Aa
Aa
A
A
A
Close
Avatar universal

Not sure if I have Lyme Disease

I started to have back pain about two months ago in the area around a lypoma that is right over my spine. At the time I figured it had to be from the lypoma. After a few days of the pain in my back I started to feel an odd feeling in my left foot. Over the next week it would sometimes be in both legs, and my left arm. The pain in my back would be sometimes just in the area of the lypoma, or up into my neck and head. Not really a headache but more a pressure.
   I went to my doc about things and was told that it would be odd for the pain to be from the lypoma but I should see a surgan about having it removed. Some blood work was done, and it all came back normal so I was directed to see a neurologist about the other fellings I was having.
   The surgen said the same thing that my reg doctor said. The neurologist said that it could be the lypoma,my neck or my head. I will be having a 2 hour MRI on the 20th.
   I went to my Regular Doctor for my physical this past Monday. He made comment about me being tested for Lyme Disease. When i got home I started looking things up on line and found that most of what was going on with me looked like this could be it. However the test was normal. I do know that this can be the case even if you have Lyme disease.
   Now that most of my history is out of the way I can start my questions. If it is lyme disease will anything show up on the MRI? Also about 4 years ago I did find a deer tick on me, and was tested at the time. The test was normal. could I have gotten it then? I have had joint trouble ever since my teen years. I had tendonitis in my hips, shoulders, and jaw. I am now 36. Pain has been part of my life ever since I can remember, so when I have it I just deal with it and move on. I honely don't really take much note of things anymore. But I have over the last few years felt that I was having alot more joint trouble then I should for my age. Also i did have trouble with my lymph nodes about two years ago. I lost alot of weight in 3 days and my lymph nodes were all large. Their again I  went to all the right docs. went thru the cancer scare. Just to be told that everythign was normal and to keep an eye on things. Everythign went back to normal after a while. Could this have been from lyme Disease also?
  I am now feeling alot of pain all over my body. Sometimes just one place. Sometimes meny at once. There are days that it is hard for me to even move when i first wake up. I also have nausea, Numbness and tingling in my hands, arms, feet, legs, back, and face. fatigue. I fine myself beeing more short temperd with my kids. Its also harder to focus and I question my memory.
   Is this Lyme disease? How long might I have had it? What should I do next?
  I hope this all makes sence. I never posted on a site like this before. I hope I did things O.K. Thanks for any advice anyone can give .
6 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Yes i will keep you posted. Ya the normal MRI is a good. With what is going on with me the doc even said he was afraid he was going to be telling me I had MS, So he was happy he didn't have to give that type of news. He did wish that he could have pointed me in a better direction. Thanks for everything , Ryan
Helpful - 0
Avatar universal
Thank you for letting us know -- best wishes, and keep in touch -- having a normal MRI is a *good* thing!
Helpful - 0
Avatar universal
I had my MRI today. He also did a EMG and NCV. The MRI was normal. However the other test did show I had some nerve damage. He said that lymes is something that I should look into more. I will be calling the other doc back about what else we can do.
Helpful - 0
Avatar universal
sorry, not within my understanding.  you might look online at the test manufacturer's website for what their abbreviations mean, or ask a pharmacist or your doc.
Helpful - 0
Avatar universal
i did get a copy of my Lyme test  in the mail today it reads:
Description         result     range      units
ana direct           negative    negative
ra latex turbid.    7.8       0.0-13.9    iu/ml
lyme ab img interp., eia
lyme ab igm interp., eia
lyme ab interp., eia
lyme ab quant, igm <0.91   0.00-0.90 index
lyme igG/igm ab    <0.91   0.00-0.90 index

Can anyone brake this down for me? What type of lyme test was this? I know their are different types Thanks again
Helpful - 0
Avatar universal
Welcome to MedHelp Lyme.  You are asking good questions, and that's what you should keep doing till you get answers that make sense to you.

No one here is medically trained (that I know of), but there are a bunch of us dealing with Lyme that may have suggestions for you in figuring out what's up with your symptoms.

It's good that you are observant about your symptoms.  You might consider keeping brief notes about your aches and pains and so on, because it might be useful to a doc in reviewing your history.  Some docs think it's obsession, but others are glad for the data.  I see your note that you 'don't really take much note of [aches and pains] anymore.'  I'm the same way, and that's the best reason to keep notes -- to give accurate data to a doc in the future.  

The tests that are used by most docs are not very accurate, but the docs tend to rely on them as gospel truth.  A good doc, by contrast, will use the tests as hints and indicators, but does what old time docs did:  talk to the patient, ask about possible tick bites in the past [as you had], about any rashes seen, about how you feel from time to time, do a physical exam, and so on.  Your regular dr sounds like he might be one of those good, careful docs.

