WBUR

The Debate Over ‘Chronic’ Lyme Disease

As part of WBUR’s special series on Lyme disease, former New England Cable News reporter Barbara MacLeod talked about her struggle for eight years to get properly diagnosed with Lyme.

MacLeod’s story received a lot of feedback Tuesday. One person posted a comment that says, “Thank you for running this series. I’ve been diagnosed with…Lyme disease, had IV antibiotics, and still have symptoms. My case seems to mystify doctors, but I can’t understand why when there are so many stories like this out there. I have spent years feeling crazy!” Another commenter, however, writes this: “It is irresponsible for WBUR to air such a lopsided segment in isolation.”

That criticism has to do with the debate over so-called “chronic Lyme,” which MacLeod and some other Lyme disease sufferers wonder if they have. There’s a deep division in the medical community over whether there is such a thing as “chronic Lyme disease,” and there’s ongoing debate over how to help people who suffer from long-term effects of Lyme.

Dr. Mark Drapkin is the associate chief of the Division of Infectious Diseases at Newton-Wellesley Hospital and a professor at the Tufts University School of Medicine. He spoke with WBUR’s Bob Oakes about MacLeod’s story and the debate over so-called “chronic Lyme.” The full interview will air this Friday, but because there was so much listener interest in this issue, WBUR decided to air an excerpt of their conversation Tuesday afternoon. (Update: The full interview with Drapkin is here.)

Bob Oakes: What do you say to someone like Barbara MacLeod who has had great difficulty with Lyme disease for a couple of decades and has had trouble getting treatment for it?

Dr. Mark Drapkin: Well, I hesitate to comment on a particular person’s illness.

Because you haven’t examined that person?

I haven’t examined the person. I haven’t gone over the medical record. I think it would be wrong for me to make any snap judgments about a particular individual’s diagnosis or treatment.

So what would you say to person feeling the symptoms — fatigue, headache, pain — and can’t find any answer?

I will be open-minded and I will not comment on an individual’s diagnosis until I have the data, the face-to-face talk time, the physical examination, the review of all prior laboratory testing. Those same symptoms could be early HIV infection. I would wonder, ‘Has the person been HIV tested?’ Those same symptoms could be those of lupus; I would wonder if that disease had been considered.

We heard Barbara MacLeod say in her report that she had been advised against trying to get pregnant. Is that a usual admonition for somebody who’s suffering from Lyme disease?

Absolutely not. And if there was one part of the report — which I did hear as it aired — that really upset me, it was that advice that she had received. There are no data that either I or the American Academy of Pediatrics — whose job it is to protect children — are aware of that suggest that Lyme disease has been associated with any fetal abnormalities. So it kind of broke my heart when I heard that she had received that admonition.

Tune in Friday morning to hear the rest of the interview with Dr. Mark Drapkin. (Update: The full interview with Drapkin is here.)

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  • Erconners

    I was misdiagnosed for many years as my symptoms (fatigue,headaches, vision problems, joint pain, cloudy thinking, some symptoms simiar to dementia) worsened until I found a physician who was willing to treat me with long term antibiotics antibiotics.  Now I have recurring bouts that respond to antibiotics.  I live on Cape Cod where the number of people that I know myself who are ill with a similar constellation of symptoms.  I find entomologists and veterinarians are more aware of the symptoms than MDs.  A local entomologist recently held an informational lecture about Lyme prevention entitled “One Bite Could Change your LIfe”.  The Lyme spirochete is a cousin to the syphyllis spirochete.  They behave in much the same manner.  MDs were in the same pattern of denial about syphyllis.   Spirochetes can hide and remain dormant and then become active.  I am very frightened for myself and angry when I read Dr. Drapkin’s rigid mindset. 

    • Eminkoff

      Why would Dr Draper imagine that in 8 years of illness and visits to doctors that all the likely suspects–those illnesses Lyme Disease is the Great Imitator of–weren’t ruled out. All the doctors who treated my daughter did that first thing. Most if them were unable to make a clinical diagnosis of the illness, however, or order an adequate blood test, such as the one from Stonybrook, which slowed a correct diagnosis for 18 months. We were lucky, in retrospect.

