Earlier this month I wrote about some of the people who claim to be Lyme disease experts, and specifically about an article in the Journal of Medical Ethics, and its author. The article was truly horrid, especially when presented in the context of an ethics journal. My ethicist friend weighed in at the time, and now she informs us that the journal has printed a response.
Background
Lyme disease is a relatively common bacterial infection acquired from the bite of a tick. Many people who are infected develop a characteristic rash, and if they are treated at that point, that's the end of that. If they are not, some go on to develop swollen, painful joints (usually a knee), or some neurological symptoms such as Bell's Palsy. There is a group of folks out there who believe that there is also an entity which they call "chronic Lyme disease" (CLD). This is often treated with long-term antibiotics by self-anointed "Lyme-literate doctors". What are the symptoms of CLD? This list is typical:
The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)# Rash at site of bite
# Rashes on other parts of your body
# Rash basically circular, oval and spreading out (more generalized)
# Raised rash, disappearing and recurring* Head, Face, Neck
# Unexplained hair loss
# Headache, mild or severe, Seizures
# Pressure in head, white matter lesions in brain (MRI)
# Twitching of facial or other muscles
# Facial paralysis (Bell's Palsy, Horner's syndrome)
# Tingling of nose, (tip of) tongue, cheek or facial flushing
# Stiff or painful neck
# Jaw pain or stiffness
# Dental problems (unexplained)
# Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose* Eyes/Vision
# Double or blurry vision
# Increased floating spots
# Pain in eyes, or swelling around eyes
# Oversensitivity to light
# Flashing lights/Peripheral waves/phantom images in corner of eyes* Ears/Hearing
# Decreased hearing in one or both ears, plugged ears
# Buzzing in ears
# Pain in ears, oversensitivity to sounds
# Ringing in one or both ears* Digestive and Excretory Systems
# Diarrhea
# Constipation
# Irritable bladder (trouble starting, stopping) or Interstitial cystitis
# Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)* Musculoskeletal System
# Bone pain, joint pain or swelling, carpal tunnel syndrome
# Stiffness of joints, back, neck, tennis elbow
# Muscle pain or cramps, (Fibromyalgia)* Respiratory and Circulatory Systems
# Shortness of breath, can't get full/satisfying breath, cough
# Chest pain or rib soreness
# Night sweats or unexplained chills
# Heart palpitations or extra beats
# Endocarditis, Heart blockage* Neurologic System
# Tremors or unexplained shaking
# Burning or stabbing sensations in the body
# Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
# Pressure in the head
# Numbness in body, tingling, pinpricks
# Poor balance, dizziness, difficulty walking
# Increased motion sickness
# Lightheadedness, wooziness* Psychological well-being
# Mood swings, irritability, bi-polar disorder
# Unusual depression
# Disorientation (getting or feeling lost)
# Feeling as if you are losing your mind
# Over-emotional reactions, crying easily
# Too much sleep, or insomnia
# Difficulty falling or staying asleep
# Narcolepsy, sleep apnea
# Panic attacks, anxiety* Mental Capability
# Memory loss (short or long term)
# Confusion, difficulty in thinking
# Difficulty with concentration or reading
# Going to the wrong place
# Speech difficulty (slurred or slow)
# Stammering speech
# Forgetting how to perform simple tasks* Reproduction and Sexuality
# Loss of sex drive
# Sexual dysfunction
# Unexplained menstral pain, irregularity
# Unexplained breast pain, discharge
# Testicular or pelvic pain* General Well-being
# Phantom smells
# Unexplained weight gain, loss
# Extreme fatigue
# Swollen glands/lymph nodes
# Unexplained fevers (high or low grade)
# Continual infections (sinus, kidney, eye, etc.)
# Symptoms seem to change, come and go
# Pain migrates (moves) to different body parts
# Early on, experienced a "flu-like" illness, after which you have not since felt well.
# Low body temperature
# Allergies/Chemical sensitivities
# Increased effect from alcohol and possible worse hangover
This particular site suggests that twenty "yes"es is a possible case. Now, this kind of "Chinese menu" is not unheard of in medicine, but usually it's been validated in some way rather than having emerged de novo from someone's rectum (which is probably also a sign of CLD).
