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rcenters
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Date Joined Oct 2007
Total Posts : 259
   Posted 3/2/2009 10:46 AM (GMT -7)   
Has anyone been or heard of someone being misdiagnosed with lyme and ended up learning it was lupus, or vice-versa?
 
I happened to be reading about lupus and it was described as "one of" the diseases that are often called "great imitators", which as you know, lyme is also called that.
 
Although the listed lupus symptoms do not seem familiar to me, figured I'd see what you guys know...

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 3/2/2009 11:28 AM (GMT -7)   
It was thought that I had Lupus for years but I always tested negative on the ANA. I think they can test you using ANA and it is not elelvated in Lyme but is with Lupus.  D

rcenters
Regular Member


Date Joined Oct 2007
Total Posts : 259
   Posted 3/2/2009 12:06 PM (GMT -7)   
And there should not be any CD-57 or western blot abnormalities with lupus as well, then I take it?

ktp812
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Date Joined Jul 2007
Total Posts : 715
   Posted 3/2/2009 1:09 PM (GMT -7)   

I was reading alot on Lupus and there are specific tests you can have done for Lupus not just the ANA. I honestly can't remember what they were but I can look them up if you want. I had them listed at one point and I was going to have my doctor do them. I am still very unsure about my Lyme diagnosis and was looking into other diseases.

I have a low CD-57 but I don't think that test means a whole lot. Post if you would like me to get those test names for you.

Kim


Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 3/2/2009 1:20 PM (GMT -7)   
My doctor wouldnt even do the CD-57, said it did not "prove" anything. I just wanted to see what my levels would show, he downright refused. Not sure why he had such stronge opposition  D

minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 3/2/2009 1:57 PM (GMT -7)   
Lupis was the very first MISDIAGNOSIS among many that I have since 2003.
DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


rcenters
Regular Member


Date Joined Oct 2007
Total Posts : 259
   Posted 3/2/2009 2:15 PM (GMT -7)   
Dowa said...
My doctor wouldnt even do the CD-57, said it did not "prove" anything. I just wanted to see what my levels would show, he downright refused. Not sure why he had such stronge opposition  D

Which doctor?  A doctor presuming and treating Lupus or an LLMD, refused to do CD57?

peacesoul
Veteran Member


Date Joined Jan 2007
Total Posts : 2446
   Posted 3/2/2009 2:50 PM (GMT -7)   
I was dx with lupus in April 07. I was not satisfied with that dx so looked deeper, discovered lyme, got tested and I was cdc neg, but had a few lyme bands, then was dx by an LLMD with lyme Aug 07.

My LLMD thinks it's only lyme, My Rheum doesn't think it's lyme. I think it's both. I think I was infected with lyme many years ago and  it turned into "lupus"
Dr's have no idea what lupus is, as they don't know what fibro is. They gave these illnesses names not knowing how or why they are.

I'm classified as having lupus with lasting effects from lyme.

No one really knows.................yet!


My beautiful inspiration
 
The world breaks every one and afterward many are strong in the broken places


 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 3/2/2009 3:38 PM (GMT -7)   
Lyme actually CAN cause an elevated ANA count, but it won't usually be as high with Lyme as it can go with Lupus. I've got a diagnosis of "Secondary Lupus" but I personally believe it is Lyme because I don't have the symptoms consistant with Lupus but DO have clear symptoms of Lyme. There are specific antibodies present in most with Lupus that may or may not be present in those with Lyme. And it is possible to have both - if a person who has Lupus is bit by a tick carrying Lyme, then they are just as likely to get Lyme as anyone else bit by a Lyme-carrying tick.

My $.02...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).


rcenters
Regular Member


Date Joined Oct 2007
Total Posts : 259
   Posted 3/2/2009 3:40 PM (GMT -7)   
Well, the description of lupus that I found would cause me to describe it as an immune system issue where apparently your own immune system is causing damage.

Doesn't the "other" camp in the Lyme community suggest that "chronic lyme" maybe some sort of immune system response that continues even after the lyme bacteria are killed off by treatments? Coincidence?

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 3/6/2009 7:02 PM (GMT -7)   
Razzle,
I didn't know that LD could cause an elevated ANA, that's very interesting.  I had a "speckled pattern" ANA result.  My Neuro called it a borderline Lupus result, which is crazy.  This is the same Dr. that wouldn't even test me for LD because I never had a Bull's eye rash.  When I finally got a WB 7 years later it was positive.  This Neuro was saying everything BUT LD, maybe MS, maybe Lupus.  I learn something every day! 
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 


tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/7/2009 6:13 PM (GMT -7)   
Both my husband and my 4 year old son had an elevated ANA from lyme!

tickbattler

DocsKat
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/10/2009 2:50 AM (GMT -7)   
I believe ANA can be elevated due to inflamation. My daughter had an elevated ANA with a speckled pattern when she was 5. Pediatrician suspected Lupus, which she of course did not. Was dx lyme, treated for a long time, symptom free for over 10 years.
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