my short term dissability letter.

[ewford]

It is unfortunate that in your lengthy denial of my claim that you mistakenly catagorized me as having a mental disorder.  If you had looked at all the supporting information and test results for the coinfections of babesia and bartonella you would have seen an unmistakeable pattern.  Your contention is that I suffered from some undisclosed mental disorder and that my treatment for such disorder did not fit your guidelines, nor was there a positive Western Blot for Lymes disease.  Therein lies your problem.  If you follow the symptom list and the timeline from appx Oct 09 to my visit with Dr Jemsek and subsequent treatment, you will see an entirely different scenario.  

  Let me make some things clear.  I suggest you read these thoroughly since you say you take your job seriously.  Columbia University has an excellent site for information.  I suggest you familiarize yourself about it.   http://columbia-lyme.org/index.html

1.  Confirmation by Western Blot.  The CDC states CLEARLY that the confirmatory WB is for epidemiologic  REPORTING STATISTICS only.  A neg result is not indicative of a non-illness.
  
From Columbia University medical Center:

"The FDA recommendation is that the diagnosis of Lyme Disease be made on clinical grounds rather than relying only on blood testing for the diagnosis."

From the CDC on reporting Infectious diseases: Lyme

"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis".  In other words, it is the clinicians judgement that is to determine illness, considering symptoms, endemic area, and no other reasonable explanation.

It is clearly stated,20-40% of people never get a rash.  You use having a rash as a guideline.  The CDC states that is a "no brainer" for a doctor to begin treatment.  But, it is also noted that some people do not meet the criteria set for REPORTING.

This from :Paul Mead, M.D., M.P.H.
Medical Epidemiologist
Division of Vector-Borne Infectious Diseases
National Center for Infectious Diseases,
Center for Disease Control and Prevention,
U.S. Department of Health and Human Services

"No surveillance case definition is 100% accurate. There will always be some patients with Lyme disease whose illness does not meet the national surveillance case definition. For this reason, CDC has stated repeatedly that the surveillance case definition is not a substitute for sound clinical judgment. Given other compelling evidence, a physician may choose to treat a patient for Lyme disease when their condition does not meet the case definition."

Symptoms for localized Lyme:  From the NIH.gov Medline Plus
http://www.nlm.nih.gov/medlineplus/ency/article/001319.htm

[ree427]

I heard it's easier to get disability from being labeled with Fibromyalgia and Chronic Fatigue Syndrome than Chronic Lyme. Just a suggestion. I got it the first time and didn't have to appeal. I know it must be frustrating. I pray I don't get kicked off. So far so good. I wish you guys much luck and hope you get it.

[drsdonthelp]

I am still in the "pending" stage on my appeal for SSD, so if you don't mind and I get more facts from my LLMD, I might take you up on your offer to quote some of your findings that you have listed here, in case I need to get more information for them.

It is the hardest thing to get SSD to begin with, even with multiple health issues, but then when you are on it for a year and then they decide to "kick you off of it" without even looking at all of the facts, it seems like you have to go through the whole dang process again.

Sorry, I tend to do run on sentences alot!! I do love how you write !!
Thanks for sharing this!
Pam :)

[ree427]

I got Social Security Disability for "Fibromyalgia" and "Chronic Fatigue Syndrome"...Whatever works.

[ewford]

Spell check, cut and paste make a difference.  I thank you all for the positive comments.  Took me awhile to digest what the claims person wrote, but knew I had enough NIH, CDC, other research institutions to "out research them".  I think they believe that we are too feeble to mount a response.  If anyone wants to use some of this, they are more than welcome if it pertains to them.

[nutrinut_bob]

I agree, good job, but don't over do it.  If you can work at a keyboard, read and write, in the minds of some, you're not disabled, you just need a different job.  I note you are applying for a short term disability, wish you luck.  Try to avoid going off on the examining doctor, though that might help you given the situation.

[JackieCalifornia]

Awesome.  Just awesome.

