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Help with lab results ... this is a novel.

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Posted 5/3/2017 1:32 PM (GMT 0)
Recently I was given Fluconazole, a generic for of Diflucan, to treat an itchy rash that was spread all over my back (I've had this rash in a smaller form for years, however recently it had spread and was emerging over my shoulders. It is now gone due to the Fluconazole). With three days-worth of the med left, the side effects were immense (achy, arthritic feeling in every joint; swollen, fluid-filled knee; 10 canker sores, flu-like feeling) and I ended up going in to see if I was allergic to it. The doc advised me to quit the med and ran a bunch of bloodwork.

While waiting for these results, I began my own search and found that my "side effects" were all characteristic of Lyme, in addition to many other daily issues I have: headaches, hair loss, stomach and digestive issues, hot/cold sensations, numbness in toes, can't fall asleep or stay asleep, neck pain, joint pain, random rapid heartbeat, TMJD, cold and tired all the time ... so many things that bother me on a daily basis, and that I have been in and out of the doctor for, are symptoms of Lyme.

I've been thinking for a few years that I have a thyroid issue (but tested negative), was told I have IBS, was offered (but declined) meds for chronic constipation, was on meds for years for fibromyalgia, in and out of the dentist for jaw pain, MRIs for migraines and daily headaches ...

And today, I was sent this from my clinic:

Lyme, Total Ab Test/Reflex:  Your Lyme results are normal.
Lyme IgG/IgM Ab <0.91
Range: 0.00-0.90 ISR
(Collection Date: 04/17/2017)

ANA w/Reflex if Positive:  Your ANA results are normal.
ANA Direct NEGATIVE
Range: NEGATIVE
(Collection Date: 04/17/2017)

She tested me for Lyme!

While the test says negative, should I pursue this any further? It has been years since my tick bite, probably five, and since there was no erythema migran that showed at the time, I didn't think anything more of it. However, now that I search for pictures of them, the rash on my back looks similar to some of the largely-spread pictures I see, though my rash was not in the location of the tick bite.

Could the medication I was on have knocked down my immune system enough for Lyme disease to show it's full self? I feel like my doctor thinks I'm a hypochondriac and doesn't take me seriously, but I just can't seem to find any answers to why I feel terrible all the time.

Thoughts?
Posted 5/3/2017 1:49 PM (GMT 0)
Hi Erindorkal!
Welcome to our community! I'm so glad you found us.
If you haven't yet, please do read through our 'new to Lyme?' thread as it's packed with helpful and important information.

For your test, yes, you do need to follow up on this! Being over 91 (whether your doctor recognizes it or not) combined with the symptoms, there's little doubt. You will need to find a LLMD in order to get the proper treatments.

Only about 10 -20% of those that develop a rash will get an EM - and only about 50% of those that have Lyme ever see a rash.

The rash doesn't need to be at the site of the bite. It can appear any place - or multiple places - on the body.

Can you post a picture of your rash? At first I thought you were talking about a Candida rash, but now, after you saying your rash looks like some you have found online, I'd love to see it to be more sure. You have to use a 3rd party photo hosting site, like tiny pic or photobucket, then get a link to share here.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​
​You can start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state)​area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


​ ​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​


Y​​ou can email ​​the​ Tick-Borne Disease Alliance at​: [email protected]

ILADS has their own referral system as well:
​ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php
Posted 5/3/2017 2:03 PM (GMT 0)
erindorkal, lyme disease tests are not perfected yet. They do have false negatives. The best lyme disease testing labs all have statements on the result page that say lyme is a clinical diagnosis.

This means that symptoms and history are more relevant than the lyme test. Even the test I had that was $210 says this on the bottom of the page.

Try this test of symptoms and see how you come out: lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

I highly recommend taking this test and printing it. It is so helpful down the road when you are feeling better. Sometimes we don't recognize the little improvements.

And here is another symptom checklist: /www.lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf
Posted 5/3/2017 2:10 PM (GMT 0)
The tests most doctors use for Lyme miss as many as 50% of Lyme cases (John's Hopkins did a study that showed they miss as many as 70%). I would seek out an Lyme Literate Doctor (LLMD) to get accurate testing through a better lab. If you enable your email and let us know where you live, the folks here can refer you to some LLMDs in your area.

I think almost all of us tested negative on the tests the CDC recommends (I did). Testing through a more accurate lab rendered a definite positive result for me.
Posted 5/3/2017 4:45 PM (GMT 0)
Thank you for the responses!

I took the test with the link provided by PeteZa and scored a 65 and couldn't believe some of the things I have going on that are associated with Lyme; night sweats, facial twitching, slurred speech when I'm in the cold too long, unable to sleep in though I need the rest, unable to drink alcohol due to horrible hangovers even with one drink, ears sensitive to other's coughs or random noises, unable to remember who I've told what to and multiple repeats of stories/topics to the same person, uterine ablation due to heavy, overly-frequent periods ... and I remember seeing somewhere that unintentional mouth biting is also a symptom, which I do not only when eating but even when talking!

I think I set up the PhotoBucket thing correctly for you to view a pic of my rash (taken at the beginning of April), however the rash is gone now after the Diflucan oral med.

Also, my email is set up to receive notifications of responses to this thread, so is that the same as enabling for recommendations?

I feel like I'm finally getting somewhere! Thank you all!

http://i1376.photobucket.com/albums/ah33/erindorkal/IMG_5965_zps4q5dzrut.jpg
Posted 5/3/2017 5:03 PM (GMT 0)
Yep, you got photobucket set up and shared the link so we could all see it! Thank you!
And, that looks like a fungal/yeast rash, and since it went away with the use of Diflucan, that pretty much confirms it. Do be sure to take a high quality probiotic 2 hours after each dose of abx to help keep that under control.

No, you don't have your email enabled for the forum yet. Go to my profile, edit profile, be sure your email is entered, click on 'show my email' and then be sure to scroll down to the bottom of the page and click on the submit button to save your choices. You will see the little envelop under your screen name 'lit' in blue - like it is on mine - when it's completed.

Keep asking questions!!! Are you currently seeing a LLMD?
Posted 5/3/2017 5:27 PM (GMT 0)
Okay, email set up.

No, not seeing a LLMD. I'm going to call my doctor tomorrow and set up an appointment and hope to get a referral to one. I also emailed you with my location to see if there are even any in my area. We'll see what happens.

I'm just so glad I stumbled upon this site this morning. I'm, sadly, hoping it is Lyme so I can start figuring out how to feel better and grow my hair back (the dermatologist I'm seeing for hair loss is stunned by how thin it is and is doing a biopsy next week because lab work indicated nothing as to why it's falling out so badly at my age, 34), among other things.
Posted 5/3/2017 5:28 PM (GMT 0)
Hi erindorkal - welcome!


Lyme, Total Ab Test/Reflex: Your Lyme results are normal.
Lyme IgG/IgM Ab <0.91
Range: 0.00-0.90 ISR
(Collection Date: 04/17/2017)

I think these test results show negative. (your result is less than 91which is normal range)

But, lyme disease should be a clinical diagnosis...with your symptoms - you should consider seeing a LLMD for an evaluation.
Posted 5/3/2017 6:01 PM (GMT 0)
I sent the email, and do be sure to have your thyroid checked because of the hair thinning. Quite a few of us have thyroid issues because of these infections. Also, be sure that they aren't just testing the TSH - you will need the T3 and T4 tested as well to know what your thyroid is actually doing.

And we understand hoping it's Lyme - lots of us here have hoped that! I did! At least I could finally put a name on my 'monster' and could then figure out a battle plan!
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