The Controversy Regarding Lyme Disease Needs To Stop

The Medical Community Needs To Come Together So People Can Receive Proper Diagnosis And Treatment

There Are More Carriers of Lyme Disease Than Just the Deer Tick

There is a tremendous misunderstanding regarding the vector (carrier) that transmits Lyme disease. First of all, the familiar tick vector called the deer tick (Ixodes dammini) and black-legged ticks (commonly called deer ticks) (Ixodes scapularis) are more prevalent and spreading wider than reported.  It is estimated that only a small percentage of people infected with Lyme disease are actually reported to the CDC (center for disease control).
Secondly, these ticks are not the only vector able to transmit Lyme disease (borrelia) and co-infections. Several other tick species such as the Lone Star ticks (Ammblyoma americanum), western black-legged ticks (Ixodes pacificus), and wood ticks or dog ticks (Dermacentor variabilis) can transmit it too. Unfortunately, this critical information is not being reported by health officials to the public and medical community. The widespread distribution of these tick vectors greatly increases the prevalence of Lyme disease well beyond that of official reports. The medical community and people need to know the potential danger of all tick bites, not only that from the deer tick.  Mosquitoes are being reported as carriers of Lyme disease, which begs the questions, what other biting insects are able to transmit it?

Host Animals

Ticks are carried by a number of different host animals, not simply deer. The hosts for adult ticks are numerous and include: dogs, coyote, fox, cats, cattle, rabbit, skunk, raccoon, rats, mice, squirrels, white-tailed deer, wild turkey, and humans. Nymphs get on many of these same animals as well as larger animals typical for adults. Ground nesting birds including bobwhite quail, pheasants, turkeys and chickens are also tick hosts. Forty-nine species of migrating birds have been found to carry ticks, transporting them large distances and contributing to the national spread of Lyme disease.

Also very potential vectors for Borrelia species include: chiggers, mosquitoes, biting flies and fleas. Cases of LD being contracted from infected pets are well documented; likely due to the pet bringing infected ticks into the home. Borrelia can also be transmitted in utero from an infected mother to a child during pregnancy. Congenital transmission can cause miscarriages, severe neurological disabilities, or other major system dysfunctions to the baby. Other modes of transmission probably exist that we are not aware of.  I am personally concerned that transmission may occur through blood transfusions without authorities knowing about it.  As of late, blood banks are considering screening for Lyme disease.  Something that should have happened many year ago.

Lyme Disease Is More Common Than We Think

The true number of Lyme disease cases is much higher than is being reported by health officials. It is estimated that the numbers are actually 15-20%  higher than what is reported.  Why are health officials under-reporting cases of Lyme disease? Most likely, the answer is because the medical community does not recognize and report most cases.  Which means people are suffering with a misdiagnosis or no diagnosis at all.  These misdiagnosed cases go unreported even though Lyme disease is a mandatory reportable disease.   Since health officials under-report Lyme disease,  physicians that read the official reports believe that the prevalence of Lyme is rare and place it low on their list of possibilities when faced with clinical cases that could be caused by Borrelia.

Wrong Diagnosis Leads To Wrong Treatment

Another critical point that needs to be highlighted is that Lyme ignorant physicians often administer medication that is contraindicated in patients with Lyme disease.   The therapy most often prescribed that is extremely contraindicated is the use of steroidal anti-inflammatories, such as prednisone (which is what happened to me on several occasions). Lyme patients suffer with many painful inflammatory symptoms. MDs, not knowing that the patient has Lyme disease, (for lack of education) think it is appropriate to treat these patients with steroids to reduce the pain and inflammation. Unfortunately, steroidal therapy is very detrimental  to Lyme patients because it suppresses the patient’s immune system causing it to tolerate the presence of Borrelia instead of attacking and killing it. This harmful treatment significantly diminishes the prognosis of Lyme patients; it prolongs the course of the disease and makes it more severe in the long run.

