Could this really be Lyme disease?

[Moonflower09]

I have trigeminal neuralgia
Diagnosed 2013. Determined idiopathic.
It usually is a quick, intense pain but then subsides.
Not now.

Recently I've been diagnosed with eosinophilia. Too many of eosinophils a type of white blood cell.

About a month ago, the trigeminal neuralgia started waking me up at night. And the "zap" was different. At that time, it was in my left eye. And the "zap" held on. Unbelievable painful. I felt paralyzed until it FINALLY stopped. How long, ? Seemed an eternity. But it was quite during the day.

This morning it woke me up again. This time, top left scalp and ran to my top left lip. And it hasn't let up all day. It comes and goes, but it doesn't stay away for long.

When it's not "zapping" I am left with an odd tingling sensation on scalp, upper left lip, and cheek.

The other odd thing I noticed today, after an intense ZAP, my brain went foggy. Had the hardest time making it thru work. Major brain fog, dizziness, and my vision would go blurry.

Now I am completely exhausted.

Anyone know what's going on?
Do I need to call my doctor?
Neurologist will just want to do another MRI. Still paying on the last THREE that showed nothing.
Do I call my hematologist?

Lastly, Almost 2 weeks ago, I had an unexplained fever of 102. No other symptoms. Hit me out on walk with dog. Barely made it home. It knocked me out. I crashed, sweated like crazy, and my daughter said I was trying to say something to her but she couldn't understand me. I also remember feeling like the walls were pulsing and or moving. IT WAS NOT FUN.

Is this coincidental or could they be related?

Please someone! What is going on???

FYI: Lyme disease test came back negative

[JackieCalifornia]

PS  two more thoughts --

1 -- Another reason to go to a Lyme specialist for another blood test is that the tests Lyme docs use are better than the golden-oldie tests other docs tend to use.  

2 -- 'LLMD' is not a degree or title ... it is patient slang for an MD who really understands Lyme and how to treat it.  LLMD = 'Lyme-literate medical doctor'.  If you ask a doc if s/he is an LLMD, they will likely smile and say no, even if the doc IS a specialist in Lyme.  

[JackieCalifornia]

Thanks for your post -- we're happy to help.  

Some responses to your post:

You say:  "I've had TN since 2013. Would it last this long?"  To my understanding, Lyme is very happy to burrow in and live the good life in your body.  It has no reason to leave, and it has the special trick of hiding in cartilage, where the immune system cannot easily find the Lyme bacteria to kill them.  That is one big reason a couple weeks of doxycycline is often not effective in treating Lyme:  cartilage does not have a lot of blood flow through it, so once the Lyme bacteria are burrowed into it, your immune system doesn't have the access it needs to find and kill off the Lyme.  I think of it as bad guys holed up in a cabin in the mountains:  you may know they are there, but it's rough going to get up the mountain, find them, and get rid of them.  (If Lyme is treated very very soon after initial infection, then doxycycline can be effective, because the bacteria are still where the immune system can reach them -- but after a fairly short while, they move into cartilage and it takes something other than doxy to root them out -- and there are good antibiotics that do just that, but it takes a Lyme specialist to know it.)

You say:  "What about the eosinophils? Hemo doc wants to do a bone marrow biopsy. Should I not?"  I'm not medically trained at all, but I personally would get a work up with a good Lyme doc before going into something as major as a bone marrow biopsy.  (If my car is going thump-thump-thump, I check the tires to see if one is flat before I rebuild the engine, y'know?)  Part of what you may be experiencing is that Lyme is simply not on the radar for most MDs.  The relatively recent spread of Lyme throughout many areas has caught the docs flatfooted, and they just don't take it seriously or realize how widespread Lyme has become.  A Lyme doc would likely give you a quick physical and medical history questionnaire and then order blood tests:  that would be the way I would go myself.  

