A very warm welcome to the forum!! I'm glad you found us too!
I'm so sorry that you're going through all of this though! I do understand how difficult it can be to be ill yet not LOOK ill...people just don't understand what you're going through!I
definitely understand though...I have 6 autoimmune diseases and severe fibromyalgia, plus at least 4 tick-borne diseases: Lyme, Babesiosis, Ehrlichiosis (HME), and Bartonella. I too developed degenerative disk disease because of a tick-borne illness; the Lyme spirochetes LOVE collagen and have chewed up my spinal disks, causing DDD to accelerate way beyond the normal rate for aging. So I have disks impacting spinal nerves at L3-L4 and L4-L5.
I take Dilaudid 4 mg tablets for the pain, as well as Lyrica + Cymbalta for the fibro.
I too suffer from migraines, hypertension, and very low vitamin levels, plus high viral loads (EBV and CMV). Some of the autoimmune diseases were likely triggered by the Lyme, as was the fibro. I have a TON of neurological symptoms like "brain fog", confusion, memory loss, blurry vision, vertical double vision, vertigo, switching letters and words when I type, trouble with speaking at times (slurring words, even biting my tongue!).
I've been sick for more than 5 years. I used to teach college math....I had to quit that job because I can no longer do arithmetic in my head. And I have 3 degrees in physics!!
How did they determine that you don't have Lyme disease? Did they do a Western Blot? Do you have a copy of the results? Do you know if any
of the bands were positive?
Just wondering.....because if they used the so-called CDC or IDSA criteria for a "positive" Lyme test, it will almost guarantee a negative test result, whether you have Lyme or not! Those criteria are ridiculous and they are NOT supposed to be used for diagnosis!
According to most Lyme experts, if even one or two bands that are Lyme-specific
were positive, you almost certainly have Lyme, particularly with your symptoms! Each different band means a certain type of antibody to a specific protein in the body or the flagellum (tail) of the Lyme spirochete.
Bartonella and other TBI cause a lot of symptoms too.....here is a "short list" of common symptoms for some of the most common tick-borne illnesses:www.anapsid.org/lyme/symptoms/tbi-symptoms.html
Also, here's Christine's great site that talks about
being sick but not LOOKING sick:www.butyoudontlooksick.com/articles/guest-writers/lost-in-the-land-of-the-undiagnosed
You should also read Christine's "Spoon Theory" post, it's wonderful (and I think it will answer your question about
how do we balance our daily chores and try not to overdo):www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino
Even if you don't have Lyme disease, you should also check out the Lyme forum here on Healing Well, most of us on that forum have more than one TBI (tick-borne illness) and we discuss the symptoms of the others as well.
Please feel free to email me privately at any time. Just click on the little envelope on the left-hand panel.....
Take care, you're in my thoughts and prayers!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel
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Post Edited (nasalady) : 12/13/2010 4:49:34 PM (GMT-7)