AP-Tim Whitmire writes: "N.C. doctor faces board discipline over treatment"
It's all about Dr. J in Huntersville, NC
The article discusses the 'radical approach' to the treatment of long-term or chronic LD and the reasons for the board investigation into treatment provided to many LD patients by this particular doctor.
After reading the article [which was lengthy] I realize that my biggest problem in NOT receiving proper treatment for my chronic LD is in my location. I live in North Carolina. There are a recorder number of a mere 49 LD patients in the ENTIRE state. NC state epidemiologist Jeff Engle says " There is Lyme Disease in North Carolina, It's just rare." So, now not only am I left to suffer, hopefully in silence, but I am also a rarity!" Who woulda thunk it? I am also a rarity in the type of cancer I have. It's very rare, less than 4,800 cases a year for all of the United States. I am sure by now I should be eligible for some sort of placement in a medical rarities book of records [:kidding:] This explains why I have not been able to find an LLMD in NC, why I am unable to get proper treatment for a very serious case of chronic LD and why no one wants to listen to me and I get that look 'It's all in your head' from every single health care 'professional'[and I use the term loosely] I come in contact with. If I were back on Cape Cod, in Massachusetts [where I am from and where I became infected] I would be able to pick and choose from a vast array of LLMD's...but down south I am merely a rarity that apparently does not deserve appropriate medical care. Does anyone else see this as a problem? If I could afford to move back home, I'd do it in an instant...just so I could find a good doctor. But I cannot, real estate prices are extremely high on Cape Cod [one reason why we sold our home in the historic district of downtown Hyannis] and living with a relative is out of the question...I wouldn't do that to me or to them.
[does this post qualify as a rant?] To say I am po'd is mild. This is so 'not fair' to any one of the 49 LD patients [and those are only the ones who have been confirmed through pos. titer tests] Do we not deserve adequate health care for a long term illness? Apparently we do not. Since those IN POWER will not even acknowlegde that chronic LD exists. Perhaps what it will take is for one of their children, or their spouse to become infected with LD...to watch them deteriorate and suffer as we have suffered...perhaps then, and only then will they acknowledge the existence of this debilitating disease and get off their collective *** and actually DO SOMETHING about it!!
Yeah, to say I am PO'd is putting it mildly this morning. Comments are most welcome!! Sharon >^..^<
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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posted
49 huh? Very doubtful indeed! NC is not the only state that "has no Lyme". That is the official stance of most states. Doesn't mean squat to you or me!!
I hope you can find the treatment you need. Are you seeing Dr J now?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Is this a done deal? Has the board made a decision?
Do you have a newspaper name or link so we could read the story on-line?
My suggestion would be to write to the newspaper, pointing out some lyme truths, and maybe the ignorance of the state epidemiologist. See if you can't get it a letter to the editor printed. You are a author, so write those rascals. Here are just a few things that could be mentioned, but you probably already have enough ammunition. Sometimes it is hard to know when to stop in these letters. They tend to print shorter letters.
1. If few doctors in the state know anything about lyme, they are not diagnosing and reporting it. Therefore, the number of reported cases in NC is irrelevant and very misleading. Government disease surveillance of lyme (and many other diseases) is described as "passive." It depends on the medical practitioners to report cases.
2. Bb has been found in many animals and in ticks in the state. This is evidence that people who are bitten by the same ticks can and do get the disease. Here are several studies you could mention/quote:
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Mil Med. 2003 Dec;168(12):1011-4.
Lyme disease reporting for Navy and Marine Corps (1997-2000).
McGinnis J, Bohnker BK, Malakooti M, Mann M, Sack DM.
Preventive Medicine Directorate, Navy Environmental Health Center, 620 John Paul Jones Circle, Portsmouth, VA 23708, USA.
Reported cases of Lyme disease for Navy and Marine Corps personnel during 1997-2000 are presented from data collected in the Naval Disease Reporting System and the Defense Medical Epidemiological Database. Naval Disease Reporting System identified 210 case subjects; 60% were men, 49% were family members, and 37% were active duty, and most originated in the second quarter of the calendar year.
States reporting the greatest number of reports were Connecticut (44%), North Carolina (16%), Rhode Island (10%), and Virginia (10%), which was generally consistent with national figures and the concentration of military populations.
Incidence rates from Defense Medical Epidemiological Database for Lyme disease were generally higher for active duty personnel than reported civilian rates. Areas for improvement for Naval Disease Reporting System are identified and include additional emphasis on complete reporting on patient history and on Lyme disease antibody testing results.
These findings suggest that Lyme disease is an important disease in military medicine, particularly in the eastern United States.