You will see the term "LLMD" in these conversations about Lyme, and that is patient shorthand for 'Lyme Literate Medical Doctor', meaning a doc who takes both a more progressive view of lyme and also does doctoring the old fashioned way described above, taking a history, asking about exposure and symptoms, and so on.  Tests are helpful to an LLMD, but are not the final word.  Your regular doc may be able to perform this function for you, because "LLMD" is a point of view, not a diploma.

If your doc does understand about Lyme (and the fact that he even mentioned it is a VERY good sign), then he may well be able to guide your course of action to determine what is going on.  He may send you to some specialists, or not; you'll have to play it out to see.  If you feel you reach a dead end with him, then it's time to look for another doc, but deal with that later if it comes to that.

The symptoms you describe are pretty much all things I have read or heard from others with Lyme.  That doesn't by itself mean you have Lyme, but given your history of a deer tick bite and the symptoms since then, well, I would chase it down to be sure.  Something is causing your symptoms, and points to your regular doc for thinking of it.

I'm not medically trained, but here is my take:

--an MRI will probably not show anything related to Lyme, but it will rule out other ailments, so having it is not itself a bad thing.

--neurologists are well known as a group in not 'believing' in Lyme as a serious, longlasting disease, so don't expect too much Lyme talk out of him.  You could, if you want to, ask him point blank "Could this be Lyme?" just to cover all the bases.  I would imagine he will say "No."  Don't take that as the last word.  

--always get copies of ALL tests done on you from here on out. I think by law docs have to give you copies if you ask for them, and by all means, DO ask and DO take them with you.  Asking later has, in my experience, gotten me incomplete copies and a lot of eye rolling from the file clerks who see no reason to stand at the copy machine to make me happy.  So ask for copies every time, don't wait till later.  Take those copies to all your later doc appointments (I have mine in a binder), because you don't know when a doc will be interested in something an earlier doc was not.  Keep your OWN copies, don't hand them over and risk not getting them all back.

--your symptoms of migratory joint and muscle pain could be from Lyme.  Swollen lymph nodes could be from a variety of infections that sometimes come along with Lyme:  bartonella comes to mind.  The ticks that carry Lyme very often also carry other diseases that muddy the symptom picture, and a good doc will, from hearing your list of symptoms, know what other diseases (referred to generally as 'co-infections) to test for.

--being cranky can be Lyme-related, because Lyme inflames the brain and nerves, which will make anyone out of sorts.  Lyme also affects the endocrine system (thyroid, etc.) and that can affect mood also.  

--fatigue, tingling, memory issues:  yes, those can be from Lyme also.

Your questions:

--is this Lyme?  dunno.  but you are asking the right questions, and I suggest you keep asking until you get some reasonable answers.

--how long have you had it?  hard to say.  I think I got a mild case that just made me tired a lot and made my feet hurt, and then a few years later I got really sick, probably a re-infection, and that was finally after 20 doctors diagnosed as Lyme and babesiosis (like malaria, but carried not by mosquitoes but by Lyme ticks).  Doesn't matter how long you've had it; what matters is finding out now what you've got so you can get it treated.

--what should you do next?  Get the MRI, just so you're sure there's nothing there (and get a copy of the results for your records).  Then go back to your regular doc, who mentioned Lyme as a possibility, and talk to him about testing again for Lyme and what tests he would use.  

There are some issues to deal with, however:  

     (1)     the usual tests (Western blot and ELISA) are not very accurate -- there are other tests done by IgeneX labs in California that LLMDs use, because the tests look in your blood directly for DNA bits of the Lyme bacteria instead of looking for antibodies your immune system makes against the bacteria ... and if it's been a while since you were initially infected (as it sounds you are), then your immune system may have gotten bored and stopped making antibodies, so the W. blot and ELISA tests may be negative despite a persistent infection.

     (2)     based on your symptoms, your doc may order tests for additional diseases carried by the Lyme ticks:  babesiosis [like malaria]; bartonella; ehrlichiosis; and a few others.  These diseases need to be tested separately from Lyme, and often require different treatment.

If your regular doc does not go down these paths, then he may not be a doc I would continue to see for Lyme, but you don't need to tell him that -- you may need him again in the future, because many/most LLMDs require that their patients have a 'regular' doc to treat their sprained ankles etc.  Lyme docs only do Lyme & coinfections.  It's always good to have a regular doc available.  If you need help finding an LLMD in your area, let us know and we'll see what we can find.  

You also say:  

--"I hope this all makes sence."  Yes, this makes perfect sense; you have given valuable information and should repeat it your doc.

--"I never posted on a site like this before. I hope I did things O.K."  You did great.  You've been through a lot already -- and you deserve to feel better.  Let us know how you do, okay?
Helpful - 0
Have an Answer?

You are reading content posted in the Lyme Disease Community

Top Infectious Diseases Answerers
1415174 tn?1453243103
CA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods