LYME DISEASE: Does Every Bullseye Rash Mean Automatic Disease?
June 4, 2017 1:12 AM Subscribe
So a long while back in Upstate NY I was hiking in the woods, felt a weird sensation on my arm pulled back my sleeve and there was a tick and around it a large red bullseye rash that was spreading.
I took the tick out - went home, called the doctor, told him what was going on and he said at the time, it wouldn't hurt to take antibiotics and to see him. I did - and fastfoward a decade or so I've been experiencing every symptom under the sun from chronic pain, rickety joints, muscle deterioration, spasms, neck issues, bone pain and blood disorders including anemia. The pain has gotten so bad in my hands that it's hard to function on a daily basis. All subsequent visits to orthopedic surgeons, rheumatologists, neurologist - were not conclusive (no rheumatoid factor in blood, have concurrent spinal issues and ADD that might be masking the Lyme) and ~still~ I have yet to be actually tested for Lyme.
Question - does every tick-related bulls-eye rash translate into Lyme?
I took the tick out - went home, called the doctor, told him what was going on and he said at the time, it wouldn't hurt to take antibiotics and to see him. I did - and fastfoward a decade or so I've been experiencing every symptom under the sun from chronic pain, rickety joints, muscle deterioration, spasms, neck issues, bone pain and blood disorders including anemia. The pain has gotten so bad in my hands that it's hard to function on a daily basis. All subsequent visits to orthopedic surgeons, rheumatologists, neurologist - were not conclusive (no rheumatoid factor in blood, have concurrent spinal issues and ADD that might be masking the Lyme) and ~still~ I have yet to be actually tested for Lyme.
Question - does every tick-related bulls-eye rash translate into Lyme?
Lyme is pretty notorious for not being easily diagnosed. Testing is not always reliable and symptoms are variable from person to person.
You clearly should be tested, but the list of symptoms you're talking about are pretty suggestive of Lyme and since there's no compelling reason to think that Lyme ISN'T a possibility, a course of antibiotics makes sense.
That said, the bullseye rash doesn't usually appear until long after the tick is done and gone.
posted by sciencegeek at 2:17 AM on June 4, 2017 [1 favorite]
You clearly should be tested, but the list of symptoms you're talking about are pretty suggestive of Lyme and since there's no compelling reason to think that Lyme ISN'T a possibility, a course of antibiotics makes sense.
That said, the bullseye rash doesn't usually appear until long after the tick is done and gone.
posted by sciencegeek at 2:17 AM on June 4, 2017 [1 favorite]
And further to sciencegeek's last paragraph, generally you don't expect Lyme if you remove the tick in the first 36-48 hours. Cite. The bacteria are in the gut of the tick, and they take their time starting to feast after attaching to the skin.
Which is to say, maybe you weren't bitten while walking in the woods (was the bite someplace that you'd immediately see?), or maybe it's something other than Lyme.
posted by Admiral Haddock at 2:35 AM on June 4, 2017
Which is to say, maybe you weren't bitten while walking in the woods (was the bite someplace that you'd immediately see?), or maybe it's something other than Lyme.
posted by Admiral Haddock at 2:35 AM on June 4, 2017
That said, the bullseye rash doesn't usually appear until long after the tick is done and gone.
I don't think you can generalize that. As far as I know, the Lyme I had for years came from a tick which I didn't remove for an entire day because I was very busy. Before I finally removed it, there was a bulls-eye rash, and I actually got a run of antibiotics immediately. But they were either not specific enough or not strong enough, and during the following years I had problems similar to the OP, though not as bad, and I had sudden bulls-eye rashes turning up out of season and with no ticks involved. One looked like a very rare form of breast cancer so I was through a cancer review before they figured out it was Lyme. That was scary. And if I hadn't suggested it might be Lyme, because of previous experience, it might have taken much longer for the doctors to figure it out.
posted by mumimor at 3:10 AM on June 4, 2017 [1 favorite]
I don't think you can generalize that. As far as I know, the Lyme I had for years came from a tick which I didn't remove for an entire day because I was very busy. Before I finally removed it, there was a bulls-eye rash, and I actually got a run of antibiotics immediately. But they were either not specific enough or not strong enough, and during the following years I had problems similar to the OP, though not as bad, and I had sudden bulls-eye rashes turning up out of season and with no ticks involved. One looked like a very rare form of breast cancer so I was through a cancer review before they figured out it was Lyme. That was scary. And if I hadn't suggested it might be Lyme, because of previous experience, it might have taken much longer for the doctors to figure it out.
