posted
Hello, I am so happy to have found this board! I believe my 15 year old son has Lyme Disease, undiagnosed.
A little background... He is a hunter, a mountain biker, & helps my husband in the woods logging for the past few years. He is always covered with bug bites dispite sprays. He had a strange flu last winter. He also had on and off fevers all spring. I believe he may have had this for awhile.
He has had constant joint pain since age 12. Diagnosed with (sp?) oshtins slotters disease of the joints. He also had a severe concussion which he was hospitalized for 3 1/2 years ago, but recovered without problems until now.
2 months ago... He was tired all the time, started complaining of dizzyness. This was during the heat wave, so the doc told us to increase fluids. He started having blurred vision, I took him to the emergency room. We were told it was possible ocular migraines and told to see his regular doc. His regular doctor thought it was his middle ear and referred him to an ear specialist. All tests at the ear specialist were fine. Then he was referred to an eye specialist. All tests there were fine also.
In the mean time, his symptoms are getting worse. He has constant blurred vision, double vision, confusion, problems concentrating, and is unable to go to school.
He was then referred to a neurologist. He thinks he has ocular migraines, although my son has no headache. He was given topamax which made him sick. MRI was fine. Durring this time (3 weeks ago) my son had an abnormal EEG showing no neurologial abnormalities accept to the electrical wave to his heart.
We were referred to a pediatric cardioligst. He said my son has PVC's every second beat. My son wore a halter for 24 hours which showed no "runs". He also did a EKG. The cardioligist said the pvc's were'nt causing his blurred vision and said he needed no treatment.
This is insane, my poor son!
-Tests with neg results were: -thyroid -diabetis (I'm a horrible speller) -iron is fine -some tests for metals were fine -sugar fine -EKG showed PVC's -EEG showed problems with the electrical waves from his heart to his brain. -MRI fine
After the topamax made him sick, I called the neuoligist Friday. He said take him off the topamax (du) and call him on Monday & basically hung up on me before I could even ask a question.
I've done alot of reading since then. I called his regular doctor to ask for a lyme disease test. This is where a mom's heart falls apart... he told me that he thinks my sons problems are psychological, and suggested I let a month or two pass and make another appointment! I asked for a copy of my sons file and told them I would pick it up asap! I called another peidiatrician but I couldnt get an appointment for him until the 19th.
I just need some help and advise, the doctors are not helping my son!
Do you dear people think this could be Lyme Disease?
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
I need all the help I can get for my child right now!
Thank you, Ma
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
HI, Welcome to the board. It is ni e to meet you although I wish it was under better circumstances.
Don't you love the being reffered in circles.
I have been sick since I was a kid so I know how rough it is. For me it was alot harder to get drs to believe that my symptoms were real and I wasnt faking when I was young -
why cuz most drs are morons especially when it comes to lyme disease. Lyme tests (even at the better labs) are not always accurate. Lyme disease is suppose to be a clinical diagnosis. Your son could test negative and still have it.
Your sons symptoms are possible lyme symptoms but the also fit other diseases. WHat you should do is find a lyme literate dr (llmd). Post on seeking a dr and include where you are and where you can travel to.
Make sure your pm is working cuz we do not post drs info on this board due to political issues.
If it is lyme or lyme and coinfections he needs a llmd. Dont waste time energy or money on other drs. If it is something other than lyme well they can address that to.
I was told that my problems were psychological. They also started when I was a teen. Unfortunately the symptoms got worse, and by the time my heart was infected at 30 it was hard to convince me that this was all in my mind.
Your son's symptoms certainly could be lyme, with the bites and living in an endemic area it is likely. Especialy as you and the doctors have looked into so many other possible causes and haven't found anything. Other than depression or possibly migraines. Lyme can causes depression and migraines.
There are only a handful of doctors who understand the complexities of lyme disease. LLMDs or lyme literatute doctors. In NY one would expect every internest to be able to pick up a case of lyme. Unfortuanately that isn't so (I grew up in NY and was likely bitten by a tick there)
Please go over to seeking a doctor section and place a post.
Your son is sick, he is unable to attend school. There is no reason to wait and see if he will suddenly get better.
I am so sorry that your son has to go through this at such a young age.
Posts: 628 | From the south | Registered: Dec 2005
| IP: Logged |
posted
The best advice I can give you (besides what Lymetoo has said) is to change doctors! In the year that I have been sick, I have also gone from one specialist to another to another.
