18 year old son symptoms

18 year old son symptoms

I had posted this on the MS forum and it was recommended I also post on Lyme Disease community to get feedback.  I have tried to put in chronological order.  Son has seen several doctors.  His GP, a Rheumotoligist, 2 Urologist and a Neurologist.

July 2009   -   Son felt tired more than usual.  Little bit dizzy and mild headaches.  He also felt his soccer playing was affected and he was playing up to par.  We live Northern Illinois and son practiced soccer 3 days a week in soccer fields adjacent to heavily wooded area.

July 2009  -    Visited doctor (GP) for school physical and he felt there was nothing to be concerned about.

early Oct. 2009  -   Lymp nodes on right side of neck swelled up (marble size- no pain).   Doctor felt abdoman and thought spleen slightly enlarged.   Had a Mono test done came back negative.

late Oct. 2009  -   Son complained of overactive bladder.  Came on pretty suddenly  Had never had any bladder problems to having to go every 20 minutes.   GP ordered an ultra sound & urine test.  Both came back fine.

Nov. 2009  -   Went to urologist (first).  He said nothing to worry about will go away on own in 4 to 6 weeks.  Common in young men.   Put him on Enablex to help frequent urination which didn't seem to help much.

late Dec. 2009  -  Called urologist and said still no improvement.  But son muslces in front of waist/groin area were tight - muslce spasms from trying to hold urine all the time.  Also his tail bone began to bother him.  This doctor snapped that he was "very sure" nothing serious was wrong and give it another 6 - 8  weeks.  I hung up and immediately called another Urologist.

Dec. 2009  -   New urologist changed med to Vesicare and it extended time between bathroom visits to 35 mins.  Also started seeing a Chiropractor (who thought his spleen still enlarged).  

Jan.-Feb.-March    Several more visits to GP, urologist, Chiro.   Took another Mono test and came back negative.

April 2010 -    GP recommended Rheumotologist who did tons of blood test, blood smear, CT scan.   He ruled out thyroid, B level, and tons more.  CT scan was fine.  Loss of appetite and he is about 10 lbs down in weight.

May 2010  -    Rheumotologist ordered MRI Brain/Neck.  Test came back showing "a few" lesions on brain.  He felt this was probably MS and sent son to Neurologist.   GP felt son does not have common symptoms and was not convinced it was MS.   Son has 1 great-aunt who had MS.
                    
May 2010  -   Neuro looked over radiologist report and tested his reflexes.  She said she would not speculate what he had until she had seen MRI CD ROM herself and ordered additional Neck Scan and C Spine MRI.  Also a chest xray and 15 different blood test which included Lyme Disease test.  

Today  -           Son doesn't have appointment with Neuro until mid July.  We hope to get results before then.  He is suppose to start college this August a couple of hour away so we need answers.  

His symptoms today are tail bone pain when sitting or standing too long.  Overactive bladder has improved slightly and he has stopped taking Vesicare.  Fatigue and sleeping a lot.  

Based on his symptoms do you think this could be Lyme Disease?  If blood test comes back negative should we pursue more tests?  

Also, son has been on Amnesteen (a form of Acutane since December) all of his symptoms occured before he started taking.  His neurologist said she saw no problem with him being on this and he has one month to finish although personnally would like to see him off!

Thank you to anyone who takes the time to read this.  Your advice will be most appreciated as we wait in limbo for an answer.

Lynn
NEAMOM

[JackieCalifornia]

I'm a mother too, so I do understand how you are feeling.

I think you are doing all the right things -- most particularly in pursuing what is going on instead of shutting up and going away as some MDs would like.  

Lyme and the other diseases carried by the same ticks have a long list of possible symptoms, and it's different in everyone and different in each one of us over time.

Therefore your son's symptoms won't be exactly the same as anyone else's, but that's okay.  What's important is finding an MD with an open mind who understands Lyme and also understands the closed minds of too many in the medical community.

First thing:  find an LLMD, which is casual shorthand for a 'Lyme Literate MD', that is, one who takes an open minded approach to the whole situation.  It's not a qualification or a degree, just a handy nickname we Lyme patients use.

We don't post LLMDs names in the open here, because state and local medical boards have harrassed too many of them and tried to take their licenses.  If you will tell us what geographic area you are in, tho, we can perhaps recommend someone we have used.  Like "Kansas" or "New Jersey area" or "Boston Area".

