Lymes and Lupus

[Mee_Shell]

I was diagnosed with Lymes 10 years ago, after over a year I suspect I had it. Shortly after being treated with oral antibiotics, I was diagnosed with arthritis and SLE. However, in ten years I have never needed treatment for SLE. For the past year or so my symptoms of arthritis have drastically worsened. I also have been getting low-grade fevers, which isn't uncommon for me anyway. I have had swollen glands, also not uncommon. But the pain, which has always been part of my daily life, was getting unbearable. I went to the hospital about 9 months ago for severe palpitations. My white count was high, and everyone told me it was stress. Well, it's consistently been high and my symptoms have gotten extremely worse. The pain keeps me from sleeping, even with sleeping pills. The headaches are severe. My muscles are so stiff and my joints are so sore, I can barely keep up with my kids. I had a one hour deep tissue massage and received no relief from my muscle stiffness and pain. I also haven't really had a period in almost a year as well. In addition, I've consistently lost my keys and other things and forgotten important things and have trouble concentrating. Emotionally I feel like a tilt-a-whirl. I am dizzy a lot and moving can make me lose my balance and see stars. I've been really complaining about my symptoms to my rhuemy for over 6 months and he sent me to a hematologist who said it wasn't luekemia and sent me on my way, and my rhuemy actually said it could be easily related to my menstrual cycle. My GYN ran tons of tests and ultrasounds, etc. and couldn't find anything wrong with me. Finally my family doc tested me for Lymes and it was positive. But the truth of the matter is, I am beginning to wonder if it ever really went dormant. I don't know if I was totally treated for it the first time because though some symptoms lessened, none ever went away. And maybe I never had Lupus at all and if it's been the Lymes causing all of my symptoms all these years and my ANA has constantly been high. The only reasoning for the diagnosis of SLE was my ANA, pretty severe Raynaud's, it's in my family, and my symptoms of fevers, pain and fatigue, etc. I don't know if the pill antibiotics will make me feel better. Because I never really felt better the first time. So I am asking is it possible that it's been Lymes all along and it's never been cured at all? And could persistent Lymes mimick Lupus?

[Mee_Shell]

By the way, I also have a pretty obvious butterfly rash and constantly have sores in my mouth and/or nose. My rhuemy has always thought I had Lupus and he didn't think the Lymes was related the first go around. His theory was, the Lymes triggered the gene I already had for Lupus to go active and this time the possibility of my Lymes coming back is greater already having auto-immune issues (I also have Graves Disease which is pretty under control for a while now). But I don't know. They don't know much about these auto-immune things so who knows. I am just looking for answers I can't find.

[JackieCalifornia]

Welcome to our corner of MedHelp.

Everyone here has a different story of how Lyme affects them, how they came to receive a diagnosis of Lyme, and how they are treating it.  The long road you have travelled is unfortunately not uncommon, and if I were in your shoes, I would pursue the possibility of Lyme and other infections (aka co-infections) that are carried by the same ticks as Lyme:  at worst, you will decide you don't have Lyme; at best, you may find relief.

It is interesting and valuable to know that you were actually diagnosed with Lyme, and if you received the 'standard' treatment of a week or ten days, or even a month, of antibiotics, it would not be unusual (based on the experience of people commenting here) that your symptoms have  continued and worsened.  How long ago was your Lyme diagnosis and treatment?

The position of the Centers for Disease Control (CDC) and the Infection Disease Society of America (IDSA) is that Lyme is easily treated with a short course of antibiotics, and if any symptoms continue or arise later, it is because of an obscure 'post Lyme syndrome' which they attribute to an overly vigilant immune system still reacting to a disease no longer present.  

To the contrary point of view, a different medical society, the International Lyme and Associated Diseases Society (ILADS) believes that the strict definition of Lyme that the CDC and IDSA use (must have had a tick bite and a circular rash; must test positive on ELISA and Western Blot) are far too restrictive and were not developed for purposes of diagnosis, but for the narrower purposes of tracking the spread of absolutely clear cases of Lyme for epidemiological purposes.  That doesn't help people who have Lyme in the broader sense than the epidemiological definition -- hence ILADS was born.

