Topic: Is it time to call this complex illness something other than LYME??
Jellybelly
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posted
I have watched the documentary "Under Our Skin" 5 times now, and am wondering if maybe we need to come up with other terms when talking about Lyme. The term Lyme carries a heavy stigma and people unfortunatly walk away, because of their misconception and what illness they have is by far worse than LYME DISEASE! How dare you suggest my MS, Lupus, ALS is Lyme????
In the UOS documentary one of the things they seemed to point to often was how important the coinfictions are and there are a lot of them. These coinfections make people much sicker than if they just had Lyme.
I think Lyme is just the tip of the iceberg, and I have an LLMD who doesn't even call it Lyme, but rather "tick born disease". I know, many of you don't like that term either, because you can get Lyme from other things than a tick, like a mosquito or biting fly. BUT, tick born disease is more accurate that using Lyme when talking about individuals who are coinficted. It is even possible to have "tick born disease" and NOT even truly have Lyme, is this not true?
Sooooooom maybe it is time to start kicking around some more "politically correct" terms to describe these multiple "bacterial infections" that we have picked up from a number of locations, like when talking abpout "cat scratch fever". Did you get it from the scratch of a cat, or the bite of the tick who bit the cat who had whtever causes CSF before it bit you! Get what I am saying?
[ 10. September 2008, 05:31 PM: Message edited by: Jellybelly ]
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Tincup
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Hey JB..
Long time, no see! Nice to see you now!
Good idea too!
I spoke to a lady in a Congressman's office the other day and she was from CT.. but was now working for a Congressman in a state that wasn't real Lyme literate.
But she sure was.
She commented that those from the Lyme, CT area REALLY don't like being famous for such a horrible disease.
It gives them a bad name. I would imagine it also drops property values and such too?
After all.. who here would purposely want to move to Lyme, CT?
Not I, said the little red hen!!!!
I'd almost rather go live in the woods! And my bet is Lyme, CT is actually a nice place. But from what I know of "Lyme"... it would be hard to convince me of that.
Maybe we can reverse the time line and go back... and call it Bumsteere's disease?
I KNOW.. that isn't the name you were looking for.. but since he dubbed it Lyme.. might want to return the favor?
But I do like your idea.. and I also think getting "Lyme" is an understatement... and ticks can give you a soup bowl full of diseases.
I just thought I'd share some comments from the Lyme, CT point of view.
Keebler
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posted
-
I say just go for the real name.
Caused by Borrelia burgdorferi (or whatever other strain) - Borreliosis or (for advanced and affecting neurogical function) neuroborreliosis.
To be more inclusive, TBD (tick-borne disease) is clearer than TBI ( as that can mean traumatic brain injury).
Unfortunately, the shorter nick name of Bb stuck with the public and the press. The good people of Lyme, CT would have preferred, I'm sure, that the real name or even "Bb" would have been used.
I will say that if I had used the real term when I first got ill that my family may have taken it more seriously.
Perhaps, as we shift to saying Bb more often, others will, too.
Hoosiers51
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I kind of agree with the name thing. I don't so much have a problem with our disease not sounding serious, but just that it implies we are ONLY dealing with bb. It sounds sort of.....dinky.
People know me as "the girl that got Lyme disease and got really sick."
And part of me wants to say to people, "ACTUALLY, it's much more complicated than that....."
A lot of us have other infections too, and not to mention all the other "complications" and syndromes that go along with just the one Lyme pathogen.
Having "Lyme" makes it sound like I am only dealing with one bacterial infection, when really, it is much more I'm juggling.
It's much more that all of us here are juggling than just that little spirochete.
In my own mind, I consider myself a victim of tick diseases, not just "Lyme."
Even more appropriate, would be "complex lyme induced disease."
But then that makes it sound like the Lyme has come and gone.
I always admired the ILADS's name-----Lyme and ASSOCIATED DISEASES society. I think at this point, that is much more accurate. Between the encephalitis, and the digestive problems, the dysautonomia.........not to mention the zillions of infections which comprise the "associated dieseases"......multiple strains of babesia, multiple strains of bartonella (so the hypothesis goes), multiple strains of erlichia....
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sixgoofykids
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I've been watching the videos on www.biotoxin.info ..... since mold, mercury toxicity, Lyme Disease, etc. all have overlapping symptoms, I think the term "Biotoxin Illness" would be appropriate.
Especially for me since I found out a huge part of my illness is likely due to mold.
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kam
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I remember this being brought up a while back.
