Lupus and Lyme

[weslibgirl]

It seems I received a double whammy. I have suffered for too many years with joint pain, fatigue, edema andf other symptoms. I had Rheumatic Fever when I was 15.  I am now 58. Over the years, I have been to a cardiologist and discovered that I have High BP and a minor backwash in a heart valve. At one time I was told that my edema was idiopathic.  My new MD finally tested me for Lupus and Lyme.  Guess what. Both screens came back positive.  This was 15 months aqo.  Several tests later and I am still positive.  My rheumy has added some meds to aid the depression and make the pain more bearable besides the placquinel and predinsone..  

My problem, is after all of this time, I wonder how long have I had either condition. Also how can I attribute which symptoms to which condition.  

[LBCgirl]

This thread is 11 years old... but for anyone coming here to find answers please know that autoimmune disorders (MS, ALS, Parkinson's, Lupus, RA, Fibromyalgia, etc.) are rooted in INFECTION!!! Lyme Disease is going to be the primary culprit, but there are others. Your body doesn't just randomly attack itself despite what your conventional doctor has told you. Still today, 99% of the time, the only way to get proper diagnosis and treatment is via an LLMD (Lyme Literate Medical Doctor.) Go to ILADS.org, register for free and do a provider search in your area. Whatever you have to pay... it's WORTH IT!!!

[Sara_MHModerator]

Thank you for your comment.  To the best of our knowledge, the origin of autoimmune disorders is unknown.

[Browngenius45]

I was doing some yard work in Danbury CT, in the summer of 2009 and aftee I was done my hands were swollen I started to fell horrible, I dealt with the pain for at least a week. I then went to the ER, where they treated me for Lyme and gave me prednisone, When I took the meds they perscribed for my lyme it began to get a big knot on my forhead which showed I had some reaction to the medication. I was then sent to a rheumatologist and she diagnosed me with luis, I didn't like how she just looked at my age race and ethnicity and diagnosed me with lupus I had been healthy up until that day I always had my yearly physicals and I was not will to accept her diagnosis so I discontinued the lyme medication immediately So it has been 4 years plus since the diagnosis, I am now experiencing lyme athritis in my shoulders, hands and wrist, my knees ankles and neck, this can go on for weeks at a time. The pain pretty much comes on in the evenings when the weather changes i am totally feeling like CRAp. I recently had to take anti biotics for a vaginal bacteria and vaginal cyst, Upon taking the Flagyl I started to feel a relief from the pain that I had become usedto experiecing every evening. I do beleive I have an undiagnosed case of lyme because of the onset after doing yard work in Danbury CT a prime location for lyme disease. I am just a little afraid that I have had it for so long there may be some perminant damage to my joints because the doctors have been so negligent in diagnosing my disease. I also had an elevated ESL and ANA which they attributed to lupus.
I hope that my stroy will help someone who is confused as I was, I am going to my doctor on Monday to make him start me on treatment for lyme disease. Just as my hunch they have tried every thing else so now lest try something I say!!!!!!NMRK  

[cookiegirl707]

What great news!  But it doesn't surprise me, as God is THE greatest physician!  Faith is a wonderful thing.  Thanks for sharing your wonderful news.

Mari

[karajo]

Praying for you as I know God wants to heal us.  Just recently I had a CT done and the hydronephrosis in my kidneys were gone.  After 2 years of watching them to see if they got any worse.  I know God did it!  There wasn't any other explaination.  I'm so excited.

I'm glad your dr. is keeping an eye on your liver.  That's good tohear.

Trusting God for you and for me.

Those that trust in the Lord shall not be disappointed.

Kara

[cookiegirl707]

I agree with you about the Tylenol.  I get acetamenaphin(SP?) blood tests by my doc because I take so much, and have been for a long while.  So far, so good, but I know I'm pressing my luck.  I've tried cutting back (to 9)...I was taking more than that, but the pain is so great and anything less is just intolerable.  I have ulcers, so taking ibuprofen is prohibited.  Thank goodness, I rely solely on my faith, or I'd already be buried.  I think the only thing keeping me alive is my trust in the Lord.  I don't know any other explanation as to why I haven't already ruined my liver, other than the good Lord knows I wouldn't be able to survive without my Tylenol!haha  Thanks for caring.  I definitely know I'm living on borrowed time, but I'm praying that God will one day lead me to the right doc who will put me on the right meds to help me.  I don't think they've figured out everything yet, neither does my current neurologist.  He's trying to find me a big facility to go to...maybe Johns Hopkins.  Mayo in Minnesota already turned me down saying there was nothing they could do, so he's hoping Johns Hopkins will run antibody tests that we don't have capabilities of doing here in FL.  We shall see.  Thanks so much for your support.