  • Alexander Davis

    I fail to see how this
    report is irresponsible.  
    Considering the fact that most Lyme victims do not see the tick or the
    rash, and considering that there are false negative tests, clearly many
    patients are not properly diagnosed at the beginning.  With no treatment, the disease can surely
    progress into a chronic situation.  The
    patient was living in a Lyme-endemic area, had symptoms of Lyme, and eventually
    had a positive test.  This must happen
    all the time.  To imply that the patient had AIDS instead is definitely irresponsible. And doxycycline can affect fetal development, according to the CDC.  

    • guest

      And this comment underlines how easy it is to misunderstand what seems clear.  The doctor said that Lyme disease is not associated with birth defects.  Completely unrelated to the antibiotic use.

      Journalists have a great responsibility to provide clear and complete coverage, to try to avoid widespread misunderstanding.

      • Alexander Davis

        The CDC reports that untreated Lyme can cause fetal infection and even stillbirth.  Here the patient was understandably concerned either about the illness or the drugs to treat it.  This is different from being cured and off all drugs. 

      • http://campother.blogspot.com/ Camp Other

        Guest,

        Please check out the abstracts and studies on this forum thread, Lyme and coinfections and pregnancy:

        http://www.lymeneteurope.org/forum/viewtopic.php?f=6&t=1577

        And this one on fetal transmission and pregnancy:

        http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=1587

        There are a number of case studies out there, though Lyme disease transmission to the fetus continues to be a controversial topic. It should be noted that in 2011,  a woman passed on relapsing fever to her baby in utero – a disease caused by spirochetal bacteria, Borrelia hermsii, which is far more closely related to Borrelia burgdorferi than Treponema pallidum, the other infamous spirochete which causes syphilis.

        See: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6110a3.htm for this case.

        There is evidence relapsing fever can be transmitted in utero. And some evidence of Lyme Borrelia bacteria found in placenta, and case studies of women and their babies who were affected. But how often this happens is something that is not clear. Additional research is needed, and giving any mother-t0-be antibiotics if she shows symptoms of Lyme disease is advised to avoid complications.

        • YOLANDA WOLFEL

          check the award winning DVD- UNDER OUR SKIN on your computer. It is the misdiagnosis of LYME DISEASE AND CO-INFECTIONS ACROSS THE UNITED STATES. I live in ELK COUNTY , in NORTH CENTRAL PENNA. and we share with CAMERON COUNTY AND CLEARFIELD COUNTY the most cases of LYME DISEASE, per population. My husband and I have CHRONIC LYME and I personally will challenge anybody to come and live in my home for one week and then tell us we do not have neurological, arthritic and cardiac complications of undiagnosed LYME DISEASE FOR THE PAST 45 YEARS !!!

  • guest

    Kudos to WBUR for noticing and responding to the feedback regarding this story so quickly.  I think Ms. MacLeod’s story is worth hearing.  WBUR runs these series to attract listeners who will tune in day after day, and I’m sure it works.  But there are plenty who will only hear or read this segment.
     
    I personally enjoy the week-long feature series; I love hearing persons’ stories.  But I have noticed, both in radio and newspaper feature series, that the individual entries tend to be reported as if the point of view was verified fact.
     
    I’m perhaps overly good at compartmentalizing, so I can appreciate a story and still file objections in my brain when something seems illogical.  But I suspect there are those who take anything they hear on the “news” as The Truth.  
     
    In the future, I hope WBUR will take care to air such stories in better context.

  • Steph

    Watch “Under Our Skin” it actually documents a mother giving it to her baby in the fetus stage!

  • Christine

    For me it is simple…many (MD’s included) will debate weather Lyme disease is or isn’t “Chronic” and does or doesn’t even exist right up until the day it happens to them or someone they love.  Once you have lived with it and seen it with your own eyes it is truly impossible to dismiss.  In fact, it is downright obvious.  

    When my three year old daughter- with an initial diagnosis of Juvenile Rheumatoid Arthritis- “responded remarkably” to antibiotics that should have been a wake up call to those initial diagnosing doctors that didn’t believe it was Lyme (they, in fact, wouldn’t even discuss the possibility that it was Lyme).  Yet some remained puzzled at the “coincidence” while others listened.  The swelling in her knee went away almost immediately and over the many months on antibiotics her other symptoms slowly diminished.  (Symptoms that, by the way, were lengthy and could not be explained by a diagnosis of JRA.)

    To discuss the debate over whether this disease is “chronic” or not was also very obvious to us.  Ultimately our daughter was on antibiotics for 14 months.  We attempted to take her off of the antibiotics on 4 different occasions (each time she had seemingly been cured for months) and within days of doing so her knee swelled up and she completely lost all ability to control her movement in her little legs (not a JRA symptom).  We restarted the antibiotics and she was fine again.  We weren’t imagining it and it was as clear as the nose on my face, as one might say.  With the antibiotics she was okay and without she wasn’t… over and over again.   Perhaps it was magic?

