Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Here are two centers that include Lyme disease in their differential diagnosis and treat it when they find it. The first one says they have treated hundreds of cases per year.
Does anyone have first-hand experience with either of them?
There are Fibro and Fatigue centers located few places in the country.
I know a few people on this bard have been to them, I have not.
I have heard some good and some bad. Hopefully those people will come along and chime in. There was thread not to long ago but I don't recall many responses.
Stella Marie
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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I've been going to the Fibromyalgia and Fatigue Center for a little over a year now.
They are very thorough in their evaluation. On my first visit they took 23 vials of blood.
They check all your hormones along with the usual blood work. I was put on supplements and bio-identical hormones for progesterone, cortisol, thyroid, estrogen and testosterone.
They also checked my blood for hypercoagulation and got me started on Heparin.
Next, they tested me for viruses and bacteria. I had lyme and 3 viruses that were active.
Their protocol is to put you on abx plus supplements to help your recovery. I took abx for 6 months and told my doctor I didn't want to take anymore as I felt toxic the whole time.
I started using the Rife machine and she was fine with that. She had another patient who was also interested and had her call me. My point in saying that is - she is open to new protocols.
I'm also using a steam/sauna tent with oxygen/ozone pumped in 30 minutes each night.
I go to the one near Atlanta and really like this doctor. I think at first they were treating patients with too many supplements but are now starting them a little slower.
I also go for IV's - the have different ones. The one I get is for the viruses.
They don't file insurance but you can file your own. They use Quest Diagnostics for the regular blood work so most of that was paid for.
The office visit is more expensive than a normal one but the doctor spends an hour and a half with you on that first visit instead of 15 minutes!
They use Igenex for the lyme testing which I'm fighting with my insurance company right now since they said there's no lyme in Georgia (good ole Aetna).
All in all, I like their thorough testing and the fact that I got my diagnosis there when all the other doctors I had been to never even mentioned lyme disease.
I think they know a lot more about lyme than they did a couple of years ago when they first opened.
I noticed while getting my iv's that they have a lot of kids/teens in there. I asked my nurse what they were in there for mostly and she said - lyme disease!
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
I have not been to FFC but have read comments over on some of the Chronic Fatigue Syndrome yahoo groups and the newsletter for the Chronic Fatigue Syndrome section of www.remedyfind.com - the moderator for that particular newsletter has been to the one in Los Angeles.
I, too, have heard both good and not so good, I think they really vary by location. The testing is expensive but I believe it is because they are very thorough.
Jacob Teitelbaum, M.D., has just taken over as the head of the FFC chain. He wrote From Fatigued to Fantastic and has a line of supplements for CFS.
He has been one of the better known doctors in the CFS field for many, many years - although I don't agree completely with him (I recovered from CFS after ten years, and I know there are many approaches to recovery - including, now the knowledge that Lyme is often a part of it).
But I would think he is a good addition to FFC, because he uses a lot of nutritional and supplemental support along with testing and treatment.
If I were you, I'd check out some of the Chronic Fatigue Syndrome or Fibromyalgia websites and chat rooms, I think they might have far more people with experience of going to FFC.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I looked at the first site you listed and it's "Lyme's" page is "under construction." From that I would be a bit leery of them.
Perhaps they know what they are doing, but not even knowing the correct name for the disease does not instill confidence in me!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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For Karatelady - If you need information to send to your insurance co. Re: Lyme in Georgia, here are links to articles by JH Oliver, PhD, entomologist at Georgia Southern University documenting its presence.
Lyme borreliosis in the southern United States: a review
The first link is a lady in Kansas City and she has been discussed several times here on LymeNet. Charges big bucks. Is into integrative medicine -- lots and lots of expensive testing. Does IV nutrition etc. Not real sure what her philosophy is on long-term antibiotics. Believes in oxidative therapies such as blood ozone etc. Think she would be better for adjunctive treatments than as an LLMD. Have not been to her personally.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
2nd link on FIBRO/FATIGUE CENTERS, they had a FULL PAGE ad in the latest FM AWARE, fibromymyalgia magazine, page 57, ALL ABOUT LYME DISEASE.
I had scanned this, but no way to put it here on lymenet so gave up that hope so glad you asked this question.
1st link, I found this and felt the need to copy it here ... I think could be very USEFUL WRITING CDC DIRECTOR with some of the statements she has made! It's food for thought ok!
My new LLMD/holistic dr. follows Dr. Tatelbaum, and she gives all new patients his book, FROM FATIGUED TO FANTASTIC. Been reading it. Back half is the MDs instructions, etc.