Second:  Check the ILADS [dot] org website.  It has a physician referral function, and it also has a ton of information:  but don't get overwhelmed by it, just know that it is there when you want to know something.  ILADS is International Lyme and Associated Disease Society, and it is the organization for LLMDs.  You'll see they are well qualified physicians, not a bunch of quacks ... but like with any MD, if you end up in front of one that doesn't seem quite right, find another one.  Some can be pretty fringe, but mostly they are okay.

Third:  Call and get an appointment right away.  There is usually a wait list.  If you have several names that all seem good, I would not be above making appointments with each one, and then cancel the ones you don't need, but of course far enough ahead of time that the dr's time is not blocked unnecessarily.  Time is of the essence for your son.

Fourth:  Collect all the test results you have from the MDs your son has seen.  If you can't get copies of everything, that's okay, but at least starting now, I'd keep copies of everything -- lab reports, notes of comments made at appointments, you name it.  The fatter the file, the better, imo.

Fifth:  Think about how your son is feeling physically and mentally and if you think it is warranted, contact the dean at his college and get his first term class load reduced so he can rest and take care of himself without being overwhelmed.  It's a judgment call, but you're his mother, you would know best.  A letter from the LLMD will help.  You don't need to do this before school starts, but keep an eye on the 'last day to drop classes' date so it doesn't cause problems.  A minor detail, but one that will be important to your son so he keeps his sense of accomplishment.

For your further consideration:  the MDs your son has seen already sound like the list I saw before I got diagnosed with Lyme and a co-infection.  Neurologists and rheumatologists are the most notorious 'Lyme deniers'.  There are historical reasons for their attitude, but many of them have staked their careers on Lyme being hard to get and easy to cure, and any patient who doesn't respond to a short course of antibiotics is deemed to have 'chronic Lyme', which is tagged either as a psychosomatic ailment ('all in your head') or autoimmune (your body attacking itself instead of the now-cured Lyme).  That's part of the reason for the response you are getting from the MDs your son has seen already.

There is an organization called IDSA, Infectious Disease Society of America, the great granddaddy of the MDs who handle infectious diseases, of which Lyme is one.  This the the clubhouse for the neurologists and rheumatologists (above) who have staked their careers on Lyme being hard to get/easy to cure.  Because the IDSA is a well-respected organization, other MDs who are not ID [infectious disease] specialists will bow to the IDSA position on Lyme without having looked into it, so regular plain old internists and GPs, for example, as well as other MDs, will almost always follow the IDSA guidelines.  That's the rest of what you are hearing from the MDs your son has seen.

I personally saw upwards of 20 MDs before getting a diagnosis of Lyme and a co-infection:  GPs, neurologists, internists, ID docs, endocrinologists, you name it.  A big zilch.  You have now run the gauntlet and are well positioned to move ahead.  You are doing all the right things as far as I can tell, so take comfort from that.

Let me put in a word about testing generally.  No two Lyme patients have the same presentation of symptoms, and because of the co-infections, symptoms can be all over the place.  An LLMD will doubtless run a bunch more blood tests, based on your son's symptoms, but that's about all.  

The standard Lyme tests (often through a company like Lab Corp) are used mostly by non-LLMDs.  LLMDs on the other hand often use a California lab called IGeneX, which does a more detailed test with more information for the MD to consider.  Non-LLMDs sneer at IGeneX, but don't let that bother you, because the 'standard' Lyme tests your son has probably already had are useful at some level, but they are not as useful as IGeneX tests for reasons I won't get into here.  An LLMD will also test for co-infections, which your son's current MDs probably have not done.

There is a movie out on CD called 'Under Our Skin' that is about 20-somethings with Lyme.  It is interesting, but I don't know that I would recommend it for your son.  Some of the people (who are all real patients) who are followed in the movie are extremely ill and it is rather alarming, imo, esp for a young adult just stepping off into the outside world as your son is.  The movie is good for shaking up people who don't believe in Lyme, but at this point, I don't know that it would do more good than harm for your son to see.  You might want to screen it yourself to see what you think, esp. before showing it to your son.  But don't YOU be unduly distressed by the movie either.  I was a very sick chicken, but I didn't have any of the severe symptoms some of the movie characters did.

