View Full Version : Visiting physician sheds new light on Lyme disease
http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/
that's been posted already. can't forget that doctor's name.
ScareBear
07-23-2017, 20:03
that's been posted already. can't forget that doctor's name.
It seems so....odd that this would take place at "Grand Rounds" on Martha's Vinyard. MV has maybe 15k residents, almost all of whom are so freaking wealthy that they would only be at Vinyard Hospital long enough for the helicopter to take them to Boston. Seriously. MVH has....25 beds. Grand Rounds in a 25 bed hospital...it's enough to make you bust a suture laughing....
Now, if she had pulled this at Mass General....considering the CDC rejects both her treatment and pathology "theories", as do the vast majority of infectious disease specialists, I doubt she would have received as warm a reception as she did at the world famous MVH....she's news because she has unproven "theories" that people who suffer from the disease want to believe in. Like cancer patients want to believe Laetrile is a thing. Or coffee enemas...
Note that she boasts herself a "patient advocate". That is NOT what a real medical researcher refers to themselves as.
Ah, but she is entitled to call herself anything she pleases. Woe be unto anyone who says otherwise.
"Know what I mean Vern"
Wayne
Sent from my iPhone using Tapatalk
Ah, but she is entitled to call herself anything she pleases. Woe be unto anyone who says otherwise.
You mean like:
Attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Charlestown (SRH)
No. I mean like "patient advocate".
Does Harvard grant advanced degrees as a patient advocate?
Wayne
Sent from my iPhone using Tapatalk
Worth reading. I believe there is such a thing as "chronic Lyme" inasmuch as Lyme is a constellation of disease agents and that they often linger in the body for a long time. I have a lot of respect for this disease, from personal experience and a close non-hiking friend. Read the book Sierra Noir for a forest ranger's account of chronic Lyme.
TexasBob
07-24-2017, 09:28
Worth reading. I believe there is such a thing as "chronic Lyme" inasmuch as Lyme is a constellation of disease agents and that they often linger in the body for a long time. I have a lot of respect for this disease, from personal experience and a close non-hiking friend. Read the book Sierra Noir for a forest ranger's account of chronic Lyme.
Are you saying that there are bacteria and/or viruses other than borrelia burgdorfi that cause Lyme disease? Can you share your sources for this information?
Are you saying that there are bacteria and/or viruses other than borrelia burgdorfi that cause Lyme disease? Can you share your sources for this information?
Ok, let me rephrase that. Lyme is one of many tick-borne diseases. And Lyme itself can manifest in many ways with a wide range of symptoms.
rocketsocks
07-24-2017, 10:22
Ok, let me rephrase that. Lyme is one of many tick-borne diseases. And Lyme itself can manifest in many ways with a wide range of symptoms.yup, all depends on where those pesky spirochetes set up shop, lungs, heart, brain...
One Half
07-24-2017, 20:48
The CDC is so against recognizing Lyme and all it's complications I have a friend whose sister is having to go to Germany to get proper treatment. The MA governor just rejected a bill that would define CLD as a "disease and pre-existing condition" meaning insurance companies would have to cover long term treatment. I have a friend who has been battling Lyme for probably a decade or more. Her diagnosis was delayed for years because she had to seek out diagnosis to get the test "that isn't usually performed" done.
Time Zone
07-24-2017, 21:30
Worth reading:
https://sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/
ScareBear
07-25-2017, 07:32
Worth reading:
https://sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/
Yep.
Again, people who are sick are desperate for a cure. Something very odd about this MD's creds....I don't see anywhere that she is a board-certified infectious disease specialist. She appears to be a board-certified internist or she wouldn't be a Harvard attending MD. But, she doesn't seem to have the sub-specialty. Probably because she would be booted out by the Society for her whack-a-doodle "theories". She even admits she is "new" to "this". If it were me, I'd run from her and her clinic like my hair was on fire...straight to the Mayo...
There is a reason your insurance doesn't cover "chronic Lyme disease"....the reason? It's not a real thing...
Then how 'bout this?:
https://www.nytimes.com/2017/07/24/health/ticks-disease-united-states.html
ScareBear
07-25-2017, 08:39
Then how 'bout this?:
https://www.nytimes.com/2017/07/24/health/ticks-disease-united-states.html
This is accurate. There is more than one tick-born disease. Some are bacterial, like Lyme, and some are viral, like Bourbon and Heartland. As ticks populate new regions, it is only natural that they will acquire the local pathogens.
