Jump to content
  • 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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

    3. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    4. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    5. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,358
    • Most Online (within 30 mins)
      7,748

    Lorna Wynter
    Newest Member
    Lorna Wynter
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.