True Lyme Literate Medical Doctors (LLMD’S) are Few and Far Between

The plague of ignorance surrounding Lyme disease makes it very controversial within the medical community. Most MDs are uneducated about the complex nature of Lyme disease and are frequently irritated when confronted about it.  (I’ve experienced this with an Infectious Disease Doctor, which is the WORST doctor I have ever seen).  While it is hard to estimate just how many  Lyme knowledgeable MDs there are in this country, it is a well known fact that there are not enough of them.  You will find some LLMD’S who are not accepting added patients to their already overloaded patient count. Most LLMDs know about the disease because they have studied it independently. The MD’s formal training in medical school and from the established medical community regarding Lyme disease is almost non-exsistant.

LLMDs have been and continue to be harassed by the medical community, by health officials, by their peers and colleagues, by state medical boards, and by insurance companies for diagnosing and treating Lyme patients beyond the standards set by the establishment. Unfortunately, some of these LLMDs have discontinued treating Lyme patients due to the harassment. A few LLMDs have actually had their medical license revoked because they have treated Lyme patients beyond standards set by the medical community, or the ISDA (Infectious Disease Society of America). The 4 to 6 week time frame should be all it takes according to uneducated MD’s and the ISDA.

If Lyme patients are blessed enough to find an LLMD  (I thank God for mine!) and get the proper diagnosis and treatment, guess what? Many health insurance companies are declining to pay for the appropriate antibiotic treatment. Why? If it’s not the standard treatment established by the uneducated medical community, the insurance companies won’t pay. The standard treatment time frame for Lyme disease, which is considered to be a 4-6 week course of antibiotics, is too short for most Lyme cases.  A basic treatment for Chronic Lyme disease usually requires many months, or even years or even a lifetime of appropriate antibiotic therapy.

This ignorance should not exist. I have been able to educate myself about Lyme disease. There are plenty of good resources on the internet that are full of in-depth, scientific information from leading Lyme disease specialists available to all.   The medical establishment needs to connect the complex clinical picture of Lyme disease with the evidence already present in the scientific literature. I know they won’t consider anecdotal evidence which is very helpful in understanding Lyme disease clinically, but isn’t considered scientific.

Doctors need to listen carefully to their patients; the patient will usually tell them what’s wrong.  I’ve heard it said by one of the top treating LLMD’s in the country, if a patient complains of MIGRATING PAIN, this is a good indicator to look for Lyme disease.  Doctor’s must use their best clinical skills to rule out Lyme disease when dealing with a patient presenting complex symptoms suggestive of Lyme disease. They must educate themselves about Lyme disease. The CDCs criteria is outdated and insufficient for them to use to make clinical diagnosis.

Another Look at the Controversy

There is a controversy surrounding Lyme disease which has prevented many people from being diagnosed with the disease and from being treated properly for the disease. The essence of the controversy is persistence of infection versus autoimmunity.

One viewpoint is that Lyme disease is hard to catch and easy to cure. It’s proponents promote short-term antibiotic treatment regimens (a few weeks) that are most often not effective for those who have the disease. The patients often remain symptomatic after that course of treatment. When that happens with other diseases, patients are often given longer courses of antibiotics. However, those holding this viewpoint, including the IDSA (Infectious Diseases Society of America) and insurance companies, have proceeded to take strong actions to prevent Lyme patients from receiving any more antibiotics. Their claim is any remaining symptoms are “autoimmune” in nature, not persistent or chronic infection.

The other viewpoint is held by physicians who are treating Chronic Lyme patients. They recognize that scientific research shows that even after longer term treatment (more than the few weeks) with antibiotics, some of the Lyme bacteria can survive (persistent infection). They also recognize that although some symptoms can be the result of an autoimmune cascade, that cascade is driven by a small amount of bacteria that remain after treatment. These treating physicians have found that repeated courses of antibiotics and combinations of antibiotics (which attack in different ways) often help patients to become self sufficient and regain their health and functionality in society.

An argument used against long-term treatment is that prolonged antibiotic use develops resistant bacteria. That claim has not been proven. In fact, antibiotic resistance generally develops as a result of improper usage of the antibiotic–not taking enough, thus the admonition to patients to “take all of your antibiotics that are prescribed, do not stop taking them when you feel better.”