Yes, my LLMD put me on $700 of supplements he recommended. She also made sure on MY supplements that there are NO FOOD ALERGIES IN THEM FOR ME:
no sugar, wheat/rye, nor milk products!
I talked with IOWA'S BCBS yesterday since they have not paid ANY of my last 3 months of $3500 out of pocket expenditures. Her asst. copied all & sent to the states involved for payment by that state's bcBS office.
Discovered I had a major BOO BOO; I forgot to put the last digit of my husbands SS/BC ID no. on them, so they were NOT processed promptly and no one noticed that digit wasn't on there!
So to others filing their own paperwork, if you do nothing more than this on your paperwork, make sure:
1. ID no. is COMPLETE!; 2. You attach the bills, etc. 3. You sign & date it; 4. fill in the other stuff as required. 5. In my BCBS bottom part, I show TOTAL DUE to me, etc. Also note on your COPIES of your claims the date SENT to them. I've been asked that lately since their computers did NOT show ONE of my unpaid out of pocket claims!
Best wishes to all...sorry, had to get that out of my system!
I have broken this all up, emphasized certain things, etc. for us all! Bettyg
After reading this a few minutes ago, I felt the need to post this here and have a separate thread on it.
Also, felt it could be used in our letterwriting campaign to CDC director!
Below she gives GOOD advise on your insurance claims, DENIALS, & APPEALS! Please bookmark it or just print it off IF you are/have had problems.
Lyme Disease and Insurance Reimbursement ***************************************
This letter is to address the concerns presented by insurance companies and their lack of reimbursement coverage for the treatment of Lyme disease.
The first and most difficult task however, is to get the medical director for the insurance company to ``READ and REVIEW'' this documentation and references.
The arguments against reimbursement by most insurance companies fall within two major areas:
First is: Diagnosis is not within standard guidelines
Lyme diagnosis is not within standard of care There is not such thing as Lyme disease (in this area)
Lyme testing used are not FDA approved or CDC approved i.e. Bowen, MDL, etc.
There is no clinical evidence of Lyme disease with this patient (based on being ill informed and lack of understanding of the stages and symptoms of Lyme disease).
Second is: Treatment is NOT medically necessary because of one of the two following reasons:
1) Not adequate data supporting diagnosis and/or
2) the treatment is not within the standard of care for Lyme disease
Treatment with IV's for Lyme disease is not within standard of care:
Length of treatment is not standard of care;
Antibiotic used is not standard of care;
Supplements are not within standard of care;
Third and most significant: The insurance company does not want to pay for the treatment of Lyme disease and the medical directors/review board of the insurance company serves to implement that position.
The hurdle once again is to get a fair hearing. *********************************************
There are several levels of confronting the insurance company once they have rejected the initial claim.
The first step however, is to make sure that the patient's insurance policy does provide coverage for claims.
It is best to have some indication at the beginning of treatment. Remember that even though the insurance company may say they will cover treatment, they always state they reserve the right to review the claim before reimbursement.
Make sure the patient understands that coverage is always within the limits of the individual policy and they coverage is always what is ``usual and customary.''
First Response: responding to requests for more information and patient notes following billing to the insurance company.
Second Response: responding to the first rejection letter.
Send Letter of Medical Necessity with copies of test results and summary of clinical data.
Third Response: After the patient or physician has received a second letter of rejection, send a more detailed response about diagnosis (clinical);
lab results that support Lyme disease and secondary conditions,
and copies of the patients chart,
and possible detailed information about Lyme disease, diagnosis and treatment.
This letter must address ``NOT medically necessary'' and ``standard of care'' and present a detailed description of clinical data to support the diagnosis .
Fourth Response: When a third letter of rejection is sent to the patient or physician, the patient must request a face to face hearing with the insurance company .
The insurance company must grant this request.
At this time, someone from the physicians office must provide material to support the diagnosis and treatment of Lyme disease and may even have to be on the phone with the insurance company giving supportive information about diagnosis and treatment.
This can be the patient's physician, nurse or someone in the office who understands the diagnosis and treatment of Lyme disease.
They key is to be sufficiently armed with refutable information .
In the end however, there is NO GUARANTEE that the insurance company will respond by reimbursement of treatment.
We have found however, that most of the time the insurance company will respond in a positive manner at this point.
Facts to be considered are: ***************************
Currently, there are two approaches to the diagnosis and treatment of Lyme disease.
Two sets of diagnostic and treatment guidelines, reflecting the different approaches, are available in peer review literature.
Thus, two community standards of practice exist.: both diagnosis and treatment of Lyme disease recognized by most state boards.
When considering whether standard of care is within guidelines of medical practice the insurance company must understand there are two standards of care.
