Undiagnosed Lyme Disease and Fibromyalgia

There is a disease called Fibromyalgia (FM), although there is no diagnostic test for it. Most people that get diagnosed, do so after years of not only seeking, but begging for treatment for the relentless pain and numerous other symptoms. No I don't want to go back in time to when nobody believed this disease existed. However, the fact that the number of people reportedly having it now as compared to say even as little back as 1993, it makes me wonder, are doctors finally recognizing it, or is it their "trash can" diagnosis for patients who refuse to live out the rest of their days in pain? Fibromyalgia has so many symptoms it really could mock almost any disease, but Post Lymes Disease Syndrome fits the best.

Most people do not ask to see their actual lab work, and just go by their doctor saying tests are fine, or not fine. What a lot of people don't realize, as with any blood work, if it is a little off, the doctor rarely reports it to their patients or anybody else. My daughter had Lyme Disease when she was twelve, she not been the same since. She had the classic rash, everything. Unfortunately, even though she told both her father and myself immediately that she had these weird "bug bites with bruises" neither of us thought much of it, until the rash was severe, and she had headaches,which was two weeks after onset of symptoms. The doctor immediately recognized it, tested and treated it. One year later, one of those "circles" appeared, and no, hers didn't look like a "bull's eye", that's the description that tricked me into complacency the first time. It really did look like bug bites with bruises. When I took her immediately after seeing it appear again, they tested her, and told me it was negative. What they didn't realize is that I always get a copy of any and all tests done on any of my children. The doctor just said negative, not that she had four bands positive. When I questioned them on the four bands, they refused treatment, saying its not positive unless there's five bands. Well it should be obvious that if she was diagnosed and treated for it, and was once again showing symptoms and it was showing in her blood, even if it wasn't five bands, she needed treatment. I should not have listened and brought her somewhere else.

I am the opposite. I have been in pain for about three years now, and they finally diagnosed me with Fibromyalgia, or FM. However, I do not have "muscle pain" my pain is deep in my bones. I only tested "positive" in two out of eleven trigger points. In the beginning, I had severe fatigue, but that part is pretty much under control now. I spent my whole childhood outdoors, the woods across the street, the huge backyard, the campground. My daughter's symptoms "post Lyme Disease" and mine, are very much alike, and she spent far less time outside than I did, so I started to wonder about this correlation.

The symptoms of Fibromyalgia, is as follows(http://www.cdc.gov/ARTHRITIS/arthritis/fibromyalgia.htm) :

*Fatigue

*Tingling or numbness in hands and feet (neuropathy)

*Headaches, including migraines

*Problems with thinking and memory

Irritable bowel syndrome

Painful menstrual periods and other pain syndromes

Post Lyme Disease complications are as follows(http://en.wikipedia.org/wiki/Lyme_disease#Stage_3:_Late_persistent_infection ):

*profound fatigue

*shooting pains, numbness, and tingling in the hands or feet

*difficulties with concentration and short-term memory

*headache lasting years

bladder problems

facial palsy

If doctors treated for Lymes more aggressively to begin with, perhaps the numbers of people diagnosed with FM would change a great deal. I understand that it is important not to abuse antibiotics in anyway, as doing so causes Acquired Bacterial Resistance. If doctors used their own common sense and discretion though (if someone had symptoms, or if their labs showed signs of the disease ) abuse of antibiotics shouldn't rise. Prevention is certainly the best medicine, and medicine used last. Sometimes though medicine is unavoidable and Supervised Neglect is not the answer. Supervised Neglect is a term I learned a long time ago, and I was appalled that the term actually exists. According to http://medical-dictionary.thefreedictionary.com/ the term Supervised Neglect is defined as: a case in which a patient is regularly examined and shows signs of a disease or other medical problems but is not informed of its presence or progress.

Now in 2009, when reliable information is available at a click, by sites like CDC and and NIH, very reliable sources, shouldn't the public have the right to any pertinent information, like anything in our lab work being off, even if it's just a little bit? It's understandable that practitioners in the medical field don't want to alarm people. It's also understandable that sometimes doctors want to wait and see, since there are false positives sometimes, and yes false negatives too. So the doctors would rather follow closely and watch if symptoms develop. This would be fine in a time when people stayed with one doctor forever. Before, we never questioned our doctor, and the only information available is what he/she told us. So yes, this made the "wait and see" or otherwise referred to as Supervised Neglect approach a little more understandable. These days, generally if someone feels ill, and they are not getting better, and feel as if their doctor is ignoring their symptoms they go to another doctor. Sometimes many doctors, because those alarm bells the first doctor was trying to avoid are already going off in their head because they know they are not well, have already looked up their symptoms on the Internet and feel their doctor is making no progress in their diagnosis. So the medical practitioners need to get with the times so to speak, and stop using Medical Neglect because when anyone feels they have been mislead, misinformed or uninformed by their doctors, they will just keep changing doctors until they feel they have been heard and taken seriously.

As of 2005, there was an estimate of 2% of the population with FM, that's five million people. That's five million people, not only not working and on disability, but also not functioning to the degree they would like at home, and have a severe decrease in their quality of life. Then there's all those people who have these mysterious symptoms and try to ignore it and work, until they collapse, and absolutely can't anymore, and have themselves, and their doctors stumped by their mysterious lingering symptoms.

If you look up Post Lymes Disease Syndrome, the numbers are quite different, most information found says that only five percent of people who ever had Lymes will have PLDS (Post Lymes Disease Syndrome). However, the reported amount of cases of Lymes, rose in the US from 8,257 in 1993 to 27,444 in 2007. Those numbers are pretty scary for a fourteen year period. The highest amount of cases in New York, Pennsylvania and Connecticut. Remember, that's just the reported cases. Yes, doctors are recommended to report cases of Lyme's to the CDC, however, sometimes someone may never know that they even had it, they may have thought they had the flu or something, and as symptoms clear up at first, never investigate further. There are mild cases, people never sought treatment. Also all doctors are not required to report it. If you look at the CDC's number of reported cases, despite the severe rise in numbers everywhere else, South Dakota remained at one to two cases per year, that gap in numbers alone shows that not all cases are reported. So what about the undiagnosed Lymes patients, and the patients of doctors that do not believe in Post Lymes Disease Syndrome that never seek treatment anywhere else? They are lost in an unfortunate gap of care. Like I stated earlier on, the symptoms of Post Lymes Disease, and Fibromyalgia are almost identical. For some reason though most doctors don't believe in PLDS, and the information about it is hard to find, and it does not appear that they believe in a correlation between the two diseases. Perhaps that's because of the drastic increase over the last fourteen years. The medical profession hasn't had time to catch up to Lymes disease, and its possibility of causing a lifetime of maladies.

As a whole, society needs to be diligent with their health. It is our responsibility to take care of ourselves, and family, and seek treatment when we are ill. We cannot do that without doctors, they are very important in our lives and have worked very hard to be in their profession. However, without trust in each other, as in any other relationship, the patient/doctor relationship will deteriorate. There is nothing more intimate so to speak as putting our lives into someone else's hands so instead of using Supervised Neglect, or even thinking the patient is overreacting to symptoms, as a whole, people in the medical profession need to be more open and honest with their patients.

Just the fact that I could find some information on chronic health problems related to Lymes Disease is a step, but much more research really needs to be done. Once it was believed that FM did not exist, and its sufferers were hypochondriacs. It is recognized today as a true illness, but its not good in any extreme. If its being overdiagnosed, and the true culprit is PLDS, there won't be enough research done to fight it.