Our Story By Joseph P. Orban, III Over the past year, I have been touched by Lyme disease in many ways. Little did I know that Lyme Disease had played a part in our family for over 15 years. T his past February, I started to become very dizzy and had a mental fog. Unable to concentrate, I soon dropped out of my masters degree program, which I was attending after work. As the weeks went on, my dizziness turned into a profound "seasickness" feeling that lasted for weeks. Unable to eat much, I started to lose weight. Soon I started to have anxiety problems, blurred vision, memory loss, weakness on my right side, and flushing. In time, I started to have profound feelings of faintness. One night, I ended up in the emergency room because I could barely keep from passing out. I had noticed how my symptoms would come and go, just as if someone had flipped a switch. Up until February, I was very happy with everything in my life, and all was going well. Suddenly, at 27 years old, my life was falling apart. After about three months of numerous tests, (including Lyme tests, which I asked for) nothing was showing up. Not once did the doctors mention Lyme disease, even though many of the medical technicians who administered the tests mentioned it. My doctors were perplexed. At first, they told me it was an inner ear virus. As time went on, my primary care physician started inferring there were psychological reasons for my illness. He often pointed toward work as a source of stress. I was adamant about the fact that I loved my job as an engineer, and found work to be very enjoyable. In fact, it was my inability to concentrate on projects I had handled with ease just months before that led me to believe there was a physical problem. Something didn't fit the picture. It all came to a head when he wanted to prescribe and antidepressant. It wasn't until I started looking around on the Internet to find what could possibly be making me so sick that I found a newsgroup about Lyme disease. I couldn't believe that others were out there with the same problems I had. Through the net, I also started to meet many people with multiple sclerosis who actually had Lyme. I had spent the past fifteen years watching my mother slowly digress from the effects of chronic progressive multiple sclerosis. Over the years our family had grown together to help her as best we could. She is now barely able to move her arms, and is confined to an electric wheelchair. I would read these stories to her, with the hope that maybe a miracle could fall upon our family. That was a major turning point for my family and I. W ith the help of the Lyme Disease foundation, I found a very knowledgeable doctor who has since helped me immensely. He gave me the latest Lyme tests, which were positive. I am now on IV treatment, and look forward to a recovery in the future. My Lyme doctor was very interested in my mom's health history. As a young girl growing up in Connecticut, she had rheumatic fever and was given penicillin as a prophylactic treatment to prevent strep throat. She maintained a daily pill of penicillin for the next twenty years. In 1981, at her doctor's recommendation, she stopped taking penicillin. He told her he wasn't totally sure she ever had rheumatic fever so many years before. It was that year she began to lose strength in her leg. After many doctors and a few years later, mom was finally diagnosed with chronic progressive multiple sclerosis. Over the years, she had strange growing rashes and periodic hair loss, which no doctor could explain. She had a Western Blot Lyme test in the late 80's, which we were told was negative. Recently, we made her an appointment with my new Lyme doctor. He gave her the latest round of current Lyme tests, which to our amazement came back positive. One evening, I came home to find my parents both taken by emotion. After asking what was wrong, she told me that the antibiotics were helping her. Throughout the fifteen-year battle to fight her disease, not once did anything help her. After many months on antibiotics, she has begun to move her toes and fingers something she had lost the ability to do many years ago. Although the road ahead will be a long on, we now have hope that had all but disappeared over the years. She is grateful to be given the opportunity for improvement. Over the past year, I have spent a lot of time reading about the different aspects of this disease; diagnosis, treatments, politics and scientific advances. Although many people are led to believe it is an arthritic disease, it is a multi-systemic infection. In my case, it attacked my neurological system. I never had one ache from it. Another misunderstanding is the interpretation of the more common antibody tests. When people take any sort of medical test, most automatically believe they are very accurate. My experience has taught me otherwise. I can only imagine the national uproar if the HIV test was as unreliable. We need more government support for education, insurance legislation to protect those who need treatments, and funding for additional treatment research. It is my hope that our experience will inspire others to educate themselves about the many complexities of this disease.
Posted by trails (Member # 1620) on :
heart warming, well written, thanks for sharing this story!
Posted by Boomerang (Member # 7979) on :
Man, we can sure identify with your story. Thanks for sharing.
Posted by shazdancer (Member # 1436) on :
Wow, the story of your mother is heart-rending.
And chalk up one more disease where long-term antibiotics is recommended.
The management of acute rheumatic fever is geared towards the reduction of inflammation with anti-inflammatory medications such as aspirin or corticosteroids.
