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1225331 tn?1333369369
Lupus Diagnosis without positive ANA?
Hi all, I've been seeing a rheumy - once in April and now again since my orthopaedic doctor sent me back to them thinking that they should investigate more.  My ANA panel, Sed Rate, CRP, myositis panel, etc have all been negative. So...she says that I can't have Lupus, even though she previously had told me that you can have Lupus with a negative tests since the specificity isn't 100% - it's about 95%.

Here are my major symptoms:

Weight Loss (30% of my body weight)
Daily Fevers up to almost 102 degrees for at least the last 6 months
Reactive lymph nodes
Fatigue & general malaise
Malar rash & flushing
Raynaud's
Livedo retricularis
Photosensitivity
Pleurisy
Arthritis
Pain in hips & knees
Cognitive dysfunction
Pharyngeal Dysphagia
Racing heart with palpitations
Weakness in hips, core, pelvic floor, upper legs
Purplish/red rashes on hands/knuckles
Red inflamed burning red ear
IT Band stranding
Fairly rapid vision loss (over months) - corrected vision is 20/50 bilaterally since last eye exam & new glasses just 6 months ago. And at that time he was surprised how much I had deteriorated from the time before.

With all of these symptoms, I know it's autoimmune and so does my neurologist.  Yet, my rheumy says my labs are all normal, so that's it - I don't have anything and they won't see me again.
Please help!  I feel so awful all the time.

Should I try to find a rheumatology center somewhere (I live in Colorado)? What do you think?  My PCP isn't supportive and I'm sure I would probably need some sort of referral to get into one of these places.

Thank you,
Kelly
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12 Answers
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1756321 tn?1377771734
A butterfly facial rash can be caused by a number of conditions such as:

* Discoid lupus erythematosus
* Systemic lupus erythematosus
* Rosacea
* Seborrheic dermatitis
* Dermatomyositis
* Polymorphous light reaction
* Cushing's Disease
* Reaction to medication
* Eryisipelas
* Photosensitivity
* Chemical sensitivity
* Sunburn
* Erythema infectiosum
* Human parvovirus B19 infection
* Lyme's Disease
* Bloom Syndrome
* Sarcoidosis
* Hyperthyroidism

I have a butterfly facial rash when i have hyperthyroid flare ups (i have Hashimoto's thyroiditis).
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1756321 tn?1377771734
I forgot to add two causes:

* Niacin (vitamin B3) deficiency
* Pantothenic acid (vitamin B5) deficiency
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1756321 tn?1377771734
From the list, Lyme Disease is the most suspect for your symptoms. Advanced cases of Lyme cause rapid heart rate. Arthritis is one of the more common symptoms of Lyme disease. Other symptoms of Lyme include swollen lymph nodes, fever, vision loss, photosensitivity, weight loss (in some patients), fatigue, malaise, pleurisy (some lyme patients mention this), muscular pain, livedo reticularis, raynaud's phenomenon, cognitive dysfunction, difficulty swallowing.  

Lyme Disease is a bacterial infection from a tick bite and can mimic diseases such as multiple sclerosis and amyotrophic lateral sclerosis.  IgeneX is a Lyme specialist lab in the US.
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1756321 tn?1377771734
"Symptoms of late disseminated Lyme disease (Stage 3) can occur months or years after the initial infection. The most common symptoms are muscle and joint pain. Other symptoms may include: Abnormal muscle movement, Muscle weakness, Numbness and tingling, Speech problems"
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1225331 tn?1333369369
Thanks for your comments.  However, I'm 100% for sure it's not Lyme.  They've tested me for it and there have been no documented cases of humans contracting Lyme Disease that originated in Colorado. And since I don't go anywhere - it can't be Lyme.
http://www.ext.colostate.edu/pubs/insect/05593.html
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1756321 tn?1377771734
The reported cased of Lyme disease in Colorado (as listed by the CDC) one case in 2003 and two cases in 2008 and one case in 2010.
  
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1225331 tn?1333369369
Yes, they were reported by the CDC in Colorado - however, they didn't ORIGINATE in Colorado.  They were somewhere else when they got it, then it was reported when they were here.  So...since I haven't been anywhere else and it's not contagious, then it's not Lyme.  See what I'm saying?  :-)
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1756321 tn?1377771734
LOL Okay the odds are pretty rare. Hope you find the answer.
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1045086 tn?1332130022
Hey Kelly!  I just happened over to this community looking for some answers of my own and spotted your question.  Have any of these docs considered the possibility of AOSD - Adult Onset Still's Disease in your case?

