Veterans with Lyme Disease
Update 1: This story is published on my linkedin account. Within a matter of days it received over 300 views and important supporting comments. Please visit my linkedin page to see comments https://www.linkedin.com/pulse/director-va-hospital-walks-out-ruben-sims/ . This story represents the struggle veterans with Lyme disease face receiving healthcare at military and VA healthcare systems. Your donations will help me confront these issues at every opportunity. The title of the story is:
Director of VA Hospital Walks Out.
From: Lee R. Vickson (ADA: Ruben Lee Sims)
[email redacted]
To: Congressman Pete Aguilar
Thank you for inviting me to the Veterans Advisory Council meeting at the Loma Linda Veterans Hospital. Again, I apologize for arriving late; but, my VA doctor appointment was at 9:30 a.m. and ran over. Also, I left the meeting early because I was scheduled for lab work, X-rays, knee braces, medications, and other requirements the doctor asked me to complete that day. So, I was crunched for time.
As I mentioned in the meeting, this was my first appointment at the VA in nearly 3 years. I had to abandon the VA in 2016; because, the VA was incapable to diagnose and treat my Lyme disease. After denying I had Lyme disease in a letter to the President in 2015, the VA temporarily hired a Lyme disease specialist from the Hospital of Special Surgeries in New York in January 2016. The specialist reviewed medical records, examined me, and clinically diagnosed my Lyme disease. The specialist provided the VA the diagnosis and treatment plan before she returned to New York. Further, she provided me her contact information and invited me to be treated in New York if the VA failed to treat me. However, I simply could not afford to travel to New York for treatment.
Initially, the VA agreed to the diagnosis and treatment plan; but, rejected the diagnosis and refused to follow the plan after the specialist returned to New York. Thereafter, the VA said I did not have Lyme disease and discontinued my treatment. The VA offered to send me to their Infectious Disease Department for reevaluation for Lyme disease. However, I rejected the offer and chose to abandoned the VA instead; because, I had been under VA care for 33 years and seen numerous doctors. However, not a single VA doctor considered Lyme disease as a differential diagnosis in over 33 years. So, I was not willing to start the cycle of misdiagnosis and mistreatment all over again under the VA system. Therefore, I abandoned the VA nearly blind, in tremendous pain and suffering, and expecting to die if I did not get proper diagnosis and treatment.
Thereafter, I located a Lyme disease doctors in San Diego, about an hour and a half from my home. I was diagnosed with Lyme disease again; and, I was treated for nearly two years with great results. Results matter!!! However, my vision was still troublesome. Therefore, I was referred to a Tick-borne Disease Specialist in Beverly Hills. She diagnosed Lyme disease, Bartonella, and Babasiosis (a form of malaria).
Bartonella and Babasiosis are common co-infections that often occur with Lyme disease. The doctor in Beverly Hills has been treating me since June 2018. I travel about 6-hours roundtrip for monthly appointments. Under her treatment, I have improved even more. Remarkably, my vision has been restored to near normal; decades of night sweats have nearly resolved; and, persistent joint swelling and stiffness are nearly resolved. The improvement is remarkable. At my last office visit, all my lab work was within normal limits for the first time in decades. Results matter!!!
In comparison, under VA care, they unnecessarily replaced my left eye lens as treatment for my vision problems and planned to replace the right eye lens. However, today, my left eye has a disturbing and distracting field of spots on the lens and is my worst eye. The vision in my left eye has deteriorated. On the other hand, with treatment for Babasiosis, my right eye is near normal and getting better. Results Matter!!!
On average, it cost me about $1,000 a month for care under my current private doctor. So, I returned to the VA because Lyme disease has left me with arthritis throughout my body and other issues I believe the VA can treat. However, I will continue my treatment for Lyme disease, Bartonella, and Babasiosis with my private doctor; so, I can maintain my current health status; because, under the VA, I would surely die. However, it is tragic that I and other veterans must pay our own medical bills for Lyme disease and co-infections incurred while serving on active duty.
When I spoke at the meeting I was not speaking just for myself. However, I was speaking based upon 36 years personal experience with Lyme disease and co-infections on behalf of all veterans with Lyme disease in the same situation. I am angered because, today veterans are having the same experience I have had for nearly 4 decades. This is unconscionable. So, I am taking a stand for my fellow veterans. I will be advocating for all Veterans with Lyme disease and co-infections likely for the rest of my life.
At the meeting, you witnessed the VA director respond with nervousness and discomfort when I discussed Lyme disease. He was visibly shaken by my questions. His excuse was; “I am not a doctor.” However, it was more important for him to leave the room to make/take a phone call than address the issues. He simply did not know how to respond to Lyme disease questions. However, I did leave information with supporting internet links with his apparent assistant. However, I doubt any actions will be taken.
In comparison, consider this reality. Believe it or not, the director’s response is similar to responses by VA doctors when they are confronted with Lyme disease questions. Their excuse is; “I do not understand Lyme disease.” You can test this yourself. Just ask any VA doctors whether or not they understand Lyme disease. The likely response is either no or just take the CDC tests. Surely, they are doctors; but, they have not been trained to clinically diagnose Lyme disease. Therefore, doctors react similar to the director. They are visibly shaken and uncomfortable with Lyme disease. Consequently, veterans with Lyme disease are misdiagnosed and mistreated.
Over the years, I developed a habit of asking VA doctors whether or not they understood Lyme disease. Not a single doctor stated they understood Lyme disease. Literally, I have had VA doctors drop me as a patient because I asked to be evaluated for Lyme disease. I have had them accuse me of drug seeking; because, the VA had addicted me to opiods through decades of misdiagnosis where they prescribed addictive opiods and sleep medications. (I freed myself from all addictions after treatment for Lyme disease). Results Matter!!!
Further, they have refused to perform tests that could have confirmed the disease. I have had visits that resulted in verbal confrontations; because, the doctor was insulted that I suggested I had Lyme disease. I have walked out of the emergency room during a potential Lyme disease related heart attack; because, the doctor sarcastically said: “You do not have Lyme disease unless I say you have Lyme disease.” Then, I was insulted, so, I unplugged myself from the monitoring equipment and walked out; because, I would rather die outside the VA than be insulted inside. Further, they referred me to psychiatry for evaluation. The evaluation did not reveal any psychiatric issues.
By the way, I had those Lyme related heart issues since 1985. They were so frequent that I ignored them for years at risk of dying. However, they worsened in 2014-2015; so, I started going back to the emergency room. Significantly, I have not had a single episode since I began treatment for Lyme disease in 2016. Results Matter!!!
Significantly, President Obama responded to my request for help in 2015. The VA responded to the Presidential inquiry and set up an examination. First of all, I asked the doctor who examined me whether or not he understood Lyme disease. He replied; “No, I don’t know any doctors here that understands Lyme disease.” I then asked for a referral to a Lyme disease specialist outside the VA. He replied; “No, I am the best you got.” That sucks!!!
So, the doctor asked me to explain why I thought I had Lyme disease. With 33 years of medical records in my hands; and, approved published Lyme disease clinical diagnostic and treatment guidelines: I explained my comparison between my records and the guidelines. In my view they were a perfect match.
However, the doctor went online to read, learn, and try to understand Lyme disease. Consequently, he used Lyme disease symptoms to deny I had Lyme disease. Thereafter, the head of the VA responded to the Presidential inquiry that I did not have Lyme disease. A few months later the Lyme disease specialist they hired from New York clinically diagnosed my Lyme disease. Clearly, this conflicted with their response to the President. What now???
However, the VA refuses to allow veterans to see Lyme disease or tick-borne disease specialists outside the VA. This creates a perpetual loop of misdiagnosis for Veterans with Lyme disease that may ultimately lead to suicide. Therefore, ask yourself; how can a suicide hotline save these veterans when it simply returns them to a cycle of misdiagnosis and mistreatment? In my view a suicide hotline for veterans with Lyme disease simply promotes suicide.
Regarding the CDC surveillance tests the VA uses to diagnose Lyme disease. I briefly discussed these tests with the VA director at the meeting. The tests are designed to detect one species of Lyme disease (Borrelia Burgdorferi) found in Lyme, Connecticut in 1975. However, there are 52 known species of Borrelia and 21 of those species are related to Lyme disease.
