Something very interesting to all of us was what the doctor said about the term "Chronic Lyme". He said we are not calling it Chronic Lyme anymore.
It is now going to be called "Chronic Inflamation Disease" because of the controversy with the IDSA. I also noticed he did not check Lyme disease on my paperwork. He checked several other things that cover symptoms.
So, there might be a name change in the future offing. Just my opinion based on what he told me.
I asked him about his ABC Primetime interview. He said it was very short. There was a blizzard going on at the time and the show producer was nervous about flying out.
So the all day filming stint was reduced to an hour and a half. He doesn't know yet when it will air. The IDSA interview is still pending as the doc they are planning to interview was unavailable or something to that affect. Hmmmm But he did say that they will get their say in things.
Needs to be fair and balanced. UhHuh.
Thanks all!
Posted by Aniek (Member # 5374) on :
Possible that he just means as far as insurance goes, calling it something besides Lyme. Many doctors know how to play the diagnosis code game to ensure coverage by insurance companies.
I can't imagine ILADS dropping the term Lyme.
Posted by sickandtiredofbeingsandt (Member # 10189) on :
Hi Aniek, Not the term "Lyme" for the initial infection but the long term chronic type that the IDSA has such a hard time believing exists.
Thanks!
Posted by MagicAcorn (Member # 8786) on :
sickandtiredofbeingsandt
On your other post My Visit With Dr. M you said he diagnosed you with Borrelia (which is what I'd prefer it be called) and Babs.
So do you have Chronic Inflamation Disease or Borrelia? Or is Borrelia going to be the term now used for an acute infection of Lyme, and Chronic Inflamation disease for the chronic cases. I'm confused, sorry.
Posted by Areneli (Member # 6740) on :
Seems like another name for post-Lyme syndrom to me.
Plus they may want to see some inflammation markers such as sedimation rate up to diagnose it.
For example my inflammation markers are normal. Am I out of luck?
[ 17. January 2007, 09:00 PM: Message edited by: Areneli ]
Posted by northstar (Member # 7911) on :
Inflammation? Like steroids and immune suppressors, or aspirin?
Me?
I have an infection that my immune system cant get a grip on.
(but I do understand the necessity of using the other codes)
How about infection of unknown origin? We can probably get pills for that.
Northstar
Posted by sickandtiredofbeingsandt (Member # 10189) on :
MagicAcorn, From what I understood him to say, Chronic Lyme Disease, which is Borrelia and the co-infections that have gone long term, is now going to be called Chronic Inflamation Disease.
In my other post, I mean it to say that he says I have Borrelia and Babesia and because I've had it for so long, it is called Chronic Inflamation Disease instead of Chronic Lyme. It all has to do with the controversy with the IDSA. It's all symantics (is that the right word?), I guess.
Posted by sickandtiredofbeingsandt (Member # 10189) on :
Northstar, I was wondering about the inflamation part myself. I didn't ask a lot of questions about it at the time because he was in the process of doing the physical exam when he told me this and asking me to do certain things for the neuro exam at the same time. I can't multi-task anymore.
So, I really didn't get into a lot of the details. Maybe ILADS has something written about it? Don't know.
NO steroids. They told me that much.
Posted by Lymetoo (Member # 743) on :
Sounds stupid to me.
Posted by stymielymie (Member # 10044) on :
i think i'm now suffering from chronic acorn disease. thats medical code 2009.8576.9345.9123.8432.001 002 is chronic squirrel disease. don't mix up the numbers when the doctors fills in the insurance form. these are new codes as of yesterday and also added was chronic abusive doctor syndrome 4572.89349586876.9234858568.001 and chronic abused patient disease .002
now put thos ein your pot pipe and smoke them!!!!
docdave Posted by Greatcod (Member # 7002) on :
Fits right in with in with the arguement that antibiotics "work" for us because of their anti-inflamatory properties. Not good for us if the idea is to move away from the idea of chronic infection.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Greatcod: Fits right in with in with the arguement that antibiotics "work" for us because of their anti-inflamatory properties. Not good for us if the idea is to move away from the idea of chronic infection.
