momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I'd really like to hear others thoughts on this and their experiences.
I am (was - haven't been retested in over a year) CDC positive for Lyme & Erlichia through LabCorp and Igenex.
I also have a positive ANA, Anti-DS-DNA and positive urine test for Lupus. It showed SLE.
I'm starting to show more symptoms that are more on the Lupus side than Lyme.
I have read that Lupus can cause a false positive Lyme test but not the other way around and only a positive ANA is possible with Lyme.
The sun gives me rashes and makes me feel worse. My flares now consist of a feeling that my body is attacking itself. It's hard to explain.
Has anyone else had similar happen? I just don't know what to think any more.
I haven't sent my Lupus testing to my LLMD yet. He told me twice last year to test for it and I never did. What prompted me to finally do it was a new butterfly shaped rash that I showed my immunologist who said we needed to run the test.
I know I've posted about similar things to this before - I'm just looking for some feedback.
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I had an ID doc tell me I had lupus, not ehrlichia. All my bloodwork confirmed lupus as much as it can. I never did a urine test that I remember. I just didn't/couldn't believe it.
Sometimes I get the butterfly rash. I think that is because my skin is detoxing. Our face (and sometimes chest area) has very sensitive skin. I think if you did some research on detox you would understand why faces detox first. I don't know how to explain it.
I've seen 2 rheumatologists. While both were puzzled by the blood work, the 2nd one put me on plaquenil to help with the fatigue. It was very gradual and then plateaued.
I'm much better with babesia treatment. Will continue hitting babs, bart and lyme. I think I've tackled ehrlichia with the high dose doxy.
So, long and short of it: For me, it was tick bite disease, not lupus.
Do you have any symptoms that aren't explained by lupus? For me, I had gerd, sleep apnea, foot pain, amongst many others. The rheumy's weren't the only specialists that I saw. I probably saw a dozen before my primary found ehrlichia.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
My LLND believes I have Lyme-induced Lupus. I have the elevated ANA, anti-Smith antibodies, and have enough of the other criteria to get the Lupus diagnosis. This is what I tell other doctors I have instead of Lyme to avoid the whole CDC/IDSA vs ILADS controversy (I've had non-LL MD's yell at me in their office that there is no such thing as chronic Lyme).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I think of myself as having an autoimmune disease due to chronic untreated and misdiagnosed infection- Lyme disease. I don't beleive I would have a diagnosis of Lupus without the infection. I've read where others have their ANA's return to normal. This is my hope. I have had hives from the sun for many years. My immune system has turned on itself.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I tested positive ANA for autoimmune disease and the infectious disease doc said it was Lupus. I have since found out that lots of people get that same diagnosis from this particular doc so I don't believe it. Feel much better on Lyme meds. Incidentally I get that butterfly rash when I'm out in the sun too long. I was diagnosed previously with rosacea which also seems to have resolved with Lyme treatment.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
I was diagnosed with autoimmune disease, inflammation and Endocrinologist thought I might have Lupus but the "numbers weren't quite high enough"....all this before I was diagnosed with Lyme ...diagnosed by Quest....confirmed by Igenex..also have Babesia.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Thank you all for your replies.
Have any of you had the urine testing done for it?
Razzle - do you still get your Lupus numbers checked?
Posts: 1408 | From Tx | Registered: Nov 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Lyme mimics a lot of auto immune diseases but it can probably cause them too. I have antibodies against my thyroid now.
Look into LDN, low dose naltrexone, for treatment. It stimulates endorphins which boost and regulate the immune system. Check this treatment out before you try anything else as it is very effective and cheap with virtually no side effects other than vivid dreams/insomnia when first starting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Lupus like diseases run in our family. I am so sorry for your discomfort. Isn't the butterfly rash a pretty clear dx though...
sensitivity to sun could be all the abx you take for lyme though.
But I just asked my doctor this, if you read the rare side effects for Doxycycline, it says it can cause Lupus symptoms. If I am on Doxy, I get severely achy in my joints, even before my dx of lyme...so I asked her if she thought what they labeled as rare symptoms of lupus from doxy may infact be undiagnosed cases of Lyme. She thought that that was a good possiblility.
are you on doxy?
Posts: 1728 | From USA | Registered: May 2011
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posted
It is interesting the antimalarials are used to treat Lupus. Do I think that this is because it is actually a case of Babesia? No. More likely I think that there is a lot of misdiagnosis, including our own Lyme diagnoses.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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posted
I have lupus and I also have had lyme. Lupus came in 1980, Lyme in 2000. So no connection. But now, it is hard to tell which causes the symptoms. At the moment, I am taking doxy and I know that the aches and pains I am experiencing are due to the meds and not to herxing. So, Kudzuslippler, you're right. Doxycycline exacerbates lupus.
Posts: 123 | From Los Angeles | Registered: Oct 2006
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Since I posted last on this topic my ANA is normal. I did a sun test while in Arizona at Christmas and I had no hives. Hard to believe I had lupus if it went away with Lyme treatment. I never did have the other labs to support lupus but ANA and symptoms seemed like it. All of my symptoms can be found in Lyme and coinfections.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First (after being sure the sun reaction is not from any medication or personal care product):
There are seven disorders (some say eight) that fall under the general name porphyria.
All involve deficiency in the enzymes involved in the synthesis of a substance in the body called heme, which is found in large amounts in the bone marrow, red blood cells, and liver.
This enzyme deficiency allows normal body chemicals called porphyrins to accumulate in toxic amounts in the body. . . .
. . . Porphyria cutanea tarda (PCT). . .
. . . When "Cutanea" refers to the symptoms of PCT, which are on the skin. When exposed to the sun, the skin blisters, and the skin may thicken and darken. . . .
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