Lyme and tick-borne rashes are not just “bull’s eye” rashes. Unfortunately, not many providers know this. They also do not realize that many with Lyme never get or see a rash. You can find other photos on the internet, but these are a good starting point.
I have heard stories of providers asking patients if they have had “a bull’s eye rash.” I thought maybe they were simply exchanging the word for “erythema migrans” and know they don’t actually mean “bull’s eye.” However, I have also heard various accounts of patients saying their provider said “yes, you have a rash, but it is not a bull’s eye rash so it must not be Lyme.”
From Dr. Elizabeth Maloney’s 2009 paper: Which can be found here
“An EM may have one or more of the following characteristics: homogeneously erythematous color, prominent central clearing, target-like appearance, central vesicles or pustules, partially purpuric, not scaly (unless topical corticosteroid creams have been applied or they are old and fading).19,29,39 And, it must be distinguished from: tick bite hypersensitivity reactions, insect or spider bites, contact dermatitis, bacterial cellulitis and tinea. 29,39 ”
I believe all providers in the US, especially those in the “severe risk areas” should read this VERY informative paper. I especially like how she uses words from some of the first researchers, including Steere and other IDSA guideline authors, explaining how this disease will present with a group of symptoms but not many exam findings.
It is time to end misdiagnosis because of faulty labs. If a patient goes to a provider with complaints of fatigue/exhaustion, myalgias, memory/cognitive problems, joint pain, headache and are tested for Lyme which comes back negative, it is a good idea to rule out other things but ALSO the differential diagnosis of Lyme should stay high on the list.
I have heard of providers seeing all these symptoms (and sometimes more), nothing else found when doing a good work-up for other things going on, then: give them a course of steroids (!!!), send them to a psychiatrist, rheumatologist, pain specialist, or orthopedist, or they just continue treating symptoms without any answers at all.
I don’t think these providers should try treating the Lyme unless the clinic/hospital sets up an ILADS treatment guidelines protocol. (they already use an IDSA guidelines protocol). If they can’t do this, I think as they should refer them to a Lyme specialist just as they have referred them to other speacilistts. They should give patients information from ILADS and IDSA and go through each set of guidelines for treatment from each and let the patient choose. Sometimes, there will only be one choice because the IDSA guidelines will state not to treat many of these patients.
Any clinic and/or hospital that does this, especially in the severe risk areas, will quickly achieve the desired status of being ahead of the game in fighting this very complex illness.
I know many of these places run on profit and reputation. They want to be seen as the best and attract people from all over the country because they do such-and-such better than the others. This disease has such a HUGE market that is untapped. There are so many wanting and needing treatment and so few places to get it.
When done using the current science, which is also in line with what the IDSA guideline authors originally stated (symptom rich and exam poor), using the ILADS treatment guidelines with advice from those who have been treating patients for years (like Dr. Jones, Dr. Jemsek, etc.), there would be very little risk and very much to gain. Places like Inanna House are seen as trailblazers and heros; giving to the very sick a place to finally get help. How can hospitals and clinics not want this?