The two standards of care are:
1) traditional - Lyme disease is rare, and if a person does have Lyme disease 2-4 weeks with oral antibiotics for early Lyme disease will solve the problem.
Most of the time Lyme disease is not recognized unless there is a EM (bulls eye rash) on the patient.
2) Growing standard that Lyme disease is widespread and treatment should be a minimum of 4-6 weeks of oral antibiotics for early Lyme and IV antibiotics for late stages of Lyme with treatment lasting 4-6 weeks followed by oral treatment of up to 1 year.
The primary difference being that with the second frame of reference, physicians believe that Lyme disease should be treated aggressively and for a long period of time.
This is especially true for late stage Lyme disease.
Most physicians and insurance companies are not up to date on the diagnosis and treatment of Lyme disease.
Their judgment is based on archaic information, misinformation and an unwillingness to update Lyme disease.
Most states have committees or boards who are looking at the diagnosis and treatment of Lyme disease.
Their focus is on accurate reporting, better testing and standards of treatment for Lyme disease.
Must consider what stage of Lyme disease the patient is in that is being treated. Late stage of Lyme disease or chronic Lyme disease is treated with IV Infusion treatment.
Definitions by the CDC and FDA regarding Lyme disease, diagnosis and treatment .
Problems with current Lyme disease testing Definitions
Medical Necessity - Increasingly across the US , in insurance cases, the term ``medical necessity'' is being interpreted by the courts as the standard of community care for the illness involved.
There are two legally accepted approaches to diagnosis and care of Lyme disease.
In cases of recurrent or long-term chronic Lyme disease, treated with IV antibiotics, insurers have been quick to shield themselves behind the standard enabling them to reject or restrict a claim for reimbursement of treatment.
Therefore, ``medically necessity'' by most insurance companies is the traditional definition.
The growing definition of ``medical necessity'' accepted is that Lyme disease is best diagnosed clinically by a physician who is understands Lyme disease.
That testing for Lyme disease is not necessary for diagnosis but encouraged as supportive documentation.
Increasingly many state medical boards and the legal system, is recognizing that Lyme disease:
. is on the increase, . that the definition of Lyme disease is much broader than previously considered y ``traditional standards'', . more research must be done, . more accurate Lyme disease testing developed, . and better treatment methods for Lyme disease patients.
There is growing support by the legal system that insurance companies reimburse for the chronic treatment of Lyme disease .
The ``key'' then, in this latter definition of ``medical necessity'' is to diagnose Lyme disease ``clinically'' based on an accurate and detailed medical history that is well documented.
Lyme testing is an important validation but when current testing does not support Lyme disease, the clinical evaluation by the physician takes precedence over the blood test.
CDC Definition of Lyme disease - in 1996 the CDC recommends that to properly diagnose Lyme disease you must
1) identification by a physician of EM (rash) in the early stage, or a major system involvement with positive serology;
2) recognition by evaluating physicians of characteristic clinical sign, a history of exposure in an area endemic for Lyme-transmitting ticks, and the use of laboratory tests as an adjunct to diagnosis.
The CDC further states that on the Western Blot there must be 5 of 10 bands for IgG and 2 of 3 for IgM.
It is important to note that this 1996 definition of Lyme disease, excludes bands for OspA and OspB, the 31kDa and 34kDa bands, respectively, which are very specific in Lyme disease.
The ELISA is the second test the CDC recommends for Lyme disease.
Problems with the CDC definition are: **************************************
Most tick bites do not produce an EM (rash). Lyme disease is spreading rapidly throughout the US; thereby, conflicting with the CDC statement that a tick caring Lyme disease is limited to and area they define as endemic for Lyme-transmitting disease.
Both the ELISA and Western Blot measure the immune system's response to the Lyme spirochete - that is - looking for the immune systems reaction within the blood for antibodies.
They believe that is there are no antibodies; there is no Lyme disease.
What these tests cannot pick up, . is that spirochetes have a slow growth rate, . can remain dormant for a lengthy period of time, . and can invade cellular walls, . and therefore do not produce an immune system response of antibodies.
Therefore there is a high rate of false negative is produced on these tests .
There is a problem of standardization of these tests among labs.
FDA Definitions: In 1997, the FDA says that physicians should use blood testing ``only to support a clinical diagnosis''.
This is extremely important for insurance companies to understand and especially when insurance companies take the position that the only way to diagnose Lyme disease is with a positive Western Blot or ELISA test.
The FDA goes on to say that the results of Lyme tests (WB and ELISA primarily) ``may be easily misinterpreted.''
Bb is difficult to detect by most laboratory methods in use today, and a little known fact is that there ISN'T CURRENTLY A TEST APPROVED by the FDA for Lyme Disease.
