Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tick Bite


jesscarmel

Recommended Posts

AndreaB Contributor

Jess,

If you do get tested make sure they use Igenix Labs in California or order the paperwork from them yourself. The testing needs to be done early in the week so it is handled properly and doesn't sit in the post office over the weekend.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator
I think it's just a blood test because I know I've been tested and don't remember anything out-of-the-ordinary, so a dermatologist could probably do it for you.

Unfortunately Lyme testing isnt really that straight forward. False negatives are very common and I'm only aware of 2 labs that are reliable. One of the labs is Igenix....which is the lab my Dr. used.

Here is what one Dr. wrote about the testing.

False negative test results are the real problem in diagnosing borreliosis. Research has shown that you have to do the right test (the Western blot), done at the right laboratory (one that specializes in testing borreliosis), and done the correct way (shipped express delivery early in the week). The right test to screen for borreliosis is the Western blot. Research I presented in Bologna, Italy in 1994 at the international borreliosis conference showed this.

Other screening tests, such as the IFA, EIA, ELISA, and PCR DNA probe were often negative when the Western Blot was positive! Other doctors like myself who diagnose and treat a lot of borreliosis patients, go straight to the Western blot as their screening test.

Medical articles abound stating that it is best to do a screening test, such as an ELISA, and if it is positive, then confirm it with a Western blot. But the ELISA is often negative when the Western blot is positive so, the right test is the Western blot.

It lets you see exactly which antibodies are present. The "right laboratory" means one that specializes in borreliosis testing. In the past, I have done head to head comparisons with 3 different regular labs. Western blots were drawn and sent on the same day to 2 different labs. The labs that specialize in borreliosis testing typically found borrelia-associated antibodies, that the regular laboratories missed. If these specialty labs find a borrelia antibody, I trust it to be significant, because patients respond to antibiotics.

You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week. Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.

Testing for Lyme and getting a positive diagnosis (even when the disease is present) is not always easy. Its like Celiac in that the disease can be there but not showing up in testing....this problem is probably even worse with Lyme testing. Its all very frusterating.

rinne Apprentice

The important thing is to have a Lyme Literate doctor review the test results. A Lyme diagnosis is very tricky, the test needs to show not the results as not only positive or negative but also as indeterminate because a consistent pattern of indeterminates may show late stage Lyme.

i actually have an anxiety disorder and i tend to channel all my anxiety onto my health. i think i am projecting all my anxiety about my wedding whcih has been stressfull to plan onto this lyme thing. i probably will request a test but im not sure if that is being paranoid given i have no symptoms and really what looks like a red pimple or ingrown hair??!!!! i supposed it is easier to stress about this then all the details and family issues of the wedding

It sounds like a good time to have a massage or to do something else for yourself that relaxes you. It is interesting to me that you say you have an anxiety disorder, is this something that you have always had? I'm not suggesting it is because of Lyme but I know I had lots of anxiety about my health and it seems now that there was good reason for that anxiety.

What I have learned is that initially illness affects us on the metabolic level and that the conventional tests in our current health care system only show the effects of the illness once they reach the immunological level and manifest as damage in our bodies. This would explain why so many people go to doctors feeling unwell and are told, "there is nothing wrong with you." :(

tiredofdoctors Enthusiast

I would agree with EVERYTHING everyone is saying. Get the test. Go into the office and insist on it. Be firm. They won't like it, but I bet they'll do it.

I was treating a patient -- she was new -- and she had low back pain, sacroiliac dysfunction, etc. She wasn't able to come back for a week, because she and her family were camping. When she did come back, I asked her how she was feeling. She said that her back felt better, but she was SO TIRED and it just seemed like ALL her joints were sore. I was putting heat and electrical stimulation on her low, low back (!), and I saw a tick about 1" above her butt crack (sorry). I KNEW it was a tick, but I casually said, "Do you have a mole really low on your back?" -- I knew she didn't, because I had seen her the week before. She said that no, she didn't, and asked why. I said, "Well, I'm pretty sure that you have a tick on you and it's pretty large." She started screaming "Get it off! Get it off!" Since we're licensed to do scalpel debridement in our state, I figured I was O.K. with removing it. Prior to that, however, I had my secretary pull up Deer Tick, Lyme Disease, etc.

