Lyme rash? & test question?

Discussion in 'Lyme Disease Archives' started by CelticLadee, Apr 16, 2009.

  1. CelticLadee

    CelticLadee New Member

    Hi. I appreciate your posts. I have been reading many this week but not all. The answer may be somewhere I have not read yet. Sorry but I need to get a bit of input today if possible.

    First, Can you have a bullseye rash minus the center dot? a 3" across circle. Pale red, uneven circle border between 1/8" to 1/4", no raised skin or crusty, normal looking skin as if red rash in under the top layer of skin, rash has been there for 8-9 month with little change at inside of upper arm.

    No known exposure to tick. Not in a high volume area for Lyme disease but nevertheless some do get it here. A dozen statewide reported each year but then how many not reported? Who knows.

    Second question: if your Lyme ANA screen, IFA, comes back negative sent from Quest Diagnostics in CA so therefore they did not perform the Lyme AB igG WB test, does that mean this test is useless?

    I read about using Igenex for most accurate test after the fact. Dermatologist also took a tissue sample and will get results tomorrow on it at appointment.

    Thanks for any answers or suggestions you can share with me.

    CL

  2. Nanie46

    Nanie46 Moderator

    Hi,

    Bullseye rashes can really vary in appearance. Not everyone who has lyme even had a rash.

    You may not notice the bite mark, or a rash can appear at a spot other than the bite site.

    It can sometimes be mistaken for a spider bite or ringworm.

    You are correct, a negative lyme screen is useless. It misses most cases of lyme.

    Even a western blot from Quest would be inadequate because they do not test for all bands and their testing methods are flawed.

    Testing is not foolproof, but Igenex is by far the best. They test for all bands and use more stains of borrelia bacteria when developing their testing methods.

    Lyme is NEVER ruled out by just a lab test. It is a clinical diagnosis based on a patient's history and symptoms and can be supported by labwork.

    99% of Dr's do not know any of this. It takes a good Lyme literate MD to understand lyme and possible coinfections.

    Ideally, you would go to www.igenex.com and either email them or call them for a free test kit.

    Then when you get the kit, find a Dr to order a western blot IgG and IgM, test #188 and #189....cost $200...must be prepaid with credit card or check. Igenex will send you a receipt that you can send in to insurance to see if they will reimburse.

    Dr's will tell you that you don't need it and you are wasting your time because your lyme screen was negative. This proves they know nothing about lyme.

    I will include some links for you to read:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    the paper above was written by a lyme expert... be sure to read the part on page 7 about diagnosing later disease...an ELISA is a lyme screen. Also look at the symptom list on pages 9-11.


    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    the above booklet has basic info and contains a comprehensive symptom list. If you have numerous symptoms, be suspicious.


    http://www.lymediseaseassociation.org/


    the above site has alot of great info....on the left side scroll down to the "photos" and you can click on examples of lyme rashes.


    How did your illness start, if you can remember? What are your symptoms?

    Come back anytime and ask more questions.

    Good luck!
  3. CelticLadee

    CelticLadee New Member

    Thank you very much Nanie46 for your thorough answer. I read all the links, pages and looked at pictures, etc.

    Actually it is my husband that has the rash and I am trying to help him. I am more in tune with message boards/health issues, etc. as I have had "fibromyalgia" for around seven years. In fact, we have been thinking my symptoms reflect Lyme disease. But that is another story. Anyway, when he first noticed the rash he also had strep throat. So he went to the walk in clinic and was cultured positive for strep & prescribed penicillin. The doctor looked at the pale circle rash and didn't say much except to say she didn't know what it was. That was the end of that. A few weeks later he felt like he was getting strep throat again, was fatigued, headache with slight fever. I had a Z-pak so told him to take it. He felt very good on antibiotics both times and afterward for a few weeks. The rash never did change much. Maybe got a little larger but not by a great amount. After the Azithromax he felt fine for weeks. When he went to the dermatologist ten days ago to find out about the rash she put him on Doxycycline and he is feeling quite good on it. Not like me. I take antibiotics and herx like crazy. All his blood tests are wonderfully normal; CDC, liver function, kidney function, etc. After using Doxy for a week with no change he started putting the Fluocinonide 0.05% cream RX'd to him. This is fading the rash finally. I do not want to ignore this circular rash if it is Lyme. I have read enough to know how serious it can become if ignored. I am not sure what to do next. I don't think the dermatologist will be much help. Will see what tomorrow brings when he goes back. Wish I knew if rash was Lyme or not? Is there any other circular rash besides Lyme & ringworm? We know it is not ringworm. Thanks again for your help.
  4. Nanie46

    Nanie46 Moderator

    You are welcome.

