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Show 996: Mystery and Lyme Disease Misdiagnosis (Archive)

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Mystery and Lyme Disease Misdiagnosis (Archive)

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People who have had difficulty getting an accurate diagnosis of their ailments may feel that their doctors are not taking them seriously. Perhaps if they had MD degrees themselves, they imagine, the diagnostic process would be more productive.

A Medical Mystery

This is not always the case, however. Our guest, Neil Spector, MD, is a distinguished researcher and medical oncologist. But when he came down with troubling symptoms, the doctors he consulted told him he was suffering from stress. No one could figure out why his heart was racing and he had so little energy, but the diagnosis of “stress” followed him around. He had to become his own advocate.

Gone in a Heartbeat

Years later, his doctors discovered that his heart was barely functioning. It had been destroyed by Lyme disease that had been completely overlooked. He learned that unless he got an immediate heart transplant, he could be gone in a heartbeat.

What can we learn from Dr. Neil Spector’s successful struggle to overcome his Lyme disease misdiagnosis?

Detecting Lyme Disease Earlier:

Since listening to Dr. Spector’s description of the difficulty he had with the blood tests to detect the infection, there has been some progress on blood tests that can be used for early detection of Borrelia burgdorferi (Lyme disease) infection. A team from George Mason University has just announced its results.

A multi-university team has also developed a multi-antigen test that should be helpful for early diagnosis (Journal of Clinical Microbiology, Dec., 2015). But for any of these tests to be useful, a doctor needs to suspect Lyme disease and order the test.

This Week’s Guest:

Neil Spector, MD, is the Sandra P. Coates chair in breast cancer research and an associate professor of medicine as well as pharmacology and cancer biology at Duke University Medical Center. He co-directs the experimental therapeutics program for the Duke Cancer Institute, and is a Komen scholar. His book is  Gone in a Heartbeat: A Physician’s Search for True Healing.

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The podcast of this program will be available the Monday after the broadcast date. The show can be streamed online from this site and podcasts can be downloaded for free for four weeks after the date of broadcast. After that time has passed, digital downloads are available for $2.99. CDs may be purchased at any time after broadcast for $9.99

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.” .
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The gem I took away from this show is that tick borne microbes have lived in happy symbiosis with us for millenia. We only began becoming sick from them when our lifestyles became so distorted and unhealthy. These physicians each likely lived with the microorganism for years (by their own report) before becoming sick as a result of living the terribly (and ironically) unhealthy life of the modern physician. We have so much more control over our health than we like to admit. It is often easier to blame a health care system which is clearly not designed to bring even it’s own practitioners any form of “health,” than to take responsibility for our own health by ensuring that we receive basic healthful requisites such as adequate sleep, a balanced work life, and nutritional food. We would like instead to forego these basic requisites to health and subsequently demand that technology and the health care system fix our broken immune systems for us. I look forward to the day that a cultural overhaul addresses both our broken attitudes to health and our broken health care system.

8 yrs I lived with misdiagnosed Lyme and it has pretty much made my life horrible. I wish I knew what I know today 12 yrs ago. I hope
and pray that Dr. Richard Horowitz will change the way Lyme is diagnosed in the U.S..

I was a healthy and fit 57 year-old on July 29, 2003, when I found a tick on the outside of my right ankle, as I was changing my socks after work. Two days later I had excruciating neck pain that lasted a full day, but when I went to be checked at our HMO’s weekend urgent care, I heard, “You don’t have to worry about Lyme disease, because that tick’s too big.”

Over the next five days there developed a small red circular spot — it increased in size from a dime to a nickel to a quarter — on my ankle where the tick had been; then the inside of the red spot faded, leaving a pink circle surrounding a dot. We were about to leave for our annual two-week road trip to Illinois, Iowa and Wisconsin, to visit family. I called our HMO provider to seek advice on taking the trip: “You don’t have to worry. Even if you have a tick disease, two weeks without treatment won’t matter.”

