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KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/17/2009 11:29 AM (GMT -6)   
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
 


2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009

Post Edited (KO-LD) : 6/18/2009 2:32:44 PM (GMT-6)


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/18/2009 2:33 PM (GMT -6)   
bump
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/20/2009 12:14 PM (GMT -6)   
pcpc you out there?
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/20/2009 12:28 PM (GMT -6)   

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.


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/20/2009 12:33 PM (GMT -6)   
bumping again for pcpc and KO-LD
 
and I'm betting that 14 yrs ago, many ER Drs would not necessarily know this about a bull's eye


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/21/2009 11:23 AM (GMT -6)   
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.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 6/21/2009 11:47 AM (GMT -6)   

pcpc,  Thanks for the info!  I found a picture of a urticarial rash, and it didn't look anything like the rash my son had.  I will continue to monitor my son for additional symptoms.  He just turned 15, so I was concerned when he went thru puberty, as this sounds like it sometimes triggers the LD to show itself.  If I need to test him that will be a problem.  His GP was very reluctant to run the WB, I had to insist, he wanted to do the ELISA which I firmly, but politely refused.
KO
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol stopped Zhang's after 6 months symptoms returned.  Started Buhner's protocol May 2009


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/21/2009 11:57 AM (GMT -6)   
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??


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/21/2009 12:06 PM (GMT -6)   
Oh I don't mind. I am an MD who has worked in integrative medicine for 25 years and grew up with Lyme and I have a medical partner who is an LLMD and I will probably do the LLMD training in October as my Lyme training is spotty but better than most! I will not answer if I don't want to...Lyme has taught me that! I am obsessed with this disease and plan to do a book on it so i like to be involved in this forum ( I think it's one of the best)-- i started my own blog site too. I am in the midst of IV therapy for my Lyme and have been sick for about 18 months- even with all of my training I didn't realize that I had active Lyme for a few months- it was so much like menopause!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/21/2009 12:24 PM (GMT -6)   
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??
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.

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