My story starts in 1998, although my
family history goes back even
farther. In 1998 I was a promising
pre-med student with a 4.0 GPA. I
was excited about moving into a new
career as a physician. However,
that year I began feeling more and
more fatigued, although I had no
idea why. I eventually became too
fatigued to continue with college or
work. I was diagnosed with
Fibromyalgia by the family doctor I
worked for and by a rheumatologist,
and with Chronic Fatigue Immune
Dysfunction Syndrome by a
neurologist. I was one of the lucky
few who was able to get on Social
Security Disability on my first try
and without a lawyer. However,
since I was a full-time student at
the time and only worked part time,
my disability benefits were quite
low, putting me below the poverty
level. As a single mom this was
quite a blow. I felt my life was
shattered at this point. Raising a
child in poverty, as compared to
raising a child on a physician's
income as I had hoped, was
devastating. Little did I know
things would only get worse.
Within the first year I gained 100 pounds! Having been thin all my life this was another horrifying slam. Then, as the years have progressed I got sicker and sicker, which didn't seem to make sense. I would often meet people who, when I told them my diagnosis, would say, "Oh, I know someone who has that, and they are able to work." It was as though they were accusing me of being a malingerer or something. As if it isn't bad enough to be desperately ill, then you have to put up with people who don't believe you!
Since 2009 I have become so ill that I am mostly bedridden. I had applied for long term care with the state. Long term care takes care of people who basically can no longer take care of themselves, and who need a nursing home level of care. I can no longer clean, cook, bathe, brush my teeth, etc. However, fatiguing conditions don't qualify, even though I also have extreme pain, too. Because my disability does not cause an inability to move my arms or legs, I didn't qualify. Never mind that I have absolutely no energy to do any of my so called "activities of daily living," nor that extreme pain prevents me from doing them, as well. It's these kinds of technicalities that are so frustrating for those of us suffering these illnesses. I once read a quote from a doctor who specializes in treating Fibro and CFIDS, that sufferers are just as debilitated as people who have late stage HIV or are on chemo for cancer. But, do we get the level of home care as those people? Not on your life! I was finally able to qualify for a power wheelchair this year, though, thank God.
2011 was a watershed year for me, in regards to my illness. I had become bitter towards my primary care doctor, because during each visit she would only allow patients to bring up two problems, no more. If you wanted to discuss anything else she said to make another appointment. Well, as anyone suffering these illnesses knows, we have a whole laundry list of problems. Plus, it is extremely difficult to make it to doctor appointments in the first place, and her wanting to have me return perhaps week after week to discuss everything was more that I could bear. I was trying to get through to her that something else is going on. I am just too sick and getting sicker. I truly felt early that year that I was close to death. I could not believe anyone can feel this bad and not be dying. I did a search on the internet for a doctor in my area that specializes in Fibro and CFIDS. I had done this search many times during the past 13 years to no avail. However, this time I believe Divine intervention stepped in and I found my current doctor.
On my first visit he had me fill out a questionnaire where I checked either yes or no to a list of symptoms. I had 97-98% of the symptoms. This was when he told me he feels I had been misdiagnosed all along and that I most likely have Chronic Lyme Disease. I was surprised. I knew little about Lyme, even though I had worked in the medical field for over 10 years prior to returning to college back in the mid-90s. But, I was glad to be getting to the truth of what is wrong with me. Tests confirmed that I was positive by CDC standards for Lyme, and that my CD57, a test that measures a specific Natural Killer Cell that only Lyme causes to be suppressed, was 54. A CD57 below 60 is highly indicative (basically 100%) that one has Lyme infection. Not only that, other tests indicated high levels of co-infection with Bartonella, Erlichia, Candida, Epstein-Barr Virus reactivation and HHV-6 reactivation. Besides the problems created by Borrelia (Lyme), these co-infections come with problems all their own. These infections have already caused serious neurological symptoms for me, gynecological problems, and now I've been found to have liver dysfunction and cysts on some of my organs. My spleen is also enlarged, and earlier this year I was hospitalized with Renal Deficiency. A growth has been found on one of my lungs that they feel is benign at this time, but needs to be watched. And, an MRI of my brain showed abnormal spots, probably from demyelination, as well as bulging of my optic nerve. I found out that these infections put me at risk for cancers, such as lymphomas, Multiple Myeloma, brain cancer, etc., Lou Gherig's Disease, Multiple Sclerosis (from HHV6), heart problems, and more. I also found out that my family was affected, too.