So what we have is a group of people who are suffering, a group of self-appointed medical experts, a disease whose description can fit anyone, and a lot of yelling.
The "guideline" debate
The Infectious Disease Society of America issues treatment guidelines for, well, infectious diseases. One of these is Lyme disease. This is a source of contention for the CLD folks. Many of these so-called experts give long courses of intravenous antibiotics and other unconventional therapies to the patients whom they've identified as having CLD. This bothers the CLD folks---they say that the guidelines were developed improperly and that they have so much influence on insurers that they effectively prevent people from obtaining treatment. The truth is somewhat different.
What is and isn't recommended
In their guidelines, the IDSA does, in fact, recommend antibiotics for some of the late manifestations of Lyme disease, for example:
Late neurologic Lyme disease: Adult patients with late neurologic disease affecting the central or peripheral nervous system should be treated with intravenous ceftriaxone for 2 to 4 weeks (BâII). Cefotaxime or penicillin G administered intravenously is an alternative (BâII). Response to treatment is usually slow and may be incomplete. Reâtreatment is not recommended unless relapse is shown by reliable objective measures. Ceftriaxone is also recommended for children with late neurologic Lyme disease (BâII). Cefotaxime or penicillin G administered intravenously is an alternative (BâIII). See the recommendations above on the treatment of Lyme meningitis for suggested doses of each of these antimicrobials.
But they do not give carte blanche:
There is no wellâaccepted definition of post-Lyme disease syndrome. This has contributed to confusion and controversy and to a lack of firm data on its incidence, prevalence, and pathogenesis. In an attempt to provide a framework for future research on this subject and to reduce diagnostic ambiguity in study populations, a definition for post-Lyme disease syndrome is proposed in these guidelines. Whatever definition is eventually adopted, having once had objective evidence of B. burgdorferi infection must be a condition sine qua non. Furthermore, when laboratory testing is done to support the original diagnosis of Lyme disease, it is essential that it be performed by wellâqualified and reputable laboratories that use recommended and appropriately validated testing methods and interpretive criteria. Unvalidated test methods (such as urine antigen tests or blood microscopy for Borrelia species) should not be used.
There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease. Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (6 months) subjective symptoms after recommended treatment regimens for Lyme disease (EâI).
The "E-I" refers to the quality of the recommendation. "E" means "strongly against", and "I" means the evidence is from more than one properly randomized, controlled trial.
According to the unethical paper in the Journal of Medical Ethics referenced earlier:
One group of doctors, the Infectious Diseases Society of America (IDSA), issued Lyme treatment guidelines in 2000 that promoted a narrow definition of the disease. These guidelines excluded most Lyme patients and denied them treatment for their illness.
This is either ignorance or mendacity. What makes the definition "narrow"? How does it "exclude" people from treatment?
Doctors can treat people however they wish; in fact, even blatant quackery is rarely illegal. If I were to hang out a shingle and start giving IV antibiotics for "chronic Lyme disease", no police would knock on my door, no medical board would yank my license. My conscience, however, would ache. In fact, what the IDSA does is define the disease based on the available science, and give treatment guidelines (which are not binding) based on the available evidence. They do recommend antibiotics in people with the disease, but explicitly exclude people in whom the disease has been diagnosed by strictly subjective means or by means of illegitimate laboratories.
So what are the CLD people whining about?
Goalposts
When the available evidence doesn't support your conclusions, but you are certain you are right, then you have limited choices: either admit that you may be wrong, or find reasons that the evidence as presented is wrong. The CLD folks point out a couple of things. First, they are concerned that the IDSA guidelines are tainted by conflicts of interest (COIs). They have made a very unconvincing case for this. For a conflict of interest to have a deleterious effect it must be significant, and the party with the conflict must be able to benefit from abusing the conflict. No such situation exists. The tortured logic of the CLD advocates is pained, to say the least. They claim that the IDSA ignored evidence, and had COIs that would drive them to create the current guidelines. To quote ethicist Dr. Janet Stemwedel in relation to the JME article:
Here, there is no substantiation of the claim that the IDSA denied these requests for participation. Nor is evidence presented that the panel was designed to include only researchers "known to have a bias against the diagnosis and treatment of Lyme disease" (presumably on the basis of Johnson and Stricker's preferred definition of Lyme disease rather than the definition from the 2000 IDSA guidelines). Nor, for that matter, do Johnson and Stricker cite the papers that present the "evidence of persistent infection or clinical improvement in patients with persistent symptoms of the disease" that the 2006 IDSA panel purportedly ignored.