Consequently, the CDC surveillance tests will not detect 51 species of Borrelia and 20 of the species related to Lyme disease. Therefore, any veteran with any species of Lyme disease other than Borrelia Burgdorferi will test negative and will not be diagnosed with Lyme disease. This is 51 reasons why the CDC tests are not suitable for diagnosis of Lyme diseases in VA or any other medical system. This is 51 reasons why VA doctors should be trained to clinically diagnose Lyme disease instead of relying upon the CDC tests. This is 51 reasons why the CDC multiplies CDC confirmed tests by 10 to estimate the prevalence of Lyme disease. This is 51 reasons why the VA Lyme disease data will under represent the prevalence of veterans with Lyme disease. This is 51 reasons why 90 percent of veterans with Lyme disease will be misdiagnosed and face the same consequences I faced for over 3 decades. I hope you will help!!!!!!!
Consequently, veterans with Lyme disease are literally dying on the doorstep of the VA. We are among the homeless, unemployed and underemployed, addicted to opiods and sleep medications, and suicide statistics. This has to change!!!
The Tick-borne Disease Working Group established by Congress submitted their first report to Congress in December 2018. I am on page 8 of that report as Ruben Lee Sims. I encourage you to review the TBDWG report and reach out to veterans with Lyme disease with your support. Many problems veterans face will continue to escalate until the issues with Lyme disease are resolved. Connect the dots!!!
Therefore, I recommend the VA either train their doctors to clinically diagnose Lyme disease; or establish their own tick-borne disease center; or hire Tick-borne Disease Specialists within the VA; or allow veterans to seek care outside the VA at VA expense. This is what we must do to reduce veteran homelessness, addiction to opiods and sleep medications, unemployment and under employment, and suicides to improve the quality of life for veterans overall. A suicide hotline has not and will not accomplish these goals.
I have attached some document for your review. They include important links to documents used in the email.
Sincerely,
Lee R. Vickson (AKA: Ruben Lee Sims)
Advocate for Veterans with Lyme
Disease Disabled Veteran
Veterans with Lyme Disease-Dying on the Doorsteps of VA and Military Healthcare Providers
The photo I chose for this campaign is an August 29th, 1983 newspaper article about me. That year I became the first USAF enlisted man to become a Certified Cost Analyst. This photo is important because it represents my final achievement in my Air Force career. At the time the photo was taken I was failing with Lyme disease for about a year and the long list of achievements described in the article no longer mattered. My 14-year career was doomed. That same year I went AWOL, attempted suicide, was committed to a psychiatric ward, and faced military courts martial. In 1984, I was discharged as a hopeless hypochondriac.
However, I had Lyme disease and military doctors knew nothing about Lyme disease. I was literally dying on the doorsteps of military healthcare. As a result, in 1984 I became an unemployable homeless disabled veteran. Today, nearly four decades later our military men and women face the same fate. This must stop.
My name is Lee R. Vickson, also known as Ruben Lee Sims. I served 14-years and 14 days active duty in the United States Air Force. I am a Vietnam Veteran. I was a career man with many achievements and high expectations for the future. However, my career ended after I was bitten by ticks in 1982. For two years after, I endured the worst two years of my military career that ended in disaster in 1984. You can read my story online at https://www.lymedisease.org/military-lyme-mld/ or visit my twitter page at https://www.twitter.com/rubenleesims for more details.
To understand medical challenges of Lyme disease I recommend you watch this video. https://www.youtube.com/watch?time_continue=13&v=0a3sBmleRQo
In 1982, I contracted Lyme disease, Babasiosis, Bartonella, and other pathogens after tick bites in the very same year the pathogen that causes Lyme disease was discovered. The devastation began. Lyme disease research was in its infancy. There were no defined symptoms, disease patterns and progressions, or diagnostic tests or diagnostic and treatment guidelines and very limited medical knowledge about locations and prominence of the diseases.
In other words, I got Lyme disease when only a few doctors in the world even knew it existed. This may seem ridiculous because the prehistoric man found in Italy (Otzi) had Lyme disease over five thousand years ago (https://www.livescience.com/18704-oldest-case-lyme-disease-spotted-iceman-mummy.html). Lyme disease has clearly existed since pre-historic times.
However, Lyme disease was only discovered in the United States in the late 20th Century and science still does not have a full understanding of Lyme disease. Consequently, there is literally a Lyme Disease War as doctors and scientists try to benefit from copyrights, patents, products, procedures, and controls that allow them to profit from a disease that has become a pandemic, (over 400,000 cases each year based on CDC estimates).
Veterans are among the casualties of the Lyme Disease War; because, Veterans typically rely on military and VA healthcare systems that are always the last to update medical care for veterans. For example, most veterans died before the VA recognized diseases related Agent Orange exposure in Vietnam. Similarly, most veterans will die before the VA understands how to fully diagnose and treat Lyme disease. Likewise, the VA did not recognize Lyme disease until 1996, 14 years after I contracted the disease. Even today veterans with Lyme disease are literally rejected by VA healthcare guidelines.
From my experience, VA doctors are not trained to diagnose and treat Lyme disease. Over several years, every doctor I asked about Lyme disease would reply they know nothing about Lyme disease or they go online and try to learn about Lyme disease during my short medical visit. Many doctors are intimidated and become defensive if you ask about Lyme disease. One doctor dropped me as her patient after I suggested I had Lyme disease.
For example, in 2015, I asked the President to intervene in my Lyme disease diagnosis and treatment. He did. In response, I was scheduled an appointment to respond to the President’s Inquiry. My first question to the doctor was; “Do you understand Lyme disease?” He arrogantly replied; “No, I do not know any doctor in this hospital that understands Lyme disease; so, I am the best you got.” Then, I asked; will the VA allow me to see a Lyme disease specialist outside the VA? He replied; “No, we don’t do that.” My life was clearly in competent hands???
So, here I was prepared with all my medical records dated back to 1982 and medical literature that clearly suggested I had Lyme disease. The doctor went online and tried to learn about Lyme disease as he allowed me to explain why I thought I had Lyme disease. Clearly I had his undivided attention??? Ultimately, the doctor used established, well defined Lyme disease symptoms to deny I had Lyme disease. He replied to the President that I did not have Lyme disease. He was wrong.
However, a few months later the same VA hospital temporarily hired a Lyme disease specialist from New York to evaluate several suspected Lyme disease cases. That specialist diagnosed my Lyme disease and began treatment. I suppose the VA expected the specialist to confirm their diagnosis that I did not have Lyme disease: but, that did not happen. Now there was a dispute between VA doctors with no Lyme disease training and the Lyme disease specialist that was trained; and, diagnosed and treated Lyme disease routinely in a Lyme endemic area. Unbelievably, I was caught right in the middle of a Lyme disease War (the Twilight Zone).
Clearly, the VA’s reputation was harmed by the Lyme disease specialist. They had written a letter to the President proclaiming I did not have Lyme disease; now, a private Lyme disease specialist contradicted that letter. Clearly, this suggests that they lied to the President and the VA’s best option was incompetent to diagnose and treat Lyme disease. Clearly, my life was in the wrong hands???
Looking back, as a member of the military, I had a disease that essentially no one knew about or understood. That left me vulnerable to every speculation, ridicule, punishment, criticism, a military man/woman can imagine. With tick bites, I went from an outstanding career Senior Non-Commission Officer; well educated and established expert in my field; outstanding martial arts instructor, long distance runner, and A/B racquetball player; and, a well liked and respected person to a total malingering failure. The transition was dramatic destruction both physically and mentally. I was trapped in the twilight zone now known as tick-borne disease (Lyme disease and co-infections).
So, at 14 years and 14 days my military career ended in disgrace. After two years of suffering through misdiagnosis and mismanagement of my disease I was diagnosed as a hopeless hypochondriac with a psychogenic pain disorder. Needless to say, there is no treatment for that. The only treatments I was offered was military punishment including courts martial and permanent commitment to a psychiatric ward. Due to my military reputation the Base Commander refused to honor the Squadron Commander’s courts martial request. However, it took a Congressional Inquiry to prevent the military from permanently committing to the psychiatric ward at Eglin AFB, Florida.
