Help! We keep being told that my daughters symptoms are psychological!

My 16 year old daughter has had recurring neurological symptoms this past year.  We have been to several neurologists and had a multitude of tests, but they have been unable to find anything abnormal.  They keep suggesting that this normal, active, happy young lady should see a psychologist because her symptoms follow no known neurological pathways.

This is a rough chronology of her symptoms which may or may not be relevant:
- Early last summer she had several unusual rashes on her torso.  They "looked like burns,but weren't."  They were approximately the size of a silver dollar and they did not itch or hurt.  We didn't think anything about them and they went away within a couple of weeks.
- Late June, she lost peripheral vision in her left eye.  She was at swim practice and got out of the pool and couldn't see anything out of the left side of her left eye.  We went to the opthamologist, he did numerous tests and could find nothing wrong.
- In September, she was hit in the face with a football and experienced a locked jaw and subsequent ongoing tmj issues
- In November, she lost the feeling in her left leg.  From mid thigh down, it was completely numb and got progressively weaker.  She had MRI's and other tests done and nothing abnormal could be found.
- In February, she had a root canal and was put on antibiotics.  Her peripheral vision came back and she regained feeling in her leg.  She had severe pain in her leg for weeks and her neurologist put her on Neurontin.  She had some difficulty adjusting to the Neurontin and experienced some side effects and mood swings.
- She has since experienced random intermittent symptoms where her leg will go numb and then the feeling will come back with pain lasting anywhere from a week to a month later.  
- She has also had a lot of joint pain and injuries, often "dislocating" the knee, wrist, or fingers.  
- She complains of sensitivity to heat/cold and often wears sweatshirts when it is very hot, or complains that "her skin feels like its on fire" after exertion.
- She has had episodes of difficulty breathing, with asthma-like symptoms
- Most recent involvement is that her right leg has become numb, so now she has issues bilaterally.

She is a perfectly normal teenager with no behavioral cues that would indicate an acute anxiety disorder that would cause physiological symptoms.  There are no correlations in stress level and symptom onset.  Furthermore, my niece, a 23 year old college graduate, had a similar rash this spring and has been experiencing unexplained severe chest pains, with a variety of tests that all come back normal.  Guess what?  The doctors have told her that it is stress and she needs to go see a psychologist.  I have a very difficult time believing that two perfectly normal young ladies have similar physical experiences,  are so troubled that they are having physiological manifestations of stress.  

I have twice requested that my daughter be tested for Lyme disease.  My doctor has not given me a copy of the report or even told me which test was performed - only that it was negative.  Should I be insisting on more tests?  If so, which ones? Does this sound like it could be Lyme disease?  Who should I be consulting on this?  Are there any doctors out there who won't roll their eyes when I ask about Lyme disease and will take this seriously?

Any help would be appreciated.
Thank you!

[Ness78]

Hi there,

I am sorry to hear that you cannot find answers.  I only have small kids...but the anxiety of having a sick child is insane. I am sure my mom has gone nuts over my illness even though I am 33.

You can have a private test done with the IGENEX lab.  You can find them on google.  Call them and ask them to send you a kit.  You can get the basic lyme panel for $230 dollars.

You can go to a local blood lab and have the blood drawn and spun for a small fee.  It does need to be signed off by a doctor, or naturopath....maybe a dentist.  Ask everyone. Naturopath may be the most open since they don't mind being on the fringe.  

You need to have the blood drawn early in the week and early in the day so it can be sent off by puralator to the IGENEX lab.

This is considered the gold standard of Lyme testing. Although...there is a possibilty for a false negative..so I would keep pressing on even if it is negative. The test your doctor will probably run  (the Elisa) is basically useless anyways.

Next would be to find a lyme specialist - lyme literate MD...llmd.  You can go to lymenet(dot)org and go to flash discussion and then ask for one in your area.  They will give you personal recommendations.

That is my little bit of info. I wish you well....keep pressing for answers.  Doc't will say it psychological when they don't have an answer....maybe it makes them feel better.  

Other people on here may have some more info for you.

All the best...

[JackieCalifornia]

Welcome to MedHelp, but sorry you have to be here --

I would react exactly as you are.  Many of us here have been through similar denial and misdirection from well-meaning docs.  As you are finding, there is a split in the medical community about Lyme and other diseases carried by the same ticks, as to how prevalent the infections are, how serious they are, how to diagnose them, and how long to treat once a diagnosis is made.  At each of those steps, so-called mainstream medicine is, imho, dropping the ball in a serious fashion.  I'm not medically trained, but here's what I've figured out over the last few years of dealing with Lyme and docs myself:

Definitely find a Lyme specialist.  He/she can be of any discipline (internist, GP, whatever), because it is an open mind and willingness to think broadly that is the key.  Sadly, many of us here have not found the most logical choice -- infectious disease (ID) docs -- to be useful with very few exceptions.  The reason is that when a mysterious new infection was first investigated in and around Lyme CT, the ID docs and neurologists were the first to be involved.  Unfortunately those same docs jumped to conclusions about Lyme being hard to get and easy to cure, and they have built their careers on those bases.  Those docs are still at the top in the Infectious Disease Soc'y of America (IDSA), and they have impeded further understanding of Lyme as a very tricky little bug.  Just as bad is the fact that the IDSA sets diagnostic and treatment standards which MDs adhere to, like how many stars a Michelin-rated restaurant has.  If the IDSA says something, it must be right; if a restaurant has five stars, it must be good no matter how lousy the food and the service.

Thus has sprung up a separate group, ILADS, for International Lyme and Associated Diseases Society, with a website at ILADS [dot] org.  If you go there, you will find under the 'About Lyme' tab Burrascano's 'Diagnostic Hints ... ' paper, which is technical but accessible to the lay reader, if you are interested.

You will also hear the term LLMD:  'Lyme-Literate Medical Doctor.'  It is NOT an official designation, and indeed is said with a sneer by nonILADs docs.  Because in some states MDs who stray from the IDSA guidelines can be charged and lose their licenses to practice medicine, many Lyme docs do not want to be known as such.  

Here's some good news:  California is not one of those states.  California permits freedom of conscience to MDs, to diagnose and treat according to conscience, as I understand the situation.  Still however many docs don't want it known that they take a broad, ILADS-type view to diagnosing and treating Lyme, because they can and will be ostracized by the nonILADS medicos.  

Nevertheless, we guard against putting LLMD's names in public here, to avoid making trouble for them inadvertently.  They are often referred to as "Dr X" or "Dr Y" here.  I will send you a private message (PM) with some more specific data, since I am in California too and have some suggestions.  Look to the top of this page at the right side, for 'inbox / logout / my shortcuts' and when you see a number like (1) next to inbox, that means a message is waiting for you there, so click through.

In addition to the ILADS website, I recommend the unfortunately titled book 'Cure Unknown' by Pamela Weintraub, a trained science writer whose family got Lyme in Conn., and what they went through to get well, as well as her analysis of what the heck has gone wrong in modern medicine to get us to this point that we have to sneak around protecting docs from their 'peers.'  It will give you the big picture of what Lyme patients are up against.

Good for you for not letting the docs blow off your daughter's condition.  

Signing off here to go write more in a PM to you.
I will send you a private  

[Tammy826]

I don't know if this will help but I went through symptoms for years with no diagnosis & was also told it was anxietty, depression ect. Finally in August of this year I was diagnosed with both lymes disease & multiple sclerosis. My neuro said me having both was probably throwing off the other doctors. My lymes is inactive right now & its chronic so no treatments but MS is in a flare & I will be starting on MS meds soon.