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Old 09-11-2007, 02:38 PM   #1
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VeeJ......

Hi VeeJ. I would like to ask you a question ragarding you being dx'd with lyme prior to your Lupus dx....if that's ok? What made your doctor think that you actually had lyme? Did he run any lyme tests? Were they positive? I know that lyme and lupus are very similar.
I apologize if i'm being to personal.
Thanks,
J

 
Old 09-11-2007, 03:04 PM   #2
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Re: VeeJ......

Dear J, Of course I can share this. Honestly? I was Dx'ed with Lyme on virtually no evidence, other than having a single circular skin lesion in the center of my back. No blood work was done. I was summering in an neighborhood where Lyme was extremely common among its residents, including pets. I'd had a flu-like reaction (body ache & headache & fever) just as the lesion was appearing. I took an antibiotic for 21 days & felt horrible the whole time.

Then the rash returned, with more lesions each time, about every 3 months, still on my back & then also on upper arms. More symptoms & many drs. later, the Dx was subacute cutaneous LE (SCLE), with the annular form of rash.

Hope this clarifies. Yell if there's anything else, OK? Best wishes, Vee

 
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Old 09-12-2007, 06:09 AM   #3
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Re: VeeJ......

Vee, thank you for sharing your story. What did your rash look like? You say that you felt horrible the entire time you were on antibiotics.How so? Can you clarify? Did you have numbness pain etc? If, you don't mind.

I read a thread where a woman was dx'd with Lupus but it tuned out that she has Lyme.....Please don't take this the wrong way but have you ever thought of testing (blood work) for lyme? You never know. I have read many stories of people being incorrectly dx'd. Just a thought.

 
Old 09-12-2007, 07:04 AM   #4
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Re: VeeJ......

Hi, again. My rash started as papules (red raised areas), on upper arms & back, which came & went for 4+ yrs. Then those same papules would reappear then expand into perfect circles, then further expand outwards & lose their circularity. Towards the end, I could have 10-15 on each arm, several in underarm area, and some on back. They cleared without scarring.

You can finds pics of both types of SCLE rashes, if you look: annular & psoriasiform. Mine were the annular form.

I'd had health issues from early childhood, incl. most of the things Dr. Hughes lists as being common in people who later develop lupus (see the "alternative criteria" sticky post at the top of the Board). In my 20's thru 40's, new problems appeared non-stop: chronic fatigue; irritable bowel (chronic); migraines; urinary problems, incl. UTI's and stones; cystitis; joint pain and swelling; sciatica; low-grade fever; breakage along hairline; weight loss; and B-12 anemia. The rashes were actually the LAST to appear.

After numerous dermies & other specialists (urologists, gastroenterologists, rheumies, etc.), I took my sorry self into a respected Manhattan rheumie practice. They could not BELIEVE what they were seeing, as it seemed so obvious to them. But of course they did tests to confirm, i.e., bloodwork, urinalysis, and one last deep punch biopsy (by a dermatopathologist).

On my bloodwork, anti-Ro had finally turned positive. (Maybe it had been positive before but hadn't been caught at the right time?) FYI, anti-Ro correlates with SCLE or Sjogren's, or both. It's also sometimes seen in people who are classified as having SLE.

My last skin biopsy was a fascinating experience. That dr. had me contact my old labs & ask them to send to him my old skin reports & leftover skin samples. (Who knew labs kept old skin???) He performed immunofluorescent stain tests on all samples, old & new; and found all but one "grossly positive"... Meaning he found evidence of lots of "immune junk" deposition at the dermal/epidermal junction, vacuolar alteration, and those "lines" seen in immunofluorescent tests that are characteristic of ONLY lupus rashes.

Why I think my local drs. didn't diagnose me: I believe only ONE, my last GP in a long line, was thinking LUPUS. He sent me to other specialists who got their kicks berating me & failing to do the tests I later learned were the gold standard (e.g., immunofluorescent stain tests). Interesting, too, that almost all failed to take a lifetime medical history. More than a few told me to see a therapist. One, chief of dermatology at a large city hospital, told me to get rid of my dog! (Fat chance.) Bottom line? My local drs. were 20+ years behind, as the SCLE subset of SLE was first differentiated in 1978!

I've taken Plaquenil for over 7 years now & avoided sun ( to that). I'm down to only a few problems: episodic fatigue & pain. But that sure beats the endless up's and down's I had since childhood.

Anyway, that's why I have the SCLE form of lupus, not Lyme...

Oh, the antibiotic did to me what they always seem to do: upset stomach & nausea. And, yes, I had tingling, especially in my arms, it seemed, near the rash areas. Felt like little critters scampering under the skin surface.

What about YOU? Do YOU suspect that you have Lyme? Or lupus? Or something else that can bring on similar problems? Do you have recurrent rashes? What kind of drs. have you seen? What tests have they done? By the way, another reason I was pretty sure I couldn't have Lyme was that my rashes kept recurring; that made me think it just had to be something else, but I had no idea WHAT!

I hope this is what you are after. Give a yell anytime, OK? Best wishes, Vee

 
Old 09-12-2007, 07:14 AM   #5
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Re: VeeJ......

P.S. 3love, I forgot to say that it took me YEARS to realize I'd become photosensitive. I know that sounds goofy, but at first, I'd get papules & rashes MONTHS after sun. The wait time between sun & new rash eventually shrunk to all of a day or so. That also fits SCLE, as most people with SCLE are extremely photosensitive. FYI, SCLE is currently thought to be the most photosensitive of the kinds of lupus. Bye, from Vee

 
Old 09-12-2007, 12:23 PM   #6
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Re: VeeJ......

Hi again, Wow! Your really great at going into detail. I'm sorry to hear that you have been going thru this since childhood. It's one thing when an adult is sick but it's a total different story when it comes to a child. It's good to hear that you are doing better now. I heard that Lupus can affect your organs.....I hope you are ok in that department.

I am seeing a LLMD (lyme literate medical doctor) who suspects that my troubles are due to lyme. I had a blood test that showed positive bands specific to lyme and a slew of neurological symptoms! I wanted to further research lupus because I have read that Lupus is very similar to lyme. But I heard that Lupus will NOT give you positive bands because these bands are antibodies that your body makes towards lyme?
Another thing that me is that when you have lyme, after you start antibiotics, you feel worse ie..your present symptoms get worse or you can get new ones. Which has happened to me...I had a numb like feeling around my nose area since Jan 07 and since starting antibiotics it feels like it has spread out more and intensified....I also have joint pain since starting antibiotics (never had this b4). But, now I find out that if you have Lupus, antibiotics can make you feel worse too.....WHAT GIVES???? Is nothing clear cut?
Anyway, thanks for listening to my rant

Be well,
J

Last edited by 3love; 09-12-2007 at 12:23 PM.

 
Old 09-13-2007, 01:15 AM   #7
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Re: VeeJ......

Hi, J. Good diagnosticians first focus WIDELY instead of narrowing the possibilities too quickly, so hopefully your Lyme-literate dr. will do just that. When you think of it, that's the same approach a dermie or rheumie should take when lupus is a possibility... (Later drs. did test me for Lyme, including Western blot test, but only after I'd taken a course of antibiotics.)

You should ask for copies of all your labwork, so you'll have your own copies (always a good idea)---then you'll be able to see exactly which tests he's run. I really hope your appt. goes well. Drop an update when you have the time, OK? All best wishes, Vee

 
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