Thereafter, I was placed on 18 months temporary disability retirement; and, I was discharged from the United States Air Force with several tick-borne diseases without diagnosis or treatment. I was sick and unable to work. What was I supposed to do? Obviously the discharge forced me into homelessness. So, I was sick, unemployable, and homeless like many veterans today. How was I supposed to get back on my feet and start over again? I applied for social security; but, I was denied; because, you do not get social security for being a hypochondriac. I applied to work at the Post Office. Even though I aced the test I was told I could not do the job because of my illness. Clearly, they did not hire hypochondriacs at the post office.
However, the Post Office was right. I knew I could not do the job; but, it had nothing to do with being a hypochondriac. I was physically unable to work. I was riddled with muscular and nerve pain and muscle spasms from head to toe. I was a medical wreck. I could not sit or stand very long. I could not sleep well and was extremely fatigued. I was cold intolerant and experienced frequent episodes of shortness of breath, and heart and chest pain. But, I had to find a way to survive. However, I had no answers. I had to get a proper diagnosis and treatment or I was doomed forever. I had 18 months to do it or I would lose my temporary disability retirement benefits too.
After leaving the Air Force, the Veterans Administration was supposed to provide my medical care and disability benefits. But, this was a major disappointment too. My hypochondrias diagnosis was rated at zero percent disability. So, there were no VA benefits for me unless I obtained a proper diagnosis.
Therefore, I continued to seek diagnosis and treatment through military hospitals and retirement health insurance benefits at major medical universities in Southern California. This resulted in several significant diagnoses. At military hospital I was diagnosed with polymyalgia rheumatica (fibromyositis); multiple civilian doctors diagnosed fibromyalgia/fibrositis and chronic fatigue syndrome; another civilian doctor diagnosed Radiculitis; and another civilian doctor diagnosed peripheral neuropathy. Also, a muscle biopsy concluded that I had a nonspecific muscle disease, and a skin biopsy concluded that I had chronic dermatitis. Ironically, today all these early diagnoses combined together are different components of Tick-borne disease (Lyme disease and co-infections).
Ironically, not a single doctor even considered Lyme disease as a differential diagnosis. Lyme disease did not exist in their diagnostic schemes. Further, not a single doctor concluded I was a hypochondriac. However, that was my label and that was the diagnosis I had to overcome to keep my disability retirement and obtain VA benefits. That was not easy.
After 18 months my temporary retirement came up for reevaluation. I had all my medical records including supporting letters from several doctors. I was prepared to correct my military records once and for all. Initially, I was sent to the March AFB military hospital psychiatric department for reevaluation in Moreno Valley, California. The doctor reviewed my records but admitted he did not have knowledge of the diagnoses in my records and referred my records back to the review authority in Texas. He denied that anyone at March AFB was capable to diagnose the disorders. Rejection 1???
The second reevaluation was at Balboa Navy Hospital in San Diego, California. The doctor reviewed my medical records then commented, “This looks like Lyme disease.” Then he asked if I had lived in the northeastern United States. I replied, “No.” Then he said, I could not have Lyme disease because it does not exist in California. He was wrong. This was 1986 and according to the California Department of Public Health the first case of Lyme disease in California was documented in 1979.
However, Lyme disease had first been discovered in the United States in Lyme Connecticut and doctors that discovered the disease made the overbroad assumption that it did not exist anywhere but the Northeastern United States. So, in 1986, my true diagnosis was denied through misinformation from doctors who discovered Lyme disease. Again, the Navy doctor declined to reevaluate my disability and referred me back to the review authority in Texas. Rejection 2???
So, here I was each doctor declined to reevaluate my disability and passed the buck to someone else. This was the twilight zone of Lyme disease and I was deeply within its grasp.
Thereafter, I was ordered to travel to Lackland AFB, Texas to Wilford Hall Medical Center for reevaluation (premier military medical center???). That was the climax of my reevaluation nightmare. When I arrived at Wilford Hall, I was immediately locked up on a secure psychiatric ward. I was told I would be there for days until I complete the full reevaluation. However, this was an outright abuse of power. My freedom was taken away from me; and I was essentially kidnapped and imprisoned for what should have been an outpatient reevaluation. Obviously, someone had decided to punish me on my third reevaluation attempt. Someone had decided to make this reevaluation as demeaning as possible.
However, I was no longer active duty. I knew they had no authority to lock me up on a psychiatric ward. So, I made it clear that I would not stay there. I demanded that they release me; but, they would not. They said, only the Hospital Commander could release me. I told them that I would wait until the end of the workday for the Commander’s decision to release me; but, I would not spend the night on a secured psychiatric ward with disturbed people wondering in and out of my room in all stages of psychiatric distress. I vowed that I would walkout if the Commander did not release me.
By the end of the day they had not voluntarily released me; so, I walked to the security doors with my bags in hand and demanded that they open the doors and allow me to leave. They refused. However, as I walk toward the counter a clerk walking towards me told them the Commander had released me to an unsecure ward. So, I was taken to what was supposed to be an unsecure ward; but, I learned that I was still locked up at night. One night I attempted to take a walk because I could not sleep and the doors were locked with no one there to open them. I was still a prisoner. I was still kidnapped. Now, I was angry. They had lied to me and taken my freedom again.
The next day, I told the attendant that I was supposed to be on an unsecure ward, not locked up at night. That did not go over well. Now everyone was angry at me because I refused to be locked up. The same day the doctor came to reevaluate my temporary disability. The doctor had reviewed some of my medical records and said I had a good case for fibromyalgia and chronic fatigue syndrome but no one at that hospital was willing to help me. He said; instead, they would convene a military hearing to decide my future. He comment; “you should have left well enough alone.” Then, he walked away. In a matter of minutes my reevaluation ended and my destiny was sealed with total disregard to my medical diagnoses, military regulations, and applicable military and federal disability laws. Instead, I was railroaded by angry medical doctors who sought to punish and imprison me rather than diagnose and treat me. Rejection 3???
Thereafter, they provided me a military attorney and proceeded with the hearing. During the hearing the attorneys and the judge laughed and joked like drinking buddies at a local bar as they took away my disability retirement. The procedure was a clear mockery of justice clearly intended to give the illusion of a fair hearing. It was a joke but I wasn’t the one laughing, everyone else laughed.
So, instead of a disability reevaluation, I was put on trial and convicted of being a hopeless hypochondriac and unfit for military duty and disability retirement after an otherwise over 14-years of stellar service to my country. Rejection 4???
Needless to say, they had already decided to take away my temporary disability benefits no matter how sick I was in total disregard to diagnoses from prominent medical Professors/doctors at several well known major medical universities in California. This was a violation of military disability regulations and federal disability laws; but, there was nothing I could do about it. I was not willing to sacrifice my freedom, dignity, and pride to satisfy some arrogant commander who wanted to make me suffer more than I already had. As a result, I lost my disability retirement completely. However, my dignity and pride remained intact. Now, that was all I had.
Nonetheless, I had been diagnosed and treated by the Chief Rheumatologist at a University Medical Center intentionally; because, I knew he was the Chief Rheumatologist at the VA too. So, I suspected he was my best choice to obtain my VA benefits; because, of his influence at the VA. Also, it was a risk. Because, if he had decided I was a hypochondriac, I was doomed. However, it was a risk I had to take.
After, I returned from my disability reevaluation, I asked the Rheumatologist to evaluate me for Lyme disease based upon the comment the doctor made at Balboa Navy Hospital in San Diego. He replied; “I do not know how to evaluate you for Lyme disease; and, I do not know where to send you to be evaluated for Lyme disease.” So, in 1986, the Chief Rheumatologist at a world renowned medical university hospital and medical center did not know anything about Lyme disease. Therefore, I was never evaluated for Lyme disease and I never asked about Lyme disease for decades even though I remained suspicious that I may have the disease. I simply trusted that my doctor knew better. That was a mistake.
Ultimately, that Rheumatologist diagnoses of fibromyalgia, chronic fatigue syndrome and “unspecified” muscle disease led to my VA disability rating of 70 percent and 100 percent for un-employability. So, I began to receive VA disability benefits at the 100 percent rate and began to receive social security benefits based upon the 100 percent VA rating. According to military disability regulations and federal disability laws I should have received similar disability ratings during my Air Force disability retirement reevaluation; but, we know what happened there. I was literally tried and convicted of being a hypochondriac???
