Negative Western Blot, & No Bull's Eye Rash, Not Lyme, Then What?

[Jessica_Elizabeth]

Hi Everyone. I was recently Dx with Hashimotos disease, and I posted these symptoms on the autoimmune disorder forum, but I thought I'd post here as well.  Lately, I have been finding what I think are very small ticks (I have come across a few of them, randomly, in my condo, one was crawling on my bed! Ack!) Anyway, they are pretty tiny, don't necessarily look like what I associate with a tick, but when I looked up pictures that's what they looked like.  Anyway, for the last couple of years (since I moved into the condo, actually) I have been experiencing bizarre symptoms.  Virtually everything has been negative, and I've been boucing from doctor to doctor.  I was Dx with Hashimotos about two months ago, but I am worrying about Lymes Disease.  I have had no rash.  Anyway, here are my symptoms.

Jessica’s Symptom Timeline


June/August 2006:
• Doctor put me on Cymbalta
• Moved into condo
• Body still healing from past with eating disorder, things seem to be going well (recovered since early 2006)
• Quit Smoking (smoker for 10 years)
• Oral Surgery (Wisdom teeth) * Slow, painful recovery – symptoms began: Excrutiating headaches, Vision disturbances, Sinus problems, stabbing pains up left side of face, extreme exhaustion, cannot sleep enough (Followed up with my surgeon, exam and x-rays showed no abnormalities in healing)

 Somewhere in this time frame I was Dx with ADHD and put on Adderall XR

September 2006 – April 2007
• Profuse sweating despite temperature
• hot/cold sweats
• migraines
• TMJ/tooth grinding
• neck stiffness
• constant re-occurring infections (mostly strep & sinus, continuous antibiotics, no lasting help.)
• energy decreased further
• waves of nausea (seemingly random)
• severe light sensitivity
• droopy left eye (almost partly paralyzed), occasional pulsating of left eye
• memory starts to decline, easily confused, easily distracted
• heart palpitations (saw cardiologist, heart is in perfect condition).
• Dx with insulin resistance (pre-diabetes) and put on Januvia.
• Switched from Januvia to Actos
• Hungry all the time, weight gain
• Switched from Actos to Metformin 500mg 2/Day
• Little improvement in symptoms, not much
• Vision gets really bad, depth perception problems very debilitating and affecting my driving
• Skin begins to burn and itch
• Develop severe restless leg syndrome
• Muscle pain and weakness so severe it hurts to move
• Feet & ankles swelling often
• Short term memory severely impaired
• Ringing in ears
• Pins and needles feeling in feet/toes, constantly getting bruises/cuts, not knowing how/when
• Always at the Emergency Care Clinic, sick non-stop: infections, strep throat, sinus problems, canker sores, etc.

April 2007 – October 2007

• Start going to doctors regularly
o Doctor finds no major abnormalities, refers me to an allergist (allergy tested – normal)
o Xrays, CT Scans – normal  
o ENT – blood work okay, ANA negative
o Develop constant lingering bitter/metallic taste in my mouth
o Acid reflux gets worse
o Blood sugars not controlled, often very low
o Metformin decreased from 500mg AM & PM to 500 MG AM
o Begin taking ibuprofen or Tylenol to function through the day (control pain, headaches, inflammation)
o Start seeing ENT in medical center
o Tonsillectomy October 2007
o Slow painful recovery
o Sore throat never went away after surgery
o On and off post-nasal drip  

December 2008-Current
o Dx with Autoimmune Thyroiditis after thyroid ultrasound and evidenced hypothyroid in blood work, otherwise blood work mostly normal
o Dental work, aggravated TMJ, headaches, neck stiffness, facial pain
o Hot flashes, on and off fever
o Random nausea, occasional vomiting
o Energy decreased
o Bowl problems (bowl urgency or constipation, irregular/abnormal patterns, not well digested)
o Small pin sized bumps on skin, occasionally itchy and inflamed
o Generally just don’t feel well, ever …
o Hand & Feet Severe Pain, Cold/Sweaty Toes
o Body/muscle aches increase (Pretty constant, but gets worse with cold weather)
o Continuous post nasal drip, non stop despite medication and nose sprays
o Sore throat (steady since late October 2007)
o Left eye feels gritty and like there’s pressure on it  
o Occasional difficulty breathing, feel throat closing

[PlateletGal]

CFIDS and/or fibromyalgia are other possibilities.