It was FOR SURE a deer tick, but it was engorged. The picture of one that had been on an animal for a week looked the SAME way on the internet. She also had a bullseye rash that was also a little "blistery" or "bumpy" looking in that area. I got the tick off (that sucker was VERY reluctant to come off), and then had to find a pcp for her. She didn't have one. I was fortunate that I was able to get her into a GOOD MD office, and even though they tested her for Lyme, they immediately started her on the antibiotics. They said they knew it was going to be positive, and there was no need to delay. They were right.

Go with your gut. If your PCP won't test you, find one who will. It's really important. You don't want that lingering around -- it is NOT good.

Good luck to you . . . . . Stay tough!!

Lynne

jesscarmel Enthusiast
The important thing is to have a Lyme Literate doctor review the test results. A Lyme diagnosis is very tricky, the test needs to show not the results as not only positive or negative but also as indeterminate because a consistent pattern of indeterminates may show late stage Lyme.

It sounds like a good time to have a massage or to do something else for yourself that relaxes you. It is interesting to me that you say you have an anxiety disorder, is this something that you have always had? I'm not suggesting it is because of Lyme but I know I had lots of anxiety about my health and it seems now that there was good reason for that anxiety.

What I have learned is that initially illness affects us on the metabolic level and that the conventional tests in our current health care system only show the effects of the illness once they reach the immunological level and manifest as damage in our bodies. This would explain why so many people go to doctors feeling unwell and are told, "there is nothing wrong with you." :(

ive had anxiety since a child and always have worried about every scratch and pain etc.....

well theres no point on showing my pcp the rash as he said if it doesnt spread its not lyme, so hes already made his mindup. the nurse practit who saw it said it was most certainly not lyme.

also i'm no doxycyline now for my cervix for 7 days- so maybe if i did have it- that would help. i may try and see the derma this week which is tough since im leaving friday to canada for my wedding and thurs is the holiday.

Jess

tiredofdoctors Enthusiast

The medication could also be why it doesn't look as bad to your PCP or NP. I would still pursue it. Since getting this stupid disease, my thought about investigating something is: can't hurt. might help.

Hope the dermatologist will help.

Hugs to you,

Lynne

  • 2 weeks later...
Lymetoo Contributor
Jess,

If you do get tested make sure they use Igenex Labs in California or order the paperwork from them yourself. The testing needs to be done early in the week so it is handled properly and doesn't sit in the post office over the weekend.

Yes!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
jesscarmel Enthusiast

so finally went to the derma today- the wedding sort of took over for a month.

she said it didnt look like a tick bite (which i know it doesnt necesarily look like a typical tick bite)

but it could be one or a spider bite or even a cyst. so she did a lyme test through quest diagnostics....but i know you guy said the tests arent so accurate and since i took doxy for ten days for something else that could maybe affect it????

jess

Rachel--24 Collaborator

Jess,

Congrats on your wedding!!

So the "bite" is still there?? Has it changed at all?

Did the Derm think it was a bite for sure.....I'm wondering if it could be something else since its been there for a couple months now?? My bite was there for 3 or 4 weeks. I think with Lyme the rash can stick around for a month or so....I'm not sure if it would stay for a couple months or longer though??

Quest is one of the worst labs for Lyme testing so even if you *had* Lyme you can pretty much expect a negative test. If you havent had any symptoms at all since the red spot showed up I really wouldnt worry too much but its still good that you're getting it checked out.

It bums me out that Dr.'s order a Lyme test from a lab that doesnt specialize in lyme and then base everything on those results.

From an article I read earlier today

LD is frequently misdiagnosed. Physicians frequently overlook cases of Lyme disease simply because they don
jesscarmel Enthusiast
Jess,

Congrats on your wedding!!

So the "bite" is still there?? Has it changed at all?

Did the Derm think it was a bite for sure.....I'm wondering if it could be something else since its been there for a couple months now?? My bite was there for 3 or 4 weeks. I think with Lyme the rash can stick around for a month or so....I'm not sure if it would stay for a couple months or longer though??

Quest is one of the worst labs for Lyme testing so even if you *had* Lyme you can pretty much expect a negative test. If you havent had any symptoms at all since the red spot showed up I really wouldnt worry too much but its still good that you're getting it checked out.

