Hi all. Ive had lupus since 2009 with complete remission in October 2013 after going gluten free. I've felt great and Ben keeping up with my three boys! Then disaster, in May I started with fever and unexplained pains. Evaluated for lots of things but nothing definite = VIRAL or perhaps Lupus flare with atypical symptoms. Felt better after a week and then in way June felt horrible again with 101 fever, exhaustion and swollen lymph nodes, pain all over, elevated CRP, creatinine, sed rate, low platelets and white blood cells count, shortness of breath, numbness in my hands and right flank/rib pain. Diagnosed with kidney infection after finding blood and infection in urine. IV antibiotics were dumped into me at the hospital. Then when I didn't get better when the infection cleared my PCP did a lyme test. The ANA game back positive and ELISA positive for lyme. Started doxycycline last Monday for 28 days. Then the nurse called and said my Western Blot was negative but to keep going with the antibiotics anyway.
I called the rheumatologist on July 2nd and he couldnt see me but did review my labs and said if I didn't feel better to go by this week and see him.
Can having Lupus cause false positives on the lyme tests? I don't have lupus symptoms I would usually have...particularly my telltale rashy face and arms. But could it be something other than lyme and the Lupus caused the ELISA to be positive ?
Any feedback is greatly appreciated. I'm still hurting and pretty scared.
Others here with more information about your specific questions will weigh in, I am sure, but a few comments from me:
-- "when I didn't get better when the infection cleared, my PCP did a lyme test. The ANA game back positive and ELISA positive for lyme." Good for your PCP!
-- "Started doxycycline last Monday for 28 days." Doxy is the first-line med against Lyme, but is effective only right away after a Lyme infection. It happens that you can get a Lyme infection and the body manages to hold it off, leaving you just tired and a bit under the weather until, for example, getting bitten again and upping the bacterial ante. Many of us never see the bugs or the bites, and don't know when we were infected initially or reinfected later. The charming reliance docs often take on having seen a bullseye rash and a tick attached for at least 'x' days is wholly misplaced imo.
Also, doxy is generally not effective against other infections (collectively called 'co-infections') that the 'Lyme' ticks also carry about half the time.
So if you see the tick/rash and get treated right away, there's still a 50/50 possibility the tick brought you another infection or two that don't respond to doxcycline ... and if you had a low level case of Lyme from a previous bite, doxy might not work on that, because after a period of time, the Lyme bacteria hide in protected areas in the body (called biofilms) where the immune system and the doxy can't reach. It takes other meds to break through the biofilms and kill the Lyme bacteria.
All rather tedious, eh. Docs rely heavily on the assumption that every sees the tick that bit them and got it attended to promptly, but it doesn't always work that way. I never saw 'my' tick or had a rash at all, but I had Lyme and babesiosis, which is a completely separate infection often carried by the 'Lyme' ticks....
... which brings me wondering whether your doc considered the possibility of co-infections, which can include bartonella, ehrlichiosis, babesiosis and a few others. These infections need separate tests and usually separate medication for treatment. Having lupus adds another layer of complexity for you.
And the final issue is that docs in certain practice areas (like rheumatology and some others) often do not 'believe' that Lyme is really everywhere (and not just in some isolated areas of the country) and that the usual tests given to detect Lyme (ELISA and Western blot) do not have a particularly good success rate in detecting Lyme. Why? Because ELISA and Wblot tests look for your immune system's reaction to a Lyme infection, but shortly after infection, Lyme will enclose itself in slimy shields called biofilms, which keep tests from being positive and keep doxy away from killing the bacteria.
So what to do. I would find a Lyme specialist without delay and (if you have them) take with you copies of all your recent test results. You may not want to tell your current docs that you are off to see a Lyme specialist, because there is a fair amount of animosity toward Lyme docs. Among patients, we sometime refer to Lyme specialists who 'get' the whole concept as LLMDs, short for 'Lyme-literate medical doctors.' It's not a degree and they can be any kind of medical specialist or just a GP -- what matters is that they have an open mind and understand Lyme and its coinfections. Sadly, infectious disease (ID) docs and rheumatologists are among the specialists who often have little respect for Lyme as a miserable disease and my not take it seriously.
