I have been dealing with a weird illness that started suddenly in July 2008 and I am now starting to wonder if it could be Lyme. I donít recall being bitten by a tick or seeing any type of a rash, but a month before I became ill I spent a lot of time walking through grassy fields. I do remember encountering rabbits covered with engorged ticks.
All of the Lyme stories I have read so far include at least one of the following symptoms that I have never experienced since this began:
Swollen lymph nodes
Stiff or painful neck (it creaks a little more than usual, though)
Stiff or painful joints
Numbness or tingling in arms or legs
Is it possible for Lyme to be present without ever experiencing all of these symptoms? Maybe it is still early Lyme and these are to come?
For those interested here is my full story:
It started in early July with constant mild fatigue and a vague unsettled feeling in my stomach. I basically felt mildly ill all the time, but it was too mild for me to suspect that something was wrong.
A few weeks later I started experiencing episodes of nausea almost everyday and the constant fatigue became more pronounced. I was now starting to stay home sick on a regular basis, which was very unusual for me.
At the end of August things quickly became a lot worse. Since then I have basically experienced a non-stop migraine that alternates between periods of high severity and mild severity. I have not felt ďnormalĒ since then.
The symptoms I experience on a regular basis include:
Fatigue (mild to moderate, occasionally severe)
Feeling mentally dull (usually only mild)
Feeling weak all over (usually only mild, sometimes completely absent)
Unusual sour taste in my mouth
Troubles staying hydrated/retaining water
Headache (often moderate but rarely severe)
Head rushes, lightheadedness, and weird dizzy-like sensations
Spacing out, tunnel vision
Grainy or blurry vision
Troubles concentrating (can barely read anymore)
Feeling like my eyes are bouncing around and going in and out of focus
Hypersensitivity to light and sound (constant)
Ringing in my ears (constant)
Visual disturbances (seeing tiny white flashes of light, floaters, seeing after images)
Muscle twitches in my legs (never anywhere else)
Anxiety (usually only in the early morning)
I started seeing a new doctor in January who specializes in hormone imbalances because I thought it was a severe case of adrenal fatigue. There is a history of hormone problems in my family including adrenal fatigue.
Thankfully this new doctor happens to be Lyme literate and does IGeneX testing. He acknowledged the possibility of Lyme but thinks my problems are being caused by faulty digestion (celiac, leaky gut) and hormones (adrenal fatigue).
At first I agreed but now I am doubtful. Could this be Lyme? My ELISA was negative.
Thank you for sharing your story. Your doubt is well-founded.
First-off, Lyme is a clinical diagnosis.
A negative ELISA means nothing at all.
Even the western blot by Igenex, although considered the best there is to date, falls short.
There are 100 strains of lyme in the U.S. and even the best tests out there are only test for a couple.
Ticks also carry a myriad of other diseases ("co-infections"--mycoplasma, bartonella, babesia, ehrlichiosis to name a few) --
again, for which there is no definitive test.
Rash is only noted in about 30% of lyme patients.
Most do not recall a tick bite.
Why? ticks excrete chemicals that have a numbing effect on the skin--think novacaine--unlike a mosquito bite--we never know they've been there!
- Adrenal fatigue is present in at least 40% of lyme patients
- GI, IBS-like symptoms, celiac disease, leaky gut:
I wonder if your doctor has considered palsy of the gut also?
These are common components of lyme as well as everything else you listed.
Lyme symptoms run the spectrum and no two patients are alike.
However, your symptoms do smack STRONGLY of lyme.
Plus, you have a history of Exposure (walking through tick-laden grass).
Bell's palsy is especially indicative as are other symptoms associated with the cranial nerves---
I have never heard of Celiac disease or adrenal fatigue causing Bell's Palsy. Seems rather illogical.
Hypersensitivity to light and sound, Ringing in ears, Visual disturbances....
I have lyme and share all your symptoms but anxiety. I know other lyme px however who suffer from that.
I have not had any notable fever (more common with babesia actually) --
actually my body temperature is very low--
and have only had minimal joint pain but only after starting treatment (from the herxeimer reaction).
As I stated, hormone issues are common in lyme.
Adrenal fatigue but thyroid disease as well.
I have both adrenal fatigue and Hashimoto's.
Your adrenal doc or endocrinologist may be lyme-friendly (as evidenced by knowledge of Igenex lab) but with your exposure and symptoms, I would strongly suggest seeking another opinion from an ILADS lyme doctor to rule lyme out or in.
My sister presented with adrenal fatigue and symptoms of celiac disease a decade ago.The doctors missed the lyme.
10 years later, she was diagnosed with lyme but unfortunately is now disabled.
Please go with your gut, although leaky, and seek out an informed specialist.
When your lab results come back from Igenex get the full copy of it from your doctor. There are several different tests that Igenex offer, I have called them several times to order the test myself becuase there are no LLMDs here in the country I am now living, so its important that your doctor does order further testing that can confirm the Lyme and the other co-infections which their is about 4 currently.
Have the doctor interpret the lab tests, yet post the results of the testing you had done. I can now decipher the Igenex testing lab results pretty well.
I agree with the other posters and too have shared the same symptoms, and also reinterate that the Elisa is a waste of a test, as well as lyme being a clinical diagnosis, if you thumb through my many posts on here you will understand the battle you go through trying to live by test results alone with lyme disease, and only upon my positive spinal tap years later, and after years of suffering was I treated appropriately.
Get further testing and co infection testing done through igenix, skip the run around elisa test, and if this doctor is not willing to go further with this for you then I too agree to find another LLMD doctor to treat you appropriately.
Ingenex has what is called the PCR testing for Lyme and for the co-infections, I agree that the Western blot and Elisa both are kind of hit and miss, so what I was told by the Dr. was that if the PCR portion comes up positive then they are willing to treat me since the Doctors here are very conservative and Lyme is virtually unheard of in this part of the planet.
My PCR came up positive and I have pretty much all the symptoms that Bcnh has. I am waiting for my LLMD appointment to see him. Hopefully I can reverse majority of these symptoms before its to late. My appointment is in 2 weeks.
if your pcr comes back positive, medically speaking a doctor cannot refute it and say its a false-positive so you are set in receiving treatment.
The pcr testing checks for the dna existence of lyme, co-infections and for viral strains such as HIV so this is the most accurate testing before sending it out to the CDC (center for disease control) to have the DNA inspected for variants in diseases and conditions.