[...]
I don't think there's much disagreement that medical and scientific decisions should not be driven by commercial conflicts of interest. It's a harder question whether we can tell if someone who has commercial interests that create a potential conflict is in fact driven by those interests (and if so, to what extent).
Since the COI arguments are invalid, they need other goalposts to move. One is laboratory tests. CLD doctors work backwards---they make the diagnosis and then dig around for a test to confirm it. In the case of Lyme disease, when they do not get the result they want, they go to other, more "compliant" labs, or they re-interpret traditional test ranges. This is patently dishonest, and is also just bad medicine.
You lack compassion, Doctor
Those of us who speak out against medical "movements" such as CLD or morgellons syndrome are often accused of lacking compassion (and of far, far worse things). This is a straw man argument meant to distract from the real debate. The real question is not whether or not I or anyone else cares about someone's suffering; it's what we do about it. If we respond to someone's suffering and uncertainty by hitching them to a fake diagnosis using all sorts of byzantine chicanery, that is not compassion. Compassion is acknowledging suffering, giving people accurate information even if it isn't what they want to hear, and staying involved with their care.
Uncertainty is part of medicine, part of being human in fact. So is suffering. Both can be mitigated, but neither should be treated with lies.
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There is a fine line between respecting someone, respecting someoneâs beliefs and enabling them. I want to always respect the person; I never want to enable them to harm themselves or others.
I am reminded about the story about my exâs grandmother dying of an intestinal blockage because she was a Christian Scientist (I think in her 60âs). Most of the family went and stood around to watch her die (this was long before I knew my ex) knowing exactly what was happening (some couldnât bear to do so). My exâs other grandfather was a Jewish surgeon who founded a very large Hospital in a major metropolitan area. His wife had an intestinal blockage, went into surgery had it fixed and lived another 20 years.
My grandmotherâs sister was a Christian Scientist, and in ~1950, was hemorrhaging while receiving Christian Science ministrations. As my grandmother always told the story, âshe had no lipsâ, she was so anemic that there was no color difference between her lips and the rest of her face. My grandmother took her against her will to a hospital, got her blood transfusions, donated blood herself, and she lived another 40 years.
Protecting people from themselves is the most difficult thing to protect them from. They fight you and may hate you for it even if it saves their life.
Just so you know, I can explain over 50 of the symptoms on that laundry list with low nitric oxide. Some of the rest I don't know enough about the physiology behind them to be sure. Some are (to me) quite characteristic of low NO.
Goes without saying, really. : )
Now that's a nice list of vague common symptoms mixed with some possibly serious ones. I've had over 20 of them at one time or another. It's a good way to get people to think they have a disease they don't.
Of course I have most of the vision ones everyday and have my whole life (thanks genetics!) but that's beside the point.
I somewhat feel bad for these people, for the ones who had actually contracted Lyme disease. Its obvious that at least some of these folks are experiencing real symptoms probably due to neurological damage caused by the spirochete. Many people simply won't accept the fact that the damage is permanent and that there is little that can be done except coping and perhaps symptomatic treatment. Again, just as in the morgellon's crowd, I don't deny that their symptoms are real, they just refuse to accept the answer that scientific medicine provides them.
I feel badly for all of these people, those with symptoms that cannot be resolved with what medicine has to offer at this time.
I do not feel badly for the quacks and charlatans who are exploiting and enabling the vulnerable people with the symptoms.