[patsy10]

Ticks usually aren't found randomly in peoples homes.  They are usually found on pets, picked up in grass etc..I really do not think what you saw are ticks.  Not to say though that you don't have lyme.

[Carol in PA]

I looked at the picture, and I cannot tell how many legs the insect has.
Can you get a magnifying glass and examine it?

Ticks are arthropods, like spiders and lobsters.
They have eight legs, whereas insects have six legs.

I also cannot tell how large the insect is.
If it has six legs, my first guess would be some kind of beetle.

You can google for images of ticks.  There are several varieties, and the nymphs are tiny.

Researchers also believe that tick borne infections can be spread by fleas, mosquitoes, and biting flies.

Carol

[Jessica_Elizabeth]

Oops, here is the link http://tinypic.com/view.php?pic=zmzi1u&s=3

[Jessica_Elizabeth]

Here is a picture (magnified) of an insect I found in my house.  I have found many of them, they are tiny, but I do not know what they are.  It just so happened this one we found was dead.  Any ideas?

[patsy10]

There is also a form of lyme-like disease called Masters Disease.  It's from the bite of a Lonestar tick.  It is present mostly in the South as far as I have read.  It is not detectable on any kind of lyme testing as far as I have researched.

[tory2457]

You sure are going through a lot, hang in there ok? What I can suggest, is learn all you can about lyme disease....Here's a few places to start. Becoming educated imo, is one of the most important thing you can do.

ilads.org
This is a website loaded with information, written by Lyme doctors or LLMD -Lyme Literate Medical Doctors. The testing for lyme, the reasons why you don't always get a rash, why most of us with lyme test negative,etc are explained.

lymenet.org
this website is filled with people who have lyme or people who are looking for answers. There is also a Seeking a Doctor section: people will help you locate a doctor. A LLMD!

Bottom line is this, lyme is a Clinical diagnosis....because testing for lyme isn't foolproof. There are over 300 strains of lyme and lots of co-infections. Most of the sickest people test negative..even through IGeneX labs. Standardized testing only tests for a few lyme bands, while IGeneX tests for all the lyme bands.

From what I read about your symptoms...imo, I think you should think seriously about finding a reputable knowledgeable LLMD....we can get better, we can lead normal healthy lives IF we educate ourselves and find doctors who can help us.

I wish you luck, and of course good health.

About your ADHD: lots of lyme doctors also treat this as well. Here's a website about brain infections, Bi-polar, ADHD, etc.  
thehumansideoflyme.net

[babsesl]

Yes, these certainly can be symptoms of Lyme.  I had/have many of them myself.  It is not necessary to see a bullseye rash or to actually test positive for lyme. Many people don't.  Lyme is well known for false negatives; appx. 25-30%, I think.  The ticks to watch out for are the very little ones, tiny- in fact.  So many of your symptoms are identical to mine, so many.  Took me about a year to be correctly diagnosed.  Instead of trying to find what was causing all these problems, they would try to treat each individual problem.  I too, got diabetes and had: nausea, sore throat, gritty eyes, blurred vision, stiff neck, hot flashes, severe decrease in energy, sleep problems, itchy skin, hyperventilating, acid reflux, restless leg syndrome and on and on.  You have to find an expert in Lyme. They might use Igenex Labs, not the local Quest labs, etc. They are a better lab for diagnosing lyme.  Your pcp probably won't be much help.  For some reason, almost twelve years after I went through this, doctors are still not as educated as they should be.  Try the Lyme Disease Foundation.  Maybe they can help you locate a doctor in your area.  If you are in the northeast, hopefully, you'll be able to find someone without too much trouble.  There is a lot of good information in this forum from others who have gone through the same thing.  Good Luck.  If you don't mind me asking, what is Hashimoto's disease?  Never heard of it.