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Lyme disease misdiagnosed, mistreated

Updated on June 22, 2011

Lyme disease in the US

Lyme disease a hidden epidemic
Lyme disease a hidden epidemic | Source

The mystery disease

A wide array of symptoms, coming and going, with a different diagnosis from each doctor you go to. Your joints are aching, your head hurts, hair is falling out, you start forgetting things, including basic grammar... You experience twitching and muscle weakness, weird skin problems and you are tired all the time, yet can't sleep much. What is going on?

The different symptoms are coming and going and you just gradually feel worse and worse. You are given pain killers and NSAIDs for your aches and pains and told that you are getting older. Like you did not know that... But it seems like you are getting older at the speed of light. At age 40 you feel like 70 and start to walk and look like 70.

Your hair loss is classified as "alopecia", which is just a fancy word for hair loss, which you already knew you had. The dermatologist might have diagnosed you with atopic dermatitis a.k.a. Eczema, or Psoriasis, Rosacea or Seborrheic dermatitis. You might be prescribed some creams and a shampoo (like ketoconazole) that makes your condition even worse.

Your vision is failing you too all of a sudden. You may need glasses, but that doesn't help the blurry vision, the light sensitivity and the pressure that you feel on your eyes. If you exercised regularly you have to give that up next. First you can't run without your ankles, knees or hips hurting and pretty soon you barely can go for walks. This is more than normal aging.

They might do some tests at this point and you might be diagnosed with some autoimmune disease because your ANA and RA (Rheumatoid Factor) is too high. You might also have thyroid issues or other hormone imbalances, that, if you are a girl, will lead to a diagnosis of menopause, even if you are only 40. As an added "bonus", you also gained weight (partially from the hormone imbalance and from the lack of exercise because of the pain).

The scariest of it all, you start to feel like you are losing it. You start forgetting basic things, names, misspell words and have scary dreams, anxiety attacks or feel dizzy or disoriented. You will be referred to a psychologist and you might be told that it's all in your head. You most likely will be put on various drugs for depression. The worst of it all, even though you have been diagnosed with multiple conditions, nobody seems to know why all this is happening to you.

Welcome to the illusive world of Lyme disease.

Lyme disease increase in the US

Increase of  CDC registered Lyme cases
Increase of CDC registered Lyme cases | Source

"The Bullseye" Lyme rash

Lyme rash - 30-70% of Lyme patients do not remember having the rash
Lyme rash - 30-70% of Lyme patients do not remember having the rash | Source

Lucky to be diagnosed

If you are "lucky", at one point, a doctor will run a Lyme disease test (preferably with Western Blot) and it will come back positive for Lyme. The reason you are lucky, because most of the time doctors don't run the test based on one or two symptoms, and even if they do, it tends to come back negative, even if you do have Lyme, so you will not get treated. Being diagnosed is clearly a big achievement in the road to recovery from Lyme.

Discussing the problems with current Lyme testing (including current CDC criteria) is not the subject of this article but more info can be found at:

If you have the typical Lyme rash, you may consider yourself lucky as well, because that warrants an initial treatment with antibiotics, which might (or might not) cure you. The sooner you get treatment, the better, because the less time the bacteria has to spread, the better the long term recovery tends to be. If you have the rash or have positive CDC tests you will typically be prescribed 20-30 days worth of antibiotics (typically doxycycline) and you will be "pronounced" healthy. If you continue to have symptoms passed the 30 day antibiotic treatment, you are pretty much out of luck. There is a huge controversy going on about not only the diagnosis but the treatment of Lyme disease, and patients with chronic (long term) Lyme disease symptoms rearly get the treatment they need.

Lyme disease bacteria

Borrelia burgdorferi bacteria - Lyme disease
Borrelia burgdorferi bacteria - Lyme disease | Source

Lyme - The Great Imitator

Lyme disease is hard to diagnose and if not treated promptly, even harder to cure. Ironically, by the time an antibody test shows up positive (if it does at all), you missed a crucial window of treatment (first few weeks after being infected) and could miss the opportunity for a full recovery.

Lyme is called the great imitator for a reason. It can trick the immune system, hide and spread throughout the body, the immune system helpless to stop it. It creates inflammation and autoimmune disease as the immune system is trying in vain to identify and neutralize the invisible invader. It can affect all parts and systems of the body, resulting in all kinds of symptoms that are diagnosed as separate diseases.

The cause of all this trouble is a spirochete bacteria, Borrelia burgdorferi, which is typically transferred to humans via ticks. It can change its form based on its environment and hides from the immune system with great success. The longer the infection, the harder to get rid of it.

Getting diagnosed is only the beginning for most patients. While it is a huge relief to finally know what had caused all the symptoms and that it was not just in your head, soon you will have to face the limitations of the current treatment protocols and you loose faith, yet again. You will discover that most doctors do not treat chronic, long term Lyme, in fact they deny its very existence. Getting medical care for Lyme beyond the 30 day antibiotic regimen is a challenge, to say the least. While you can have long term antibiotic treatment for acne, you can't have it for Lyme.

For more information on this dehabilitating disease, watch the multiple award winner, eyeopener film: Under our Skin


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    • RockyMountainMom profile image

      RockyMountainMom 3 years ago from Montana

      I spent my first three years misdiagnosed and am lucky to now be working with a lyme literate doctor. I relapsed this past spring, but am hopeful and still better off by far than I was before an accurate diagnosis. There is now a lyme disease section under health, but I am very glad to see Lyme disease covered here as well.

    • profile image

      CloudyDay 6 years ago

      Strange reading this. Describes my situation perfectly. Looks like the disease progressed the same way for me. After 9 months of treatment with a great doctor (that was not covered by our insurance) I'm doing well though not sure that I'm completely cured. Now my daughter has it too. Her western blot was negative. Terrible disease.

    • wannabwestern profile image

      Carolyn Augustine 7 years ago from Iowa

      Frightening but useful information. Thank you!

    • The Dirt Farmer profile image

      Jill Spencer 7 years ago from United States

      I hope this didn't happen to you! And if it did, hope you're doing better. Good hub. (Vote up.)