LymeNet Flash: Confused about bullseye rash & test results

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Posted by JillAnne (Member # 8039) on :

Hello. [hi]

I have been reading this forum for days after a recent tick bite and bullseye rash. Very good information here so i thought I'd chime in with some questions/concerns.

I am 34 and had a tick bite 3 years ago with a small bullseye rash. I immediately went to a doctor who did no blood work (due to false negatives and such) and just put me on 21 days of doxycycline. I had a fever, body aches, etc.. and felt better three weeks later.

Fast forwarding....now I have had another tick bite in which I became ill 7 days later, with a larger bullseye rash and feeling like I was coming down with the flu. No fever, just extreme fatique and a general achiness all over. I went to an Urgent Care facility (no insurance) and again was put on a 21 day cycle of doxy. This time he did blood work for 4 possible infections. The lyme test came back negative (Western Blot) but the Erlichia test showed exposure in the past??? but no infection now.

I thought if you had the tick bite, and the bullseye rash that meant Lyme, hands down. I do feel better after a week on doxy but am wondering if I should pursue further testing. I don't want to go "searching" for things but have had two bullseye rashes in 3 years so I don't want to ignore something obvious.

Can anyone offer any info or suggestions? [confused]

Posted by lou (Member # 81) on :

If you catch this early, you should be OK. It is great that you were checked for coinfections too. How rare is this!

However, no test is totally accurate. There are strains and species of the coinfections that have no tests. Plus, your western blot for lyme was done this time before your immune system had a chance to develop antibodies. This is why doctor #1 didn't bother with tests, and why this negative doesn't mean anything. If you have a bullseye rash, you have lyme. Look in the newby links, top of this page, for the FDA testing advisory.

BTW, take pictures of bullseye rashes for your files. Keep them forever! At some point you may be dealing with doctors who doubt you ever had lyme, and you need this evidence.

Also, do you know about preventive measures? Seems you live in harms way when it comes to ticks.

Posted by JillAnne (Member # 8039) on :

Thank you, Lou! I thought the rash meant yes. We run an outdoor motocross park on 230 acres. I spend every weekend outdoors and could not possibly treat the whole area I work in. However, I have bought some insect repellent with deet and will be a faithful user. I worry alot about my two children, can I use products with deet on them as well?

I will check out the FDA testing advisory. We are in the process of obtaining health insurance so maybe the negative result at this point was not such a bad thing.

Considering what I have read about doxy, should I ask this doctor to prolong the treatment with two or three more weeks? Or will this amount kill the infection and I will be clear of it?

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by JillAnne:
I thought if you had the tick bite, and the bullseye rash that meant Lyme, hands down.

You got it! [Smile]

I would definitely ask the dr for another 3 wks to make sure it's knocked out. If it comes back after that, you'd best find an LLMD!!!

You don't want this long term! and PS...your dr most likely ran a test from the notorious Quest or LabCorp....they come up negative for Lyme OFTEN!!

Here is some info on testing:

REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochetes are deep in host tissue
5. Only blebs in body fluid; no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10.Utilization of host protease instead of microbial protease
11.Spirochete in dormancy phase
12.Recent antibiotic treatment
13.Recent anti-inflammatory treatment
14.Concomitant infection with babesia may cause immunosuppression
15.Other causes of immunosuppression
16.Lab with poor technical capability for Lyme disease
17.Lab tests not standardized for late stage disease
18.Lab tests labeled "for investigational use only"
19.CDC criteria is epidemiological, not a diagnostic criteria

FDA bulletin on testing:
http://www.fda.gov/medbull/summer99/Lyme.html

Even the CDC says Lyme is a clinical diagnosis.

Please do as lou suggested....get pictures of that rash!

And,

Posted by Aniek (Member # 5374) on :

The Lyme tests are not incredibly accurrate, so a negative could mean you have Lyme. You may want to talk to your doctor about continuing treatment, just in case. You are only talking about 3 weeks or so longer.

Posted by lightfoot (Member # 2536) on :

Bulls eye= Lyme!!! There is no question!!

I would take three months of doxy at 400 to 600 mg per day. I'm not a doc but have been thrown to the ground with this disease!!! I would advise taking nooooo chances!

Reagarding pix of the Buylls Eye......get a doctor to take the picture!!!! It has to be winessed by a doctor to mean anything in your medical records!!

Even you best LLMD's will only give it a glance unless it is documented by a doctor!!!

Been there and done that!!!

Good luck!!!

Healing smiles....lightfoot [Smile]

Posted by JillAnne (Member # 8039) on :

Thanks everyone for the replies! [Wink]

So, if I continue doxy it should go away or do I need to be re-tested? I definetely feel better after 8 days of meds but still have no energy.

As far as a picture, too late I only took one with digital camera when I first noticed it (10 days ago) and now it is almost gone??? It got to be about the size of a tennis ball (on my butt, no less) [Eek!]

Hopefully I will have no further symptoms, but down the road at least I know what to look for and have documented everything.

Anyone else here have a similar situation, with two rashes years apart, but mild symptoms?

Posted by castrong (Member # 7396) on :

I too developed a bulls-eye rash this past May. Went to my family Dr. who said it was Lyme and 14 days of doxy and out the door. I began researching and ended up here (thank goodness) and after getting educated, got myself to an LLMD.

My IgeneX testing came back postive for the 3 Bs. Interestingly, my LLMD said that because my testing came back positive so early after the rash, that the May bulls-eye probably wasn't my first exposure to Lyme. Since I had had NO symptoms that I could remember, I thought that intereseting. After we talked awhile however, and I mentioned to him that I'd had Bell's Palsy a couple of years ago, he said BINGO...that was probably right after my first exposure!

I've now been under Dx since May and thank goodness still feeling pretty good, but the idea that I have had these things multiplying in my body for several years with no symtoms that I recognized until the bull's eye in May is pretty scary!

Anyone who develops the bull's eye definitely should find an LLMD as soon as possible. Just feeling well like I did doesn't mean you don't have it or that it is "cured".

P.S. Since my IgeneX testing, I've had my husband tested (positive) and one of my married daughters who is unfortunately showing neuro-lyme (also positive :-(.