Confusion about Lyme: diagnosed in May

[ls1tosvt]

I hope someone can help clear up the confusion I have regarding lyme, as I'm not getting much help from my doctor & am still confused.

I went to the dr. regarding migraines.  They did blood work on me and I didn't knw they were doing a lyme test but they did.  I was diagnosed in May and was told they saw 2 cases; an old one and a newer ones (the newer one having occurred within recent months).  I never thought I had lyme as I never got the infamous rash or anything.

I was prescribed antibiotics (doxycyline) and was told to finish that up and that was all.  I now see a neurologist for my headaches.  He had mentioned he may want to do a spinal tap on me to see if lyme is causing my migraines.

My questions are these:
Do you ever recover from lyme or is it always in your system?  

If so, can you still feel symptoms of lyme years down the road?  (I have no idea of the time range from my "old" case of lyme")

Also if yes to the 1st question, should I be taking or doing something about the lyme?

Should I be seeing an infectious disease specialist instead of a neurologist?


I'm sorry these are probably the most obvious questions.  I feel as though I've been told I have lyme & yet it seems to be a fading concern.  I feel EXACTLY the same as I did before being told I have lyme.  I have migraines, genreal aches and pain, fatigue often, etc.  Nothing has changed, so what should I do now, if anything?  Or do I just have to live with this?

Thanks for any help.

[ls1tosvt]

Thanks for all the help and advice, I really appreciate finally having some insight regarding these questions, as I've had them for so long.  I am going to look into finding a doctor who specializes in this and go from there.  

Thanks again!

[wonko]

They are not obvious questions and your feelings about your situation are valid.  Lots of us (self included) were told over and over that it couldn't be, wasn't, Lyme.  I also took the route of seeking out an LLMD, and owe my recovery to it.  

Best of luck...

[JackieCalifornia]

I agree with beanie and gorby above.

You are (in my non-medically-trained opinion) asking the right questions.

It's good that your doc thought to test you for Lyme and was careful enough to read an old and a newer infection.  That is more than many MDs would do.

Here's the backstory on the other data you are getting from your docs:

-- a spinal tap is not terribly reliable for diagnosing Lyme, and most LLMDs don't use them, as far as I know.

-- neurologists and infectious disease docs are often among the specialists who take the strictest view of diagnosing and treating Lyme, which if you are 'lucky' enough to get a positive diagnosis from them, a few weeks of doxy treatment is about all you'll get, no matter how you feel afterward.  The docs in this camp hold the view that if you still have symptoms after treatment (as you do), it means that you don't have the bacterial infection anymore, and you just have an auto-immune reaction in which your body is continuing to react to the Lyme bacteria that are ... no longer there.  (Yeah, go figure.)  Rheumatologists are also often unbelievers about Lyme.  

(The reason for the failure of these specialists in particular to not 'believe' in Lyme is that when it was first being recognized in the US, the docs who saw the first patients were infectious disease docs (because it seemed to be an infection, and in fact is) and rheumatologists (because many Lyme patients get joint trouble, and esp. in the knees.  Despite developments in understanding Lyme over the years, these docs staked their reputations on Lyme being hard to get and easy to cure, and those docs are still running things at the Infectious Disease Society of America, or IDSA.  IDSA sets recommended diagnosis and treatment guidelines that are recognized and used by most docs, just like going to an old Betty Crocker cookbook for a reliable recipe.  Well, Betty didn't have a microwave 'back when', and cookbooks have been updated for regular and microwave directions ... but the IDSA docs are still using their old medical books from the pre-"microwave" world.  Therefore what many of us here have done is find a doc who thinks bigger thoughts, often called an LLMD, slang for 'Lyme Literate MD' -- it's not an official title or degree.  LLMDs are often but not always members of ILADS, or International Lyme and Associated Disease Society.  Their website is ILADS [dot] org.  There is a great deal of ill will from IDSA toward ILADS, unfortunately, and we the patients are caught in the middle.)

Bottom line:  The docs you have seen do not sound like ILADS type docs.

The ticks that carry Lyme often carry other diseases as well, and those must be tested for separately from Lyme [different tests] and often treated with different meds [other than doxy] and sometimes for longer than you have been treated, due to a peculiarity of the Lyme bacteria that can hide in cyst-like structures they create in the body to avoid the meds and the immune system.  

So.  To your specific questions:

-->Do you ever recover from lyme or is it always in your system?  --> Yes, it can be cured, although it takes a while.  Some people may not be 'fully' cured but the bacteria are beaten down so far that it functions like a cure.  

--> If so, can you still feel symptoms of lyme years down the road?  (I have no idea of the time range from my "old" case of lyme") --> Because the tests are imprecise, it's hard to tell if the cure is total and absolute, but if you are having symptoms, it's worth going for testing and treatment, because the bacteria don't just go away by themselves.

--> Also if yes to the 1st question, should I be taking or doing something about the lyme? -->  I'd consult a Lyme specialist.

--> Should I be seeing an infectious disease specialist instead of a neurologist?  -->  I'd consult a Lyme specialist for the reasons stated above.  

If you need help finding an LLMD, you can google "LLMD [Kansas]" or wherever you are and see what you get.  You can also find referral functions at some of these websites:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

In some states, LLMDs are harassed by local medical boards and so we don't post their names in public here.

You are asking all the right questions -- let us know if we can help further.  Best wishes!

[gorbybelle]

If I were you , ie; had a test which had shown I had been infected I would find a 'lyme literate medical doctor' know as 'LLMD'. - lyme can cause many different symptoms and migraine type headaches seem fairly common amongst people who have been infected.

Yes you can feel symptoms years after being infected, it often seems that a new tick-bite or a stressful time can reactivate the disease.

I am not sure anyone knows if lyme is ever completely gone from the body but there are certainly many people who feel 'normal' again after treatment.

An LLMD. is really the only specialist when it comes to diagnosing and treating lyme.

Most mainstream doctors stick to 'guide lines' which  usually means in adequate treatment - though you are lucky that someone recognised that your symptoms could be lyme and did the testing - many people have to fight to get their doctors to test for tick-borne infections.


  

[beanie485]

I would go see a specialist definitely