LYME STORIES: Dwight Harris

Testimony of Dwight Harris to the Senate Committee on Health, Education, Labor, and Pensions on August 30, 2012

Thank you for permitting me to testify to you today about my experiences from infection with Lyme Disease and other associated tick infections.

I would like you know my medical history as it relates to this terribly debilitating disease as it is a story that is similar to so many victims I know. I was infected in 1994 and had the typical “Bulls Eye” associated with Lyme infection. I did not see a doctor while the “Bulls Eye” was visible, but when my health started to deteriorate soon thereafter I sought medical advice. I reported the visual telltale signs of infection to my M.D. He ordered a blood test for Lyme and reported to me that the result was negative. My health continued to deteriorate for the next ten years at which time I was so physically incapacitated I was hospitalized with suspected heart impairment. At that time I had little muscle coordination, slurred speech, and cognitive difficulties. These symptoms would continue for long periods of time or be episodic, lasting for an hour at a time, but always persistent. I spent one week in the hospital at a cost exceeding $70, 000. I finally left against medical advice when I was told that my heart was erratic and I needed a pace maker, but the remaining symptoms must be of a Psychiatric nature because one week of tests with many specialists could not identify a physiological basis for my condition. It was recommended that I be moved to the psychiatric ward for two to three weeks and be drugged to see if the symptoms disappeared while at the same time addressing my heart arrhythmia with a pace maker. During my entire stay I persisted on my assertion that my condition must be connected to Lyme Disease. I was told that an additional blood test performed during my stay there was again negative. I left the hospital against medical advice with the complete support of my wife and family. I went back to visit the heart specialist that diagnosed my heart condition and asked him if he was aware of the impact of Lyme Disease on a human heart. He said he was ignorant about Lyme. It was at that point I was convinced I had made the right decision not to have a pace maker installed, which as I understand it, is for life. It was now April of 2004 and I continued to physically and mentally deteriorate. Every time I would see a doctor they wanted to rush me to the hospital for fear of a heart attack or stroke. I declined their invitation for the hospital visit every time. The remaining Lyme symptoms, other than chest pains and an irregular heartbeat, were always assumed to be emotional after looking at previous batteries of tests and completions of new tests. My work was almost impossible to perform. Besides having difficulty in work, I had very little quality of life. My family was very supportive of me, but I was almost becoming a vegetable in constant pain and suffering which greatly affected my life and the lives of the loved ones around me. I have seven children and I could barely mange the physical and mental strength to support them at graduations, wedding and other important functions, let alone serve the regular needs that children have for a father. Only a wife as strong, loving, and empathetic as mine could care for someone in my place. I have to say that my condition deteriorated to the point that I did not want to live. If I chose not to live in my condition the doctors would have appeared to have been correct in their original diagnosis when in fact, their incorrect diagnosis could have resulted in a tragedy. For the next four years I gave up searching for a Lyme literate doctor and succumbed to existing in life just for the sake of my family. Fortunately, I could work limited hours because I was self employed. If I had to rely on outside employment I would be relegated to unemployment disability. My attorneys tried to convince me many times to go on welfare. My ability to reason and my business intellect was greatly impaired. I felt that if I accepted welfare and stopped striving to be productive at any level, I would continue a downward spiral to an existence that would be tantamount to purgatory.

