posted
Some say that STARI (the "lyme like" illness in the south, aka Master's Disease) is a bit less severe than Lyme, but maybe even harder to treat. It is still caused by a spirochete -- my personal opinion is that it is just another strain of borrelia. The difference is all in how the powers that be label it....
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
| IP: Logged |
posted
It all boils down to the same treatment.... and prognosis.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
My PCP was evaluating a patient. The patient was told "this is lyme like, but I don't believe it is lyme." The patient did have many positive WB bands. The physcian was correct. It was not lyme. It was brucellosis.
Not everything that looks like a tick borne illness is. It is so important to evaluate the patient as thoroughly as possible.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
In my humble opion, as timaca said Lyme like and lyme are NOT the same.
There ae many infectious diseases that have similar presentation to Lyme. Brucella and bartonella are a couple that lymies might be familiar with. Fifths diease (a parvo virus) can also mimick Lyme in both the joint and neurological problems.
As far as Lyme and neurological problems alone, there are MANY diseases that can mimick lyme.
There is also the issue of "lyme syndrome" in which a subacute Lyme infection, an infection where the symptoms of Lyme its self are minimal or non existent, but other co-resident infections are made worse by the co-resident Lyme for some reason. I suspect that there are a lot of people that are chronically sick because of this problem. Many have also speculated that this is the cause of the so called "post lyme syndrome", this EVEN FROM THE PEOPLE AT ALDF, which include datwiller and steere..... It is also something that ILADS has been saying for a long time (far longer than ALDF).
Many LLMD's will treat "lyme syndrome" not becase they have a definative diagnosis, but because they have experence with presentation of the "syndrome" that they had been able to cure or at least relieve in the past.
This is to a large degree what accounts for the wide variability of treatment. Further to this, this is why it is important for patients to be fully informed, fully understand and acknowledge that the treatment will be based on this evidence based medicine rather than a cook book, but widely accepted protocol.
I beleive that quite a few people on Lymenet suffer form "lyme like" disease or "lyme syndrome". This does not mean they are not sick, nor does it mean that they do not belong here. As anything that looks or feels like lyme should be discussed so that maybe some sense should be made of the symptoms and some commonality between cases observed.
Lyme is a complex disease in some cases but is made even more complex by the fact that the insect vector is known to carry many other pathogens, previously of which only a fraction have been known about....only to veterinary types. It is a well known fact that many animal pathogens can infect humans resutling in very odd symtoms.
The term LLMD is in fact misleading for most "LLMD's". Most LLMD's are in fact Tick Bourne disease literate MD's or I suppose TBDLMD's... not an easy abreviation. If the TBDLMD label is conveyed to describe your LLMD Dr to your family Dr rather than as an LLMD, you might get a better response... Lyme has a stigma associated with it whereas insect bourne infection does not.
Since I am on the topic, there are MANY bacterial diseases that take a long time to erradicate, if they can be irradiacted at all. Most of these are controversial ONLY in america as the rest of the world where these diseases are more prevelent it is widely accepted that long term treatment is sometimes needed. This is a odd fact that any disease that is off shore can be treated long term (like leporosy, brucella or even bartonella) but as soon as it lands in the home of free, this same disease can be cured with at most 6 weeks of anitbiotics???? I guess the forces of freedom are so srong here so as to make the drugs (that are made in many of these other countries) more powerful....
It is not really as bad i a just implied; there are guidelines out that do reccomend longer term treatment, but if one reads those guidelines the authors seem to go WAY out their way to downplay the need.
I suppose that the IDSA push to eliminate the emergence of antibiotic resistant bacteria through the overuse of antibiotics is allowed to leave a few dead and wounded patients and Dr's in its wake. From what I see in the academic medical communuty a casualty rate for any particular treatment protocol of a few percent is considered acceptable losses, for both patients AND Dr's.... At that rate, all the Lyme patients and Dr's who treat lyme with non IDSA approach can be written off with relative ease.
As a side note, a loss rate of 1 in 10,000,000 is a big problem for a nuclear power plant or airplane design. Think about it for a second, when compared to the medical acceptable loss rate there is defnatey something very wrong somewhere.