Individuals with positive cultures for strep throat should also be treated with antibiotics. Another important cornerstone in treating rheumatic fever includes the continuous use of low dose antibiotics (such as penicillin, sulfadiazine, or erythromycin) to prevent recurrence. Posted by 6t5frlane (Member # 8628) on :
You mention the latest round of Lyme tests twice. What were they and whom did you use...Good Luck
Posted by Visual Afterimage Man (Member # 10435) on :
Wow.. how your story sounds so familar. I too started this disease at age 27 and determined that something was wrong as I struggled to handle my engineering projects. Strictly neuro explains my symptoms as well.. Brain Fog, Visual disturbances... that is until I started abx.
Hang in there.... you will beat this!
Posted by AutumnDay (Member # 9532) on :
Hi Joseph, Thank you for sharing your story. It is almost identical to my own. I hope that you and your mother have a lot of improvement with treatment. It will take a long time, trust me, I know, but you will get there. There is no where to go but up. Take care.
Beverley
[ 18. November 2006, 11:21 PM: Message edited by: AutumnDay ]
Posted by mbresearch (Member # 8929) on :
I have been researching the geographic similarities between MS and Lyme distributions for several years. Here is a link to a paper I wrote about these commonalities.
In the US, at least, where we see higher incidence of MS, we also see higher incidence of Lyme, and vice versa. This would suggest a common environmental agent at work in both diseases, consistent with your story.
Good luck.
Posted by lymednva (Member # 9098) on :
What an amazing story! I have two friends who have MS dx's and I think they probably have Lyme, one for certain.
I know if several others, but it's not the kind of conversation I ant to have with a stranger.
One has the kind your mom has and has had it since around the time her daughter, who is also 27, was born.
She is bedridden and can't use much of anything any more, even losing her energy to talk now. Her husband has to lift her out of bed if she is to go anywhere. She's gained a lot of weight, but doesn't realize it.
My other friend had a so-called rheumatic fever dx as a child, but never was certain what it was. She's had neurological problems since her 20's including trigeminal neuralgia, Meniere's, and MS.
She has no insurance, so she can't see a point in getting tested. She just had to pay out of pocket for arthroscopic knee surgery.
If she is able to get insurance through her state she may try for Lyme dx, but unless things change they wouldn't treat her, I'm sure!
Thanks again for sharing your story.
Posted by CaliforniaLyme (Member # 7136) on :
This story- like the other one I posted- is taken from the old Lyme Alliance story section (Lyme Alliance was great, I miss that site!!! Thank god Flash has survived*)!*)!! It is not my story, although it has many similarities as many of our stories do...
We have many MS diagnoses come thorugh our local support group- such a shame to think of those people who don't get correct diagnoses!!! Sincerely, Sarah
Posted by Monica (Member # 224) on :
Sarah, it's good to see you back here again. I'm an old timer and remember your thoughtful and relevant posts.
See my recent post in this section: Neuro says I'll never walk again ...
I'd be interested in your insight.
Posted by tailz (Member # 10014) on :
Wow. I just 'met' a guy on a dating site with 'MS', and I told him he really has Lyme or one of the coinfections.
I think this is what happened to me, too. Throughout my 20's I was on abx for 'acne' - I'm talking YEARS.
In my 30's I was on and off abx for 'sinus infections'. Consequently, my 'acne' flared every time I had a 'sinus infection', but since I was on abx every other month, it kept things at bay.
Consequently, as soon as they started refusing me abx in my late 30's and early 40's AND added steroids for the voice I lost, that was the beginning of the end for me. I never did get my voice back - vocal chord polyp.
I, too, went to sooo many doctors. I think last count was about 35, and that's just the ones I've seen in the last several years.
I dropped to 88 lbs, and because doctors are stuck on everything being 'psychological' in nature, my stressful life as a single mom was blamed - you know, 'poor coping skills'.
I was constantly urged to take antidepressants. I even admitted a benzo 'dependence' (Klonopin) - I wasn't abusing, but I did have withdrawal every time I tried to wean - which I did more frequently because I was tired of the psycho dxs.
I honestly don't even think the people who ARE abusing benzos are 'addicts'. I think there is something in benzos that calms the Lyme or blunts the symptoms. I think it's a shame that doctors then turn around and label people 'addicts' when all the meds are doing in the first place is suppressing Lyme symptoms.