posted by mumimor at 3:10 AM on June 4, 2017 [1 favorite]
Best answer: I live in prime Lyme disease area (the northeast US) and, as such, it seems like half of my Facebook news feed is about Lyme disease. A friend just posted this article the other day. The upshot? Lyme disease manifests in different ways and is often under diagnosed. Also, the Lyme test has a very high false negative rate, so even if you have the test and test negative, it's no guarantee that you don't have the disease. Find a doctor up on the latest research; your symptoms sure sound like Lyme disease to me, but 1) I am not a doctor and 2) this is the internet.
posted by Betelgeuse at 4:08 AM on June 4, 2017 [7 favorites]
posted by Betelgeuse at 4:08 AM on June 4, 2017 [7 favorites]
Did you have any prior contact with woodsy areas in the days or weeks prior to this incident? How big was the tick and what did it look like? Because if it was a dog tick, those don't carry Lymes. It seems more likely to me that you had already been bitten before the tick in question, and it just happened to be in the same spot because it was easy access.
My other question is what kind of antibiotics did you take? If the doctor didn't give you a strong enough course, or you didn't finish them, it may not have been enough. For contex, I live in SE Pennsylvania and around here all the docs give 1 month of I think Doxycycline or Amoxycyline.
Also if you live in these areas you may have gotten a new infection not linked to the first time. You don't get immunity from it, ever. Many people I know (self included) have had it multiple times. My mom got it twice just from living in a house next to a small patch of woods (probably from indoor/outdoor cats that love cuddling).
posted by DoubleLune at 4:41 AM on June 4, 2017
My other question is what kind of antibiotics did you take? If the doctor didn't give you a strong enough course, or you didn't finish them, it may not have been enough. For contex, I live in SE Pennsylvania and around here all the docs give 1 month of I think Doxycycline or Amoxycyline.
Also if you live in these areas you may have gotten a new infection not linked to the first time. You don't get immunity from it, ever. Many people I know (self included) have had it multiple times. My mom got it twice just from living in a house next to a small patch of woods (probably from indoor/outdoor cats that love cuddling).
posted by DoubleLune at 4:41 AM on June 4, 2017
Response by poster: This was not a dog's tick. I don't recall the type of antibiotic but this article posted by Betelgeuse sheds a whole lot of new light on what this disease is, how it's transmitted, including incubation time that can be as short as 15 minutes from initial contact to the disease's manifestation and how it needs to be tested and treated. Read. This can save lives, mine included. Thank you again Betelgeuse.
posted by watercarrier at 4:51 AM on June 4, 2017 [2 favorites]
posted by watercarrier at 4:51 AM on June 4, 2017 [2 favorites]
Question - does every tick-related bulls-eye rash translate into Lyme?
There are very few absolutes in clinical medicine (every __ equals __), but generally speaking erythema migrans rash (the "bullseye" rash) combined with known recent tick exposure in an endemic region is considered sufficient to treat Lyme empirically without blood testing. This isn't because rash + tick exposure = Lyme, but because rash + tick exposure is likely enough to equal Lyme that the benefit of treatment outweighs the risks of treatment.
I would encourage you to read information that comes from sources that are more reliable or incorporate the work of more experts. The CDC factsheet on post-treatment Lyme disease syndrome is a good place to start.
The upshot to me is that it would be a real shame if you were to anchor on to chronic Lyme, an extremely controversial diagnosis, and as a result fail to identify diagnoses or treatments that really would benefit you. If you don't have a primary care physician coordinating your care (as opposed to seeing a slew of specialists), I would strongly recommend getting one on board. Specialists tend to be great at ruling things out but not as helpful at getting to the bottom of a challenging problem. A good PCP can be your advocate and help you manage your symptoms.
posted by telegraph at 6:25 AM on June 4, 2017 [12 favorites]
There are very few absolutes in clinical medicine (every __ equals __), but generally speaking erythema migrans rash (the "bullseye" rash) combined with known recent tick exposure in an endemic region is considered sufficient to treat Lyme empirically without blood testing. This isn't because rash + tick exposure = Lyme, but because rash + tick exposure is likely enough to equal Lyme that the benefit of treatment outweighs the risks of treatment.
I would encourage you to read information that comes from sources that are more reliable or incorporate the work of more experts. The CDC factsheet on post-treatment Lyme disease syndrome is a good place to start.
The upshot to me is that it would be a real shame if you were to anchor on to chronic Lyme, an extremely controversial diagnosis, and as a result fail to identify diagnoses or treatments that really would benefit you. If you don't have a primary care physician coordinating your care (as opposed to seeing a slew of specialists), I would strongly recommend getting one on board. Specialists tend to be great at ruling things out but not as helpful at getting to the bottom of a challenging problem. A good PCP can be your advocate and help you manage your symptoms.
posted by telegraph at 6:25 AM on June 4, 2017 [12 favorites]
Note that the article Betelgeuse linked to doesn't say Lyme disease can be transmitted in 15 minutes. A doctor is quoted as saying, “There are studies that show that an attachment of 15 minutes can give you anaplasmosis,10 minutes for the Powassan virus, and for the different strains of Borrelia burgdorferi, we have no idea.” Borrelia burgdorferi is the organism that causes Lyme disease. Anaplasmosis and the Powassan virus are different diseases.