Right. How do we get abx for "inflammation"?
Posted by Marnie (Member # 773) on :
Oh?
Chronic Lyme borreliosis (CLB) can present not only in different organs but also in different patterns. Although many theories exist about the mechanisms leading to CLB, it is known that viable Borrelia burgdorferi can persist for decades and cause late skin manifestations of acroderma-titis chronica atrophicans (ACA).
Thus, the immunopathogenetic findings in ACA can serve as a model for studying the chronic course of Lyme borreliosis.
Recent findings indicate that the most important cell for antigen presentation,
***the epidermal Langerhans cell (LC), is invaded by B. burgdorferi in early Lyme borreliosis.***
Therefore, LCs were stained immunohistochemically with different markers to investigate their functional activity. Numbers of CD1a[+] LCs were reduced in erythema migrans but normal or slightly elevated in ACA.
In both diseases there was also a marked downregulation of major histocompatibility complex class II molecules on LCs, as measured by staining of human leukocyte antigen DR. This phenomenon might be a mechanism that protects against the presentation of autoantigens and may be the cause of the impaired capacity of LCs to eliminate B. burgdorferi antigens, thus explaining why CLB is chronic
Now...let's talk about how to impact those infected cells...it comes from pancreatic cancer research.
The Isles of Langerhans in the pancreas produce insulin which ACTIVATES PFK...one enzyme Bb is "dependent on".
There is some truth to "take an aspirin and see me in the morning". Really.
See my Nitric oxide and ASA post.
Posted by 5dana8 (Member # 7935) on :
think i'm now suffering from chronic acorn disease. thats medical code 2009.8576.9345.9123.8432.001 002 is chronic squirrel Disease
docdave ================================================= Thanks docdav I really needed a smile today
[ 17. January 2007, 07:58 PM: Message edited by: 5dana8 ]
Posted by Kayda (Member # 10565) on :
Marnie,
English, please?
Thanks!
Kayda
Posted by northstar (Member # 7911) on :
Marnie,
In both diseases there was also a marked downregulation of major histocompatibility complex class II molecules on LCs, as measured by staining of human leukocyte antigen DR.
This phenomenon might be a mechanism that protects against the presentation of autoantigens and may be the cause of the impaired capacity of LCs to eliminate B. burgdorferi antigens, thus explaining why CLB is chronic
The second paragraph I feel is speculative, and not fact.
Northstar
Posted by Dave6002 (Member # 9064) on :
"Chronic Inflammation Disease" is too ambiguous, It will not be a scientific name for a disease.
Even Dr. Steere will not accept it.
Lyme disease seems still the best one so far.
[ 17. January 2007, 09:30 PM: Message edited by: Dave6002 ]
Posted by sickandtiredofbeingsandt (Member # 10189) on :
I don't disagree with you. I am just relating what I was told.
Chronic Fatigue Syndrome is rather ambiquous as well. Then they changed it to CFIDS. So who knows what evolutions this might make. Maybe none.
But I believe it's some sort of compromise to appease those doctors that don't believe chronic Lyme exists. And maybe to give insurance companies a different code to use. I don't know. I'm just guessing here.
Posted by seibertneurolyme (Member # 6416) on :
The only insurance code for Lyme disease is 088.88
There is no code for "chronic Lyme disease" -- If anyone asks I always say hubby has Lyme disease -- never have liked the word chronic. In my opinion, once you have Lyme disease you will always have it although if you are lucky it could go into remission.
I know hubby is not the only one who has a hard time keeping his WBC in the normal range -- keeps trying to go low (even when off antibiotics). When something accute occurs such as recent paralytic ileus and ear infection I have a hard time convincing docs he has an infection as his WBC only goes up to 8 or so (almost double usual numbers of 4.5) -- still in the normal range.