I'd be a ton more worried about Bourbon and Heartland. Bourbon just claimed the life of a State Park employee in Missouri who contracted it at the State Park. Bourbon and Heartland are untreatable virus. You will either get better or you will die. Bourbon seems to have an alarmingly high morbidity rate in humans. It makes Lyme and RMSF look like a head cold....
There is a reason your insurance doesn't cover "chronic Lyme disease"....the reason? It's not a real thing...
I see wisdom in what you say, but must admit I am now more confused than ever.
Definitions can be tricky.
If there is no such thing as "chronic Lyme disease", does that mean all cases are acute and curable-- or just go away by themselves? If so, that is great news.
If that is in fact the case, does the acute case of Lyme disease leave any damage in its wake once it is "gone"?
Perhaps my confusion is because that I am thinking of "chronic" as an adjective, whereas others I thinking of it a discrete diagnosis.
In my experience, physicians are all over the map with tick bites.
I was once prescribed a prophylactic (2 pills) for a tick bite under circumstances that were aligned with one possible approach recommended by the CDC's 2006 recommendations.
A family member was recently prescribed (by a different physician) a full 2-week course of Doxy for an embedded tick, without any specific indication or tests of infection.
I mention that not to open debate as to whether or not their Rx was appropriate (I have my doubts) but just to say that the treatment one gets or not will depend as much on the individual Doctor, than anything published by the CDC or other less authoritative group.
Yup, more confused than ever-- but I now have multiple tick removal kits and magnifiers (car trunk, with pack and home) given the stakes.
TexasBob
07-25-2017, 17:16
I see wisdom in what you say, but must admit I am now more confused than ever.
If there is no such thing as "chronic Lyme disease", does that mean all cases are acute and curable-- or just go away by themselves? If so, that is great news.
If that is in fact the case, does the acute case of Lyme disease leave any damage in its wake once it is "gone"?
Perhaps my confusion is because that I am thinking of "chronic" as an adjective, whereas others I thinking of it a discrete diagnosis. ..........
Acute and chronic are terms that relate to time. Acute means something that just happened, chronic means something that is long term and on going. I think what the first article is getting at is that "chronic Lyme disease" is not a long term on going infection from the Lyme bacteria. I believe that the author is postulating is that the original Lyme infection was treated and is gone but another secondary problem that was triggered by the Lyme disease is the ongoing problem in those folks who have "chronic Lyme disease" symptoms. I don't believe he is saying there is nothing wrong with people who have "chronic Lyme disease" it just isn't Lyme disease any more but it is something else as a result of the Lyme disease.
I'm sure this is the doctor who practices in Boston who is treating a friend of mines son. At 14 he was bitten by a tick, showed the typical rash, got the typical treatment and almost died in the hospital. It took him 5 years to recover to an almost normal life. Oh, and insurance doesn't cover most of the treatments. I know they've spent over $200,000.
ScareBear
07-25-2017, 22:02
I'm sure this is the doctor who practices in Boston who is treating a friend of mines son. At 14 he was bitten by a tick, showed the typical rash, got the typical treatment and almost died in the hospital. It took him 5 years to recover to an almost normal life. Oh, and insurance doesn't cover most of the treatments. I know they've spent over $200,000.
If the "treatments" involved long-term antibiotics, it's quackery. The bacteria that causes Lyme is killed by the antibiotics and the kill is confirmed with the lack of positive test results. If the bacteria is present, but the disease is in latent stage, it will still show positive, because the bacteria is present even though latent. . The lack of bacteria means no more Lyme disease. Period. What you have though is the destruction left in the wake of the bacteria. Which is likely no more treatable than the destruction left in the wake of TB bacteria or Staph bacteria or Syphilis spirochetes. Or the Polio virus. Any long-term improvement is likely in spite of treatment, not due to it. If you want to think of spirochete bacteria and how they work, look at syphilis. The problem really, as I see it, is that many people get bitten and don't know it. Or get bit and don't get the bullseye. Then, Lyme goes into a long-term process that permanently destroys things and permanently damages the autoimmune system. It is the failure to treat Lyme EARLY that is likely the culprit for the devastating symptoms that persist in some patients. Much like syphilis. Treat it at first symptom or suspicion of exposure, no issue. Wait until it passes it's latency period and becomes later active for a long period and you have horrific permanent damage and eventually death. It's what killed Al Capone...
Also, most people, doctors included, tend not to worry about concurrent infection from the same tick of different pathogen(s). Like a tick containing BOTH bacterial and viral pathogens. It is not uncommon. You look for Lyme and find it, you tend not to keep looking....