You should also be aware that not all doctors agree with the one quoted in the article. Here is another article that discusses some of the controversy.
posted by Redstart at 6:30 AM on June 4, 2017 [7 favorites]
You should also be aware that not all doctors agree with the one quoted in the article. Here is another article that discusses some of the controversy.
posted by Redstart at 6:30 AM on June 4, 2017 [7 favorites]
Best answer: I am a doctor. I am not your doctor. I am not an expert on Lyme disease. This is not medical advice.
I've read Metafilter for a long time and finally created an account specifically to reply to this.
The article to which Betelgeuse linked references Chronic Lyme Disease. A few other posts here alluded to this as well.
Lyme disease is a true medical diagnosis caused by a spirochetal infection conveyed by a tick. If untreated, over months and years it can cause specific systemic signs and symptoms. Ticks carrying the spirochete are endemic to certain geographical areas.
"Chronic Lyme Disease" is not a controversial medical diagnosis, it is simply not an accepted medical diagnosis. Unfortunately, this entity has gained traction over the past few years as a term to explain nonspecific symptoms, like fatigue, "foggy" mentation, joint pain, etc.
A few physicians have profited from some patients' desperation to explain their symptoms by fomenting skepticism toward the "medical establishment." These doctors term themselves "Lyme-literate" and say that conventional tests have high false-negative rates. Often, these patient have seen multiple physicians without any positive results and are relieved to have an answer and a diagnosis.
Unfortunately, these physicians then tell their patients to get PICC lines to get long-term IV antibiotics. These PICC lines have long catheters that track through the venous system and deposit medications right next to the heart. They are not meant to stay in for the months and years that these doctors often recommend. They are prone to life-threatening infections. The antibiotics themselves are not only useless (because there's no active infection to treat), they are also dangerous to use for months and possibly years on end. The benefit of such treatment is not supported by medical literature, an aspect "Lyme-literate doctors" advertise as a sign of a feature, not a bug.
In my personal opinion, no honest physician with an ounce of integrity would subject his or her patients to this type of treatment.
Bottom line, ask your doctor about this, but as you Google your symptoms in search of an answer, please be wary of the misinformation that is out there. Protect yourself and your well-being.
posted by aquamvidam at 9:57 AM on June 4, 2017 [39 favorites]
I've read Metafilter for a long time and finally created an account specifically to reply to this.
The article to which Betelgeuse linked references Chronic Lyme Disease. A few other posts here alluded to this as well.
Lyme disease is a true medical diagnosis caused by a spirochetal infection conveyed by a tick. If untreated, over months and years it can cause specific systemic signs and symptoms. Ticks carrying the spirochete are endemic to certain geographical areas.
"Chronic Lyme Disease" is not a controversial medical diagnosis, it is simply not an accepted medical diagnosis. Unfortunately, this entity has gained traction over the past few years as a term to explain nonspecific symptoms, like fatigue, "foggy" mentation, joint pain, etc.
A few physicians have profited from some patients' desperation to explain their symptoms by fomenting skepticism toward the "medical establishment." These doctors term themselves "Lyme-literate" and say that conventional tests have high false-negative rates. Often, these patient have seen multiple physicians without any positive results and are relieved to have an answer and a diagnosis.
Unfortunately, these physicians then tell their patients to get PICC lines to get long-term IV antibiotics. These PICC lines have long catheters that track through the venous system and deposit medications right next to the heart. They are not meant to stay in for the months and years that these doctors often recommend. They are prone to life-threatening infections. The antibiotics themselves are not only useless (because there's no active infection to treat), they are also dangerous to use for months and possibly years on end. The benefit of such treatment is not supported by medical literature, an aspect "Lyme-literate doctors" advertise as a sign of a feature, not a bug.
In my personal opinion, no honest physician with an ounce of integrity would subject his or her patients to this type of treatment.
Bottom line, ask your doctor about this, but as you Google your symptoms in search of an answer, please be wary of the misinformation that is out there. Protect yourself and your well-being.
posted by aquamvidam at 9:57 AM on June 4, 2017 [39 favorites]
aquamvidam, I had no idea the stuff you describe happens, that is awful and I agree that no-one should subject their patients to long term IV antibiotics in the manner you describe, and no patient should accept it. But I suppose the reason something like this happens is that a lot of patients are not diagnosed and/or treated correctly from the outset.