Right after infection with Lyme, a few weeks of doxycycline may work against Lyme, but may not work at all against at least some of the other possible co-infections named above. Different infections, different treatments.
You also say: "Then the nurse called and said my Western Blot was negative but to keep going with the antibiotics anyway." This is good; it shows the doc takes the situation seriously.
You also say: "I called the rheumatologist on July 2nd and he couldnt see me but did review my labs and said if I didn't feel better to go by this week and see him." There is no harm in seeing him, but be prepared for him not to be much interested in Lyme and its co-infections, unless he is an exceptionally broadminded rheumie.
There is a terrible split in the medical community, and the patients are the ones who get hammered as a result. There is no convincing a doc who thinks Lyme is like the sniffles and will go away with some doxy, and overlooks the co-infections and any continuing symptoms you may have after treatment with a short course of doxy; this is sometimes referred to by the non-believing docs as 'post-Lyme syndrome', meaning you may still feel ill, but it's only your immune system overreacting to a now-dead infection. There's often no convincing a doc who has given you a few weeks of doxy that there could be anything still lingering, and that's why, if you're not 100%, I'd quietly find a Lyme specialist for a second opinion. It took me 20 docs to find my way to a Lyme specialist, and it was he who diagnosed and treated me for Lyme and babesiosis (similar to malaria, but often carried by 'Lyme' ticks).
Sorry for the long story, but that's where Lyme diagnosis and treatment is currently. Nothing to do but bob and weave and find a Lyme specialist who sees more than one color in the rainbow. Let us know how we can help, okay? I'll send you a private message through this system on how to get a referral from ILADS to one of their member docs, if it's useful.
Get and keep copies of all your tests through this process -- start a binder and don't assume a doc's office will always keep and file all your previous data. Better to have a full set yourself for future reference if needed (like if you change docs along the line).
Jackie gave you excellent info but I just want to mention that I was misdiagnosed with Lupus. It was really Lyme. More and more they are saying lupus is really Lyme. A good example is going into remission when following a gluten free diet. Many lymies do the same.
Thank you both so much. Im convinced that I do have Lupus. Aside from RNa antibody tests I get the textbook rash on my face and arms. Honestly never suffered joint pain and muscle pain with lupus that comes close to this current hell. I'm concerned about co-inflection now sufficiently (thank you for the advice) to get additional testing. The numbness in my hands and arms is getting worse having started only in the morning but now occurring off and on through the day. It seems to be a symptom Of the babesia primarily. My neck also is very painful and I can't turn my head. Not sure if I'm improving in the 7 days I've been on meds. I found an LLMD in Portland but he
Thank you both so much. Im convinced that I do have SLE. Aside from RNa antibody tests I get the textbook rash on my face and arms. I was more concerned that I was taking all these antibiotics when it was really Lupus skewing the test! Honestly never suffered joint pain and muscle pain with lupus that comes close to this current hell. I'm concerned about co-infection now sufficiently (thank you for the advice) to get additional testing. I was only tested for lyme. The numbness in my hands and arms is getting worse having started only in the morning but now occurring off and on through the day. It seems to be a symptom Of the babesia or lyme neurological symptom? My neck also is very painful and I can't turn my head. Not sure if I'm improving in the 7 days I've been on meds. I found an LLMD in Portland but he doesn't take insurance so I need to research the costs before jumping in. My Pcp is a DO and pretty progressive. Will keep you posted and completely appreciate the wisdom of everyone's experience here.
Don't be surprised if you initially feel worse on meds -- it's called a Herxheimer reaction -- 'herx' for short. It means the toxins and garbage that the bacteria have inside them are spilling out as the bacteria die. It's a temporary state, doesn't last more than a couple of days at most -- tho I didn't have much herxing, so someone else here should speak to that point.
It will taper off as time goes on, because there will be fewer dead bugs to spill their chemicals. Don't stop the meds unless you are really in bad shape, and call your doc if your think the reaction is out of what you can handle. It's always possible there's something else (an allergic reaction to a med? dunno) that your doc should be the one to make the call on.
