Are my symptoms consistent with Lyme Disease?

Hi everyone,

I'm wondering if anyone with Lyme disease has any of these symptoms? I was diagnosed with fibromyalgia, but I've recently been wondering if my fibro diagnosis is correct, as I have new symptoms and some symptoms have gotten worse. I am going to talk to my doctor, but I think she is going to say it's just fibro and/or anxiety. These are the symptoms I've had over the past year and a half:

Constipation. Diagnosed with severe IBS-C.
Abdominal pain
Headaches. Had chronic daily headaches for 3 months, which then went away. They returned a few weeks ago.
Blurred vision. Went away after headaches went away, but came back about one month ago.
Waking up out of sleep with heart racing and lightheadedness.
Heart palpitations.
Insomnia.
Very poor, light, unrefreshing sleep for the past 2 months. Most nights I don't feel like I fall asleep at all.
Fatigue. Tired most of the time.
Back pain. Mostly mid and upper back.
Neck pain, usually on the front of my neck.
Chest pain. I've been diagnosed with costochondritis a few times, so I believe this is what it is usually.
Pain in my ribs and breastbone.
Cough (worse at night) and throat clearing. Probably from GERD (I was diagnosed in 2009).
Mild asthma (from GERD and probably allergies).
Bloodshot/red eyes. This has only been a problem for the past couple months (probably from lack of sleep).
Twitching. I had an eyelid twitch for one month and then random twitches all over my body.
Pain in my extremities (both arms and legs). Usually worse at night and they're dull, achy pains. Sometimes though, they feel like gnawing pains. They come and go; I can't tell if it's muscular, skeletal, or my joints.
Sciatica-type pain and numbness in right leg/hip a few times.
Heat intolerance.
Sore throat (could be from allergies or GERD).
Petechiae (tiny purple or red dots on skin). Usually develop after I get my blood pressure taken or lean against something).
Feeling out of it. I don't know how else to describe it.
Brain "fog".
Some anxiety, but only at night. Usually when trying to fall asleep and often is about falling asleep.

I also have eosinophilic esophagitis and moderate scoliosis.

Tests I've had done:

MRI of head (Results: Minimal punctate FLAIR/T2 hyperintensities are present in the subcortical & deep white matter of the cerebral hemispheres. Otherwise normal. Doctor said I had/have migraines).
CT of abdomen and pelvis. Normal.
Colonoscopy. Normal, except redundancy of my sigmoid colon.
Endoscopy. Positive for eosinophilic esophagitis.
Abdominal X-Ray. Normal.
Chest X-Rays. Normal.
Echocardiogram. Normal.
30 Day Cardiac Event Monitor. Normal, but did have one brief episode of SVT and numerous PACs noted throughout recording.
Allergy testing. Tested positive for some allergens.
Blood tests have all been normal, EXCEPT: low vitamin D level, slightly low potassium level, ferritin is on the lower side.
CRP and ESR both normal.
I have NOT had an ANA test or any tests for autoimmune diseases. Also, I have NOT had a Lyme titer test.

Some of my symptoms have improved, while others have worsened. Some have just developed a couple months ago. The pain in my extremities, sciatica-type pain, and severely poor sleep are most concerning to me and have been going on for 2 months (and headaches returned). I really don't know if this is just fibro and would appreciate any input. Thanks in advance!



*Cross posted in the Anxiety, Chronic Fatigue Syndrome, Fibromyaglia, Lupus, and Multiple Sclerosis forums.

Sounds like more than one pathogen to me. I've had most of those symptoms at one time or another.

mpostelnicu said...
Hi,

Given the battery of tests you have already done that proved you are as healthy as ever and you feel as sick as ever.... YES you should test yourself for Lyme.

It's rather funny (in a sad way) to read through your list of tests, brings back memories, i remember my first LLMD visit, i had 2-3 huge folders of tests and results, several large MRI films...