And though I am not a doctor, I have dealt with a (properly diagnosed and less properly treated) Lyme for several years and I am as shocked by the concept of a two-day prophylactic antibiotic treatment as I am by the long term IV treatment. I can see the point of early treatment — basically you get the antibiotics before it is possible to test for Lyme Disease — but even so that treatment needs to be efficient, or you might as well not give it.
Here in Denmark, chronic brain infection as a consequence of borreliose is on the official list of diagnoses and the government institute for infectious diseases has guidelines for diagnosis and treatment. They also claim that tests are valid for all patients 8 weeks after the infection.
posted by mumimor at 10:32 AM on June 4, 2017 [1 favorite]
And though I am not a doctor, I have dealt with a (properly diagnosed and less properly treated) Lyme for several years and I am as shocked by the concept of a two-day prophylactic antibiotic treatment as I am by the long term IV treatment. I can see the point of early treatment — basically you get the antibiotics before it is possible to test for Lyme Disease — but even so that treatment needs to be efficient, or you might as well not give it.
Here in Denmark, chronic brain infection as a consequence of borreliose is on the official list of diagnoses and the government institute for infectious diseases has guidelines for diagnosis and treatment. They also claim that tests are valid for all patients 8 weeks after the infection.
posted by mumimor at 10:32 AM on June 4, 2017 [1 favorite]
I am generally a fairly evidence-driven guy, but it's hard to ignore the number of long term issues that a small minority of people have after having Lyme. Of course, some doctors can take it too far in the way that aquamvidam describes, but what I have seen much more often is a total lack of awareness in some doctors of the literature around Lyme. The most common among these is an over reliance on a test with a known high false negative rate (for acute Lyme). From the OP's description, it seems possible that they were never even treated for acute Lyme, which is concerning.
posted by Betelgeuse at 11:17 AM on June 4, 2017 [2 favorites]
posted by Betelgeuse at 11:17 AM on June 4, 2017 [2 favorites]
I am a person who has had lyme disease twice. I also have family who were taken for thousands of dollars by chronic lyme quack doctors--one who left a patient's epilepsy untreated for years because the doctor said his seizures were clearly caused by chronic lyme.
I came in to say what aquamvidam did. However, also keep in mind that deer ticks are tiny, spread through large swathes of the US at this point, and you can certainly get lyme disease more than once. The first time I had lyme, I never found a tick or got a rash--the only symptom was chronic and unspeakably bad headaches. The second time, I had only a rash and no other symptoms. It is very easy to miss a deer tick, and I think it's absolutely worth it to go to your normal doctor and get a standard lyme test, given your symptoms.
I'd be very wary of any source that says lyme can be transmitted in 15 minutes, but that's kind of neither here nor there. If you're having random arthritis-type symptoms with no other apparent cause, getting tested for lyme seems sensible.
posted by PhoBWanKenobi at 1:59 PM on June 4, 2017 [1 favorite]
I came in to say what aquamvidam did. However, also keep in mind that deer ticks are tiny, spread through large swathes of the US at this point, and you can certainly get lyme disease more than once. The first time I had lyme, I never found a tick or got a rash--the only symptom was chronic and unspeakably bad headaches. The second time, I had only a rash and no other symptoms. It is very easy to miss a deer tick, and I think it's absolutely worth it to go to your normal doctor and get a standard lyme test, given your symptoms.
I'd be very wary of any source that says lyme can be transmitted in 15 minutes, but that's kind of neither here nor there. If you're having random arthritis-type symptoms with no other apparent cause, getting tested for lyme seems sensible.
posted by PhoBWanKenobi at 1:59 PM on June 4, 2017 [1 favorite]
Response by poster: Thank you for the replies. Unfortunately after being to so many doctors over the course of 8 years without resolution, I am feeling completely hopeless at this point. I've done a myriad of tests and still nothing conclusive, being sent home to marinate in my suffering. My blood counts were seen by a hemotologist due to Macrocytosis and low RBC/WBC. Was told to come back in a year for re-testing. No diagnosis and no treatment. Muscle is wasting away - no treatment - was told to swim. Neurologist told me I have ADD in spite of my telling him about my inability to use my hands due to the pain. Had bone scan done which showed inflammation throughout my entire body - from head to toe - nobody thought this was unusual either. When this happens, how much faith am I supposed to be putting in the medical profession at this point? I have so very little which is why I posted here - to get some idea of the correlation between the rash and the disease. It seems that it's up to me to put the pieces together, though my energy is clearly waning. Thanking God for the crowd-sourcing - sparking some new ideas and mercifully a healing of what has ailed me for so long. Cheers.
posted by watercarrier at 8:32 PM on June 4, 2017
posted by watercarrier at 8:32 PM on June 4, 2017
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posted by mumimor at 1:24 AM on June 4, 2017 [4 favorites]