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Ceya 09-24-2002 01:36 PM

Lupus vs. Lyme
I have recently joined the message board and as I have read different catagories, I wonder what I have. I was first diagnosis with the parvo virus, now after a year the doctor seems to think it is lupus. He has been treating the symtoms and now I have an added lupus med.
I have alot of these symtoms. Has anyone else had this, should I request a test for lyme or should it been noticed by the doctor? I live in SC I know we have deer. My father and brother hunt. any advice would be appreciated.

jane7178 09-26-2002 07:09 AM

Hi Ceya,
Lupus was also mentioned to me before I got the Lyme diagnosis. I would be interested in knowing the symptoms when you first became ill, and what they are now. I have had Lyme disease for almost eleven years because I was not diagnosed soon enough. If I can be of any help to you, please let me know.

Ceya 09-26-2002 08:08 AM

Hi Jane
Thanks for you reply. Last Nov. I got flu like symptoms, I was extremly tired I could not make a whole day of work. I got a fever 104 one night, My joints in hands elbows, knees became swollen I inched all over and had a lacy rash on my legs. The doctor told me it was viral. after two weeks, he referred me to a rhem.
He ran blood work because he thought I had the parvo virus, which the results showed that I did. He thought I would be better in a year. I was treated with celebrex and later changed to bextra. He also gave me transadone to help me sleep so that I did not wake up aching all the time. Now that I am coming up on the year he has prescribed a lupus med. I still have ichy hands, and scalp. Stiff joints ect. I have had stomach aches and cramps, in June gynocologist removed one overy and uterus, the gastrologist did not find anything so he decided to I have irratable bowel syndom. The rhem. says that I am functional. I have some sort of conective tissue problems.
I know when I was growing up I would get a tick hear and there but I can't think of anything recently.
How about you? How did yours start and how did you find out? You know I feel like every day including memory problems that I notice something new, but never shore If these symtoms are part of my illness or not.
Thanks again for writing to me.

ticker 09-26-2002 09:41 AM

Ceya, when Lyme Disease is a possibility, it is very important to see a knowledgeable doctor. I suggest seeing if your doctor will test you using IgeneX Lab in Palo Alto, CA. They are one of the best for Lyme testing. I also suggest reading the post on this forum entitled "Lyme Disease Information," it may be helpful.

Ceya 09-27-2002 06:49 AM

Hi Ticker thank you for your response. I have read alot of good comments about you.
I will go to that sight, I have been meaning to ask my Rhem.about a test of possibilty of lymes.

lojakaar 10-17-2002 02:24 AM

Hello Ceya,
I'm curious as to whether or not you following up with "ticker's" advice on Igenix for Lyme testing...If you're still looking for answers I have LOTS of them. I am still in the L-O-N-G process of treatment therapy for chronic Lyme Disease and have had NUMEROUS symptoms in the past 30 years - yes, 30 years. The last 10 have been bad - the last two years TORTURE. I tested negative for Lyme too many times to recall, however with the help of kind friends and, finally a wonderful doctor who specializes in Lyme I am at last beginning to feel better and think clearer - much clearer. My symptoms bordered around Lupus, ALS, Parkinson's and others. I have put an ENORMOUS amount of research time into this cause and would be happy to help you in any way I can....

Ceya 10-21-2002 01:08 PM

Hi everyone
I did not follow up on the test. My rhem. has added plaquenil to my meds. I requested an MRI due to my eye doctor stating that my vision problems my be ms.
This weekend I got like a small stomach like virus, sense then I have had nausea, extreme weekness in my arms and legs. Numb in my hands, like when they are asleep. I feel really really bad. I thought I was getting better. My joints are not swelling anymore, but new stuff keeps popping up. I feel like I have the flu, But this is what we thought when I first got sick.
Could I have gotten lyme and not remember a tick bite?
I am going to ask my doctor about lyme. I should get my results of the mri soon. But you know I am scared that soon my doctors are just going to get tired of me.
In the past year I have a rhem. and a hystorectomy, gastology test, now an MRI, my ana test was borderine, I did have a high elevation for the parvo b 19 virus, but I can't find a whole lot of information on it. I am sorry for talking so much, but I really do feel bad today. I have 5 children, a job and my husband is soon going to have back surgery again due to a car accident.
I try and stay strong, I try and keep my sickness, fears and pain to a minimal. But I do want to know what is wrong with me. Thanks for listening please over look spelling, sometimes hard to think.