Now I had disability income to survive. However, I continued to suffer even though I had been diagnosed and treated for many different illnesses. The treatments simply did not work. Eventually, I became addicted to opiods and sleep medications (I overcame those addictions cold turkey in 2016 after treatment for Lyme disease). Three decades later I was functionally blind and prepared my family for my death. In fact, I had no will to live as I existed. I had a miserable existence and I prayed God would take me home. My saving grace was my family support. Without that family support I would have committed suicide long ago.
In May 2015, over three decades later unable to drive or expose my eyes to bright light, in a dark room I read an article in a Costco magazine about Lyme disease. This was the first real information I had about Lyme disease. After reading the article, I relived the past three decades of illness in words in the article. Every word in the article fit into my battle with disease. At that time I suspected I really did have Lyme disease; and, I was motivated to learn more about Lyme disease.
So, I began to compare my medical records against Lyme disease medical information on the internet. I reduced my computer screen to minimal light. Then I came across a definitive guide for Lyme disease among other materials. It was like reading my own personal medical journal. My symptoms and progression matched perfectly. At that point, I knew I had Lyme disease. Now I had to obtain a diagnosis and treatment or continue going blind and ultimately face death. For the first time in years I had hope.
Getting diagnosed and treated for Lyme disease was no easy journey. I found rejection everywhere until the VA hired the Lyme disease specialist out of New York I mentioned earlier. That specialist diagnosed my Lyme disease and began treatment. Treatment confirmed I had Lyme disease. I immediately went into the Herxheimer reaction with severe pain reaction to the antibiotics killing the bacteria inside me. Rashes that had occurred and disappeared in 1982 returned. There were pustules covering most of my body where the bacteria broke through my skin like thousands of pimples and lesions all at once. My swollen right leg seemed to be the hub of the disease because it was worst of all and muscles were damaged and remain damaged today. It was horrible.
Nonetheless, for the first time I began to recover from all the pain, suffering, and rashes that had plagued my body for decades. It was miraculous. Even my vision began to recover. I began to drive again. I began to feel human again. I began to want to live again.
However, the strangest thing happened after the Lyme disease specialist returned to New York. Remember, the Lyme disease specialist’s diagnosis disagreed with the letter VA doctors had sent to the President that proclaimed I did not have Lyme disease. So, even though I had documented my recovery in words and photos and shared that with my VA doctors; the VA denied I ever had Lyme disease at all and stopped treatment completely. They even withheld the diagnosis from my medical records. I was back to square one with the VA. Consequently, I relapsed. I wondered whether the VA’s bogus letter to the President denying I had Lyme disease had anything to do with that decision or are they just that ignorant about Lyme disease??? I presume it is both???
Thereafter, in 2016, I abandoned the VA healthcare system and sought the care of Lyme disease and Tick-borne disease specialists. I have been in recovery ever since. Today, I remain under treatment; but, my 3 decades of constant relentless suffering have ended. My vision is nearly completely restored. Every day, my health and quality of life get closer to normal. Whereas, at 30 years old I would say I felt like an 80 year old man. Today, at 66 years old I feel like a man much younger. However, I do not know what it feels like to be 30, 40, or 50; because, I have had undiagnosed and untreated Lyme disease all those years. Today, I no longer feel like I am at death’s door. I no longer pray for death over life.
My biggest problem today is; I must pay for my Lyme disease treatments out of my own pockets; because, like most tick-borne disease specialists my doctor does not take health insurance. Further, the VA will not authorize or pay for me to continue my treatment outside the VA even though I am a 100 percent disabled veteran and they refuse to treat me at the VA.
Unfortunately, this doesn’t just apply to me. It applies to all veterans with chronic Lyme disease and co-infections. The VA cannot or will not adequately treat us; so, we continue to suffer or pay for our own health care. Here is an unedited real life example of a disabled veteran seeking treatment outside the VA healthcare system. This example was taken from a Veteran Lyme disease support website. No names just their story as they wrote it with typing errors and all. This is what we deal with as Veterans with Lyme disease.
My husband has had Lyme for 12 years. He went 3 threes before being diagnosed. It has done so much damage to his body. Last year he had surgery and they gave him IV steroids. He had a horrible lyme flare up as a result. The muscle
pain and fatigue were so bad he couldn't get out if bed. His Lyme doctor has him on antibiotics and supplements that are helping but the cost for her appointments and the supplements is alot. Before he was retired out insurance covered
most of his lyme doctor costs but now that he is retired medically they do not. I wasnt sure if there was anything else we could try to have the costs covered.
There are very good reasons Lyme and tick-borne disease specialists do not accept health insurance. Lyme and tick-borne disease specialists are targeted by health insurance companies trying to destroy their medical practices to avoid paying the cost of treatment for Lyme disease. There is simply too much misinformation, personal financial interests, and conflicts of interests surrounding Lyme disease and co-infections.
Consequently, Congress has established a Tick-Borne Disease Working Group to study and report to Congress about issues surrounding Lyme disease and co-infections. You will find my case on page 8 of the first report to Congress released this December https://www.lymedisease.org/draft-tbdwg-report-congress/. The working group tried to sum up my case in very few words. So, my medical status is very misleading. Truth is, I have never been totally symptom free. In 2017, my first private Lyme doctor thought I had beaten Lyme disease; so did I. I stopped treatment about a month before symptoms returned. I have been in treatment ever since. Lyme disease is a treatable but persistent disease. So, even when we believe we have beaten the disease we are mistaken.
However, until Congress resolves the issues surrounding Tick-borne diseases and doctors who treat these diseases, many doctors will not accept health insurance at risk of attacks by health insurance companies. These doctors want to treat tick-borne disease not fight battles with insurance companies that try to ruin their practices. The only way they can avoid these attacks is to not accept health insurance. That makes diagnosis and treatment costly and nearly impossible for many, especially for disabled veterans who rely on the VA for their healthcare needs. In contrast, it makes insurance companies happy; because, they do not pay the cost of care for Lyme disease. Instead, we pay.
Purpose:
Therefore, I have started this go fund me page to help pay my medical bills and help other veterans with Lyme disease. I am very much aware and sympathetic to the plight of my fellow veterans who continue to go through the same issues I went through for over three decades under the care of both military and VA healthcare systems. Like me they are exposed to psychiatric abuses, unemployment, homelessness, poverty, inability to obtain VA and social security benefits, addiction to prescription medications, and no access to proper diagnosis and treatment for tick-borne diseases. Unfortunately, like me they are caught up in a perpetual loop of misdiagnosis and mistreatment that ultimately lead to endless suffering, blindness, death, and/or suicide.
In 2017, military health officials released a report that concluded Lyme disease as the number one vector borne disease threat to our military. Other research has shows that Lyme disease contributes to the escalating suicide rate. I am a real life example in an article published by USA today. You can read this article https://www.usatoday.com/story/news/nation-now/2017/07/19/how-lyme-disease-might-triggering-hundreds-suicides/493934001/.
I know personally that Lyme disease can lead to suicide; because, I attempted suicide in 1983 just one year after I was infected with Lyme disease as I watched my health and my military career deteriorate into medical and career chaos. You may find the military health report at
https://health.mil/News/Gallery/Infographics/2018/02/14/Surveillance-for-Vector-Borne-Diseases-US-Armed-Forces--2010-to-2016. However, I urge caution; because, the report is based upon flawed CDC surveillance criteria which the CDC admits only captures about 10 percent of Lyme disease cases. Using this flawed method the CDC estimates Lyme disease a rates 10 times higher than their surveillance criteria identifies. Therefore, estimates in the military report should be at least 10 times higher than shown in the report; because, about 90 percent of Lyme disease cases are not identified by CDC surveillance criteria. Further, the numbers in this report highlight the real problem with diagnosis and treatment of Lyme disease within the VA.
However, the CDC flawed surveillance criteria are used by both the military and the VA. Therefore, about 90 percent of military Lyme disease cases are not diagnosed and the cases identified in their report are severely understated. The question remains what happens to the 90 percent of Veteran with Lyme disease that are missed by the military and VA healthcare systems. Clearly, they are among the thousands of unemployed, homeless, dying, and suicidal veterans on the streets today.
