I have been experiencing extreme fatigue, muscle twitches all over my body, hyper active knee reflexes, and head/neck/back aches.
My doctor did some basic bloodwork that was all within normal limits except for a Positive ANA 1:320 Speckled. Now he is sending me to a rheumatology specialist as this is indicative of an autoimmune disease. I have been reading the symptoms of Lupus and I know the fatique and positive ANA fit, but not anything else. Maybe joint pain? Really, I just ache all over. I was thinking maybe MS or even Lyme disease, but what I read says that neither are indicated by positive ANA. I am going crazy trying to figure this all out as I wait to see the specialist. Can a positive ANA indicate Lyme? Any thoughts?
Welcome. The symptoms you have are symptoms of lyme but lyme mimicks many other conditions/diseases. From what I have read a positive ANA is not indicative of lyme but I would ask to be tested for lyme anyway if it were me.
The ANA is a non-specific test. It does not necessarily mean you have a disease. But it does mean that further testing needs to be done according to the neurologist I saw. He also said that many people have positive ANA titers and have nothing wrong with them.
Many of us go through a number of MD's offices before getting a diagnosis of either Lyme or a coinfection or something else entirely.
Lyme is a tough one to diagnose, because the tests are not very accurate in some ways, and many MDs have such a restrictive view of what is needed to make a Lyme diagnosis that many of us would never have been diagnosed at all.
Rheumatologists in particular have a reputation for not 'believing' in Lyme disease except as a short illness preceded by specific symptoms such as a tick bite, a circular rash, and inflamed knees, all easily treatable with a few weeks' antibiotics. You may get lucky and find a rheumy who is more broadminded, but keep in the back of your mind that you may, if none of the other diagnoses pan out, need to look further into Lyme.
Most MDs use Lyme lab tests by the standard 'big labs' like Quest and LabCorp, which are fine organizations, but they report on fewer points (called 'bands') on the tests which would indicate Lyme. MDs who specialize in Lyme (sometimes casually called LLMDs, or Lyme Literate MDs) often prefer a lab called Igenex, which is held in some contempt by nonLLMDs as being overkill or something. I don't really understand the basis of the beef.
Therefore you can be tested for Lyme by a nonLLMD and be told you don't have it, but in fact you may, because it is a diagnosis made using tests in conjunction with symptoms, and if the tests are unclear and the understanding of symptoms skewed, the diagnosis may be faulty. There is huge controversy in the medical field on this point, with reputations and pride and careers at stake, and the patients are caught in the middle.
After you run down all the other possibilities, and even get Lyme-tested by your rheumy, if you are still coming up without results or just don't feel like you've explored everything you should, then my own next step would be (and was) to find an LLMD and be tested and examined from that point of view.
Some here would also say that they were prescribed steroids, either oral or otherwise, and it had a very bad effect on them because they turned out to have Lyme. Steroids suppress the immune system, and someone trying to fight an infectious disease (which Lyme is), suppressing the immune system would not be not a good thing.
I don't know anything about ANA titers, but wanted to put in a few words for your consideration as you go forward. **I'm not medically trained, so these comments are made generally and as a result of my own experiences and those of others and should not be relied upon as medical advice by anyone.**
That said, best wishes, and let us know how it goes.
I've never had positive ANA, nor do I know how to judge the values.
I have read plenty of Lyme patient testimonies that did state a positive ANA. But no, it is neither diagnostic nor typical for Lyme. It's also not a very specific test.
What I would do is see the rheumy and they should have more specific tests. If those come back negative, keep Lyme in consideration. You can have negative Lyme tests and still have Lyme.
As noted above, lots of us go through a lot of tests/specialists before getting a dx of Lyme, because Lyme mimics other conditions and can cause some weird test results. In my case, I had an elevated SED rate and an abnormal brain MRI. So while the SED rate indicated possible inflammatory disease and the MRI possible MS, the more specific tests came back negative. This caused more time and frustration before my Lyme dx. My Lyme blood screens were always negative, I don't recall a tick bite, no bull's eye rash.