More useful in my own life is a book now in paperback called 'Cure Unknown' by Pamela Weintraub.  Critic that I am, I think the book title stinks, because the cures are known (primarily antibiotics) -- I think a better title would have been 'Diagnosis: Elusive' but that's not very snappy.  It weaves personal stories with the scientific side of Lyme and is written by a professional 'popular science' writer whose own family got Lyme.  It's very accessible and might help you; it did me.  It explains what the controversies are about, which is indispensable information for someone coming new to Lyme.

And PS, if the neurologist you have an appointment with gets wind that you are seeing an LLMD, he might get huffy.  You might want to keep that to yourself, but keep the neuro appointment anyway, just to cover all the bases.  'Proceed on all fronts' is my motto.

Okay, that's my download.  Please let us know if you have any questions/concerns, because this is a good group of folks here.  You'll get lots of opinions, and it can help enormously as you sort your way through things.

Your son is lucky to have you watching out for him.  Take care of yourself too, okay?  You are a key part of your son's treatment and recovery.

Jackie

[JackieCalifornia]

PS  You might look for an LLMD near where your son will be in school, if you can drive there to attend the appointments (which I would recommend so you can keep oversight).  If it's easier for him to travel home, then finding an LLMD nearer your location would be better.  Each LLMD follows his/her own particular schedule, but seeing an LLMD every two or three months is pretty common once established as a patient, unless something strange pops up.  If you are near Chicago, that's one thing.  If your son will be near St Louis, that's another thing.  Your decision might be determined by which LLMD you like the sound of.  That's what's most important, along with lessening the stress on your son.  Some LLMDs also do phone appointments once the treatment is progressing well.

[wonko]

Well, JackiCalifornia pretty much covered it all, but I can chime in and say that yes, if your son's problems stem from an old Lyme infection, then you will need to seek out an LLMD to get a diagnosis and adequate treatment.  

When I started to get obviously sick, I was 28.  I spent a year actively pursuing a diagnosis through mainstream medicine, including several neurologists and a rheumatologist.  I had a couple of strange test results, white matter lesions on MRI, elevated SED rate, but nothing firm or conclusive.  I was given the ELISA screening test for Lyme several times, always came up negative.

When I started to suspect late-stage Lyme, all of the doctors I was seeing strongly denied it as a possibility.  It was only through actively seeking an ILADs doctors that I was able to explore this possibility.  It is difficult to accept that your diagnosis depends on which doctor you go to see, but unfortunately that is the burden with which Lyme patients are faced.  

Slowly but surely, I have improved from long-term treatment.

It was very difficult to make this choice for myself, I'm sure as a parent it is even more difficult as the consequences affect not just you but your child.  But if mainstream medicine continues to fail to find a cause/solution to your son's problems, I would highly suggest seeking out an LLMD.

[Neamom]

Thank you so much for your support and advice.  I will absolutely follow thru all your suggestions.  I am waiting for Borders to open to see if they have 'Cure Unknown' by Pamela Weintraub.  I will post for a LLMD in the Chicagoland area and maybe Champaign-Urbana area also.  

I have kept a file, however I have not been keeping track of the different blood work that he has had just the MRI's Scans, etc.  I will definitely pursue getting copies of these.
I plan on calling neurologist today for results.  He had C Spine MRI and Chest xray last Thursday so she should these results by now.

I forgot to mention his white count blood work has been consistently low.

How long does it take to get results of a Lyme Disease Blood Test?  Son took on 2 weeks ago along with many others and has not gotten any results as of yet.

I am beginning to understand this will be a journey getting a diagnosis but something in my mind and heart believes it is Lyme Disease.

Thank you again,
Lynn
NEAMom

[Hope75]

I have Lyme and I must say that I had tailbone pain that was quite severe in sixth grade, a short time after having 3 ticks embedded in my scalp for a week.  You are on a great forum, so keep in touch.  

Igenex is the lab you need to send his blood to, even with the cost.  I tested negative for Lyme on three Western Blots before Igenex said I was CDC positive.  I also had a positive ELISA at Johns Hopkins.

Hang tight, it is a good thing if it is Lyme vs. MS.  They have no idea what causes MS.  I, too, have one brain lesion that is "suspicious" for an MS plaque and have an aunt with MS.

Take care

[JackieCalifornia]

Glad you aren't overwhelmed by the data dump above!  It's a lot to absorb.

To answer your question about blood test results, a couple of weeks should do, but the mysterious workings of MDs offices are beyond me, so it could take longer.  A phone call might make them focus.  I found that negative test results were not communicated very quickly sometimes.  "Nothing to see here, folks, just move along."

