Sharing my story
~Lyme Disease & The Military~
Hello my name is Kelly and I would like to share my story with you about Lyme disease. I remember growing up hearing about this disease and how it caused a sore throat, flu-like symptoms and that a course of antibiotics pretty much would knock it out. I would have never in a million years dreamed I would be a victim of a disease that is not only hard to cure, but also the battle of fighting for proper treatment; It is a nightmare.
My story is a to-be-continued story as most of us are. I have tried to remember and document these events to the best of my knowledge. In 1997 we lived in Biloxi Miss. My husband was stationed in this area. Our hobbies were playing golf a few times a week, canoeing a few times a year; I loved to camp and water ski and just enjoy the outdoor life.
We would go to Georgia, Alabama and parts of Mississippi to play on the different golf courses. Now I have to tell you my golf games totally sucked! But I love the game. In 1997 I came down with the flu in the month of May or June. The symptoms I had were a very painful stiff neck, fever of 101, severe diarrhea, sore throat, swollen glands. This lasted for about a week.
I got over it, to only within a week or two be hit with these flu-like symptoms again. I never thought anything of it, just that I had a bad case of the yuck! As time went on I noticed I never got rid of the stiff neck or the diarrhea. A few months after this onset I became pregnant with our son. I still had the diarrhea and the swelling in my ankles, but blamed this on being pregnant.
The diarrhea I was told was the result of Irritable Bowel Syndrome. After my child was born I actually felt pretty good other than that the diarrhea was still with me. I was told it was from taking the iron pills while pregnant. A few months after my son was born I noticed I was getting worse with symptoms; I was getting achy all over, my shoulder, neck, hands, ankle, knees were all starting to hurt.
I developed a bilateral rash on both hands that covered the tops of them -- very red and inflamed and it did itch. Nothing I used on this rash would make it go away. I went to the doctor with these symptoms only to be diagnosed with Fibromyalgia. As I read about this disease I decided to go back to the doctor and talk to him about Lyme disease. He ran an ELISA on me and it came back positive (1.48).
I don't know what is high or low but he started treating me with Doxycycline (100mg twice a day). My sedimentation rate "sed rate" was 57; the normal range is 0-20. I carried this high sed rate for many months. When the Western Blot came back negative during the course of my treatment, they un-diagosed Lyme and pulled me off my medicine to say "no you don't have Lyme," because of the neg. WB.
There I went from doctor to doctor getting diagnosed from Fibromyalgia, to Chronic Fatigue to undiagnose with them. I had asked these doctors to run some more Lyme tests but they refused. I tried to talk to them about why a test could come back negative and they refused to listen. They've now said I don't meet the criteria for a clinical diagnoses of Lyme.
I went for a second opinion to another state and guess what? I got diagnosed with Lyme disease again! This doctor made a clinical diagnoses based on my symptoms, the positive ELISA, the Acrodermatitis rash on both hands,and the elevated sed rate that I had. He started treating me. He ran a Western Blot that came back positive for Outer Surface Protein C OSP C, 23 band).
It was not a positive CDC Western Blot. The visits to him became an out of pocket expense for us because the Military refused to give me the referral that I needed for a second opinion to see this doctor. I had Military doctors tell me "you can't have Lyme because you don't remember a tick bite," or "you can't get it here in this state," or the doctor that is treating me for Lyme is just telling me what I want to hear.
I told him I don't think a doctor would make such a diagnoses if he didn't believe I had it. His remark was "I could sit here all day long and diagnose Lyme if I wanted to." Well I finally just gave up on them and continued to see my doctor in Alabama. After 3 months of antibiotics I started to feel somewhat better. My husband got orders to Germany and I had to medically be cleared to come.
They needed to fax my medical records over to Germany from my doctor that was treating me so they could see if I would be cleared or not. Well un-fortunately they cleared me to come. When I arrived here and went to follow up with having Lyme, I got undiagnosed over the telephone. Their reason was the first Western Blot the military ran was negative and that I had taken enough medicine and I should be cured.
I never even got the courtesy to see an Infectious Disease Doctor for an office visit. Here I sit in a foreign country with Lyme disease, for these Military doctors to clear me to come, and now they have just undiagnosed another doctor's diagnoses. Actually all he did was confirm that the first diagnoses was correctly made by the Military. I then went from doctor to doctor again over here in Germany.
I have been diagnosed with (are you ready for this?) "An unknown illness." Quote from the doctor's mouth, or should I say horse's mouth was "You have an unknown diagnoses; many people have unknown diagnoses and have to learn to live with it. You have some sort of muscular problem but we will have to wait and see what develops down the road." Nothing like being told you have an unknown diagnoses huh? We all want to hear such words.
Well my PCP decided to run an ANA test on me to check for Lupus. The test came back a low positive. She wanted to send me to a Rheumatolagist for an opinion from him. Well I know everyone of you out there have probably experienced this nightmare with a Rheumatolagist . If not, you were one of the lucky ones. I am not saying they are all bad, so please any of you out there that stumble on to this story, I hope you take no offense.