It's stressful to go through so many tests and work-ups, but in many cases it's necessary. But please do keep Lyme in your list. Many docs will discard the notion after a negative blood test, but lots of patients learn the hard way how lousy the tests are!
I 2nd the warning about steroids! I was give oral steroids while undiagnosed. I paid for one week of relief with a huge negative impact on my health. I would not suggest resorting to them until you have a firm dx for a condition they are known to help.
My ANA was negative and I had similar symptoms. I haven't read anything about ANA making lyme WB bands positive. Like others have stated, it doesn't rule Lyme out but it doesn't point to it either. We have been through plenty of vague explanations for our symptoms too, so you are not alone.
I have seen and spoke to people who come up lupus positive bafore and during treatment. The one I spoke to was cured of lymes after 3 months of antibiotics and the lupus test came up negative later on after treatment. So are they linked or is our lymed out body so stressed that all that other stuff surfaces in the meantime?
I also have a positive ana and lyme... My doc sent me to a rhumy and did blood work again now its borderline positive my ana and positive lyme.. I am so confused cuz my ana was 1:640 and now its borderline? but I have been going threw this for 3 years now, bad severe headaches, body pain and so, so fatigue and went to working 12 hrs shifts to 6 hrs shifts, there are times I cant even think straight and get confused,plus there are tmes I don't even want to get out of bed cuz my body hurts and so fatigue? So a positive ana doesn't have anything to do with lyme? I message my rhumy and all he says is he will discuss it when I come in next month... The waiting game stinks and I want to know what is going on with me... But he says all my other blood work is fine.. My anti DNA and smith and my red is really high...
Welcome to MedHelp -- or perhaps you've been here before? Your name seems familiar.
The post you responded to by Chatterbox is several years old and I don't recall seeing him/her post for a while.
I've had Lyme and a co-infection, and have gone through the 'doctor dance' trying to find a doc who could help, so I know it's not always an easy thing to accomplish.
As a general rule, from what I read, rheumatologists as a group are not very up-to-date on Lyme matters, although they think they are. There is a split in the medical community, and 'rheumies' are often on the side of those who believe Lyme is rare, hard to get, and easy to cure with a few weeks of doxycycline.
There are other docs who think more complex thoughts on these matters, and that is how I was finally properly diagnosed and treated. I would suggest you contact the International Lyme and Associated Disease Society (ILADS) for the names of some MDs near you who take more progressive views on the topic of Lyme and its treatment.
I personally went through 20 experienced and highly trained MDs of all kinds, and it was Doc #20 who tested me at last for Lyme. But as she handed me the positive (!) test result, she said so gently, "Oh, but you could not possibly have Lyme...." Whaaa???
It happens that an old friend of mine, a scientist by training, had had Lyme long ago, and I knew it was serious, or would have shrugged as Doc #20 did and done nothing.
The 20 docs I started out with are out-of-date in my non-medical opinion, but there are other docs, often members of the International Lyme and Associated Diseases Society (ILADS), who really DO understand Lyme, how to test for and diagnose it, and how to treat it. I was treated by an ILADS-member MD (he is trained as an infectious disease MD, but it's not the specialty that counts, it's the open mind they have) who is a member of ILADS and takes a more progressive approach than the Infectious Disease Society of America (IDSA) and the Centers for Disease Control (CDC) do toward Lyme.
I am very conservative about things like this, but going to a Lyme specialist who understands Lyme (and its co-infections that the same ticks often carry) was the best thing I ever did. Your current docs may get huffy and refuse to see you again if they know you are consulting an ILADS-oriented MD, so you might want to just go quietly to see the ILADS doc and then decide whether you want to stay with your current docs or go with an ILADS doc. It sounds nutty, I know, but it's a mess the medical community has not yet sorted out. We the patients are stuck in the middle.
To find an ILADS-oriented MD, you can email to
---- contact [at] ILADS [dot] org ---
and tell them what city you are near and how far you can travel to see an MD. They can send you names of ILADS-member MDs near you. If you don't like the first doc you see, ask for another name.