[ 17. June 2006, 04:29 PM: Message edited by: david1097 ]
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
quote:Originally posted by david1097: [quote] Since I am on the topic, there are MANY bacterial diseases that take a long time to erradicate, if they can be irradiacted at all. Most of these are controversial ONLY in america as the rest of the world where these diseases are more prevelent it is widely accepted that long term treatment is sometimes needed. This is a odd fact that any disease that is off shore can be treated long term (like leporosy, brucella or even bartonella) but as soon as it lands in the home of free, this same disease can be cured with at most 6 weeks of anitbiotics???? I guess the forces of freedom are so srong here so as to make the drugs (that are made in many of these other countries) more powerful....
Indeed!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
But what I haven't seen from IDSA is a big push to eliminate the use of long-term antibiotics for acne. Let those Lyme patients languish, but don't let my daughter get a pimple....
Posts: 1558 | From the Berkshires | Registered: Jul 2001
| IP: Logged |
posted
david1097, I find myself in agreement with much of what you said, and some of which you said, I couldn't dissagree more.
First off, the issue I take is the differences between Lyme, and Lyme Like diseases.
Lyme disease has a distint clinical picture in the signs it produces. These signs are not present in the diseases you list with the possible exception being Bartonella in that it can effect the heart, brain, and eye in a similar manner that Borrelia Burgdorferri species can.
However, that was in connection to what one may call signs, and this is a valid point.
I believe the area where your point deserves extreme credit is the clinical symptoms of different diseases. These are things like fatiuge, or flu like symptoms, where several diseases can mimic, and this includes both infectious and non infectious illness.
The major reason I wish to make this point very clear is that there is a Lyme-like disease in the southern US, and truth be told, it exists in many areas of the country, and other countries as well.
This disease produces an EM lesion identical to the lesion of Borrelia Burgdorferri sensu stricto. Also, it can affect the heart, cranial nerves, joints, eye, and nervous system in the same way.
Several forrest workers in Canada recently became ill with a Lyme Like Disease all at around the same time after participating in a tick collection research study. They have tested negative repeatedly for Borrelia Burgdorferri, but the clinical signs and symptoms are identical to one infected with Lyme Disease.
This same thing has been happening for years in the southern US, and has also been reported in South America and Austrailia.
The point that is being emphasized here is that this Lyme Like Disease is in fact Lyme disease, but is called Lyme Like for now because we have not yet isolated the particular strain of Borrelia, and therefore we have no test.
So, when we refer to Lyme-like, I think its important to emphasize that we are speaking of this Lyme disease for which the particular strain of Borrelia has not yet been identified, and when we refer to diseases which produce similar symptoms, we refer to the symptoms because Lyme is in a class of its own, and that's Borrelia and any co-infecting organisms which change the natural history of the infection from host to host.
Posts: 559 | From Cary, NC | Registered: May 2006
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Perhaps i misunderstood the cotext of the original post in terms of "Lyme like" . The context that i refer to is one in which many but not all the criteria of Lyme disease are met. This include the obvious lack of some imporant indicators which would be sufficient to allow for a definative diagnosis.
I would think that a person displaying a clear EM rash would be immiedately classified as having Lyme, not Lyme Like disease PERIOD.
Diseases such as brucella have many of the clinical signs that Lyme has. Things like remitting relapsing episodes, joint involvement, neurologiocal infection etc. however, the joint involvement is not migrating pain and thus would be considered as lyme, yet it is lyme like in many of oits presemtation. It is in this "not exact match" context that i made my posting.
In terms of variants of the lyme bacteria causing different but similar disease, I would, at least in my own mind catagorize these all as Lyme disease. {I say this because they share a significant amount of the genetic and physical strucure as the "classical " lyme bacterium. What I suspect happens with the bacteria (based on some interesting publications on in vitro grown Bb) is that the bacteria incorporates various combinations of its plasmids given differnt hosts and temperatures. In this regard, I firmly beleive that the bacteria morphs into is human state once it enters the blood stream and at that point in time, the replication clock and cycle is set. The reason i say this is that have been some reports of spousal infection in which the sytoms flare cycle occurs at exactly the same time in both members.