Consistent with Lyme disease being the number one vector-borne disease threat to our military; it is also true that suicide is the number one cause of death for our veterans today. On average, 20 veterans a day commit suicide. When you connect the dots, it becomes clear that the military and VA doctors’ inability to diagnose and treat Lyme and other tick-borne diseases clearly contribute to the level of veteran suicides. You can read about veteran suicides in this article https://www.militarytimes.com/news/pentagon-congress/2018/09/26/suicide-rate-spikes-among-younger-veterans/.
Summary:
I am just one example of thousands: Thirty six years ago, I contracted Lyme disease. Over those years the VA could not diagnose or treat my disease. As I was; even today, veterans are caught up in a perpetual loop of misdiagnoses and failed treatments that cause endless suffering and destroy lives and families. As a direct result of this perpetual loop the VA creates veterans homelessness, un-employability, Opiods and other addictions and more.
The VA’s answer to veteran suicides is suicide hotlines that have failed miserably. The veteran suicide rate has only increased. This clearly shows the VA’s focus on suicide hotline is ineffective by itself. Along with suicide hotlines the suicide hotline should be able to refer veterans to Lyme disease specialists. However, the VA does not have Lyme disease specialists??? Therefore, a suicide hotline cannot help veterans with Lyme disease.
More veterans die from suicide than have died in recent wars. The fact is, Veterans with Lyme disease cannot benefit from a suicide hotline; because, it only returns to the perpetual loop that fails them every time through medical ignorance about Lyme disease. Therefore, for some suicide is the only escape from the perpetual loop to madness. I have been there. I have survived the madness. Now it is important that my fellow veterans do the same.
Also, my military records mischaracterize the true nature of my military service. The picture I chose for this campaign truthfully characterizes my military service to this country before Lyme disease. I had an outstanding military record before Lyme disease. Nonetheless, my military record will show a career ending as a hopeless hypochondriac. That is simply not true. That is not the way I want my dedicated military service to be remembered. My military record should be corrected to show I acquired Lyme disease at a time when Lyme disease was not well known.
Even today, many doctors are not trained to diagnose and treat tick-borne diseases. Clearly, the military and VA healthcare systems should provide appropriate diagnosis and treatment for Veterans with Lyme disease. In order to do that doctors must be trained to understand Lyme disease and Tick-borne disease; or they must establish a center or team of Lyme disease and tick-borne disease specialists; or they must authorize and pay for veterans to seek diagnosis and treatment from Lyme disease and tick-borne disease specialists outside their healthcare systems. Instead, they have chosen to let us live in poverty or die on their doorsteps.
How can you help?
I am using this go fund me page in hope that you will help me and other veterans with Lyme disease and other tick-borne diseases. Today, I spend nearly $1,000.00 a month for doctor visits, labs, travel, medications, and supplements to treat my Lyme disease and co-infections. I drive five to six hours in heavy traffic to and from my doctor visits. I am currently running up my credit card debt to pay these medical expenses. Even though treatments a working and I am regaining my health and quality of life; it is just a matter of time before the costs catch up with me and I will either go bankrupt again and/or drop out of treatment. Heaven forbid, Lyme disease may take its devastating hold on me again. Other veterans with Lyme disease are doing the same.
The idea of returning to the perpetual loop of suffering within the VA simply does not appeal to me. I would certainly like to pay off my credit card debt and pay for future medical care without running up my credit cards again.
Also, advocacy for Veterans with Lyme disease is very important to me because of my first hand experience with Lyme disease. Therefore, I would like to advocate for Veterans with Lyme disease whenever and wherever possible. I have a 1971 Volkswagon Camper van. Sometimes they are referred to as bugs or beetles. I would like to refer to my van as the “Tick Mobile” that delivers information about Lyme disease across the country. Therefore, I would like to convert my Volkswagon Camper van into a Veterans with Lyme disease advocacy media van. The classic van will immediately capture the attention of many.
However, that may be an expensive undertaking unless I find sponsors to help. I will use this van to travel to and attend activities to advocate for Veterans with Lyme disease. My goal will be to increase awareness issues Veterans with Lyme disease face with the military and VA healthcare systems and emphasize the link between Lyme disease and veterans homelessness, unemployment, suicides and more.
Also, I will advocate and promote change within the military and VA to either train or hire tick-borne disease specialists or make referrals and pay for diagnosis and treatment by tick-borne disease specialist. Only then will they see a meaningful decline in veterans’ homelessness, addictions, unemployment, deaths, and suicides.
Further, I would like to establish a fund to help pay the medical expenses of veterans with Lyme disease that cannot find diagnosis and treatment within VA healthcare systems. This is disparately needed to help veterans with financial hardships.
Further, I would like to establish a legal fund to help veterans like me correct our military records when and where needed. We need attorneys that will fight for veterans. That will not happen unless we can pay them.
The military services are supposed to follow the VA disability rating system to determine military retirement benefits. Therefore, my military disability rating should be the same as my VA disability rating; and, I should have all the benefits of a military retirement; but, I do not. In my case, the military disregarding my medical disabilities and prosecuted me instead. That should not stand for me or any veteran that is similarly situated.
So, if you are interest in helping veterans with Lyme disease and other veteran issues, you will also be helping to prevent veteran suicides, veteran homeless, Opiods addiction, unemployed veterans and more. All these conditions are inevitably linked to some degree because if you have undiagnosed and untreated Lyme disease and co-infections you are likely to be among all these groups as I was.
If there is serious interest in my proposals, I commit to establishing a nonprofit organization that will do the things I propose. Also, I am open to suggestions from the general public, especially veterans similarly situated. As an analyst for the military I excelled; therefore, I have no doubt that I can meet these commitments now that my brain is functioning well again.
I pray you will help. Please donate to this go fund me initiative.
Thank You
In 1982, I contracted Lyme disease, Babasiosis, Bartonella, and other pathogens after tick bites in the very same year the pathogen that causes Lyme disease was discovered. The devastation began. Lyme disease research was in its infancy. There were no defined symptoms, disease patterns and progressions, or diagnostic tests or diagnostic and treatment guidelines and very limited medical knowledge about locations and prominence of the diseases.
In other words, I got Lyme disease when only a few doctors in the world even knew it existed. This may seem ridiculous because the prehistoric man found in Italy (Otzi) had Lyme disease over five thousand years ago (https://www.livescience.com/18704-oldest-case-lyme-disease-spotted-iceman-mummy.html). Lyme disease has clearly existed since pre-historic times.
However, Lyme disease was only discovered in the United States in the late 20th Century and science still does not have a full understanding of Lyme disease. Consequently, there is literally a Lyme Disease War as doctors and scientists try to benefit from copyrights, patents, products, procedures, and controls that allow them to profit from a disease that has become a pandemic, (over 400,000 cases each year based on CDC estimates).
Veterans are among the casualties of the Lyme Disease War; because, Veterans typically rely on military and VA healthcare systems that are always the last to update medical care for veterans. For example, most veterans died before the VA recognized diseases related Agent Orange exposure in Vietnam. Similarly, most veterans will die before the VA understands how to fully diagnose and treat Lyme disease. Likewise, the VA did not recognize Lyme disease until 1996, 14 years after I contracted the disease. Even today veterans with Lyme disease are literally rejected by VA healthcare guidelines.
From my experience, VA doctors are not trained to diagnose and treat Lyme disease. Over several years, every doctor I asked about Lyme disease would reply they know nothing about Lyme disease or they go online and try to learn about Lyme disease during my short medical visit. Many doctors are intimidated and become defensive if you ask about Lyme disease. One doctor dropped me as her patient after I suggested I had Lyme disease.
For example, in 2015, I asked the President to intervene in my Lyme disease diagnosis and treatment. He did. In response, I was scheduled an appointment to respond to the President’s Inquiry. My first question to the doctor was; “Do you understand Lyme disease?” He arrogantly replied; “No, I do not know any doctor in this hospital that understands Lyme disease; so, I am the best you got.” Then, I asked; will the VA allow me to see a Lyme disease specialist outside the VA? He replied; “No, we don’t do that.” My life was clearly in competent hands???