    Call the phantom symptoms MS, Lupus, JRA, chronic fatigue or whatever you want.  We don’t really know what causes these autoimmune diseases, right?  However, when and if the symptoms respond to an antibiotic it certainly makes sense to consider a bacterial infection.  

    Why not Lyme?  Why would AIDS be a more logical or palatable diagnosis?  Strange how so many in the medical community want so badly to convince people that what ails them isn’t something that it very easily and, might I add, logically could be…that part still eludes me.

    • YOLANDA WOLFEL

      Juvenile Rheumatoid arthritis was how LYME DISEASE  was discovered by Polly Murray in Conn. way back in the 70′s. there were over 60 children  misdiagnosed by the  ” MEDICAL EXPERTS “.  It was LYME DISEASE FOR ALL 60 CHILDREN.

  • trustinjc

    This lyme story is playing out over and over again, and not just in the northeast. My husband is suffering from lyme disease and co infections and was bitten by a tick here in Alabama!! But the Drs. here say that “we don’t have lyme here in the South”. Well, I beg to differ, and my husband is living proof, (if you want to call what he is going thru now “LIVING”). He was diagnosed with Parkinson syndrome because of his difficulty swallowing, tremors, and weakness on his left side by a “state of the art University Hospital”. It took us seeing a dozen different Drs. and 7 months before getting a lyme diagnosis. He lost 55 lbs. in a 4 month span….he was dying right in front of me and I didn’t know what to do. We are so very thankful for the lyme literate Drs that are willing to treat those of us with lyme. The medical community (including Dr. Mark Drapkin) better wake up and open their eyes, because this is becoming an epidemic. This is real, people, and I guess when some of those that vehemently deny that chronic lyme exists are faced with a loved one of their own having this disease, they will be forced to open their eyes!! I wouldn’t wish this on anyone, but if that is what it takes for those of us that are already affected to be heard, then so be it.
    Thank you WBUR for bringing this into the Lymelight (pun intended) !!!!

  • Goodday2b

    Look up the Embers study on late stage Lyme Disease.  It clearly shows Lyme can persist well after 90 days of treatment if the treatment was delayed at onset.  The findings were produced 11 years ago but the study was never published.  Criminal.

  • Anne Berg1

    I live in Rockingham County, NH,  just over the border from Haverhill. Three people in my family have had Lyme or Lyme-related infections. Our area is loaded with ticks, and over 70% of them carry Lyme or Lyme-like diseases (at least those that show up on tests), according to our cooperative extension service. There are many kids affected in our schools, school nurses can attest to that. Lyme-literate doctors are precious and few in NH, but thank goodness we have health professionals who successful at curing people. My advice: RUN from Boston hospitals and infectious disease MDs. Don’t waste your time, effort or money. Call your local Lyme advocate group. Or call someone you know who has had Lyme and saw a LLMD (Lyme-literate MD) and get referred. Watch “Under My Skin”, the film mentioned by someone else here. It’s eye-opening. And it’s tragic that we have a public health controversy like this in 2012. People are dying or living miserable lives because of this disease. This is a public health emergency. 

  • KS

    My story is one similar to Barbara’s.  I was just diagnosed 1 year ago. 

    I think one of the important facts that is not mentioned in her original story or here is that indeed the years of steroids compromised her immune system and likely allowed the infection to spread, dig deeper, and be harder to detect and eradicate.    With all due respect to Dr. Drapkin, that is the danger of treating Lupus or RA , or other autoimmune disease (few diagnosis of these are  and dry)  without first doing a trial run of antibiotics when Lyme is even slightly suspected.  

     I am constantly 2nd guessing my diagnosis.  Maybe I really do just have fibromyalgia, or getting older.  I worry about long term antibiotics.    But I notice a big difference on them.  It is the difference between functioning and not.   When teenagers are given long term antibiotics for Acne… or adults for chronic sinusitis, the medical community does not bat an eye.  So why is an antibiotic trial so unquestionable when Lyme is even a remote possibility?  If one does have Lyme shortly after starting antibiotics you will know it.

    Like Christine says, whatever it is, if it the symptoms respond to antibiotics, it just makes sense. 

