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» LymeNet Flash » Questions and Discussion » Activism » My official complaint to DPH re: Lyme-Denying Doc.

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Author Topic: My official complaint to DPH re: Lyme-Denying Doc.
paulieinct
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Following is an official complaint I have just filed with the CT Dept. of Public Health against a local doc who has tried to cover-up a Lyme death.
Names of doc, patient, and hosp. have been changed:
_________________________________________________
To: CT Dept. of Public Health

Hello:

Please accept this email as an official complaint against Dr. Dunno Nuffin of West Cupcake, who was the treating physician of patient Sally Jones, DOB XX/XX/XXXX. Ms. Jones died on XXX XX, 2011.

A hard-copy written and signed complaint with attachments is being mailed to you. Attached will be Ms. Jones' obituary in which the family asked that donations be made to a Lyme Disease organization. Also attached will be a copy of Ms. Jones' death certificate completed by Dr. Nuffin wherein he indicates the cause of death as "acute respiratory failure".

I met Sally Jones about a year and a half ago. She was suffering from a very debilitating illness which left her unable to work. She had previously been employed as a nurse aide. She told me that she moved from her home in West Cupcake to live with her daughter in Massachusetts, since her illness had gotten so bad that she felt she was dying. She told me that her doctor was Dunno Nuffin, MD in West Cupcake, CT. Dr. Nuffin did not take Ms. Jones' complaints seriously, even as she persisted in trying to convey to him that she felt she was dying. She had numerous symptoms, but the one that scared her the most was episodes of severe shortness of breath.

I myself have chronic Lyme Disease. I was misdiagnosed for decades by doctor after doctor. Three and a half years ago I was finally diagnosed with late-stage multi-system disseminated Lyme Disease, a.k.a. Chronic Lyme Disease, with co-infections babesiosis and erlichiosis. My serology over the years, using the standard two-tier testing for Lyme was always negative. In 2008 when I had my blood sent to IGENEX Lab in California, my results were "IGENEX - positive" but still "CDC negative". As you know, the CDC criteria for positive serology is for epidemiological purposes. It is NOT to be used to exclude Lyme as a diagnosis in the presence of clinical indications of Lyme. As you also probably know, 99% of doctors in Connecticut WRONGLY rely on serology almost exclusively for the diagnosis of Lyme Disease.

I had several discussions with Ms. Jones about her symptoms. I have become very educated about Lyme Disease since my diagnosis. It was very clear to me that Ms. Jones was suffering from Lyme with possible coinfections. She was unable to afford a Lyme specialist, and was restricted in which doctors she could see because she was on a State insurance program for the indigent. I urged her to demand of her doctor that he treat her for Lyme Disease based on her clinical presentation.

Shortly after my first discussion with Ms. Jones, she went and had a consult with a woman naturopath in the area. (I do not know which one, I believe there are two women naturopaths here). Ms. Jones had seen this naturopath in the past, but could not see her regularly since she was out-of-network. Ms. Jones informed me that the naturopath examined her and made a clinical diagnosis of Lyme Disease. It is my understanding that the naturopath did call Dr. Nuffin to inform him of her findings.

It is my understanding that Dr. Nuffin did start treating Ms. Jones with antibiotics for Lyme disease. I do not know if he treated her for co-infections. I am not aware of her serology results.

I lost contact with Ms. Jones for about a year, and was shocked to learn of her death at the age of 57 in XXXX 2011.
I obtained a copy of her death certificate and was also shocked to find no mention of Lyme Disease anywhere as a CAUSE, UNDERLYING CAUSE, or SIGNIFICANT CONDITION CONTRIBUTING TO DEATH. The cause was listed simply as "acute respiratory failure."

I maintain that Dr. Nuffin falsely and illegally omitted the fact of her Lyme Disease on the death certificate. He did this knowing that Ms. Jones had Lyme Disease, and that he did in fact TREAT HER FOR IT. Obviously, his treatment was inadequate or possibly too little too late. His omissions on the death certificate were obviously an attempt to continue the Lyme Disease cover-up, and to shield himself from possible legal action.

Of interest is the fact that Ms. Jones' boyfriend was diagnosed and treated for Lyme Disease years ago (not by Dr. Nuffin). Of course he was undertreated and he almost died of heart failure due to Lyme Disease at Howdy Doody Hospital. They treated him with IV antibiotics and he recovered from the acute episode. They pronounced him "cured" even though he continued to present with many symptoms I know are due to chronic Lyme Disease. I add this as an "aside", only to underscore my observation that this disease is RAGING in this part of the state, and frequently entire families are infected.