So, here I was prepared with all my medical records dated back to 1982 and medical literature that clearly suggested I had Lyme disease. The doctor went online and tried to learn about Lyme disease as he allowed me to explain why I thought I had Lyme disease. Clearly I had his undivided attention??? Ultimately, the doctor used established, well defined Lyme disease symptoms to deny I had Lyme disease. He replied to the President that I did not have Lyme disease. He was wrong.
However, a few months later the same VA hospital temporarily hired a Lyme disease specialist from New York to evaluate several suspected Lyme disease cases. That specialist diagnosed my Lyme disease and began treatment. I suppose the VA expected the specialist to confirm their diagnosis that I did not have Lyme disease: but, that did not happen. Now there was a dispute between VA doctors with no Lyme disease training and the Lyme disease specialist that was trained; and, diagnosed and treated Lyme disease routinely in a Lyme endemic area. Unbelievably, I was caught right in the middle of a Lyme disease War (the Twilight Zone).
Clearly, the VA’s reputation was harmed by the Lyme disease specialist. They had written a letter to the President proclaiming I did not have Lyme disease; now, a private Lyme disease specialist contradicted that letter. Clearly, this suggests that they lied to the President and the VA’s best option was incompetent to diagnose and treat Lyme disease. Clearly, my life was in the wrong hands???
Looking back, as a member of the military, I had a disease that essentially no one knew about or understood. That left me vulnerable to every speculation, ridicule, punishment, criticism, a military man/woman can imagine. With tick bites, I went from an outstanding career Senior Non-Commission Officer; well educated and established expert in my field; outstanding martial arts instructor, long distance runner, and A/B racquetball player; and, a well liked and respected person to a total malingering failure. The transition was dramatic destruction both physically and mentally. I was trapped in the twilight zone now known as tick-borne disease (Lyme disease and co-infections).
So, at 14 years and 14 days my military career ended in disgrace. After two years of suffering through misdiagnosis and mismanagement of my disease I was diagnosed as a hopeless hypochondriac with a psychogenic pain disorder. Needless to say, there is no treatment for that. The only treatments I was offered was military punishment including courts martial and permanent commitment to a psychiatric ward. Due to my military reputation the Base Commander refused to honor the Squadron Commander’s courts martial request. However, it took a Congressional Inquiry to prevent the military from permanently committing to the psychiatric ward at Eglin AFB, Florida.
Thereafter, I was placed on 18 months temporary disability retirement; and, I was discharged from the United States Air Force with several tick-borne diseases without diagnosis or treatment. I was sick and unable to work. What was I supposed to do? Obviously the discharge forced me into homelessness. So, I was sick, unemployable, and homeless like many veterans today. How was I supposed to get back on my feet and start over again? I applied for social security; but, I was denied; because, you do not get social security for being a hypochondriac. I applied to work at the Post Office. Even though I aced the test I was told I could not do the job because of my illness. Clearly, they did not hire hypochondriacs at the post office.
However, the Post Office was right. I knew I could not do the job; but, it had nothing to do with being a hypochondriac. I was physically unable to work. I was riddled with muscular and nerve pain and muscle spasms from head to toe. I was a medical wreck. I could not sit or stand very long. I could not sleep well and was extremely fatigued. I was cold intolerant and experienced frequent episodes of shortness of breath, and heart and chest pain. But, I had to find a way to survive. However, I had no answers. I had to get a proper diagnosis and treatment or I was doomed forever. I had 18 months to do it or I would lose my temporary disability retirement benefits too.
After leaving the Air Force, the Veterans Administration was supposed to provide my medical care and disability benefits. But, this was a major disappointment too. My hypochondrias diagnosis was rated at zero percent disability. So, there were no VA benefits for me unless I obtained a proper diagnosis.
Therefore, I continued to seek diagnosis and treatment through military hospitals and retirement health insurance benefits at major medical universities in Southern California. This resulted in several significant diagnoses. At military hospital I was diagnosed with polymyalgia rheumatica (fibromyositis); multiple civilian doctors diagnosed fibromyalgia/fibrositis and chronic fatigue syndrome; another civilian doctor diagnosed Radiculitis; and another civilian doctor diagnosed peripheral neuropathy. Also, a muscle biopsy concluded that I had a nonspecific muscle disease, and a skin biopsy concluded that I had chronic dermatitis. Ironically, today all these early diagnoses combined together are different components of Tick-borne disease (Lyme disease and co-infections).
Ironically, not a single doctor even considered Lyme disease as a differential diagnosis. Lyme disease did not exist in their diagnostic schemes. Further, not a single doctor concluded I was a hypochondriac. However, that was my label and that was the diagnosis I had to overcome to keep my disability retirement and obtain VA benefits. That was not easy.
After 18 months my temporary retirement came up for reevaluation. I had all my medical records including supporting letters from several doctors. I was prepared to correct my military records once and for all. Initially, I was sent to the March AFB military hospital psychiatric department for reevaluation in Moreno Valley, California. The doctor reviewed my records but admitted he did not have knowledge of the diagnoses in my records and referred my records back to the review authority in Texas. He denied that anyone at March AFB was capable to diagnose the disorders. Rejection 1???
The second reevaluation was at Balboa Navy Hospital in San Diego, California. The doctor reviewed my medical records then commented, “This looks like Lyme disease.” Then he asked if I had lived in the northeastern United States. I replied, “No.” Then he said, I could not have Lyme disease because it does not exist in California. He was wrong. This was 1986 and according to the California Department of Public Health the first case of Lyme disease in California was documented in 1979.
However, Lyme disease had first been discovered in the United States in Lyme Connecticut and doctors that discovered the disease made the overbroad assumption that it did not exist anywhere but the Northeastern United States. So, in 1986, my true diagnosis was denied through misinformation from doctors who discovered Lyme disease. Again, the Navy doctor declined to reevaluate my disability and referred me back to the review authority in Texas. Rejection 2???
So, here I was each doctor declined to reevaluate my disability and passed the buck to someone else. This was the twilight zone of Lyme disease and I was deeply within its grasp.
Thereafter, I was ordered to travel to Lackland AFB, Texas to Wilford Hall Medical Center for reevaluation (premier military medical center???). That was the climax of my reevaluation nightmare. When I arrived at Wilford Hall, I was immediately locked up on a secure psychiatric ward. I was told I would be there for days until I complete the full reevaluation. However, this was an outright abuse of power. My freedom was taken away from me; and I was essentially kidnapped and imprisoned for what should have been an outpatient reevaluation. Obviously, someone had decided to punish me on my third reevaluation attempt. Someone had decided to make this reevaluation as demeaning as possible.
However, I was no longer active duty. I knew they had no authority to lock me up on a psychiatric ward. So, I made it clear that I would not stay there. I demanded that they release me; but, they would not. They said, only the Hospital Commander could release me. I told them that I would wait until the end of the workday for the Commander’s decision to release me; but, I would not spend the night on a secured psychiatric ward with disturbed people wondering in and out of my room in all stages of psychiatric distress. I vowed that I would walkout if the Commander did not release me.
By the end of the day they had not voluntarily released me; so, I walked to the security doors with my bags in hand and demanded that they open the doors and allow me to leave. They refused. However, as I walk toward the counter a clerk walking towards me told them the Commander had released me to an unsecure ward. So, I was taken to what was supposed to be an unsecure ward; but, I learned that I was still locked up at night. One night I attempted to take a walk because I could not sleep and the doors were locked with no one there to open them. I was still a prisoner. I was still kidnapped. Now, I was angry. They had lied to me and taken my freedom again.
The next day, I told the attendant that I was supposed to be on an unsecure ward, not locked up at night. That did not go over well. Now everyone was angry at me because I refused to be locked up. The same day the doctor came to reevaluate my temporary disability. The doctor had reviewed some of my medical records and said I had a good case for fibromyalgia and chronic fatigue syndrome but no one at that hospital was willing to help me. He said; instead, they would convene a military hearing to decide my future. He comment; “you should have left well enough alone.” Then, he walked away. In a matter of minutes my reevaluation ended and my destiny was sealed with total disregard to my medical diagnoses, military regulations, and applicable military and federal disability laws. Instead, I was railroaded by angry medical doctors who sought to punish and imprison me rather than diagnose and treat me. Rejection 3???