This all sounds crazy, I know, but the medical world is in a mess on this topic. You might consider NOT telling your current doc that you are going to see an ILADS doc for a second opinion, because nonILADS docs tend to think ILADS docs are .... quacks, to put it gently.
If you go to the ILADS [dot] org website, you will see more about the organization, including Dr Burrascano's treatment guidelines, which may be a little outdated now (I haven't checked the date of how recently they were updated), but they are pretty solid as far as I know.
If your current doc knows you are slinking off to see an ILADS doc for a second opinion, your current doc might get huffy, so consider keeping it to yourself till after you see the ILADS doc and have decided which way to go.
If you have copies of your tests to date, take them with you to the ILADS doc. What one doc reads as unimportant may say a very different thing to an ILADS doc.
I was tired and confused and felt like I had the flu AND a hangover 24/7 when I had Lyme, and it sounds like you are close to feeling that way too. I'm fine now, several years after getting properly diagnosed and treated by a Lyme specialist. You will see the term LLMD, which is short for 'Lyme-literate Medical Doctor.' It is not a degree or official title, but instead patient shorthand for a doc who really understands Lyme and how to deal with it and the other infections the 'Lyme' ticks often bring.
LLLMs don't always take insurance (mine didn't), but they will give you a reasonably detailed bill to submit to your insurance company. My insurance paid without any questions at all. The reason LLMDs don't always take insurance is that it costs a ton to employ a billing staff, and to keep their overhead down for patients who don't have insurance, LLMDs often just ask the patients to pay upfront and then get reimbursed if they have insurance. And underlying all this, I think, is that a doc who does not take insurance doesn't have to spend time explaining to insurance companies why the doc does X instead of Y. Dunno. Just a guess.
If I got Lyme again, I would definitely go to an LLMD again. It sounds squirrely, but that's just the state of medicine at the moment. Oh, and nonLLMDs often don't pay much if any attention to co-infections: just not on their radar. LLMDs know better.
Thank you so much... And yes I feel like I have a hang over all the time and feel like crap a lot... I have been hospitalized twice with the same symptoms and they gave me the iv with meds for lyme but said they didn't find anything wrong with me??? (confused) I have had a lumbar puncture done and so many other test and they said things came back fine. Its been 3 years now and so tired of going threw this, I have had strep throat twice, once I was in th hospital and just recently when I went to the hospital and said I have strep and sent me home with meds for that then got the blood work back for lyme and came up positive so again more meds for the lyme... And thank you I will go to their site to find doc near me. So do you know if an ana positive has anything to do with having my blood test for lyme to come back positive? Im loosing a lot of my hair and my hands and arm get numb a lot, Im just tired of going threw all this.. Again thank you :)
A diagnosis or positive test result for ANA is separate from Lyme, and neither test would affect the other.
Anaplasmosis is one of the more common co-infections of Lyme, along with Babesia and Bartonella to name a few. These co-infections might go
unnoticed in many people if they are not immuno-compromised due to being infected with Lyme disease as well, but some symptoms can be troublesome when compounded by Lyme, and there are overlapping symptoms.
One symptom that is severe for many people that have Lyme is fatigue, and it is also a symptom of the 3 co-infections I mentioned, which can make it that much worse.
Sorry for the many updates but can anyone tell me what they all mean? I am so confused with all this? I don't go back to my doctors till dec 18th and pretty nervous... Some people say I can have Lyme disease along with Lupus is that possible to have both? And thank you RobNOrl for the info, I have been dealing with lyme for 3 years now, but my rhumey thinks I might have lupus also?
Each test result should have a 'reference range' for each item, which are the usual boundaries to know whether your specific test result is within the normal (healthy) range or not (infection present).
Different tests from different labs have different reference ranges stated on the test result paperwork, so take a look at those. Any one of them that is close to the 'yes you're sick with this' range should in my non-medical opinion be counted as a positive.
AB means antibodies that your immune system makes, and some of these tests don't look for actual bacteria in your blood, but instead look for your immune system's reaction to the presence of the bacteria. It's like seeing a burglar's footprints in your flowerbed but not seeing the burglar: the footprints means the bad guy's likely been in your house.