I am requesting that your agency investigate this matter thoroughly, AT LEAST as thoroughly as your investigation of Dr. J., whose worst offense was, apparently, curing over 10,000 very sick children and embarrassing all the Lyme-denying pediatricians in the process.

I will be happy to come in and provide testimony in this case. Please know that many of us in the Lyme community will be following this case very closely.


Sincerely,


Paulie XXXXXXX
XX XXXXXXX XX
XXXXX, CT XXXXX
xxx-xxx-xxxx

cc: Governor
Lt. Governor
DPH Commissioner
newspapers

[ 03-12-2012, 09:30 PM: Message edited by: paulieinct ]

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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poppy
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Good for you for doing this.

I often wonder if all the people with lyme who had trouble getting treated should be contacting the state medical board to complain about the difficulty they had.

Maybe if they were swamped with complaints from CT citizens, they might be worn down. But really, since the board is ignoring the state law about lyme and pretending that Dr. J's case is not about lyme, the only real solution is for that board to get fired. Politicians can do this, so maybe the target of citizen complaints should be the pols, telling them to dump that board.

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paulieinct
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Poppy:

Yes, I believe EVERYONE who has been misdiagnosed should file a complaint with the State Medical Board. At the very least, it will SWAMP them with cases that they will at least have to process.

If Dr. Jones' case was NOT about Lyme, then my complaint is NOT about Lyme, it is about falsification of a death certificate. The death cert asks three things: 1) immediate cause of death, 2) all conditions leading to the cause of death, and 3) other significant conditions contributing to death but not resulting in the underlying cause. The last two items were left BLANK.

This doctor treated her with abx for Lyme, and may have been treating her at the time of death. Failure to list Lyme anywhere on the death certificate is WRONG, UNETHICAL, and constitutes a COVER-UP.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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RDaywillcome
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Check out McHoule's obit on the lyme memoriam.
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RDaywillcome
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Might have spelled that wrong.
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paulieinct
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quote:
Originally posted by RDaywillcome:
Check out McHoule's obit on the lyme memoriam.

Where's the Lyme Memoriam?

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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poppy
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Well, the worst thing would be if the doctor had not treated her, she had died, and the death certificate did not show the real cause. But he did treat her. We don't know how well or how long. I guess you could say that there are blacker villains. Those would be the ones who wouldn't treat the children that Dr. J now sees.
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paulieinct
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quote:
Originally posted by poppy:
Well, the worst thing would be if the doctor had not treated her, she had died, and the death certificate did not show the real cause. But he did treat her. We don't know how well or how long. I guess you could say that there are blacker villains. Those would be the ones who wouldn't treat the children that Dr. J now sees.

I agree, there are blacker villains. This doctor, however, did not entertain the possibility of Lyme until it was forced upon him. By that point, the patient was in bad shape, altho I do not believe she had to die.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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poppy
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Yes, he should have thought of it sooner.

And I changed my mind about what I said above. The blackest villains in that state are the ones on the medical board who created such an atmosphere of fear that most doctors were afraid to treat lyme. Dr. J's case was and is meant to deter lyme treatment.

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t9im
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Hi paulie:

Well you can also send it to the health committee of the state legislature but you need to know the MD was following the "standard of care" which includes the strict diagnosis so nothing will happen to the MD.

Under the standard of care the only clinical diagnosis is an observed EM rash.

--------------------
Tim

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paulieinct
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quote:
Originally posted by t9im:
Hi paulie:

Well you can also send it to the health committee of the state legislature but you need to know the MD was following the "standard of care" which includes the strict diagnosis so nothing will happen to the MD.

Under the standard of care the only clinical diagnosis is an observed EM rash.

Tim:

I would not be surprised if nothing comes of this. However, the issue for the committee to consider is not whether she was treated properly, but did the doctor falsify the death certificate? If he did in fact end up treating her for Lyme, and if he was treating her at the time of death, why did he omit the diagnosis of Lyme on the death certificate? At some point he obviously concurred with the naturopath and gave her a Lyme diagnosis.

There are THREE places on the death cert to list medical conditions: 1) immediate cause of death, 2) underlying conditions contributing to cause of death, and 3)other significant conditions contributing to death but not resulting in the underlying cause. Item#1 was filled-in: acute respiratory failure. Items# 2 and 3 were left BLANK.

It is clear to me that this doc covered up a Lyme death. If it was not the DIRECT cause of death, it certainly contributed to it.

I believe we need to stop believing that there is nothing we can do against lyme-denying docs. There is plenty. Complaints such as mine are one way.