johnnyzwife 11-06-2004 04:58 PM

Re: Lupus vs. Lyme
Hi . I am also interested in the differences between Lupus & Lyme . I was recently bit by what everyone belives to have been a brown recluse spider , however since I did not see what bit me I was tested for Lyme . The test came back abnormal and I know that you can have an abnormal Lyme test if you have Lupus . I am thinking that I might have Lupus as I have had many problems over the years that could be Lupus . My grandfather died from Lupus and I have wondered for a few years now if I also have it . Does any one know how they distinguish the two ???

ncgirl88 11-06-2004 09:18 PM

Re: Lupus vs. Lyme

Please, please, please go see a LLMD (lyme literate M.D.) as Ticker suggested. Take it from me - I saw over 15 doctors - gastro, neurologist, eye doctor, cardiologist, infectious disease (John's Hopkins), the list goes on forever...however in 5 seconds my Mom's veterinarian took one look at me and said I had it...interesting...he has lots of friends who are vets that have it though so he knows the look.

I was tested 3 times through conventional labs. The 2nd time was through and excellent infectious disease doc at Johns Hopkins however even though he ordered all the tests for coinfections and the all came back negative. I finally went to a LLMD and they tested through IgeneX labs in CA and I was positive for Lyme, Babesiosis, and Ehrlichiosis. Thank God I found this doctor...or more accurately Thank Ticker and Everyone Else here ;) ...anyway having this knowledge means that I can get the right treatment which consists of an antimalarial for the Babesiosis and antibiotics for the other two infections.

All your symptoms point to Lyme and/or tick borne coinfections. The fact that every day pain migrates and systems change. There are ticks in South Carolina that transmit this and don't let anyone tell you differently. I am starting to think that the only reason that everyone thinks the Northeast is the hotbed is because that is where there has been more proper diagnosis, education of tick borne illness, and awareness. I would be willing to bet we are not that far behind in the South it is just not getting reported or diagnosed. This year in North Carolina cases were up 30% which probably means more like a 50% increase.

I can identify with all of the symptoms you listed except for the high fever. I was one of the ones who's temperature drops instead along with blood pressure. My limbs would fall asleep at night and I would wake up with pins and needles even though I wasn't sleeping the wrong way on my arm.

I don't remember a tick bite nor did I have a bulls eye rash or any rash until it all the symptoms became very pronounced. I suspect I have had this at least a year and a half.

So please find a Lyme specialist and get an appointment asap.

Take care,

Komondor 11-07-2004 10:56 AM

Re: Lupus vs. Lyme
You have gotten great advice from the others and I hope you persue lyme disease and other tick borne diseases. You really need to see an LLMD asap.

Lupus can be misdiagnosed as lyme. It is one of the diseases listed for being misdiagnosed in "Lyme Disease - The Basics" which is the information my doctor gives to his patients.

Also, from what I have read a brown recluse spider hurts when it bites you. Although so do some ticks as I can vouch or that... but that is rare as most of the time you never feel a tick bite.

Some ticks are so small you never see them and it is true some are no larger than the period at the end of this sentence. After I was diagnosed with lyme, babesia and bartonella, my husband with lyme and all of our dogs with lyme and one with bartonella henselae - I became paranoid and inspected every speck I saw.

One morning I was making the bed and there was a tiny, tiny fleck on the sheets so I moved in for a closer look and it was a fricking tick. God knows how many little ones I missed over the years. Our cat used to sleep with us but now she is totally outdoors which was not my choice but hers as I would have preferred her to stay indoors. We could not have it both way due to the situation... For every tick you see you can bet there are there are smaller ones lurking around...

Have you done a search on lyme and lupus? I highly recommend you see a knowledable LLMD and get proper testing. What state do you live in?