The strangest thing about the suit against the IDSA is that the long term treating CLD physicians are actually the ones with the conflict of interest. They create a long term chronic disease treatment plan, which often benefits the doctor's pocket more than the patient. I've been treating Lyme disease for 25 years in a Lyme hyperendemic area of PA. I have found the disease to respond to a correct diagnosis, reasonable courses of antibiotics, and perhaps most importantly patient eduction. However we must recognize that we do not know enough about Lyme disease and its long term complications in some individuals. We have to acknowledge this and support patients who may have suffered long term or permanent injury from Lyme. We must also work diligently to try to establish a correct diagnosis, if we believe the symptoms are not Lyme related.
Two people in my immediate family caught lyme very early on, in the 80s. Both of them had unusual cases (my mom didn't even remember being bitten by a tick) and it took a while for both to be diagnosed. And I have to say, at the time, we all had some doubts about the diagnoses. Talk about uncertainty in medicine! The tests seemed unreliable, no one seemed to know what was going on. But both responded to treatment, so....guess it was lyme.
When I read the accounts by the CLD people, my first response is, yes, what a bunch of kooks. But I recognize their frustration - it really reminds me of what we went through 20+ years ago.
Wow - I can tell you've never walked a mile in the shoes of someone with Chronic Lyme Disease. By your definition, anyone with unexplained symptoms should just accept the "wisdom" of the IDSA and suffer for the rest of their lives because of course these wise doctors have all the answers. What a crock!
People with CLD do improve from long term courses of antibiotics and for many they are the only way they can funtion at all. Having been told after a single course of treatment that my daughter was "cured" and that further treatment was not necessary; having watched her spiral down into a state of fatigue, constant pain and cognitive disability - the only thing that saved her was finding Lyme Literate Doctors who put their licenses on the line to treat her with the only tools that they had at their disposal.
Every one of those doctors would love to find a more effective way of treating Lyme Disease - at least they are trying. They do not relegate their patients to the terrible combination of their disabling disease and the incredible indignity of being told "it must be in your head".
People with CLD do improve from long term courses of antibiotics
Prove it.
I have CLD and can PROVE thru 7 yrs of antibiotic therapy, that I improvee. I would print my med records If I could and there would be no denying without antibiotics I would be bed ridden again or dead! This ignorance is causing the suffering and death of people, children, and pets. Have an open mind and get out side of your box, get educated! This bacteria is micro, reproduces, and burrows itself in every ounce of our body. How long do u think it would take to kill every single one? I'll let u know when me and my daughter, yes, I gave it to her thru birth (I'm sure you really think I'm a KOOK now)are cured and off medication.
I went through the list and I had 26 of those symptoms. Most of them went away after I was treated for hypothyroidism.
Jane, no one is saying that these people don't experience real suffering or that it is all in their head. It's just not caused by chronic Lyme disease, and it will impossible for them to get an accurate diagnosis and treatment if they insist on CLD, even after they have been tested for it.
Hi PalMD, I would like to know you personal experience diagnosing and treating folks who have gotten Lyme years or decades ago and have been visiting doctor after doctor trying to find out what is wrong with them. I assume the number is zero. I had to stumble onto a doctor that had Lyme himself. Other wise I would still be struggling.
Also what were your early thoughts on AIDS,agent orange,gulf war syndrom and the steam boat. We may find out by the end of the year who the Lyme liars are. Merlyn
Hmm.. could the symptoms be a manifestation of chronic neuropathic pain/some sort of chronic pain syndrome? And if so, couldn't we just give the CLD folks, say, TCAs and put them in CBT? But then again, they probably wouldn't like that idea.
With tongue squarely applied to my cheek I suppose we should blame the information age for all this woo and these mutant memes. Before the advent of the Internet and global communications, there were sufficient scientists and physicians to keep most of this in check. Now with unlimited access to the public e-waves there is no way to keep them all from leaking out into the mainstream and reproducing in the fertile fields of suspicious and gullible minds. That's progress for you.
Appoligies for the long post but I found another, equally interesting list of symptoms:
This isn't a list of alleged CLD symptoms, though. These symptoms are taken from this list of alleged Morgellon's symptoms.
You CLD folks had better start examining your belly button lint. You might actually have Morgellons Syndrome!
Where are all the Morgellons sufferers? I would have thought they would be here by now...
Side question, how can I tell if my patients have Chronic Lyme Disease, fibromyalgia, or chronic fatigue syndrome?
