged ticks, I. scapularis are known to transmit Lyme disease, Borrelia burgdorferi, to humans and animals during feeding, when they insert their mouth parts into the skin of a host, and slowly take in the nutrient-rich host blood. (Photo credit: Wikipedia)

The doctor checked me out, took my blood pressure, heart rate, etc., looked at my throat, in my ears, eyes, nose, etc., asked the standard questions, then proclaimed that I had a “virus, a long lasting virus, one that could last more than two months.”  When I asked what kind of virus it was, he could not give a name, but simply said it was “a bad one.”

Just to be on the safe side, the doctor prescribed Amoxycillin for 5 days, “in case there was any secondary bacterial infection.”  From what I know now, that was one of the worst possible things he could have done.  Had he prescribed the antibiotics for three to four weeks back then, I may well have been cured, and would not be writing this article, right now.

As I have since discovered, giving a short run of antibiotics to someone who has been infected with the Lyme bacteria, officially known as Borrelia burgdorferi (Bb), one of only a very few known spirochete or spiral shaped bacteria, is counterproductive and can make the disease worse.  Attacking it for only a few days with antibiotics, to put it in layman’s terms, “just makes them mad.”  The Lyme spirochete is a very unique bacteria that needs to be attacked vigorously for a period of three to six weeks, EARLY in the infection.  This means that early detection is critically important.

Unfortunately, very few doctors recognize the symptoms of Lyme disease, which are many, and those doctors who do know a bit about the disease have been educated to believe that only those who display the unique “bulls-eye” rash are infected.  This is simply untrue and old science.  The reality is that the true numbers might be less than 15%, and that does not include those who do have the rash hidden under hair.

Because of the lack of education among doctors, the fact that Lyme displays many symptoms similar to other diseases, and the very UNSCIENTIFIC IDSA standards, most people who have Lyme disease are not diagnosed early, misdiagnosed completely, and finally, denied proper treatment if and when they finally are diagnosed.

In 2006, the Connecticut AG set out to prove that the IDSA standards for diagnosis, treatment and insurance coverage were written in conflict of interest by those who had a vested interest in keeping things the way they are.  He proved his case back in 2008 and the standards were ordered to be rewritten.  Yet they still do not rewrite, and virtually ALL the western Colleges of Physicians and Surgeons are holding to these FATALLY flawed guidelines and ATTACKING and often removing the licenses of any doctors so foolish to treat someone with long term Lyme Disease (like I have), a disease that has been PROVEN to be curable in thousands of cases, already.  SO WHAT if there are no solid clinical studies?  When thousands are cured, not only does it show that it CAN be cured, but also that the clinical studies that HAVE been done are flawed.  (and easily proven so – the one that is presently cited DID NOT FOLLOW the protocols shown to work in thousands of cases, but instead followed IDSA guidelines.)

The result of these guidelines being followed is a lot of very sick people who could be cured, or at least, given a very much better quality of life, using carefully administered and monitored antibiotics.  The Colleges instruct their doctors to tell their patients how dangerous long term treatment with antibiotics is, yet these same antibiotics are readily prescribed for life to people who suffer from certain cosmetic skin problems.  The Colleges further instruct their doctors to tell people that even though tests are positive for Lyme and various co-infections long after they have had a short run of antibiotics, they really don’t still have the disease, but that there are “several, very mysterious long term after effects caused by certain diseases that they don’t understand…”  Several names for these “after effects” include “diseases” such as Chronic Fatigue Syndrome, Fybromyalgia, Polymyalgia Rheumatica, and others.

(It is rather enlightening to note that while doctors do not know what causes these aforementioned “diseases,” they quickly dismiss what is known as Long Term Lyme as a catch all name for diseases like Chronic Fatigue Syndrome, Fybromyalgia, Polymyalgia Rheumatica, etc.  However, they take great offense to anyone who suggests that perhaps THESE “diseases” are the actual catch all names.)