Again, if you want a tick-borne disease that is scary as hell, it isn't Lyme. It's Bourbon or Heartland. They are the most devastating tick-borne diseases known to man and are present and growing in the Midwest, especially Missouri. Again, these two have NO treatment. You either get better or you don't. If you don't, you die. Period. Apparently the mortality rate may be as high as 40 or 50 percent...
Sorry for your friend's son's problems. Glad he experienced improvement.
Interesting discussion.
I expect I am not alone in having interpreted "there is no such thing as chronic Lyme disease" to have meant "the long-term symptoms people are reporting are not caused by ticks". How much more clear it would it have been for the CDC to add the following to their statement regarding chronic Lyme disease:
While the CDC has determined that chronic Lyme disease is a myth, it is important to also recognize that the CDC understands that:
Lyme disease can have a devastating impact
This impact can persist for years -- or even a lifetime
The adverse outcomes felt by patients are very real, and persist even after the patient has been cured of lyme disease (which is a simple and straight forward process)
The CDC cannot recommend any treatment to address persistent symptoms
Or have I missed something?
TexasBob
07-26-2017, 07:06
I think that a new name for long term problems after Lyme disease might help with the confusion. That way you separate the initial Lyme infection from the long term problems that a few people have after the initial infection is cured. Rather than call the long term problems "chronic Lyme disease" maybe something like "post Lyme syndrome" would be better.
rocketsocks
07-26-2017, 07:29
I think that a new name for long term problems after Lyme disease might help with the confusion. That way you separate the initial Lyme infection from the long term problems that a few people have after the initial infection is cured. Rather than call the long term problems "chronic Lyme disease" maybe something like "post Lyme syndrome" would be better.non-specified arthalogies
While I'm not necessarily recommending it to anyone else, I made a conscious decision to be my own doctor when I thru-hiked, bringing an ample supply of doxycycline and amoxicillin with me.
Important line from the article.....
“Don’t don’t squeeze the belly of the tick, it will inject the bacteria into your bloodstream. Do not use oils; it can make the tick vomit the bacteria into the bloodstream. If the tick is deeply embedded, go to the doctor.”
I carry fine tipped tweezers for this purpose. The tweezers on the swiss army knives tend to squeeze a tick's body. Grasp the tick by its mouth parts from the side with fine tipped tweezers so none of the tweezer parts are over the tick's body. Gently pull the tick away from the body so that the mouth parts come loose from the skin.
https://www.cdc.gov/ticks/removing_a_tick.html
I think that a new name for long term problems after Lyme disease might help with the confusion. That way you separate the initial Lyme infection from the long term problems that a few people have after the initial infection is cured. Rather than call the long term problems "chronic Lyme disease" maybe something like "post Lyme syndrome" would be better.
If one is not aware of being infected, does Lyme Disease go away by itself?
No, right?
That being the case, couldn't a person who is diagnosed with Lyme disease weeks or months after being infected not only test positive (keeping in mind the limits to those tests) for Lyme, and also exhibit all the horrible manifistations of your "post Lyme syndrome" at the same time?
The problem there would be the standard treatment for his Lyme disease could be 100% successful, but not do a darn thing to alleviate the patient's suffering.
Truely a real life example of the old saying "The operation was a success, but the patient died".
More confused on this then ever.
Many years ago I had Lyme disease twice. I recall the mother of all headaches and flu-like symptoms the first time. The second time less so. I got nailed in the groin area with the classic black dot and red ring marking. The second time was under my arm pit with less of a visual clue. I'm happy to say I have no long term effectsssssssss
TexasBob
07-26-2017, 12:58
If one is not aware of being infected, does Lyme Disease go away by itself?
No, right?
That being the case, couldn't a person who is diagnosed with Lyme disease weeks or months after being infected not only test positive (keeping in mind the limits to those tests) for Lyme, and also exhibit all the horrible manifistations of your "post Lyme syndrome" at the same time?
The problem there would be the standard treatment for his Lyme disease could be 100% successful, but not do a darn thing to alleviate the patient's suffering.
Truely a real life example of the old saying "The operation was a success, but the patient died".
More confused on this then ever.
I can't answer those questions for you. I would like to know what percentage of people have lingering problems after being treated for Lyme.
I can't answer those questions for you. I would like to know what percentage of people have lingering problems after being treated for Lyme.
A neighbor and friend of mine. Treated for Lyme but apparently the treatment wasn't thorough enough. Consequently has been undergoing a further round of treatment that will have spanned nearly a year before it's done.
ScareBear
07-26-2017, 16:47
A neighbor and friend of mine. Treated for Lyme but apparently the treatment wasn't thorough enough. Consequently has been undergoing a further round of treatment that will have spanned nearly a year before it's done.
Yeah. No. That's not how it works. The longest course of antibiotics for Lyme bacteria infection is 2 weeks although some would argue 4 weeks. Beyond that you are just harming the body by suppressing the immune system and leaving the body open to any number of bad bacterial infections. You will have killed off all the good bacteria in the gut and will likely develop C.Diff. as a result. C.Diff is permanent, contagious and sucky. Unless you like diarrhea...
If your friend is testing negative for the bacteria yet still receiving antibiotics, he is treating a non-existent infection and his doctor is harming him. I'd run screaming to the Medical Board and a new doctor ASAP.
There are other bad things that happen with a year-long course of antibiotics for ANYTHING. Buy, doxycycline in anything but harmless and benign.
There was a prior question about what happens when you don't treat Lyme. Does it go away? The answer is clearly NO. Just like syphilis. The problem is, by the time you get in there to kill the spirochetes months or years later, you are done for. The damage has been done and it is irreversible. Just. Like. Syphilis. Spirochetes. Nasty bacteria.
Again, Lyme is a bother, but Bourbon and Heartland are far far far far far worse and should be a far bigger concern than it is currently.
PS, my friend is a woman, a recently retired nurse. I don't know the details of her current treatment plan. I do know that her ailment is serious.
Some things that trouble me:
Could there be a political and/or public policy reason behind the CDCs aversion to antibiotics- we all know what might be good for an individual might well be harmful for the population at large
The CDC's recommendations were written in 2006 -- has nothing been learned since that might change or even just "fine tune" them?
[*=1]WRT conditions they agree may merit a prophylactic course (one or two pills)
[*=1]WRT the finding that ticks do not transmit Lyme (ever) within the first 24 - 36 hours of attachment
[*=1]WRT test reliability -- false negatives and false positives -- and how that should impact treatment
The test reliability is a particular interest. Any thoughts on that? I think they have gotten better, but I could see a physician not bothering to test in an area where Lyme is prevalent -- simply because "no does not always mean no".
As for the deadly tick bourn diseases, I get the stakes, but Lyme is such an every day reality -- and any of us could miss a tick bite until the damage is irreversible (at least in the minds of many smart people like Scarebear) -- that will remain my biggest conspcern for now.
rocketsocks
07-26-2017, 20:17
I think one thing that fuels the conspiracy therorists, is at one point there was a viable vaccine, and now there isn't...why?
ScareBear
07-26-2017, 21:00
I think one thing that fuels the conspiracy therorists, is at one point there was a viable vaccine, and now there isn't...why?
Because of vaccine conspiracy theorists. And personal injury attorneys. Seriously.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/
rocketsocks
07-26-2017, 23:15
Because of vaccine conspiracy theorists. And personal injury attorneys. Seriously.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870557/...and media witch hunts.
TexasBob
07-27-2017, 10:35
Some things that trouble me:
Could there be a political and/or public policy reason behind the CDCs aversion to antibiotics- we all know what might be good for an individual might well be harmful for the population at large
The CDC's recommendations were written in 2006 -- has nothing been learned since that might change or even just "fine tune" them?.......
The CDC's recommendations are based on the best available scientific evidence.
TexasBob
07-27-2017, 10:38
I think one thing that fuels the conspiracy therorists, is at one point there was a viable vaccine, and now there isn't...why?
Because of vaccine conspiracy theorists. And personal injury attorneys. Seriously........
It always surprises me when people start looking for some conspiracy to explain what they don't understand. In the middle ages people blamed what they didn't understand on witchcraft or evil spirits. It seems the modern equivalent is the conspiracy theory.
No conspiracy from what I can see. I have limited sympathy either for big Pharma or for ambulance chasers, or the media telling only half the story. There were some adverse effects, and lawyers and media took notice. All parties seeking to profit. Consequently, SmithKline decided that it just wasn't worth trying to market the stuff any more.
Here's a link to a decent, objective article about the marketing of vaccines in general -- http://content.healthaffairs.org/content/24/3/622.full
rocketsocks
07-27-2017, 11:06
No conspiracy from what I can see. I have limited sympathy either for big Pharma or for ambulance chasers, or the media telling only half the story. There were some adverse effects, and lawyers and media took notice. All parties seeking to profit. Consequently, SmithKline decided that it just wasn't worth trying to market the stuff any more.
Here's a link to a decent, objective article about the marketing of vaccines in general -- http://content.healthaffairs.org/content/24/3/622.fullthis all day