The lupus specialist wants to start me on predisone. If I take predisone but have lymes, would the predisone be potentially toxic?

Is there any symptoms that one will normally expect having with lyme that isn't a symptom of lupus? (besides the bite)

Do you have.. Flu-like symptoms, headaches (mild to severe), recurring low grade fevers
or fevers up to 104.5 degrees, fatigue (mild to extreme), joint pain (with or without
swelling), muscle pain, connective tissue pain, recurring sore throat (sometimes only on one side of the throat), swollen glands (come and go), varying shades of red on ear lobes and pinna, malar rash, cold hands and feet in a warm environment, weakness, lightheadedness, eczema and psoriasis, painful or itching skin, flushing, night or day sweats, inordinate amounts of sweating, anhydrosis (inability to sweat), or dermatitis?

Numbness, sleep disturbances, vertigo, hearing loss, feelings of being off-balance,
unexplained weight gain or loss, panic attacks, anxiety, depression, mild to severe cognitive difficulties, mood swings, coma,
seizures, dementia, mania, biploar disorders, vivid nightmares, stammering speech, confusion, memory loss
(short or long term), "brain fog", vibrating feeling in head, topographical disorientation, and environmental
agnosia, problems with numbers and sequencing, disorganization of thoughts, rambling on in great detail while talking, frequent errors in word selection or pronunciation, changes in personality,
short attention span, Tourette manifestations, OCD (obsessive compulsive disorder), raging emotions, or
cranial nerve palsies?

Some people explain symptoms as feeling apart from everything, feeling unattached,
robot-like, not doing their own thinking, feeling like looking through a veil, feeling
withdrawn, or feeling like they are swaying side to side.

Do you have bladder disfunction (neurogenic bladder with either hesitancy, frequency, loss of bladder awareness, urinary retention, incontinence or symptoms of UTI, and chronic pyelonephritis)? Intersitial cystitis, irregular or severe menstrual cycles with decreased or increased bleeding, early menopause, a new onset of P.M.S. symptoms, or disturbed estrogen and progesterone levels?

Altered pregnancy outcomes, severe symptoms during pregnancy, abdominal bloating,
irritable bowel syndrome, abdominal pain and cramping (may appear to be ulcers), loss of
sex drive, testicular or pelvic pain, breast pain, or fibrocystic breast disease?

Diarrhea (which can come and go or last for months with no explanation), constipation
(which can be severe enough to cause blockage), irritable bowel syndrome, spastic colon, nausea, stomach acid reflux,
gastritis, abdominal myositis, or indigestion?

Do you have a higher occurrence of various types of cysts (liver, breast, bone, ovary, skin, pineal gland and kidney)?

How about conjunctivitis, ocular myalgias, keratitis, episcleritis, optic neuritis, pars
planitis, uveitis, iritis, transient or permanent blindness, iritis, photophobia, temporal arteritis, vitritis, Horner's syndrome, ocular myasthenia gravis, and Argyll-Robertson pupil?

Do you have any of these heart related problems: mitral valve prolapse, irregular heart beat, myocarditis, pericarditis, enlarged heart, inflammation of muscle or membrane, shortness of breath, strokes, or chest pain?

Do you experience twitching of facial muscles, Bell's palsy, tingling of the nose, cheek or face, chest pain or soreness, enlarged spleen, liver function disorders,
tremors, extreme sensitivity to being touched or bumped, burning sensations, stiff neck, meningitis, or encephalitis?

Do you experience continual or recurring infections (sinus, kidney, urinary tract)?

Or do you have... a weakened immune system, the development of new allergies, recurring
upper respiratory tract infections (causing, or worsening of pre-existing sinusitis, asthma, bronchitis, otitis,
mastoiditis), or allergic or chemical hypersensitivity's?