  • Steveeb

    This is the same kind of non-scientific arguments that have been used about the cause of autism. No detectable bactiria  in these patients. No test results that show a difference between a placebo and long term antibiotic treatment. Symtoms so broad that they can’t be differentiated from a host of other named syndromes.
    BUR, you should have done your homework on this. There is no medical or scientific controversy.

    • anne.berg1

      What study are you referring to that doesn’t show a difference between placebo and LT antibiotic? Yes, the symptoms are broad. LLMDs call it “the great imposter.”  Look through these comments and similar symptoms are mentioned — along with relief when put on antibiotics. Diagnose by antibiotic reaction is not the way to practice medicine. But the medical community is failing us all. And the insurance companies make it worse.  

      These stories are heartbreaking. 

    • Spaniels

       There is more evidence and science coming out from university based research labs (Columbia, UC Santa Cruz, New Haven) backing up the ‘lyme literate doctors’ assertions about chronic lyme and its treatment than there is in  the thin veneer of lyme information touted by the CDC and IDSA relied on by most “orthodox” medical practitioners.  There is also no double blind placebo test backing up the MAJORITY of accepted western medical practices either.  Your argument is dogmatic, reactionary  and just plain wrong.  There is empirical evidence going back at least 20 years of lyme literate doctors  treating patients abandoned or mistreated by mainstream medicine for lyme with long term multi antibiotic regimens and bringing them back from the dead (nearly).  “Orthodox” medicine is wrong on a number of issues and on this one they have so severely and unnecessarily missed the mark and cling to old, dodgy. scientifically naive arguments such as yours just to try to save themselves from embarrassment and likely, litigation.  People rarely change their minds when a new paradigm is introduced, rather the old guard just eventually dies out and is replaced with the new.  You are a dinosaur. 

    • Lili

      I agree with Steveeb, the so-called “Lyme Literate Doctors” like to pose this as a “deep division” in the medical community. There are a handful of hucksters who victimize their patients with their claims of cure.
      The truth is that there is no real controversy. “Orthodox” medicine and modern science have put an end to polio, produced highly effective vaccines against terrible scourges such as diphtheria, tetanus, influenza and others. While there is certainly a lot more to learn about Lyme infection and other diseases, I will put my money on a scientific approach to medicine any day. These ILADS people are willing to expose their unfortunate patients to huge risks in order to enrich themselves. If you think these “lyme literate” doctors are not in it for the money, read “Lyme Inc” in Forbes Magazine, May, 2007. They focus on one physician who collected $6,000,000 from Blue Cross alone in a single year.  That is what most ligitimate physicians make in their entire career. These people are slick and take small bits of peer reviewed literature and piece them together with a lot of anecdotes to create pseudo-scientific reports. There is a whole industry out there, and it is expanding. Not only are people treated for so-called “chronic Lyme” but most also recieve bogus diagnoses of “co-infections” with chronic Babesia, Bartonella, Ehrlichia and others. They also peddle “neutraceuticals to their victims. I have seen patients who were on NINE antibiotics simultaneously for months for these conditions. So, while orthodox medicine may not have the complete answer, at least the same thoughtful, scientific approach that has rid the world of smallpox and polio (nearly) is being employed, rather than conjuring up whatever data is most profitable.

      • Christine

        The world is unfortunately full of greedy and corrupt people of all professions and walks of life.  Sadly doctors, “lyme-literate” or not, are certainly not an exception. Deciding that “these ILADS people” (assuming you mean all) are treating patients with Lyme to “enrich themselves” is such a ridiculous over-generalization.  I am aware that some Lyme-literate doctors may be treating this disease for all of the wrong reasons.   There are doctors through out multiple areas of medicine that are capitalizing on various illnesses.  (Plastic surgery just came to mind but I would be intelligent enough not to over-generalize.  Certainly the vast majority of plastic surgeons are helping people and not taking advantage of an illness.  I digress…)  The majority of Lyme-literate doctors are true medical professionals that are trying desperately to HELP their sick patients especially when all else has failed.  To that the one aspect that you are clearly missing, most of these doctors are not renegades haphazardly treating without regard for science.   Some have treated thousands (upon thousands) of very sick patients SUCCESSFULLY using the very science that you are waiting upon.  I must also contend that many of the “lyme-literate” doctors found themselves practicing in this area of medicine (not for the wealth) but due to personal experience with the disease.  Perhaps only once you have seen this disease up close and personal and / or have watched a loved one suffer (and thus get better with the aforementioned “unorthodox medicine”) will you be willing to open your mind? 
        Worrying about a few misguided doctors and their wealth is exactly what will continue to stall the “thoughtful and scientific approach” that we all so desperately need to unlock the mysteries of this disease.  You can continue to worry about those few but I, for one, don’t want to wait for you to catch up while another child suffers.  I will stick with the doctors that saved my daughter’s life.