Your mention of daily high fevers is what caught my eye and made me think of it.  Although I'm not sure the negative CRP and sed rate fit with AOSD, a negative ANA and RA would be key requirements.

Let me know if you want directed toward a website or two with good descriptions of Adult Still's.
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434278 tn?1324709825
Just to throw this out there.  Here is a list of symptoms that go along w/ tick borne illness....note the cat scratch fever symptoms as well.

Lyme:
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

Bartonellosis:
Common symptoms of bartonellosis include:
___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)
___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"
___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature
___Headaches, especially frontal (often confused with sinus) or on top of head
___Eye symptoms including episodes of blurred vision, red eyes, dry eyes
___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)
___Sore throats (recurring)
___Swollen glands, especially neck and under arms
___Anxiety and worry attacks; others perceive as "very anxious"
___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature
___Poor sleep (especially difficulty falling asleep); poor sleep quality
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
_________________

Babesiosis

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___Anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)

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ROCKY MOUNTAIN SPOTTED TICK - I tested positive for this one, but never had the signiture rash.

•Fever
•Rash (occurs 2-5 days after fever, may be absent in some cases; see below)
•Headache
•Nausea
•Vomiting
•Abdominal pain (may mimic appendicitis or other causes of acute abdominal pain)
•Muscle pain
•Lack of appetite
•Conjunctival injection (red eyes)

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Your symptom list is consistent with tick-born illness. I have it myself, and have done extensive research on the subject. I also work in the medical field. Most docs are not familiar with these type of infections and don't think of them when these symptoms present. Testing as recommended by the CDC misses a large number of cases for several reasons. The first being that the body has immune impairment and does not produce sufficient antibodies to detect with the ELISA screening test that is to be done first. So many docs stop there and assume there is no Lyme. If the doc also orders the second level of testing, a Western Blot, this may have positive bands for Lyme, but not enough of them to report to the CDC. However, the presence of some bands, even one, can diagnose Lyme in the presence of the symptoms you mentioned. Another issue is that some labs don't report some of the most diagnostic bands,thereby missing those people who would have likely tested positive otherwise. Then there is the question of the quality of the test kits the lab uses. Some large labs use test kits that are inferior to others. So then a lot of sick people are left thinking they don't have Lyme, when in fact they do. Which leads to another problem. Ticks can transmit numerous other infections.The combination of these and Lyme make people much sicker. These "co-infections" probably wouldn't be investigated, as tick illness is  no longer being considered.
Concerning the incidence of Lyme in Colorado, please don't use CDC reports as a guide, given the testing situation discussed above. There are likely many people in Colorado who have Lyme; undiagnosed,or diagnosed but not meeting the criteria for CDC reporting. Lyme is present in every state in the US,and on every continent except Antarctica.
With tick illness, knowledge is power. Know about these infections and know where to get treatment. The most current, accepted, evidence-based treatment guidelines were posted by an organization of LLMDs (Lyme literate docs) called ILADS. Be sure the physician is experienced with using these guidelines. Many infectious disease docs are not. At the ILADS website a list of their members is available. Another possible source of resources may be a local support group or Lyme organization. Evaluate critically any offered information.
You have some homework to do! Please don't wait. My tick-born infections were not diagnosed for 20 years,despite the input of some otherwise very good physicians. I am now left with multiple organ, bone, vascular, nerve, endocrine, gastrointestinal, cardiac, and brain damage. (It took over an hour and a half to type this  out). I became unable to work 6 years ago.
Do your homework,and get ready. You're about to go down the rabbit hole to Lyme land.
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I forgot to mention that a good lab for tick illness testing is IgeneX in California. This is their specialty. You will have to pay some money, but it is well worth it. Look for Lyme, Bartonella, Babesia, and with those fevers, Ehrlichia. There may also be protozoa such as Protazoa rhuematica, and Rickettsias such as the one that causes Rocky Mountain Spotted Fever. I even tested positive for Typhus. More things are being discovered in ticks. Keep digging.
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