I would much rather argue over whether hubby has Lyme disease or borrelia rather than some obscure chronic inflammation.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
We don't need to "appease" anyone!
Posted by Mo (Member # 2863) on :
i am alarmed by this.
we need to hold the ground laid by ILADS and the body of work on PubMed re: the accurate medical description of these diseases.
chronic inflammation my @ss, that is merely a symptom.
this is a way to seguay Lyme into a trash can "syndrome" diagnosis, one which will inevitably be deemed as "appropriately treated" by treatment of inflammation and/or symptom abatement drugs.
like Fibro, MS or Chronic Fatigue.
this tactic/negligence must be challanged. mere standard treatment for in inflammation is very dangerous when chronic infection exists.
mo
Posted by dontlikeliver (Member # 4749) on :
I agree with what Mo has said above.
And it sounds to me so far as if this is just this one particular doc's opinion (so far), perhaps he's sitting on the fence. It seems that way to me.
Is this the Manhattan Dr. M?
DLL
Posted by HaplyCarlessdave (Member # 413) on :
quote:Originally posted by Lymetoo: We don't need to "appease" anyone!
I agree! This whole thing is such a bunch of bulloney!
It's incredibly pitiful that a certain contingent of ...'doctors'... feels threatened if somebody shows they were wrong about something. What gives? In research you're not going to get very far without being wrong sometimes, and if you attempt to use your position to try to negate other research done, when that research contradicts your hastily reached conclusions, you're not going to EVER get anywhere.
Using your power to get beureaucratic 'agencies' on your side", and blind them to your errors, in order to incite them to attack other researchers, at the expense of numerous patients' well being, is tragically ludicrous.
These ..'researchers'... ARE in fact criminals-- they came very close to killing me. Correct information on tickborne ilnesses must be made more widely available. There is NO EXCUSE for what is happening-- it is TOTALLY CRIMINAL!
I hope people who know how to make things happen can start helping us in this battle soon! Dave Streater (Who they almost killed... (babesia with no spleen, along with Lyme and ehlichia -- well known to be a very dangerous combination!))
Posted by 8man12 (Member # 7664) on :
They can call it what they like,nobody is listening to the ILAIDS. Wish they would.
Posted by sickandtiredofbeingsandt (Member # 10189) on :
Respectfully all, I didn't mean for this to become a huge thing causing anger. I simply repeated what I understood the doctor to say. Maybe I MISunderstood the whole thing. If so, I sincerely apologize for stirring up bad feelings here.
He is a very respected member of the ILADs and if you reread my original post to the end, you will figure out who it is.
I'm sure that he is doing what is necessary for the well being of his patients and his practice. Let's not impute bad motives here.
I did a little research and found it interesting that a lot of descriptions of Lyme Disease, including Chronic Lyme, state that it is an inflamatory condition.
Let's put this (and me, as it's very late) to bed.
Goodnight all.
Posted by shazdancer (Member # 1436) on :
No worries, sickandtired. I just see it as a doc who is trying to put a label on it that will still get us support from our insurance companies. While we continue to battle for the right to treat chronic Lyme, some doctors are trying to find loopholes so they can continue to treat their sick patients.
I can inderstand that, and I applaud them for it.
Regards, Shaz
Posted by Truthfinder (Member # 8512) on :
Thanks for posting about your meeting with Doc M., SickandTired.
I'm not crazy about the new proposed name either. The new name sounds like just another ``annoyance disorder''. I'm WAY past being annoyed.
In the past year, haven't I seen discussions where most here agree that, because there can be so many co-infections involved with ``Lyme Disease'', it really should be called something else?
(I think some suggestions were ``Microbe Soup'', ``Cootie-it is'', etc.)
Lyme Disease is really a bit of a misnomer for most of us. So, I'm not quite sure why some are upset by a proposed name change.