(When I was ill, I had no idea I had Lyme -- I felt like I had a cross between the flu and a hangover, 24/7, for months.  Went through a bunch of docs who were all clueless -- one suggestion made was to go to a shrink -- and then Doc #20, out of all other options, ran a Lyme test.  It was positive, and that doesn't always show up on the old fashioned tests many non-Lyme docs use.  An old friend of mine had had Lyme some years before, and once I heard the word 'Lyme' from that doc, I knew it was time to go to a LYME doc and stop messing around with the other docs, who meant well but were clueless.  The split in the medical community when faced with a new and rapidly spreading illness is amazing ... just like when AIDS first came on the scene and the supposedly brilliant docs from the Centers for Disease Control (CDC) went on TV to intone that you could not get AIDS unless you were Haitian or gay.  Like the bacteria care, right??  End of rant.)

You say:  "I'm still confused about Lyme:
     1: don't recall being bit by a tick
     2: don't recall the bullseye rash
     3: don't recall the "initial" flu like symptoms listed as first symptoms of Lyme."  My responses:

1 -- The Lyme ticks are babies the size of the period at the end of a sentence, not the big whopping dog ticks we are used to seeing.  Many of us never see the tick(s) -- I didn't and neither did someone else in my family.

2 -- Not everyone gets the bullseye rash, and sometimes that may be because the bite is on the scalp where it doesn't show, or on the middle of your thigh where you didn't see it, or who know.  I didn't get a rash either, nor did someone else in my family, but we both had Lyme and babesiosis.

3 -- I don't know where the 'initial flu-like symptoms' thing comes from.  I felt a little dragged out, and so did my family member, but we were busy traveling and working and it seemed normal for us to be tired after all that.  It makes as much sense to say that breathing is a sign of having Lyme.  NOT.

You say:  "Can Lyme disease last THIS long?"  Yep.  Lyme is, to my understanding, pretty much a permanent infection once it settles in.  Lyme is in the same bacterial family as syphilis, which also is a permanent (and awful) infection unless treated and eradicated.

You say:  "The trigeminal neuralgia is getting worse. It's starting to really wear on me."  I would think it goes away when the Lyme is wiped out.  Your Lyme doc will know.

You ask:  "Bone marrow biopsy? Should I wait?"  I would see a Lyme doc for a work up first, and then consider the options.  I would bet lunch that a Lyme doc would pass on a bone marrow biopsy.

You ask:  "Ask hemo doc to do another Lyme test?"  No, I would get to a good Lyme doc.  Hemotologists may be enlightened about Lyme, but rather take a guess, I would find a Lyme specialist who understands Lyme for certain.  A Lyme doc can be any kind of MD:  mine happened to be an immunologist by training, but the rise of Lyme led him into that field.  

You say:  "Thanks for the help."  You are very welcome!  We've all been where you are, and we are glad to share our collected knowledge and our experiences.  Someday the medical community will gets its total act together, but till then, we have to figure it out for ourselves.  

To find a Lyme doc near you, you could (1) post a new message here "Need LLMD near [Dallas TX]" or wherever you are, and someone may then send you a private message through this website with the name of a Lyme doc ... we do NOT put LLMD's names in public here, to keep the stubborn medical community from giving grief to 'our' Lyme docs; and/or (2)  go to the ILADS website, where there is a referral function to get the name(s) of Lyme docs near you; if you don't like the first few docs or they are overbooked [it is late summer after all:  Lyme season], snoop around online in your area and you may find some leads.  

Let us know how we can help -- and keep us posted!  We've all been where you are, and remember:  Lyme can be beaten -- and it deserves to be!

[Moonflower09]

Hmmmm....
Interesting.

But, I've had TN since 2013. Would it last this long?
What about the eosinophils? Hemo doc wants to do a bone marrow biopsy. Should I not?

I posted this here because this same post was in another community and they suggested to post here.
You folks are the first to respond after MONTHS of asking in other communities.  THANK YOU!

I'm still confused about Lyme:
1: don't recall being bit by a tick
2: don't recall the bullseye rash
3: don't recall the "initial" flu like symptoms listed as first symptoms of Lyme.

Can Lyme disease last THIS long?

The trigeminal neuralgia is getting worse. It's starting to really wear on me.

Bone marrow biopsy? Should I wait? Ask hemo doc to do another Lyme test?

Thanks for the help.

[mojogal]

Not feeling great but wanted to say my TN (VERY PAINFUL) was one of my first lyme symptoms. Lyme likes to go in gums, teeth, jaw and up.

Do find a LLMD and good luck.

[JackieCalifornia]

Very sorry to hear of all you are going through!

You have been through a bunch of specialists ... and since you have arrived at the Lyme disease site here, it sounds like you might be wondering about Lyme.  Many MDs don't 'believe' in Lyme as a serious illness, but they are just not up to date, imo.  Neurologists in particular are not interested in Lyme disease, for some reason I don't know.

I just now searched online for  

                       ---   lyme disease memphis tn  ---  

and found many interesting links of groups and medical care in or near Memphis.  That is where I would start, because you can figure out who the good Lyme docs are from the experience of others.  

About the last sentence in your post (saying that your Lyme test came back negative), that is not uncommon.  The problem is that the usual Lyme tests (ELISA and Western blot) are designed to look in your blood for the reaction of  your immune system to the presence of the Lyme bacteria in your blood.

That sounds perfectly logical, BUT there is more recent research and understanding that Lyme bacteria can and do *suppress the activity of your own immune system*.  As a result, you can have a lot of Lyme bacteria in your body, but the older Lyme tests say you don't have Lyme because your immune system is NOT reacting to the presence of Lyme.

It's like burglars who turn off the alarm system before breaking into a house.  If there's no alarm set off, no one know there was a burglary till the next day ... and in Lyme, that means Lyme is busy infecting your body, but the ELISA/Western blot tests STILL say that you do not have Lyme.
-------------------------------------
To avoid this problem, there is another, newer kind of test, created by IGeneX Labs in California.  The test does not look for your body's immune system trying to kill the Lyme bacteria, and instead the test looks for Lyme bacteria genetic material (like DNA).  If Lyme DNA is found in your blood, then (to my understanding) you have Lyme disease.  

Bottom line:  the tests that came back negative and caused your docs to say that you do not have Lyme were probably the W.blot/ELISA tests that can be fooled by the tricks Lyme has to conceal its presence.

When I was so ill with what turned out to be Lyme disease, one of my nonLLMD docs told me that although I had a positive Lyme test, I could not possibly have Lyme disease, because I was not sick enough.  Whaaaat???

There are lots of ignorant MDs out there, so it's important to figure out how to find a Lyme specialist who DOES understand Lyme and how to test for it and how to treat it effectively.  

Many MDs who prescribe a few weeks of doxycycline against Lyme will likely not consider that the doxy treatment is a failure, and instead will give the excuse that the doxy treatment worked fine and the Lyme bacteria are all dead, and the reason the patient still feels lousy is that the patient has an over-active immune system that just *thinks* the patient still has Lyme.

Duh?  That's a big stretch, when the most logical and direct conclusion is that the Lyme bacteria really ARE still alive and active after a short course of doxycycline.  (Sometimes doxy can work, but it has to be given very soon after initial infection, or it won't work.)
---------------------------------------------------------------
Bottom line:  the Lyme test(s) you got that came back negative may well be ELISA and/or Western blot tests that are simply inaccurate.  Your doc has to give you full copies of your test results if you request them, and I would always ask for and insist on having such results.  You never know what another, wiser MD might understand that the less learned MD did not perceive.

What to do?  I would find a Lyme specialist for a second opinion.  Let us know if you need help to find one.  We've all been where you are, so we understand what you may be going through.  

Take care! -- and try not to worry.  Lyme is beatable.  I'm living proof, and I'm not the only one.  :)

[bdonahue7]

Did any bands on your lyme test come back +. You may not be CDC positive but still have lyme. I have tri. neuralgia that comes and goes. I've had it before I got lyme and co's. It's extremely painful:( The fever could be a co infection. I'm not sure of the other symptoms, maybe ask a lyme literate doctor to test you through Igenix. Good luck and welcome to the sight!