PalMD, I asked once, I will ask again, how many patients have you treated with this disease? How many of your family members have suffered these symptoms? What research have you done personally into Lyme or are you just parroting the "kook" theory? Does it make someone a kook when they have debilitating symptoms and are trying to find a way to get rid of them? If you're so interested in "the ways patients---and we are all patients at one time or another---are deceived by charlatans" - why are you calling the patients themselves the charlatans? Being ill and desperate for treatment automatically makes a person a liar?
The problem with the ISDA guidelines is that insurance companies treat it as the gold standard of what they will pay for, resulting in doctors who refuse to TEST, DIAGNOSE, and TREAT Lyme at all, even at its EARLIEST stages. It isn't the ISDA's fault doctors misinterpret or even fail to read the entire set of guidelines. And the Lyme Bill isn't really that horrible, it just protects doctor's rights to treat Lyme with antibiotics to those patients with a clinical diagnosis of Lyme AND protects them from retaliation by authorities for prescribing those antibiotics ONLY.
http://www.cga.ct.gov/2009/FC/2009HB-06200-R000903-FC.htm
This bill is what you're afraid of? This is the product of some evil and ignorant "CLD movement?"
And Stu - way to go! The first comment! Lick coattails much?
JG, you are laboring under a couple of incorrect assumptions, but I shan't hold it against you.
I do not personally remove colon tumors, and yet I still know how to diagnose them, how they behave, and in general how to treat them. Just as important, I know how to ask and find answers to the questions.
I have never accused anyone of making up their suffering. Being wrong about the cause of the suffering doesn't diminish the suffering or make the suffer a kook or a liar---it just makes them mistaken.
"What research have you done personally into Lyme or are you just parroting the "kook" theory?"
Yet presenting peer reviewed research contrary to the conclusions of cranks never seems to have any effect. So why are you even concerning yourself with "you aren't qualified" argument?
JG, you really can't fault MDs like PalMD for practicing within the limits of their expertise. I can't fault any professional because they say they don't know how to do something. You have to take them at their word on that.
He has said multiple times that he doesn't discount the symptoms, only the explanations which don't have the kind of research and documentation behind them that every other condition he treats does.
The legislature is not the place to establish the scientific merit of the mechanisms of disease or how it is to be treated. A bunch of politicians are supposed to understand and evaluate the science?
Diarrhea AND Constipation?
"Doctor, doctor, every time I do this my arm hurts!"
Doc: "So, don't do that!"
"Doctor, Doctor, every time I drink hot cocoa I get a stabbing pain in my eye!"
Doc: "try taking the spoon out before drinking"
"I do not personally remove colon tumors, and yet I still know how to diagnose them, how they behave, and in general how to treat them."
Sure, but I think it would be better to send that patient to an oncologist, don't you?
That's all people with Lyme want, the right to see a specialist who knows how to treat them.
Such a doctor is hard to come by because the IDSA guidelines are used by insurance companies to deny those patients falling outside their cut and dry categories for treatment. Take the information IDSA gives and interpret it narrowly and poorly; that's what insurance companies have done.
People desperate for any relief will then turn to whatever idiot is selling snake urine on the corner if they promise it will cure their ills. Because why not? They can't get treatment anywhere else.
The IDSA guidelines might also be helpful if the treatment they recommended worked for everyone. The physician treating Lyme disease who replied above, for example, recognizes that healing doesn't always happen the same for every patient.
"I have never accused anyone of making up their suffering." No, but the general attitude of both of your articles is that people who think they have CLD, along with the whole idea that someone might continue to be sick after being treated, is silly and should be ridiculed. If that is not your intention, then maybe you should look at a few of the more rude comments that have been posted. Maybe those people are just taking your information and interpreting it narrowly and poorly?
Cynical assholes calling me a kook in 3...2...1...
Yes, and I have "black bile". I only want my insurance company to pay to allow me to see a bloodletter who can get my humours in balance again.
Why is that any different? Yes, medical scientists will say there's no such thing, but what do they know? My bloodletter says that's what I have, and I trust him.