The reason that Lyme is so difficult to deal with, compared to most bacterial infections, goes back to two things – its shape and its adaptable protein coating.  It is a spirochete, a corkscrew-shaped organism that can burrow through the walls of blood vessels and into surrounding muscle and organs.  Once there, it forms a dormant cyst, that is virtually impervious to any antibiotic thrown at it.  Given the right conditions, these cysts will eventually become active, again, and reenter the blood stream to reproduce.

As with any bacteria that is left untreated in the blood, if the body’s own immune system is not able to remove them, they will reproduce until the blood is overloaded.  This makes a sick person very sick, and without treatment, can kill its victim.  However, it is also unhealthy for the bacteria, as the overload creates conditions that are too competitive and even toxic to them.  In the case of Bb, when the blood begins to overload, many of the bacteria burrow out of the blood vessels and into surround tissue and organs, including the brain, heart, kidneys, etc., and also into joints, the cause of what is known as “Lyme arthritis.”

This process can happen again and again, depending on how long the patient goes without proper treatment.  The results are devastating, as I can attest to, and can cause severe health issues including some seventy plus symptoms, including severe neurological disorders, like pain, brain fog, depression, terrible fatigue, balance problems and more.   Critical heart problems can develop.  In studies done by Dr. Pat McGeer of the University of British Columbia, one of the top 100 neuroscientists in the world, who has studied Alzheimers for decades, he has found the brains of several deceased individuals who supposedly died of Alzheimers to be filled with Bb spirochetes and cysts.  There is NO question that carefully administered antibiotics would have been beneficial to those individuals.

Once treatment does begin for an individual who is able to find treatment (an increasingly rare occurrence), the loading process must be reversed.  It is simply not possible to cure the disease with the standard protocol of antibiotics, since each time the bacteria in the blood stream are killed off by the antibiotics, a previous “layer” of cysts activates and reenters the bloodstream.  Unless there are antibiotics in the blood, the bacteria will flourish, and the process continues to degrade for the sufferer.  The antibiotics must be administered until there are no further symptoms.  After the antibiotic treatment is terminated, the patient must be monitored until enough time has passed to be sure there is no reoccurrence of the disease.

While there are claimed to be several tests (NOT the IDSA standard tests, which are totally useless) that claim to be able to accurately test for the presence of Bb in the bloodstream, there is NO test for Bb in the cyst form.  According to leading experts in the disease, and according to the acceptable standards for diagnosis given by the British Columbia Centre for Disease Control, the only way to diagnose and monitor Lyme disease is by the symptoms.

To date, the Colleges of Physicians and Surgeons continue to deny the vast amount of modern and excellent science available on Lyme disease and co-infections commonly carried by the presently known vectors such as the black-legged deer tick and the western deer tick.  Much the same is happening in most countries in western Europe.  Many people are very sick and getting sicker.  There are children who will never enjoy a decent quality of life, and who may not even reach adulthood.  Even in this very small area where I happen to live, I know of two such children, both of whom had positive, visible evidence of Lyme disease (one had the rash, which was misdiagnosed, and one still had the tick in her scalp, which tested positive for Bb, after being discovered buried under her skin possibly months after infecting).  Neither of these children is able to get treatment for Lyme disease, even though they have it, even though it is crippling and even though there are thousands of people who HAVE been successfully treated with a long course of antibiotics.

The Colleges simply call all the evidence “anecdotal” and therefore unscientific.  The only clinical test which they have carried out, which they claim proves that long term Lyme cannot be effectively treated with antibiotics, did not follow the protocols that have been shown to work in the field, but instead followed IDSA protocols, treating for no longer than 6 weeks.  In fact, they missed or ignored evidence of positive results from their own study when they observed that some of the people on the antibiotics got sicker  while those who were on the placebo did not change.  Had they taken a closer look at the anecdotal evidence, and had they read their own university science manuals a little more carefully, they would have discovered something called the “Herxheimer reaction,” something that is VERY common when treating a bacterial infection with antibiotics.  It is caused by the massive die-off of bacteria, and manifests itself with flu-like symptoms, including some or all of the following:  headache, chills, diarrhea, terrible fatigue, upset stomach.

