stiff, swollen and painful joints; fatigue; evening hive-like rash

[anadia]

My 16yr old daughter has been having a lot swelling and pain in her ankles, fingers and wrists. There is a lot of arthritis and lupus in my family-and I think she may be getting one of those conditions...but her blood work has all been normal. Most evenings she also develops hives on her back and arms. I've taken her to ER, but we still don't know what's causing these ods symtoms. She has asthma and celiac (gluton intolerance)

[jengillespie]

It should also be noted that Lyme bacteria is transmitable to the fetus during gestation.  I have Lyme and both of my children have Lyme.  I was unaware that I had it until after my second child.  Most doctors are not experienced in reading Lyme tests (Western Blot) and will dismiss Lyme as being the culprit unless there is a positive IgM which is the blood measurement band for the body's immediate autoimmune response to a Lyme infection. The problem is that if you don't remember being bitten, or you could have had symptoms that you dismissed as a common flu perhaps months ago, then some doctors can say that there is no evidence to support a Lyme infection.  Latent diagnoses are often misdiagnosed as fibromyalgia, MS, Lupis, Parkinsons, etc.  Some doctors will see a positive IgG banding but insufficient IgM and will dismiss the Lyme diagnosis.  The fact is, that you cannot have a positive presence of an antibody unless you have been exposed to the infection.  For more information, see http://www.cdc.gov/lyme/diagnosistreatment/LabTest/TwoStep/WesternBlot.  My recommendation would be to try to find a Lyme literate doctor is not afraid to treat.  See www.ilads.org to find a trained Lyme literate doctor in your area.  My family went through hell, but we're all better thanks to Dr. Dan Cameron's team in Mt. Kisco, NY.

[karajo]

So sorry to hear about your daughter having troubles.  It's so hard to see your kids going through things.

Adam wrote a very well thought out response.  


The only thing I would add is a list of symtpoms for both lupus and lymes.  Really, her symtpoms sound more lymes than lupus to me, but that doesn't mean she doesn't have both.  Sometimes very serious illnesses can trigger autoimmune responses.

Lymes Symptoms

GENERAL: fatigue, headaches, fevers, muscle aches/pain

BRAIN: weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities, severe headaches, stiff neck, meningitis, cranial nerve involvement (eg. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; chang in hearing; deviation of eyeball, drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decresed concentration, problems w/ numbers) and behavioral changes (depression, personality changes).

Other psychiatric manifestations have been reported including: panic attacks, disorientation, hallucinations, extreme agitation, impulsive violence, manic or obsessive behavior, paranoia, schiziphrenic-like states, dementia, and eating disorders. Some patients have committed suicide.

EYES: vision changes (including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before eyes, inflammation of various parts of the eye, pain, double vision.

SKIN: rash not at the bite site - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discorored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crsty/oozy).  The rash may develop a bull's-eye rash or target look. The shape may be circular, oval, triangular or a long-thin ragged line.

Other skin problems include: lymphocytoma (a benign nodule or tumor) and acrodermatitis chronica atrophicans (a discoloration/degeneration usually of the hands or feet).

HEART AND BLOOD VESSELS: Irregular beats, heart block, myocarditis, chest pain, vasculitis.

JOINTS: pain (intermittent or chronic, usually not symmetrical), sometimes w/ swelling, TMJ-like pain in jaw.

LIVER: mild liver function abnormalities

LUNGS: difficulty breathing, pneumonia

MUSCLE: pain, inflammation, cramps, loss of tone

STOMACH AND INTESTINES: nausea, vomiting, diarrhea, loss of appetite, anorexia

SPLEEN: tenderness, enlargement

PREGNANCY: miscarriage, premature birth, stillbirth, and neonatal deaths (rare).  


Rocky Mountain Spotted Fever:
all of the above except no stiff neck, no erythema migrains, and no leukopenia.



There are 11 criteria for a lupus dx.  You must have at least 4 of the 11 to recieve a dx.

They are:
1. malar rash over cheeks (butterfly rash)
2. discoid rash, red raised patches
3. photosensitivity - reaction to sunlight, resulting in skin rash
4. oral and nose ulcers
5. arthritis
6. serositis - inflamation of the lining of the lung or heart
7. reanl disorder - excessive protein in urine and/or cellular casts
8. neurologic disorder - seizures, or psychosis
9. anemia or low white blood count or lymphopenia or low platelet count
10. positive ANA
11. positive anti-DNA or anti-Sm, or antiphospholipid antibody or false pos. syphilis test

Other symptoms are:
fever
abdominal pain
chest pain
shortness of breath
blood in urine
hair falling out
fatigue
muscle pain and weakness
dizziness
poor memory
headaches
poor circulation in fingers and toes
tingling in extremities
diarrhea
bloating
nausea
weight loss
blurred vision
depression
palpitations
raynauds (where fingers turn white when cold)
intollerance to cold
sore throat
...to name a few


I'm praying for your little girl
~Kara

[AdamV]

   I just noticed the fatigue in your topic heading. Fatigue is common with Lupus and Lyme. I also just noticed you said the hives come in the evening. Some people with lupus are sensitive to the sunlight (discoid lupus) and sometimes develope rash or hives after being exposed, though I don't know about the way rashes develope on persons with Lyme. I've not researched Lyme disease as well as I should but something to think on!

[AdamV]

   I have done a lot of research about Lupus, Lyme and other autoimmune diseases. The local Health Dept. ran bloodwork on me for arthritis, came back with positive abnormal ANA (antinuclear antibody) test. They were convinced that ruling out some types of arthritis, pos ANA, and my history of problems going back to my teen years that I have SLE (systemic lupus erythematosis). The reason I've studied up on this is because I really don't fit the category. Usually Lupus is more common in women than men, especially black women. I'm a white male. If you suspect Lupus and it runs in your family, they have a DNA specific test, I think it is called an Anti-DsDNA test (antibodies found in double stranded DNA). Don't foget the ANA test too. There are a bunch of different tests to either clarify that it's Lupus, or rule out other stuff.
   That being said, I have two friends that DO have Lyme disease (from deertick bites). They both have painful swollen joints. One gets the type of rashes you're speaking of (not butterfly rash on face, as common w/Lupus). As you say, a hive instead of rash, looks almost like poison sumac hives about the size of a nickel. I don't know what test they do for diagnosing this though.
   However, I do have Osteoarthritis and it is known to begin being noticed first in the fingers, wrists, ankles and anywhere there are small joints or bones. Usually can be seen in x-rays if memory serves me right.
   Don't rule out Lupus or Rhumatoid Arthritis though. The ANA test doesn't always have to be positive to still have Lupus but it's another step toward diagnosis to have it done, if you haven't already. They do say that 95% of Lupus patients will have a positive ANA though. Lupus is 10X more likely in women, she's also the right age to show signs. It could very well just be OA though.
   I hope this helps in some way, and hope the best for your daughter! Get well soon!