You should do the ANA test, though ....and the electrolytes. They can cause conductive issues (muscle twitches, cardiac problems, etc). But i'd say the most important test you need to do is a Lyme test. Send your blood to IgeneX or some other private lab that has sensitive testing for lyme. The stock CDC tests are horrible, i have had 3 ELISA tests, all negative. Those tests are really doing much more harm than good because are sending people on the wrong path, they are telling them "stop looking into lyme check something else" when they need to do exactly the opposite...

So you have muscle twitches, cardiac involvement and your MD has diagnosed you with ... fibromyalgia ?! Seriously ? Wow... You doctor never heard of Lyme Disease ? Where do you live ?

You know that when the dr gives you this diagnosis, fibromyalgia , is like saying "i know you are sick but i have NO IDEA what's causing it"...

I will be seeing my doctor this week and am going to ask about doing an ANA test. Also, the only doctor who has been concerned regarding my potassium level is my gastroenterologist. He recommended that further testing be done by my PCP in order to figure out the cause. However, my PCP and other doctors do not show concern over my potassium level. It is very frustrating. I've seen too many doctors! How do I get the Lyme test you're talking about? I will definitely look into it. I will probably bring up Lyme disease to my doctor, but I didn't realize that most physicians were unaware (or "illiterate") of Lyme disease. I'm worried she won't think anything of it. I live in Montana, but in one of the larger cities (haha albeit, still small). I have traveled quite a bit over the past five years though and have definitely spent time outdoors. Thank you for your feedback!

Traveler said...
I would most definitely encourage you to seek out a specialist, known as a LLMD - Lyme Literate Medical doctor to help you evaluate your symptoms. Testing isn't very good at all, so we don't rely on testing. You could have Lyme as well as other tick borne infections

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.
​

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 (or province) 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.

You can email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.

You 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​​


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

​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs 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:
http://www.ilads.org/lyme/treatment-guideline.php

Thank you for the thorough information! I have already emailed the ILADS website, in order to find a LLMD near me. Unfortunately, the nearest LLMD is 8 hours away. If I ask my PCP about Lyme and insist on a test, is there a way you would recommend going about doing that? I think that if I ask about Lyme, my doctor will just think I'm becoming a hypochondriac or blame my symptoms on anxiety. It is becoming very frustrating. Thanks again!

slee17 said...

Georgia Hunter said...
Sounds like more than one pathogen to me. I've had most of those symptoms at one time or another.

Did you have Lyme disease, in addition to one of the other tick-borne illnesses? Thanks for your response.

I did have Lyme, but we are all different. Go see a LLMD and get his opinion and guidance.

Stay away from mainstream medicine - they are completely clueless and incompetent when it comes to tick-borne infections. You need to find yourself a competent and knowledgeable LLMD who can diagnose you clinically based on symptoms and history. You have way more than Lyme. The status quo for tick-borne disease combinations appears to be Lyme, Bartonella and Babesia - at the very least. Also known as the three B's. Testing for these diseases is historically fallacious and unreliable, with many false negatives. Bartonella makes other diseases go into hiding. Treatment for Bartonella will make Babesia come out of hiding. You are in for a very long and difficult haul as far as treatment. Not all LLMD's are created equally, so you may have to shop around for the first few months until you find one who is a good fit. In the interim, join as many support groups as you can and do your research. Knowledge is power. The most important thing is to be your own advocate. If you find that you know more than your LLMD, run.

Post Edited (svalentina) : 12/1/2015 10:26:58 AM (GMT-7)

I ALWAYS have an extremely high ANA test(ANA just verifies there is inflammation in the body)..Diagnosed with MS and 1 month ago Diagnosed with Bart and Lyme. MY MS Neurologist and also Rheumatologist don't think much of my ANA results especially when other blood work does not point to Lupus of Rheumatoid arthritis...also ANA can be positive but a false positive shows up on healthy people as