Lyme Disease Community
2.11k Members
Avatar universal


I have been ill for the past 12 yrs. Last week I was talking to a friend who had just been diagnosed with Late Stage Lyme disease.  I knew he was ill with something, but he never could get a clear diagnosis.

When he began listing all his symptoms my reaction was more that surprise because I have been experiencing ALL of what he described plus a few more symptoms.

I have been to specialist after specialist after specialist. None of them had ever even talked about lyme disease.  So I have learned to just 'live with it.'

After talking to him, I began to do some research. All the research I have found (symptomatic) is dead on for late stage.

I called my doctor this morning just to make sure about being tested for the disease ( i can't name all the tests that have been done on me!) And never had a test for Lyme. When I talked to my Dr, he stated he had never heard of Late Stage Lyme..  so here I am this afternoon look for more information and medical articles on the disease and I find this site.!!

I believe that Lyme Disease is what has been making me sick for all these years. I have everything!  Joint and muscle pain, unexplained fevers, migraines, on some occasions weird rashes, clumsiness (and I bruise easily), been diagnosed with depression - anxiety/panic disorder - ptsd - suicide, swelling of joints, bone pain, major fatigue but also insomnia because of the pain, numbness in feet and hands (this was the first symptom that led to get a checkup), increase in allergic reactions to antibiotics and allergy meds. What really bothers me is that I have had recent problems with numbers... adding/subtracting/switching numbers.. etc...I had to close my checking account because I kept switching numbers and ran myself into debt.

I have scoured this site and read almost all posts about this.  Talked to my doctor again, but he is still skeptical that this can even happen.

I have had several tick bites since I was a little girl, Grew up in the outdoors, love the outdoors.  Every year I find ticks either on me or in my house.

I am very frustrated and don't know how to convince my DR to do the tests that need to be to at least rule out Lyme disease.

I am tired of being sick and non-functional.  It may not be Lyme disease, but everything I have read...it fits. It never occurred to me either that it may be Lyme disease, and I should know more about this disease than I do, considering where I live.

Any help on talking to my DR would be extremely helpful.
55 Responses
535822 tn?1443980380
Wecome kaydey you will geta lot of help here I will give you my long story another time it is very similar to yours ,first I will give the others a chance as like you I havent had much luck with Doctors .
428506 tn?1296560999
I'm sorry that you've been sick for so long, but hopeful that you may now be on a path to answers/treatment.  It sounds like other conditions have been ruled out, which does make Lyme a more likely suspect as it can mimic so many conditions yet evade testing.

I'm not an expert or anyone special, just a patient dealing with this illness.

I do not think you will have luck convincing your current doctor.  You say that you've been looking around the site a bit, so I'm sure you've read that Lyme is often very difficult to diagnose and treat, and is misunderstood and underestimated by most physicians.

The term used by patients to designate doctors who will help us is "Lyme literate" physician, or "LLMD."  Often times, only an LLMD will diagnose and/or treat late stage Lyme.  Try doing an internet search of "LLMD" plus your city/state, and see if you get any names.  

You may want to also look up International Lyme And Associated Diseases Society (ILADS).  It has content spanning basic Lyme info to their treatment guidelines.  Note that ILADS represents a tiny minority!  Most doctors do not know much about, or even acknowledge, difficult cases of Lyme disease.

Other great info can be found in the book "Cure Unknown" (by P. Weintraub) and the film "Under Our Skin."  Both have informative websites that are easy to find.

By all means, keep pushing your doctor.  But you may well benefit from also seeking out an LLMD.  Many have long waiting lists to get in for initial appointments, especially this time of year.

Take care and let us know how you're doing and what questions you have.
Avatar universal
Welcome to our Lyme neighborhood.

Many of us have wandered around like you have, looking for answers, until we stumble on something like this site, or a book, or a friend who has had similar symptoms.  I'm sorry it took so long for you to find this clue, but you're here now.

If you can't locate an LLMD in your area, post back and we can scout around a bit.  The ILADS website Wonko mentioned is very helpful in many ways.

Take care --
Avatar universal
This is the first site I found that actually had ppl who seem to have been suffering like i am.  I have printed out many pages ( sooo many pages) of research on Late Stage Lyme it isn't even funny.

I am not a hypochondriac, I rarely see my DR unless it is something I absolutely cannot live with or that I know I need treatment for.

For me to hear that this disease is not possible for me to have unless it is within a few mo of being bitten really gets my Gaul.   Why don't physicians read the recent articles and data?

