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Posted 10/12/2011 12:20 PM (GMT -5)
Hi Everyone!

I am new to posting (not really new to lyme), and have been reading posts on this board for quite some time. I could really use some feedback from those of you that may be able to relate.

I was diagnosed with lyme (+ coinfections) in June of 2009. My symptoms presented in February of 2009, although a few red flags were seen earlier. The summer of 2007 I had a bulls-eye rash, but since I do not live in an endemic area it was not recognized. I worked in a hospital and went to work showing this weird rash to a few doctors and nurses I knew well. No one recognized it. So, I guess you could say I ignored it and did not think of this again until the summer of 2009 when my symptoms persisted and we had no answers. Because of my profession I was actively researching and had friends doing the same. That is how I stumbled upon the discussion of lyme and the controversy surrounding it.

I scheduled an appointment with a LLMD and have been under his care since June of 2009. I have taken a few breaks along the way, but for the most part have been on a variety of different antibiotics. You name it, we have probably tried it. The only exception being we have not done IV antibiotics, as my heart is not considered strong enough.

I have a long list of symptoms like many of you … muscle/joint pain, severe fatigue, a constant fever, weight loss, cognitive difficulties, ringing in my ears, chest pain, sinus tachycardia, etc.

The past several months I have been discouraged with my lack of progress. I continue to see my LLMD, and he has been somewhat stumped as well. I also see a local internist that oversees some of my prescription meds. He recently suggested I meet with a Rheumatologist as he feels we have been trying antibiotics for so long that we should be seeing more progress than I have made … he thinks we are missing something.

Last year I was admitted to the hospital and my local doctor ran a multitude of tests. He wanted to rule out specific autoimmune conditions. The labs specific to lupus came back positive, but I did not feel comfortable with the diagnosis and wanted to continue the antibiotics.

Now, almost a year later, I am still not making progress and have scheduled the appointment with a Rheumatologist. I’m willing to listen and see what they have to say.

I was wondering if anyone out there has been diagnosed with both lupus and lyme … is that even a possibility?

I have positive labs for both, and clinical signs/symptoms could fit in to either category. How do you know for sure what way to go?
Posted 10/12/2011 3:51 PM (GMT -5)
Lyme is known to elevate the ESR and ANA. And Lyme can also cause positive autoimmune antibodies (such as anti-DS-DNA).

Personal experience: I was diagnosed with "Secondary Lupus-Like Syndrome" by the Rheumatologist, before I knew anything about Lyme. Then, after getting diagnosed with Lyme (and all the pieces of my health puzzle falling into place), my Lyme doctor also diagnosed me with Lupus, but he says it is secondary to the Lyme and will likely go away or become much less of a problem once the Lyme is under control.

Bottom line? Yes, it is possible to have both, but many believe that Lyme is one cause of Lupus (and other autoimmune disorders) even in those who don't know they have been exposed to Lyme.
Posted 10/12/2011 4:45 PM (GMT -5)
Thank you Razzle, I really do appreciate your response.

I'm wondering what I should do if antibiotics do not seem to be helping (having tried various antibiotics for two and a half years)? Having my LLMD say he was "stumped" has me concerned, and some what discouraged.

I wonder if there is any one out there that had lyme and then a diagnosis of lupus (or secondary lupus, like you mentioned) that got better with a different approach? Did your Rheumatologist treat the lupus, or did you just focus on the lyme?
Posted 10/12/2011 7:09 PM (GMT -5)
Hi SelahGrace!
Welcome to our forum! I am so sorry to hear what you have gone through. We know how frustrating it can be. It's quite a compliment that you have been reading here for so long and decided to join us!! Thank you from all of us!! smilewinkgrin

Kind of a silly question, but are you detoxing? Doing the detox baths, dry skin brushing and drinking lemon water? Do you use an FIR sauna? Or some other forms of detoxing? Here is a link to a very good article about issues with toxins for those of us dealing with Lyme: findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1

Figured it can't hurt to ask!

If the reason for this is because Lyme has raised your ESR and ANA, then is it possible that one of the co-infections is to blame? Babesia infections are known to hamper the healing of Lyme, for one example.

I do hope that you don't actually have Lyme induced Lupus. Please let us know how things go and what you find out when you are up to it!
Posted 10/12/2011 7:14 PM (GMT -5)
I think anything is possible once you have a disease ravaging your body and lowering your immune system the way lyme does. That being said, how long were you on antibiotics continuously? It took me a long time to feel better and I still haven't gone off antibiotics yet and am worried about when I do. Perhaps you have a different strain or may not have found the right combination of meds. It certainly doesn't hurt to keep pressing as long as they continue to treat the lyme at the same time.
Posted 10/12/2011 11:56 PM (GMT -5)
You're welcome.

You may need to seek a second opinion from another LLMD. I saw a few different ones before I finally decided to stick with the one who first diagnosed me with Lyme - he seems to understand my sensitive system the best.