I find it highly amusing that you'll come up with your own NON-scientific babble debunking Morgellons even though theres ACTUAL scientific research done by OSU that proves Morgellons isnt "delusion" or "fake". What are you going to back up YOUR claims with? Other than unbased and terribly unscientific statements?
http://www.healthsciences.okstate.edu/morgellons/docs/Wymore-position-s…
Good grief, Dan J, it's antibiotics for an infection, not maple syrup enemas and voodoo acupuncture, for crying out loud. (No offense to the SweetAss Association or pinheads.)
Dan J, I think that depends on what health care insurance you have. If the plan is good enough, it might cover bloodletting. But since blood letting was traditionally done by barbers, it probably isnât covered, it is likely considered cosmetic, like shaving or liposuction. You need to either pay for it out of pocket, get a better insurance plan, or convince the politicians of your state that humour balancing treatments such as blood letting deserves parity with medicine based on evidence and recognized standards of care. The latter probably isnât that difficult to do.
I donât think that PalMD is saying that people who have chronic symptoms are silly, or that the idea that someone could have chronic symptoms is silly. I think what he thinks is âsillyâ (and that isnât the right term, more âtragicâ in the Greek sense) is that people would think that diseases and treatments can be based upon anecdotes and a complete lack of rigorous science based diagnosis. What is âtragicâ in such circumstances is that people will go from one failed treatment to another based on anecdote after anecdote while the chorus in the background keeps singing. If you donât know what you are treating, any treatment might work. If you do know, then you know when treatment failure has occurred and can go on to the next most likely thing.
There is no other known bacteria infection that is treated by a wide variety of seemingly random antibiotics long term. All other known and documented bacterial infections succumb to antibiotics that the bacteria are susceptible to. For all other known bacterial infections, if the bacteria are resistant, then long term antibiotic treatment with the antibiotic they are resistant to is worse than useless and makes the infection worse.
If the bacteria are resistant, they need to be cultured and what they are susceptible identified. It is bad care and malpractice to treat a chronic infection with the same antibiotics without knowing that the target organism is susceptible to it.
The potential side effects of a maple syrup enema are less harmful than the potential side effects of chronic antibiotic treatment. If the target organism is not known to be susceptible to either, the antibiotic treatment is actually worse than a maple syrup enema because of the side effect profile.
A common bacterial infection replicates every 20 minutes that is 3 times an hour or 72 times a day and the medical establishment regularly treats that infection with a 10 day course of antibiotics. That is a total of 720 bacterial replication cycles.
The Lyme Spirochete replicates once every 24 hours. In many cases the medical provider does not know how long the patient has had the condition. If the Lyme has been undiagnosed or misdiagnosed for a year or two, then the symptoms are frequently misdiagnosed as ALS or MS.
It is completely logical for practitioners to treat a long term Lyme infection for the same 720 replication cycles. Treating a patient for 30 days or even 60 days would be like treating a bacterial infection for half of a day or maybe a full day. It is not enough.
720 replication cycles would be over two years of antibiotics.
A common bacterial infection replicates every 20 minutes that is 3 times an hour or 72 times a day and the medical establishment regularly treats that infection with a 10 day course of antibiotics. That is a total of 720 bacterial replication cycles.
The Lyme Spirochete replicates once every 24 hours. In many cases the medical provider does not know how long the patient has had the condition. If the Lyme has been undiagnosed or misdiagnosed for a year or two, then the symptoms are frequently misdiagnosed as ALS or MS.
It is completely logical for practitioners to treat a long term Lyme infection for the same 720 replication cycles. Treating a patient for 30 days or even 60 days would be like treating a bacterial infection for half of a day or maybe a full day. It is not enough.
720 replication cycles would be over two years of antibiotics.
For those who say that CLD doesn't exist and that they do believe people are suffering but not from CLD please explain this. I am not being sarcastic. I really would like an explanation.
I have been to 17 doctors. Too many tests to mention with NOTHING found. Yet I have had a stiff neck and headaches daily for 9 years. I used to be a triathlete and now cant go up stairs or do easy chores without knocking myself out. I have other symptoms but will leave it at that.