Be sure your magnesium (Mg) levels are up to par -- that will help you feel less aching and misery -- and Lyme uses up Mg in your body.
About the doc not taking insurance: quite a few LLMDs don't take insurance -- mine didn't. The reason is that the doc doesn't want to have to hire a squad of billing clerks ($) to argue with the insurance companies. Oddly enough, I found (and others have too) that if you pay the doc yourself, then send the paid bill to your insurance, you stand a really good chance of getting a whole bunch of the $ back. Worked for me. You could call the insurance company and ask just generally about how that works, tho maybe make it a general question instead of saying Lyme. That gets people's hair on fire sometimes.
I was reading your post today after trying to research a few things. I have also tested positive for Lyme ELissa, ANA, CRP, and SS-B. I was diagnosed with Fibromyalgia in 2012 but thought there was something else going on as I had too many symptoms to warrant it just being Fibro. My appts. to see the Rheumy and Physiatrist (he sent me for the lyme test) is not until May and June and its driving me crazy as symptoms are persistent, but do come and go on a daily basis. I also see a Nutritionist who thinks it's Sjogrens. I was not given any meds, except the regular stuff from my naturopath. Now the Health dept in my area is questioning my treatment of the Lyme disease from the Physiatrist and I am being sent for a second test!! Any advice?
I don't think I've seen jrabbit post here for a while, but s/he may see a notification of a response from you and pop up. In the meantime, a few comments from me if it's helpful.
To my understanding, fibromyalgia is not a disease but is instead a collection of symptoms with no known cause or treatment: a syndrome. Interestingly, the symptoms and course of 'fibro' act very much like an infectious disease, tho some of the higher-ups in the medical profession have years ago decided that they would not classify fibro as the result of an infection, particularly Lyme disease. Until this split in the medical community is remedied and the senior docs who have staked their reputations on Lyme as being rare, hard to get, and easy to cure with a couple weeks of doxycycline, there are many of us who are told we cannot possibly have Lyme, which is a bacterial infection.
Rather than diagnose a patient with Lyme, the docs who are stuck in the past on this point will often label those with Lyme symptoms as having not an infection but instead a syndrome: meaning a collection of symptoms with no known cause or treatment.
Some areas of medicine -- especially docs who specialize in infectious disease and rheumatology, among other areas -- will not recognize Lyme disease as anything but a collection of symptoms and thus label the misery 'fibro.' There is, to my understanding, no known cause for fibro and no established cure for it: just a collection of symptoms waiting for the docs to wake up.
The US is moving toward a government-run world of medicine similar to that in Canada, where the govt says what is or is not an illness and how it shall be treated. For now, the US medical community is not entirely under the thumb of the government, but Obamacare is moving as fast as it can to take over that whole sector and become like Canada and other government-run approaches. The difficulty is that Mother Nature does not play by those rules, and when a new or emerging illness appears (like AIDS did a few years ago), the government is slow and resistant to recognizing the situation.
Thus your doc is following the approach required by government-run healthcare: new illnesses need not apply, we're only recognizing those we already know about from years ago and will define out of existence any new ailments. But you already know this, given that your current doc's approach is being questioned by The Authorities.
So. What to do. In your situation, I would find a Lyme specialist in NY state for an evaluation, if you think the situation in Canada will hamper your ability to get a full diagnosis and treatment.
You might post a new message here asking for the name of a recommended doc near [whatever cities you want to include], and also check with CanLyme, which has been around for quite a while and can likely guide you through finding a Lyme doc for an evaluation.
Yes, it will cost money, but it beats being sick forever. Lyme can sometimes go into hiding and you might feel better for a while, but it's still there and won't just go away. It's a bacterial infection in the same family as syphilis, and no one would sensibly wait for syphilis to do its bad works. So you may have to do all this outside the Canadian national health program, but ... it beats being sick forever. The sooner you take charge, the better.
Let us know how we can help ... and do check in with CanLyme and see what help and information they can provide. Best wishes!
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