Perhaps you have T.M.J., difficulty swallowing or chewing, tooth grinding, arthritis (in small joints of fingers and larger, weight bearing joints), Osgood-Schlatter's Syndrome (water on the knee), bone pain, gout-like pain in toe, muscle spasms to the point of dislocating joints and tearing muscle tissue, leg and hip pain, "drawing up" of arms,
"growing pains" in children, tendonitis, heel pain, carpal tunnel syndrome,
and paravertebral lumbosacral muscle strain/spasm?

If so.. have you considered Lyme Disease for a diagnosis? It is often confused with Lupus.

Less than 50 percent of Lyme patients recall having the typical "rash" and up to 90
percent of those with Lyme Disease are missed by standard blood work.

When I had the steroids, the symptoms did in fact abate. They did however return with greater intensity a few days later. I used this as a tip off to look a infectious diseases. Lyme was one of about 6 possible.

Here are questions you should be asking your Doctors...

There are specific blood test for Lupis, have you tested positive or probable via one of these test.

There are also tests for Lyme and you might ask the same question, however, the test results are generally accepted as not being as reliable as with lupus

Do you show any of the classical lupus signs.(ie butterfly rash)

Also ask you self, is there a specific pattern to your symptoms, both Lupus and *lyme* (see below) are fluctuating diseases but lyme is know to produce very regularly occuring cycles (ie every 4 weeks is common). Lupus is not so regular.

Do you have any migrating joint involvement. This would be more supportinve of Lyme as compared to Lupus.

As far as Lyme goes, ticks carry a lot of nasty things, Lyme is one of them, HOWEVER, many of the diseases that they carry can mimic Lyme symptoms. In fact one can actually have a mix of a variety of diseases which may include Lyme, this is one of the reasons why lyme is so hard to treat properly.

One thing is for sure, if you have in fact been bitten by a tick, you have already shared your blood with the animal blood supply in your area. This is never good, but may not be a big deal either, it all depends on luck

In the end YOU will have to decide what to do but you could ask to be placed on both steroids and antibiotics at the same time just in case, at least until you finish with the course of steriods.

As far as "HERX" goes, it is slang for jarisch-herxhiemer reaction (herxhiemer is the guy who discovered it but Jarisch noted it first).
You should not use slang with Dr's. they will most likely discount it as "interneticus medicus" and this may diminish what they think of your input to them.

Basically it is more or less defined as a worsening of existing and the addition of new symptoms, which appear in a transient fashion in response to treatment with antibiotics.

This is though to occur when the bacteria are killed and all the dead bodies and fragments cause an inflamatory reaction in your body. Eventually the junk gets cleared up and you fell better.
In fact you feel better than before you started. The patterm various from person to person.

The herxheimer reaction occurs in a number of dieases but is known under different names. I have not heard of it (but that does not mean much)occuring with lupus , it is however fairly common with Lyme. If it does occur it is very important to record the timing of when it occurs relative to the start of the drug regime. This time delay serves as a tool to refine treatment.

About being itchy... no idea (although if you have started a new drug of any type this could be a reaction to it. Such reactions can be very serious so if this is the case you should talk to your doctor as soon as possible)

Thats all I can say. I would suggest you research lupus and it neurological variant ( which is far more rare) in some detail. A good starting point is emedicine.com

Good luck

Oh yes, whats with the home page that you have listed? Are you a listing agent?

here is a good site. It is a site about using antibiotics to reverse autoimmune condtions.

This woman has lupus, and here is her story. She got well going on Minocycline
and a change of diet and so on.

HOWEVER, it does not say she has lyme, dont think she does. I belive that pulsing is not for everyone. She pulsed mino I think?
not sure.

Here is the site, look around and possibly email some.
http://rs.option8.net/story.php

Blood tests won't help you. We have very positive ANA's and my daughter also had positive anti-DNA (supposed to be definitive for lupus) and I also had a positive lupus skin biopsy. My daughter has the rash, and I get sick in the sun.So, we definitely have autoimmune illness resembling lupus.

