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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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