[drsdonthelp]

WOW, YOU WROTE THIS!!! I AM IMPRESSED!! I didn't know you were going for SSD. Good luck with your appeal that I assume you are doing with this letter. I wish I could write like that!

Pam

[ewford]

Now to my HHV6 high Titre, which was ignored as well.  HHV6 is a virus in the herpes family that 95% of the world harbors after age 3. It is commonly known as "Sixth Disease"  It remains dormant unless the immune system is suppressed by a,or several,infections.  Each infection increases the odds of further suppressing the immune system of the host.  There is compelling evidence by researchers an elevated HHV6 titre is linked to MS and Immunosuppresence among others.

http://www.hhv-6foundation.org/conditions-associated-with-hhv-6

  Now considering my Infectious Disease Dr, Dr Jemsek, who has been treating Immunesuppressed/Immunedysfunctional patients for 30 years and helped write the guidelines on treating HIV/AIDS/ Immunsuppressed patients for the CDC/IDSA.  He also has been treating and diagnosing Lymes disease through clinical symptoms, genetic markers, pertinant lab results  with and without a Erythmia Migrans rash (20-40% never get the rash as per the CDC).  He also realizes the deficiencies of the Western Blot test in that  A.  Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system. and B. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

Here are more reasons that are verifiable conditions

1. Recent infection before immune response

2. Antibodies are in immune complexes

3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)

4. Spirochete are deep in host tissue

5. Blebs in body fluid, no whole organisms needed for PCR

6. No spirochetes in body fluid on day of test

7. Genetic heterogeneity (300 strains in U.S.)

8. Antigenic variability

9. Surface antigens change with temperature

10. Utilization of host protease instead of microbial protease

11. Spirochete in dormancy phase

12. Recent antibiotic treatment

13. Recent anti-inflammatory treatment

    In regards to your statement about detoxification, and that I was to "detox with depline, methycholamine, green tea and Epsom salts to decrease overall inflammatory quotient"  As you are probably not aware, skin is part of the integumentary system in which dead cells and sweat is excreted.  Epsom salts help pull out some of those toxins.  Deplin is Folic Acid, it's used as a supplement for RED BLOOD CELLS since Babesia has a propensity to damage and infect the cells.  Gabapenten (Methycholamine) is used for nerve pain.  It is a universally known fact Lymes causes a chronic inflammatory response.  The goal is to decrease inflammation and increase the Immune System response while taking Macrolides to inhibit DNA replication and hold the bacterias in check/ kill them.  You act, in my opinion as if this is some obscure treatment regime.  This is a multisystemic infection that needs to be addressed from multiple angles because the infections went undiagnosed/missdiagnosed.

  It wasn't until I contacted several Nobel Prize nominees, one with 3 World Renown Citation papers, 600 peer reviewed and accepted papers, winner of several prestigious awards including the Bourroughs Welcome Award , the second that discovered the HHV6 Virus, that I was told "No standard medical doctor or ID is ever going to figure this out.  There is a distinct possibility you have one or more chronic intracellular bacterial infections coupled w/ now unsuppressed viral infections"

  My symptoms began in Oct '09 and have persisted through now.  They have somewhat subsided, since I have been on the Macrolides and Immune system boosters/enhancements.    Bobbie, this is the situation you and I are both in.  You saw me as a "psych" case because of my symptoms and I had been given benzodiazepines by several physicians.  You can try to maintain that view.  I, on the other hand can prove several things.  My illness started around Oct 09.  I went missdiaged/undiaged from Oct 2009 till Dec 2010 at which point Dr Squires said he thought I poss had Lymes or at least an Immunosuppresive illness.  He suggested I see an ID Dr that specialized in the multi-symptomatic illness.  He ordered the IGENEX tests for Lymes and co-infections.  Showing pos for babesia, Bartonella and a IFA Borrelia Burgdorferi.  With the neg WB, he suggested I have someone with much more experience perform the clinical diag.  