      • Christine

        Just another thought for you…

        You mentioned polio and the “thoughtful science” that has nearly rid the world of this awful disease.  Jonas Salk was known as “The great innovator believed that the answers to life are often found in an individual’s experiences rather than buried among the pages of a textbook. Indeed, the ideas that formed the foundation of Salk’s greatest accomplishment–the first effective polio vaccine–were not found in any fancy college textbook, but came to light because he did not believe that some established scientific theories were the only way that problems could be solved.”  From what I understand many doctors criticized his thinking and approach and it came with quite a bit of controversy.  Many thought he was crazy.  He in turn never had the polio vaccine patented perhaps to prove to people that it was not wealth he was after.  Hum…now he is a hero in your eyes but I bet you would have been one of those to question his approach.  Likely it will be one of those “hucksters” sitting on your pedestal for having found the cure for Lyme disease.

        There are doctors that step outside the box and cure diseases.  That is EXACTLY what “thoughtful science” and medicine is.  They become the heroes and the saviors.  Then there are those that treat to the best of their ability, albeit still noble and valued.

      • Solasdesigns

        Just an FYI, Most LLMD’s do not take insurance & have to stay under the radar because of fear of having their Licenses taken away because they buck the CDC & AMA protocols. My “Mainstream” doctors ignored my illness & misdiagnosed me with MS, ALS, Lupus, & Parkinson’s so that they could keep their insurance companies happy!! I have Chronic Lyme Disease & all of the co-infections. So I have every damn thing a tick can give you. It has all settled in my central nervous system & brain after being mis-diagnosed for 5 years. I cannot not work, I cannot get disability, I cannot use my health insurance. Does it piss me off?? YES! Especially the fact that someone can get their lap-band paid for by my insurance company but I can’t get my meds paid for & the fact that I am unable to work & cannot get disability without a huge fight because I have Lyme.

  • Mrcooch77

    I had lyme disease for 10 yrs before being diagnosed- had terrible stomach problems along with joint pain and head pain- the doctors told me lyme doesn’t affect the stomach so it must be irritable bowel syndrome- don’t tell me lyme isn’t chronic- I satill have many problems but now have lupus, celiac disease, thyroid problems etc. who know which came first?

  • p_cayer

    In medical school they tell you, “If you’re in Central Park and you hear hoofbeats, think HORSES, not ZEBRAS.  If you are in CT or MA, and have neuro, cardiac, psych, arthritic symptoms consistent with late-stage Lyme, then GODDAMMIT think LYME, not MS, ALS, fibromyalgia, etc., and CERTAINLY don’t think ACHES AND PAINS OF DAILY LIVING!!

    This is a public health disaster.  Get ready for a medical scandal the likes of which this country has never seen.  Millions are infected.  Untold thousands have been UNDERTREATED so they now have late-stage Lyme.  I believe if all infected individuals were to be diagnosed and treated, our health care system would collapse.  It is THAT BAD.   Half my neighborhood has Lyme, most undiagnosed or misdiagnosed.

    Whatever you do, RUN AWAY from Yale, UCHC, and HOLD THE MAYO.  Only go to an ILADS doc.  Watch the documentary Under Our Skin.  Read Cure Unknown by Pam Weintraub.

    Let’s bring those responsible for this disaster to justice.

  • Alexander Davis

    The CDC Lyme web site
    states, “if left untreated, infection can spread to joints, the heart and the
    nervous system.”  It also reports that “approximately 10 to 20%
    of patients treated for Lyme disease with a recommended 2-4 week course of
    antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle
    aches. In some cases, these can last for
    more than 6 months.”  In
    addition, the CDC website (under FAQ) states that people given antibiotics
    early may not produce enough antibodies to have a positive test.  
    Certainly there are some people who believe they have Lyme when they do not.  On the other hand, there must be large numbers of untreated patients (since most people do not see the tick or the rash) whose infection has spread to joints, heart and nervous system.  These patients must be treated and not pronounced fraudulent.  The same goes for the 10-20% of those treated who continue to have symptoms and may even have a negative test due to antibiotics.  