TickedOffGaLina 11-07-2004 12:26 PM

Re: Lupus vs. Lyme
I also live in SC, and yes tick borne diseases are here! 2 of my dogs were diagnosed with erlichiosis and I myself have been diagnosed with Lyme disease and poorly treated for it. Each of my dogs had 3 wks of doxy 400 mg x2 day ...I was given 20 days doxy 100 mg 2 times a day, tested a 2nd time ...with the antibiotics still in my system (I have read that you could get a false negative if tested with the the doxy still in your systerm) .. and the 2nd test came back "very little change" and my results were "off the chart high" whatever that means. And my doctor stood there and told me to my face that I had probably had enough antibiotics to take care of it, after I told him a whole myriad of symptoms I was experiencing. How in the world a dr can stand there and behave as if this were in your mind when he has test results right there in his hand, is beyond my comprehension.

For a while things seemed better but every 4 wks , ususally on a thursday, I get hit hard with symptoms lasting about 1-2 wks, get a short break then it starts over again. I take supplements that have helped immensely with the chronic fatigue, but I know the lyme is there, I feel a "war" going on in my system, and it seems so out of control.

The medical profession needs to get over their egos, (as well as insurance companies that think they are dr/Gods) and start treating patients as living breathing feeling intelligent people.

I hope you get properly diagnosed and treated soon. Hang in there, and know that you are not alone in your suffering.

ncgirl88 11-07-2004 02:09 PM

Re: Lupus vs. Lyme
Hi TickedoffGalina -

Sorry that you are having to experience the Ignorance so present in the medical community in regards to tick borne illness. It is disheartening at times.

How far are you from Huntersville, NC? It is near Charlotte, NC...I have been seeing Dr. J's clinic and they understand lyme and the coinfections better than any practice I have seen. Ticker here on the board hooked me up with Dr. J's clinic as well as my veterinarian here in Raleigh...


TickedOffGaLina 11-07-2004 10:19 PM

Re: Lupus vs. Lyme
The best I can determine Huntersville is about a 4-5 hour drive from me. Which pretty much means I would have to take time off from work to go there. I have read about Dr. J's clinic (if it's the same Dr.J) and it seems impressive and expensive and my insurance co isn't exactly the greatest, though its one listed as accepted there. It's depressing, but I don't know how or when I can get there. Why oh why can't our "regular" doctors wise up to Lyme disease and try to take more care with our health than with golf games and perks from the sales people from the drug companies?!!!

ticker 11-08-2004 06:26 AM

Re: Lupus vs. Lyme
TickedOffGaLina, I really hope you will consider seeing the Lyme doctor in Charlotte. You deserve to feel better. You have not received proper treatment.

It is a crime that the majority of the medical community is clueless to the seriousness and prevalence of tickborne illnessess. Although the number of knowledgeable doctors are few and far between, thank God for them. Can you make an appointment and talk to your boss about your situation?

ncgirl88 11-08-2004 08:26 AM

Re: Lupus vs. Lyme
Hi TickedOffGaLina -

I think the day off from work you would need to take off would far out weigh the exhaustion that you feel on a day to day basis and the fatigue that is probably affecting your productivity...not to mention your health and the future of your health.

If your insurance company is one that Dr. J participates with then it shouldn't cost as much as you think. For me it has been a lot less expensive than a lot of the doctors I had seen. My insurance company is trying to get out of paying for i.v. antibiotics but that story is far from over.

There is a hotel right next door to the doctors office so maybe you could schedule your appointment so that you plan on driving up or back on a weekend day so that you won't exhaust yourself.

Take care,

dancergirl587 11-08-2004 06:58 PM

Re: Lupus vs. Lyme
TickedOffGaLina, I'm also in SC, I'm going to have to drive 3 hours or so to get to Dr. J's clinic in NC. I also have reservations at one of the hotels near the clinic, within walking distance. I think that when your health is concerned you have to do what you have to do, unfortunately a lot of docs aren't doing their part. Im also missing work. Just wondering but are you in the upstate or lowcountry of SC? God bless and goodluck!

