? for pcpc

pcpc,

I have a question regarding what an ER doc wrote after seeing my son's bull's eye rash. Here's what he wrote:

Exam reveals some healing, what appear to be insect bites in the lower extremities, erythematous, slightly raised. Some central scabs are noted. No vesicles, fluctuance or drainage is noted. The newer lesion on the left forearm appears to have an urticarial type component with some central raised areas, some surrounding erythema, minimally increased warmth, no fluctuance is noted. No streaking is noted. No ademopathy is appreciated. Unfortunately he didn't measure it, but it was quite large about 2".

Diagnosis: Local reaction to insect bite.

What he said was "it's not Lyme disease".

This was 14 years ago, while we were camping in Wisconsin. A family friend that was a nurse saw the bull's eye rash and said that it was a classic bull's eye rash and we should have a doctor look at it, which we did.

We didn't know anything about LD at the time and believed the ER doc. My son has over the years displayed some things that I now believe could be symptoms of LD. Just wondering what you make of the ER doc's report.

FYI it didn't look like any kind of bite I had ever seen before, or since, and it did look just like some of the classic bull's eye rash pictures that I have found.

P.S. I asked last year that a WB be done and the only thing that came back pos was p41 Ab. IGG, and p41 Ab. IgM.

Thanks, KO

Helping to bump back up:

well, I'm not pcpc and I'm not a Dr, but I've been reading and researching everything I can find on this disease. Everything I have read states that a bull's eye rash diagnoses Lyme. ie; nothing else causes a bull's eye rash, only Lyme. In the case of a bull's eye rash, treatment should begin and no lab tests are needed. Bull's eye rash MEANS a person has been infected w/ Lyme.

Band 41 indicates flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia. So my understanding is that only a spirochete infection would show on this band. For example, syphillis. So, given the rash and band 41, I believe you need expert help.

Anyone here please feel free to correct me if I am wrong.

Thanks for bumping this up as I hadn't seen it. The ER doctor's report does not describe a classic bull's eye rash- but being in Wisconsin it is hard to say if he/she knew what they were looking at...and an "urticarial" rash could appear similar to bull's eye to an inexperienced doc --esp in light of a nurse telling you it looked "classic".

The positive 41 bands both IgG and Ig M suggests tick borne disease.......but having only one positive is not specific. If you want to do more testing you can do an antibiotic urine PCR challenge with Igenex. I will post on this now so others can see it.

There are a few protocols but the Ignex medical director that I met at last conference recommends doing this if tests are inconclusive:

The patient takes Ceftin 500 mg twice daily with Zithromax 250 mg twice daily and collect urine for 3 days. The 3 urine samples from 3 day is sent to Igenex for PCR tesing. Antibiotics drive the Borrelia to the bladder where they can be detected. It is also a good clinical trial as you will see if there is any herxing- keep a good diary of your son's symtpoms- headache, brain fog, fatigue, aches during these days. Your doctor should call Igenex (1-800-832-3200) so you have the correct forms and containers. If it's been a year since testing and your son isn't doing well you could retest western blot but be sure to ask your doctor to check for 31kDa as this will increase specificty if bands are not confirming- if money is an issue and insurance won't cover these- just do the urine PCR with antibiotics. Godd luck.

pcpc, I'm really sorry to butt in here, but I must ask (cause i'm always out of the loop....) Are you an LLMD? If you are, Im sorry, I didn't know that -- I did not even realize you were a Dr! Do we have our very own on this forum? If you are, do you want us not to drive you crazy w/ questions?? or can we??

Thank you, pcpc! this is awesome! By 'growing up w/ Lyme', do you mean you grew up having Lyme? or just being surrounded by it? I am very sorry that you are so ill w/ this! At least you know a good Dr, huh? he he....

I posted posts that were way too long awhile back when I first set out on my current quest. So I dont' remember if you were any of the folks who responded, and i'm sorry -- I should try going back to search. Anyway, I don't need a lengthy total professional response, but am just curious as to what you might say about the first part of my signature. The experience I had in the early 70's that carried into the 80's. All that we were looking for back then was Rocky Mt spotted fever and I never had symptoms of this. IF this was lyme, then at some point it had to have resolved unless it truly went dormant for many years.

I will probably never know the answer, but will probably always wonder if it was a TBI that drug me thru that. And btw, back then, I never considered myself to be 'sick'. I did not experience fatigue until first diagnosed w/ depression (which I attributed to a bad marraige) and that resolved w/ meds. I knew my tonsils were bad and got them out. I never connected anything to the tick bite or connected any issue to another issue. I just took things as they came.

I don't want to say it was probably a TBI if it wasn't, so I'm not trying to get you to say that. But now, I will always wonder and will wonder what my LLMD might say. will there ever be any way to know w/ any probability??