  • Jerryleonard999

    There is not debate… it’s Tuskegee Part II, run under the national security umbrella:

    Lyme Disease and Biowarfare

    https://sites.google.com/site/jerryleonard999/home

  • Jerryleonard999

    July
    2011, Public Health Alert:

    “The Lyme Disease Epidemic: CDC Tuskegee Experiment, Phase II”

    http://www.publichealthalert.org/Articles/miscellaneous/tuskeegee%202.pdf

    ‘As a result of the use of treatment guidelines to deny treatment, America’s
    most egregious example of medical malpractice through treatment-denial is now
    an everyday reality, conducted on a grand scale, and run with the complicity of
    the CDC and other public agencies, which are exploiting the public instead of
    protecting them. I have referred to this as the institutionalization of the
    Tuskegee Experiment.’
     

  • Jerryleonard999

    Tuskegee, Part II:Physicians Round Table (2012): Invited Talk

    Connecting the Dots: Lyme Disease and Biowarfare
    Part 1: http://www.youtube.com/watch?v=HEQ62i_CoYY
    (Tuskegee Experiment Update, Lyme Disease as “Tuskegee, Phase II”)

  • Jerryleonard999
  • RNwithLyme

    WBUR should have a Lyme-literate physician on as well to counter Dr. Drapkin–in the medical establishment, there are two sides to the chronic Lyme debate and both sides should be represented in order to give listeners the full picture.

  • Gillianaskew

    My ex-husband claims to have chronic lyme.  He did the antibiotics and herbs.  All I know is he drives all the way to New York for morphine, vicodin and percocet.  It’s been like this for 15 years.  I don’t know if his symptoms are addiction or lyme.

  • Ttmp11

    I too am extremely, extremely distraught over this disease.   Twenty-two days ago they told me I tested POSITIVE for 3 strains of European lyme disease.  I also may have two types of cancer – don’t know yet, and am delaying things until I find out about Lyme disease.

    I am now waiting yet another 14 days for them to disprove that I have it, or whatever they are doing.   I have no idea what’s happening and am left out in the cold in the most serious and depressing time of my life.

    How would  you like it if someone told you that one of your kids tested positive for 3 different strains of Lyme disease and a possible two types of deadly cancer and you were just expected to sit back and be cool about it, and one of these months your 14 day tests might be over?   I already had breast cancer and a huge pituitary tumour (now 1.2 cm) and recently other big skin changes.

    What also, is going to happen now to the investigation they were doing about my disintegrating spine and my complaints about increasing inability to walk?   Will spinal surgery be put on the back burner now because it might be Lyme that has infiltrated my entire musculoskeletal system?

    As you can see, I probably have one of the most serious cases in the world to be expected to not be depressed about, yet I am told to cool it and just be patient while no one gets back to me (and I suspect also my doctor) about anything.     They will call me one of these weeks, months or years when they have finally decided what’s going wrong.

    I am so, so depressed and upset that these 14 day tests take so many weeks (or months even, possibly) and that I have been locked out of all forms of discussion regarding this.

    After about $50,000 in medical bills over the last several years, it was “I” who asked, “why, with so much chronic illness and a spine deteriorating so fast that I even had a total hip collapse and had to go to the hospital and then was left with even more damage (now to the hip and permanent) — why  was I never ever tested for Lyme disease, Lupus, TB, MS, or ALS?”

    Surely when a patient has such high medical costs, (and every report, x-ray and MRI  comes back very bad) there has to be a causative factor I kept telling doctors over the years.  I didn’t believe it was 100 different diseases, but only one — but the doctors all wanted to believe it was a hundred.

    My blood platelets have been falling and falling for months as well, and basically the answer of doctors was, “well don’t worry about it until they reach about 60 (the death point at which I would either have to have my spleen removed or my blood platelets replaced.   

    I did worry, as anyone would have, even though doctors are so casual about it.   The last time they were read, they were at 120, but I hate to see them fall so fast.

    When Lyme disease costs about $50 to treat in many cases, why would the medical system, which claims it is so broke, prefer instead to treat cases that add up to about $50,000 over a period of seven years?   I totally don’t understand this and am highly distraught that doctors never look for a key cause when such serious things happen to patients!

    I am hanging in there…..  for what seems like forever… for three or four now likely death report results, in which most treatment for me will likely be discontinued as I may now be left to die as a result of the high costs to the system.

