11 Comments

Did You See a Rash? Most Lyme Patients Don’t

Studies show that most people who contract Lyme disease don’t see the tell-tale rash, increasing the need for doctors and the public to understand that not single symptom or test result determines the presence of Lyme.  Numbers are available, but the experiences of patients can help bring this point home.

Lyme Live in Montana

There aren’t many occasions for counting yourself “lucky” to have a rash.  But with the difficulties of diagnosing Lyme disease, a tell tale ring shaped rash accompanying your tick bite can make the difference between timely treatment or prolonged misdiagnosis and potentially permanent ramifications.  Unfortunately, even with a rash many people are still diagnosed, so there are many symptoms people should be watching for.

However, it appears to be (statistically) more likely that you wouldn’t see a rash, even if you have Lyme disease.  It also is surprisingly common to have the rash and still be sent away.

So, for the sake of helping others understand, please consider sharing the following answers in the comment section (you may have to scroll way down).  The answer to this question, when asked in Lyme support groups, is always informative, even when you are already aware of the statistics on this.

1.  Did you see a rash?

2.  Was it ‘typical’?

3. Did you have a rash and still get misdiagnosed?

Please share with even a one word answer to question #1, or as much detail as you feel comfortable sharing.  If you are not a lyme patient, take a look at comments here as an example of how easy this disease is to miss.

Please also share studies and articles regarding rates of Lyme patients reporting noticing a rash, if you’d be willing.  *Also, it’s interesting to see who had the rash and did get timely treatment (success for otherwise).

Thanks in advance to anyone willing to share.

I had a rash, as well as Bell’s palsy, but did not see the rash until 2 moths after my tick bite, when a hair dresser found it.  Despite rash, palsy, and countless other symptoms, I was  misdiagnosed for over 3 years based purely on my state of residence.

Even some of the sources attempting to dispell the myth enormously overstate the likelihood of seeing a rash.

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11 comments on “Did You See a Rash? Most Lyme Patients Don’t

  1. I never saw a tick. I did have flu symptoms in the fall of 2011 and developed a rash (like a heat rash) on my chest. I went to my primary care doctor and she thought that it was a virus going around. In June of 2012, I started experiencing joint pain in my hips and neck. I was diagnosed with Lyme in July 2012, was treated with 28 days of doxycycline. I am still fighting pain, fatigue, neurological problems.

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  2. I had a typical bullseye rash 17 years ago. I have tested negative numerous times, and as recent as last month. Doctors ALL told me you CANNOT get Lyme Disease where I live. I had Bell’s Palsy and seizures, and have horrible pain and severe fatigue ever since.

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  3. […] Answers are also desired regarding how many patients remember a rash in this previous post. […]

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  4. I saw the tick AND had the bullseye rash on my hip AND horrible flu symptoms / joint pain in 1996. My doctor at the time said it was not lymes and did not test me. In 2008, a different Dr tested me (I’m positive) and placed me on 30 days of anti-biotics (then she retired). Since then, no other Dr has taken the lymes disease diagnosis into account when treating all my other symptoms (chronic fatigue, chronic migraines, chronic all-over unexplainable joint/muscle pain, constant fevers, etc. etc.)

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  5. From Katie W. in Georgia:
    I was fairly lucky I guess… Began feeling tired in early August of 2000. Doctor thought I had mono due to fatigue and swollen lymph nodes. Came back negative and he was stumped. Sent another blood test to CDC in GA. I was already away at college for my sophomore year and had to come home to get antibiotics… Pretty sure I was only on antibiotics for 7-10 days. Never had a rash, but never found a tick either….

    That’s why I think I have chronic Lyme… Too short on antibiotics….

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  6. From Julie S.:
    Went undiagnosed for eight years in that time they acted like i was looking for pain meds. Then was told it was in my head. Also fibroid myalgia and MS. Finally diagnosed with lyme. Had to fight just to prove that i had it. And no i did not get rash either

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  7. From Lena M. *with permission:
    Ok. My daughter did not have the bullseye rash. Words like fibromyalgia, severe anxiety, major depressive disorder and bipolar disorder have been batted around, and those probably would have stuck if I hadn’t had a friend whose daughter has Lyme who encouraged me to have her tested. No CDC or IGenex positive results but had enough +’s and indeterminates on her IGenex that if one indeterminate had been positive she would have been considered positive for Lyme. She has all the classic symptoms of Lyme, Babesia and Bartonella.

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  8. From Sandra V.:
    Mine started with a rash from my ankle to my groin.It was there a long while.Before that tick bit me I was healthy and had no ailments a mother of three boys.I gymed twice a week and everythi g was fine until that holliday in far northern Transvaal that time

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  9. From Janet M.:
    In 1994 I removed 4 deer ticks after walking through some tall grass, and a month later I came down with a horrible flu like illness, but it was worse than any flu I’ve ever had. I lost 20 lbs in four days. I called the hospital twice, and saw the doctor three times over the course of ten months before I was diagnosed. All the while I asked “could this be lyme disease?” everyone poo poo’d the idea. It was not until the test came back positive 10 months into the infection, that I was taken seriously. Since then I have been much more pro active. If I develop symptoms after a tick bite I insist on being treated, and viola, I promptly get better. Out of 5 cases of lyme, (and two more for my husband and son), the ONLY time a doctor would have correctly diagnosed lyme disease is when a rash was involved. Otherwise they are very likely to miss it.

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  10. No tick, no rash. I figured out when I was bitten after 2 years undiagnosed. Never got flu symptoms, but had 3 co-inf: EBV, BABESIOSIS, and BARTONELLA. I didn’t appear symptomatic for 6 months, that’s when my left knee started killing me. No swelling in joints, just severe pain. I’m mostly neuro. 2 types of seizures (including grand mal) from limbic system damage, adrenal insufficiency, loss of dexterity in both my hands (I was a violinist, and I can’t write well due to tremors). CNS and PNS damage, as well as hormone wackiness. Left side permanently weak, with severe clonus in left leg. Paradoxsomal segmentive dystonia. I left out cognitive issues and photophobia. Vision blurriness, hallucinations, floaters, and trouble focusing on text (this small font is killing me). Skin infections (lots of pimples on body, but not face. Butterfly rash. Magnesium and folate deficiency. Severe balance problems. Entire spine into pelvis pain. Sensitive spots on the back of my head. Heart palpitations, fluttering, abnormal BP with severe tachycardia (resting pulse up to 156. Facial pain radiating into jaw and teeth. Constantly sleeping. Anxiety about leaving bedroom, let alone the house. Suicidal thoughts with some cutting (not an attempt) and depression. Heat intolerance and flushing. Numbness in both hands along with parathesia. Small nerve damage causing discoloration of hands, legs, and feet (many mistake for Raynauds). Stenosis in right arm, can’t measure BP. O2 and glucose levels can’t be monitored through fingers due to decreased blood flow. Build up of mucus in throat, making breathing difficult, shortness of breath, air hunger, chest pressure. Probable muscle atrophy. No appetite. Vaginal bleeding 6 months straight, extremely heavy. Overload of estrogen, so put on BC with just progestin to help. Still randomly bleeding. Lyme rage. Been suffering 9 years but have gradually gotten symptoms down but not permanently gone. Working on getting biofilm out of jugulars. But I have been with one of the best LLMDS in the country and on antibiotics long term. But guess what? I’m off almost all non essential meds and my husband and I are going to try to get pregnant very soon! It’s been a long road and I’ll always have problems, but life is life and you have one shot so this disease won’t keep me from a family and going to med school to be a LLMD. Probably forgetting stuff, but that’s what I can give you!

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