I rattle through all this because you will hear references to the dispute in the postings here and should be aware that there is such a dispute, which leads non-ILADS doctors to disagree (sometimes strongly) with the more aggressive treatment protocols developed by ILADS doctors.  You will also hear the term "LLMD" which stands for 'Lyme Literate Medical Doctor', which is shorthand for a physician who looks beyond the CDC/IDSA standards and to the mass of suffering patients out here and tries to help us.  

Because Lyme was first observed and described by rheumatologists, they focussed on Lyme arthritis which particularly affects knees; then other specialities had their whirl with Lyme, and the result was the old story of a group of blind men describing an elephant by the part of the elephant they happen to be touching:  to rheumies, Lyme is all arthritis; etc.  Unfortunately as you may be experiencing, Lyme affects the whole body, sometimes in wildly different ways, and sometimes in wildly different ways in the same person at different times.

None of us here is a doctor, so please do not rely on us for medical advice, but we are happy to share with you our experiences and advice that we have gleaned the hard way.

One area of continuing confusion is the overlap of Lyme symptoms with those of lupus and MS, for example.  Sometimes it's never really clear, but those who pursue Lyme treatment and find improvement often conclude that yes, it was Lyme and not X.  Given that you had (and therefore may still have) a case of Lyme, that would be a red flag in my mind.  

The other symptoms you describe (headaches, pain, stiffness, emotionality, poor balance, forgetfulness, poor memory, visual disturbances, palpitations) are common Lyme complaints.  The coinfections that sometimes come with Lyme (babesiosis, ehrlichiosis, anaplasmosis, and others) also can produce symptoms overlapping with Lyme, making diagnosis more difficult.  Although you don't say so, I am guessing that you were not tested for coinfections when you were treated for Lyme, but that is something an LLMD would do.  It's also possible you were reinfected and also got a coinfection, which makes it all worse -- that happened to me, I believe:  a mild Lyme case that then suddenly became horrific two years later when I was reinfected with another dose of Lyme, plus Babesiosis.  For some people, the ramp up in symptoms occurs in times of stress not related to reinfection.  You also mention Reynaud's, which I understand can also be a symptom of Lyme because of the way the Lyme bacteria hijack the body's regulatory system (thyroid, for example, leading to chronically low body temperature).  As to the ANA test results and the lupus/Lyme overlap, there are others here who are more conversant than I on that topic.  I don't know about a link with Graves disease.

I am sure others will weigh in here in the next few days to comment on your post, but I would strongly suggest you locate an LLMD and take your test reports to see him/her.  If you need help finding an LLMD, let us know what area or state you live in and how far you are able to travel, and we might be able to dig up some LLMD names for you.

Again, welcome -- sorry to hear of your situation, but don't give up!

[JackieCalifornia]

Sorry, I see you said you were diagnosed with Lyme 10 years ago.

[cindy903]

That is so interesting that Lyme could trigger SLE according to your doctor. Anything is possible and the more I research myself, the more I find that nothing surprises me. I'm sorry you're having difficulty. Jackie's right, if you want to treat late stage Lyme Disease, you need an LLMD.

There is really no way to know for sure if Lyme causes other things as it affects everyone so differently.

Good luck with all of this. No matter what road you choose, I hope you get well soon and find the relief you deserve.

Regarding the dizzy symptom, you could consult an ENT to see what's causing that.

[wonko]

I think it's all been said.  If I were you, I'd be curious enough to consult an LLMD and consider antibiotic therapy.  You may have Lyme or lupus or BOTH.  It seems worthwhile to look deeper into the possibility of Lyme complicating your current health.  If any of your symptoms can be alleviated by Lyme treatment, you'd be that much better off.

[patsy10]

Did you get more than one rheum opinion regarding the Lupus?  A positive ANA in itself does not diagnose SLE.  Like others posted, I would see a LLMD.

[Amyloo]

Ditto on all of the above.  I am an "MS" er with Lyme.  

P.S.  Jackie, great post.