My mother had unexplained severe joint pain and fatigue starting not long after I was born. I am the oldest child of three. Her symptoms persisted for 10 years and then inexplicably disappeared. Doctors never could determine what was wrong. This was the mid-60s to mid-70s. Then, in the mid-80s she began experiencing extreme fatigue and body wide pain. She was diagnosed with Fibromyalgia and ended up on Social Security Disability. About the same time, my maternal grandmother was experiencing unexplained joint pain. Rheumatologists determined that she tested negative for Rheumatoid arthritis or even osteoarthritis, so her symptoms where never explained. Then she had to receive a pacemaker due to Sick Sinus Syndrome (interestingly, this is a known result of Lyme in some patients). She ended up passing away from Multiple Myeloma (one of the cancers sometimes attributed to Lyme). Since she is gone now, we cannot determine if she had Lyme, but we are suspicious. It has now been determined that my mom also suffers from Lyme. My mom and grandmother are from Iowa, but also spent vacations when my mom was young travelling the country and camping, so it is possible they got Lyme somewhere during those treks. Incidentally, my mom also has a pacemaker because of Sick Sinus Syndrome. Now, since I am a native Arizonan and lived here almost all of my life, where did I get Lyme? Was it passed in utero from my mother to me, as some studies have shown can happen? Or was it the one time I remember in the late 80s when I was bitten by a tick when living with my grandmother and her dogs? I seem to remember a red area around the bite that I thought was a slight infection. They say there are no Lyme ticks in Arizona, but those dogs travelled with my grandparents to other states when they went camping. Could the dogs have brought back ticks from a Lyme endemic areas? It would make sense that with people moving so much in this country that Lyme ticks could travel with their pets to new areas. But, I think it was most likely passed from my mother to me. Here's the reason why.
We have also determined that my sister is infected. She's had numerous medical problems. Abnormal clotting caused a stroke when she was only 39, and she also has a pacemaker for Sick Sinus Syndrome. She also suffers from fatigue and joint pain, and is also on disability. We are now urging my brother to get tested, because he experiences extreme fatigue which is now prohibiting him from working. My 18 year old daughter does not have insurance and we cannot afford to have her tested, but I am suspicious that she was infected by me during my pregnancy with her. She's had unexplained abdominal pain off and on all her life, pain in her joints and was born with a 1st degree AV heart block. Research has shown that children are born with this kind of heart block either when their mother has an autoimmune disease, or in the case of more recent studies, when the mother has Lyme. If this is being passed along through pregnancy, I am also concerned about my daughter's new baby, who also does not have insurance.
Not having insurance, or having insurance that denies coverage is a major problem. My daughter and granddaughter cannot afford testing, and I cannot afford IV antibiotic treatment, which my doctor says is my best chance for recovery, since I've been sick so long without treatment. I am taking oral antibiotics, which my insurance is covering, for now, but my doctor doesn't know if they will be effective because I have been sick so long, and am now very very sick. I am truly thankful I found my doctor, who is a Lyme sufferer, too, and who treats people from all around the world. I was lucky he has an office near my home, because I never could have afforded to seek treatment in another state. I know he is my only chance for survival, but I don't know if I will survive if I cannot get IV treatments. I may end up as so many others, a martyr in our fight for recognition and adequate treatment. If I pass, may my death be on the heads of those who put greed, money, and politics above dignified and humane treatment of their fellow human beings.
p.s. Please pardon me if I rambled, but those of you suffering from Lyme will understand that it's because of how our Lyme-addled foggy brains work. I just wanted to get my entire story out. Thanks for reading it, and I hope it helps someone else. : )
Best wishes,
Tonya Pierce
Within the first year I gained 100 pounds! Having been thin all my life this was another horrifying slam. Then, as the years have progressed I got sicker and sicker, which didn't seem to make sense. I would often meet people who, when I told them my diagnosis, would say, "Oh, I know someone who has that, and they are able to work." It was as though they were accusing me of being a malingerer or something. As if it isn't bad enough to be desperately ill, then you have to put up with people who don't believe you!
Since 2009 I have become so ill that I am mostly bedridden. I had applied for long term care with the state. Long term care takes care of people who basically can no longer take care of themselves, and who need a nursing home level of care. I can no longer clean, cook, bathe, brush my teeth, etc. However, fatiguing conditions don't qualify, even though I also have extreme pain, too. Because my disability does not cause an inability to move my arms or legs, I didn't qualify. Never mind that I have absolutely no energy to do any of my so called "activities of daily living," nor that extreme pain prevents me from doing them, as well. It's these kinds of technicalities that are so frustrating for those of us suffering these illnesses. I once read a quote from a doctor who specializes in treating Fibro and CFIDS, that sufferers are just as debilitated as people who have late stage HIV or are on chemo for cancer. But, do we get the level of home care as those people? Not on your life! I was finally able to qualify for a power wheelchair this year, though, thank God.
2011 was a watershed year for me, in regards to my illness. I had become bitter towards my primary care doctor, because during each visit she would only allow patients to bring up two problems, no more. If you wanted to discuss anything else she said to make another appointment. Well, as anyone suffering these illnesses knows, we have a whole laundry list of problems. Plus, it is extremely difficult to make it to doctor appointments in the first place, and her wanting to have me return perhaps week after week to discuss everything was more that I could bear. I was trying to get through to her that something else is going on. I am just too sick and getting sicker. I truly felt early that year that I was close to death. I could not believe anyone can feel this bad and not be dying. I did a search on the internet for a doctor in my area that specializes in Fibro and CFIDS. I had done this search many times during the past 13 years to no avail. However, this time I believe Divine intervention stepped in and I found my current doctor.
