Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Hi, folks. It's been awhile! I wish I could say it's been due to my getting much better. Nothing could be further than the truth....
I know that many Lyme patients are initially misdiagnosed with, and even treated for, Lupus. And perhaps there are some initially misdiagnosed with Lyme who have Lupus, but that's got to be more rare since so many fewer docs really know the deal with Lyme....
Well, I have both, and the inability of docs to appreciate this has me now on my deathbed. I'm a fighter, though....
To make a long story short: I was first diagnosed with Lupus, but I eventually assumed I didn't have it as I kept getting worse. (Lyme went untreated.) Then, I was diagnosed with Lyme, but I've had nothing but treatment failures over the past ten years. (Lupus went untreated.) Also, all the oral meds I'd been put on for years wrecked my stomach, and now I can't tolerate meds for either condition. There's a longer story here that I won't get into right now due to the lateness of the hour....
I'm sure some will say that if treated properly for Lyme, the "Lupus" will go away, but I know I truly have both, and, somehow, I have to get treated for both. Meanwhile, I have severe swelling apparently due to Lupus kidney involvement.
Is there anyone else here who really does have both conditions? I'd love to hear from you. I know it can't be that uncommon. Plenty of people with Lupus live in highly endemic areas for Lyme and get bitten, and plenty with Lyme have the genetic propensity for Lupus.
Sorry this was so wordy. I hope I'm making sense. I'm barely sleeping these days.
I've missed you!
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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posted
Many with Lyme have a positive ANA. Some doctors who are not Lyme literate may think it is Lupus,but I don't know anyone with Lyme who really has Lupus.
My ANA is positive and two LLMD's told me that is very common in Lyme patients. I am being treated for Lyme plus coinfections.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Lyme and co-infections go intracellular. Then when the body goes on the attack, we end up with autoimmunity. Just about all of us on this board have some sort of autoimmunity, imo.
My LLMD also says that the test results for Lupus are usually related to the Lyme, and with treatment should get better.
I've heard this now from so many reputable sources that I believe it.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Sounds like you need a better doctor.
I got a Lupus diagnosis first, then found out I have Lyme.
My ANA fluctuates between positive and negative, and I've been on Prednisone a few times with generally positive results.
But I also respond to Lyme treatment, and believe in my case the "Lupus" really is Lyme and coinfections.
I think there is immune dysregulation in those who have both an autoimmune diagnosis and a Lyme/coinfections diagnosis, and this definately needs to be considered when treating these individuals, as immune stimulation is the wrong approach for them IMHO.
An Integrative approach is certainly needed in the setting of autoimmunity and Lyme...more so than in those who do not have autoimmunity along with 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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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Thank you all for your replies!
It's a sticky wicket. lol While I appreciate what you all are saying, I know it's possible to have both conditions independently. For instance, one can have the genetic propensity for Lupus, experience a trigger, and have full-blown disease. Then, she can get a tick bite, and whammo. Both conditions!
My LLMD is actually well respected and recommended here, and there's more going on than a positive ANA. I've never responded to Lyme treatment except to get worse. I never felt better on the treatments, either. That doesn't mean I don't have it, of course, but, in my case, because of doctors' paradigms, none previously would consider the possibility of both conditions concurrently, the Lupus docs and the Lyme docs.
I can only speak for myself, and this is my reality. Gonna be "interesting" trying to get treatment for either condition!
Well wishes to all.
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Star, i feel for you. We have lupus in my family--- and although, I have never had positive ANA tests-- everyone in my family thinks i should be treated as if it were an autoimmune disease. I some times think they are right. but so far have kept treating the lyme. I do believe that you can have both. And that each makes each other worse.
But what my PCP says... is you deal with which ever symptoms are more dyer. How would they treat you if you ignored the lyme dx... with prednisone? I know many say it is the absolute worst thing to do for lyme, but if lyme treatment isn't working for 10 years perhaps try treating the lupus... at some point you have to think of quality of life.
I know even the little boost I got from a cortisone shot in my foot lowered my entire body inflammation for a month or more... i did relapse a bit again... but that month of feeling better, gave me the energy to power through. I was on ABX at the time though, and they do say that if you do have to take prednisone, you should be on abx too... are there any you can still take? I know flagyl and cipro are often used to heal stomach/gut issues...so just a thought.
I wish you luck... lyme or lupus are bad enough...both must be very hard.
Posts: 1728 | From USA | Registered: May 2011
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posted
I had a very positive Ana. I've been in limbo myself about this. Lyme, lupus or both?
Posts: 415 | From USA | Registered: Jun 2012
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posted
My son's tests looked like a lupus patient. He also seem like a rheumatoid arthritis patient... although he never was rheumatoid factor positive.
He has bilateral arthritis... ankles, shoulders, hip flexors, costochondritis (at the sternum) and he has virtually nothing now, after good Lyme treatment with an LLMD who is also a rheumatologist.
He was treated for Multiple Chronic Infections, including Lyme. He tested positive for Lyme and also for babs duncani. He is well after almost two years of antibiotics,antiparasitics, antifungals, and antivirals.
Infection can look like Lupus.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Yes you can certainly have both. I think it is wise to look beyond lyme as I feel sometimes patients as well as doctors can get stuck on a lyme merry go round The LLNP I was seeing was only looking at Lyme. I recently went to a new LLNP and discovered alot of my "lyme symptoms" were no longer being caused by Lyme,just some of the mess it left behind.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
I am currently seeing a Rheumatologist that treats both lyme and autoimmune disease. He balances both treatments and uses traditional drugs, along with lyme treatment.
He's big on IVIG and just the other day I was getting an IV antibiotic infusion and sat next to a patient with lupus getting IVIG. If your IgG subclass is low, you may qualify. I don't know if you've considered IVIG, but it may be a component to your treatment if your immune system is compromised.
Posts: 964 | From san diego | Registered: Oct 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I haven't been here in a while, but came back to search this very topic. I am starting to think that my DD has both Lyme and Lupus or some other type of autoimmune issue.
Since 2011, she has had a highly positive ANA. She has been tested for the lupus and RA factors and both were negative. She is not getting better though, and her gut has been wrecked from all of the abx. I have actually made her an appt. with a local rheumatologist that I trust. In my gut, I feel like something else is wrong.
She got much better cognitively when she was treated for bart. Other than that, I haven't seen much change in her and it's been three years since we started treatment. I am perplexed.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I was just tested for Lupu and do not have the answer yet, but the rheumatologist said that for Lyme patients a possible treatment is anti-malarial drugs!!! they have immune modulating effect. Something to look into...
Posts: 116 | From California | Registered: Feb 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Interestingly, before I knew I had Lyme, I was put on hydroxychloroquin (generic Plaquenil - antimalarial)...
The only thing beneficial I got from taking this drug is the hand pain seemed to be a lot less.
However, I decided to stop the drug because my eyes -dry, irritated - got a whole lot worse on this drug.
Well, now I'm wondering if the eye issue was a herx instead of a side-effect? But it seemed to only get worse the longer I was on the drug...and stopped immediately when I stopped the drug...
I know Plaquenil can cause visual field problems in rare cases as a side-effect, so that's why I didn't want to be on it in case the eye irritation was leading up to fisual field problems.
Hmmmmmmm.....
-------------------- -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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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I forgot to mention in my earlier post tat the LLMD put DD on plaqunil in feb. hoping it helps.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I'm still in the same situation. Positive ANA, Positive Anti-ds-DNA test and positive for SLE.
I don't know what to think either.
Posts: 1408 | From Tx | Registered: Nov 2009
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