In October, 2015 I finally was released from 12 years of severe chronic pain with Naloxone, but my body has been deteriorating steadily, at a glacial pace, and life has been stolen from us by medical mistakes and ignorance.

From the start, after we had to demand referral to a doctor that knew Lyme disease, my body never responded to the blood tests, because my F2 iGG subclass immune response does not allow any antibody production. The only proof I have that caused a look for the infection was a bright red, circular blotch that developed on my abdomen, 21 days after the tick was found, and my daughter and my brother had the presence of mind to photograph it.

I am 75 years old. I know that I will have months of hard bicycle work in my future. Thank you for the information.

Although I am sorry that Dr. Spector had this experience, this must not serve as a support for Chronic Lyme doctors and I, therefore, must add my voice. I had the opposite problem. I WAS diagnosed with Chronic Lyme by an LLMD, and within one month, he had projected that my entire lineage had Lyme Disease. I was treated with Doxycycline, and since that was not my problem, I started having extreme symptoms. I was in the emergency room three times in two weeks. I was told it was a Herx reaction by the LLMD. This was not true. I was getting worse because that is not what was wrong with me and I was not getting the correct treatment I needed, which I fear is what most people that have “Chronic” Lyme Disease are going through.

Most of these doctors diagnose based on symptoms, and have the freedom to judge very vague symptoms as Lyme. I also think that the other part of the problem is that with unspecified symptoms there are so many diagnoses possible, and finding out the true cause is hard.

However, I continued to research what could possibly be wrong with me and once I was on the correct medication and stopped the Doxy, I immediately started feeling better. So, yes, Dr. Spector, thank you for pointing out that you must be your own advocate and figure out what is causing your symptoms. It could be Lyme, but most likely is NOT “Chronic Lyme,” and if you are pumping yourself with antibiotics, you are only making things worse. It is my hope that I might save someone, anyone, from falling into the same trap that I did. It could save your life. Do your research.

my doctor refused to test me for lyme! My friend who is a doctor but not a medical one. Told me that had the symptoms. My friend has lyme. I found some doctors that specialize in lyme,
However, they did not take my insurance and was at least 2 1/2 hours away. I found a lyme dentist he was 6 hours away and did not take my insurance. I cannot find the link to send comments to me on this article.

i forgot to add that i because insurance does not pay , I cannot go to these doctors.
it is so sad that many doctors do not accept insurance or recognize lyme disease.

That was a great & most interesting show!! Thanks!! My third child, a girl who has a mosaic ring 22 chromosomal defect (she was no 31 to be diagnosed with this chromosomal defect known in the world population) got Lyme Disease in 1995. We live here in South Jersey which is a hot bed of the disease.

I’m not so sure she got the Lyme from a tick the first time around, since there was no evidence of a tick on the back of her leg where the bull’s eye rash occurred. We were out West when the first diagnosis came in. Thankfully, the doctor at the clinic knew that what was wrong with her, even though there were very few cases at that time frame out there. We knew there was something seriously wrong, as she was sleeping 14-16 hrs. a day, running a fever & just not feeling good, even though she couldn’t really tell us what was going on, as she was mentally like a 2-3 yr. old.

That summer she was on 3 mos. of oral meds, and then we did a month+ of IV antibiotics. The following June she was at the infectious disease doctor’s for a check-up & There she had a tick on her shoulder, and it is was Lyme disease again. We had a repeat performance of treatment. Both times she complained about the foot where the first bite was–that it ‘hurt,’ and the 2nd time she would have frequent stiff necks. Since she isn’t smart enough to be a’ hypochondriac’ & we could only go on exhibited symptoms. We knew she had long term-pain, etc. It was after the 2nd time that her sleep patterns drastically changed & she would sleep 2-3 hrs. & then be up 21 hrs. totally wired. We’ve talked to other ‘normal’ individuals about their Lyme symptoms & problems & so many have related the same thing.