Tracy
Posted by CaliforniaLyme (Member # 7136) on :
We locally had a lawyer with Lyme diagnosed MS who was really bad and her doctor diagnosed her with "Severe Bacterial Infection" and treated her with IV antibiotics without a single peep from her insurance company- ah, a rose by any other name, would not smell that sweet!!!!!!!!!!!!!!!!!!!!
Posted by Mo (Member # 2863) on :
oops,
i didn't realize the doc was lyme-literate.
if it is to help patients get treated, i have no problem with using codes that cover symptoms to get insurance approval.
i would worry if there was a risk of having the diagnosis changed from chronic lyme to some sort of symdrome, in general, because the whole point of the complications and effective treatment is in the fact that these are chronic infections..
chronic bacterial infection is spot on, CALyme!
mo
Posted by Lyme Wolf (Member # 5463) on :
Hi all,
This is a *really* important thread. You might not realize it now, but it has something *really* important in it.
Let me see if I can connect the dots for you. Then, maybe together, we can DO something and CHANGE something. For us all.
Borreliosis is a disease classified as a spirochetal illness. There are other spirochetal illnesses with well defined stages. Specifically, syphilis, the scourge of at least a few centuries. In medicine, syphilis is characterized in stages, JUST LIKE BORRELIOSOS SHOULD BE.
We don't need to re-invent the wheel, AT ALL. In fact, most M.D.'s that I have been able to "win over", will readily use the syphilis terminology to describe Lyme Disease, and GET IT.
We all have "tertiary borreliosis", or, "tertiary lyme disease".
The organization that provides those medical codes to EVERY doctor and medical organization in the U.S. is the International Statistical Classification of Diseases and Related Health Problems. The codes are frequently referred to as ICD-9 codes. You can find them here:
Didn't see it? Didn't find it? Click on the "Other arthropod-borne diseases" and look for the SINGLE code of 088.81.
While this may APPEAR to be a minor problem, it is HUGE. Every doctor and medical professional in the country turn to this coding book for the establishment of a diagnosis. It is like hearing a word and looking it up in the dictionary to see if it is there. When they turn to this book, they find this aberration, and it STRONGLY REINFORCES the deception that borreliosis is not a significant HIV class systemic illness. Major health organizations come to the same conclusion, especially the ones who PAY for treatment.
NOW, is the time for change.
NOW, is the time to push for change.
Both ILADS and the LDA should unite to lobby this organization for the "Changing of the Codes". Lyme Disease, or borreliosis, NEEDS its own set of comprehensive codes, nearly identical to that of syphilis. A set of codes that includes the discrete stages of infection and wide variation of infection type (i.e. CNS vs. arthritic).
The good news is that we DO NOT have to cross the BUM STEERE's of the CDC or the IDSA to lobby the coding organization. Any M.D. or group of M.D.'s can lobby for new codes. A description of the process can be found here:
(While the CDC is the host for the coding organization, they DO NOT CONTROL IT). We can lobby for change.
Imagine this vision. In each Doctor's office across the country, a complete set of codes for a multifaceted, multistage, complex spirochetal illness. One that contains the terms:
latent persistent tertiary neurological
Each HMO would have MULTIPLE BILLING CODES to process for this disease. Resulting in, hopefully, greater care and payment for Lyme Disease.
PLEASE DO NOT contact the coding organization privately. THIS WILL NOT HELP, BUT RATHER HURT our cause. Please DO contact ILADS and the LDA personally to push forward on this.
This could be our greatest success in the diagnosis and treatment of Lyme Disease outside of a scientific breakthrough.
Keep on, keepin' on!
-Lyme Wolf
Posted by Lymetoo (Member # 743) on :
Sounds great, Lyme Wolf. Worth a try!!
sickandtired.....I'm not angry at Dr M, just at the IDSA and associated idiots. Our anger is justified.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by HaplyCarlessdave: These ..'researchers'... ARE in fact criminals-- they came very close to killing me. Correct information on tickborne ilnesses must be made more widely available. There is NO EXCUSE for what is happening-- it is TOTALLY CRIMINAL!
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