Why is this such a problem?  Why do the Colleges continue to deny this problem exists, refuse to question their protocols, ignore good science by reputable and even acclaimed scientists, prosecute good doctors who try to abide by their oath and help people, and ignore an order from a high court?  It is always interesting to follow the money.  Where is the money?  Conspiracy theories make interesting movies, but the bottom line is, that for something as massive as this total denial of service to occur, there has to be a massive amount of money involved and and massive corruption involved, even at the highest level, including provincial, state and national political levels.

It seems that the AG of Connecticut was on the right path.  He proved in a court of law that the IDSA standards, which virtually all western countries follow, were written by people with vested interests in the protocols used for testing for Lyme disease, treating long term arthritis symptoms caused by the disease, and insurance companies whose policies only pay during an active disease, and not for chronic symptoms.  The courts ordered the standards rewritten in 2008.  That still has not happened.  Why not?  The only way for any organization to so blatantly ignore such a court order is for politics and the “Old Boys Club” to be at work.  Some state legislatures in the USA have been passing “stop gap” legislation making it illegal for doctors who treat Lyme disease to be prosecuted by their College.  But until this whole issued is settled, and the politicians and Old Boys develop a conscience, the misery continues…

Enhanced by Zemanta

9 thoughts on “Lyme Disease: Politics, Old Boys and Misery

  1. I have had Lyme disease for 26yrs-originally diagnosed as ME and in all these years I cannot believe the disbelief,and at times downright rudeness by the medical profession. I have at times prayed to die it was so awful and all they can say is ‘it is all in your mind’. They need sectioning!

  2. Yes, it is absolutely maddening at times. What also astonished me is when my doctors simply gave up. I might have died, if I had not met a Lyme literate naturopath who is licensed to prescribe antibiotics.

  3. This is a well-written account of the situation, Dave.

    Lyme victims desperately need scientifically valid evidence that long-term treatment with antibiotics is effective enough to justify this approach despite the health risks that it involves. Dave, you write that “thousands” of people have been cured or helped by long-term antibiotic treatment, but what we really need are names and dates for these success stories, otherwise when Lyme deniers criticize such statements as anecdotal there is no way we can argue with them.

    Without medical evidence that refutes the IDSA position, campaigning is doomed to fail in the USA and in Europe (where the IDSA position has been universally adopted).

    Even where there IS published, peer-reviewed medical evidence available that indicates that the ISDA position is seriously flawed, the IDSA camp has medical experts and professionals ready to fine-comb the studies, find and criticize weaknesses, and declare the studies scientifically invalid. The researchers whose studies are attacked in this way seem reluctant to discuss the matter in a public forum. A conspiracy theorist might speculate that these researchers are subjected to covert pressure. But whether such sinister coercion is taking place or not, it is easy to see that researchers in a highly controversial area whose credibility and careers are on the line might prefer to keep a low profile in the face of strong public criticism from well-qualified peers.

    A good example of this type of aggressive criticism is the controversy that followed the publication in 2012 of the Embers et al study that showed persistence of Lyme borreliosis symptoms in rhesus macaque monkeys despite aggressive antibiotic treatment. The Embers article is here:
    and the Wormser et al criticism is here:
    Critiques of published research results are a necessary part of the advancement of knowledge, but one gets the feeling that, in the case of the Embers study and in others, biased ideologies and vested interests are at play. The fact that Embers et al waited approximately ten years before publishing their research results has in my view not yet been adequately explained. Willy Burgdorfer, the researcher who first identified the Borrelia bacteria, recently appealed for research whose results are not known in advance.

    So, let’s gather hard evidence to support our criticism of the IDSA’s position on Lyme borreliosis, and let’s make sure that our evidence is valid. Otherwise we will continue to be accused of only having anecdotal evidence, and lives will continue to be shattered and cut short when it seems as though many could be cured. We’ve got work to do.

    • Hi Martin. Thank you for your kind comments and an excellent reply.

      I am aware of the Emsers v Wormser debate, and appreciate that you brought that up.