I would therefore expect that depedning on how many times the bacteria has been passed between host and insect as well as the body temperature of the animal and the envronmental temperature in which the insect inhabits plays a critical role in the creation of new "lyme" variants. It has even been proven that lyme produces differnt surface protiens when cultured in different media at different temperatures.
I suppose that some even more abstract concepts could be at play such as the incorporation of blebs, which some say contain plasmids, into the organisms DNA, but this is a lot harder to believe than the concept of temerpature activated genes as illuded to above.
Of course my catagorization of "it is lyme" in the above scenario does not in any way relate to how to test for such an infection. The blood tests need specific antigens to make the test work, if the organism is sufficiently different or at least the components being looked at are sufficiently different, then the test won't work. This MAY be the problem with Stari and some of the "new" Lyme like diseases. I am quite sure that a lot of the antigens overlap between Lyme and Stari, one of these has got to be the 41 Dka flagelin fragment. Keep in mind that the researches that break down these bacteria into DNA fragements DO NOT WANT TO FIND THAT IT IS VERY CLOSE TO LYME for if they do, they cannot patent the antigens and thus collect royalties for the test kits...
To a large degree, this discussion is academic in that the point I wanted to make was not that there are variants of Lyme that are not lyme (as this is very obvious) but are other infections that can look like lyme and in fact not even be close to lyme.
There are numerous OTHER diseases that can present in ways similar to lyme that are in fact not even close to lyme in terms of thier structure. This includes some viruses.
To get an idea of the magnitude of the potential problem one need only read an OLDER book on some of the more ancient diseases and some of the tropical diseases.
As one MD friend of mine once said, the period after WW2 was dominated by the "wonder drugs"... antibiotics. They could cure many of the previous diseases which where deadly prior to their arrival. He went on to say that that time is reaching its end in that all that could be cured but these drugs is being cured and the realization is now sinking in that the instant cure that these drugs produced is not universal. The wonder drug illusion is reflected in the NEWER medical texts since it is as if all the old information about persistence and relapse in bacterial infections has been unwritten... and will be forgotten
Just look at how hard it was for the aussie to convince the rest of world that many ulcers were caused by a bacterial infection of h. pylori. It took a decade, even when hard proof was in hand. This was even when the cost of treatment was not even a issue.
Now look at Lyme and other infective diseases which sometimes behave something like lyme were cost of treatmetn IS an issue... This I think is why it is such a hard fight.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Shazdancer... right you are. This is a big contradiction with the IDSA abx reduced use policy...and a very good question to as an ID who will ony limit Lyme treatment to 4 weeks (and no even likley want to see you past that time)even in a bad case.
Unfortunately I think the answer will be "tetra.. for acne has been proven to be effective".... And thus the wheel continues to spin but go nowhere...
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
posted
David, I see your point. We seem to be in agreement with our thinking on these points.
I'm especially glad that you brought up the idea of Lyme Bacterial change!
That was one of the huge problems in the Osp C vaccine.
Durring the natural infection, Osp C is produced in the gut of the tick vector, so it was theorized that if we imunize people with antibodies against Osp C, then these antibodies will travel into the feeding tick, recognize the Borrelia expressing Osp C, and kill the bacteria.
What happened next was remarkable! The bacteria evolved rather quickly. It started to express a different plasmid when the Osp C was killed, and this altered the natural infection and made it much much worse.
There was recently a study on this conducted on animals. The scary thing was that the serologic tests didn't produce enough antibodies against the infection, and the spirochete load was much higher in imunized lab subjects.
Also, there have been times when one strain of Borrelia is cultured before antimicrobial therapy, and a different strain from the same EM lession after therapy.
The complexity of the Lyme Bacterium is absolutly astounding.
I think we are only scratching the surface.
Posts: 559 | From Cary, NC | Registered: May 2006
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
You might look for some info on leptospirosis. Leptospires are know to also have this capability and in some cases can live syngergistically and asymtomatically with the host! It is also a spirocete carried by deer but spread through water....
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Stari or Mastersons disease is another form of borrelia.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/