I was in treatment for 2 years and then decided to take a break from the abx for a bit (at the begining of this year). But I got worse during my abx break, and then had two severe systemic allergic reactions and had to go on steroids for those, and I did not want to be on steroids without being also on abx, so went back on the Ceftin. But then I told my doctor that I didn't feel the Ceftin was really doing me much good anymore - it did help when I was on it initially, but it stopped helping.

So now my doctor has me on Flagyl and Andrographis...and I'm herxing and yet also feeling some things change for the better finally. So please don't give up just because you haven't found something helpful in 2 1/2 years of treatment - many of us seem to need more than that to start to get a handle on this darn disease.

My Rheumatologist put me on Plaquenil and told me to take aspirin, though I made it clear that I'm allergic to it... Well, I tried the Plaquenil and it did not help my symptoms (except it did help my hand pain a little bit), and also it bothered my eyes (they felt more dry and irritated), so after 1 year of the Plaquenil, I decided to stop taking it because I didn't feel I was getting any benefit out of it.

I also never went back to the Rheumatologist because his take was that I was basically a nutcase and he wouldn't even commit to a diagnosis of Lupus for me even though I had enough of the diagnostic criteria and labs to back up a Lupus diagnosis.

So yes, I chose to focus on the Lyme instead and see what happened to the Lupus symptoms with Lyme treatment. In my case, the Lyme treatment does affect my Lupus symptoms, and my ANA count goes down when I'm on abx. and goes back up when I'm not on abx.

Something to look into perhaps is the Road Back Foundation - http://www.roadback.org/ These folks believe that autoimmune disorders such as Lupus and Rheumatoid Arthritis have an infectious cause and they promote the idea that antibiotic treatment should have a more prominant role in the treatment of these diseases than what standard MD's believe. There are many on the support forum there who also have Lyme / Coinfections.

If infection is the cause of your Lupus, the standard treatments for Lupus will not get you better - the standard treatments are immune-suppressive medications that can actually drive the infection deeper and make it more difficult to treat. The only way it is safe for a person with Lyme to take immune-suppressive treatments is if they are also taking antibiotics (or antibacterial herbs).

I hope this helps. Take care,
Posted 10/13/2011 11:37 AM (GMT -5)
Hi Traveler, Springsjean, and Razzle … Thank you all for your response and warm welcome! :)

I am detoxing, but may need to be more aggressive with it. I do detox baths, herbal tea, lots (and lots) of water, and use a detox regimen recommended by my LLMD. I also juice (mostly veggies) when I am able or if my husband is available to help me push them through the juicer. I could not tolerate the sauna as my heart rate would elevate so rapidly (around 190 to 200 – I am very petite and my usual resting HR was 55-60 but is now more like 100-125).

Thank you for sharing the article … Looks like it might be helpful. I do feel I need to pay more attention to toxins. Maybe that is why I am not seeing progress.

I’m not sure if this could be lyme induced lupus, or if I had it before the tick bite and then it just set everything in motion. Looks like autoimmune runs in my family. Before the lyme I led a very healthy and active lifestyle, so if there was an autoimmune condition I may have kept it in check. I guess I may never know. It’s like the chicken or the egg question …

I definitely want to keep treating the lyme. I have been on the antibiotics for 2 ½ years, almost continuously. Only taking breaks due to a herx. I do feel worse when I am not taking antibiotics.

My LLMD also felt we may not have been addressing co-infections as well as we could, so at my last follow-up we changed the approach a little … to antibiotics best for Babesia. It’s been about 3 months since my last follow-up and I’m not noticing any improvement.

I am just not sure about lupus. I look forward to the Rheumatology appointment and what they have to say. My hopes are not too high, but I am trying to keep an open mind (within reason). A good tip mentioned … to continue antibiotics should we have to initiate treatment for the lupus. Maybe that is the piece of the puzzle that has been missing for me.

I will definitely look in to the Road Back Foundation … that has been mentioned to me once before by a friend, but I can not remember if I looked in to it. Thank you for sharing that with me!

All of your thoughts and feedback have been so very helpful … I will probably have to mull over it a few times with my lyme brain :)

Thank you again!
Posted 10/13/2011 4:50 PM (GMT -5)
There is autoimmunity in my family history also. But family history of autoimmunity I don't think guarantees we will have autoimmunity too. Although I personally believe that family history can influence how we experience Lyme symptoms.
Posted 10/13/2011 5:19 PM (GMT -5)
Lots of us have to mull things over for a bit!! Giggle! I'm one that still does! Take your time, we'll still be here! Please do let us know how you are doing, what you decide is the best route for you and what your LLMD & the Rhuemy have to say about the whole thing!! We're a curious bunch and we love it when others share!! smilewinkgrin
Posted 4/1/2012 7:52 PM (GMT -5)
I am a lymie, and have high ANA and antinuclear pattern...now don't know if i have both lyme and lupus or just lyme messing up with my body?
Yikes!
Posted 4/1/2012 7:53 PM (GMT -5)
Razzle, did your lupus tests go down after being treated for lyme?
Posted 4/2/2012 4:42 AM (GMT -5)
Yes, abx cause my ANA to return to normal.
Posted 4/2/2012 7:07 AM (GMT -5)
Hi SelaGrace.