Since I had used an extensive amount of sick time/vacation time with this illness it was imperative I continue coming to work to retain my State inspection license and qualifications as a Ford Senior Master Technician.  Meanwhile, my body was falling apart and was constantly under a barrage of stabbing sensations, photophobia, neurosis, fasticulations, chronic headaches, etc.  I could not follow a flowchart to solve an electrical problem, was constantly forgetting to do simple mechanical tasks, working on customers vehicles that carried the owner and their families, missplacing vehicle parts.  It came to a head after I could not install a radio properly on one car and on another left the oil cap off causing the oil to spew all over the engine compartment.  I was asked to consider a leave of absense and to find out what was wrong with me before I hurt someone or myself.

I researched thoroughly as much as my body would allow, My symptoms of crushing fatigue, lethargia, chronic headaches, eye pain, occasional hearing issues, chronic sore throat, sore lymph nodes, neck stiffness/cracking, pain on urination, gonadal pain, joint and muscle pain, flatulations of 75 times a day (appx), IBS symptoms, constipation/diarhea, fasticulations, retching/vomiting, phobias, OCD symptoms, vertigo, multichemical.sensativaties (diesel fumes, gasoline,solvents, etc)   I contacted Dr Jemsek's office for an appt and was granted one.  More tests were run to look for genetic markers, and look for certain results that showed results consistant with confirmed cases that were WB pos.  

I have been on macrolides and Immune supps for almost three months.  I continue to improve, but there is a possibility that the illness went on for too long before there was Antibiotic treatment.

  Considering what I can prove, as to what you can prove, I think I have a good chance of winning in a legal dispute.  The Judge will look at your "finding" then look at mine.  Mine makes alot more sense than yours. And is based in fact.  I wonder if this were disputed, in a court of law, would it come to light other "denials" that happened under the same circumstances.  I hope that has not happened.

I expect an acknowlegement of receipt of this e mail, please.  If not, I will be under the impression that you ignored my rebuttal/response.  I would also request you insert a copy of this in my file.  I will keep one for my Atty.


Sincerely

[ewford]

Now, onto the Lyme disease coinfections that you completely ignored that I had positive test results for.  Babesia and Bartonella. These are KNOWN pathogens in Lyme disease making it more co-morbid and pathogenic and serious complications have been known to arise in undiagnosed/untreated illnesses.  When a patient tests POS for even one of these, the Physician is instructed to consider a Lyme diagnosis.  When 2 are involved, It is an extremely good indicator of Lyme.  Borrelia create immunosuppressed conditions  Which makes the coinfections more severe.

From Columbia University:  On Babesia:

http://columbia-lyme.org/patients/tbd_babesia.html

"In patients with a complicating condition, however – such as underlying immunosuppression – the disease course can be severe and potentially fatal. Some species of Babesia, such as B. divergens, appear to be more virulent than others.  Although primarily transmitted by tick bite, babesiosis can also be acquired via blood transfusion and maternal-fetal transmission."

"In immunocompetent patients, symptoms of babesiosis usually begin 1-6 weeks after inoculation and are non-specific. Typical early manifestations include intermittent fevers accompanied by fatigue and malaise, headache, chills, and myalgias. Nausea, vomiting, reduced appetite and depression can also occur."

"The fact that the early symptoms of babesiosis are largely non-specific makes diagnosis difficult. Nevertheless, physicians encountering a patient from an endemic area who presents with fever and a viral-like illness, especially in the summer months, should be alert to the possibility that babesiosis may be responsible for the patient’s symptoms"

From Columbia University: Bartonella:

http://columbia-lyme.org/patients/tbd_bartonella.html

"The full clinical spectrum of all Bartonella infections remains to be elucidated, but includes conditions as diverse as hepatitis, endocarditis, encephalopathy and meningoencephalitis"

"The evidence for ticks as vectors of Bartonella organisms is circumstantial but fairly strong. Recent studies in both the United States and Europe have found that Ixodes ticks harbor B. henselae in addition to Borrelia, Babesia and Anaplasma organisms"

"In immunocompetent people, the systemic symptoms of cat scratch disease are usually limited to regional adenopathy, though it can also cause fever and, more rarely, eye disorders, hepatosplenic infection, osteomyelitis, and encephalopathy. Immunocompromised patients, such as those with HIV, can develop more serious manifestations such as endocarditis and bacillary angiomatosis (tumor-like masses caused by the pathological proliferation of blood vessels)."

"The clinical manifestations of tick-transmitted bartonellosis are essentially unknown. They may resemble cat scratch disease, take other clinical forms, or be benign. It is also unclear if Bartonella co-infection with other tick-transmitted organisms can result in more serious illness; some of the few reported cases of concurrent B. burgdorferi and B. henselae infection in the medical literature appear to suggest this could be the case. Thus, it may be prudent to consider the possibility of Bartonella co-infection in cases of poorly resolving or apparent relapsing Lyme disease"

" Tick-transmitted Bartonella may be a more serious matter, however, since the possibility of co-infection is always present

[ewford]

Symptoms of early localized Lyme disease (Stage 1) begin days or weeks after infection. They are similar to the flu and may include:

Body-wide itching
Chills
Fever
General ill-feeling
Headache
Light-headedness or fainting
Muscle pain
Stiff neck
Symptoms of early disseminated Lyme disease (Stage 2) may occur weeks to months after the initial tick bite. They may include:

Paralysis or weakness in the muscles of the face
Muscle pain and pain or swelling in the knees and other large joints
Heart problems, such as skipped heartbeats (palpitations)
Symptoms of late disseminated Lyme disease (Stage 3) can occur months or years after the initial infection. The most common symptoms are muscle and joint pain. Other symptoms may include:

Abnormal muscle movement
Muscle weakness
Numbness and tingling
Speech problems
Decreased concentration
Memory disorders
Nerve damage
Numbness
Pain
Paralysis of the face muscles
Sleep disorders
Vision problems
ALL of these symptoms , even in a chronological order, were occuring as I was being missdiagnosed/undiagnosed and treated as having a, as you call it, "Pychiatric impairment"
Here is a American Journal of Psychiatry citation paper of Neuro Borrellosis (or neurologic lyme disease, which you say my symptoms were not related, but a "mental condition"

http://ajp.psychiatryonline.org/cgi/content/abstract/151/11/1571


"Lyme disease is a multisystemic illness that can affect the central nervous system (CNS), causing neurologic and psychiatric symptoms. The goal of this article is to familiarize psychiatrists with this spirochetal illness. METHOD: Relevant books, articles, and abstracts from academic conferences were perused, and additional articles were located through computerized searches and reference sections from published articles. RESULTS: Up to 40% of patients with Lyme disease develop neurologic involvement of either the peripheral or central nervous system. Dissemination to the CNS can occur within the first few weeks after skin infection. Like syphilis, Lyme disease may have a latency period of months to years before symptoms of late infection emerge. Early signs include meningitis, encephalitis, cranial neuritis, and radiculoneuropathies. Later, encephalomyelitis and encephalopathy may occur. A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder. Depressive states among patients with late Lyme disease are fairly common, ranging across studies from 26% to 66%. The microbiology of Borrelia burgdorferi sheds light on why Lyme disease can be relapsing and remitting and why it can be refractory to normal immune surveillance and standard antibiotic regimens. CONCLUSIONS: Psychiatrists who work in endemic areas need to include Lyme disease in the differential diagnosis of any atypical psychiatric disorder. Further research is needed to identify better laboratory tests and to determine the appropriate manner (intravenous or oral) and length (weeks or months) of treatment among patients with neuropsychiatric involvement. "

Funny that you said that I "expressed symptoms of rage,decreased concentration,and OCD tendencies which would be charachteristic of a mental nervous condition and not charachteristic of Lyme Disease"  All the above states quite differently.