In 2008 I made a friend who had been battling Chronic Lyme and she referred me to an excellent doctor that was extremely Lyme literate. My friend had not worked for two years, was almost bed ridden every day, but now was slowly becoming a productive individual again. Thanks to her referral to this doctor I was able to start combating my disease. Thanks to Senator Blumenthal’s work in Connecticut while he was Attorney General, this doctor was more comfortable treating Lyme with long term antibiotics. He immediately diagnosed Lyme Disease and informed me that the laboratory tests for Lyme Disease were not very often accurate. I asked him to have my blood tested anyway as he informed me that there were preferential tests and laboratories that might increase the level of reporting accuracy. My test came back positive, however, the level of infection was not high enough to be required to be reported to the Center for Disease Control even though I could hardly walk, speak, or reason ,and was in incredible pain. This told me that whatever figures are reported for Lyme infection are grossly under reported due to inaccurate testing or misdiagnosis. After two and a half years of treatment by this doctor I had some improvement, but still was very much incapacitated. During that time period I heard of other alternative treatments and inquired to him his thoughts on some of these treatments. He said he was not against alternative treatments, but he was familiar many of them and that he did not see much success, however, one he identified as observing a high degree of success. I asked him if he could prescribe it for me. He could not do this as it was not FDA approved. I asked him why this was the case and it was, in his opinion, because it did not involve drugs and therefore pharmaceutical companies had no incentive to invest time and money for research and FDA approval. One and a half years ago I was fortunate to find someone to help me with this treatment and I am now getting my life and my family’s life back again. I am becoming productive, happy, and healthy. I am not on disability, I earn money, and I enjoy my children and grandchildren, and am very involved in charity and community work. In fact I am on the Board and or Chairperson to foundations that oversee assets in excess of 25 million dollars. This past year I was awarded the “Citizen of the Year” award in my community. All this after I was perceived as physically and mentally challenged with little hope of recovery. Now, not only have I been able to recapture my life, but I am proud to say I have significantly contributed positively to the lives of others. This has been made possible because I was fortunate to meet a Lyme victim, meet an M.D. who was not afraid to accept and treat Lyme patients, and an anonymous person who is willing to help Lyme victims with alternative medicine not accepted by most of the medical profession or the FDA. I am sure you know that much of the medical profession still does not believe in Chronic Lyme. It is because of this that insurance companies can decline benefits for most Lyme treatment except for early stages which requires two weeks of inexpensive antibiotics.

Now that I have been fortunate to receive successful treatment my heart goes out to all those victims that cannot afford to pay out of pocket when insurance companies decline coverage, who do not know where to find a Lyme literate doctor who can treat patients without of fear of prosecution from states and medical boards, or who can find help with remedies outside FDA approval. The worse experience I had was not being able to have confirmation of my illness for so long. You cannot meet a challenge if you cannot identify it. Let’s please learn how we can affectively identify this horrible disease, and then how can treat it. We then must educate the medical profession, the public, and insurance companies, to give Lyme victims a chance for life. Living with untreated Chronic Lyme is not life to live. Aside from the personal pain and suffering, there is a tremendous cost associates with this disease. I know of many people that are totally disabled from this disease and society is picking up the check. Research with national attention and money will make lives and families whole again and will pay social and financial dividends way beyond your imagination. I have seven children across the country. Lyme is very prevalent in the Northeast, but there are many cases being reported West from here. Either the disease is spreading, or its awareness is increasing. Most doctors in other parts of this country are twenty years behind Lyme literacy here in the East. If Lyme in its early stages is identified, it can easily be treated with great success. The only reason I knew I was infected with Lyme was because my co-worker was infected with an identical “Bulls Eye” as mine at the same time. He was a veteran and was having a routine exam when the VA indentified his Lyme infection. They prescribed two weeks of antibiotic treatment and to this day he has not had any Lyme symptoms. I figured that if I got sick I could go to a doctor and receive the same antibiotic treatment and be fine. The longer you wait, the harder it is to eradicate, and this is only if you have a Lyme literate medical profession with accurate testing. Look, my doctor said my test was negative, which was correct, but the test was wrong!

At this point in time, I am well and productive much of each week and I savor at the relief I have and the productive life I am leading compared to ten years of almost complete incapacity to perform everyday tasks. A little help can go a long way. That is all we Lyme victims are looking for, a little help. I applaud Senator Blumenthal for all he has done in the past and his continuing effort. Please help him and all Lyme victims. By the way, my heart is medically sound without any pace maker, and now my heart goes out to all Lyme victims who have not been as fortunate as me.

Thank for your time and attention to this matter.

Respectfully submitted:

Dwight Harris

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