I've had blood tests (enough to have probably donated a gallon), ultrasounds, MRIs, x-rays, CAT scans, PET scans and EMG. Most everything has come back negative as well. I was told I had arthritis and was just in denial. One doc told me to "take the Celebrex and stop whining"!
I'm not one to be patronized so that just kicked me into high gear! I started to spend hours researching every possible scenario. (This can be dangerous - you have to be able to handle this emotionally.)
Then I started pestering doctors. If the appointment was too far away, I would keep calling for cancellations. I would call specialists and ask questions of their staff before deciding who I wanted my primary to send me to next.
I insisted on copies of every blood test and other test and kept them in a file. I also created a spreadsheet and logged every symptoms I've had as far back as I can remember. At every appointment I took a copy to the doctor.
I also created a one page document that lists in a nutshell what my symptoms have been, what tests have been done, what medications I'm taking, etc. I hand them that to read before they start asking questions since then I won't forget something important.
All of this has helped my credibility with the doctors because they know I mean business. One even asked if I had a medical background because I was so knowledgeable about all the different blood tests! (No medical degree - just tired of not knowing what is wrong with me. If they aren't going to figure it out, then I guess it's up to me!)
Your son's symptoms do sound very much like Lyme and seeing a LYme doctor would certainly be a good idea...but Lyme can also create other problems that may need to be addressed by other specialists too.
Document EVERYTHING! And put on your boxing gloves to fight for your son.
It was a difficult fight for me this year because I was so sick. I wish I had had an advocate fighting for me (like you will do for your son). There were days and weeks that I just couldn't handle even thinking about it. But that was when I really needed someone to argue with the docs for me! I finally am being treated and there seems to be light at the end of the tunnel. I hope you find that soon for your son.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Briefly, Post on seeking a doctor for a llmd. You have enough tests for the llmd to realize alot has been ruled out.
Why keep looking, when the Igenix and other labs can be used. Symptoms resemble some of those on the list.
Alll that can happen, is that it is ruled out, but do NOT let your primary do the testing. You must see someone experienced with lyme, who understands the tests, their weaknesses and strengths and patterns, who knows the multitude symptoms that lyme can present.
Then if it is ruled out, you can keep looking. But you have to have an experienced lyme doctor in order to have a trustworthy diagnosis, whether it is yes or no. Too many people have had negatives when done by inexperienced md's, and have paid for it dearly.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
posted
my son got sick when he was entering 6th grade.... it turned out that it was Lyme and Babesia.
We went to over a dozen specialists trying to find out what was wrong with him FOR A YEAR. That is why he still is not cured -- he graduated from high school two years ago. The Lyme and Babesia got very well diseminated while we went from doctor to doctor.
It started out with sinus pain & headaches. Next came several types of severe headaches, followed by dizziness and blacking out onto his face. Then came the memory loss and a wheelchair. (Let me add at this point that Dr Jones has turned Tim way around... and Tim was out of the wheelchair by 8th grade; he got off of home-bound instruction from school and managed to graduate from high school; Tim is currently working part-time and attending a community college --- the headaches and sinus pain are still a problem)
Tim had tests and Catscans and MRIs and more tests and spinal taps and even more tests! The first tests for Lyme came out negative so I was told it could not possibly be Lyme (even though we were in a high Lyme area). As a matter of fact Tim has never tested positive on an ELISA test (and at that time I didn't know the Lyme tests were not accurate, nor that there were several types of Lyme tests). We were told that it was allergies, that it was migraines, that it was Osgood Schlatters, that it was Mono, that it was some kind of unidentified inflammation, or that they just didn't know. Oh, I forgot two others: that it was psychological, that it was school phobia.
This is YOUR son's life you are dealing with. None of the doctors have the same at stake that you do. Trust your gut instints, do your own research, and never trust any doctor 100% (except maybe Dr Jones) Posts: 758 | From now TX | Registered: Mar 2001
| IP: Logged |
posted
Thank you all so much for your posts and advice! I now have a list of doctors to call Monday morning and we will get him in to see a good Lyme doctor as soon as possible.
I wont back down on this, not for a minute! I know my son and that this is not "all in his head".
I cant wait to get my child feeling better!
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
posted
Ma, That is good news ..that you already have a list of doctors! Children do respond remarkably well to treatment, with a mother as astute as you and a good LLMD your son will soon be on his way to good health.
Keep us posted.
Posts: 628 | From the south | Registered: Dec 2005
| IP: Logged |
Despite how endemic it is, they are NOT diagnosing properly in NY at ALL, and when they do, they are treating poorly and not long enough for the kind of symptoms you describe.