    I had a fibromyalgia diagnosis for 21 years. That and other diagnoses like CFS are a cop out.

    Dr's don't even bother to find out what caused you to become ill. Most likely these illnesses are from infectious causes.

    The borrelia burgdorferi bacteria can cause symptoms that are diagnosed as FMS, CFS, MS and many other illnesses.

    It is a clue that your husband feels better on antibiotics and that you herx. Both of those things can happen to people with lyme and coinfections. There are alot of other tick borne illnesses that the same ticks carry.

    Lyme and coinfections can also be sexually transmitted, transmitted through blood transfusion, transmitted from mother to fetus, and through breastfeeding. It is thought that mosquitoes, fleas and biting flies might possibly transmit them also.

    Take pictures of this rash ASAP before it fades any more. Take some close-up, and others with his face and a dated newspaper in the photo in case you need them later to show a lyme literate MD as proof.

    It's hard to say for sure if this particular rash is erythema migrans or not, but it could be.

    Regular Dr's will not really be able to help you, other than you might be able to get one of them to order Igenex western blots for both of you.

    You could each fill out the symptom checklist in the back of the booklet about Lyme basics, and take it, along with the info on page 7 of Dr Burrascanos's paper about diagnosing later disease.

    Tell the Dr that it is your choice to each have this test done and you are paying for it....you must insist......and ONLY through Igenex. Don't bother with other labs. Get test kits from Igenex first so you have the Dr order forms.

    Then get copies of the results and post them here.

    Also, I would advise you to go to lymenet.org.....click on flash discussion....click on "Seeking a Doctor"....sign up for free like you did here.....then post a message on the seeking a dr board something like this......Need a LLMD in Maryland.......or whatever state you are in...you can also include the closest larger city.......you will recieve a private message with names of LLMD's in your state.

    LLMD names are private and their last names and cities are not posted publically. They put themselves on the line to treat us because they are persecuted by the IDSA and insurance co's who say that chronic lyme does not exist and long term treatment is not necessary!

    Most, but not all LLMD's do not accept insurance because then the insurance co turns them into the medical boards and endangers their medical license.

    It all so frustrating and ludicrious since there is alot of evidence that chronic lyme is real and there are thousands of us to prove it....plus alot of success stories.

    Also, while you are on lymenet.org, also go to the Medical Questions board and post the details of both of your illnesses. Lymenet has a VERY active medical questions board with alot of very kind and intelligent people with alot of experience. I am also there with the screen name of Dekrator48.

    There are tons of people there who were first diagnosed with FMS, CFS and many other illnesses...or just alot of individual symptoms.

    For the title of your post use something like "New here, Help please: Husband and wife's symptoms and rash.. Lyme?????"

    Also, I'll tell you ahead to time to break up your posts there using only one or two sentences per paragraph...use spaces between sentences. Many people there have neuro lyme and their symptoms do not allow them to read long paragraphs without spaces.

    If they can't read it because of long paragraphs, you won't get as many answers. It's a wonderful board though. Others from here have gone there too.

    Keep forging ahead...you both sound very suspicious for lyme.

    Mine started with a sore throat and flu-like illness that I was told was viral. Often we have to figure out the cause of our illness ourselves....it happened to me.

    Keep in touch....and hope to see you on lymenet.org.
  5. CelticLadee

    CelticLadee New Member

    Thanks again for all your great help and suggestions. I took your advice and did go to lymenet, registered and asked questions.

    Looks like we need to get help from a LLMD to get to the bottom of this. We will be sure to use Igenex, etc. Thank you.

    I have learned so much today and am too tired to think now. Going to go sit back and vegetate in front of the TV now and watch a movie.

    Bless you for all your help.
  6. victoria

    victoria New Member

    I haven't been online for a few months, missed your post... How did you do with the MP if you don't mind my asking.... I also wrote you at the MP site with my email.

    all the best,
    Victoria




    [This Message was Edited on 07/11/2009]