PMID: 14719627 [PubMed - indexed for MEDLINE]
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J Wildl Dis. 2000 Jan;36(1):48-55.
Characterization of Lyme disease spirochetes isolated from ticks and vertebrates in North Carolina.
Ryan JRApperson CS, Orndorff PE, Levin JF.
Department of Entomology, College of Agriculture and Life Sciences, North Carolina State University, Raleigh 27695, USA.
Borrelia burgdorferi isolates obtained from numerous locations and from different hosts in North Carolina, were compared to previously characterized strains of the Lyme disease spirochete and other Borrelia spp.
The spirochete isolates were confirmed to be B. burgdorferi sensu stricto based on immunofluorescence (IFA) using a monoclonal antibody to outer surface protein A (Osp A [H5332]) and polymerase chain reaction (PCR) using a species-specific nested primer for a conserved region of the gene that encodes for flagellin.
In addition, the isolates tested positive in Western blots with species-specific monoclonal antibodies for outer surface protein A and OspB (84c), and the genus-specific, monoclonal antibody to flagellin (H9724). Infectivity studies with several of these isolates were conducted using Mus musculus and Oryzomys palustris and the isolates exhibited markedly different levels of infectivity.
This study demonstrates that B. burgdorferi sensu stricto is present and naturally transmitted on the Outer Banks and in the Coastal Plain and Piedmont regions of North Carolina.
PMID: 10682743 [PubMed - indexed for MEDLINE]
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J Med Entomol. 1999 Sep;36(5):578-87.
Ticks and antibodies to Borrelia burgdorferi from mammals at Cape Hatteras, NC and Assateague Island, MD and VA.
Oliver JH Jr, Magnarelli LA, Hutcheson HJ, Anderson JF.
Institute of Arthropodology & Parasitology, Georgia Southern University, Statesboro 30460, USA.
Results of a survey for ixodid ticks and/or serum antibodies to Borrelia burgdorferi from 14 species of small to large mammals from eastern coastal areas of the United States are presented. Most samples were obtained from July 1987 through June 1989 (excluding December-March) at 3 locales: Assateague Is. National Seashore, Worcester Co., MD., and Accomack Co., VA. (approximately 38 degrees 05' N 75 degrees 10' W), and Cape Hatteras National Seashore, Dare Co., NC (approximately 35 degrees 30' N 76 degrees 35' W).
An indirect fluorescent antibody test was used for testing sera from opossums, raccoons, and feral cats; enzyme-linked immunosorbent assays were used for sera from foxes, horses, deer, and house and white-footed mice.
Antibodies to B. burgdorferi were found in all species tested from each locale.
Seasonal data reinforce the contention that P. leucopus is a suitable sentinel species for B. burgdorferi. Ticks on hosts included Ixodes scapularis Say, I. texanus Banks, Dermacentor variabilis (Say), D. albipictus (Packard), and Amblyomma americanum (L.). Males comprised approximately 0-22 and 60-81% of Ixodes sp. and Amblyomma-Dermacentor adults collected from hosts, respectively. All stages of A. americanum, adult D. variabilis, and larval I. scapularis were collected from vegetation.
The highest seropositivity rate (67%) was recorded for 45 P. leucopus at Assateague during July, approximately 1 mo. after peak nymphal I. scapularis intensity. Borrelia burgdorferi was isolated from 6 nymphal and 12 female I. scapularis collected from P. leucopus and C. nippon, respectively, on Assateague.
PMID: 10534951 [PubMed - indexed for MEDLINE]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I do not have a link yet I looked this morning but it hasn't been posted yet but it was in this morning's edition as soon as I have a link I will post it
I am not seeing Dr J Simply b/c I do not have health insurance and it would cost me $540.00 just to walk in the door and have an assessment done, not including any tests or meds etc I cannot afford it right now Saving my pennies for someday! S >^..^<
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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posted
And I might add, that your idea of a "vast" number of lyme doctors in MA, or anywhere, is....... The Mass. lymies would get a chuckle out of this.
Well, I wish it were true!!!! Boy, do I wish it were true.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
PS to Lou Sorry I should have thanked you:::: My suggestion would be to write to the newspaper, pointing out some lyme truths, and maybe the ignorance of the state epidemiologist. See if you can't get it a letter to the editor printed. You are a author, so write those rascals. Here are just a few things that could be mentioned, but you probably already have enough ammunition. Sometimes it is hard to know when to stop in these letters. They tend to print shorter letters.