Out of the mound of links you were sent - (for now) read Dr. Burrrascano's Guidelines -
and choose an experienced LLMD - which will save time, money and suffering in the long run -- anyone good for treatment to efficacy for your son will be a couple hours drive south of you, at least. You have a window of opportunity with his youth to treat this right the first time.
Look for Doc L and Doc H in particular. Also, begin studying alternative supports.
Good Luck,
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
How blessed your son is to have a mom like you! With his illness, he obviously needs an advocate, and you seem to be doing a great job so far! I would've died (literally) if my mom hadn't fought with every single quackquackquack to find out what I really had. Just follow the advice of the other people on this board, and you'll find your answers, I'm sure.
ROCK ON MOM!
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
| IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Ma, hugs to you for the hell that you are going thru..But just a few thoughts...While you are fighting for your son,make sure you take care of YOU..It is so easy to neglect yourself while in this battle.
And then do your best to get him really well before he is 18..WE were unable to do that and now things are very complicated.
I am sorry any other family is dealing with this..Wish I had a magic wand..Hugs. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Ma, I am so glad you found some names of doctors that you are calling on monday. If you hit a brick wall looking for a doctor the LDA has a service where you type in your zip code and this gives you some names of doctors who are memebers of the ilads organization.
This doesn't aways insure they are a really good LLMD but it is a start. I would call around maybe to local support groups or post here and get a personal reccomendation. There webb site is:
When you find a LLMD it is very important to use a good lab for testing. The best IMHO is www.igenex.com
keep in mind though that no test is 100% and CDC negative doesn't mean much. Lyme disease is a clinical diagnosis. Here is a link that explains the reasons why you can still have lyme disease and test negative:
posted
Hello everyone! Thank you all SOOOO much for all of your help! You wonderful, wonderful group of people!
I made my calls first thing Monday morning... was on the phone most of the day & then ran around getting MRI results and some other tests I was lacking in my 3 ring note book, to take with us.
We left Tuesday morning on our way to see doctor's J and M!!
My son has suspected Lyme disease. All of the right tests were done and sent out ASAP!
The great news is we left with the medicine he needs to get well!
I have so much more to say and so many people here to thank. I will write more later as I'm very hurried right now trying to get coverage for the meds, but wanted to post to let you all know.
From the bottom of my heart, thank you! Ma
[ 01. October 2006, 10:13 AM: Message edited by: ma ]
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
posted
Sent you a PM. I have lots of info on children and lyme in a organized binder that I can mail to you. You are going to need it when you deal with the school. If you go in armed with information they will hopefully listen.
Posts: 547 | From Maryland | Registered: Mar 2005
| IP: Logged |
How it works You may already be familiar with how these groups work, but if not, here's a brief summary:
If you are not already a member of Yahoo Groups, you will have to join. It is free. You will have to answer a few questions, and make some selections.
Any member of the group can post a message for all other members to read. You can do this either by going to the group web address, or by sending e-mail to [email protected]. Your message will be instantly posted for everyone in the group to read.
There are three basic ways to view the messages: 1) go to the group web site and click on any new message you want to read; 2) specify during your registration that you want each new message to be sent to your e-mail address, or 3) specify that you want all the new messages sent in one e-mail once a day.
When you join, the e-mail address you specify will be available to all other members, but to no one else.
Screening new members To be certain that we only have the people who should be there, the process for joining the group is a bit more complicated than most. You can apply at the address above, but before you will be admitted, the moderator (that's me) will have to approve you. For those of you I already know, this will occur as soon as I receive notification of your request. Any others will require some screening first. If you have friends who want to join, tell them to go through the registration process and you or they can also send e-mail to me ([email protected]) stating who recommended them.
For people we do not yet know, we will ask a few questions to qualify them. Once someone is accepted, their first post will have to come through me. After that, they will have full membership privileges.
I apologize for the complexity of this, but it is essential to do it this way so that LymeTeens is always a safe and private place for you.
We will have professional advisors who may comment from time to time. But basically it will be your group. You can ask questions, tell your stories, complain, brag about your success, etc.
You are always welcome to contact me directly with any questions, problems, complaints, suggestions, etc.
It's up to you to make this work, so take advantage of LymeTeens and tell any friends you think would enjoy participating.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
![[rant]](graemlins/rant.gif)
![[cussing]](graemlins/cussing.gif)
![[Mad]](mad.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic