Could this be Lyme?

[Shel822]

Hello Everyone,

I'm not sure where to begin. I thought I had Lyme in July 2011, when I saw a red/pink ring on my skin (nothing like I've ever had before). It was on my back, so I noticed it in the mirror after taking a shower. If there had ever been a tick, I didn't see it. I was in Michigan in the summer, and can't think of any specific time where I could have been bitten, but it was a very rural place----lots of woods, tall grass, fields, etc. I would sometimes lie on the ground in my swimsuit to get a tan----also would walk around barefoot. I had flu-like symptoms and headaches around the time when I noticed the ring. I went to a doctor, and he was pretty unhelpful. The ring was gone by the time I saw him, but I showed him a picture of it. This and my description of my other symptoms didn't seem to convince him, but he ordered bloodwork anyway. They never called back about the bloodtest, so I assumed I just didn't have Lyme. I was feeling better by the end of August, and I went on my merry way back to college near Philadelphia. I'd say I felt fine through September and October. Maybe mid-October I started having symptoms that could be described as mental----increased anxiety, some depression, fatigued all the time, etc. I chalked it up to stress and anxiety. Although it was kind of mentally agonizing, I could still function because I was physically alright.

Well, I've been feeling absolutely awful for about two months now. My physical symptoms began in December when food seemed unappealing and it was very easy for me to stay away from Christmas sweets. I came back to college in the middle of January, and it seems that everything has only gotten worse. Not only is food unappealing now, it's actually repulsive. Just talking about it can give me a stomachache. One sandwich can make me full for hours, and my whole digestive system just seems messed up. I feel very, very weak----and even when I can't complain of something specific, something just feels 'not right.' I hardly ever feel 'well.' Sometimes I just lie in bed and feel my heart pound through my chest. A few times, I thought it was a panic attack, and it may very well have been because my anxiety has gotten worse. A few weeks ago, I started getting what I believed to be an eye infection. It wasn't burning/itching, but it felt like I had bruised my whole right eyeball. I assumed it would just go away within a week, but it actually has remained and the feeling goes back and forth between eyes. With this, my vision has gotten a little worse. Not drastically worse, but enough that I sometimes put on + 1.00 strength readers to help me concentrate and see words more clearly. Lights also seem brighter than they used to, but I'm not sure if that's in my mind. I also get a fluttery/twitchy feeling on the top of my left foot. It is never on my right foot, only the left. This also started about a month ago. My chest hurts sometimes, and once in awhile I cough up clear gunk. (As a side note, I used to smoke cigarettes with no problem, but now trying to smoke them makes me nauseated, light-headed, and weak.) I get more headaches than I used to, and it's hard to focus on things. My schoolwork has definitely been affected by whatever this is that I seem to have. It's only dawned on me within the past few days that this could be the Lyme that went undiagnosed in the summer. I'm really not sure however, because a lot of these symptoms could be anything. I don't know anybody who's ever had Lyme. It's confusing because these symptoms have built up slowly over time, so it doesn't seem like it's a sudden illness, whatever it is. I just think back to the way I felt a year ago, and it was so much different----so much better.

Sorry this was sort of long-winded. If anyone can help me determine whether there's a possibility this could be Lyme, that would be greatly appreciated. I'm at the end of my rope and am going to start seeing doctors pretty soon . . . I know that doctors and suggestions of Lyme don't always mix well. But if there's a chance that this could be Lyme, I want to push for it.

Thanks again, and good luck to all of you as well.

[JackieCalifornia]

My LLMD didn't use doxycycline -- I think there are other suitable substitutes that don't have the stomach irritation issues of doxy.  But it is still used.

[Ricobord]

Your symptoms and progression sound like classic Lyme.  It's apparently common for people to test negative in the month after a tick bite as it can take antibodies to form, but there are also a percentage of people who are sick with Lyme who don't meet the CDC criteria for a "positive" test, which is really unfortunate.  Lyme is a clinical diagnosis, which means they factor in symptoms and history and use test results to support a diagnosis.  Unfortunately, most doctors don't know how to do this and assume the tests are 100% accurate, which they are not.

Based on the rash and your exposure, you should have been treated with Doxycycline.  Definitely get a copy of those initial test results and then find an Lyme literate doctor ASAP.  The sooner you get started on antibiotics, the sooner you'll get better.  Don't wait until it gets any worse. Believe me, it's hell!  (Most of your symptoms are the same as mine.)

Here's a link to a document intended for other doctors, but also helpful in understanding the disease.  It includes a symptom list.  http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

[JackieCalifornia]

Welcome to MedHelp Lyme --

You give a very good description of your symptoms and history -- this will be very helpful going forward.  I'm not medically trained, nor is anyone here that I know of, but happy to give you reaction and comments and suggestions.

You are one of the few to actually see the round red rash -- docs who are not familiar with Lyme (and the one you saw seems to fit in that category) will always require that kind of rash and/or seeing a tick before they will consider Lyme ... but fact is that many, many of us never see the tick (which is not big like a dog tick, but tiny like a poppy seed) and never see or have a rash, but can be very ill with Lyme and/or other infections the same ticks carry.

You were SO wise to take a photo of the rash!  Keep that photo, and show it to your next doc.  'Show and tell' is important.

That doc should be ashamed of himself for not reporting the test results back to you, and I suggest you call his office and ask that they send you copies of ALL the test results, negative or not, "just for my records."  I think by law they have to give you those copies.

Here's the reason why:  the tests are not very accurate, and they need close interpretation by docs who know how to read them wisely.  Most docs don't fit in that category, but some do, and that is why the tests might be very good to have.  

Here's more reason why:  You are most likely to get a strong positive on the tests soon after infection, because the more time that goes by after the bite, the reaction of your immune system to the bacteria will decline.  It is that *reaction* that the tests are measuring, and sometimes if it's been a while since you were infected, the tests will come up negative.  And even early on, the tests are not that accurate, and a good doc will know that and not take the test as the last word -- the test results are helpful, but what really counts is your history (your rash, your having been out in the woods) and how you are feeling now.  

Get those test results if you can -- ALL the pages, not just a few -- and then take them to a Lyme specialist.  Lyme specialists can be any kind of doc -- an internist, a GP, an immunologist, an infectious disease (ID) doc, etc. -- and much more important than their named specialty is that they have an open mind to Lyme, which it doesn't sound like your last doc had.

You will see the term LLMD, which is not an official title, but is patient slang for a 'Lyme Literate MD', meaning a doc who knows the tests are lousy, who recognizes the patterns of your symptoms, who can make an educated guess about what co-infections you might have, and who knows that Lyme needs more than a couple weeks of antibiotics, because of peculiar characteristics of the Lyme bacteria themselves.

You don't say where you are located, but if you will post back with that data, we can perhaps suggest some ways to located an LLMD.

Like I said, I'm not medically trained, so this is just a suggestion, but you might want to try taking magnesium supplements (and be SURE to tell the doc you end up with what your symptoms were like before you started the magnesium).  Any formulation ending in "-ate" is said to be most absorbable.  I take a type that has magnesium malate, orotate, and aspartate in it.  The reason I suggest this is that Lyme uses up magnesium in its reproductive process, and it is magnesium that carries messages between your muscle cells, including your heart muscle.  Low levels of magnesium don't show up on blood test until they are VERY low, so you might give it a try.  It sure helped me.  I personally take 400 mg twice a day and have no side effects, but it sure helped my muscles, my heart rhythm AND my sense of well-being.  Just a thought.

"I know that doctors and suggestions of Lyme don't always mix well."  Your are exactly right about this, which is why finding the right doc is so important.  And those docs ARE out there, it just takes a little searching around.  Let us know what area you are in, and we'll see if we can find some possibilities for you, okay?

Take care, hang in there -- good for you for thinking this through.

[Shel822]

Also, I forgot to list joint pain . . . I have that in my knees and hips, but I have it anyway, even before I thought I had Lyme. I'm not sure if this is important information or not, but might as well give it.