Lyme Disease: Stories From the Front Lines of an Epidemic – Amalee

The heroine of this Lyme story has much to share. She is an intelligent and articulate Southern Bell who hails from Atlanta, Georgia. She is 43 years old and a mother of three, whose troubles began in August of 2010, with what she thought was a “bug bite”. It turned out to be that, all right but also so much more.

And as out Georgia Belle does not wish to be named specifically herein but has asked me to choose a pseudonym for her. I shall designate her henceforth as Amalee.

Amalee is “all about getting the word out”, and she adds that she is humbled by so many of the stories she reads in the forums…but her tale is, personally, just as humbling.

But let’s respect her wishes now, and get on with her story. Let’s get the word out…

Amalee had an outdoor job working for her brother’s company; I’ll not get too specific to protect her but let’s say it was in the landscaping/gardening fields.

One night after work, Amalee discovered that she had a very itchy bug bite on her abdomen. It was a little worrisome but not really frightening and since she was working for a family company she had no insurance, and so she did what most of us do when we have a bug bite…she let it go; at least until it became a serious issue.

Which it did.

Amalee got very, very sick.

Between August and February of that year, she went to the ER on 6 different occasions and saw several doctors in between.

Amalee lost forty pounds in those months because she could no longer really eat. She suffered extreme stomach pains whenever she ate and those visits to the ER failed to come up with any reasons why.

She was referred first to an internist in Dalton, Georgia, who examined her in a cursory fashion and then asked her many questions about anorexia and also about her illegal drug use.

Amalee did not use drugs and did not have any psychologically based food phobia or anorexic tendencies but she could not convince this doctor of those things and so he dismissed her and sent her on her way.

For her this was actually even more distressing; she had made the appointment only because her mother and sister had insisted and she herself had not wanted to go because she was afraid that she had cancer and, if that were the case, she really did not want to know.

But to be treated so cavalierly was actually a good deal worse, as she was still deathly ill and had no answers.

She sought out the aid of other doctors…but had real difficulties in finding anyone who would take her seriously. She says she felt “haunted by [her] chart” from the first doctor. The one who had accused her of mental illness, suggested antidepressants, and impugned her honesty.

She says that by the fifth doctor she was beginning to feel understandably defensive…especially as no amount of diet changes had actually helped and she still could not gain any weight.

Amalee’s tale gets even more incredible. During her search for help she saw forty plus doctors, thirty two of them in the Dalton area, and was continually informed that she was depressed and that she needed to quit boycotting foods.

Far from boycotting foods, Amalee was eating like a starving lumberjack; she was out eating male friends in the two hundred pound range, she was eating like she was starving….which she was. Despite all the food.

But no one was taking her seriously. Even members of her own family had quite believing in her, after all one can only hear so many doctor’s telling a loved one that they are crazy before one starts to believe that maybe the loved one is crazy!

But there was evidence to testify to Amalee’s sanity for those who choose to look. In November of 2011 her gallbladder gave up the fight. Already prone to kidney and gall stones, Amalee finally had a gallbladder test that showed that her tired little gallbladder was operating at less than 25% functionality and needed to come out before it died completely.

Being uninsured, Amalee had to put this off until she found a surgeon who offered to operate her as part of a program that covered “Indigent people”. But even with her gallbladder removed, Amalee’s relationship to foods did not really improve in the long term although she does note some short term relief; and she was next diagnosed with probable candidiasis.

She says that by now she had developed a healthy fear of death, that she truly believed that she was dying. She said she would get “shaky hungry” and that her hands would draw up toward her body.

This mother of three next sought help at Emory University’s hospital and was informed by their gastrointestinal specialist that she should really get help with her depression issues. He told her that if she did not seek psychiatric/psychological aid then he would be unable to care for her.

And the doctor she had been seeing in Dalton also formally refused her further care. She tried another doctor and was again subjected to a huge battery of blood tests and all sorts of small items came to light but nothing that could be named as the root cause of her illness.

By now she had heard of Lyme disease – primarily by doing all the research the seriously ill tend to do on the net, and she began actively seeking the Lyme tests she was reading about.

Her doctors were suggesting Lupus, MS, adrenal issues and everything else under the sun, but to them Lyme was not even a blip on the radar.

Amalee diagnosed her self, not just with Lyme, but with began to find patterns that would confirm this diagnoses officially later.

She flared when she moved – and Lyme is often triggered by stress – she flared at other times when she felt anxious or under pressure.

She devoured symptoms lists and matched them to her own symptoms; to the swollen lymph nodes, the fevers, the weight loss, the chest pains and the heart issues. To her chronic insomnia, neuralgias, and gout like symptoms.

And she got another new doctor.

Sadly by this point, she had also developed a, well let’s call it a neurosis that I have now seen in many Lyme patients. Having been told over and over again that she was crazy, poor Amalee began to wonder if maybe she was not in fact crazy…and so when she met her new doctor she either downplayed or failed to mention some of her apparently more “outrageous” symptoms. Ones that she had learned from her other doctors were “improbable’.

This would slow down her diagnosis and her healing but it was a behavior that she had been taught by ignorant doctors who choose to believe their egos rather than the sick woman in front of them.

There was more blood work, and ultrasound of her breast and chest (to check for cancers or heart issues), tests for her joint pains.

And a referral to a rheumatologist for the “carpal tunnel syndrome” in her right hand. She had also added a very stiff neck to her list of symptoms at this juncture and a rheumatologist was the right person for that issue as well.

In March, she began to see a general practitioner in Villa Rica, Georgia.

Amalee says she was really getting tired of the needles but she agreed to get further blood work done due to more new symptoms which included odor sensitivity, hair loss, vision changes, problems with her left hand, noise intolerance, and other sensitivity issues.

She also mentions a feeling similar to constant low grade flu, a sort of general malaise.

At this point Amalee becomes vehement saying, “I would have tried anything that might have helped, even tree bark.”

Like most Lyme patients she was also having problems with medication conflicts and with her insurance company.

And while things are slowly getting better for her many of these issues still persist.

Even so her message to the world is that her primary empathy is now with people who have the disease and don’t know it. She is trying to help other people to become more aware and she encourages testing for any anomalous symptoms that might be Lyme.

She is also trying to help her 15 year old daughter, who wants to sleep all the time, and has other Lyme symptoms. So far her daughter has tested negative but with the utter lack of reliable testing this is not truly surprising.

She has made a point of going back to all of her doctors with her positive test results in an effort to educate them and to spread awareness, and amazingly she has even had one of those doctors acknowledge ignorance. Granted only verbally, but even so that is quite a coup in the Lyme world.

Finally, Amalee notes that she hopes to get well and to become a public speaker. She says she is not interested in changing the world but hopes that she can reach just one person, any one person, and help them.

Thank you, Amalee, for sharing here. This might help you reach that goal!

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