I sometimes say Lyme and Company. But, still get that blank stare.
The label is just a tip of the iceberg.
Neuro Borreolosis (sp?) is too much for a person most of the time.
I know CFS was first called ME at first and now is usually called CFS.
I think people have more education on CFS than TBD.
Just yammering away at the keyboard here. Bottom line I feel is education.
UOS, Evans Gate (just saw the trailer on this one), Cure Unknown and other books are helping with this.
I saw where UOS will be on the Orpah RAdio show.
I am praying and wishing and hoping Dr. Oz and O take it to the TV show.
I thank all of you who have written articles in papers to help educate.
Just got a copy of an article from an email friend from Consumer Reports.
She thought I needed to know about it.
It basically is the old Infectious Diseaese belief.
Said that the guidelines most likely will not be changed as they have proof that long term abx does not help.
Nothing mentioned about what to do to help except how you dress. HA!
My email friend's husband is a forest ranger.
Ok I will stop yammering away at the keyboard now.
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Jellybelly
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Nice to see you too TC. Been really busy these days, starting a new online business AND this EBV has really slowed me down. But, I am coming back around after 2 months of antivirals, I don't feel so much like a zombie, just another 4 months to go.
I wouldn't like in Lyme for anything. It is beautiful, but so are a lot of things that can kill you. Very sad state of affairs for property owners there.
I thing this is really something that needs to be considered. Borrelia burgdorferi still is refering to Lyme, and Lyme is to narrow of an explanation. We need to start using a term that all will understand to mean "an illness that is aquired primarily from the bite of a tick and includes not just Lyme, but any number of the known and UNKOWN co-infections" .
So, let's put on our thinking caps. Figuring out how to refer to this illness in a different way, may take us a long way in getting people to stop and listen. That will in itself take us a long way in looking for a cure.
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kam
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Well...lets see. AIDS uses initials..sorry can't recall the correct term.
Perhaps we could come up with an acroynm (sp?)
I wonder how they came up with the word Cancer?
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Jellybelly
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But Tutu, borreliosis is still just refering to Lyme, not the whole possible complex
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Maybe we need to distinguish what co infection we have. Be more specific and say we have erlichia, or bartonella, etc. Many people won't even know what they are and we would have to explain that they are lyme co infections. Around here so many people get bitten but many don't get very sick (yet). The term "lyme" is tossed around so freely, yet my entire family has been, and some still are , very sick. When I say we have lyme people don't understand why we're so sick. And if we all have it we must be hypocondriacs! Karen
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lymednva
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Lymetoo said:
quote: My LLMD refers to it as "borreliosis."
He's not alone in that. My LLMD uses that term also.
That is probably what it should be called. How do we go about changing the commonly used Lyme to Borreliosis?
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Jellybelly
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Karen, that is pretty much it in a nutshell. Lyme has been tossed around so freely, and the masses think we are nuts. YetLyme explains just a tiny fraction of our illness in the vast majority of cases.
Something broader is needed when describing pathogens we have acquired in most, no all cases from a tick.
Just a side note, my mom has a pathogen that plays havoc in a very simialar way only she got this one from a sea urchin sting 33 years ago, and has only recently been found to be a culprit in some of her problems, ON TOP OF LYME.
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Jellybelly
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Lymjednva, again Borreliosis=Lyme which is only a small factor of the equation.
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Just an FYI- In Europe, or Germany to be more precise, they also refer to it as "Borreliosis". (I speak German).
I'm okay with this al well, even though it doesn't cover all of the infections. We can elaborate if they ask...in the mean time, it would be great not to call it "lyme".
Its not green, we're not in CT, and it says nothing. Its a very counter-productive name. An unlike CFS, Fibromyalgia, etc, Borreliosis describes the cause of the illness, not the symptoms.
Lymeorsomething
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Lyme can be big and bad all by itself minus the co's. In fact, scientists are researching what they call the "common strain" of lyme which has been shown to be highly virulent and hard to treat.
Regarding the name, it's customary in science to base names on the discoverer and/or associated place names. In this case, Wily discovered it and Lyme, CT created a lot of early focus on the disease (even though it was around a long time) because of an explosion of outbreaks there. Many times these names mean nothing.
Syphilis comes from a poem Syphilis Sive Morbus Gallicus (latin for Syphilis or the French Disease.) You can't go crazy about names just cures....
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sometimesdilly
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can't contribute anything to dreaming up a new name.
for myself, when i have to bring it up to personal conversations of whatever sort, i never introduce the subject using the word Lyme at all.