There is Still Hope

Some people that have been diagnosed with Lyme disease and have been given the right treatment for a the right time period can fully recover, showing no symptoms.  Others carry it and battle with it for the rest of their lives. There are others, however, who have been misdiagnosed and continue to live with the many dibillitating symptoms of Lyme disease.

Borrelia can be a deadly bacteria as it has the potential to invade most organs and tissue in our bodies.  As the word spreads about the complex nature of this disease, the hope is that more doctors will begin to learn about it, and will take the actions necessary to diagnose and fight this disease with their patients. It is critical that the public and the medical community are made aware of the true prevalence and dangers of this disease. Until this gap of ignorance is closed, many unfortunate individuals will suffer needlessly with Lyme disease.   But, as we are hearing more and more about Lyme disease on the news, talk shows (most recently, Dr. Phil) and seeing advertisments on the Jumbo Tron in NY and at the Daytona 500, awareness is coming to light.  Awareness is key in our fight for better understanding, better treatments and more doctors on board to help Lyme patients get the proper treatment and get well again.  There are many who are bringing awareness to this disease.  (My website is one of them).  Research is going on behind the scenes and with hope and prayer, the medical community is waking up to this serious and complicated disease.

22 Responses to Controversy

  1. I suggest adding a “google+” button for the blog!

  2. I really like your writing style, good info, appreciate it for posting :D . “God save me from my friends. I can protect myself from my enemies.” by Claude Louis Hector de Villars.

  3. Jennifer, your blog is very well written with a lot of good information for the public, I’m extremely impressed! I find too, especially in the last several years my faith has kept me going. It’s a very hard road to endure, but it’s always nice to know that us Lymies have each other to lean on. It’s a amazing to me the difference the community has made in just the last seven yrs of my treatment, compare to when I first went to my first llmd. I do feel we are getting somewhere has a whole. Good luck to you! I will post a link to your blog on my site, I think it can be very beneficial to others:) hugs to you!!

  4. Would enjoy constantly obtain up to date very good internet site!

  5. Controversy | Living With Chronic Lyme Disease I was suggested this blog by my cousin. I am not sure whether this post is written by him as no one else know such detailed about my problem. You’re incredible! Thanks! your article about Controversy | Living With Chronic Lyme DiseaseBest Regards Shane

    • I was just dosingaed with lyme disease. I went to the doctor 2 years ago complaining about severe joint pain and i was tested for lyme along with arthritis and all tests came back neg. I recently went to the doc because i could walk the pain in my ankles were so bad so i was tested again for lyme and got a pos. result. I was on doxy for 10 days but it caused me severe stomach problems so i had to switch to amoxicillin which ill be on for 10 days. I never thought i would have to deal with something so serious so young. It hurts just to lay down. And its so hard to get out of bed in the mourning for work and school because im so tired. This disease has nearly ruined my life and the medicine isnt seeming to do anything. I hope everyone who suspects any sign of lyme disease will go to there doc asap and get it checked out because this disease is way more serious then it sounds.

      • Hi Eveeza, I’m really sorry to hear that you have this very serious dibilitating disease at a young age. I believe I contracted it as a youth and it reared it’s ugly head after a serious car accident. You are so right about people not knowing how serious this disease can be, which is why I created this website. Are you seeing a LLMD? I hear ya and the garlic as it’s a natural antibiotic. I didn’t do well on doxy myself and have tried quick a few combinations to find what works and what I can tolerate.

        I really hope and pray that you can find the right treatment for you so you can go about life. Don’t give up and never lose hope!

        With Love & Light,

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  11. Not only is Lyme out of control and under-diagnosed, but there is a high incidence of co-infections involved with tick bites. My husband thought he had Lyme, got treated and did not get better. Turns out he had babesia and bartonella as well.

    • So true Daphne. I’m really sorry that your husband contracted the co-infections (the same ones I have) with the lyme, as it makes it much more difficult to treat. It’s so important to see a LLMD that treats the co-infections and not just lyme. I hope your husband is making progress with his treatment.

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