Definitions of: Diagnosis of Lyme Disease - Must be made Clinically by a qualified physician.
Diagnosis of Lyme Disease from John's Hopkins Medical School.
The diagnosis of Lyme disease is clinical, and the diagnostician must consider many types of evidence.
The history is very important to the diagnosis of the disease (e.g., opportunity for tick exposure? live or work in endemic area? recent tick bites?).
The temporality and pattern of the development of symptoms is critical to the diagnosis.
Diagnosis of Lyme Disease by Joseph Burrascano Jr., M.D.
Lyme is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms.
The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints.
Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Diagnosis of Lyme Disease by Brian A. Fallon, MD; Columbia University
The criteria for diagnosing Lyme disease vary depending upon the purpose. For surveillance studies (3), the diagnosis requires a history of exposure in an endemic area and either:
(1) a physician-diagnosed erythema chronicum migrans rash, or,
(2) serologic evidence of exposure to Borrelia burgdorferi and one of the following:
(a) arthritic symptoms-recurrent brief attacks of joint swelling or joint pain;
(b) neurologic symptoms-such as lymphocytic meningitis, cranial neuritis, radiculoneuropathy, and/or encephalomyelitis; or
(c) cardiac conduction defects-second or third degree AV block.
This definition, while useful for research purposes, is unduly restrictive because about one-third of patients do not recall a rash and because current serologic testing is generally considered inadequate, producing false negatives and false positives (5).
Thus, the diagnosis of Lyme disease at this point remains clinical not serologic .
Because Lyme borreliosis is multisystemic, the differential diagnosis has to be broad, including:
If treated early, the disease may be limited to an asymptomatic rash or only a few days to a week of flu-like symptoms.
In its later stages, patients may have multisystemic disease, leading to an inability to work for months to years .
The simplest tasks may become insurmountable. ********************************************
Report by the FDA in October 1997
The Western blot is a supplemental test only; it is NOT a confirmatory test. No confirmatory serological test exists at this time
Do not make the diagnosis of Lyme disease based on the results of serological lab tests.
The diagnosis must be based on a high index of clinical suspicion before laboratory testing.
Do not use seiological tests for Lyme disease for screening asymptomatic patients. The diagnosis must be made clinically.
Serological tests for B. burgdorferi are only an aid to establish the diagnosis in the presence of strong clinical suspicion.
(The most definitive diagnostic procedure is biopsy and isolation of the organism in culture, which frequently yields the spirochete, but is often not practical.)
Definitions of Testing for Lyme disease: ****************************************
In the February 15,issue of the American Journal of Medicine, Mark S. Klempner, M.D., of NEMC and his scientific collaborators in New York , Connecticut and Washington, D.C., report their findings
about the reliability of two Lyme disease tests: an IgG Western blot blood test and the Lyme urine antigen test, or LUAT.
The IgG Western blot is a licensed test used to screen blood samples for antibodies to the Lyme bacterium, Borrelia burgdorferi.
The LUAT detects proteins derived from the bacterium in urine samples.
Although the LUAT has not been approved by the Food and Drug Administration as a valid diagnostic test for Lyme disease, it is widely used, and the NIAID Lyme Disease Advisory Panel asked that it be further evaluated.
Serologic testing is thus NOT very helpful in a patient with classic erythema migrans, who will be treated for Lyme disease regardless of the serologic test result.
The specificity of serologic testing is approximately 90-95% for all stages of the disease. John's Hopkins University Medical School
Primary Tests for Lyme Disease and validation of results :
The ELISA test is unreliable, and misses 35% of culture proven Lyme (only 65% sensitivity!) and is unacceptable as the first step of a two step screening protocol. (By definition a screening test should have 95% sensitivity.)
Of patients with acute culture proven Lyme disease, 20-30% remain seronegative on serial Western Blot sampling.
Antibody titers also appear to decline over time; thus, the IgG Western Blot is even less sensitive in detecting chronic Lyme infection yet the IgM Western Blot may work .
For "epidemiological purposes" the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they have been chosen for vaccine development.
However, for patients NOT vaccinated for Lyme, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure.
When used as a part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports on all 16 bands as part of their routine comprehensive analysis.
Laboratories (such as SmithKline) that use FDA approved kits (for instance, Mardex's Marblot) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer.
These rules are set up in accordance with the CDCs surveillance criteria. and increase the risk of false negative results.
These kits may be OK for surveillance purposes, but offer too scanty of an analysis to be useful in patient management.
PCR assay and detection of pieces of the spirochete through antigen assays both give stronger indication of the presence of the Lyme pathogen; but currently these tests don't conclusively prove that live Bb spirochete are present and causing active illness.