I don't know all the ins and outs of these tests (your doc should walk you through them), but here's my understanding (my comment are inside ***asterisks***):
-- P23 AB IgM Present (***positive for antibodies (AB) your immune system has made again the presence of a fairly recent Lyme infection***)
-- P39 AB IgM Absent -- this marker was not found on the test, so it does not support a Lyme infection, but that doesn't mean you don't have Lyme
-- P41 AB IgM Present (***positive result like above***)
-- Lyme IgM WB Int Positive -- this means a likely positive Lyme infection, based on the test results above, and it is fairly recent.
BABESIOSIS test results:
Babesia Igg & Igm AB Profile
Babesia Igg AB <1:10
Babesia Igm AB <1:10
It looks to untrained me that babesiosis likely NOT present, meaning likely no infection with this one.
I would call the doc's office and ask to be seen sooner, so you can get moving on treatment, if the tests are indeed positive. (Remember: I'm not a doc!)
Being nervous is normal when you're possibly ill, but Lyme bacteria also use up magnesium (Mg) in your body, which can make you nervous. You might consider taking Mg supplements -- any variety ending in "-ate" is supposed to be most absorbable: magnesium malate, orotate, aspartate, etc. The American diet is also said to be low in Mg, so when the Lyme bacteria are using it up too, it's easy to get low. I still take Mg every day, even though I've been done with Lyme for several years. I take about 400 mg of Mg per day (half in the morning, half in the evening), and that's about 100% of the minimum daily requirement. If I still had Lyme, I might try taking more, but if you get diarrhea, then back off on the dose, so I read.
Doc as a group are not usually interested in supplements and such, and my Lyme doc was that way: he didn't care whether I took vitamins and supps or not. But I think they were critical to becoming well.
Be sure to take the docs a list of all the vitamins and supps you are taking (both name and how much per day) so the doc can factor that in, tho some could not, as noted, care less.
You say, "Some people say I can have Lyme disease along with Lupus is that possible to have both?"
I'm not medically trained, but my guess would be that yes, you could have them both, but my first thought would be that a Lyme infection may be mistaken for lupus, which is (I think) an auto-immune disease, meaning that your body is turning on itself and needs to be stopped before doing any damage.
The problem with diagnosing someone with Lyme AND lupus at the same time is that to *kill* Lyme, your immune system needs to be up and running strong, but the treatment for lupus is to *suppress* your immune system, because Lyme turns on the body and damages it (an autoimmune disease). There is some thought among Lyme docs that what looks like lupus in a Lyme patient may instead be just Lyme symptoms. If your Lyme doc thinks you should be on steroids, I would quietly get a second opinion from another LYME doc without telling the first Lyme doc that you are doing so. Don't worry, just be aware at this point.
Be aware that there are specialist docs who view Lyme only through the prism of their own specialty. It's like the 'elephant and the blind men' story: one guy touches the elephant's trunk and says that an elephant must look like a snake; another touches the elephant's leg and says that an elephant must look like a tree, and so on.
Docs have the same problem as those blind men: they tend to see only what they are aware of, and rheumatologists may (not always, but may) see an over-active immune response (as in a rheumatic condition) where the problem is really Lyme and has nothing to do with an over-active immune response. That's why you need to see a Lyme specialist.
This is not to say a rheumie cannot be wise and openminded about Lyme, but that is a judgment you need to make. Your rheumie may be wise in the ways of Lyme, but I would want to know (1) what his diagnoses are and (2) what the proposed treatment plan is.
You may then want to get a second opinion before beginning treatment, just to be sure. You don't need to tell the rheumie you are going for a second opinion, so as not to get him all huffy, but get copies of ALL your test results to date and take them to a Lyme doc for a second opinion. It's what I would do. Your rheumie might be wise to Lyme already, but if you are not sure of that, then I would go to a Lyme doc for a second look. Sorry to keep repeating myself, but want to be sure I'm clear (it's been a long week). Docs who are ignorant of Lyme do not know they are ignorant of Lyme.