[karajo]

Hey girls, yes, depression is a definite symptom of lupus.  I can be doing great emotionally and have a flare and boom, I'm so depressed and don't really know why.  Even if I tell myself it is just a flare and it won't last.  

The greatest thing about MedHelp is we can be there for each other, ask each other questions and feel like we are not alone.  

We have all been right where you are and found support in this forum.  Two things that really helped beside plaquinel are vit D supplements (presciption strength) and vit B12 shots.  Wow, talk about cranking my tractor.  

Be sure and wear your sunblock and try really hard to stay out ofthe sun.  It causes an inflamatory response inside your body.

Cookie, just so you know how much tylenol is safe, here is an article that keeps our families from having to plan our funeral anytime soon. (I have a dear friend who dealt w/ chronic pain and died of an acediminiphen overdose)

http://www.medicinenet.com/tylenol_liver_damage/page2.htm
For the average healthy adult, the recommended maximum dose of acetaminophen over a 24 hour period is four grams (4000 mg) or eight extra-strength pills. (Each extra-strength pill contains 500 mg and each regular strength pill contains 325 mg.) A person who drinks more than two alcoholic beverages per day, however, should not take more than two grams of acetaminophen over 24 hours

You might could cut back on the tylenol and add ibuprophen from time to time.  Maybe one ibuprophen and one tylenol combined.  Ask your dr. or pharmasyst.

These things that we go through can cause us to press into God and strengthen our faith in Him.  I personally am trusting God for great and mighty things, but in the journey, I'm learning more and more about Him.

God bless you girls, Kara

[cookiegirl707]

Most of the people in my local Lupus support group are on antidepressants.  I'm on Cymbalta for pain control as well as for depression.  I don't think I'd be depressed if I didn't have all this nasty stuff wrong with me, or if I could find a doc, any doc, who could help me.  I also have dizziness/vertigo that no one can figure out, and I take Meclizine when it gets too bad to function.  Has anyone told you you might also have fibromyalgia?  My rheumatologist told me I have that too and that is what was making my fatigue, joint, and body pain worse.  Not to mention that I am allergic or sensitive most every pain med on the market.  So between the Cymbalta and Extra Strength Tylenol...(9 ES Tylenol a day), I can get the through the day, sort of.

I definitely feel for you and wish I could give you more hope.  Maybe someone else out there has some hope for both of us!  That would be awesome, wouldn't it?  Until then, keep your faith, because at some point, it's got to get better.  At least that's what I keep telling myself. Especially when I'm the most frustrated.  

[weslibgirl]

Thank you for your comments.  

I am still having a positive ANA and my platlet count is low.  I have Malar rash, arthritis and pleuritis.  What bothers me the most is the fatigue and joint and body pain.  This is what limits me the most.  And I have most of the long list at one time or another.  

It has gotten to the point where I am not sure if the dizziness is due to Lupus or a side effect from the meds to help control the Lupus.  Is my depression part of Lupus or from the meds or is it because I am so frustrated with this whole situation?  Frustration is a mild term for what I feel.  

[karajo]

Hey girl, I would encourage you to look up PlatletGal. She is much more knowledgable about Lymes than I.  She might could even give you some info on what to do if you think you've had lyme for an extended period of time.  I understand that it will eventually cause nerve damage that is irreversible.

[cookiegirl707]

I, too, have lupus (since 2006) and many of the symptoms that Karajo posted for Lymes.  What caught me were the neurological symptoms, because my latest EEG (brain wave test) came back abnormal, as that of a person who is 70-80, and I'm only 48!  I pretty much have every symptom Karajo noted on Lyme in every category!  But no doc I've been to here in FL believes I have it.