I have had a postive PCR test for the lyme bacteria. That alone should be enough in my mind to say CLD must exist if 9 years after my symptoms started they can still find the dna of the bacteria in my body. Add my symptoms and it makes logical diagnosis to me.
Take all my symptoms away if you want. But please explain how I can have a postive pcr for the lyme bacteria and not have CLD?
My daughter had the characteristic bulls eye rash on her arm. The spongeheads at the American University clinic told her she had ringworm and gave her an antifungal creme. She did not use the creme, but the rash went away.
After some time, she experienced drooping on one side of her face, pain in her joints, weakness in her legs, and other symptoms. The antibody test for Lyme disease was done and came back negative. The doctor told her she had fibromyalgia. (What exactly does fibrmyalgia mean beyond "it hurts when I do this"?)
We still suspected that she did have Lyme. She found a doctor who would order the Western blot test, which came back positive. According to her present doctor, she was infected with not only Lyme, but several other tick borne illnesses.
Her symptoms have responded to treatment, but she is not completely better. The antbiotics she is taking cause problems of their own, and I really wish I had some way to know for sure what the best course of action is.
I am deeply troubled by her situation, but also by the uncertainty that the controversy causes.
Here is my question. One group says the antibody test gives false negatives. The other group says that the Western blot gives false positives. It's just about impossible to culture the bacteria.
How do you tell for sure who's right?
As a developmental biologist this battle nauseates me since it flies in the face of science.
Persistence of infection would explain CLD would it not?? as well as remission-relapses despite 'ample' antibiotic treatments?
Journal of Neuroinflammation 2008, 5:40doi:10.1186/1742-2094-5-40 Persisting and Atypical forms of Borrelia burgdorferi and local inflammation in Lyme Neuroborreliosis.
This was POST antibiotic treatment!!
there are MANY more studies now proving persistence of infection and the possible reasons
-resistance
-undertreatment causing atypical and CWD forms
-tissue infiltration; intracellular infection
-antibody camouflage
-varying strains with varying susceptibilities
-other models requiring lengthy treatments ( Q fever, TB, etc)
-efflux pumps that egest antibiotics from the bacterial cells
many other spirochetal infections become harder and even impossible to treat if undertreated or misdiagnosed too long.Why would we presume this one is any different? Empirically if the symptoms are abated with further lengthier treatment then to bar the patient from such treatment is unethical. Double blinded studies are now showing such results.
CONGENITAL Lyme proof
Although the placenta was grossly and microscopically normal, silver stains demonstrated spirochetes. http://bloodjournal.hematologylibrary.org/cgi/content/full/bloodjournal…
In as early as 1985 the CDC admits to congenitally transmitted Lyme mother to baby
http://www.cdc.gov/mmwr/preview/mmwrhtml/00000569.htm
Since transplacental transmission of B. burgdorferi has been documented, it will be important to determine whether maternal infection with B. burgdorferi is associated with an increased risk of adverse pregnancy outcome.
: Pediatr Infect Dis J. 1988 Apr;7(4):286-9.
Borrelia burgdorferi in a newborn despite oral penicillin for Lyme borreliosis during pregnancy.
Ann Intern Med. 1985 Jul;103(1):67-8. Links
Maternal-fetal transmission of the Lyme disease spirochete, Borrelia burgdorferi.
its funny how if you dont WANT to see something you claim its not there and thats what many with Lyme object to. The IDSA has decided to use a scant few and less than scientifically supportable studies that are greatly flawed and yet continues to IGNORE the by now numerous, valid and refuting studies. Without explanation.
the political mess is huge and unnecessary--DO the research and report the findings and BOTH sides need to de-politicize this battle once and for all.
It might...but this has not yet been demonstrated in any validated and reproducible manner.
It's articles like this that keep us all undiagnosed. If Lyme is caught early it is treatable. But 25 years of the run around by "reputable" family doctors has left me where I am today... chronic lyme, believe it.
$400 for a lyme consultation for 3 hours of discussion and giving me the time of day, doing the proper blood work, and making me feel like a human again, and not writing in my medical records that, "my tics looked staged," is much more affordable than $400 for one single heart scan, (+ $80 for family doc visit,) that I didn't even need. Plus $300 for a stress test. Plus hundreds of dollars for b.s. that wouldn't have ever have helped me.
