Welcome to MedHelp --
I think you are asking all the right questions, and if your upcoming doc visit doesn't feel totally satisfactory, I would encourage you to find another Lyme doc for another opinion. There is much confusion in the medical field about Lyme -- how serious, how widespread, what symptoms, what co-infections [other diseases the Lyme ticks also may carry], how to treat it with what meds and for how long. That pretty much covers all the possibilities, and if you don't get answers satisfactory to you from the first doc, then see another one.
Why all the confusion? Lyme is a relatively new disease, and the docs who first identified it are still practicing medicine. They are firm in their opinions about Lyme being rare, hard to get, and easy to cure, and other docs tend not to want to contradict the senior docs' views ... but that way lies misery. There are more progressive thinkers in the Lyme field, and I hope the doc you are going to see soon is one of them. See what happens, and let us know if you would like feedback and suggestions of next steps. No one here is medically trained as far as I know, but we've all dance with Lyme and its little friends, so we have a backlog of experience to share if helpful.
It took me 20 docs of all varieties before one finally ran a Lyme test on me -- it was positive, but the doc dismissed the possibility of Lyme because I didn't look sick enough. Riiiiight. Docs may tell you 'we don't have Lyme here', but Lyme is pretty much everywhere, and spreading. The docs who first recognized Lyme a couple of decades ago are senior now, but still practicing and teaching -- and all their offspring are out in the world carrying with them the early impression of Lyme. No one anticipated how serious Lyme can be and how long and profoundly it can affect those who have it, but there is another rising group of docs who think broader thoughts than the early docs.
All this is background for your upcoming doc visit -- it's often hard to tell how up to date a doc is until you've seen him/her and can then think through what they have said and how it fits (or doesn't) with your own views of Lyme and what to do about it.
In a nutshell, the earliest docs to study Lyme (just a few decades ago) thought it to be an annoying ailment but one that was not particular troublesome. Lyme is a bacterial infection, and antibiotics are the artillery of choice. Thus the initial treatment for Lyme was a basic and well known antibiotic, doxycycline, given for a few weeks -- the same sort of dosing given for an ear infection or other moderate ailment. At that point, no one knew that Lyme has tricks to preserve its viability despite a course of doxy, and it only in more recent years that other docs have recognized that while doxy is useful when given shortly after infection, it quickly becomes ineffective because of the ability of the Lyme bacteria to hide in slimy shields they create in the body, called 'biofilms'. The Lyme bacteria can hide from the human immune system by tucking away in the biofilms, but they are still there prospering.
Everybody's symptoms are a bit different, and your list above are not out of the mainstream. A wise doc knows this and doesn't try to nitpick about the details: the big picture of the ailment(s) should always be kept in mind.
There are two kinds of tests commonly used in diagnosing Lyme: the older and less reliable tests are called ELISA and Western blot, but good Lyme docs use them not as the final word but as additional data, because the tests are not foolproof: they rely on the body's immune reaction to the presence of Lyme bacteria, and the Lyme bacteria have the ability to suppress the activity of your immune system. If the ELISA/Western blot tests are positive, they are fairly reliable; if the tests are negative, they could be wrong. NonLyme specialists don't understand that difference, and tend to go strictly by the positive or negative test result coughed up by the lab. That's one reason an LLMD is important: s/he knows better than that.
There is a completely different test called PCR: polymerase chain reaction. It does not rely on your immune system reaction (see above), but looks instead for bits of Lyme bacteria DNA (genetic material) in your blood. That is direct evidence of infection not affected by your immune system (as ELISA/W.blot can easily be affected).
Mostly only LLMDs use the PCR tests, because nonLLMDs don't see any need for tests other than ELISA/W.blot.
About whether multiple sclerosis would get worse if you took antibiotics, I would guess not, but confirm it with your doc. MS is an autoimmune disease, where your body mistakenly attacks itself instead of invaders. To my vague understanding, MS meds function by suppressing your immune system, and that is *not* a good thing for someone with a bacterial infection like Lyme. That's another reason to see a doc who understands Lyme and how to test and assess for it -- an LLMD is less likely to give the wrong kind of meds [for bacterial Lyme infections vs autoimmune MS ailments] because of ignorance. Few docs have Lyme on their radar except as an inconsequential infection that is (altogether now) rare, hard to get and easy to cure.
You ask: "Is false negative for lyme very common?" Depends on which test is used. The older, more basic ELISA/W.blot tests that rely on your immune system can give a false negative because the immune system can be suppressed and show a false negative; the more recently created PCR tests are less likely to produce a false negative because they do not rely on your immune system as the basis of the test result.
The medical world is largely messed up about Lyme and its co-infections (also carried by the 'Lyme' ticks), and until the older docs realize that 'rare/hard to get/easy to cure' is wrong, there will still be controversy. I would stick with an ILADS docs or one who follows ILADS approaches, because they are more rigorous in their approach.
Lyme is quite common and spreading everywhere, so it's not something that will go away any time soon. My Lyme and babesia treatment ended about 7 years ago, and I am fine. I just know that if I start feeling odd the way I did with what turned out to be Lyme and babesia, I'll head straight for an LLMD (while remembering that there is not one single set of rules or approaches and LLMD must follow: it's an idea and a general approach). If you see a doc who claims to be a Lyme specialist, still be skeptical as you see what tests are run at what labs and how the doc reacts to the test results. Lyme isn't going away any time soon, so we'd best learn to deal with it ... and likely more than once in a lifetime.