Remember, the story of this pandemic is playing out case by case, word by word, letter by letter, post by post, on the electronic media. Unlike medical scandals of the past, such as the Tuskegee Experiment, everything about the public health disaster that is Lyme is being documented for the world to see.

Thank you for your suggestion that I cc the Health Care Committee of the State Legislature. Good idea.

[ 03-20-2012, 10:46 AM: Message edited by: paulieinct ]

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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hammond
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Hi Paulieinct!

I do not pretend to know the in's and out's of CT. law but I applaud your initiative to bring to light this case to the medical board.

My experience has been that CT. is filled with well educated medical professionals on both sides of the debate. You have brought to the attention of the appropriate medical/legal authority an important case....... and that is well done.

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paulieinct
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update: Just received a letter from DPH Investigations Unit acknowledging receipt of my complaint against the doctor.

I just found an extremely pertinent article about acute respiratory failure and Lyme Disease, so I emailed the article to DPH requesting that they include this info in the file:

_________________________________________

Hello:

I just received your letter acknowledging receipt of my complaint against Dr. Dunno Nuffin.

I am requesting that you add the following information to my file. It is an article published in the Journal of Neurology, Neurosurgery & Psychiatry concerning Acute Respiratory Failure in Lyme Disease. I feel it is extremely pertinent to this case, as the patient, Sally Jones (deceased), died of acute respiratory failure after being diagnosed with Lyme Disease.

Please confirm by return email that this has been done.

Thank you,

Paulie XXXXXXX
XXXX XXXX Rd.
XXXXX, CT XXXXX


J Neurol Neurosurg Psychiatry 2005;76:1306-1307 doi:10.1136/jnnp.2004.046284

Letter

Diaphragmatic paralysis and respiratory failure as a complication of Lyme disease

R A Abbott,
S Hammans,
M Margarson,
B M Aji

+ Author Affiliations

St Richard's Hospital, Chichester, UK

Correspondence to:
 Rachel A Abbott
 St Richard's Hospital, Spitalfield Lane, Chichester, West Sussex PO19 6SE, UK; [email protected]

There have been five recorded cases of diaphragmatic paralysis as a complication of neuroborreliosis.1-5 Here we report another case of Lyme meningoradiculitis, caused by an identified tick, leading to bilateral diaphragmatic paralysis with an abbreviated course on treatment.
Case report

A 59 year old female presented with a recent history of abdominal pain and falls because of a weakness in her right leg. She had been complaining of flu-like symptoms with twitches in her back and pain in her right side for a month. She gave a history of recently having been bitten by ticks whilst gardening. There was no history of any recent rash. On the day of presentation, she complained of a mild cough, reduced appetite, abdominal distension, constipation, and dysuria. She was a lifelong smoker but was generally healthy.

At presentation her blood pressure was 206/107 mm Hg. There was some epigastric tenderness. She had bruising on her right leg that she associated with the falls.

The chest radiograph on admission was unremarkable. Abdominal x ray showed dilated loops of small bowel and a loaded colon. Her only blood abnormality was hyponatraemia at 121 mmol/l. She was admitted for further investigations.

On day 3 of admission she became increasingly short of breath and on examination had decreased bibasal air entry. On day 4 her respiratory rate was 25/min and arterial blood gases (ABG) demonstrated hypoxaemia but adequate ventilation with pH 7.51, Po2 6.7 kPa, and Pco2 4.7 kPa. Her chest radiograph showed left basal changes. On day 5 her Pco2 had risen to 6.8; she was admitted to the intensive care unit and non-invasive ventilatory support was commenced. She had a decreased inspiratory pressure and a decreased vital capacity. She was noted to have absent gag reflex and poor swallow and on day 6 was intubated to protect against aspiration pneumonia. The patient remained fully conscious and co-operative, easily triggering the ventilator but requiring significant inspiratory pressure support of 20 cm H2O.

Neurological examination demonstrated right hip and knee extensor weakness (2/5), absent right knee jerk, and a loss of sensation on her left lateral thigh. Because she lived in a known endemic area we thought about Lyme disease, but we also considered differential diagnoses such as Guillain-Barre syndrome, listeriosis, and acute poliomyelitis. We commenced treatment with doxycycline whilst awaiting the results of further investigations. Around this time the patient indicated a small black lesion on her upper abdomen that was removed and on closer examination was identified as tick mouthparts (fig 1).
Figure 1
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Figure 1

 Photomicrograph of tick recovered from patient, showing tick mouthparts.

Given her smoking history and persistent hyponatraemia, a chest computerised tomography was performed which showed only left lower lobe collapse and a small left pleural effusion. Bronchoscopy was unremarkable. Chest ultrasound screening showed only minimal movement of both diaphragms.