Thereafter, they provided me a military attorney and proceeded with the hearing. During the hearing the attorneys and the judge laughed and joked like drinking buddies at a local bar as they took away my disability retirement. The procedure was a clear mockery of justice clearly intended to give the illusion of a fair hearing. It was a joke but I wasn’t the one laughing, everyone else laughed.
So, instead of a disability reevaluation, I was put on trial and convicted of being a hopeless hypochondriac and unfit for military duty and disability retirement after an otherwise over 14-years of stellar service to my country. Rejection 4???
Needless to say, they had already decided to take away my temporary disability benefits no matter how sick I was in total disregard to diagnoses from prominent medical Professors/doctors at several well known major medical universities in California. This was a violation of military disability regulations and federal disability laws; but, there was nothing I could do about it. I was not willing to sacrifice my freedom, dignity, and pride to satisfy some arrogant commander who wanted to make me suffer more than I already had. As a result, I lost my disability retirement completely. However, my dignity and pride remained intact. Now, that was all I had.
Nonetheless, I had been diagnosed and treated by the Chief Rheumatologist at a University Medical Center intentionally; because, I knew he was the Chief Rheumatologist at the VA too. So, I suspected he was my best choice to obtain my VA benefits; because, of his influence at the VA. Also, it was a risk. Because, if he had decided I was a hypochondriac, I was doomed. However, it was a risk I had to take.
After, I returned from my disability reevaluation, I asked the Rheumatologist to evaluate me for Lyme disease based upon the comment the doctor made at Balboa Navy Hospital in San Diego. He replied; “I do not know how to evaluate you for Lyme disease; and, I do not know where to send you to be evaluated for Lyme disease.” So, in 1986, the Chief Rheumatologist at a world renowned medical university hospital and medical center did not know anything about Lyme disease. Therefore, I was never evaluated for Lyme disease and I never asked about Lyme disease for decades even though I remained suspicious that I may have the disease. I simply trusted that my doctor knew better. That was a mistake.
Ultimately, that Rheumatologist diagnoses of fibromyalgia, chronic fatigue syndrome and “unspecified” muscle disease led to my VA disability rating of 70 percent and 100 percent for un-employability. So, I began to receive VA disability benefits at the 100 percent rate and began to receive social security benefits based upon the 100 percent VA rating. According to military disability regulations and federal disability laws I should have received similar disability ratings during my Air Force disability retirement reevaluation; but, we know what happened there. I was literally tried and convicted of being a hypochondriac???
Now I had disability income to survive. However, I continued to suffer even though I had been diagnosed and treated for many different illnesses. The treatments simply did not work. Eventually, I became addicted to opiods and sleep medications (I overcame those addictions cold turkey in 2016 after treatment for Lyme disease). Three decades later I was functionally blind and prepared my family for my death. In fact, I had no will to live as I existed. I had a miserable existence and I prayed God would take me home. My saving grace was my family support. Without that family support I would have committed suicide long ago.
In May 2015, over three decades later unable to drive or expose my eyes to bright light, in a dark room I read an article in a Costco magazine about Lyme disease. This was the first real information I had about Lyme disease. After reading the article, I relived the past three decades of illness in words in the article. Every word in the article fit into my battle with disease. At that time I suspected I really did have Lyme disease; and, I was motivated to learn more about Lyme disease.
So, I began to compare my medical records against Lyme disease medical information on the internet. I reduced my computer screen to minimal light. Then I came across a definitive guide for Lyme disease among other materials. It was like reading my own personal medical journal. My symptoms and progression matched perfectly. At that point, I knew I had Lyme disease. Now I had to obtain a diagnosis and treatment or continue going blind and ultimately face death. For the first time in years I had hope.
Getting diagnosed and treated for Lyme disease was no easy journey. I found rejection everywhere until the VA hired the Lyme disease specialist out of New York I mentioned earlier. That specialist diagnosed my Lyme disease and began treatment. Treatment confirmed I had Lyme disease. I immediately went into the Herxheimer reaction with severe pain reaction to the antibiotics killing the bacteria inside me. Rashes that had occurred and disappeared in 1982 returned. There were pustules covering most of my body where the bacteria broke through my skin like thousands of pimples and lesions all at once. My swollen right leg seemed to be the hub of the disease because it was worst of all and muscles were damaged and remain damaged today. It was horrible.
Nonetheless, for the first time I began to recover from all the pain, suffering, and rashes that had plagued my body for decades. It was miraculous. Even my vision began to recover. I began to drive again. I began to feel human again. I began to want to live again.
However, the strangest thing happened after the Lyme disease specialist returned to New York. Remember, the Lyme disease specialist’s diagnosis disagreed with the letter VA doctors had sent to the President that proclaimed I did not have Lyme disease. So, even though I had documented my recovery in words and photos and shared that with my VA doctors; the VA denied I ever had Lyme disease at all and stopped treatment completely. They even withheld the diagnosis from my medical records. I was back to square one with the VA. Consequently, I relapsed. I wondered whether the VA’s bogus letter to the President denying I had Lyme disease had anything to do with that decision or are they just that ignorant about Lyme disease??? I presume it is both???
Thereafter, in 2016, I abandoned the VA healthcare system and sought the care of Lyme disease and Tick-borne disease specialists. I have been in recovery ever since. Today, I remain under treatment; but, my 3 decades of constant relentless suffering have ended. My vision is nearly completely restored. Every day, my health and quality of life get closer to normal. Whereas, at 30 years old I would say I felt like an 80 year old man. Today, at 66 years old I feel like a man much younger. However, I do not know what it feels like to be 30, 40, or 50; because, I have had undiagnosed and untreated Lyme disease all those years. Today, I no longer feel like I am at death’s door. I no longer pray for death over life.
My biggest problem today is; I must pay for my Lyme disease treatments out of my own pockets; because, like most tick-borne disease specialists my doctor does not take health insurance. Further, the VA will not authorize or pay for me to continue my treatment outside the VA even though I am a 100 percent disabled veteran and they refuse to treat me at the VA.
Unfortunately, this doesn’t just apply to me. It applies to all veterans with chronic Lyme disease and co-infections. The VA cannot or will not adequately treat us; so, we continue to suffer or pay for our own health care. Here is an unedited real life example of a disabled veteran seeking treatment outside the VA healthcare system. This example was taken from a Veteran Lyme disease support website. No names just their story as they wrote it with typing errors and all. This is what we deal with as Veterans with Lyme disease.
My husband has had Lyme for 12 years. He went 3 threes before being diagnosed. It has done so much damage to his body. Last year he had surgery and they gave him IV steroids. He had a horrible lyme flare up as a result. The muscle
pain and fatigue were so bad he couldn't get out if bed. His Lyme doctor has him on antibiotics and supplements that are helping but the cost for her appointments and the supplements is alot. Before he was retired out insurance covered
most of his lyme doctor costs but now that he is retired medically they do not. I wasnt sure if there was anything else we could try to have the costs covered.
There are very good reasons Lyme and tick-borne disease specialists do not accept health insurance. Lyme and tick-borne disease specialists are targeted by health insurance companies trying to destroy their medical practices to avoid paying the cost of treatment for Lyme disease. There is simply too much misinformation, personal financial interests, and conflicts of interests surrounding Lyme disease and co-infections.
Consequently, Congress has established a Tick-Borne Disease Working Group to study and report to Congress about issues surrounding Lyme disease and co-infections. You will find my case on page 8 of the first report to Congress released this December https://www.lymedisease.org/draft-tbdwg-report-congress/. The working group tried to sum up my case in very few words. So, my medical status is very misleading. Truth is, I have never been totally symptom free. In 2017, my first private Lyme doctor thought I had beaten Lyme disease; so did I. I stopped treatment about a month before symptoms returned. I have been in treatment ever since. Lyme disease is a treatable but persistent disease. So, even when we believe we have beaten the disease we are mistaken.
However, until Congress resolves the issues surrounding Tick-borne diseases and doctors who treat these diseases, many doctors will not accept health insurance at risk of attacks by health insurance companies. These doctors want to treat tick-borne disease not fight battles with insurance companies that try to ruin their practices. The only way they can avoid these attacks is to not accept health insurance. That makes diagnosis and treatment costly and nearly impossible for many, especially for disabled veterans who rely on the VA for their healthcare needs. In contrast, it makes insurance companies happy; because, they do not pay the cost of care for Lyme disease. Instead, we pay.