1. If few doctors in the state know anything about lyme, they are not diagnosing and reporting it. Therefore, the number of reported cases in NC is irrelevant and very misleading. Government disease surveillance of lyme (and many other diseases) is described as "passive." It depends on the medical practitioners to report cases.
2. Bb has been found in many animals and in ticks in the state. This is evidence that people who are bitten by the same ticks can and do get the disease. :::::::::::::::::::::::::::::::::::::::::: I will write to the paper and hopefully they will print my letter. Thank you for the links and your comments S
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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posted
Lou you wrote: And I might add, that your idea of a "vast" number of lyme doctors in MA, or anywhere, is....... The Mass. lymies would get a chuckle out of this.
Well, I wish it were true!!!! Boy, do I wish it were true. *********************************** that is based only on info I get from back home. I am sorry to read that it isn't true.... and your right, I wish it was true too.
The best care I got in Mass was from my neurologist...My primary would just pass me on to one 'specialist' after another and treated symptoms as they appeared...and we all know that can mean a new 'specialist' each week, too many conflicting meds, no discussion amongst multiple caregivers and no resolution to your suffering. S
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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I am worried that you aren't getting treated. You have had so many health problems. Got more than your share. I'm sorry.
Someone else posted about it in medical forum, so I am going to add this thread link, so if anyone else feels like writing, they will have a starting place on ammunition. Seems like we have to keep saying the same thing over and over, and they still don't get it. I think anyone who writes a letter to the editor should send a copy to the governor, if they are NC residents.
This reporter really didn't do enough sleuthing on his own. Got the old 80 percent have the rash stuff, quotes only the IDSA, Shapiro, Klempner. Although he probably thinks it gave both sides, it was really heavily weighted against Dr. J.
Wondering if more people would read your thread if you changed the subject line.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
Breaking this up for us neuro lymies to read.
Sharon, please hit the enter button often and double space between EACH paragraph for us neuro lymies. We thank you for this. Betty
quote:Originally posted by sharonlacouture: I live in Wilmington NC
Article in todays paper section B page 6
AP-Tim Whitmire writes: "N.C. doctor faces board discipline over treatment"
It's all about Dr. J in Huntersville, NC
The article discusses the 'radical approach' to the treatment of long-term or chronic LD and the reasons for the board investigation into treatment provided to many LD patients by this particular doctor.
After reading the article [which was lengthy] I realize that my biggest problem in NOT receiving proper treatment for my chronic LD is in my location.
I live in North Carolina. There are a recorded number of a mere 49 LD patients in the ENTIRE state.
NC state epidemiologist Jeff Engle says " There is Lyme Disease in North Carolina, It's just rare."
So, now not only am I left to suffer, hopefully in silence, but I am also a rarity!" Who woulda thunk it?
I am also a rarity in the type of cancer I have. It's very rare, less than 4,800 cases a year for all of the United States.
I am sure by now I should be eligible for some sort of placement in a medical rarities book of records [:kidding:]
This explains why:
. I have not been able to find an LLMD in NC, . why I am unable to get proper treatment for a very serious case of chronic LD, . and why no one wants to listen to me; . and I get that look 'It's all in your head' from every single health care 'professional'[and I use the term loosely] I come in contact with.
If I were back on Cape Cod, in Massachusetts [where I am from and where I became infected],
I would be able to pick and choose from a vast array of LLMD's...but down south I am merely a rarity that apparently does not deserve appropriate medical care. Does anyone else see this as a problem?
If I could afford to move back home, I'd do it in an instant...just so I could find a good doctor.
But I cannot, real estate prices are extremely high on Cape Cod [one reason why we sold our home in the historic district of downtown Hyannis] and living with a relative is out of the question...I wouldn't do that to me or to them.
[does this post qualify as a rant?] To say I am po'd is mild.
This is so 'not fair' to any one of the 49 LD patients [and those are only the ones who have been confirmed through pos. titer tests]
Do we not deserve adequate health care for a long term illness? Apparently we do not.
Since those IN POWER will not even acknowlegde that chronic LD exists.
Perhaps what it will take is for one of their children, or their spouse to become infected with LD...to watch them deteriorate and suffer as we have suffered...perhaps then, and only then will they acknowledge the existence of this debilitating disease and get off their collective *** and actually DO SOMETHING about it!!
Yeah, to say I am PO'd is putting it mildly this morning. Comments are most welcome!! Sharon >^..^<
Sharon, sorry to read about your cancer & lyme; 2 life-threatening illneses. I agree with you; location makes a difference in getting any knowledable LLMDs coming to your state and starting a lyme disease practice there.
Best wishes to you both issues you are contending with.
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