I say I have encephalitis (THAT word registers) and helpfully explain that means my brain is chronically swollen, which has caused brain damage that i sure do hope is reversible.
AFTER i have laid the groundwork for making it impossible for anyone to dismiss what i am telling them, or if the brave few have asked me directly, do i explain that I was bitten by tick that gave me Lyme disease as well as other diseases that no current tests can yet diagnosis with any accuracy.
This approach is highly effective, especially for educating folks that Lyme and Co's are deadly serious diseases.
Maybe there is a larger application to this approach that somehow addresses the problem without a name change?
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Lymeorsomething
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I'm not one to burden people with my suffering, but if people ask I tell them I have lyme disease. I don't care what they think. I only care that my doc believes and that I am being treated appropriately.
The name isn't significant. More research will ultimately help rank this disease justly in the medical community.
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Tracy9
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I love Hoosier's "complex lyme induced disease." But "CLIDS" does sound like it might actually be short for chlamydia....
How about if we just call it "The Willies" in honor of Mr. Burgdorferi himself?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
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Lyme Disease is the correct term if you ignore the box that Steere put on the illness. We know that definitions in disease processes aren't and should not be dictated by what the researcher thinks the illness should be doing, but by rather what the infection is doing, and then thus re-defining the infection under those terms.
What was discovered in Lyme Connecticut in 1976 and 1977 wasn't just borrelia burdorferi, as is clearly representative of the patient profiles. Steere claims it was swollen knees(arthritis) plaguing these children, the the further time went on, the illness began to include Cardiac symptoms when cardiologists began examining the patients. Then as time went on, Neurologists began to see neurological symptoms including cranial nerve involvement and a form of meningitis, then, more and more -- and the definitions expanded. But what are they expanding on? It's not Bb alone, as is evidence by the growing literature.
Think about it like this: Steere and company considered a bacterial infection, when patients weren't responding to antibiotics in 1977 thru 1981, they reconsidered their stance, and thought perhaps it was a viral infection instead and so they took that route. When it was confirmed in 1982 that Borrelia Burgdorferi was the causitive agent of Lyme Disease based on their evidence, they suddenly had a change of heart and began testing antibiotics again on patients, everyone shouted from the rooftops, but why? When patients were given 2-4 weeks of antibiotics, they only noted whether the major manifestations disappeared. If patients remained sick with other symptoms, they called the case cured? If the rash, the swollen knees, or facial paralysis disappeared, and the infection couldn't be cultured -- it was "solved." How can that be, when patients had ongoing multisystem symptoms? Borrelia burgdorferi is "not" the sole cause of what was causing the vast array of multi-systemic and multi-manifestations of the illness of all the patients in the collective group in Connecticut in 1976 and 1977.
Lyme Disease thus is a general term that encapsulates "all" the patients, with early manifestations, secondary manifestations and late manifestations, including chronic fatigue, headaches, muscles pains and the remaining "Post Lyme Syndrome" category. It includes not only the patients Steere claimed were cured, but those who had very serious symptoms, which he called "Late minor manifestations." Are these manifestations persistent infection alone? The evidence suggests yes, and yet as time accumulates, so does the evidence that persistence involves more than Lyme in a vast portion of the cases.
See the problem isn't the disease, it's the definitions and box that academics have tried to impose on the illnesses which are affecting people with Lyme Disease and associated diseases.
Lyme disease should infact represent the entire complex of infections which have evolved together within ticks for millenia, but because Steere incorrectly identified patients and allowed his own personal bias to infection the data, we came to the controversy we currently have.
These infections work together as they infect each host, this is not a single isolated infection if you look back on the literature. Think of it a bit like the Military. We call the Army the Military. We call the air-force the Military. We call the Marines, the Military.
Lyme alone can be a crippling and serious infection, but how do we know they just have borrelia burgdorferi? The more we learn, the more we're finding it's a complex, with poor testing available for the contributary infections.
[ 10. September 2008, 10:07 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Lymeorsomething
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I don't completely buy that. Syphilis causes significant issues on its own. Lyme is syphilis without the fun (most of the time).
Lyme is a "smarter" syphilis of sorts. I think co's of varying combos create additional burden to the host but I think lyme--especially the right strain paired with a certain genetic arrangement in the host--can cause complex disease.
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glm1111
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Why aren't the LLMDS paying any attention to FILARIAL WORMS since they are what Burgdorfer found first in the ticks and as an aside found the spirochetes?
