Lyme Disease Community
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Avatar universal

how do you know if you have lyme disease

HI!  i haven't been here to the lyme board, but thought i ought to drop by and get some opinions.  i have wanted to be tested for lyme disease for a number of years, i've even asked about it, but haven't had it done yet.   i'm 48 years old and have been struggling with a number of health problems for awhile---both physical and mental.    i was bitten by a tick when i was 7 or 8 years old.   i don't know if i got sick or not--too many years ago to remember, and i was bitten in the nether regions, so i wouldn't have seen a rash if there had been one.

i have been battling so many seemingly unrelated problems over the years---with a definite increase in symptoms starting about 11 1/2 years ago. i have low thyroid, secondary adrenal insufficiency, fibromyalgia, arthritis, tendonitis, neck pain, anxiety, depression, OCD, i've had orthoscopic surgery for arthritis on one knee and carpal tunnel surgery on both wrists.  the doc just x-rayed my hands and feet last week and could see arthritis in my fingers and also in the large joint of both big toes.  i have muscle pain and bone pain, headaches,  a ton of floaters in my eyes and tinnitis.  i am often sensitive to bright light and loud noises.  i have hypogycemia and a very irritable badder.  i have pretty bad GERD and now it looks like i could have eosinophilic esophagitis.  i have had to have my esophagus dilated 3 times in the last 4 years--i have trouble swallowing and food gets stuck.  i developed chemical sensitivities when i was pregnant with my 16 year old.  i have started getting neuropathy.  most recently in one of my fingers--the pain is gone and the sensation in my skin is coming back.   i had MRSA a couple of years ago and ended up with some pretty bad thrush in my mouth and esophagus while i took the MRSA meds.

i have fatigue that is getting progressively worse--i am usually shot by 3 o'clock in the afternoon.  i wake up in pain and have to sit and wait for the pain meds and stimulant to kick in so i can function, then i have to have plenty of pain meds so i can even get comfortable enough to get to sleep at night.   i have 9 kids and two step kids.  my oldest is 28 and my youngest is 7.  i don't feel like i am a good mother anymore and feel so bad that i just don't have the energy to do much of anything anymore.  i have twins in college---- they turned 20 today.  it is so nice when they are home because they take over most of the cooking which is a big help!

i have an appt. with a new endocrinologist in 2 weeks--the original one i saw didn't give me need-to-know information.  i went to a rheumy once---and cried on the drive home and never went back.  i went to a neurologist once, and he told me i had restless legs and said i was addicted to pain meds---i tried to not take my meds that night and the pain got so out of control that i ended up having to take more medication than normal and it took hours to get the pain back under control.

lyme disease seems to be so politically charged----and it sounds like it isn't easy to test for.  i have two sons that have had alot of emotional problems over the years--and they are my only children that have also been bitten by ticks.  one of them has been bitten twice---and both times we had to take him to the ER because we could not remove them ourselves--one of them was so bloated it's legs looked like little hairs aginst it's body---so i figure he had had it for several days.

i've rambled long enough----but i could really use some input here.
thanks in advance!  
9 Responses
1692704 tn?1307211780
Lyme mimics so many other diseases it is very difficult to know if you have it.  You are very wise to post your question here as I am sure someone can really help point you in the right direction.  I would suggest seeing a Lyme Literate MD to be evaluated for Lyme disease.
1094370 tn?1317134825
Hi Kevieb:

I'm no expert, but I would certainly say that I have read that all your symptoms could be related to Lyme Disease.  Like Ree said, Lyme mimics many other diseases.

I was just DX in January with Lyme.  I had my gallbladder removed a few weeks before my lyme symptoms went crazy!  Having my gallbladder removed, apparently stirred up the lyme activity that my immune system was no longer able to control from the major surgery.  Also, my LLMD believes that my gallbladder probably went bad because of the lyme.  I know it sounds crazy, but gallbladder disease does not run in my family, I am very fit and I try to eat as healthy as possible...

Anyway, although I don't have arthiritc symptoms, I have the vibrating/tingling issues more. I used to have numbness in my face and feet/leg, but fortunately (Thank you God), the numbness went away after starting my antibiotic treatment.  I've had many other symptoms but these are a few.  Oh....anxiety....REALLY BAD!!!  Had gotten much better since starting treatment, but I still have my moments.  

Also, I see your note on the GERD.  When my gallbladder was acting up, my GERD was HORRIBLE!  Nothing and I mean nothing would control it.  I was on double doses of 40 mg of Prevacid a day.  It did nothing.  My GI told me I has gastroparesis (because my digestion basically stopped) for FIVE MONTHS before testing my gallbladder.  Once I had the gallbladder taken out, I was SO MUCH better.  When I started my antibiotics, they messed with my stomach and gave me heartburn for a while, but my digestive system seems to have adjusted because now, I only have to take a Zantac every now and then.  So, if you haven't had your gallbladder checked, maybe that might be something to look into.  Lyme can attach to and damage the organs.  I my case, I am sure that is what happened.

Now, don't go to a regular doc for testing.  Look up an LLMD and go there.  I went to a regular doctor who tested me for Lyme at a regular lab and it came up negative.  Finally a year later and a billion dollars worth of testing for MS and other stuff, I tested positive for lyme and a co-infection.