As a wise man once said: trust, but verify. Let us know how we can help. you can do this!! After all, you found us. :) No one here is medically trained that I know of, so you can't rely on us for medical advice, but we're happy to share our experiences. You sound like you are doing all the right things in analyzing your situation -- you go! -- and keep us posted, okay?
Angiotensin-1-Converting Enzym 55
Ana Ifa Profile
Note (SEE NOTE)
Ana Ifa See patterns
Cyclic Citrullinate Pep IgG <1
Dna Antibodies, Native[Double] 1
There are no normal sayings on there.. His tech sent me the blood work threw a portal and it just has numbers, Don't know what they mean, like where the dna is it says the number 1? But I am waiting for a cancelation to get in earlier to see him.. The lyme I have been batteling for 3 years now and have taken meds 4 times and the last time did nothing really for me.. Been in the hospital 2 times with the same symptoms but worse and got iv meds I felt better for awhile but started all over again, My fingers go numb my knees hurt a lot and when I take deep breaths it hurts and NEVER ever had an anxiety attack but went to the ER and they said I had one, idk why but I did.... And sent me home.. I am going to wait and see what he says and if I do not like what hes got to say or do I will consult a second opinion, thank you for all the info you have given me and taking you time to message me back :) I hope for everyone on here get the help they need because Lyme is a horrible thing to deal with.. And my fatigue has been so, so bad my children say they never hardly see me anymore because when I am home I don't feel good and sleep, unless im waking up in pain threw my whole body.. But the numbers I don't know what they mean and have tried looking this up and cant find anything on them, but I am wondering why my ana ifa came up with the homogenous and at 1:320? Witch I know is only one dilution from the last one I had of 1:640.. And again Thank you for sharing and god bless you <3
You have already been through so much! Don't wait -- find a new Lyme doc *now* -- it could take a while to get a first appointment, so the sooner you are in line, the sooner you see a new doc.
You don't have to tell the current docs that you are getting second opinion, because docs can get huffy if they think you don't trust them ... but you have been incredibly patient and loyal to the current docs, and it may be that they just do not understand Lyme. That is not uncommon -- Lyme is an area of great confusion for half the medical profession. Someday it will be all sorted out, but for now you have to think for yourself, as you already are.
I remember how confused I was all the time when I had Lyme, and how hard it was to think anything through. Just focus on getting an appointment with a new doc. Call soon -- autumn can be a busy time at Lyme docs' offices, because they are loaded with people who got Lyme last summer and are just realizing they are still sick after several months.
Take all the past tests you have and show them to the new doc (but keep copies for yourself). That can tell a new doc a different story from what your current doc is seeing. Rheumatologists look for rheumatic problems, and they truly believe that is what they are supposed to do. But that doesn't mean they are right.
Don't wait. Call and make an appointment with a new doc -- preferably an ILADS-member doc, but there's no test to be sure the doc knows what he's doing -- medicine is an art. But you have to start somewhere.
I remember how braindead I was when I had Lyme --- I could hardly get to the grocery store and back with what we needed and what I had intended to get. Fog brain. So I know how hard it is to organize yourself into a new doc -- but do it! Just do it. You are not being disloyal to your current docs, and you do NOT need to tell them you are getting a second opinion.
They sound very fixed in their ways, and you deserve peace of mind and a new work up by different docs. Just. Do. It.
If you can't manage it, ask a friend or family member to make the call for you. Just. Do. It. You deserve to be well. Sending you all good wishes -- keep us posted!
The lyme I have been batteling for 3 years now and have taken meds 4 times and the last time did nothing really for me.. Been in the hospital 2 times with the same symptoms but worse and got iv meds I felt better for awhile but started all over again, My fingers go numb my knees hurt a lot and when I take deep breaths it hurts and NEVER ever had an anxiety attack but went to the ER and they said I had one, idk why but I did.... And sent me home.. I am going to wait and see what he says and if I do not like what hes got to say or do I will consult a second opinion, thank you for all the info you have given me and taking you time to message me back :)
PS -- Sorry, I had pasted part of your last post at the bottom of what I was writing so I could refer to it as I was typing, but forgot to delete it before I sent my post up above. So just skip the last paragraph -- you already know what it says, since you wrote it. :)
======= and in other news
I just searched online for
--- llmd troy ny ----
and got some interesting possibilities. Go for it!