    Extremely extremely depressed and distraught.

    And no, don’t let people tell you that unless you’ve had a rash, you can’t have Lyme disease.  So many doctors still believe this.    Everyone, over the years, especially those with pets, will get bitten from time to time and an awful lot of people won’t recall any such rash or bite.

    And now I’m hearing that even mosquitoes and fleas can pass on this disease.

    • Christine

      Please do not wait for ANYONE to help you.  You need to help yourself.  Had I waited for the medical community to care (‘how could they not’ I kept asking myself) my child might have died.  I understand how hard it is to take action when you are sick and depressed but use the very last bit of will you have and call a Lyme literate doctor in your area.  Should that doctor not be the solution try yet another and so on.  We are buried in debt but my daughter is alive and that is all that matters for now.  The people that survive this disease are the ones that think that they are going to.

  • Guest

    By the way, I live in Alberta, Canada, the land that appears to apparently not have such things as  lyme disease and no dangerous oil spills.

    Why is it so difficult to find out how many cases of lyme disease have been reported in your area?

    And yes, I too was one of those who didn’t recall any strange looking bite.  Again, people with pets get many — and for all I know I could’ve caught it from a mosquito anyway.

  • Anomaly

    She could be telling my story. Like Barbara, I’ve had lyme since a 1988 tic bite, along with weird symptoms, that was mistakenly diagnosed as ringworm. As a professional with a reputation to protect, I hide my disease from most of the world, and nobody knows that some days (or months)  it is all I can do to move from the bed to the recliner. Trying to function normally with such pain, fatigue and fear–for when the body is in jeopardy, it can be frightening–is very taxing indeed.

    It is staggering and outrageous to me that the medical community denies there is such a thing as chronic lyme disease. I am far from a hypochondriac and a whiner. I used to describe myself as the healthiest person on the planet! The list of symptoms from this disease is so terribly long that I simply don’t tell anyone because, as Barbara says, they would probably think I was psycho. The suffering is immense. Weeks of massive doses of i.v. antibiotics gave me a 9-month reprieve. Then the lyme came back with a vengeance. After so many thousands of dollars invested in treatments, I have come to the conclusion that these huge doses of antibiotics are unwise and dangerous. A truth that we lyme sufferers don’t like to admit is that a number of the so-called “lyme-literate doctors” are actually quacks who have jumped on the bandwagon to milk the gullible. One of the most famous lyme physicians, for example, started out in a clinic to help men increase the size of their penises. It is so rare to find a sane, intelligent physician who understands this disease. Nobody really knows yet how to cure it, though.We need alternatives to what is currently available. Maybe someone, somewhere, with the influence and power will read our stories and begin promoting research to find a cure. I believe one can be found. 

    • Guest

      You may like the book “Healing Lyme” by Stephen Buhner.  He is a master herbalist.  We  contacted one of the herbalist referenced in the book and used his recommendations to treat our children.  This was after we also became a bit weary of all the antibiotics and watching them do more harm then good.  The herbs, as powerful as they are, did what the antibiotics could not for our family.  Not to mention, in a kinder and seemingly more gentle way.  The herbalist we used is likely one of the most caring and intelligent people I have ever met (I am not easily impressed!)  Also, just FYI, I wasn’t necessarily a person that would gravitate towards the more natural approach when this all began.  For my children it was the answer.  Hope this information helps you.

      • ruthW

        I was JUST diagnosed a few weeks ago with Lyme…. I have had about a year of  nausea,  fatigue and joint pain.  I, too, am not really one to embrace “a more natural approach,” but my “regular” doctors have not been able to help me at all.  I feel like my friends and family are starting to think that it’s all in my head.  I am a very fit and lean person, and eat very healthy (compared to the average American.)    What I don’t understand is why this is controversial.  I had the Western Blot and ELISA (?) test and they both were positive.  So why are mainstream doctors not believing this?  If people have positive tests, then what argument do they have? The more I research, the more confused I get.

        • Maimie Mac Diarmid

           I have been diagnosed with Lyme disease  for almost one year  but first of all I was treated for  phlebitus     which did not help the marks on my leg .  Another doctor recognized  the marks  and took a blood test  and then was given antibiotics  . However  all my joints are very painful  and   for energy  from a very active person  to  just pushing myself to do things  feels bad . .  What happens now   my doctor says I can take up to eight paracetamols a day  for the pain .. I  think  this is terrible  surely there is something else   can be given .. I feel  the problem with  Lyme disease is been pushed under the carpet   and I do not know where to go from here..Maimie

      • Nancyegger

        I hope there is an herbalist on the book’s list in California.  thanks for the tip.
         