Her 24/7 care has been a real challenge for us & the Lyme disease has really changed many things about her. She had it one more time within the last 5 yrs. & that time the doctor only did a month of oral meds. I’ve seen the documentation suggesting that it is not only ticks that are carriers, but mosquitos as well & there’s been question that fleas & lice can be part of the carrier cycle.

One doctor here in the area pooh-poohed the reality of Lyme disease until his daughter-in-law contracted the disease & he’s done a real about- face of treatment, care, etc. It is a very real thing & I can’t imagine the frustration of this doctor (Neil Spector) knowing how crummy he felt & not getting treatment. I understand they are improving the diagnostic blood tests since when my daughter was first diagnosed. The doctor she had was frustrated because he said that the test wasn’t telling whether the titres were up or down—did she need more treatment or was she getting better?

Lets be very careful about over-extrapolating with this case history, while praising “Lyme Disease Aware” doctors and denouncing the medical profession in general without understanding the pathophysiology of Lyme and like intracellular diseases AND RATIONALLY and cost-effectively using that pathophysiology in our treatment.

Intracellular pathogen infection in general activates a nuclear factor NF-kB to induce the transcription of a set of reactive oxygen species generating enzymes. These enzymes generate superoxide (the one electron addition to the outer shell of oxygen), a free radical with an unpaired electron that aims thermodynamically to be paired with another electron or “be lost” from the outer shell of oxygen and be “donated” for redox reactions that, in turn create other reactive species such as hydrogen peroxide and the hydroxyl radical.

So there is “Initiation” by the intracellular critter of the generation of INTRACELLULAR reactive oxygen species that are “normal signals” for cellular function in physiological quantities BUT “abnormal signals” in pathophysiological quantities as initiated by intracellular critter infection. The design of this “defense” is to kill the critter as it likely does BUT the unintended consequences are, in part, described by the following cascade:

Intracellular infection —-> “oxidative stress” as discussed above —> activation of NF-kB —> MORE and sometimes much more oxidative stress —> effects on mitochondria, neurons, the endothelium……cardiac cells……etc such that there is PROPAGATED all sorts of pathophysiology including a switch in high energy molecule production, in part, from the mitochondria to the “glycolytic pathway” as occurs in normal aging causing extreme fatigue or at least unusual fatigue; endothelial dysfunction, neurovascular dysfunction, regional blood flow abnormalities…..etc causing arthralgia, polyneuropathy, accentuated fatigue……etc; radiculneuritis from neuron dysfunction and chronic inflammation causing weird and disabling neurological symptoms.

Yes diagnosis is needed BUT if one understands the above pathophysiologies it is possible to effectively treat some of these consequences of these pathophysiologies by addressing them directly RATHER than loading people INPPROPRIATELY with tons of IV antibiotics for years of very expensive therapy.

For instance I have seen patient with “chronic lyme disease” that have been treated for literally decades with IV antibiotics that do have a very very very expensive anti-inflammatory effect BUT did not get at the underlying PROPAGATION PATHOPHYSIOLOGY.

What is very inexpensive, for instance, to treat the CHRONIC and very bothersome radioculoneuritis symptoms that can result from intracellular pathogen infection?

Answer: Benfotiamine, a fat soluble derivative of vitamin B-1. I have seen patients with “chronic lyme disease” for literally decades who have been treated with IV antibiotics ad nauseum (literally and figuratively) but still have episodes of severe radioculoneuritis pain. I ask them to take Benfotiamine 300 mg before breakfast and 300 mg before bedtime. In 2 to 3 weeks their chronic severe radiculoneuritis pain is down to zero or close to it. Now that does not mean it is “cured”. It can flare and it is likely that continued rx with Benfotiamine will be necessary. However this treatment can be had for as little as 12 dollars a month.