You're very welcome Jillian. We're all here to support each other: you and everyone else here help me, too, just knowing we're not going through this
alone and these mysterious health conditions can be treated and almost "cured" to the point that you feel well and don't need an array of pharmaceuticals
to help you get by every day with no end in sight. I've heard that a false Lupus reading can come up in cases of Chronic Lyme, but that doesn't
mean you couldn't have both, just that you might not have Lupus. I recently listened to the ILADS doctor who has treated thousands of Lyme cases in
Hudson Valley, New York, give an interview at an Autoimmune conference. Dr. Horowitz has also wrote a book that helped me understand what I'm
going through, and might help you, called "Why Can't I Get Better? Understanding the Mystery of Lyme and Tick-Borne Diseases". He says he
plays a game with his patients and the antibody testing called "Lyme Bing-O", meaning that if just one of the 5 of the Borrellia Burgdorferi specific
bands shows up, there's no doubt in his mind you've got Lyme. You had one of those. They are: 23***, 31, 34, and 83-93. He still operates his practice at Hudson Valley, but I hear he has a very long waiting list.
The rhumy I went to diagnosed me with "fibromyalgia", which is a syndrome and is only a clinical
diagnosis based on symptoms with no known cause or curative treatment, only pain and symptom management. He gave me "Wellbutrin" to help with
the fatigue, and told me to take Advil for the pain. Thankfully, I've got a good LLMD that recognizes that Chronic Lyme is a persistent infection, and it
can be cured. I had only the 23 band present on the IgM test, and he said that that is enough for his clinical diagnosis, based on my symptoms, since
Fibromyalgia and Chronic Fatigue Syndrome can be caused by Lyme, and the fact that I was given a clinical diagnosis with the bull's eye rash 2 years
prior. There is an ongoing and politicized debate over whether these things are going on because of Lyme causing an autoimmune disorder like Lupus,
or there is actually an ongoing infection that can be treated into remission with herbs and ABX, along with boosting the immune system and avoiding
inflammatory foods. I chose to believe that I can get better, and started treatment with an LLMD. I've read of many scientific studies that support
this, although the IDSA and CDC haven't been shown enough evidence to change their way of thinking, as someone dealing with this first hand, I am
optimistic in recovering instead of suffering. I've dealt with fatigue issues during flare-ups of what I believe to have been Lyme's reproductive cycles,
because between each one of these the symptoms I experienced on a day to day basis were progressively worse, and each flare-up was progressively
worse, to the point where during the last one the fatigue was so bad I could barely walk, at times having to crawl to the bathroom from my bed if
necessary, sleeping on the floor halfway through. During each of these flare-ups my EM rash showed up in the exact same spot, in a lightened form,
which doesn't happen for many people, but since I'm stubborn and didn't want to believe I had Chronic Lyme. helped prove the theory of on-going
infection to me even more, I have now been on ABX, herbs, and supplements for 8
months, and am taking IV Rocephin, Omnicef, Zithromax, and Bactrim, along with a host of herbs and supps while waiting on Mepron to become
available to finish off the Babesia. My CD-57 has gone from 59 to 71, which is a start, but the doc says he expects to see a big jump once I'm done with treatment and off ABX for a month or two.
Unless they're an LLMD, most doctors believe what the government and the experts at the field (Infectious Disease Specialists) concerning Lyme say,
about it being hard to get and easy to treat, that there is no such thing as Chronic Lyme, and look elsewhere to help you if you don't currently have a tick attached to you or the rash it just left behind.
God bless. I hope you get the help you need. You are in an area that should have some people (LLMD's) with a higher understanding of this around.
I was wondering the same thing... I came up positive for lyme 3 times and my ana Ifa came back homogeneous pattern of 1:320.. I don't know if I have lyme or lupus... And was wondering if u can have both...
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