Purpose:
Therefore, I have started this go fund me page to help pay my medical bills and help other veterans with Lyme disease. I am very much aware and sympathetic to the plight of my fellow veterans who continue to go through the same issues I went through for over three decades under the care of both military and VA healthcare systems. Like me they are exposed to psychiatric abuses, unemployment, homelessness, poverty, inability to obtain VA and social security benefits, addiction to prescription medications, and no access to proper diagnosis and treatment for tick-borne diseases. Unfortunately, like me they are caught up in a perpetual loop of misdiagnosis and mistreatment that ultimately lead to endless suffering, blindness, death, and/or suicide.
In 2017, military health officials released a report that concluded Lyme disease as the number one vector borne disease threat to our military. Other research has shows that Lyme disease contributes to the escalating suicide rate. I am a real life example in an article published by USA today. You can read this article https://www.usatoday.com/story/news/nation-now/2017/07/19/how-lyme-disease-might-triggering-hundreds-suicides/493934001/.
I know personally that Lyme disease can lead to suicide; because, I attempted suicide in 1983 just one year after I was infected with Lyme disease as I watched my health and my military career deteriorate into medical and career chaos. You may find the military health report at
https://health.mil/News/Gallery/Infographics/2018/02/14/Surveillance-for-Vector-Borne-Diseases-US-Armed-Forces--2010-to-2016. However, I urge caution; because, the report is based upon flawed CDC surveillance criteria which the CDC admits only captures about 10 percent of Lyme disease cases. Using this flawed method the CDC estimates Lyme disease a rates 10 times higher than their surveillance criteria identifies. Therefore, estimates in the military report should be at least 10 times higher than shown in the report; because, about 90 percent of Lyme disease cases are not identified by CDC surveillance criteria. Further, the numbers in this report highlight the real problem with diagnosis and treatment of Lyme disease within the VA.
However, the CDC flawed surveillance criteria are used by both the military and the VA. Therefore, about 90 percent of military Lyme disease cases are not diagnosed and the cases identified in their report are severely understated. The question remains what happens to the 90 percent of Veteran with Lyme disease that are missed by the military and VA healthcare systems. Clearly, they are among the thousands of unemployed, homeless, dying, and suicidal veterans on the streets today.
Consistent with Lyme disease being the number one vector-borne disease threat to our military; it is also true that suicide is the number one cause of death for our veterans today. On average, 20 veterans a day commit suicide. When you connect the dots, it becomes clear that the military and VA doctors’ inability to diagnose and treat Lyme and other tick-borne diseases clearly contribute to the level of veteran suicides. You can read about veteran suicides in this article https://www.militarytimes.com/news/pentagon-congress/2018/09/26/suicide-rate-spikes-among-younger-veterans/.
Summary:
I am just one example of thousands: Thirty six years ago, I contracted Lyme disease. Over those years the VA could not diagnose or treat my disease. As I was; even today, veterans are caught up in a perpetual loop of misdiagnoses and failed treatments that cause endless suffering and destroy lives and families. As a direct result of this perpetual loop the VA creates veterans homelessness, un-employability, Opiods and other addictions and more.
The VA’s answer to veteran suicides is suicide hotlines that have failed miserably. The veteran suicide rate has only increased. This clearly shows the VA’s focus on suicide hotline is ineffective by itself. Along with suicide hotlines the suicide hotline should be able to refer veterans to Lyme disease specialists. However, the VA does not have Lyme disease specialists??? Therefore, a suicide hotline cannot help veterans with Lyme disease.
More veterans die from suicide than have died in recent wars. The fact is, Veterans with Lyme disease cannot benefit from a suicide hotline; because, it only returns to the perpetual loop that fails them every time through medical ignorance about Lyme disease. Therefore, for some suicide is the only escape from the perpetual loop to madness. I have been there. I have survived the madness. Now it is important that my fellow veterans do the same.
Also, my military records mischaracterize the true nature of my military service. The picture I chose for this campaign truthfully characterizes my military service to this country before Lyme disease. I had an outstanding military record before Lyme disease. Nonetheless, my military record will show a career ending as a hopeless hypochondriac. That is simply not true. That is not the way I want my dedicated military service to be remembered. My military record should be corrected to show I acquired Lyme disease at a time when Lyme disease was not well known.
Even today, many doctors are not trained to diagnose and treat tick-borne diseases. Clearly, the military and VA healthcare systems should provide appropriate diagnosis and treatment for Veterans with Lyme disease. In order to do that doctors must be trained to understand Lyme disease and Tick-borne disease; or they must establish a center or team of Lyme disease and tick-borne disease specialists; or they must authorize and pay for veterans to seek diagnosis and treatment from Lyme disease and tick-borne disease specialists outside their healthcare systems. Instead, they have chosen to let us live in poverty or die on their doorsteps.
How can you help?
I am using this go fund me page in hope that you will help me and other veterans with Lyme disease and other tick-borne diseases. Today, I spend nearly $1,000.00 a month for doctor visits, labs, travel, medications, and supplements to treat my Lyme disease and co-infections. I drive five to six hours in heavy traffic to and from my doctor visits. I am currently running up my credit card debt to pay these medical expenses. Even though treatments a working and I am regaining my health and quality of life; it is just a matter of time before the costs catch up with me and I will either go bankrupt again and/or drop out of treatment. Heaven forbid, Lyme disease may take its devastating hold on me again. Other veterans with Lyme disease are doing the same.
The idea of returning to the perpetual loop of suffering within the VA simply does not appeal to me. I would certainly like to pay off my credit card debt and pay for future medical care without running up my credit cards again.
Also, advocacy for Veterans with Lyme disease is very important to me because of my first hand experience with Lyme disease. Therefore, I would like to advocate for Veterans with Lyme disease whenever and wherever possible. I have a 1971 Volkswagon Camper van. Sometimes they are referred to as bugs or beetles. I would like to refer to my van as the “Tick Mobile” that delivers information about Lyme disease across the country. Therefore, I would like to convert my Volkswagon Camper van into a Veterans with Lyme disease advocacy media van. The classic van will immediately capture the attention of many.
However, that may be an expensive undertaking unless I find sponsors to help. I will use this van to travel to and attend activities to advocate for Veterans with Lyme disease. My goal will be to increase awareness issues Veterans with Lyme disease face with the military and VA healthcare systems and emphasize the link between Lyme disease and veterans homelessness, unemployment, suicides and more.
Also, I will advocate and promote change within the military and VA to either train or hire tick-borne disease specialists or make referrals and pay for diagnosis and treatment by tick-borne disease specialist. Only then will they see a meaningful decline in veterans’ homelessness, addictions, unemployment, deaths, and suicides.
Further, I would like to establish a fund to help pay the medical expenses of veterans with Lyme disease that cannot find diagnosis and treatment within VA healthcare systems. This is disparately needed to help veterans with financial hardships.
Further, I would like to establish a legal fund to help veterans like me correct our military records when and where needed. We need attorneys that will fight for veterans. That will not happen unless we can pay them.
The military services are supposed to follow the VA disability rating system to determine military retirement benefits. Therefore, my military disability rating should be the same as my VA disability rating; and, I should have all the benefits of a military retirement; but, I do not. In my case, the military disregarding my medical disabilities and prosecuted me instead. That should not stand for me or any veteran that is similarly situated.
So, if you are interest in helping veterans with Lyme disease and other veteran issues, you will also be helping to prevent veteran suicides, veteran homeless, Opiods addiction, unemployed veterans and more. All these conditions are inevitably linked to some degree because if you have undiagnosed and untreated Lyme disease and co-infections you are likely to be among all these groups as I was.
If there is serious interest in my proposals, I commit to establishing a nonprofit organization that will do the things I propose. Also, I am open to suggestions from the general public, especially veterans similarly situated. As an analyst for the military I excelled; therefore, I have no doubt that I can meet these commitments now that my brain is functioning well again.
I pray you will help. Please donate to this go fund me initiative.
Thank You