On my first visit he had me fill out a questionnaire where I checked either yes or no to a list of symptoms. I had 97-98% of the symptoms. This was when he told me he feels I had been misdiagnosed all along and that I most likely have Chronic Lyme Disease. I was surprised. I knew little about Lyme, even though I had worked in the medical field for over 10 years prior to returning to college back in the mid-90s. But, I was glad to be getting to the truth of what is wrong with me. Tests confirmed that I was positive by CDC standards for Lyme, and that my CD57, a test that measures a specific Natural Killer Cell that only Lyme causes to be suppressed, was 54. A CD57 below 60 is highly indicative (basically 100%) that one has Lyme infection. Not only that, other tests indicated high levels of co-infection with Bartonella, Erlichia, Candida, Epstein-Barr Virus reactivation and HHV-6 reactivation. Besides the problems created by Borrelia (Lyme), these co-infections come with problems all their own. These infections have already caused serious neurological symptoms for me, gynecological problems, and now I've been found to have liver dysfunction and cysts on some of my organs. My spleen is also enlarged, and earlier this year I was hospitalized with Renal Deficiency. A growth has been found on one of my lungs that they feel is benign at this time, but needs to be watched. And, an MRI of my brain showed abnormal spots, probably from demyelination, as well as bulging of my optic nerve. I found out that these infections put me at risk for cancers, such as lymphomas, Multiple Myeloma, brain cancer, etc., Lou Gherig's Disease, Multiple Sclerosis (from HHV6), heart problems, and more. I also found out that my family was affected, too.
My mother had unexplained severe joint pain and fatigue starting not long after I was born. I am the oldest child of three. Her symptoms persisted for 10 years and then inexplicably disappeared. Doctors never could determine what was wrong. This was the mid-60s to mid-70s. Then, in the mid-80s she began experiencing extreme fatigue and body wide pain. She was diagnosed with Fibromyalgia and ended up on Social Security Disability. About the same time, my maternal grandmother was experiencing unexplained joint pain. Rheumatologists determined that she tested negative for Rheumatoid arthritis or even osteoarthritis, so her symptoms where never explained. Then she had to receive a pacemaker due to Sick Sinus Syndrome (interestingly, this is a known result of Lyme in some patients). She ended up passing away from Multiple Myeloma (one of the cancers sometimes attributed to Lyme). Since she is gone now, we cannot determine if she had Lyme, but we are suspicious. It has now been determined that my mom also suffers from Lyme. My mom and grandmother are from Iowa, but also spent vacations when my mom was young travelling the country and camping, so it is possible they got Lyme somewhere during those treks. Incidentally, my mom also has a pacemaker because of Sick Sinus Syndrome. Now, since I am a native Arizonan and lived here almost all of my life, where did I get Lyme? Was it passed in utero from my mother to me, as some studies have shown can happen? Or was it the one time I remember in the late 80s when I was bitten by a tick when living with my grandmother and her dogs? I seem to remember a red area around the bite that I thought was a slight infection. They say there are no Lyme ticks in Arizona, but those dogs travelled with my grandparents to other states when they went camping. Could the dogs have brought back ticks from a Lyme endemic areas? It would make sense that with people moving so much in this country that Lyme ticks could travel with their pets to new areas. But, I think it was most likely passed from my mother to me. Here's the reason why.
We have also determined that my sister is infected. She's had numerous medical problems. Abnormal clotting caused a stroke when she was only 39, and she also has a pacemaker for Sick Sinus Syndrome. She also suffers from fatigue and joint pain, and is also on disability. We are now urging my brother to get tested, because he experiences extreme fatigue which is now prohibiting him from working. My 18 year old daughter does not have insurance and we cannot afford to have her tested, but I am suspicious that she was infected by me during my pregnancy with her. She's had unexplained abdominal pain off and on all her life, pain in her joints and was born with a 1st degree AV heart block. Research has shown that children are born with this kind of heart block either when their mother has an autoimmune disease, or in the case of more recent studies, when the mother has Lyme. If this is being passed along through pregnancy, I am also concerned about my daughter's new baby, who also does not have insurance.
Not having insurance, or having insurance that denies coverage is a major problem. My daughter and granddaughter cannot afford testing, and I cannot afford IV antibiotic treatment, which my doctor says is my best chance for recovery, since I've been sick so long without treatment. I am taking oral antibiotics, which my insurance is covering, for now, but my doctor doesn't know if they will be effective because I have been sick so long, and am now very very sick. I am truly thankful I found my doctor, who is a Lyme sufferer, too, and who treats people from all around the world. I was lucky he has an office near my home, because I never could have afforded to seek treatment in another state. I know he is my only chance for survival, but I don't know if I will survive if I cannot get IV treatments. I may end up as so many others, a martyr in our fight for recognition and adequate treatment. If I pass, may my death be on the heads of those who put greed, money, and politics above dignified and humane treatment of their fellow human beings.
p.s. Please pardon me if I rambled, but those of you suffering from Lyme will understand that it's because of how our Lyme-addled foggy brains work. I just wanted to get my entire story out. Thanks for reading it, and I hope it helps someone else. : )
Best wishes,
Tonya Pierce