      Regarding the need for names, you are absolutely correct. We desperately need this to add weight to the demand for properly designed and scientific clinical studies of persistent Lyme disease and its treatment.

      The only present clinical study that is cited by those who claim that either there is no such thing as persistent Lyme disease or that it cannot be cured is a flawed study. It was designed following IDSA protocols for treatment of Lyme disease and was therefore designed to fail from the outset.

      Here is the dilemma: People are afraid to come forward. In every, single case where I have found someone who has publicly come forward to share their success story, the doctor is either no longer practicing medicine, or no longer taking patients with Lyme disease.

      At least, this has been my experience here in Canada. I am told it is similar in the USA and Europe.

      As soon as the College of Physicians and Surgeons finds out about a doctor treating persistent Lyme disease with antibiotic therapy in any jurisdiction, they vigorously pressure the physician to cease from such treatments, and in some cases, if they are not successful, prosecute such doctors through the licensing college.

      Until this changes, it is very difficult to obtain success stories from people who are willing to have their names (and very necessarily the names of their physicians) published.

      The last thing any of these people want is to end a doctor’s ability to successfully treat others who have been as desperate as they have.

  4. I was diagnosed with Lyme, following at tick bite in 2005. Got pregnant in 2006, suffered severe fatigue during my first trimester, then after I had my child, the chronic pain set in. Was diagnosed with Fibromyalgia in 2006 and told that chronic Lyme does not exist. I still get flare-ups. I got a new rheumy and she did 2 blood tests for Lyme. She said that I test positive for Lyme but have no active bands. My daughter was born with Hypotonia, and I have always wondered if it was Lyme related.

  5. Hi Debby. I am not sure where in the world you live, but you should definitely see a LLMP (Lyme Literate Medical Practitioner.) Most MDs want to help you, but most also know very little about Lyme disease, especially in chronic form, and are told it doesn’t exist or cannot be treated. Furthermore, there is evidence to suggest that your daughter’s Hypotonia could be related. If you need help finding an LLMP, message me through our contact page. I have a list of world wide professionals that I cannot openly publish due to privacy requests. They are happy to help this way.

  6. Pingback: New Borrelia Bacterium Isolated | The Lyme FilesThe Lyme Files

  7. I was diagnosed on 4-11-14 and started a 3 week course of Doxycycline 100 MG two times a day. I got my prescription on Monday 4-14-14 and today is Day 11 on the medication. I have good days/bad days and I hope after 3 weeks I will see more good days. I was probably bitten about a month or so before the diagnosis. I just happen to take a picture of my bite and it was picture perfect for a tick bite. I showed my doctor my arm and then showed her the picture and I said I thought it was a spider bite or a tick possibly and sure enough….I TESTED POSITIVE FOR LYME DISEASE. It is insane how much I suffer because of this; Headaches, fevers, chills, severe joint pain, extreme fatigue. I don’t know if my right eye twitching quite a lot is because of this but it never did this crazy twitching before. I can’t plan ahead because I have to wait and see how I feel. I am sick of people assuming I was out partying all night because I look hungover. I just want the fun-loving energetic me back. I go back to my doctor on May 9th, what should I ask then? If 3 weeks of antibiotics are done and I still feel horrible, then what?

    It seems I get 2 days of somewhat normal and then pay dearly with a bad day. I want that to end ASAP.

    Thanks for reading.

  8. Terrific article–you nailed it on all counts. I had Lyme for 20 years without knowing it. And yes, I was sick, and no, the many doctors never even considered Lyme. Good thing I got bitten again and developed a bulls eye rash. One visit to a shockingly glib internist after the second infection sent me running, thank goodness, to a Lyme m.d. The main reason why I am commenting here is because so little is said about the MONEY angle, the vested interest for the deniers. It is indeed the only explanation for such illogical denial on the part of the medical establishment. Thanks for the article. (And I hope you are feeling well; I’ve been on antibiotics for five years since the second infection, and am mostly feeling great now.)

Leave a Reply