Anybody else here accused of benzo 'addiction' or 'dependence'? I was so tired of the psycho babble that I cold-turkeyed my benzo over the summer. Wish I had done it sooner - I may have realized I was physically ill sooner, and not merely 'anxious'.
I can't seem to get doctors to believe me that 'addiction' and 'dependence' don't really exist in the context they think they do. I think anybody would become either of these things if it calmed the neurological/psychiatric presentation of Lyme.
Posted by CaliforniaLyme (Member # 7136) on :
Hey MOnica*)!*)! Of course I remember you!!! I am going to go find your post right now-!!
Posted by bigmamma (Member # 7181) on :
mbresearch,
You might be interested in this study.
Source: University of Southern California Released: Thu 10-Aug-2006, 08:40 ET
Multiple Sclerosis in Genetically Susceptible Twins is Augmented by Northern Environment
Newswise -- A new study of twins suggests that living farther north of the equator significantly increases risk of developing Multiple Sclerosis (MS) among those with genetic susceptibility due to some environmental factor.
By following more than 700 pairs of twins diagnosed with MS, researchers from the Keck School of Medicine of the University of Southern California found that people born in the north tended to come to physicians for diagnosis slightly earlier than those born farther south, and that the tendency for identical twins to both be diagnosed was greater in those born in the north.
The concordance (both twins being diagnosed with MS) among identical twin pairs born in the north was nearly twice as high as among those born elsewhere (18.6 % vs. 9.5%). There was significantly less concordance among fraternal twins. The results were published in the in the July issue of Annals of Neurology.
Locations categorized as ``northern'' included Canada or states at or above 42 degrees north, including Alaska, Oregon, Washington, Idaho, Montana, Nebraska, North Dakota, South Dakota, Wyoming, Michigan, Minnesota, Wisconsin, Connecticut, Maine, Massachusetts, New Hampshire, New York, Rhode Island and Vermont.
Twins were divided into two categories, either monozygotic (identical twins with the same genetic makeup, coming from one egg) or dizygotic (fraternal twins, coming from two separate eggs). An effect that is seen more commonly in the monozygotic twins suggests a heavier role is being played by genes.
``We've known that MS is more common the farther away from the equator you get,'' says Thomas Mack, professor of preventive medicine at the Keck School of Medicine of USC and lead author of the study. ``By looking at the number of times this occurs in twins - both identical and fraternal twins - we could see whether it was just a matter of latitude or if there is something else. This study suggests there's more concordance among identical twins, which means there is some environmental exposure and it is interacting with the genes.''
If environment alone was responsible for the increased incidence of both members of the twin pair getting MS, there would be similarly high concordance among fraternal twins, he says. The study did not suggest that, however, showing instead that both identical twins were far more likely to get the disease than both fraternal twins.
In fact, despite clear evidence of a much higher incidence of MS among women, the study found high concordance in both male and female identical twins, implying that mechanisms of inheritance are probably identical by sex. In other words, genetic susceptibility trumps the traditional bias against MS in most males.
Northern residence also contributed significantly to earlier onset of the disease. The researchers suggest that an early onset in the North could represent an early environmental deficit in protection, such as by less opportunity for early exposure to the sun, or for unknown reasons to an unrecognized causal factor, such as a virus. ``It may even be that exposure to the sun interrupts whatever effect a virus has,'' says Mack.
The study was supported by the Multiple Sclerosis Society, the National Institute of Neurological Disease and Stroke (a part of the NIH), and the National Cancer Institute.
[Multifocal central nervous system lesions --multiple sclerosis or neuroborreliosis?]
[Article in Polish] Drozdowski W. Klinika Neurologii AM w Bialymstoku.
Multiple sclerosis is the most frequent multifocal disease of the central nervous system, but in a diagnosis of atypical cases about 100 other diseases should be considered.
Neuroborreliosis plays a particular role among them, especially in endemic regions. Difficulties result from similarities of clinical symptoms and lack of specific diagnostic investigations. Diagnostic procedures in neuroborreliosis are mostly based on laboratory analyses and serologic examinations of serum and cerebrospinal fluid, in connection with a clinical picture and an epidemiological state.
Since the year 2001, multiple sclerosis neurological diagnostic is based on the diagnostic criteria established under the auspices of The US National Multiple Sclerosis Society and International Federation of Multiple Sclerosis Societies. Those recommendations regarding relapsing-remitting MS and primary progressing MS are discussed in this paper. Current knowledge of those diseases warrants cautiousness in the diagnostic of atypical cases.