LLMD's will tell you these lupus labs can result from Lyme. (Actually some positive Lyme tests can also result from lupus, making things even more frustrating). The best LLMD's will encourage you to monitor for the possibility of separate autoimmue illness, if these labs persist after a couple of years of treatment. However, if your autoimmunity is from the Lyme, the lupus labs usually resolve or improve dramatically.

I don't know what your other symptoms are and why steroids are being suggested. We used Plaquenil instead. Both the rheumatologist and the LLMD wanted us on Plaquenil,as it addresses autoimmune activity by calming the immune system and helping with inflammation, and it helps Lyme treatment if you are on Biaxin, Zithromax or tetracyline (it alters the pH in the cellls to help meds get in the cells). Why don't you suggest this to your MD's?

We met with our primary care doc when we had doctors who disagreed, and we agreed w/him that the best course of action in the beginning was to "first do no harm." He agreed w/the LLMD that we should try antiibiotics first, since steroids can harm, with the Plaquenil.

it is also true that autoimmune illnesses sucha s lupus are being treated by some with anitbiotics, on the idea that it is organisms (such as mycoplasma, or perhaps even Lyme) that it causing the problem. This is controversial but helps many.

Being comfortable and patient with mysteries was difficult- this is a frontier of medicine! All I can say is you may not have "either" lupus or Lyme but your illness may actually involve both, and the lupus may be just part of your Lyme. Ask to have your HLA-type tested, this will also give you a clue if you have this tendency toward autoimmunity w/your Lyme.

You will not know for sure for a few years
so our advice would be to avoid any treatment for one thing that will hurt he other, like steroids, at least in the beginning.

Key word Steroid.

Lyme and steroids. http://www.canlyme.com/floridasteroid.html

Huggins' arthritis got so bad that a doctor decided to treat him with steroids. But the steroids affected his immune system, allowing the peripheral neuropathy to develop. Huggins said he was feeling the effects within a month after starting the steroids.

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http://intl-cdli.asm.org/cgi/content/full/8/2/225

The mechanisms of impaired immunity induced by corticosteroid administration are complex and not completely understood. Many cells have intracellular steroid receptors complexed to a heat shock protein, hsp90. Steroids displace hsp90 from the receptor, allowing the receptor to enter the nucleus and bind to the gene regulatory sequences. Corticosteroids have effects on a wide variety of cellular processes and cell types. Thus, the precise steroid effect or combination of effects that to increased spirochetal loads in the corticosteroid-treated NHPs in this study was not determined. However, given previous studies that have demonstrated the importance of anti-B. burgdorferi antibodies in protection from infection, it is likely that the much lower level of specific antibody in the dexamethasone-treated NHPs contributed significantly to the higher spirochetal loads in those animals. Any combination of the lymphoid cells critical to antibody generation (APCs, helper T cells, or B cells) could have been affected.

Got this quote from another site, it spoke volumes to me"

"you're primary responsibility is to yourself not to a doctor who may or may
not be fully equipped to know what is really going on with your body. Never
doubt yourself. Especially if the symptoms are visible to you and others
around you.
"

Answer to Davids last comment. "Oh yes, whats with the home page that you have listed"
I am the owner and this is the only thing that I have the ability to do after 3 car accidents and my worsing symptoms of lyme.

The ironic thing was, it was while we were on a two week home exchange vacation (our home page that David refers ) to the Hudson Valley in New York that I got bit by at least one tick.

I had no symptoms before the accidents 5 years ago, which a leads me to wonder if this is a dormant lyme being activated by a trauma? I have had tick bites in the 1970's and 90's.

Anyone know a documented site that states a trauma can trigger lyme. We had three car accidents, I lost my professional job, my house and my dad passed away in the space of 15 months. That may qualify for trauma!

Can I ask what kind of symtoms you have when out in the sun. I have a lot of problems with the sun as well, have had for several years. If you don't want to post on here you can e-mail me. My addy is up above.

I also have auto-immune problems Rheumy said Lupus like, I have Lyme as well, just curious to know how severe your sun problems are. Thanks Barb