I have saved money by seeing my lyme doc, because my family docs told me to see a psychiatrist... doesn't that equal thousands more for treatment I don't need? Or that won't help me? My family docs never even asked about tick exposure, even though I went in for poison ivy before. Even though I live in South Eastern Pennsylvania, and grew up covered in ticks. My family docs should be the ones to have their license suspended, my family docs are the quacks. My lyme doc noticed my dry skin and tested me for a vitamin D deficiency, just from looking at me. My family docs saw me... but no vitamin D test either. Oh yeah... and my white blood cell count was through the roof. I guess my family docs wanted me to get leukemia.
+Lyme - Western Blot Test. The elisa test for lyme needs to be thrown in the trashcan, because that's where my family docs tried to throw me. The only reason I got an elisa test is because I asked for it... of course it was negative. underourskin [dot] com - Watch it.
P.T.S.D, Nightmare Disorder, RLS, ADHD, Anxiety... and much more... all gone thanks to long-term antibiotics. After years of hell.
Dyslexia, ringing in the ears, easily startled, and ADD stills lingers: Chronic Lyme
P.S. No rash... ever. Never, ever. Not when I was 5, not 10 years ago, not 5 years ago... never.
This blog is truly pathetic. These lapdog doctors can't think for themselves so they just parrot what they have been told, and childishly bleat 'woo woo' should anyone dare to contradict their brainwashing.
Your ignorance about medicine was obvious by your comparison of lyme disease to a colon tumor. How on earth is a colon tumor related to a infectious relapsing fever? You seem to think that because you can diagnose a colon tumor you can diagnose lyme disease? That's what we in the engineering world would call a logical fallacy. Your blog is overflowing with them making it embarrassingly obvious that you have little training in logical problem solving and much prefer dogma.
For all the posters commanding anyone to 'prove it', how about doing some thinking and investigation on your own instead of sitting their with your arms crossed making stupid 'prove it' demands of others. I would first suggest typing "borrelia persistence" into google and look at the substantial amount of studies that have been done proving the persistence of borrelia post-antibiotic treatment. I know its really hard, but I think you will find it rather enlightening. Is it a coincidence that most of that research is done in Europe and not in the US?
It is depressing to read the comments here by doctors that clearly show they are far more concerned about being conventionally "correct" than actually doing anyone any good. It reminds of the finance idiots who would rather lose money buying IBM stock than make money investing in not so obvious investments, since they then won't get in trouble after posting huge losses.
If a good engineer came across reports of a strange anomoly that defied explanation (ex: Morgellons) in their field, their curiosity would no doubt not be satisfied until it was thoroughly investigated and proven or determined to be false. They certainly wouldn't take the attitude of so many doctors here that seem to think that if they weren't taught it in medical school, then it can't exist. I guess you can at least be grateful that the engineers who designed the planes you fly on don't take that same ultra lazy attitude.
The more I read this blog the more frightened of hapless, ignorant doctors I have become, and wonder what will become of the medical arts in the future. Its high time we start a profession called 'medical engineers' that consist of real problem solvers and not just lapdogs.
For almost 3 years, I had progressive peripheral neuropathy. It started in my back and moved peripherally, finally affecting my entire body. A "respected, UCLA Neurologist" told me "Your neuropathy isn't progressing the way it is supposed to!" Well, excuuuuse me for having a disease process that doesn't progress the way it is supposed to. Anyways, he stopped "treating me", meaning he only wanted to give me drugs that left me barely able to function at home. Fast forward.....I have been tested for every disorder they could think of and nothing showed up. Honestly, I didn't believe I had Lyme disease. I didn't know what I had. Finally, one doctor diagnosed me with Lyme and prescribed antibiotics. The neuropathy stopped progressing.
After one year, I was taken off of antibiotics. The longer I am off of antibiotics, the the sicker I feel. I am severely fatigued. I have muscle aches. I have a feeling in my head similar to a hangover. I am unable to hold a job because I would be either calling in sick too often or I would be fired for appearing sleepy, yawning and not being able to consistently produce.
What should my doctor do now?