What can treat the extreme fatigue of “chronic lyme disease”? One rx that can help (but not necessarily “cure”) is: Ubiquinol + Pycnogenol that shifts high energy molecule production back to mitochondria and away from the glycolytic (and reactive oxygen molecule) pathway.

Benfotiamine, Ubiquinol and Pycnogenol should be in a first aid kit for prn (usually very safe) use by people who have the onset of unusual fatigue or radicuoneuritis pains.

AND when you get a rash on your body, whereever, take a smart phone picture of the rash and go to your doctor right away and ask your doctor: could this rash be caused by an intracellular pathogen that is treatable with antibiotics at its ONSET?

A clinical diagnosis of lyme disease or other intracellular zoonosis infection can be possibly be made by the primary care physician, an appropriate antibiotic be initiated AND Benfotiamine, ubiquinol, Pycnogenol started to avoid the chronic complications of an intracellular zoonosis infection.

Lets avoid the “expertise” of chronic lyme disease “doctors” if we can by smart and timely action by THE PEOPLE with their primary care physician with whom they have trust.

Otherwise we are just adding to the bankruptcy of our health care system, ad nauseum.

Dr. Ahoskie,

Your reply is very interesting. I have been sick with lupus and sjogren’s for 5 years, with cranial neuropathies, occipital and other cranial nerve -graines that are disabling. I have 24/7 LOUD tinnitus and have around 20 positive ANA’s.

I just did a stint at Shands and when they went to do my lip biopsy, the salivary glands were all completely disintegrated. He had never seen anything like it. He had to go under my nerves to find 4 glands. I failed salivary flow test with having 0.0001 amount of saliva as opposed to the normal 3 to 4. I failed all of my schirmer tests, have dementia-type forgetfulness, and psychotic episodes. Because my lip biopsy came back negative, Dr. Reeves at Shands said I have nothing and positive ANA means nothing.

I have normal spinal fluid and MRIs. I am at my wit’s end. Can I get the drugs you mentioned from my pharmacist? I’ve fought this autoimmune illness for so long. The tinnitus alone is so loud, it would have done most people in. I am 46 and am so so tired of the joint pain, occipital nerve pain and mania, etc. I don’t leave my house. How do I find a doctor like you in south florida? I was a very successful photographer/artist but can no longer lift my camera due to my cranial nerves.

Thank you. Thank you. Thank you for sharing this. I have been sick for 16 years. I have been encouraged today.

I’d have to echo what many of the posters are saying here:

There is so little interest, time and/or money in the medical community to treat chronic illness – even in general – that things like Chronic Lyme can go undiagnosed for years or decades.

Doctors need to be unshackled, to be free to use best judgement in the absence of a positive lab test. Where there’s smoke, there’s fire – where there’s inflammation, there’s infection.

We have so far to go, those of us who have been suffering for years, and few advocates. I’ve had to be my own doctor for the past 15 years. It’s maddening.

Thank you, Dr. Spector, for sharing your story. I hope the medical establishment listens to you and wakes up. Part of the problem with getting a positive Western Blot is the labs are not even testing for bands 31 and 34, which are highly specific for Lyme. That is a crime, highly unethical in my opinion. If someone has those bands on their test, they can be almost 100% sure they have Lyme. 31 and 34 are the bands the vaccine companies are using in their Lyme vaccine, yet the labs won’t even test for those, unless you use one of the tick-borne specialty labs. This is only one of the things that needs to change in helping people get accurate diagnoses.
PS Please come to Texas and tell the doctors here a thing or two! I cannot tell you how many times I have heard patients say their doctor told them “There is no Lyme in Texas.”

There is a Lyme Lab at Texas A & M University. Texas does have Lyme, probably underreported at this point and doctors do seem slow to admit that we have it here.

With the latest news on the antibiotic Cipro, could it be that these people are not suffering from Lyme disease at all and they are actually suffering from antibiotic-induced trauma to the central nervous system?

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