Docs in the know and there's a few, say Lupus, MS, fibro, Parkinsons and more as well as what I was diagnosed with called Sjorgen's Syndromes with joint inflammation auto immune, are actually ALL the same pathogens attacking and living in different areas of an individual's body. Thus different names.

Lymes, mycoplasmas, virals and other pathogens that give these symptoms of what the mainstream doesn't test for in pathogens and calls it auto immune.

The in the know docs say it's bacteria attacking the body, the mainstream says, it's the body attacking the body.

Some of these scientists or research doctors say these names like Lupus, Sjogrens, Chronic Fatigue, Fibro, are "ONLY SYMPTOMS" of the same pathogens.

The strange pains, inflammation, and other symptoms are just symptoms of the same chronic illness found in people with the same pathogens.

I didn't believe my rhumy specialist who was trying to say I developed this incurable auto immune with symptoms over a short time.

Perhaps easier for me being "duped" by mainstream recently from something else so I questioned. Plus my cog and so so sick and weak, as much as he tried to fit it in, didn't explain my stuttering etc.

I got online, found this site, Dr. Garth Nicholson nominated for a Nobel Peace Prize, molecular biologist. Got tested for Mycoplasmas Fermantans of which I was positive.
www.immed.org

I felt through symptoms I had neuro lymes with co infections too of virals and other bugs and just this week got more "outside" physical signs like livedo rash, blood pin prick rash and bart stuff, swelling in feet, all after baths and very strong.

I found the pics of what came on after my baths, online finally on a maryland lymes rash site. Some lasted a few days, some left after a few hours.

I'm confirmed just like I suspected. I'm health nut ex runner so it's not anything else. Low body fat and great cardio.

Many of us had positive ANA's myself included and misdiagnosed with these fantastic autoimmunes and have lymes. I truly believe, the docs that say these diseases are just symptoms of chronic pathogen infection.

They are saying, Lupus IS lymes. MS is lymes. Symtpoms "of" right? NOT 2 different diseases.

http://www.immed.org/illness/autoimmune_illness_research.html

Good okay? Wishing you all the best and healing.

Post Edited (waverunner) : 4/2/2012 6:13:31 AM (GMT-6)

Posted 4/26/2012 8:01 PM (GMT -5)
Somehow I have not received notification that there were new responses to this thread. Will have to check my settings … glad I came back to read my original post, and mull over the responses some more.

I have quite a bit to share, but will try to be brief …

I am still seeing my LLMD (that is out of state for me), and my local Internist (he helps me manage some of my symptoms). My Internist referred me to two different Rheumatologists that were of no help, for the most part. Both Rheumatologists agreed tick borne disease was a piece of the puzzle (they did not want to argue with me on that), but they thought at this point I was dealing with an autoimmune condition, most likely lupus (due to my labs, symptomology, and family history). I have tried different therapies but the only thing I have found to help is antibiotic protocol.

I am now trying to stick it out on the Plaquenil. I have only been on it for 6 months (continuously), and was told the peak effect could be 1-2 years.

I am detoxing, as I mentioned before.

I have also just started UV Blood Irradiation Therapy, and I had my second treatment today. It is too soon to tell how I am responding.

Something else I have tried over the past couple of months is focusing on my diet … more so than ever before. I started with testing for gluten intolerance/celiac, and to my surprise my labs revealed I have celiac! My doctor did not seem so surprised, and I guess the more I have read about it I am not either … as these things seem to all be connected.

So, maybe it was lyme that triggered it all? Apparently I have a genetic predisposition for developing said autoimmune conditions. But who really knows? I don’t want to make any assumptions. Just wanted to pop in and share the latest with me. Going to focus on continuing the Plaquenil (may add other antibiotics along the way per LLMD recommendations), detoxing, diet, and will continue the UVBI to see if it helps.
Posted 4/28/2012 9:17 AM (GMT -5)
I also had an elevated ANA at the beginning of my symptoms and due to family history of Lupus, was sent to a rheumatologist. He told me that I did not have Lupus, but in getting a copy of my records he said I was being monitored for Lupus. Upon questioning a second rheumatologist (you couldn't pay me to go back to the first one - he wasn't a nice person), he said this could be the beginning of Lupus, but at this point it was not Lupus. Had me very scared and confused. After you go to enough doctors for the same thing and still have no answers, you let go of the "doctor/God" mentality and start making some demands of your own :) Now that I see the connection between LD and a raised ANA, I feel much better about that issue. I also never had trouble with being in the sun (except while on Doxy, of course), so that was a huge relief to me, because I know being in the sun can have terrible consequences for Lupus sufferers.
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