Wonko and Hope are right in all they say, imo.  

Oh, and if you get stuck on the more scientific parts of Cure Unknown, just skim and later go back to fill in the blanks.  Sometimes it was more than my simple brain could absorb.  But the book will give you the big picture of what it's all about.  

Do let us know what you do and how it goes.  Sending you and your son all good wishes --

[JackieCalifornia]

PS again:  having a brief chronological summary of symptoms and events as you put in your original message is something some MDs like to have. Others, not so much, but I like handing over a document like that so they can't say they didn't know -- I get sidetracked in MD appointments and never seem to be able to get across everything *I* want to say, so having it typed up and handing it over when they walk in the door is helpful to me.  I say, go for it.

[Neamom]

Again thank you all for the response and although it is a lot of info. to digest, it is what we needed.  Borders has ordered a copy of Cure Unknown for us.  Hope 75 your post was encourgaing to my son to hear that others had similar symptoms especially the tailbone pain and it makes him feel like we are heading in the right direction.  

I called Neurologist office to see if we could get results.  However, the Doctor was out of office until 10th.  Called Rheumotoligis'st office he was out of office but I convinced staff to check for me.

They told me the chest xray was fine but they didn't have results from MRI of neck and brain.  All 14 other blood tests came back and showed no problems.  They could not find the Lyme Titer Test and are guessing it was accidently not requested.  Two weeks wasted time!  They wanted son to come in and have blood drawn but because we are about an hour away from doctor so agreed to fax order to Quest Lab.   Son and I drove the 30 min to lab but there was no fax waiting and doctor's staff was gone for the day.  It's a good thing I have till 8:00 am tomorrow to calm down.

As long as he will have to have Lyme Test "re-done", is the Lyme Titer the one he should be getting at this stage?  Is ELISA screening test same as Titer test?

How do you go about requesting Igenex Lab?  Would this have to be done thru a LLMD doctor?

Thank you all and God Bless!
Lynn
NEAMom

[JackieCalifornia]

Non LLMDs are usually content with Quest or LabCorp tests; LLMDs often prefer the IGeneX test, because it gives significantly more detail than the standard tests.  

Non LLMDs have no use for the IGeneX tests, and sometimes the non LLMDs can react badly if they know you are seeing an LLMD and having tests run at IGeneX.  It's stupid, but it has happened to me.  Non LLMDs often consider the LLMDs to be quacks, and are afraid of appearing to cooperate with LLMDs in using long term antibiotics.  Non LLMDs often believe long term antibiotics to be unwarranted and perhaps verging on malpractice.  It's not a friendly rivalry, and the patients are the losers.

There's no harm in having the non-Igenex tests done (except for the cost and loss of some tubes of blood), and the LLMD you end up seeing may find them useful at some level, I don't know.  In effect, you are pursuing two tracks:  LLMDs, and non LLMDs.  At some level, that will continue, because finding ancillary MDs (such as specialists your son might need to see for some reason) who agree with LLMDs can be difficult to find.  

True story:  I had an MD (an infectious disease MD who knew I was already seeing an LLMD) refuse to believe the positive Igenex test results I had for an infection from a second tickbite, so he ran his own non-Igenex tests, which also came back positive.  But he refused to treat me!  He said:  "Go home, and in a couple of months, call me and tell me you are fine."  And then he showed me the door.

I am not an advocate of hiding things from MDs, and I have paid the price for my honesty more than once, along the lines of the story I related above.  So ... this is a long way of explaining why you will be working on two tracks for at least a while in pursuing care for your son:  the LLMDs vs the non LLMDs.  

Non LLMDs will not in my personal experience order Igenex tests; only LLMDs will do that, although LLMDs also use non-Igenex labs for some tests, since Igenex tests are specialty tests only and not a full service lab, to my knowledge.

Unless you want to save the money, I would have run whatever tests the non LLMDs want, and they will decide what those tests are.  You can ask for what tests you think are a good idea, but I gave up at a certain point and just let each set of MDs (LLMD and non) order whatever they each wanted.  So yes, you'll probably have to wait till you get to an LLMD to get the Igenex tests.  Another problem is that a non LLMD would not know what to do with the Igenex results.

"Two roads diverged in a wood, and I -- I took the one less traveled by,
And that has made all the difference."   Robert Frost