PCR tests are now available, and although they are very specific, sensitivity remains poor, possibly less than 30% .
This is because Bb causes a deep tissue infection and is only transiently found in body humors.
Therefore, just as in routine blood culturing, multiple specimens must be collected to increase yield; a negative result does not rule out infection, but a positive one is significant.
5. Bowen "Rapid Identification of Borrelia burgdorferi" (RIBb ). The Bb antigen is identified by the presence of fluorescing structures upon microscopy.
At Bowen Research & Training Institute, Inc., located in Palm Harbor, Florida, ongoing research is being conducted using the Bowen Q-RIBb (Quantitative Rapid Identification of Borrelia burgdorferi) test developed by Dr. JoAnne Whitaker.
Originally a CLIA approved lab until April of 2003, the institute, lacking in vital grant funding, changed its status from that of a clinical lab to a research facility under the State of Florida Health Department.
Since its inception, the main focus at the institute has been the development of an accurate test for the Borrelia burgdorferi (Bb) antigen, the causative agent of Lyme disease.
The Bowen Q-RIBb test just recently received its preliminary US Patent approval. Although the Bowen Q-RiBb Test is not presently approved by the FDA for Lyme disease; an application for FDA approval is now pending.
General Statements from John's Hopkins about Diagnosis of Lymes Disease .
``Within weeks to months of becoming infected, early disseminated Lyme disease may occur (formerly termed stage 2).
Approximately 4-10% of patients in the U.S. develop cardiac manifestations , including:
conduction defects (e.g., atrioventricular block, complete heart block, bundle branch block, fascicular block), tachyarrhythmias (e.g., atrial due to pericarditis, uncommonly ventricular as an escape rhythm), myopericarditis, and mild myocardial dysfunction.
Involvement of the central or peripheral nervous systems may occur in up to 10 to 20% of cases, may be manifested by:
headache, fatigue, stiff neck, and malaise, and includes such diagnoses as
Lyme meningitis, neuroborreliosis, cranial neuropathies (especially facial nerve palsy, which can be bilateral), peripheral neuropathy, radiculitis, myelopathy, or brachial plexopathy.
Lyme disease may also involve the eye (e.g., follicular conjunctivitis, keratitis, and rarely uveitis or vitritis).
Musculoskeletal manifestations of Lyme disease are very common.
During early infection , migratory arthralgias and pain in bursae, tendon, muscle, or bone occur in the majority of patients.
Weeks to months later. , frank arthritis, most commonly mono- or oligoarticular and involving large joints (most commonly knees, but also shoulders, ankles, elbows, and other sites), may develop.
Lyme arthritis is one manifestation of persistent or late Lyme disease (previously termed state 3).
In the United States, approximately 60% of untreated patients will develop intermittent episodes of joint pain and swelling, months to years after the infecting tick bite.
The most common presentation is a single involved knee but can involve both knees and be migatory, but both large and small joints may be affected, and usually only one or two joints at a time.
Over time, the frequency and severity of attacks can decline, and, on average, the proportion of patients with recurrent attacks declines by 10-20% annually.
Approximately 10% of untreated patients may develop chronic arthritis, defined as one year or more of continuous joint inflammation.
I found this very interesting; hope you gained some info from it also! Bettyg
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by lymednva: I looked at the first site you listed and it's "Lyme's" page is "under construction." From that I would be a bit leery of them.
Perhaps they know what they are doing, but not even knowing the correct name for the disease does not instill confidence in me!
I think it's a grammatical error and not spelling the disease wrong. There is an apostrophe, so it's saying the page belonging to Lyme, like if you had a website with a link to Aniek's website.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by lymednva: I looked at the first site you listed and it's "Lyme's" page is "under construction." From that I would be a bit leery of them.
I think it's a grammatical error and not spelling the disease wrong. There is an apostrophe, so it's saying the page belonging to Lyme, like if you had a website with a link to Aniek's website.
Aniek....could be...but I tend to disagree. MANY people here in the USA spell things with an apostrophe S, thinking it is the way to make it plural.
Drives me up the wall!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
I credit the Fibromyalgia and Fatigue Center for pointing me toward Lyme - however their expertise in treating Lyme seems to vary greatly depending on the center.
The center that I went to used Quest for their Lyme testing. After doing the Quest test, I did some research and went back asking for an Igenex test. My test came back CDC positive but the doctor insisted that 4 months of antibiotics would be the maximum that I would need.
At this point I figured I would be better off in finding an LLMD as I saw another potential dead end looming in front of me.
Support staff was terrific though.
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