Cerebrospinal fluid analysis (CSF) demonstrated a white cell count 181 cells/mm3 (100% mononuclear), red cell count 22 cells/mm3, glucose 2.3 mmol/l (serum glucose 6.8 mmol/l), and protein 0.96 g/l. Immunological analysis of the CSF was not done because an insufficient sample was obtained. Brain magnetic resonance imaging (MRI) was normal. Spinal MRI and electromyography were not carried out. Immunoglobulin M and immunoglobulin G antibodies to Borrelia burgdorferi were detected in serum, and at this point intravenous ceftriaxone (2 g for 30 days) was commenced.

Over the next 7 days her strength increased and a repeat ultrasound of the diaphragm on day 16 of admission showed marked improvement with the right dome moving normally and some residual left sided weakness associated with overlying lung consolidation.

The patient was weaned from the ventilator and extubated following a total of 22 days of respiratory support. She underwent intensive physiotherapy and has made an uneventful recovery. One year later she complained of mild shortness of breath on lying flat with an exercise tolerance of 1 mile on the flat. On examination she had hyperaesthesia in her right leg with slightly brisk knee reflexes (previously absent right knee jerk). She had persistent bilateral diaphragmatic paralysis demonstrated on chest ultrasound screening. Pulmonary function tests showed a 40% reduction between erect and supine vital capacity measurements.
Discussion

The first case of diaphragmatic paralysis as a complication of Lyme disease was reported in 1986: a 73 year old male, treated with ampicillin and netilmicin, who required ventilation for 3 months and then died after receiving treatment for a pulmonary embolism.1 Another four cases have been reported in patients between the ages of 39 and 68, all of whom were treated with either doxycycline or ceftriaxone and two of whom required ventilation due to respiratory failure.1-5 All patients were well at follow up, although one patient had persistent phrenic paralysis 6 months after treatment.5

In all previous cases of diaphragmatic palsy as a complication of Lyme disease, either the patient reported dyspnoea or hypoxia was noted on ABG. The diagnosis of phrenic nerve palsy was made by the following methods: hemidiaphragm elevation, fluoroscopic screening of diaphragmatic movements, or electrical stimulation of phrenic nerves.1-5 Our patient had a lymphocytic meningitis with sensory and motor neuropathies including bilateral phrenic nerve palsies. Diaphragmatic paralysis due to Lyme disease was diagnosed on the basis of clinical features, chest ultrasonography, the presence of the tick head, and serology indicating a recent infection with B burgdorferi as well as a rapid response to antibiotic therapy.

The clinical diagnosis of Lyme disease may be supported by serologic testing. B burgdorferi antibody tests may be negative in early infection, but patients are usually seropositive at or shortly after presenting with neurological symptoms. In some patients, antibodies against B burgdorferi may be detectable in CSF slightly earlier than serum. Culture and B burgdorferi deoxyribonucleic acid detection using polymerase chain reaction may also be used but were not in our case.

The three patients reported in the literature with respiratory failure caused by neuroborreliosis were ventilated for 3 months, 1 month, and 13 months, respectively, whilst our patient required ventilation for only 22 days.1,2,4 We speculate that early recognition of the possibility of Lyme disease and appropriate treatment shortened our patient's acute illness.

In conclusion, it is important to consider Lyme disease in the differential diagnosis of acute respiratory failure - with or without erythema migrans.
Acknowledgments

We would like to thank Mr P R Randell of the Microbiology Department, St Richard's Hospital, Chichester, UK and Dr Susan O'Connell of the Department of Microbiology and Public Health Laboratory, Southampton General Hospital, Southampton, UK.
Footnotes

Competing interests: none declared

References


Melet M, Gerard A, Voiriot P, et al. Mningoradiculonvrite mortelle au cours d'une maladie de Lyme. Presse Med 1986;5:2075.

Sigler S, Kershaw P, Scheuch R, et al. Rspiratory failure due to Lyme meningoradiculitis. Am J Med 1997;103:544-547.
[Medline]
Faul JL, Ruoss S, Doyle RL, et al. Diaphragmatic paralysis due to Lyme disease. Eur Respir J 1999;13:700-702.
[Abstract]

Winterholler M, Erbguth FJ. Tick bite induced respiratory failure. Intensive Care Med2001;27:1095.
[Medline]

Gomez de la Torre R, Suarez del Villar R, Alvarez Carreno F, et al. Parlisis diafragmtica y artromialgia por enfermedad de Lyme. An Med Interna (Madrid) 2003;20:47-9.

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Imaging of the Diaphragm: Anatomy and Function RadioGraphics 2012;32:E51-E70
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--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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