LupieOne 11-10-2004 04:44 PM

Re: Lupus vs. Lyme
First of all, this is in no way directed at any one person and not meant to be offensive, but this is an important subject area that needs to be mentioned.
So if it offends anyone, its not intended, but is said out of concern.
That being
Ok...while I appreciate everyone's opinion on this matter and understand where it stems from its important to remember this: [I]Lupus is a dangerous and complicated disease and even more so if left untreated![/I]
While we need to explore all avenues when it comes to our health and obtaining a DX...I cannot stress enough how important it is for anyone who is taking Lupus meds-or Lyme meds for that matter- to never stop your current treatment while in search of another DX!
Yes, Lyme is out there, its a fact. BUT, so is LUPUS and Lupus has the potential to be a fatal disease if left untreated or if it gets to the brain, kidneys, lungs or heart. Lyme can be cured, also a fact, while Lupus cannot. There is no cure, only treatment, so please, if you are being treated med-wise for Lupus, do NOT stop taking your meds while searching for other possibilities. It a known pattern among the Lyme community(I was told this BY a LYME specialist btw and have read it in many places as well) that everything and anything someone has MUST actually be Lyme and that, is VERY dangerous to tell people who just may have something else to basically, 'forget that DX...YOU HAVE LYME!'.

I say all this because, obviously, I have Lupus, hense my username. lol [B]Officially[/B] DX'd-I do NOT have LYME, as many will be prone to believe. I've been tested many times for LD and I do not have it. On the other hand, I DO test postive for Lupus and MANY Lupus-related disorders/syndromes/diseases, that a person with LD would NOT test pos. for or even have symptoms of. So there's no question about my DX despite many repeated attempts of LD patients to convince me otherwise.(it happens every time I mention I have Lupus to someone with Lyme. lol) BUT I also have a 10 yr old daughter who was DX'd with LYME this past June- with a pos. LYME test and 24 total bullseye rashes! Now, my daughter, being my child and female, has an increased risk of getting Lupus someday, but her having had Lyme, in no way means that I would ever risk her health should the question of her having Lupus ever come up. I know first hand what having Lupus is like and I know the risks, statistics, etc...I knew 3 people from a Lupus group who have died in recent months. Its NOT a joke or to be lightly taken.
People have to realize too, that people can have more than one DX and I am sure proof of that! lol
The Lyme community says,'you can't mess around with Lyme' well, the same goes for Lupus or other diseases like MS and even more so in many cases. Its a VERY hard disease to diagnose, but just because someone does not have an official DX does not mean they shouldn't be getting treatment for 'suspected Lupus' and [B]never[/B] should they stop any Lupus treatment because someone tells them 'you probably have Lyme and not Lupus.'(or insert whatever other disease. lol)
No one should tell anyone to 'forget what your being treated for, you have Lyme and need to see such and such doctor.'
That is a very dangerous thing to do. Only a doctor can make that assumption/decision and advise you of options and order tests. Stopping any medical treatment because someone insists you must actually have something else is very risky to do, because you may in fact actually have what it is a doctor has told you, you have, have tested pos. for, or are currenty being treated for. Sure, seek out other things if there is doubt...but NEVER end one treatment in search of a different DX based on someone else's opinion or experience.

Soooo...if you question a dx of Lupus, MS, another disease, even Lyme, than by all means, seek out answers, but don't stop treatment! It could be very dangerous to your health!
Again, this is all said out of concern and facts eventold to me by LYME literate docs.

ncgirl88 11-10-2004 06:41 PM

Re: Lupus vs. Lyme

You make a very important point. I don't believe anyone here on the lyme board ever recommended that Ceya stop taking her Lupus meds. We did recommend that she/he find a knowledgable lyme literate doctor because while Lupus is a very hard diagnosis so is lyme as you pointed out. Lyme is systematic too and as well can be complicated by tick borne coinfections that most doctors and many specialists know nothing about.

Speaking for myself, yes, I am urging Ceya while seeking different diagnosis' that she/he can at least feel secure that when tested for lyme and coinfections that the test was the most accurate that could possibly be run and that she/he saw an expert. It is so important just as it is for any disease. As well, if drugs such as prednisone are prescribed to a patient that is misdiagnosed and they have lyme they can get a lot sicker.

I am sure to many it seems that some of us here have a very myopic view. This is a result of the fact that while we were tested for everything under the sun, lyme and tick borne coinfections were never mentioned. Lupus was high on all my doctor's radar screens...they tested me three times but when Lyme was mentioned I was always treated like that was the last thing it could be. So I am sure that is underpinning the urgency you feel in my posts.

I am sorry you have Lupus and I am sorry that your daughter is sick with Lyme. I do appreciate your words of wisdom and advice.

Here's to better days ahead...


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