  • Joan

    Dr. Drapkin states, “There are no data that either I or the American Academy of Pediatrics —
    whose job it is to protect children — are aware of that suggest that
    Lyme disease has been associated with any fetal abnormalities.”

    However the CDC states, “If you are pregnant and suspect you have contracted Lyme disease,
    contact your physician immediately. Untreated Lyme disease during
    pregnancy may lead to infection of the placenta and possible stillbirth.”

    Once again Dr.Drapkin puts foot in mouth and drags down
    American Academy of Pediatrics with him. 

    WBUR,  Thank you for giving Lyme Disease  attention and showcasing yet another ignorant doctor who denies it’s existence.  

  • Kelkat3

    I do not understand why Lyme  has to be so cut and dry. Lyme should be treated case by case not a text book 2 week treatment. Tell me another disease that has one set numbered day treament, then case closed. The treatment of the common cold  or flu has a longer treatment plan. This makes no sense, and is unacceptable. I just hope and pray none of their loved ones succumb to chronic Lymes. They only have a 2 week window for a full, miraculous, long lasting recovery.

  • K9kahne00

    I have suffered from Lyme disease for over 7 years and it seems I’ve been bitten multiple times..right now I am going through IV treatment..I feel the issue with chronic Lyme is the abilty to catch it in time..tests are only 40 perfect accurate..and Lyme disease memics SO many other things..if not caught in time this disease attacks the bone and nerves..I feel let’s concentrate on catching it in time so it can be treated properly rather than fighting over is chronic an issue or not..

  • rocknlocks

    Hey Folks, just wanted to chime in as my hubby is currently on Dr. Marshall’s high HCL (hydrochloric acid) protocol to completely eradicate his chronic Lyme. If he is successful, I will start the protocol immediately as I have it as well (can be sexually transmitted). We should know the results of the test in the next two weeks. I will try to remember to post back here to let you all know. If anyone is interested, a practitioner posted info about this fairly new proto here – http://www.totalhealthsecrets.com/ENGLISH/catalog/collection_display.php?product_collections_id=85.

    Hubby and I have been using Dr. M’s Quantum Nutrition Labs supplements for a couple of years now to address a number of different issues. The Lyme didn’t actually reveal itself until about a year ago as the body will only reveal what it is capable of dealing with. I actually attempted to get started on the high HCL proto a couple weeks ago but got “sick” with what I thought was a cold. Using the remote testing available using Zyto technology, my practitioner was able to determine the exact cause of my sickness and that is was directly caused by the Lyme and co-infections bacteria. Apparently, my body was not able to handle the rate of detox that I had imposed on it. Fearing that my 135lb. would not deal well with 24 caps at meals, I thought I would spread the doses out, taking some every hour I was awake and quickly reach my ideal dose (72/day) so I could save money and get started on the 21 days straight prescribed proto. I had attempted to ramp up my doses quickly by going from taking just 3 HCL and 1 activator only with meals to taking 3 HCL every hour for 12 hrs per day (with 3 activator, one at each meal) rather than taking 24 at once at meal times. Since the first day went well, I upped my dose to 4 HCL every hour the next day. By the end of that day, just before my last dose for the day, I got a sick headache and had to lay down. About an hr later I threw up and felt sick all night. The next day I started to feel like I had a cold w/chest congestion and the need to cough to clear it. As it progressed over the next week and half, my nose began to run and I had constant mucus. There was a rattling sound in my chest when I breathed deeply. I sounded terrible. I was unable to continue w/the HCL proto and feared that it was too much for my body to handle that plus the “cold”. Later I found out during my Zyto session that the “sickness” was actually a result of my ramping up the HCL too quickly and w/o the right support. I didn’t realize how essential the kidney and PH support really was though my practitioner had tried to tell me. So a word to the wise. If you are going to attempt a serious proto like this, even if you are feeling really strong and healthy, do what you need to, to support your immune system prior to beginning. The above link will give you a general idea of what kinds of sups you will need and the potential expense. It’s not cheap but I think being rid of Lyme and being able to be a normal human being again is worth the expense.

  • Guest

    What happens to the people who get a tick bite and there immune system is too weak to create all the antibodies to lyme right awa

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