I wish you the best and please keep us updated and write back if you need help finding an LLMD.  JackieCA on this forum is super knowledgable on all this stuff.

Avatar universal
i have a set of twins that just turned 20 years old---and my GERD symptoms started when i was carrying them.  i have always been pretty sure that i developed a hiatal hernia when i carried them.  i got copies of my medical records from the surgeons office----the records and reports from my scopes.  when i had the second scope, the doctor said i had a small hiatal hernia---but he never told me---so i had been right all along.  i just have to bend over when there is food in my stomach and up it comes.  sooo----my GERD symptoms are one thing i actually don't think are caused by lyme disease---if i have it.  however, i think it could make the symptoms worse.  i hate taking the PPIs for it and have fought aginst taking them for years-----until the third scope showed gastritis, esophageal reflux, and the eosinophils in high numbers.  doc says as long as i am on hydrocortisone i have to take the PPI.  just taking a deep breath in the morning sometimes can cause stabbing pain in my stomach.  

how do i find a LLMD?  i live in a small town in southern idaho-----mid-way between salt lake city, utah and boise, idaho.  we do have a chiropracter in a town about 90 miles away that has kind of made lyme disease
Avatar universal
Sorry to hear about your suffering ... and suffering it is.

You are right about the confusion in the medical community regarding Lyme and other tickborne infections (aka co-infections).  Many of us have been through the mill finding an MD who sees the bigger pictures.  You mention having seen an endocrinologist, a rheumatologist, and a neurologist.  These are specialities well known as not having a progressive (meaning broadminded, up to date) view of Lyme+, so I'm not surprised that you have not made progress if indeed you have Lyme+.  I went through ~20 MDs, including the types you have seen, and no results -- except for one, who tested me for Lyme, got a positive (!) result, but blew it off because I didn't look sick enough to her to have Lyme.  Meaning:  you are not alone.

Good luck with the upcoming appointment.  Let us know how it goes.  Because 'LLMD' is not an official designation or type of doc, no MD will call him/herself that -- so you have to see the 'official' types of docs like endos etc. as you are doing, and only through trial and error will find a doc who understands Lyme+ like an LLMD.  You don't say what area you live in, but if you would let us know generally (like "Columbus, Ohio"), we might be able to help you find a doc who leans to the LLMD side.

I'm not medically trained, but I have heard all the symptoms you list above from others who have had Lyme+, or had them myself.  Everyone is different, and the bacteria are sneaky little creatures that interact with each human in different ways, which just confuses the docs even more.  There are good docs out there, and I would encourage you to find an experienced LLMD and have a work up for you and then for your children.  Keep trying as you are, and hang on.

Let us know how you do and if we can help further.  Best wishes to you and yours --
Avatar universal
you know, i never mentioned the tick bite to any of the specialists that i have seen.  of course, the neurologist didn't even listen to half of my symptoms---and i had them all written down.
Avatar universal
I never saw the first tick that got me ... and never had the bullseye rash either, but then again, many of us don't.  Among the 20-odd docs I saw was a neurologist, who after listening to me and having me walk toe-to-toe and close my eyes and touch my nose, told me I was fine, opened the door to his office, and shouted down the hallway to the receptionist (and all the people with canes and walkers in the waiting area):  "No follow up appointment for this one."  So you're not alone in that regard.

I had other similar things happen, and so have many others here.  Don't be surprised, just be stubborn and keep going till you find a doc who takes you seriously.
1773941 tn?1331676759
Hi, I'm just jumping on here because I saw you might know LLMDs in certain areas.  I was diagnosed with MS 10 years ago, but know that Lyme can mimic this. Am gathering information to see about getting tested.  I live in Pittsburgh, PA.  Just wondered if you know of a doctor in this region.

Thanks, Nicoal
Avatar universal
Sorry to be so long in responding -- been having computer problems.

Good for you for looking out for yourself!  I'm in California and don't know any LLMDs elsewhere, but here is what I would do:

1 -- email to

                   --   contact   [at]    ILADS    [dot]    org  --

and request names of docs in or near Pittsburgh (and even tell them about how far you can travel, so they don't give you a name that's too far away)

2 -- repost your request as a new message thread here, since your note attached to this email thread may not catch someone's eye who could indeed answer your question.  There is a green bar near the top of this website that says  "POST A QUESTION".

Click on that and make a message titled something like 'need LLMD near Pittsburgh PA' -- I think this website will send you an email when a response is posted, but in any event, check back and see what may have been posted.  

To protect Lyme docs from harassment by unfriendly other docs or medical authorities, we try NOT to post any MD's name here in public, but a 'private message' can be sent through this site that is directed only to you.  

If you have a private message waiting for you, there will be number like "(1)" [for one message] near your name.  I don't have an example of that in front of me so may not be saying it right, but keep watch for it!  

Keep us posted on how you do and how we can help -- best wishes!

1 -- as mojogal says
Avatar universal
oops, sorry, the "(1)" indicating a message waiting for you will be next to "My MedHelp" at the very top of this webpage, in a blue bar:

                          My MedHelp (1)
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