Nawanna Rodgers-Gazin

 

 

HELLO!  I AM A MOTHER!

“So what?” you ask.  “The world is bulging with mothers.  “Yes, but not every mother gets to watch her daughter’s Life unravel daily due to Lyme disease!  My daughter was bitten by a tick eight years ago near Cordes Junction, Arizona.  Being intelligent, and of very sound mind (after the initial onset of the target rash, painful swelling of the feet/ankles and memory loss), she computer-researched and discovered that she had 34 of the 38 ILADS symptoms of Lyme disease.  Not a whimper…not a snivel…”I’m sure I can get help,” said Little Red Riding Hood, and off she went into the deep dark woods of Arizona’s Health System.  Following is a pictorial of the help (?) she has received and of the big, bad wolves she has encountered in her quest for help.

 

November 1998 – Tick bite and Erythema Migrans (EM) rash from a tick bite at a rest area south of Cordes Junction, Arizona

 

2001 – Painful tingling and numbness in feet, recurrent EM rash

 

2002 – Recurrent EM rash, pain in back of thigh where EM located, pain and swelling in knees and legs, could barely walk, hearing loss, short-term memory loss, saw first PCP who diagnosed sciatica, got antibiotic at urgent care in December for persistent bronchitis fluid in ears and felt better immediately, studied Merck Manual and diagnosed herself with Lyme disease.

 

 

 

2003 – Saw second PCP in January, asked him if she could have Lyme disease, who noted in her records, “I reassured her it does not appear to be Lyme’s disease as there are no endemic ticks in Arizona.”

 

 

 

March 2003 -- Symptoms in remission.

 

November 2003 – Extreme cognitive problems, short-term memory loss, dementia, mistakes in checkbook, wandering around and getting lost.

 

May 2004 – Sinus infection began, still suffers from this more than two years later.

 

August 2004 – Pain and swelling in ankles and feet, could barely walk, sleep apnea, nausea, encephalopathy, short-term memory loss, cognitive dysfunction.

 

October 2004 – Saw same PCP as January 2003, told her he didn’t know why her ankles were swollen, but she should take 4 Ibuprofen 3 times a day for 1 week and wait to see what would happen.

 

 

November 2004 – Saw pulmonologist, the first physician who believed her story about the EM, he ordered a Western Blot based on the vaccine-oriented serologic diagnostic criteria established at the Conference held in Dearborn, Michigan in 1994.  She was positive for 41 kDa only, began her computer research and found no helpful info on the CDC website, but found Joseph Burrascano’s Treatment Guidelines.  She felt so ill she thought she would fade into a coma.  She took some Clarithromycin she had, went to Mexico and purchased Vibramycin (Doxycycline) and began treating herself.  She experienced her first Herxheimer reaction.

 

 

 

December 2004 – Called IGeneX Lab in California, she was ready to travel to California to get help, they referred her to a Lyme-experienced physician in Phoenix.  She prepared a history of symptoms for the doctor, and this knowledgeable doctor provided her with a clinical diagnosis of Lyme disease at her first visit.  He ordered blood tests at IGeneX in California, Western Blot IgM and IgG were positive for Borrelia burgdorferi and erlichia, began intramuscular Bicillin injections on December 31st.  Received 6.5 weeks of injections, which she feels saved her life.

 

 

 

February 2005 – Saw new PCP on state-run health plan who prescribed oral Doxycycline, but refused to consult with the Lyme-experienced homeopathic physician.  PCP said he was on the  “quack list.”  Saw another Lyme-experienced physician outside the state-run health plan who is a D.O.  He also provided a clinical diagnosis and validated the IGeneX test results.  PCP said he would speak to him regarding recommendation of 4-8 weeks of IV Primaxin, left the room, came back and said, “Primaxin is a very expensive medication.  I refuse to treat you for Lyme disease and I don’t think you’ll find anyone on your plan who will.” 

 

 

 

February 2005 -- Saw first infectious disease specialist who told her, “You couldn’t have been bitten by a tick in Arizona, there is no Lyme disease in Arizona, and even if I believed that you were bitten by a tick in Arizona and had Lyme disease, I wouldn’t give you any more antibiotics because you’ve already had enough to kill any bug in your body.”   He diagnosed her with neuropathy of unknown origin and suggested she see a neurologist.

 

 

 

 

 

March 2005 – Saw neurologist on health plan who ordered an MRI and spinal tap, told her to definitely keep taking the oral Doxycycline, MRI was unremarkable except for a small meningioma, spinal tap result was .2 antibodies for Borrelia burgdorferi but negative per laboratory criteria, was referred to another infectious disease specialist and neuropsychiatrist.  Neurologist diagnosed her with anxiety, depression and conversion disorder.

 

 

May 2005 – Saw highly-regarded infectious disease specialist, President of Infectious Diseases Society of America Arizona Chapter, who failed to examine swollen ankles and then noted that he did “not find any active arthritis or chronic synovitis.”  He wrote a letter to her PCP saying that my daughter does not have Lyme disease, although she has “an obsession with Lyme disease and attributes all of her problems to that infection….The patient even provided me with about 100-page document that she has put together regarding Lyme disease and why she believes that she has Lyme disease.  I think the subjective problems that she is experiencing would not be typical for chronic Lyme disease.  The patient has not had serologic confirmation that she has Lyme disease….She also does not feel that the lack of Lyme disease in Arizona is accurate….I can tell from the obsession that she has with the diagnosis of Lyme disease that her disease is in the realm of a psychiatric disorder.  I cannot find any objective evidence for Lyme disease clinically.”  He told her the swelling in her ankles was from syphilis or rheumatoid arthritis.

 

 

 

 

 July 2005 – Saw rheumatologist who told her there is no Lyme disease in Arizona, she told him the Arizona Department of Health Services told her Ixodes pacificus are found at elevations above 6000 feet in Arizona.  He said, “Well, Cordes Junction is not above 6000 feet.  I practiced medicine in Northern California and they have a little Lyme there, but people there have pseudo-Lyme where they think they have Lyme disease, but really they don’t.  They even have a group there called Ticked Off….ha-ha-ha-ha,” he laughed.  She asked him what she could have and he told her, “You don’t have Lyme disease, you could have Fibromyalgia, but you definitely do not have rheumatoid arthritis.”  She asked him, “What is Fibromyalgia?”  He responded by waving his hands about his head saying, “Oh, it’s a neuropsychiatric disorder that women get where they hurt all over.”

 

 

 

  

 

 Thanks for listening!!

 

Nawanna Rodgers-Gazin