It bums me out that Dr.'s order a Lyme test from a lab that doesnt specialize in lyme and then base everything on those results.

From an article I read earlier today

It didnt sound like you had any symptoms at all and didnt experience any flu-like symptoms during the last couple months so you're probably ok. :)

hi rachel

yah i told the derma that it would likely come back negative and that there was only that one lab u mentioned that would show it (at the appt i couldnt remember the name). she had no idea what i was talking about. she said maybe it was a spider bite and the venom temporarily died my leg??!!! it has been 2 and a 1/2 months and it really hasnt changed at all.

im still nervous for the future b/c we have deer in the yard and our next door neighbour had lyme this sum mer from the backyard so i will have to be constantly on the outlook for lyme. i want to "treat" the yard with a tick treatment- maybe that will helpl. im scared to go in the yard now b/c of lyme :(

and you are right i never had any flu symptoms.

thanks for all your help!

Rachel--24 Collaborator
im still nervous for the future b/c we have deer in the yard and our next door neighbour had lyme this sum mer from the backyard so i will have to be constantly on the outlook for lyme. i want to "treat" the yard with a tick treatment- maybe that will helpl. im scared to go in the yard now b/c of lyme :(

Jess...I dont think an EM rash (which is the tell-tale sign of Lyme) would last for as long as you've had yours and go unchanged. Anything is possible but since you feel fine and didnt get any symptoms at all...its probably not a tick bite.

Just be aware if you *do* start to get any symptoms in the future. Its definately ok to be catious. If you know you have deer and you know the ticks carry Lyme then just be vigilant. Check for ticks, rashes, any strange symptoms that are Lyme related, etc.

You dont have to be paranoid about going outside.....just be *aware*.....knowledge is power. ;)

You can use that "Deet" tick repellant stuff, wear long pants and sleeves, light colored clothing....stuff like that might help for when you go in the yard....especially if you're nervous about it. Have your new hubby check you for ticks if you spend time out there.

Do they have tick treatments for the yard?? If they do and that would make you more comfortable...go for it. :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,499
    • Most Online (within 30 mins)
      7,748

    Kabotabob
    Newest Member
    Kabotabob
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Soleihey
      @Scott Adams Recently got blood work back and TTG antibodies went from 168.8 to 16.7 and deaminated gliadin was 22 (was not measured the first time). Is this a good start for an 11 month time frame? Just having a hard time with why my symptoms seemed to be flaring up again when my blood work has improved. 
    • dublin555
      I’ve been through something similar recently, and I know how frustrating it can be when nothing seems to work. Based on what you’ve described, it might be worth considering dermatitis herpetiformis, especially with the family history of celiac disease. Testing could give you some answers, and while online kits aren’t as reliable as a GP, they’re a good start if appointments are hard to get. I also found relief through medical cannabis for my eczema, at Releaf, a clinic in the UK that offers eczema medical cannabis treatment. They start with a low dose, adjust weekly, and track progress through online consultations.
    • trents
      Welcome to the forum, @Jaylan! Almost all of the symptoms and medical conditions you describe have been found to be associated with celiac disease. But they can also be caused by other things as well. There certainly is enough circumstantial evidence in your list of medical problems to warrant being tested for celiac disease. Ask your physician to order a celiac panel consisting of, at the very minimum, these two blood antibody tests: total IGA and tTG-IGA. Please do not attempt to limit your gluten intake before the blood draw is taken or you will invalidate the testing. Incidentally, celiac disease is often misdiagnosed as IBS.
    • Jaylan
      Hi there!  I’ve recently been tested for celiac disease, along with other autoimmune diseases. My symptoms started back in 2018 with joint pain in my knees. Since then, it has progressively worsened. I now have joint pain in both knees, elbows, and sometimes my shoulders. The pain is almost unbearable. I feel so stiff in the mornings, and this stiffness can last the whole day. I also experience swelling and warmth around those areas.   Other symptoms include IBS (diagnosed at age 16), restless legs, chest pain, tiredness, miscarriages, bloating, and sharp pain on the right side of my stomach. In the past, I’ve also had problems with a vitamin D deficiency, and my serum folate levels recently came back very low.   My question is: How likely is it that I have celiac disease?    
    • Rebeccaj
×
×
  • Create New...