It is important to see an LLMD for co-infections. The majority of co-infections don't show up on tests but a good LLMd will give a clinical diagnosis. They are very common and require different medications.
Thanks for you reply. I'm looking into LLMD's in my area. The day to day change is really what's frustrating, today it was like hour to hour. I felt really crappy for most of the day but then there were a couple hours where mentally I felt great. One of my biggest concerns is my vision. I started to get blurry about a month ago I freaked out and went to an optometrist and ophthalmologist. Both told me I had 20/20 and that if they gave me a prescription it wouldn't do anything. The ophthalmologist told me that my optic never looked fine and that there was nothing wrong with my eyes. Is that common? also lately they have felt gritty and watery from time to time. Have you heard much of that with lyme? I really appreciate your responses. I feel like half the time these threads are never finished and no one knows what happened to the people, so I'll keep you posted.
Did we mention that ILADS has a referral function to find an LLMD? I don't think there is a test the docs take to join ILADS [International Lyme and Associated Diseases Society, mentioned above here -- they have a website], so it's possible you'll get an oddball doc, but get another one if you don't like the first one. The email for a referral is --- contact [at] ILADS [dot] org --- tell them what area you live in ("near Topeka KS" or whatever) and how far you can travel. If you don't like the first doc, ask for another referral from ILADS. (I haven't used the referral service myself [I found an LLMD before I knew about ILADS] but if you have any suggestions about how to use them, pls let us know.)
So glad you saw an ophthalmologist! I had been through ~20 docs of various kinds trying to find a diagnosis and then a Lyme specialist, and I had become expert at apologizing to docs for having Lyme or thinking I had Lyme. I was pretty beat down by the time I finally found an LLMD and got diagnosed, and then when I went to an ophthalmologist for my annual appointment, I told him I was being treated for Lyme, expecting to get the too-common dismissal, and I expected to get the usual eye-rolling routine from docs who don't 'believe' in Lyme.
To the contrary, ophthalmologists are generally *very* aware of Lyme and the problem that it is! I was shocked -- and very happy to have some understanding from a serious doc. If your visit to the ophthalmologist gave you similar comfort, that's good! If you are unsure, then ask the doc, or send him a note asking your questions about gritty and watery eyes. If he wants to see you again, he'll say. But you are entitled to clarification -- esp. since 'Lyme brain' makes it hard for all of us to think through and remember stuff sometimes. It sure did that to me. (Good news is that Lyme brain it goes away when Lyme does.)
I don't know what the signs are to watch for with the eyes, and if your doc didn't spell that out, it's a fair question to send a note or leave a message -- I'd be more inclined to write a short note and mail it -- that seems to get more attention, but that's just me.)
It's good that you have some good hours from time to time -- memorize that feeling, and be happy whenever you feel it -- it means your body is still operating like it used to, and when the infection(s) are gone, feeling good comes back. When my treatment was over, I wasn't magically well and chipper like I used to be, but it was because Lyme is a big battle for your body to deal with. Like after running a marathon or climbing a mountain or having any major illness, it's hard going, and when it's done, it takes a while to recuperate. Be kind to your body, eat well, sleep well, and even have a sympathetic 'chat' with your body like you would with a sick friend -- it might sound silly, but it helped align my mind and body and feelings in some way. My mantra was "It's not me -- it's the bugz" -- said over and over in my head. :)
One thing that helped me a lot was taking good quality vitamins and also magnesium supplements. My Lyme doc wasn't much interested in diet and vitamins, but I figured it wouldn't hurt. I took good quality multivitamins every day, and I took magnesium (Mg) supplements, because Lyme bacteria apparently use up Mg in the body. Any kind of Mg that ends in "-ate" is (from what I read) most absorbable by the body: Mg malate, citrate, orotate, aspartate, and a few others. (I also read that commonly sold combinations of magnesium and calcium is not a good choice -- unclear why, but I stayed away from them.) I've been well for ~7 years now, but I still take Mg everyday: it seems the American diet doesn't have much Mg in it, from what I read.
Okay, enough from me tonight. Keep us posted, and take care --
Hi scaredstraight92. You are me in 1992. I have all symptoms you have in addition to some joint pain in spine and toe swelling. I then noticed a thick coating on my tongue that I know now was candida. This occurs when your immune system is compromised or perhaps fighting this lyme bug. This fungus caused a severe colitis in me which was misdiagnosed as Chrohn's disease. The gasteroenterologist put me on high doses of iv steroids to treat chrohn's. All the symptoms you have got 100x worse. Steroids weaken your immune system. After a month in the hospital they told my wife I have some type of rare cancer and I just discharged myself. To make a long story of misery end. Get treated by a lyme literate MD asap. It took 4 years for me to get a diagnosis of lyme and the doctor found me, not the other way around. He saved my life but I have little quality now. I was misdiagnosed with Chrohn's, ALS, post viral syndrome, and more. I guess that is why they call lyme the great imitator.
This reply is to sick2long268...
I have been diagnosed with disseminated Lyme's disease and did test positive on my first test but I also have the same gallbladder symptoms and ejection fraction you were experiencing when you posted on medhelp.
I have sent you a private message in the hopes that you will respond. My heart goes out to anyone with Lyme's disease... but I'm hoping to hear back on the gallbladder issue and whether or not it was resolved for you. Thank you in advance for responding... I know it's been a year since you last posted