Thus far tonight...besides the previous print out from Robert Bransfield, MD., I have printed out three more medical journal articles explicitly  about Late Stage  Lyme.  

The more I research, the more frustrated I get.   I know this is what has been causing me to be ill for so long. And yet I have been forced to 'just live with it.'
Avatar universal
BTW.. how do I find a Lyme Literate Physician?   I live in South Dakota.   The closest thing we have to a diagnostic unit at Mayo...and I have been there.  

They released me because i was 'temperamental' and told one doctor to 'f'' off after he tole me it was all in my head.

It isn't all in my head. And the more I read about LSL the more angry I get.  

I KNOW this is what is wrong, i know there is treatment (sort of) but tonight i am really getting upset knowing that my own doctor, the person who has taken care of me and my children for 23 yrs, is saying there is no such thing!!!!!

How do I deal with that????

Avatar universal
How far can you travel, and in which direction? There are people on this site who drive 4 or 5 hours to an LLMD and they find it definitely worth while.

Don't get too wound up about the 'late stage' aspect of Lyme.  You are where you are, and while Lyme is easier to cure in the early stages, that means the very early stages, which most of us are long past before we finally get diagnosed and treated.  Treatment of late stage (aka 'chronic') Lyme is harder and not as certain, but it's not hopeless.  
Avatar universal
Your story is pretty typical for many of us.  We end up doing our own research and figuring out what we have.  You could insist that your doctor order a lyme test but your best bet would be a LLMD.
Avatar universal
Traveling is the problem.   I am agoraphobic.  For the past few years leaving my house has not been much of an option.   And as I stated before the closest diagnostic DR I will probably find is at Mayo, in Minnesota....If I have to, I am willing to take enough meds to get to me a DR that will actually help me!!!   (that means me being passed out for a couple of hours,, but, hey.....if it will get me a diagnosis that is real... it is worth it...:(    )
Avatar universal
I still need to find out where I can find a LLD...  It is apparent that my DR is not one of them.

I also apologize for sounding so rude.... I am just frustrated.   I am sure I finally know what is wrong with me, and yet my DR has no clue....

I will do whatever it takes to see a physician who is knowledgeable about this..  if it means me taking extra meds to make me sleep through the trip and to whatever hospital...so be it.

I am just so tired of being tired and everything else.  
428506 tn?1296560999
You do not sound rude at all.  You sound sick and tired, and we've all been there.  

Does your agoraphobia predate your illness?  I ask because a lot of us with Lyme seem to be susceptible to sensory overload and can be uncomfortable with crowds and big places.

Go to google and enter the expression "how to find an LLMD" and you will find websites offering advice on how to conduct your search.  There are online referral services.  We're not "allowed" to post direct links to them because MedHelp wants you to stay here (and we do, too!) and they count that as promoting the competition.

Try to find an ILADS LLMD.  Some of the services will let you check that as an option.  This ensures that they have some extra exposure to current Lyme treatments.
280418 tn?1306329510
Yes, you are just in that angry stage that it seems all of us go in and out of from time to time.  Some more than others (me:).

As they said, try searching for an LLMD on ILADS.  It seems like its a big secret to find one because 1) Medhelp will not let us post 2) Often they don't want their name plastered everywhere b/c they may get in trouble with their state licensing board and etc etc etc.  It's a ridiculous mess b/c the CDC screwed up the entire thing years ago.  You'll start recognizing some of the names of our allies and our "enemies" when it comes to Lyme.  There are certain people who have been with the IDSA, mucking up our chances at being treated.

You need to watch the movie, "Under Our Skin" and read the book, "The Cure Unknown" by Pamela Weitraub (sp? - I think that's the author's name).

If you could possibly get a doctor to sign off on an Igenex Western Blot for Lyme, then you are off to a great start.  You'll have to pay, unfortunately, about $475 and then you can submit it to insurance.  Sometimes, you can slide it onto a non-literate MDs desk and they'll agree - but usually, they'll scoff and say Labcorp or Quest can do that.  Yes they can do it, but no, they won't do it the best way possible and may very well give you a false negative.  

Take care and good luck.  You have found a great group here to help.  They are awesome.:)
Avatar universal
Anxiety and crankiness are two things I had a lot of.  I could see it happening, and just couldn't stop it.  It's part of Lyme, and overload happens quickly and harshly.  Be kind to yourself, forgive yourself, apologize to your family and friends when it happens, and plow ahead.  Let us know what you decide to do and how it goes -- Best wishes!
Have an Answer?
Top Infectious Diseases Answerers
1415174 tn?1453246703
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