I really believe that parasites and worms are a MAJOR part of this disease. This is clearly shown on the lymephotos site and what I and many others have expelled.
I don't think our Lyme disease is any different than anyone elses. We could then name it PARAFINALIA.
Sorry, sometimes I have a bizarre sense of humor. But I am serious about the parasite thing.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Lymeorsomething
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ha that's maybe the best one
still wondering if my floaters are filarial worms???
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Jellybelly
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I have had these thoughts rolling around in my head for some time. Having seen UOS, it has really gotten me thinking.
There is one LLMD in the movie that says, Lyme patients are sicker when they are coinfected. He is also not so sure that all of these other coinfections were a part of the picture 15-20 years ago.
Most all of the LLMDs seem to agree that being coinfected makes for a sicker patient, and likely explains why there is so much diversity in the severity of illness amongst us.
I personally find when trying to help educate people about Lyme, and I use the word Lyme, I either hit a wall or the door slams shut. You may say who cares what people think, but the more people that have the correct information, the sooner we will have some really hard core research and possibly a cure.
Do you realize most of the the best known LLMDs on the east side are closing up shop, because the political climate for treating LYME has gotten so bad. How is that when we are supposed to be making headway?? Maybe they are moving to the west coast. Some patients have even been told to not use the word Lyme when making doc appts.
There is a HUGE Lyme stigma, and broadening our vocabulary may help some to swallow the pill a bit easier. This is complex, and the word Lyme really narrows and limits.
Lyme may just be the place it was discovered, but Lyme does not cover, Babesia, Erlichia, or any of the other 8-10 things mentioned in UOS when bitten by a tick.
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METALLlC BLUE
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Vector Borne illness Complex or VBIC is perhaps the best overall broad-spectrum term, but don't expect people to know what it is unless you explain it from your specific case.
It encapsulates the diversity of associated diseases, as well as the broad spectrum of carriers beyond ticks. However, when you try to go this far out past the species, genus, and into areas involving multisystem infections with individual names, multiple vectors, and multiple bacterial, viral, parasitic agents -- it's going to make it hard to embrace them all in a cute little wrapped package that people can remember, primarily because that means malaria, Avian Bird Flu, West Nile Fever, and every other vector born infection is included."
Had Steere not had his head up his *** (And still today), we might understand that Lyme Disease itself would have been sufficient in encapsulating the broad diversity of multi-infectious agents co-infecting patients that Dr. Jones was seeing in the early 1970's. See, Borrelia Burgdorferi is responsible for "some" of the systemic and persistent symptoms Steere saw. Clearly people were very sick, but he was likely also seeing Babesia, Bartonella, and other co-infecting diseases (After all, he didn't know what he was seeing, he only knew it was a tick transmitting illness, he didn't know anything else until 1982) and other agents co-mingling. It wasn't until the mid 90's when most of the other co-infections were discovered under a microscope, excluding Babesia which had been known previously. It is unreasonable to think these infections just showed up one day, unless you enjoy conspiracy theory. It is far more reasonable to assume they were always present, but that there were less people living in this area, thus less infections, and that climate changes have merely worsened an existing problem.
When I explain to people that I am ill, I tell them I have "Lyme Disease" a multisystem Lyme Disease complex with associated infections (Naming the individual infections babesia, mycoplasma or a BLO type agent).
With such a poor understanding, talking to a laymen about this will likely not yield anything of value unless you explain the dynamics briefly about vectors (ticks, mosquitoes etc), how research is evolving to include other vectors, and that multiple infections are transmitted by these vectors(ticks, mosquitoes, etc), and thus A single bite can transmit multiple infections to a single host (Human) leading to dynamic complex disease processes.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Lymeorsomething
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I understand and appreciate what everyone is saying but I think if you set out to broaden terminology you are in effect obscuring the disease even more to the point where it will become indecipherable like CFS.
There are still intangibles with the lyme disease process and with co's but we also know some of the specific offenders: Bb, babesia, erlichia, bartonella, EBV, HHV-6, etc.
So do we really want to dismantle the specifics and start calling things a swamp? I have a swamp of infections.
What do you do with the viral elements?
Why not just say I have lyme and bartonella? Or I have lyme and babesia?
Immune response can also be unique to the individual.
Umbrellas are only good in the rain. We don't want all this stuff under one umbrella. It just prolongs the mystery.
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adamm
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It's also time to start acknowledging that at least some of these
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