I hope you educate yourselves on this disease. As I sat there in his office I couldn't believe what I was listening to. He stated "you do not have Lyme disease." He also said that all my tests were false positive, the rash was just a rash, and basically that my Lyme doctor was a quack. He stated that there are Lyme clinics cropping up all over the place and then he looked at me and said "why are you even here to see me?"
I said "because of the low positive ANA, they referred me to come and see you." He said "yes I know and I have already mentioned it to the doctor that sent you." He said "I felt I owed you at least a visit since how I was done when I got here." Well thanks but (NO!) thanks. I would have rather stayed home and watched soaps than to have to drive an hour and a half to listen to this bureaucratic bull crap!
As I sat there he got a phone call from another doctor and the conversation was about a patient he had that he thought had Lyme. The Rheumatolagist told this doctor that the patient did not have Lyme and to (NOT!) run any Lyme test, as they probably had Fibromyalgia, and to recommend to the patient to come to the classes that he taught on it.
He said, "I have one sitting in my office right now that was told she has Lyme when she doesn't." Needless to say I knew it was time to leave. He wanted me to attend to the classes he taught, but I refused. I then ended up in physical therapy for my shoulder; the collarbone became hyper mobil with inflammation, but they had no idea as to why. They had me doing excercises for it to build the muscles back up.
It did no good so I saw no reason to continue. I tried to get tests run like an MRI to see why I was having such problems but no such luck. I decided I would contact my congressman to let him know of my situation over here in Germany and hoped that he might be able to help in this matter. At this time it is under investigation.
I have been having symptoms still, such as painful stiff neck, shoulder problems, hands hurting, stiffness all over, flashing lights, ears buzzing, rash trying to flare up, memory problems (I get lost in my car for short periods of time), jaw pain hits me in spells, muscle twitching, fatigue is a gimmy, eye floaters I see these ~ ~ ~ ~, unexplained chills, numbness in arms and hands from elbows down, sleep disturbances, burning feeling in my shin bones, light sensitivity. I feel like a vampire.
I decided I needed to be tested so I did some research on Dr. Mattman cultures. I had talked to my primary care physician about enrolling me in this study and she said ok. She knew I needed some answers. I paid $200.00 out of pocket to have the test ran. I tested positive for live spirochetes in the blood along with cystic forms going into protective mode.
I was sent pictures of the spirochetes to give to my doctor. Well I will give you one guess what happened? Yes you are right. She got to talking to a few other doctors and they basically said the testis not FDA approved, so there for they do not have to except these test results. Well she ditched me and I lost $200.00 on a positive test that will not be used.
I was told that I do not meet the clinical diagnoses for Lyme disease and that they would not be treating me. Wow! What are the clinical diagnoses? I can't seem to get this answer out of them. So all my attempts to pull all the rabbits out of the hat have failed. My son Camryn is 2 years old and I am fixing to have a Western Blot done on him. I contacted a very well known doctor in Boston; as we know we don't like to mention doctor's names so I will not.
I presented to him through E-mail being that I am over here in Germany. The medical history, the pictures of my rash, the test results, the past and present symptoms and guess what people? He said I have chronic Lyme disease. He is willing to help these Military doctors in treating me if they will listen to him. At this time I have turned all this information over to my husband's commander, and I will have to wait and see how it is handled. This doctor is and Infectious Disease specialist, so wish me luck.
Well a week has gone by and nothing has been done yet. I will take the matter into my own hands once again. I have learned through all of this you are ALONE. The depression is hard to deal with at times. Can you imagine yourself being in a foreign country going through this will no help? It's more than I can bare at times, butGod gives me the strength to keep pushing forward.
This has been a very hard strain on my marriage as well. My anger a lot of times is directed at my husband. This was a voluntary assignment and I feel we should have stayed put in the states for a while longer. That's water under the bridge now and I just have to try to figure out how I am going to handle this situation. I am going to approach the doctors here with the information from the doctor in Boston.
If they refuse to help I will contact another source and see what rabbits I can pull out of the hats once again. Will keep you posted. I have a Web site called Sharing Our Stories. I hope that all of you will stop by and say Hi.
Kelly B's Story
I wanted to give everyone an update as to what is going on. I tested positive for Ehrlichiosis. The Infectious Disease doctor on base said that the IgM titers were negative at 1.40 and my IgG titers at 1.160 were of a past infection. He said I fought the infection off. Well that may be true but it also proves that the military mis-diagnosed Lyme disease now doesn't it.
I am still without treatment at this time because he stated to me that he does not believe in chronic Lyme. He said all my symptoms are related to the past infection. I guess that is Post Lyme Syndrome. My Babesia titers were 1.40 in the IgG and IgM tests. These were done at IgeneX labs. He said Babesia was also negative; that they had to be of 1.256 or greater.
I am still waiting on my son's Western Blot bands to come back.. I think he is negative, which is great. We will see. I will keep everyone posted as to the nightmare ride I'm on with Lyme and the military.
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