Need advice please...

I need some advice.  I've recently been diagnosed with lyme disease (via sx, and POS igenex WB, and very low CD57).  All my symptoms fit lyme, but there are a few things bothering me that seem more like Lupus.  I've been getting sores (blister like), a sore swollen tongue, and nose sores.  I know these are a symptom of lupus.  My other symptoms include dizziness, fatigue, weakness, brain fog, joint pain, muscle pain, sore neck and shoulders, eye pain, ear pain,burning sensations in feet and legs, etc...

I've seen a Rheum who tested me for autoimmune diseases and tests came back normal (however they tested me early when symptoms were minimal).  I believe my GP ran tests as well that were Neg for lupus.  I've also been tested for thyroid, MS, and Vit def.  Everything is normal.  The only tests that have been abnormal are the lyme test.  I've been treating for 2.5 months and am still feeling like ****.  Makes me worried that I'm treating the wrong thing.

My symptoms fit lupus, but with NEG testing my drs say no.  

Is it possible to have Lupus and have normal testing?  Should I be retested??

What are the general tests ran for Lupus?  

Thanks for your help.

I have no sensitivity to the sun or heat (I actually feel better in the sun and heat).  

[skarey]

I forgot to mention I get a recurring itchy rash on my belly that comes and goes. Also I started having symptoms in May 07 and was sick for several months.  Then 18 months later started having symptoms again, but more severe this time.  I've currently been sick again for 6 months.  

Thanks.

[karajo]

Sometimes when we go through a major illness (like lymes) a secondary issue comes up, such as fibromyalgia.  Some of your symptoms sound like that.  Other things besides lupus can cause mouth and nose sores.  

I'm going to refresh myself w/ the lymes symptoms so I can help you better.  Feel free to add or take away as I am not personally familiar w/ lymes.

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

BRAIN: weakness/paralysis of limbs, loss of relexes, 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).  


OK, with all that said, I'm thinking the rash doesn't stay around w/ lymes.  Am I correct?  So the dizziness, etc can be attributed to the lymes and it can be attributed to fibromyalgia as well.  Has anyone checked you for fibro?  One of the important things w/ fibro is getting enough sleep.  So whatever you have to do to get enough sleep.  Another important question is, how long did you have lymes before being dx?  The longer you have the illness, the more irreparable nerve damage is done.  Some others on this forum might could answer that part better.  You could ask PlatletGal that question or the lymes forum.  Another illness (kin to fibro) can develope as a result of lymes and that is chronic fatigue.  

I hope I helped out.  
Let me know what you think
Praying for you, Kara