I was bitten by something in 1998 and had the bullseye rash on my arm and was quite ill at the time.  The bite turned into cellulitis.  It took 3 courses of antibiotics to make me better and then at the site of the bite, a cyst developed, so I had to have it surgically removed.  I've never been the same since.  I was hospitalized in 2005 after years of UTIs because this particular UTI was a different bacteria and had to go on 16 days of IV antibiotics.  It wiped out the infection, and I've had no more UTIs since.  But, the funny thing, while I was on the IV antibiotics and for a total of one month, I was symptom free of all my pain...joint pain, muscle pain, headaches, everything!  No one had ever tested me for Lyme until 2006, and I've always come up negative for it (just the standard blood tests they do).

I was just wondering if you had more than the standard blood tests for Lyme or did they do anything more to determine you had Lyme.  I think in late stage Lyme it can settle into your muscle fiber and they have to do muscle biopsies.  

I also have other autoimmune illnesses and fibromyalgia, so I understand how you feel about not knowing what symptom to attribute to which affliction.  Sometimes, you just don't know and there is no answer.  Mostly though, you just treat the symptom, cuz that's all the docs know how to do, at least that's how it's gone in my case.  

I hope you find your answers.  I'll be thinking of you, and to Karajo, thanks so much for your knowledge on Lyme.  WOW, I had no idea all those symptoms were caused by Lyme.  I wish I could get someone to just think outside the box with my symptoms.

[karajo]

WELCOME TO MEDHELP LUPUS FORUM!

Some of the symptoms of lupus and lyme are similar in many ways.  One thing to note about lupus is, it "can" affect every area of your whole entire body.  I will also note that I found on the internet where one can have a "false positive" lyme test in lupus.  So, it's possible that you don't have both.  

Here are the symptoms of lymes:

LYMES

GENERAL
Profound fatigue, severe headache, fever(s), severe muscle aches/pain.

BRAIN
Nerve conduction defects (weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities - peripheral neuropathy), severe headaches, stiff neck, meningitis, cranial nerve involvement (e.g. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness or vocal cord problems; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; change in hearing; deviation of eyeball [wandering or lazy eye], drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decreased concentration, problems with numbers) and, behavioral changes (depression, personality changes).

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 (EM) - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). The rash may develop a bull's-eye rash or target look. The shape my be circular, oval, triangular, or a long-thin ragged line.

lymphocytoma, which is a benign nodule or tumor, and
acrodermatitis chronica atrophicans (ACA) which is 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 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.
(nausea, diarrhea, loss of appetite, but with NO weight loss! Now how crazy is that?!)

SPLEEN
Tenderness, enlargement.

PREGNANCY
Miscarriage, premature birth, stillbirth, and neonatal deaths (rare). Congenital LD has been described in medical literature.


LABS
leukopenia (low WBC), thrombocytopenia (low platelet ?),elevated AST, elevated ALT & anemia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

LUPUS SYMPTOMS:
malar rash
discoid rash
oral and/or nose ulcers
arthritis
pleuritis or pericarditis
protein in urine and/or cellular casts in urine
seizures and/or psychosis
anemia or leukopenia, or lymphopenia, or thrombocytopenia
positive ANA
positive anti dx DNA, anti-Sm, antiphospholipid antibody
THESE ARE THE 11 CRITERIA FOR LUPUS.  ONE MUST HAVE 4 OF THESE FOR A DX.

Along with these, you "can" have some of these:
hair falling out
fatigue
tachycardia
diarrhea
depression
headaches
fever
muscle pain
muscle weakness
stiffness
dizziness
insomnia
poor memory
tingling in extremeties
bladder spasms
abdominal pain
eye pain
eye scratchiness
blurred vision
swollen lymph nodes
sore throat
anxiety
palpatations
leg cramps
raynaud's
sensitive to cold
confusion
chest pain
hearing problems

This is probably not an exhaustive list, but it can get you started.  Hope I didn't overwhelm you.

How long have you been on the medicine?  Are you feeling better?  I know how frustrated you are to think of how long you suffered.  But at least you can move forward from here.  

Praying for you.
Kara